Episodes
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Dr. Janet Patterson: Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about the LPAA model and aphasia programs that follow this model. My name is Janet Patterson, and I am a research speech-language pathologist at the VA Northern California Healthcare System in Martinez, California. Today, I am delighted to be speaking with Dr. Elizabeth Madden, an Assistant Professor at Florida State University in the School of Communication Sciences and Disorders and an affiliate of the Institute for Successful Longevity. Liz also leads the FSU Aphasia Research Laboratory. Liz's research, teaching and clinical interests focus on rehabilitation of aphasia, and specifically on understanding the relationship between spoken and written language abilities in individuals with aphasia and developing behavioral treatments to address reading and writing disorders post stroke. Her work also addresses the impact of aphasia on the friendships and social well-being of people with aphasia and their care partners. These Show Notes accompany the conversation with Liz but are not a verbatim transcript.
In today’s episode you will hear about:
the power of friendship and what people with aphasia and care partners think about how aphasia can affect the ability to create and sustain friendships, the definition of literacy and its behavioral components, and behavioral treatments for reading comprehension deficit in aphasia.In 2024, Liz was named a Distinguished Scholar USA by the Tavistock Trust for Aphasia UK. The Tavistock Trust aims to help improve the quality of life for those with aphasia, their families and care partners by addressing research capacity related to quality-of-life issues in aphasia. Congratulations on receiving this honor, Liz. Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the career influence of the Tavistock Award.
Welcome Liz, to Aphasia Access Conversations.
Dr. Liz Madden: Thank you, Janet. I'm really happy to be here today. I also say thank you to Aphasia Access and to the Tavistock Trust for Aphasia. I'm very grateful for this award and excited to have this conversation.
Janet: I'm excited to be talking to you, my friend and research partner in several endeavors that we've been working on over the last few years.
Liz, as we've said, you were named a Tavistock Trust Distinguished Scholar USA for this year, and you join a talented and dedicated group of individuals. How has receiving the Tavistock Award influenced your clinical and research efforts in aphasia,
Liz: I first wanted to extend that thank you to the Tavistock Trust for Aphasia, and specifically Henrietta, the Duchess of Bedford and the honorable Nicole Campbell, and just a very gracious, sincere thank you for all the time and effort and support they give to aphasia researchers. I would say, I'm just delighted and very humbled to be recognized this year. I would say further that this award motivates my work that is focused on trying to really make an impact on the lives and quality of life and successful living for people who have aphasia and continuing my work. My beginning work was really more impairment focused, which some of that we will talk about, and I really value that. But having this award, and the more I stay in the field, it is extending that and making sure that everything I'm doing always is directly related to helping the lives of people with aphasia.
Janet: That leads right into the question I'd like to begin with Liz, which is about your recent work investigating the role of friendship for persons with aphasia. I believe in the power of friendship and community during joyful times and also during the sad times in one's life. In Aphasia. Access podcast episode number 119, Finding the person in front of aphasia, I talked with your friend and colleague, Dr Lauren Bislick, with whom I believe you collaborate to investigate friendship and aphasia. How did you become interested in this aspect of aphasia, and what can you tell us about your work in this area and your collaboration with Lauren?
Liz: Lauren and I did our Ph.D.’s together. We both were mentored by Diane Kendall at the University of Washington, so Lauren and I are Ph.D. sisters. Also, we were both at Project Bridge, led by Dr. Jackie Hinkley in 2018. That's really where my interest in friendship began. That conference brought together researchers, speech-language pathologists, people with aphasia, and their friends and family. I was the researcher at a table, and we ended up being Team Friendship. Lauren was also at this meeting, but she was at Team Yoga; Lauren does a lot of work with friendship, but also with yoga. My other colleague who does a lot of friendship work with me is Dr. Michelle Therrien here at FSU. She primarily works with children who use AAC, but her main research is friendship. She and I had already had some conversations about the importance of friendship, particularly for people who have communication disorders. The idea was we leave the conference and to take action and carry out some of the goals that were generated from that discussion. So that's when I reached back out to Lauren, because she was at that conference. Then I also reached out to my friend, Michelle Therrien, and other individuals who became part of our Team Friendship, Dr. Sarah Wallace, who's also one of our good friends and collaborators, and Rachel Gough Albritton who is one of Jackie Hinkley’s former doc students and here at FSU as well. and the office of research. That is the background of some conversations before Project Bridge, but really for me, coming back and actually starting studies addressing different aspects of friendship, which I know we'll talk more about, was really brought about by the Project Bridge conference.
Janet: That is quite a story, and I can see you sitting around the table and developing Team Friendship - good for you.
We all know, Liz, that one of the unfortunate consequences of aphasia can be the loss of or the diminishing of friendships, or the disruption of the communication skills important to developing and sustaining friendship and community. What have you learned from people with aphasia about their successes and challenges in sustaining and creating new friendships.
Liz: Yes, good question. Well, at that conference that I mentioned, there were five or six people with aphasia, and initially our table was labeled something like, What happens in the long run? and we started having conversations. It was very clear after our initial conversation that the group centered on relationships and friendship, so we shifted to being friendship only. I will say, just at that table, it became very clear to me, that's what rose to the top when the group was thinking about the bigger picture of living life.
In a research project we've done there was a small sample of 15 people with aphasia, and we talked to them over time. I think the timing of a conversation is really something important to keep in mind when we're talking to people with aphasia about any topic, of course, but particularly friendship. From other studies we've noticed that responses are really different. If we're talking during the early days, maybe the acute days, versus the chronic days, we'd get really different responses. Just a quick summary, again, this was 15 people and a unique set. Most people in our study were a part of aphasia groups, and, of course, really motivated to do research. But I will say, when we looked at their responses, when asked to think back to the early days, all different aspects of friendship, how supported they felt, or how they were able to communicate, and we compared it to their responses in the now. Overall, the pattern was less satisfaction, feeling less supported or less able to engage in those earlier days, but more of a recovery pattern over time, but again, not for everybody. There were still a few people in our group that were reporting not having many friends. Our paper had a different light, a positive light about friendships. Some of the other papers out there have a more negative tone. It's a very important area we need to address. I was happy to see this group reporting, now that they had been living with aphasia for several years, their pattern of more negative responses early, and a recovering pattern now. They reported making friends with other people who have aphasia, and finding at this point, who are those good friends.
There's other great work being done by other colleagues, Brent Archer, Jamie Azios and Katie Strong, who are studying the same topic. They had a great paper that describes who stuck around, they were examining the next steps of what it takes to support the positive recovery that we know does happen for some people.
Janet: I like the positive perspective you are taking. Given that one has had a stroke, and given that the this is the situation in life, what is the positive? What can you do? Who are your friends? Look at positive ideas rather than publishing research on all the negative aspects. Kudos to you for doing that.
Liz: Thanks, all of it's important, right? We have to know that. I think we had a special group. I think we had a particularly positive outcome, and it was good to know that friendships don't disappear for everyone. But I think there's something that those people had done and that their friends had done, that we're still trying to learn more about.
Janet: Thank you for that work. Liz. It makes me think about the aphasia journey in that it involves not just the person with aphasia, but also their care partners and all the people around them. In your investigations of friendship, what do the care partners of persons with aphasia tell you about their successes and challenges in sustaining and developing friendships? These friendships could be individual friendships or partner friendships or group friendships through social, religious or professional activities or even community groups.
Liz: Thank you for this question. I think it's sometimes a forgotten group that we overlook, the care partners, and the critical role they play in the recovery of people with aphasia. I always try to have us remember we want the care partners to do well on their own as people, and so we've done a couple projects. We've just finished data collection on a much larger study of 80 aphasia care partners, and I'm just getting into those data. We did a Qualtrics survey and also did experience sampling, where we used a phone app, and four times a day for two weeks, participants got these little pings, and they had to tell us, Where are you? What are you doing? Who are you with? How are you feeling? When was the last time you interacted with a friend? Was it a text? I don't have the amazing outcomes for you yet. This project was a much bigger follow-up to a project a few years ago with 35 care partners. We, of course, wanted to interview them but then COVID was happening, so we settled for a really nice Qualtrics survey.
I will say that these individuals were surprised when we were reaching out to them. They kept trying to schedule their loved one with aphasia, and we said, “No, we want to talk to you about your friendships.” And they were surprised, asking, “You want to talk about me.’ I will say they were very excited that we wanted to know about them. Back to the timeline I shared earlier in that very small study, the profile was opposite. We asked them about their friendships before they were caregivers, the early stages of caregiving, and then now, and their comments kind of make sense. Across the group they reported in the early stages, they felt like they had really great friends, support and satisfaction. People were rallying around them, coming to the hospital to support them. Many of them had been caregiving for a very long time when we did a comparison, and their reported friendship satisfaction and support was actually lower now. The questions were not the same and the groups were different, but as I told you a few minutes ago, the people with aphasia were more negative in the acute stage, and our small group were more positive now with how they're feeling about their friendships, and the care partners were the opposite. They were feeling more supported in the beginning, and now as time has gone on, some of them report the friends aren't there as much. Some of them felt like they were a burden, or they didn’t know how to engage, being very selfless. They have dropped their own social interests to take care of their loved one. We did see in that project, that the longer, the more months a person had been caregiving, was correlated with poor self-perceived friendships and also how they perceived their loved one’s health. That was just their perception. If they perceived their loved one to have more health concerns, not just a feature but overall health, they also tended to rate themselves as not as satisfied with their friendship. Bringing in that piece of information and the caregiving burden into our new projects, we did actually get scales on resilience and caregiving burden depression. In this new project we replicated some of our same questions, and we're now trying to look more at overall well-being, seeing how resilience and purpose in life and caregiving burden might play a role.
Janet: That reminds me of the commercials, when you are taking off in an airplane or when you are thinking about being a care partner, you do have to take care of yourself as the care partner before you can give the best care to the person with aphasia. Anything that we can do to focus on the person the with aphasia, and also focus on the care partner, I think, is good in terms of developing and sustaining friendships,
Liz: Yes. Care partners definitely have a lot more to say, and we haven't actually been able to do face to face interviews yet, but we did have a lot of really rich, open ended responses and surveys that we're still looking through. A piece I'm really interested in, is we have that one-time perception when they did our one-time survey, now we have their responses, we can track how people respond over a two-week period, were they always at home with their loved ones and not responding to friends? I think there's just a lot and again, trying to understand from this group what are the positives. Who are the people that have these positive responses? Then, of course, the next big steps are trying to provide more research resources and interventions for both care partners and people with aphasia. Our group has not yet reached out to friends, so that's a big part to come. I think other researchers have examined friends and a key part intervening with these friends too.
Janet: People with aphasia and care partners have different friendship styles and needs, and when aphasia disrupts communication, it can also affect the way a person approaches friendship. As speech-language pathologists, I believe that we can play a role in guiding a person with aphasia and a care partner to develop communication skills that can support friendship efforts. Liz, what are some ideas or actions that you might think of for speech-language pathologists in a busy clinical practice? What kind of actions can they take to support friendship activities, for a person with aphasia, recognizing, of course, that we are all different in our friendship activities. Also recognizing that you're at the very beginning of some of this work, I'm hoping that you have some ideas you might be able to share with us.
Liz: Yes, actually our very first friendship project addressed this topic. It was led by Michelle Therrien, and we surveyed about 40 speech-language pathologists trying to find out their view of the role that they think they should play. They find friendship to be very important. They find it to be in their scope of practice. But not surprising, were not aware of resources. They felt overwhelmed with how much speech-language pathologists have to cover, right? But it was really good to know that the group we reached out to found it to be a very important part of their practice that they want to address. I think you hit on something really important, that we teach and adopt having a person-centered care model, and we know that it's part of what we ask about. The simplest thing is asking. We don't need tools. We just need to make sure it's part of what we ask, making sure we're talking about relationships, talking about friendships.
There are some really great tools that do exist. There's the Stroke Social Network Scale by Sarah Northcott and Katerina Hillary from the UK. Katie Strong, Brent Archer, Jamie Azios and Natalie Douglas are a wonderful group who have been studying friendship. They've used the Social Convoy Model in some of their papers. It has a great visual that they have used, and therapists can also use. Basically, it is mapping out the social network of who's most important, which could be used one time, or as a pre-post measure. There are different ways, formal or informal, of trying to monitor someone's social network or how they feel supported. I don't think there's a target number of friendships and I don't think more means better, but it could be just making sure we're checking in and that we know that's an important part of therapy. We want them to be able to communicate and interact with friends. Speech-language pathologists are creative in to how to make that happen.
Janet: I agree with that view Liz, and I hope that speech-language pathologists will feel comfortable being creative and asking people about their friendships or what they might need to help maintain or sustain their friendships.
I would like to turn now to the topics of reading and literacy, which I know you have been investigating. While these terms are related, they are not synonymous. Would you please explain the difference between them and how you are investigating both in your research?
Liz: Yes. Thanks. That is a good question. To be honest, the first answer is not very scientific. When I was writing papers it was getting cumbersome to always write reading and spelling/ writing. The term came to be when I wanted to make sure that I was making it clear that I wasn't just focused on reading, but also concerned with the spelling and writing components. With my colleagues, Jessica Obermeier and Aaron Bush, we started using the term literacy for some of our work. People will have different ideas of what literacy might entail. I have been describing treatment as “literacy focused”, working on reading and spelling and writing.
My initial work was very much focused on reading, and over the past several years I became more interested in trying to also add on the spelling component. If we're working on spelling and writing it gives us a chance to inherently work on the reading. If we're only focused on reading, it doesn't bring in the writing. There's a time for them to be separate, I fully agree. There are also times where they can be targeted at the same time.
Janet: That makes perfect sense. When I think about how we discussed in the past, reading for pleasure, or reading to gain knowledge, or reading for information, or reading for safety, so many different aspects of reading, literacy also factors into how you use reading in those situations.
Liz: Yes, and so in a lot of day-to-day communication, you need both, right? It's for text messaging, right? We need to read it and respond in a written way, also emails. There are lots of instances where for the for the interaction to go well, we need to be able to read and respond in writing, such as filling out forms, email, texting, social media. For a lot of interactions we need both for there to be a successful written language exchange.
Janet: Liz, as part of our work with the Academy of Neurologic Communication Disorders and Sciences, Aphasia Writing Group, you and I were part of the team who critically reviewed treatment approaches for reading comprehension deficits in persons with aphasia. You've also investigated, as you mentioned earlier, specific aspects of reading deficits in persons with aphasia. What are some of the insights that you have gained from this work? And by the way, it was such a pleasure doing that critical review of treatment for reading deficits, and there was a lot of interesting information that came to light in that paper.
Liz: Yes, thank you. I was going to comment that I remember we thought we were going to have all these papers to go through and really and that review, we were very much focused on papers where the main outcome was reading comprehension. When we stuck to what our aim was, there really weren't that many papers that that met the aim of that project. So that really brought to light that it really is an area of our field that doesn't have enough attention.
Some of my recent projects, as I mentioned with Aaron Bush and Jessica Obermeier, we've talked to people with aphasia and gotten their perspective of before and early days. I really like doing this research over time. Things change, but we learned just how important reading and writing are to people with aphasia, and that they really want to work on it. I think we've seen when we looked in the literature, there wasn't much there. When we've talked to people with aphasia and speech-language pathologists, they want to work on reading, and they're not sure how. That further motivates me that this is an area to work on.
In some of my beginning work, I was Diane Kendall’s research speech language pathologist for a few years before I did my Ph.D., and I exclusively delivered her phono motor treatment. In that research trial, the main outcome was word retrieval, but the therapy that she designed inherently worked a lot on reading and writing. We retrained every phoneme - how to say it, what your mouth is doing, and also the graphemes that go with the phonemes. As her research speech pathologist, that's really when I got very interested in reading. I'd be in these sessions, and we'd finally bring out the graphemes that go with the phonemes. I recall telling people that this is going to get better – and it did not. That connection between the phonemes and the graphemes, for a lot of people, wasn't there. In that clinical experience as her research speech pathologist is when I realized that the treatment improved reading for some people, but not for everyone. So that's my background of really getting focused on reading.
In the last few years, I've been working on adapting that original version of treatment that was for word retrieval. I've added some components to make it more focused on reading. I've been working with Olga Burkina, who's at the Kessler Stroke Foundation, and has an NIH grant where she is pairing exercise with this reading focused phono motor treatment. It's fun to be a part of that group exploring the idea of doing aerobic exercise to improve the brain blood flow, and to see if that's going to help improve reading treatment. Again, the idea being going forward is what the treatment might change.
There are some other projects also. I'm working with Will Graves at Rutgers. He is using computational modeling to have us stop guessing which treatment. We're trying to get a really good baseline assessment, trying to find out about semantic impairment, phonological impairment, and then we're using this reading focused phono motor treatment. We also have a reading focus semantic feature analysis. I really enjoy getting to work with different researchers who have these wonderful, big questions, and that I'm getting to support it as the speech-language pathologist on these projects focused on reading and writing and phono motor treatment. So those are some exciting projects I'm involved in right now.
Janet: That's exciting, because you started out by saying there were only a few papers that we found that really address reading treatment, and you're right. It's daunting, then how do you select the reading treatment? How do you help this person with aphasia who wants to improve their reading comprehension? I think it's exciting that you've got all these different avenues and are working with a variety of people to investigate treatment.
Liz: Yeah. And the one thing I'll add to that is part of that, that review we did, for some people those treatments are helping reading comprehension. But for some people, I've been trying to work on the next step. I have a very small dataset where I've added a semantic comprehension stage to my adapted photo motor treatment. I'm in the very early stages of this and I'm sure it's fine to say, but I've been having these really exciting conversations with Kelly Knollman-Porter and Sarah Wallace. They're also Tavistock Trust recipients, and they study reading from a different perspective, using text to speech, compensatory and very focused book reading. They're very comprehension focused, so we're at the very early, fun stages of where we are in our thinking. I think there might be a middle step we are missing, but we are talking about taking these impairment focused treatments, which I think have a role, and have a participation, functional part of it. That’s another emerging, new collaboration, where we are coming to reading from different perspectives, and we're trying to see where we can get with that goal, back to this comprehension question, improving functional reading, maybe from impairment and compensatory approaches.
Janet: I think that's the right approach to take, and I think it's exciting, because we have to remember that everybody reads differently. Some people like reading, some people don't enjoy reading. They read what they have to, but they don't particularly enjoy it. So, if we all come to it from different perspectives, we all have different strengths that we bring, and different deficits as well, and different needs or designs, just as is so many things with aphasia. Start with the person with aphasia, asking What do you want to read? What problems are you having? Then use that as a guide to selecting an impairment-based treatment or text to speech treatment, or whatever. I think that's exactly the right approach.
Liz: The one thing the treatment we were talking about, phono motor treatment, in general, is a phonology treatment. The good thing is that my focus is asking, is it improving reading? I'm also extending it to writing. We do know at its core, it's a language treatment, so it is nice that it can be tweaked to serve the person's main interests. I think that's important, that we are trying to work on what people want to work on, but we want to make sure we're improving, if we can, not just one language modality, and we know that these abilities are supported by similar brain structures and underling cognitive processes. That's something else we've been trying to work on, being person centered and at the same time trying to maximize generalization - lots of pieces. I am finding now what's most motivating and exciting is trying to make sure that we're doing things that people with aphasia find important, and how also to keep the whole science moving forward in this way that's going to have functional, important outcomes. That people with aphasia are going to be able to do what they want to do to the best that they can.
Janet: Absolutely! But then there's the scientific challenge of how do you collect the data? How to best observe specific outcome data on performance measures, but also collect the person-centered data. How do you collect data that really can speak to whether you're having a success and whether this might be generalizable or transferable to another person?
Liz: I think it's important that we need both. I always say, and some of my collaborators may not like it, but if in the person reported outcome, a person with aphasia is telling us that they feel better and that they are communicating better in life, and those measures should not be optional, those measures to me, a critically important part of seeing this treatment successful. There are different ways to do that and different ways to capture their perspective. For example, if trained reading words moved this much and if the patient reported outcome change is greater, then I find that to be a success. If the reverse happens, I find treatment not successful. If my probes showed gain but the person with aphasia does not see it or feel it, then I don't find treatment to be a success. So, I think it's really important that persons with aphasia tell us different things, and we need to have many assessments in both of those categories. I think, when possible.
Janet: You're absolutely right. When you think about many of the treatments that we're doing,
they are not necessarily easy, and they take time, and you have to stay the course. I think you know, I've been interested for a number of years in motivation and engagement, and what keeps people motivated and doing what they're doing. If you've got a treatment that you can see over time, small changes in your specific reading outcomes, but not so much of a change in the person centered outcomes, or person reported outcomes, how do you know the person is still really engaged and motivated and willing to slog through your treatment in order to get to the place that you hope they will? I think you're correct when you're assessing the importance of the person reported outcome.
Liz: Yeah, that's good. And then that's a whole other like measure in itself, right? The key of motivation we've talked about in some of the trials. The one person who didn't do very well, and just in our conversation, sometimes it for different reasons. That wasn't motivating for that person. There's that's a whole very important piece that a lot of us have a lot of room to improve in how we capture that and support that.
Janet: Which is a challenge when we're trying to devise treatments for, say, reading or anything that can be applicable to a wide range of persons with aphasia. Kudos to you for meeting that challenge as best you can.
Liz: We're working on it. But I do really think that it's changing. Sometimes I feel like there are impairment-based people and life participation people, and I don't think it needs to be that way. It’s fine if we only study one area. We can't all study everything, but I think as a whole they complement each other very well. And so I'm just excited to see that it seems like things are moving in a really exciting way, where people who study aphasia in various different ways now seem to have the main outcome, asking is this going to help people with aphasia feel better, communicate better, and look forward to something different in life? I think we're all seeing that that's what we're supposed to be doing, and how we do it is going to look really different, and that's great. I think we're moving in the right direction.
Janet: Very well said. I think, and you obviously do as well, that literacy and reading skills are crucially important to individuals with aphasia in so many ways, such as life skills reading or pleasure reading. Acknowledging that we all have different skill levels and preferences, what are some ideas that you might have identified that speech-language pathologists can use to support the literacy and reading desires and activities for a person with aphasia?
Liz: Great question. I think my answer is very similar to the question about what can SLPs do to help support friendship? I think being person centered. You said earlier, right, we all have different interests. Somebody might say it's not one of my goals and I really don't want to spend a lot of time on this. But just having those conversations and person-centered measures and using supported conversation we can easily gather important information. There are some really good patient-reported outcome measures that ask about reading, so maybe use some of those existing tools. The Comprehensive Aphasia Disability Questionnaire has a nice scale that talks about different aspects of reading as well as other aspects of language. But at the minimum, I think finding a way, even just to draw your own scale and then trying to find out in their life, what are different activities where they want to or need to engage, right? Texting, email, restaurant. I mean, we think about it, we're reading all the time throughout life. So, I think finding the reading need is a general interest and then getting really specific is one way to do it. Another thing could be, as I mentioned before, our brain relies on similar structures and language networks when we are engaging in spoken language and written language. So oftentimes improving our reading and writing improves our spoken abilities and vice versa. So even if it's not the main goal in treatment, for example if the main outcome might be word retrieval, I really believe multimodal learning is important. If, after you've gone through what you want to do say writing it, having them repeat it, maybe copy it, even though that's not the main goal, and it's not slowing the therapy, if it's working for you and your client, then I really think, at the minimum, using written language to support spoken language has a good role. I also think the opposite can be true using spoken language to support written language. So I do think that it's important that we know we are addressing all of language, and that that language skills really do usually move up and down together in aphasia.
Janet: Well said, again. Liz, thank you so very much for joining me today in this fascinating look into friendship, literacy, reading and aphasia. And again, hearty congratulations to you on being named Tavistock, Distinguished Scholar. On behalf of Aphasia Access, I wish you well in your research and clinical efforts, and thank you for taking the time to speak with me today. At this point, I'd also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcast, including this fascinating discussion with Liz Madden.
Liz: Thanks so much, Janet, I feel like you could just chat with you all day. Thank you again for giving me a chance to highlight some of my work. Also I want to thank everyone with aphasia who has participated in my projects, all my students and collaborators, Aphasia Access and the Tavistock Trust for Aphasia. Thanks again.
Janet: For references and resources mentioned in today's podcast, please see our Show Notes. They are available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. For Aphasia Access Conversations, I’m Janet Patterson, thanking you again for your ongoing support of Aphasia Access.
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Purdy, M., Coppens, P., Madden, E. B., Freed, D., Mozeiko, J., Patterson, J., & Wallace, S. (2018). Reading comprehension treatment in aphasia: A systematic review. Aphasiology, 33(6), 629–651. https://doi.org/10.1080/02687038.2018.1482405
Strong, K.A., Douglas, N.F., Johnson, R., Silverman, M., Azios, J.H. & Archer, B. (2023). Stakeholder-engaged research: What our friendship in aphasia team learned about processes and pitfalls. Topics in Language Disorders, 43(1), 43-56. https://10.1097/TLD.0000000000000302
Therrien, M., Madden, E. B., Bislick, L., & Wallace, S. (2021). Aphasia and Friendship: The Role and Perspectives of Speech-Language Pathologists. American Journal of Speech-Language Pathology, 30(5), 2228-2240.
Resources
Stroke Social Network Scale reference and materials: https://cityaccess.org/tests/ssns/
Aphasia Access Conversations Episode #119 - Finding the person in front of aphasia: A conversation with Lauren Bislick
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In this episode you will:
Learn about how the Aphasia-Friendly Reading Approach was developed. Hear about the importance of actively engaging care partners in therapy through this storytelling approach. Learn the importance of celebrating stories and how to host your own version of a Waffle Night.Katie Strong: Welcome to the Aphasia Access Aphasia Conversations Podcast. I’m Katie Strong, a member of the Aphasia Access Podcast Working Group. I'm also a faculty member at Central Michigan University where I lead the Strong Story Lab. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Harold Regier and Dr. Erin O’Bryan. We’ll be talking about the Aphasia-Friendly Reading Approach that Harold developed for his wife, Rosella, who had aphasia and how Dr. O’Bryan took this approach into the lab to refine it for clinicians to use in sessions.
Before we dive into the conversation, let me share a few details about our guests.
First a bit about Harold. Harold R. Regier, B.S. Ed., BDiv. Theol., is a retired minister with a career path in programs addressing social justice issues. In retirement, his spouse, Rosella, had a stroke resulting in aphasia. His passion shifted to becoming an aphasia care partner focused on helping to recover language and communication skills. He is the author of “A Decade of Aphasia Therapy,” subtitled “Aphasia-Friendly Reading: A Technique for Oral Communication,” published in 2021.
Our second guest is Dr. Erin O’Bryan. Erin is an Assistant Professor in the Department of Communication Sciences and Disorders at Wichita State University, in Wichita, Kansas. Her major research, teaching, and clinical interests focus on helping people with aphasia communicate through scripts, stories, and phrases and teaching students and care partners how to support communication. Dr. O’Bryan directs the Wichita Adult Language Lab whose current projects focus on supported storytelling and Melodic Intonation Therapy.
Welcome Harold and Erin. I’m looking forward to our conversation today.
Erin O’Bryan: Thank you, Katie! I’ve been listening to Aphasia Access Podcasts for years, and so many of my heroes have been interviewed in this series. It is really an honor that you invited Harold and I to be on the podcast today!
Katie Strong: I am so excited for our listeners to hear about how the Aphasia-Friendly Reading Approach was developed and expanded. This work is near and dear to my heart – particularly in this unique way of developing and telling stories. I feel compelled to disclose to our listeners that I am grateful to have been involved in this work as it was refined for clinical environments. So, I am going to come right out and say, this is my bias. Harold, I’m a big fan of yours and the Aphasia Friendly Reading Approach and of you Erin for how you brought this approach into the lab and studied it so that clinicians can use this approach.
So, now let’s get started! Harold, can you share a bit with us about how the Aphasia-Friendly Reading Approach came to be?
Harold Reiger: Sure. Thank you so much, Dr. Strong, for the privilege of being here to share just a bit of our story. You know, Rosella and I would have celebrated our 65th wedding anniversary if she had stayed with us just a few weeks longer. We had a very long and very happy marriage. She used to kid me, “We've been together so long we know what the other person will say before he or she says it.” Well, actually, aphasia kind of shattered that theory. But maybe there was a little bit of that was true. Well, anyway, Rosella was a retired public-school teacher with part of her career also involving children's curriculum development. She led many workshops, was a storyteller, and was a frequent guest speaker. Communication and broad coalitions were a strong suit for her.
So, aphasia, loss of language was a huge loss for her. Perhaps that sets the stage for working so hard to restore some major storytelling. But I'm sure this is the same kind of feeling that every person who is a care partner with the person with aphasia has. How did we discover a technique for storytelling through oral reading? Really, I think I just stumbled into it. The cues came from Rosella. She could say many words. She had a strong voice, but she did not put words together in a way that made it possible for a listener to understand what she meant to communicate. So, I was highly motivated, wishing there was a way to help her tell her stories.
Looking back, I now can see three of what I call ‘indicators’ that led me to the technique that I eventually called Aphasia-Friendly Reading. They were painting, reading, and church liturgy. So let me explain. Indicator number one, completely on her own, Rosella began to paint. Just shy of two years after her stroke, Rosella began to paint. She painted for four years. She painted 250 paintings. The choice of her subjects were all hers. Objects, scenery, flowers, roadside sightings, trips and vacations, past memories. And yes, stories, family stories, stories that she didn't have words to tell, but she could tell them with a brush. She gave every picture a title or caption, signed it, and dated it. And somehow she found those one, two, or three words to intelligibly, that is accurately, identify the picture that she had just painted.
But after four years of painting those pictures, she put her paintbrush down, never to pick it up again. And yet I kept remembering that she was able to identify pictures accurately using those few words to explain what it was that she was telling with her pictures. But then indicator number two came, reading periodicals and books. She underlined periodicals with many circles, much underlining. For a long time, Rosella delved through as many as 40 or 50 books per month. She turned every page, but did she understand what she was reading? Frankly, I often wondered and doubted it.
One day, Rosella was reading orally beside me, and I pressed my iPhone video button. Listen to just a few seconds of that reading. And while you listen, think of two questions. Could you understand what she was reading? What was the story that she was trying to tell? And secondly, do you think that Rosella was understanding what she was reading? So listen to that clip.
Excerpt of Rosella reading from a book.
You heard Rosella reading the story of she and her sister, Anna Grace, requesting radio station KNEX out of McPherson, Kansas to surprise their mother by playing it for her birthday. It was a song that the girls knew that their mother loved. And you heard her read those words, “I love those dear hearts and gentle people.” And then as she continued reading the lyrics of that song, she exclaimed, “Oh, Harold”, which was her way of saying how excited she was to recall that particular story. Now, that explanation, of course, was not in the book.
Then there was a third indicator that I recognized, and that was liturgical reading. One day in church we were reading a call to worship displayed on the screen. We were reading responsibly with the leader reading the first line and the congregation reading the second line. I glanced to my side and was surprised to see Rosella reading with the congregation. Maybe it was only the first three or four words of the line, but she read these words accurately. A light went on in my mind. Might this be a hint of how to help Rosella participate in oral reading? Short sentences read with a co-reader who read every other line and written in an easy to follow format? And so I adapted various psalms into very short lines formatted for us to read responsively. I read the first line, she read the second. The result was amazing success. Let me just illustrate by us reading just a very short psalm for you.
This is Psalm 150 that Rosella and I will read together.
H: Praise the Lord!
R: Praise God in his sanctuary.
H: Praise God in his mighty firmament.
R: Praise Him for his mighty deeds.
H: Praise the Lord for his greatness.
R: Praise him with the trumpet.
H: Praise him with the lute and harp.
R: Praise him with the dance.
My thought then was, could we try to write other stories and read them in what I began to call Aphasia-Friendly Reading format and style? And so, I began in earnest to try to write other stories. Short sentences, familiar words, larger font. Each line considered a sentence, even if it was only one word. Label the first line H for Harold and the second indented line R for Rosella. As I started reading and continued to read every other line, this could set the tone, the rhythm, and the pattern for saying every word clearly. I thought it was time to try. And then I began to wonder, is there a setting that we could read stories to others? Could we create an audience in some way?
When COVID hit, of course, I could not see Rosella in person anymore, for an entire year we were separated. And the only contact we had was FaceTime telephone calls. And those were really a disaster because we found it very difficult to communicate with each other when Roselle was not able to understand me and I wasn't able to understand her, except when we read Aphasia-Friendly stories.
And so, I wrote many stories during that year. And we read those stories then as our connection during our FaceTime calls. And somehow we were able to survive COVID. But it was after COVID then that we were able to again get back together occasionally. And I would bring her back to my apartment. And there I would invite friends, usually a couple or two individuals to come over and I would serve waffles. I'm not a kitchen person, but I could make waffles. So, we'd have a simple meal, a simple supper that we could visit with each other and talk about anything that we would like. And Rosella almost always simply said, “I remember exactly”. Because as others told stories that she was familiar with, she could comment that way. Otherwise, her conversation skills were not there. So that was our first hour that we would spend together simply informally visiting with each other. And the second hour that we spent together, we would go to what I would call “my theater,” our living room with a 50-inch television. And there we could read Aphasia-Friendly stories. I would stream the story to the television set. I would have them formatted so that there would be an H for Harold, an R for Rosella, and we would read the story so that the folks who were listening and watching could see the story as well as hear the story. And if we made any mistakes, they could make the corrections in their own mind.
There was a way that she was able to, again, participate. It's worth telling. But there was one waffle evening when she turned to me, and said, “China”. I knew she had a story in mind, but her look said, “you tell it. I can't do it.” And so, I did. It was a story about a cracked tea cup And so I decided certainly next Waffle Night we need to let her help tell that story of the cracked tea cup. Here is that story.
Cracked Tea Cup.
H: This is as story of a cracked tea cup.
R: Harold and I were youth sponsors.
H: Rose was one of the youth.
R: Winifred was her mother.
H: She invited me to her home.
R: “Thank you,” she said.
H: “Thank you for being Rose’s sponsor.”
R: We visited.
H: Before leaving, she said
R: “Let me pray for you.”
H: It was a pray of blessing…
R: …for our work in Mississippi.
H: Then she added,
R: “Wait!”
H: “I have something for you.”
R: She got a tea cup.
H: Erland brought it to me from China.
R: It’s cracked.
H: Put it in your china cupboard.
R: You’ll never use it.
H: “But you’ll remember be when you see it.”
R: Sixty years are gone.
H: This tea cup is still in my china cupboard.
R: And I remember Winifred.
H: It reminds me
R: Of the grace,
H: Of the affirmation,
R: Of blessing,
H: Of the seminary president’s wife.
And so those Waffle Nights became the favorite parts of our week when we could spend time with friends and Rosella could be part of the conversation by reading stories together with me.
Katie Strong: So beautiful! This is really just a fabulous way of having such a natural thing, a shared meal, a celebration to share stories. And it sounds like everybody enjoyed Waffle Nights. So, thank you for sharing, Harold. Erin, I was wondering if come into the conversation a bit more and tell us how you got involved with Harold and the Aphasia-Friendly Reading Approach?
Erin O’Bryan: Thank you, Katie. Even though I've heard Harold's story so many times, I still get teary every time I hear him talk about their year of not being able to see each other during COVID and the Waffle Nights that were just so wonderful. So, I met Harold in 2019 when I first became an Assistant Professor after 10 years of working as an SLP in healthcare. And Wichita State already had a weekly aphasia group, and I couldn't wait to meet the members. So, I went to aphasia group and there I met all of the care partners in the observation room and Harold showed me a video of him and Rosella reading a story together. I had been watching Rosella in the aphasia group and I'd seen that most of her utterances were short one- to two-word phrases and that much of her communication was nonverbal. But then in the video, she was reading full sentences aloud, taking turns with Harold. And what really struck me was that she was so motivated and happy to read the story.
I was so impressed. Harold asked me, “Do you think that other people with aphasia could benefit from doing this?” So many thoughts were running through my mind as we were having this conversation. Earlier in 2019, I had visited Audrey Holland, who was one of my mentors when I was in grad school at University of Arizona. And we'd actually set up this meeting through an online Scrabble chat. She invited me to her home.
Katie Strong: How very ‘Audrey’.
Erin O’Bryan: Yes, it was lovely. And I got to visit her with all her kitty cats. So, I asked her advice because I was applying for an Assistant Professor position after 10 years of working in health care. And I remember that she was so excited about her speechpathology.com video series and the related book that she was working on with Roberta Elman that she liked to call the Social Imperative of the LPAA, which I believe is the subtitle of that book. And Katie, I think you were a part of both the video series and the book.
Katie Strong: I was, yes.
Erin O’Bryan: Well, Audrey just loved that. She was so excited about that, and she told me to learn everything I could about the LPAA. And she said, “I must join Aphasia Access.” She said, “that's where all the important work is happening.” So that year I listened to loads of Aphasia Access podcasts, and I got very familiar with the Chapey and Colleagues LPAA Values chapter.
So then as I'm sitting there talking to Harold, I'm thinking about the LPAA value, everyone affected by aphasia is entitled to service. So, I mean, who is affected more than a spouse? So definitely I was thinking about having the care partner being involved seemed like a wonderful thing. And I was also thinking that Harold and Rosella's approach shared so many similarities with Script Training, which I have loved and have been using in healthcare care since grad school. And there also are similarities with ORLA and Multiple Oral Rereading. And all of these are evidence-based treatment approaches. So, I felt pretty confident that Aphasia-Friendly Reading could be a very valuable intervention. So, I said to Harold, “I'd like to try using your approach with other people with aphasia and their care partners in our clinic”. And Harold was happy for us to try it.
Katie Strong: I love that. I love that. And just for our listeners, we'll put some links and references in the show notes for some of the approaches like ORLA and Script Training that Erin has mentioned in addition to Harold's book and some other some other resources too.
Erin O’Bryan: Yes, thank you, Katie. Those are all wonderful resources for people to be looking at. So, my grad students and I started a pilot study with a woman with aphasia and her husband. And they were actually friends of Harold and Rosella's from their aphasia group. We use the pseudonyms Cora and Dave when we describe them in our papers. It became clear that we needed to make a few adaptations to Harold's approach for use in the clinic. For one thing, I wanted the person with aphasia to have the largest role in selecting the story topic and deciding what she wanted to say. For our first session, we asked Cora and Dave to bring ideas for a story that Cora wanted to tell. And we also suggested they consider bringing some related photos. In our first session, Cora, Dave, my grad student, Addison, and I all sat around the table and together we brainstormed about the story. Cora wanted it to be about a Caribbean cruise that she and Dave had gone on. She brought photos from that trip. Dave helped with supplying names and information about places that Cora wanted to talk about. Places from their shore excursions, such as having their picture taken with a donkey in St. Thomas and visiting the Bomba Shack on the island of Tortola. We got Cora's feedback on every line that was proposed, fine-tuning the story until Cora liked every line. And we also adjusted some of the lines to make them easier for her to say. So once Cora and Dave were happy with the story, we helped them practice during our sessions, one hour per week with my grad student, Addison and I at the clinic. And we gave a printout of the story and a practice log to record notes about their home practice.
In this first pilot project, Cora and Dave practiced their story for eight sessions until Cora said she was ready to plan their story sharing celebration. Then they shared their story with their friends in aphasia group. And the clinicians and the other people with aphasia in the room were just amazed. And other people in the aphasia group said, “I want to do that!” So, after two people with aphasia and their care partners did Aphasia-Friendly Reading projects, I wrote a manuscript reporting the pilot results. And Katie, I had seen online that you were an editor of Perspectives at the time. So, I emailed you my manuscript and asked if it was appropriate for Perspectives. And you emailed me back and said, “let's meet online and talk about it.” I was so delighted that you were interested in my project. You suggested that I consider exploring the value of the intervention by interviewing the participants. And I didn't know anything about qualitative research. But, Katie, you helped me write great interview questions for the care partners. And you helped me learn thematic analysis so we could find the themes in the care partner's quotes. And so, after learning from you, I have come to love the thematic analysis process. I really think it leads to deep listening.
What we learned from the interviews is that the care partners felt empowered by being included in the intervention and the care partners really valued the collaborative nature of the storytelling project and especially that the intervention was so different than the previous therapy experiences that they had had because it was person-centered, it was fun, and they got to share their story with other people in their lives. So, then the three of us, Harold, Katie, and I wrote our first article about Aphasia-Friendly Reading and it's published in Aphasiology and the title is, “I wasn't just sitting there”: Empowering care partners through the Aphasia-Friendly Reading Approach. And then in 2023, the three of us went to Boston and presented it at ASHA.
Katie Strong: Thanks for sharing that, Erin. You know, I think the experience of the care partners saying that therapy was fun important to note. And Harold has mentioned that Rosella thought it was fun, and the other participants thought it was fun. And I guess I just want to bring home that hard work can, can still be fun or therapy can be fun. And especially when it comes from the person with aphasia and their care partners. The topics are generated by the client and care partner. They're sharing things that are really important to them that have happened in their past. I love it.
Erin O’Bryan: And one of the care partners even said that they learned better when it was fun.
Katie Strong: I love it. Fantastic. Erin, I was wondering if you could share some tips for clinicians who might be listening that are thinking about how they might be able to incorporate this Aphasia-Friendly Reading Approach into their practice.
Erin O’Bryan: Thank you for asking, Katie. So, in the past year, you and I have been talking about how we want to make it as easy as possible for clinicians to use our storytelling approaches in regular clinical settings, outside of research. And we really want clinicians to realize that it takes almost no time to prep for a person-centered storytelling session. You just have to go into the session ready to actively listen to what the person with aphasia wants to say. I love the acronym PULSE that you and Barbara Shadden wrote about in your paper, The Power of Story and Identity Renegotiation. And then in our paper, we reviewed PULSE again. So just for our listeners, I'm going to go through it real quickly because I think these are great things for clinicians to keep in mind.
The P in pulse is for partnerships, partnering with the person with aphasia. And in the case of Aphasia-Friendly Reading, the clinician partnering with the care partner also.
The U in pulse is for uniqueness. So, the clinician should be prepared to help the person with aphasia tell their unique story.
The L is for listening. The clinician needs to learn how to really listen.
And S is for supporting the person with aphasia in telling their stories. For example, using communication ramps in Supported Conversation for Adults with Aphasia strategies to support communication.
And then finally, the E impulse is for explore. So as a clinician, be ready to go off-road with your client to explore the story that they want to share. And as a clinician, know that it's okay, even it's great for you to do that.
Katie Strong: I love that. I love that. Erin, I guess that leads us into sharing that we do have a paper that came out in 2024 called Person Centered Stories on the Main Stage in Intervention, which highlights examples from three different story projects, including Aphasia-Friendly Reading. So, we'll link that to the show notes as well.
Erin O’Bryan: Yes, and this year at ASHA 2024, Katie, you and I are going to be also giving a talk about this work called Elevating Person-Centered Stories to the Main Stage in Aphasia Intervention. And we are looking forward to presenting this work hopefully to an audience of clinicians.
Katie Strong: Yes, yes, we hope to see folks in Seattle for sure. Well, I want to bring back both Harold and Erin into this conversation. And I think one of the things that I've recognized through this collaboration that you and Harold and Rosella and later on I got to be a part of is that we really are all better together. And I was hoping each of you could take a moment to share how this work has changed your thinking or maybe some ideas about sharing with others about what you've learned from this collaboration.
Harold Regier: Well, for me, one of the things that I think I really learned from this is that we care partners need the therapist and the therapist needs us care partners. And there are more ways in which we can work together than perhaps sometimes we have done it when we have just been sitting there. And so, I really, I'm so pleased to be able to feel that that we care partners are more involved or can be more involved in the whole therapy process than what so often we have been. But I think that one of the things that the therapist needs to help us understand is when is it appropriate for us to be part of the process and when it is not appropriate for us to be part of the part process. It's not a matter of us being there all the time and sometimes being in the way. So, I think that kind of very frank candid conversation with us would help us understand that. And I certainly understood better that that the role of the care partner in terms of helping the person with aphasia be able to communicate better is very different from the role of the therapist.
I never tried to be the person who was the teacher, trying to let Rosella know how she should do better and how we might be able to improve our reading. We just did it and it came out the way it came out. But then when I see how Erin was working with other clients and the persons with aphasia and the family members together identified the stories that they were interested in putting together, and the therapist helped put that together into words that they then could repeat or share together and in a storyline, that that is the place where I think we can be so much more collaborative with the therapist in a process like that. So I just always was telling myself, “Don't be a therapist. Don't be a teacher. Don't try to say, well, you can do better than that. Just simply do what is natural.” And then I wish that the therapist would take the other role and really work hard to help the person with aphasia do better with their reading and their performance. We didn't do our reading for production. We did it for fun, as you were saying earlier. And then we did it because we wanted to share that fun and that experience with others. And that was so very, very satisfying for us. Those are some of the thoughts that have come to me in terms of the relationship between therapist and care partner.
Katie Strong: Thanks Harold. Yeah, Erin, any thoughts?
Erin O’Bryan: I've learned so much from this collaboration. From Harold, I learned what a difference it makes when a care partner puts so much time and thought into supporting their partner with aphasia's communication and her quality of life. Also I've seen how much Harold has done and I hope that me you know as a busy professor stopping and taking the time to tell him that I saw so much value in what he was doing at home with Rosella reading those videos together. I hope that this helped him realize that it was valuable to share. And I'm thrilled to say that Harold has been going around the state of Kansas giving talks about aphasia at colleges and senior living facilities. He's doing so much and I love to see that. And from collaborating with you, Katie, I've learned the importance of making the story sharing a really beautiful celebration honoring the person with aphasia and you know bringing special things like favorite food treats, beverages, flowers, and especially inviting the people that are important to the person with aphasia. We've now had five or six story sharing celebrations. It seems like everyone is more beautiful than the last. I've learned so much about that. And I've also learned that qualitative research helps me capture the meaningfulness of these projects and the meaningfulness as we're working with people with aphasia and that this research can be so fun and rewarding.
Katie Strong: I love that. I love that. As I was listening to you, Erin, respond to Harold, it just sounds like together we can validate one another. The work that you're doing, you were doing with Rosella, Harold is very validating and then Erin bringing it into the lab to test it out and it's all beautiful. It's, it really is. And I guess as I reflect on this thought about what I've learned is to reiterate, Erin, something you said, that listening to family members or care partners and the ideas that they have to engage their loved ones in communication activities are so powerful and taking that time even if you are busy to listen and think and validate and see how that connects to the existing evidence-based literature. I think is really powerful. But I also think that there's this collaboration and the combination of care partners and clinicians and researchers. And of course, the person with aphasia at the center of all of that, making a powerful team to develop innovative methods of storytelling is really one of my big takeaways from all of this.
Erin O’Bryan: Yes, that's wonderful.
Harold Regier: I would like to give kudos to the therapists who worked with Rosella over the many, many years. Ten years of aphasia therapy, four of which were one-on-one, six of which were part of a support therapy group. Those therapists were such relational people, such encouraging people, and also knew the techniques that work in therapy. So, I wanted to say that those years were very, very meaningful, very, very helpful, and helped us with the day-to-day kind of living with hope, with the expectations that things can continue to get better.
Katie Strong: Thank you, Harold. Yeah. Erin, any other thoughts as we wrap this up today?
Erin O’Bryan: Well, I just wanted to say that I would never recommend that all intervention involve the care partner because I understand that it's good for the person with aphasia to get one-on-one time with the clinician. But don't forget that that care partner is often with the person with aphasia almost 24/7 and we may only see them one or two hours a week. So, it's so important that we do more to really educate the care partner about how to acknowledge the competence of the person with aphasia and really how to support their communication. So that's why I really want us to do more with in involving the care partner and in intervention. So, I'll get off my soapbox. Thank you, Katie, for letting us share about this project that I love.
Katie Strong: I'm so delighted that we could have this time together today. Harold, thank you for your generosity and sharing your ideas and Rosella's stories with us and this beautiful work of Aphasia-Friendly Reading and Erin for your work in the lab and bringing it to the clinic.
On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show, please see our show notes. They’re available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. For Aphasia Access Conversations, I’m Katie Strong. Thanks again for your ongoing support of Aphasia Access.
Contact information for Guests –
Harold Regier [email protected] Erin O’Bryan, PhD., CCC-SLP [email protected]Resources
Aphasia Institute’s Introduction to Supported Conversation for Adults with Aphasia (SCA™) eLearning. https://www.aphasia.ca/health-care-providers/education-training/online-options/
Chapey, R., Duchan, J. F., Elman, R. J., Garcia, L. J., Kagan, A., Lyon, J. G., & Simmons-Mackie, N. (2000).Life Participation Approach to Aphasia: A statement of values for the future. The ASHA Leader, 5(3). https://doi.org/10.1044/leader.FTR.05032000.4
Cherney, L. R. (2010). Oral reading for language in aphasia: Impact of aphasia severity oncross-modal outcomes in chronic nonfluent aphasia. Seminars in Speech and Language, 31, 42–51. https://doi.org/10.1055/s-0029-1244952
Cherney, L. Babbitt, E., Oldani, J., & Semik, P. (2005). Efficacy of repeated choral reading for individuals with chronic nonfluent aphasia. [Clinical Aphasiology Paper] http://aphasiology.pitt.edu/1548/
Kaye, R., & Cherney, L. R. (2016). Script templates: A practical approach to script training in aphasia. Topics in Language Disorders, 36(2), 136–153. https://doi.org/10.1097/2FTLD.0000000000000086
O’Bryan, E. L., Regier, H. R., & Strong, K. A. (2023). “I wasn’t just sitting there”: Empowering care partners through the Aphasia-Friendly Reading approach. Aphasiology. https://doi.org/10.1080/02687038.2023.2272956
O’Bryan, E. L., & Strong, K. A. (2024). Person-centered stories on the main stage in intervention: Case examples from the My Story Project, Aphasia! This Is Our World, and Aphasia-Friendly Reading. Perspectives of the ASHA Special Interest Groups. https://pubs.asha.org/doi/10.1044/2024_PERSP-23-00272
Regier, H. (2021). A Decade of Aphasia Therapy: Aphasia-Friendly Reading: A Technique for Oral Communication. Independently published Available on Amazon
Strong, K. A. & Shadden, B. B. (2020). Stories at the Heart of Life Participation: Both the Telling and Listening Matter. Chapter 5. In A. L. Holland & R. J. Elman (Eds.) Neurogenic communication disorders and the Life Participation Approach: The social imperative in supporting individuals and families (pp. 105-130) Plural Publishing.
Strong, K. A & Shadden, B. B. (2020). The power of story in identity renegotiation: Clinical approaches to supporting persons living with aphasia. ASHA Perspectives, SIG 2, 5, 371-383. https://pubs.asha.org/doi/pdf/10.1044/2019_PERSP-19-00145
Youmans, G., Holland, A., Munoz, M. L., & Bourgeois, M. (2005). Script training and automaticity in two individuals with aphasia. Aphasiology, 19(3/4/5), 435–450. https://doi.org/10.1080/02687030444000877
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Interviewer info
Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.
In this episode, Lyssa Rome interviews Elissa Larkin about her work to increase communication access within her hospital system via communication partner training programs and her dual role as a speech-language pathologist and bioethicist.
Guest info
Elissa Larkin, M.S., CCC-SLP, HEC-C is a Bioethicist and Research Speech-Language Pathologist at the Center for Aphasia Research and Treatment at Shirley Ryan AbilityLab. Elissa earned her Master of Science in Communication Disorders with bilingual certification (Spanish) at Arizona State University and completed advanced training in bioethics at Northwestern Medicine Center for Bioethics and Medical Humanities, subsequently earning national certification as a Healthcare Ethics Consultant. Elissa’s areas of professional focus include applications of ethical frameworks to promote patient rights and shared-decision making in rehabilitation practice, Life Participation Approach to Aphasia-centered research and treatment, and interprofessional education models to increase communication access and equity for all patients. Elissa received the 2023 American Speech-Language-Hearing Association Louis M. DiCarlo Award for Recent Clinical Achievement for her work in communication access education and advocacy.
Listener Take-aways
In today’s episode you will:
Understand the theory behind implementing communication access strategies at the institutional level in a variety of practice settings. Learn about some techniques to effectively teach supported communication to colleagues from different disciplines. Describe the impact on patients and rehab professionals of communication access.Edited Transcript
Lyssa Rome
Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech-language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Elissa Larkin.
Elissa is a bioethicist, certified healthcare bioethics consultant, and research speech language pathologist at the Center for Aphasia Research and Treatment at Shirley Ryan AbilityLab. She's also certified as a bilingual English/Spanish SLP. Her areas of professional focus include applications of ethical frameworks to promote patient rights and shared decision-making in rehabilitation practice, Life Participation Approach to Aphasia-centered research and treatment, and interprofessional education models to increase communication access and equity for all patients. Elissa received the 2023 American Speech Language Hearing Association Louis M. DeCarlo award for recent clinical achievement for her work in communication access education and advocacy.
Elissa, I am so glad to be talking to you today. I'm really excited for this conversation.
Elissa Larkin
Thank you so much. Lyssa, I'm very excited too.
Lyssa Rome
I thought we could start by having you introduce yourself a little bit more.
Elissa Larkin
Okay, sure, as you said, my name is Elissa Larkin. My pronouns are she/her/hers. In terms of positionality, I am a white, cisgender, middle aged woman, and before we really jump in, I also want to acknowledge and describe the context I work in—as a very resourced research and rehabilitation hospital. I want to explicitly recognize that because a number of things I'll share were made possible by very generous mentors and institutional resources that I know are unique and not necessarily available everywhere. I'll try to offer examples from my experiences, and really hope there will be things people can pick and choose pieces from that may fit where they practice.
Lyssa Rome
Yeah, and having spoken with you about this, I think that there are things that clinicians in a variety of contexts will be able to take away. So you have this really interesting background in bioethics. It's unusual for people in our field, and I'm curious, how did you get there? Why did you decide to do that bioethics training, and how has that informed your practice?
Elissa Larkin
Thank you. What a wonderful question to start with, and I'm grateful for the way that path unfolded. In my clinical practice, as an SLP, I think it was often issues of justice that motivated me the most, alongside my patients and families. We have a very active and engaged ethics department within our hospital, and so I got to partner with the ethicists at times on cases where there were issues that arose for some of my patients with communication disabilities. I was fascinated by how the process worked and how much patient rights and preferences were really centered very genuinely.
At some point, I had the opportunity to do more training in a program that was designed for practicing clinicians—it was like, part time, over two years—arose, and I jumped at it. It was a wonderful grounding, kind of a broad overview and foundation of bioethics, principles and philosophies, theories, frameworks. And I felt like with each reading and class, honestly, Lyssa, I just there would be aha moments where it was like, ”Oh, there's a name for that thing that I've been experiencing.” Or, “Oh, this method of approaching a really complex, gray situation really helps make sense of it and gives you more of a place to start.” I think sometimes in clinical practice, we can feel really swept up in all of these complex things happening. And we want to do something, but it's hard to know where to start or how to even make sense of everything that's going on. I just felt like the clinically oriented ethics training program really helped me with that. And then the more I studied it, the more I wanted to do something with it.
It happened that when I finished the program, the ethics department within my hospital had someone retire from a part-time position, and so I threw my hat in the ring for that, and they hired me for the part time role. They took me on, basically, and provided me kind with an on-the-job fellowship for more of the clinical bioethics practice. And it's just been a really meaningful learning process.
Another piece I think that is important for me is that the program, the Donnelly ethics program here, was founded in 1995 by a physical medicine and rehab physician who's also a disability rights advocate. That very much informed the shape of the program and just how it was embedded in our hospital system, how it operates, and certainly how I was then trained. And so it just really aligned with my own philosophy as an SLP, and there's just been a lot of dovetailing.
As I said, the bioethicists on the team before I joined, none of them were speech pathologists. One has a legal background. There was a neuropsychologist, and then a PhD bioethicist, more academically trained. But they would partner with primary SLPs when the patient needed communication accommodations. Once I came onto the team, there was also a lot of openness. They really embraced my expertise, and I've gotten to work on most of the cases where a patient needs communication accommodations. And they've also really embraced learning these strategies themselves, implementing them. None of my colleagues go to consults now without a clipboard and a Sharpie.
Lyssa Rome
Wow, which is just living the dream.
Elissa Larkin
Yeah, they're doing it. You know, they're really embracing it.
Lyssa Rome
You've talked just now about how communication access is a part of the ethics work that you do, right? And it's part of what you think about as a bioethicist. And so I'm wondering how that ties into the work that you've done in trying to broaden access within your hospital system, and maybe you could talk a little bit about what you have done to broaden that access?
Elissa Larkin
Sure. Yeah, so communication partner training has become really central to my practice, and this is a place where I think mentorship is a really important part of my story. I work in the Center for Aphasia Research and Treatment. Leora Cherney is the director of the center, and she has been a mentor to me since before I joined the center, when I was a full-time clinician on the floor. She's someone who makes herself very available to SLPs throughout the organization, and so she provided guidance and support when I was learning about communication partner training and wanting to figure out a way to address things more broadly, as you said.
I think for a long time we have been giving our colleagues fish. You know, it's like we share a patient who has communication needs, and they ask us for advice and modeling to accommodate that one patient's needs. And we do that, and it helps that one patient.
And at some point I realized I wanted to teach people to fish. And so I started thinking about how to do that, and I sort of had this incremental from sort of like mini shoestring projects with a colleague on the floor. We both went to a Supported Communication for Adults with Aphasia, presentation that our colleague, Edie Babbitt, also a generous mentor, gave for our institution as a course. She had gone to the Aphasia Institute and done the Train the Trainer certification. And my colleague and I walked out of there and said, we have to do something like this on the floor. We have to do it more than how we're just doing it in a mini way, within the one hour we get for family education before someone discharges. We need to do something more dedicated.
So my colleague Julie Carpenter and I developed this one-hour training for patients and their care partners, family, friends, whoever could come. We offered a full hour just focused on that, and that sort of began my process. Once we had success with that. We could, I mean, you could see the care partners learning to fish. I wanted to learn more. I wanted to learn how to do it better. I wanted to learn what was behind these trainings in theory. And so I asked for support from the hospital to also go and do the Train the Trainer certification at the Aphasia Institute. And they said, “Yes, as long as in return, we'll ask you to also do a webinar for us.”
My grandmother was a career middle school teacher for over 30 years. She always said, “The best way to learn something is to teach someone else.” So I think the combination of preparing and delivering that webinar and going to the Aphasia Institute and learning just what I was looking for: the theory that was behind things, what they've learned over time, really from experts, and learning their system, helped really grow my knowledge and skills and sort of overall mindset of how to tackle this problem, this big problem, and maybe a bigger way take a little bigger chip out of it.
One of the things that in that Train the Trainer experience that really struck me was they challenged all of us to think about the communication environments where we practice and the systems they're in, and look for opportunities to embed communication partner training. And for me, when I did that, I thought about our clinical ladders program, or professional development structure. You know that clinicians kind of enroll in and take these different electives to grow their skills, but it's in this sort of structured, supported way within the hospital.
We already had a champion model, which is an implementation science model, a way of spreading knowledge and skills more broadly, sort of clinician-to-clinician. And I thought, what if we could have a champion program for communication strategies or communication accommodations? And I started working on that. And again, I went to Leora, who was very supportive and helped me think through how to structure it, and we pitched it as a pilot. In 2017 Edie Babbitt also mentored me in that program. We sort of thought through a curriculum of, how could I try to take what I learned from the smaller communication trainings I'd done and do it in a broader way and over more time.
So it's a year-long program for rehabilitation clinicians, and it started with four clinicians, a small group, but we had all allied health disciplines, represented SLPs, OT, PT, and all levels of care within our organization. We had two inpatient clinicians, an outpatient clinician, and someone from our day rehab program.
Throughout the pilot, the things that I really tried to center in the curriculum were practice—hands-on practice—opportunities to reflect: How did that go? What might you do differently? You know, we video record it, watched video recordings, discussed. And then also, opportunities for clinicians to apply it in their own practice and reflect on that too.
So, you know, the idea was kind of, I did the initial Supported Conversation for Adults with Aphasia training in the beginning, and that was sort of foundational. And then each time there were two months or so in between meetings, and their job was to take what they learned in the meeting and go put it in a practice with their patients. And they kept a log of just like once every couple of weeks, one example where they used communication accommodations with patients. And how did it go? What was the clinical context? What did you do? How'd it go? And that was the fuel for the discussion to start the next meeting off, we'd all come back and share. I borrowed a phrase from a community member with aphasia who runs his own community group. He always starts with thorns and roses. And so that's what we would do in Communication Champions. You know, “What's been challenging and what's going well?” And then also we would problem solve together. If someone brought a challenge and said, “I could really use help,” we would talk about it.
For me, something that was really rich about the experience was I learned a lot too, of course, especially from hearing how clinicians in other disciplines would tackle the problem. Once they have foundational knowledge, sometimes they approach something differently than I would as an SLP, in a way that I thought, “Oh, yeah, I think that'll work better. That totally makes sense.”
We all learned a lot through that part of the process. So I think the program gives that foundational knowledge. They put it into practice. Halfway through, their job changes to focus on mentoring others. So they do a case study presentation to all their teammates, and kind of launch themselves as a Communication Champion. So they're presenting about a patient, hopefully the whole team kind of knows, so it's really relevant and engaging, is the idea. And they emphasize the communication accommodations they used in clinical practice and the impact that it had. And then they tell their teammates, “I'm in this program, I'm learning these skills, and I can be a resource for you.”
And then the program really ends in helping the trainees get to a point where they're then thinking more broadly. We go from the examples of communication accommodations for patients with aphasia to other diagnoses, because people are in the program from all over the organization, we're working with very different patient populations, sometimes so accommodations for a person with locked in syndrome, accommodations for someone on a vent, all the different varieties, cognitive-communication accommodations, and then they think about the communication environment where they practice.
There's a wonderful article by Robin O'Halloran and colleagues from 2012. It's a metasynthesis of surveys done of various stakeholders, including patients with aphasia in an acute care setting and providers, as well as family members I believe, and collecting their input on communication facilitators and barriers. And then, you know, they came up with these six different categories. And so we read the article, and then the champions look at the environment where they work, because we know it can vary a lot across just one organization, which says a lot about how varied our patients' experiences can be, as well. And they break it down, what are the facilitators in my environment? What are barriers? And then we talk about it—is there any low hanging fruit? Are there any barriers that you could address that would be pretty easy to remedy, and are there any that would be really impactful to address?
And some of those trainees actually have gone on to do a project to address some of those barriers. We added a Communication Champions level two, where once you complete the program, if somebody wants to do basically an independent project, they can request support. And, you know, I provide mentorship if needed, I just support them however I can. And there have been some really neat things that have come out of that, too.
Lyssa Rome
It's amazing. It sounds like you've developed a really rich program, and I'm curious about how it's been received, what kind of feedback you've gotten from the people that you've trained in the hospital.
Elissa Larkin
Thank you. Yeah, every cohort I end with direct feedback from the trainees about the program, all aspects: “What went well? What could be better? Anything else we should add?” And one thing that consistently people have said is that the practice is really valuable. We have actually partnered with community members with aphasia. I've neglected to mention this is all over Zoom at this point, which makes it accessible for people from all parts of the hospital and for our community members.
So the practice, rather than role plays with each other, our community members with aphasia, Zoom in and have conversations and give direct feedback. “You did a good job speaking slowly.” “Could you write more for me?” Things like that. And the clinicians have said that is not only really helpful, it helps them build confidence, and it feels really meaningful. And the community members have been so generous with their time, and they have also said they feel like not only is it fun for them, they also find it meaningful to feel like they're training clinicians who are going to work with other people with communication disabilities and maybe make things more accessible for them. So that's been, I think, a really important part of the program, and I'm so thankful that our community members are always up for being a part of it and giving their time that way and expertise for that matter.
Lyssa Rome
What about other examples of how this has played out for the people who you've trained?
Elissa Larkin
Yeah, I have to say, clinicians have shared some really powerful examples of what this has changed in their practice, and some of them might seem kind of simple like I had an occupational therapist inpatient who worked on a primarily neuro rehab unit, mainly with stroke survivors. She told me about this bathing session that she had with a patient with aphasia, and she was so excited to show me all the communication supports that she had created ahead of time, to walk the patient through what to expect, what the steps were, what her expectations were, to leave room for questions, all ahead of time. And then she said they had this extremely successful session.
I said, “What made it so successful? What did that look like for you?” And she said, “Well, the patient did what I knew she could do. The communication didn't get in the way. It felt really accurate. And it was an important piece of her getting ready to go home, which was also really important to this individual. And so that, to me, was really meaningful.”
I've actually had some prosthetist orthotists join the program as well. So, you know, they're making braces for patients and other kinds of things, and they have had some great stories about just really getting it right. One clinician said that he was working with this patient with aphasia, and he was writing all these options down, and he brought all these examples to show her, and he said she was really particular. She was a very put-together person, and she ended up choosing this, like, hot pink brace. And when he confirmed, like, “This is what you want?” She was just all lit up like, “Yes, this is exactly what I want!” You know, that is meaningful in his practice. He was so proud and excited to tell me that.
And actually, a couple of other people from the P&O department did the program last year, and this year, they're working on making the documents that they use in their department more accessible. So they've taken this on. Their manager totally is supporting it, and I'm kind of just supporting them. So to me, those are the signs that make me feel really hopeful, that the champion part of it is working. You know, I wouldn't even know that those barriers are there. That's not my field of practice, and for them to not only identify these issues, but start to feel like they can address them and improve things for their patients, and then have examples where it works. It's just been really exciting and rewarding.
Lyssa Rome
It's amazing to think about, sort of the ripples out from the work that you're doing within the hospital, and then also, ultimately, to patients and people who are in very vulnerable… I mean, you give the OT example choosing a brace, those experiences are so central for patients, and to be able to have such a broad impact by training people from so many different departments is really amazing.
Elissa Larkin
Thank you. And you know, just listening to how you put that, it made me think about again, some of the ethics terms that now bubble up for me are dignity. There was so much dignity preserved there and even uplifted for that patient during her bathing session. The personhood. The autonomy. And getting your brace exactly how you want it—if you're going to wear this every day, that's a big deal. I think, to be seen, to feel like you can advocate for yourself and your own care, because you're working with a provider who knows how to accommodate your needs.
I think in our field, there have been leaders who have planted these seeds of talking about communication ramps, really looking at the parallels between physical accommodations and communication accommodations. That's another thing in the Communication Champions program: Clinicians have said, “That really makes sense.”
A PT shared—she practiced in day rehab—and she said, “One day, it just dawned on me that the paper and the marker that is my patient's least restrictive device for communication, right? I would never ask them to walk without their walker. Why am I asking them to have a conversation with me without their tools?” And those are the times where it feels like, “Okay!”
I love that word ripples. I feel like there's a lot of empowerment happening in all directions. That's my hope, that the clinicians feel empowered, that when patients are interacting with providers who have this knowledge and these skills, and it's that the patients feel empowered too. And we know that it's complex. It requires ongoing adaptation. And so I hope that in talking about communication partnership, when clinicians are using the knowledge they have and they're trying, patients can partner with them. That's what we want. That's how we want it to be. You know, we're working for them. And we're working together, hopefully.
Lyssa Rome
Well, as you're describing that, it becomes so clear to me how ethics, how justice, and how access, are so deeply intertwined. So it's really clear that in both the ethics programs, and your work as a bioethicist in your hospital system, and the Communication Champions program, you're implementing those ideas, those sort of foundational values that I also hope are central to my practice. I mean, I think it's definitely something that I aspire to. And it's really impressive to me how you've put them into practice.
Elissa Larkin
Oh, thank you. I aspire to them too. Every day. All of this is nothing if not humbling, which is where we want to operate from anyway. Yeah, I'm thinking of one more little story. It might make me emotional to talk about it.
Lyssa Rome
Take your time.
Elissa Larkin
Yeah, thank you. It's a happy story. It's just… We have a program in our hospital for patients with locked-in syndrome, who’ve had brain stem strokes and the majority of whom are totally dependent communicators, mainly communicating with their eye movements, right? And I got to meet a patient with locked-in syndrome somewhat recently, who had a complex situation where he hadn't appointed a power of attorney for finances, and at that point he really needed someone to be able to help with those things.
We were asked to do a capacity assessment to see if he could appoint someone. Normally, we don't actually do financial power of attorney, but this was a disability rights issue. It was like, if we can't do it here, then he's not going to probably have another opportunity where the resources are there to complete it. So I partnered with a neuropsychologist who hadn't worked with people with locked-in syndrome before, but she was very familiar with the assessment process, and we were really careful about how we planned the questions and the structure and the flow to give this person his best shot at demonstrating capacity.
In the beginning, I was doing all of the communication with him and the spelling and the choices. But the neuropsychologist—we met with him three times—and by the third time, she held the board and was asking questions directly and helping spell things out. She actually, at times, I think, had a better angle for his eye movements. And it was just, he was just right on. They were in sync, and he totally demonstrated capacity. He indicated who he wanted, and had very clear rationale.
And so when we told him it was clear and he was going to be able to complete this and our team would help him do this and put it in place, he just let out the biggest sigh. And you know, in terms of communication that said so much. You can imagine all the other ways that could have gone, and what an impact that would have on that individual's life, who absolutely deserves to be able to choose who they want to help was such an important thing. And you know, we thanked him for working so hard to communicate with us and being so patient as we learned his communication system. And then he also had a smile, like he was able to just do this spontaneous smile.
You know, those two pieces of communication were just really meaningful. And after a debriefing with my colleague, she said she felt like she learned so much. She feels empowered to use communication accommodations, to reach out if she's working with someone who has different needs and she isn't sure. And that's how I want it to be. That's what I hope for. I hope everybody in the hospital, at some point, has access to training like this. Our security guards, they totally want to be able to do the same thing, right? Admissions folks. Everybody, wants to get to know our patients, to communicate with them in an equitable way. And I do think that having access to training is the answer, and having it tailored.
Lyssa Rome
What a moving story and how fulfilling that must be—both for the clinicians in other disciplines and SLPs too, I guess, who have learned how to provide access. It makes me wonder, as you think about what you've learned from having done this work, what would you like listeners to take away from having heard about the work that you've been doing?
Elissa Larkin
Well, my first thought is you're probably already doing more than you are giving yourself credit for. I think advocacy is kind of built into our practice in some beautiful ways. And I also think everyone should maybe do that same exercise that the Aphasia Institute folks suggested: thinking about the communication environment where we work, and thinking about the systems that are in place, and where there might be opportunities to offer our expertise.
I think that there have been a number of times where colleagues of mine have been so receptive. And, you know, I think there's a lot of trust already between us, the folks that we work with. And so I think if we can find opportunities to offer communication, accommodation, mentorship.
I also think the other piece that I've learned that is so important is—and this is in literature, too, I just have found it to be very true in practice—is tailoring. I have done communication partner training for our campus security, campus safety team. And I used very different examples for them. I talked to them first about when this comes up, what it looks like. It's got to be relatable. And I think that part of the brilliance of the SCA model and other models too, that include role play, is giving people a chance to put ourselves in the shoes of someone who has a communication disability makes all the difference. Then you get it, “Oh, that was really hard. And if I can make that easier for someone, I want to.” And then you got them. Then they're listening. Then they want those strategies. They want to learn the accommodations.
So I think offering our expertise, tailoring, and I think also, thinking about what scope feels reasonable. I talked about teaching people to fish. I also think giving people fish is really important—don't get me wrong.
I worked with a chaplain team also, and one of the chaplains said to me… I asked him, “Do you have any advice if colleagues of mine want to provide communication training to their spiritual care colleagues?” And he said, “You know, I would start with a shared patient and one chaplain, and then get that person to convince their colleagues to listen. And, you know, maybe you can give them some certain tools, or you could just even meet with them.” But I think all those small steps of bridge-building can be really impactful.
I've been thinking a lot about just disability rights history, and I think communication access is at a certain point in its evolution in terms of awareness. And I think all of us can contribute to raising that. It's going to take time and just a whole lot of us chipping away as we can, growing, learning, along with people with lived experiences, and advocating together.
Lyssa Rome
Well I hate to stop the conversation, but that's a really great note to end on. I just really appreciate your sharing these really powerful stories with us, knowing that, I think clinicians in a really broad variety of clinical settings can take some of this and put it into practice so that we can also bring justice and access to the people that we're working with.
Elissa Larkin
Thank you. I agree.
Lyssa Rome
Elissa Larkin, it has been so great to talk with you. Thank you so much for sharing all of this with us.
Elissa Larkin
It's been a pleasure to talk with you, Lyssa. Thank you for the opportunity.
Lyssa Rome
And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations. I'm Lyssa Rome.
SRAlab Center for Aphasia Research and Treatment link: https://www.sralab.org/research/labs/center-aphasia-research-treatment SRAlab Donnelley Ethics Program link: https://www.sralab.org/services/donnelley-ethics-program Leora Cherney was awarded the 2023 Aphasia Access (inaugural) Sandra O. Glista Mentorship Award (alongside the amazing Robin Pollens) Aphasia Institute Supported Conversation for Adults with Aphasia (SCA) training Dr. O'Halloran's article: O'Halloran, R., Grohn, B., & Worrall, L. (2012). Environmental factors that influence communication for patients with a communication disability in acute hospital stroke units: a qualitative metasynthesis. Archives of physical medicine and rehabilitation, 93(1), S77-S85. Dr. O'Halloran's related tool: https://www.pluralpublishing.com/publications/inpatient-functional-communication-interview-screening-assessment-and-intervention The Communication Environment Survey Tool (CEST) The CEST is Copyrighted. You are welcome to use, copy and distribute the CEST for clinical and/or academic purposes, with the following restrictions: You may not retitle the tool or remove or obscure the SRAlab name or logo, copyright notation or the reference information. You may not state or imply ownership or authorship of the CEST, apply your organization’s name or logo to the tool, or charge fees for access to the tool. You may not modify, enhance or otherwise create derivative works of the CEST without the written permission of SRAlab. If you wish to post the CEST on a clinic or academic intranet, please contact our legal counsel at [email protected] for permission to do so. -
Welcome to the Aphasia Access, Aphasia Conversations Podcast. I'm Ellen Bernstein Ellis, Director Emeritus of the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences, and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration and ideas that support their aphasia care through a variety of educational materials and resources.
Brief topic intro
I'm today's host for an episode that will feature Dr Felicity Bright. We'll discuss her research looking at factors impacting wellbeing, engagement and hope.
Guest bio
Felicity Bright is a registered speech language therapist and associate professor in rehabilitation at Auckland University of Technology in Aotearoa, New Zealand. Her research examines cultures of care, and in particular, how the cultures and practices in rehabilitation respond to the needs and priorities of patients and those who support them. She has a particular interest in stroke and in the needs and experiences of those with communication impairment through her work, Felicity seeks to support practitioners services and rehabilitation organizations and to provide better person centered care.
Listener Take-aways
In today’s episode you will:
Explore how qualitative research promotes the nuanced study of meaningful clinical practice Consider cultural differences in well-being and what this might mean for how we work with people with aphasia and their support networks Reflect on the importance of having discussions with patients about hope and well-being Discuss how culture and organizations impact healthcare practice for individuals with aphasiaShow notes edited for conciseness
Ellen Bernstein-Ellis Felicity, welcome to our show. Thank you for agreeing to be our guest today.
Felicity Bright Thank you for having me. It's great to be here.
Ellen Bernstein-Ellis Welcome Felicity. We’re going to start today with an icebreaker question. The one you selected for today is, “Do you have a favorite book or movie about aphasia?
Felicity Bright It was hard to choose one. Actually, I was just looking at my bookshelf and I went back to myself as a fairly new speech and language therapist quite a few years ago now. One that was really transformative for my practice was Talking about Aphasia by Suzie Parr and Sally Bing. It's a classic, but it was a beautifully written book that really opened my eyes to the experiences of people with aphasia beyond all the technical work that we'd learned in university and so on, but it brought to life the humanity of the people who have aphasia, and really helped me rethink why I do what I do, and what the real impacts of aphasia can be for people.
Ellen Bernstein-Ellis Yes, that's a beautiful book that brings that all to the forefront. And I want you to say the title and author again, in case I spoke over you a moment ago,
Felicity Bright The book is Talking about Aphasia and the authors are Susie Parr, Sally Bing and Sue Gilpin with Chris Ireland,
Ellen Bernstein-Ellis We’ll put that (i.e. citation) into the reference list on our speaker notes. So thank you. And as we start today's interview, I was wondering if you'd like to share your path from clinician to researcher, because we've had several guests who have started in clinical work and then came to their doctoral work and research a little bit later. So, I'd love it if you could share that with our listeners.
Felicity Bright Sure. So I worked as a speech and language therapist in New Zealand. We are speech language therapists. I worked in a range of neurological settings, from acute stroke neurosurgery, did a little bit of ICU, did some rehab in inpatient services and in community, and really enjoyed that work, but I'd always had a long standing interest in research. I was a bit of a geek, you know, When I was in training, that was, that was me, I was the geek. And so I'd always kind of expected at some point I would go down the research track.
It was prompted after I had my first baby, and my work required me to either go back full time or to not work. And so at that point, I chose to not go back to work full time, and a research job came up at Auckland University of Technology, and I'd followed their work for a while. We don't do speech therapy here, it was rehabilitation research, and I was offered an opportunity to be a research officer doing interventions as part of a randomized control trial with people with traumatic brain injury.
And so that kind of gave me the space to bring together some clinical work, but also some research work. It gave me the opportunity to do my Masters alongside this with my fees paid. So that was fantastic. And it really solidified for me that I was quite happy and enjoyed being in that kind of clinical research space. And so I've been in the university now for 15, nearly 16 years
Ellen Bernstein-Ellis Wow, that's a great story. So now you have a 15 year old, right?
Felicity Bright I have a 16 year old who is now taller than I am.
Ellen Bernstein-Ellis Well, thank you for sharing that. I'm just really looking forward to a discussion around some, what I consider critical but hard to define and challenging to research topics. like engagement, wellbeing and hope. I want to start by asking, how did you end up researching a topic like engagement or hope? You did say during our planning meeting that you research things that you're bad at, which made me laugh. So that sounds like some courageous and reflective exploration. So maybe talk a little more about that.
Felicity Bright Yeah, I am a bit of a selfish researcher. I research the things that I find tricky and a little bit hard, because for me, I want to learn how can I do better at this? How can I help my students learn how to be better in these areas? How can I help clinicians not make the mistakes that I’ve made. I guess trying to be a better clinician has been at the heart of a lot of the work that I do. And you know, when I was working full time in clinical practice, I had patients who would stick with me where I just felt I let them down. They had such a short window of rehabilitation access. They were living with stroke for the rest of their lives. They maybe had eight or 12 weeks of speech therapy. There were just times when I really felt I missed the mark for them, when they didn't get the best rehab they could have had.
And it was when I was working in the university in this randomized control trial of goal setting interventions after traumatic brain injury that it started to help me reflect on some of the why I was maybe having some of the challenges I was having.
So in this trial, which was quite prescribed because it's a randomized control trial, I was noticing that patients seem to be engaging with these interventions a lot more than the people who I worked with in clinical practice, and that kind of surprised me a little bit. I also noticed that-- we were using Mark Ylvisaker’s approach to goal setting around what is meaningful identity based goal setting--and people were identifying hopes and goals and dreams that would have left me panicking as a speech and language therapist. What do I do about this?
But it made me realize, actually, I didn't need to panic about that, and there were ways to engage with people about their hopes and dreams that honored those hopes and dreams, that kept them alive. But also, I could see ways that I could work with this. I could bring my speech therapy hat and help people. And so it highlighted to me that maybe the things that I had perceived to be difficult or issues, didn't need to be and there were ways to think about these things differently and ways to work differently to better support people.
So working on this trial, and I did some quite structured reflection around that with some of my colleagues, writing in auto ethnography around this, gave me the opportunity to reflect on these areas, but also highlighted that there was the real opportunity to do more nuanced and more detailed research that would bring to life different ways that we could support people to hold hope, to engage in rehabilitation that is meaningful and that might be able to produce some quite tangible suggestions to support clinicians and to support the people with stroke who we work with.
Ellen Bernstein-Ellis I just want to say that these intangible, some what we call intangible topics that you've tackled, you always seem to end with tangible suggestions, and that's what I have found so inspiring. And we're going to circle back to hope in a few more questions. But, I just want to say, not only has my clinical thinking been informed and inspired by your research topics, but I've also just learned so much from the variety of qualitative methodologies that you've used in your work. I was wondering if you could share how you developed your expertise in qualitative research, maybe even offer some tips to people wanting to develop their own skill set. And okay, maybe I'm being a little selfish interviewer. You just said selfish researcher, but I found this challenging, and I've been trying to dip my toe, or I've fallen in head first, trying to develop my skill set around qualitative research. What's your advice?
Felicity Bright I was really fortunate. I came into research, into a team that had qualitative expertise and that used a variety, but not a wide variety, of different qualitative approaches. And it was a team, and still is a team, that has really high standards for methodological rigor. So to us, it's really important to do research that is robust and rigorous and that anchors back to the underpinning theory and philosophy that underlies each of the approaches that we use.
But I was also really lucky in my research that I had supervisors and bosses who really supported innovation, who didn't tell me, no, this is how we do things, who didn't expect me to come into a study and do it just as they had told me to do. But they created the space for me to explore when I was working as a clinical researcher, but also as a master's and as a PhD student. Really had no issues when I said I'm going to go to the library, and I would just sit in the library and read qualitative textbooks and come back with a completely hair brained idea, but that actually turned into something that was really interesting and meaningful. So the Voice Centered Relational Approach that I've used a number of times came from sitting in the library one afternoon and just reading Feminist Research Methodology books. And I think one of my tips would be read outside speech and language therapy. There's amazing work that is happening, not just in the health disciplines or education spaces, but I love reading health sociology journals. I get notifications of a number of different journal types that alert me to different work.
One of my recent projects I used Applied Tensions Analysis, which I'd never heard of, but I had a notification come across for a paper about domestic violence settings and kind of how services work. That's not in my area of research or clinical expertise, but there was something within that abstract that made me go, oh, there's an idea there that is similar to the ideas that I'm trying to get at in my stroke research. And so reading widely, I use Twitter a lot as a way of, kind of coming up to date with different research. I use trial and error. I've tried things and got them terribly wrong. I tried Grounded Theory for about a year for my Masters, and it was atrocious. But also I found that doing research with people with aphasia pushes you to be innovative. A lot of the methodologies as they are published don't necessarily quite fit with the types of interviews or the types of data that we have, and so for me, that's provided an opportunity to test and do things differently.
Ellen Bernstein-Ellis I mean, that's an inspiring response and encouraging support. So thank you.
During our planning discussion, you also referred me to the Life Thread model and the 2008 article by Ellis Hill, Payne and Ward. What a wonderful article. So thank you for that.
I was particularly taken with its implications for clinical practice and how it might guide us in asking questions in a better way to help us understand the social realities of our clients, to prioritize that. To understand how important the social reality is for our clients. Could you please share with our listeners some of the core concepts of the Life Thread model and how it's informed your work? Because I do see the connection there.
Felicity Bright Yeah, I came across this, Carolyn Alice Hill, who developed it, I think, as part of her PhD, was a collaborator of one of my PhD supervisors, and so Cath put me onto it. But the Life Threads model is about identity. And Carolyn's work was in stroke, and she was kind of talking to how identity changes and develops over time. And the Life Threads model talks to how our lives and our identities are made up of many threads, and those threads, they can change over time. But when there's a traumatic event like a stroke, it can cause some threads to break or be frayed, and that can be really challenging. We know there's a lot of work around aphasia and identity construction and identity loss, that's come around.
But also what we know is that stroke can also prompt people to think about what are the threads that they want to continue post stroke. Maybe there are some threads, I found in my hope research, where people are saying,”I don't want to be that person anymore. That's not something that I value”, and for them, sometimes the stroke could be an opportunity to rethink what are the threads that I now want to bring into my life as I weave this new identity of somebody post stroke, but still continues threads that have come through from before the stroke.
We know from the hope research that I was doing that it was often really hard for people to see these threads. It kind of felt like there was a pre-stroke life and a post-stroke life, and that there was quite a disruption. Those threads were cut. And so for me, it prompted questions about how do our conversations as clinicians help people identify the threads that are important for them to thread through their life. What are the new threads that they want to pick up on?
You know, some of the work I've done, and we will talk about this a bit later on, around life after stroke, has highlighted how actually a lot of the conversations that happen between clinicians focus around things like tasks and activities and doing things, but there isn't necessarily a lot of conversation about identity or about what is meaningful and what do people want to carry through, and how can clinicians support that?
And I would say that if we can kind of tune into the threads that matter to people or that people want to matter in their lives, it gives us a chance to tailor therapy to be much more personalized, more meaningful and more engaging, and I would suggest, probably leads to better outcomes for people. What we know from quite a bit of the research, not just my research, but other work, is that people are often doing this identity work on their own, without support. And we know that it's really hard, because our identities are social and they're relational, and they occur through connection and through communication, all of these things that are disrupted by aphasia, often. And so I think the Life Threads model really prompts us to think how can we as clinicians, support people to engage in conversations about identity, and how can we overtly, really attend to supporting identity within the work that we do.
Ellen Bernstein-Ellis Wow, that's beautiful. And yes, I think there's been, fortunately, a growing understanding of the importance of looking at the lack of support for this identity work with us with our clients, and I can really see how the Life Threads model has played an important role in your thinking and research. I recommend our readers to the article because it has some great examples of how to maybe flex the way you ask questions to help understand the narrative better. So I think it's, a marvelous article,
I just want to take a moment and let our listeners know about the fabulous interview that you did with Michael Biel on the ANCDS podcast where you discussed engagement and ways you might incorporate Goal Attainment Scaling to help our clients establish meaningful goals. I'll put the link to that, along with the citations to all of the work we're discussing today in our show notes.
That also gives me a chance to say I don't have to cover everything today, because he did a really good job on those topics. But at the end of that podcast with Michael, you highlighted what was coming next, and that was your work on wellbeing. You've been exploring, and this is a quote by you, “what does it look like to explicitly attend to holistic, long term wellbeing?”
Can you discuss some of the takeaways from your 2024 article, Psychosocial Well being After Stroke in Aotearoa, New Zealand, a Qualitative Meta-synthesis with your co authors, Ibell-Roberts and Wilson. Maybe we can just start by talking about the term psychosocial wellbeing. That’s an important one to understand, but it can vary depending on one's cultural context. Just to start with that, so yeah, good luck with all of that!
Felicity Bright It's a massive question, and it's funny, I started with the term psychosocial wellbeing, and I really intentionally used the language of psychosocial to kind of move away from thinking about just psychological wellbeing, which tended to be framed more from a mood perspective. And so I really wanted to be attending to some of the emotional, and the social, and the relational elements of wellbeing.
But actually, I've now dropped the psychosocial because what we found is, when we talk to our people with stroke in the community, as part of our research, that term is completely meaningless to them, but the term wellbeing is something that resonates.
Wellbeing is a really, firstly, a really nebulous term, but it's also really multifaceted. And I guess the place we've come to is, we view wellbeing as kind of quite unique to an individual, but it's deeply relational, and it's influenced through connection with people, with their cultures and with their communities, and all of those areas need attention.
Now, in this piece of work that you referred to, Qualitative Metasynthesis, we were looking across the literature in Aotearoa, New Zealand, when we look at all the work that's been done, looking at life after stroke, and living life after stroke, what do people say about wellbeing and that highlighted that there were a number of features.
Now, one thing I want to flag is that within New Zealand, we have an indigenous population, the Māori population of New Zealand, who have been here for centuries before Pakeha came and colonized New Zealand. And one of the things that's been really important in our work is to really make sure that we are upholding the voices of Māori, who are often either not included in research, or are involved in research that is not particularly culturally safe, or where their perspectives are kind of subsumed within the wider perspectives of the dominant Pakeha, or European culture.
And so one of the things we've been really lucky to do with this is to have my colleague BJ Wilson, who was leading the Māori stream, so she engaged with our Māori data and literature uniquely. So we upheld that in its own right. That's context, because I'm going to talk to two different ways of thinking about wellbeing, one that was general from all of the literature and one that was specific to Māori . So when we look across all of the New Zealand literature, including the Māori literature, we kind of saw there were probably four key areas that seemed to matter for wellbeing. Having strong connections with family, with old, pre stroke friends, but also with new friends, people who had also been through stroke and had some similar experiences. The sense of self that was connected, where people had a sense of being connected to who they were before the stroke, who they are now, and have an idea of who do I want to be in the future? And there was a sense of coherence, sense of thread that went between those identities. There was, when they experienced wellbeing, a general sense of stability in the present. So things were okay now. It didn't mean that things were perfect. Some of the literature has suggested that people have to have positive emotions if they're going to have a sense of wellbeing. But actually, this qualitative meta synthesis, and the following qualitative work we've done has suggested, no, life is never 100% positive for any of us, but it's about having a balance of, yes, maybe there are some hard times, but also there are some good times as well. That overall, there's an equilibrium of emotions,
Ellen Bernstein-Ellis Right the duality, like be able to hold the duality
Felicity Bright Absolutely and kind of be okay with it, recognize that each of them has a time and a place. People also, when there was a sense of wellbeing, had a vision for the future, kind of a sense of moving towards that. So, yes, they were okay in the present, but they also had a sense that the present is not my future for the rest of my life. I can see a life that is meaningful and enjoyable, and I'm taking steps towards it.
But when we looked at the literature from Māori, and this was the analysis led by my colleague, Bobby-Jo, it also came through ideas like whanaungatanga and ngā hono. So whanaungatanga talks to the notion of connections, and ngā hono talks to connections and kind of belonging as well. And that was a sense of connection to whānau. So that is to people's wider kinship networks, not just blood relations like a family would be, but to kinship networks who are meaningful to the person. Having a sense of connection and belonging in their community, but also to places of meaning. So not just people, but to places.
We also notice an idea around ko ahau, so being connected to their identity as Māori, to their cultural identity, in a sense that their cultural identity was recognized and was valued and supported by those around them, including healthcare professionals. Ideas of mana and wairua. So mana talks to the inherent standing and value that an individual has. And we all know that in a healthcare context, actually, that can be diminished because you become a patient in the healthcare context. But actually, for wellbeing, having that mana recognized and valued and upheld was really critical. And when one's personhood is understood and respected, that also helped with the sense of wairua, I guess, the spiritual essence of the person.
And finally, was the notion of rangatiratanga, which is about autonomy and control and the ability to make decisions for oneself. We can see that while there were similarities between our Māori and our non-Māori groups, there were also cultural differences. So for wellbeing, for Māori, had wider integrations with their sense of whānau, their family and kinship networks, and for their culture and wellbeing was unique for each whānau within the research.
Ellen Bernstein-Ellis I'd like to take a moment and have you elaborate a little bit more on that concept of the relationship of whānau to wellbeing, and how the whānau may be impacted by the stroke and subsequent aphasia. So often our family and support network does not receive direct attention. And here, you're elevating it quite a bit, so maybe you could speak to that a bit more. This is really top of mind for me, because I just went to a think tank meeting and hearing the stories of the care providers saying, I'm not sure I mattered in this equation of my spouse's health care rehabilitation.It just really struck me to hear that. So please, let's talk a little bit more about those values.
Felicity Bright Yeah, absolutely, for all of the people in our wellbeing research and in the previous hope research and so on that I've done, kind of people's whānau, their family and their social connections were absolutely critical to their recovery. And what came through, when we were looking at Māori experiences, was particularly also the intergenerational aspect, like sometimes within stroke services, we might think about the partner a little bit, not always particularly well. And I'll talk to that in a minute.
But actually, we could also hear within our Māori whānau, kind of the impacts for generations above and generations below, like the disruption to relationships between grandparents and grandchildren, and how the grandparent who may have aphasia, would usually have a really critical role in passing on family knowledge, or passing on Matauranga, kind of Māori cultural knowledge. But actually, because of the way the stroke affected them, they couldn't do that and take that role on, and so that impacted not just on the relationship, but also kind of on the identity and how Māori culture could be passed on through a whānau unit. But we've also heard exactly what you talk about. Our services are focused around the person with stroke rather than their whānau, but our services are also really short term. And so what we can see from the research is that the family and the whānau become the connectors and the supporters. They are the consistent people. They hold, usually, deep knowledge of the person that often the healthcare professional doesn't hold.
And we're doing some work at the moment around communication access in stroke units. And even in the context of really significant aphasia, we're hearing about how whānau, even though they don't know about aphasia, they don't know about communication strategies. But because they know how to read the person, they know their non verbal communication, they are actually really powerful translators, and hold the expertise that, actually, we don't hold as Speech and Language Therapists. But we also know that the whānau are key in helping people access supports outside the healthcare system, and they do a lot of that navigation work that they are left to do because the healthcare system doesn't do it very well. And like you say, that's really challenging when the whānau's well-being is impacted themselves, you know, but that isn't seen consistently, and it isn't acknowledged. They very quickly become the carer, rather than, this is this person's wife and they've been married for 45 years. Or this is this person's husband, and they've got three young children at home. What is this going to mean for their relationship as a couple, for their relationship as parents? And so the families are talking to us about the exhaustion and the grief and the shock and the loss. The relief that the person is alive, but again, the duality, there is relief, but there is also distress from the way that the stroke is impacting. And so we would really be calling for much more focus on everybody's wellbeing in this context, because if the wellbeing of whānau is not there, that impacts also on the wellbeing of the person. And I think we need to be shifting how we think about who is our client, whose needs do we serve, and what is our role in supporting the social and relational context around the person
Ellen Bernstein-Ellis That's beautiful. You really highlighted that role, the role of the whānau. And you also identify, Felicity, some other key contributors to wellbeing, and then how those might really impact our clinical goal setting, and I know that's always such an important aspect of how we think as clinicians. You have to document because we're in a system, which we'll talk about. Maybe you can share some other factors that you identified.
Felicity Bright Yeah, so I would be encouraging people to think about what are all the things that seem to support people's long term wellbeing? And those are things, like the relationships they hold within their family, but also within their social networks and within their work networks and so on, Thinking about the different emotions that people might be experiencing. Thinking about hope and what supports people to hold hope, and what do people hope for. Think about the connections that matter to people, the connections to people. The cultural things that matter for people's wellbeing. The connections to community activities and roles and so on.
And think about the things that matter and are meaningful for individuals that usually fall outside our traditional SMART goals that we use in New Zealand, you know? Is it smart, specific, measurable, achievable, realistic, time bound? What is it? I would be saying our goal should be focusing on what makes a good life for this person.
And I would be encouraging you, if you're a clinician, looking at the goals that you're setting for the person. Where is the good life in those goals? Is that up front and center and documented on the page that everyone can see it? That's something I learned through my goal setting research. That was my first research job, the importance of taking people's words, putting their words on a page, and keeping the words where everybody could see it. So where are the things that support wellbeing and that constitute a good life in our goal setting? Where are they in the interventions that we're doing?
And I would be really encouraging people to reflect on how they are making the links explicit between the therapeutic tasks and the things that really matter to people. Because we know from the engagement work that when people can see the link between what they're doing in therapy and what matters to them in life, it is much more likely to be engaging and is much more likely to support them to persist, even when it's difficult, because they can understand this is why I'm doing this thing.
Ellen Bernstein-Ellis Right? Oh, that's beautiful. That really leads nicely into another 2024 article that you've put out focused on wellbeing. And that's The physical wellbeing is our top priority: Healthcare professionals’ challenges in supporting psychosocial wellbeing and stroke services. That article examines what seems to be a mismatch between knowing as clinicians that wellbeing is important, right, and being able to specifically address it within our clinical context. So, we say that we want to, and we know it's important, but the ability to get there, it's quite challenging. I was wondering if you could highlight some of your findings and key recommendations. And I think one of those actually addresses the graduate curriculum. I think that is really going back to the beginning, right? So, please share some of the wonderful work from that article.
Felicity Bright So the context for this work is, this is part of a bigger program of research I'm doing around wellbeing after stroke. And this isn't specific to people with aphasia, but we do have people with aphasia in the research. This research came from this issue-- we've got decades of literature that says that wellbeing is important. We've got a body of literature that says clinicians know wellbeing is important, but we are persistently not addressing wellbeing, and we've got decades of patient experience data that says this is an unmet need.
So I was really interested in understanding, why have we got this persistent mismatch between what is known what matters and what is done, and so using an approach called institutional ethnography to try and get into the cultures and the structures that contribute to this, the rationale behind that is I didn't want to be creating solutions that were going to be completely unattainable in the healthcare context. And so I wanted to understand what's going on in the structure of the healthcare system, and how might we be able to work with that or push against that, to create different ways of thinking about how we work to deal with this persistent issue.
So this project, this part of the research, we were looking at, why are clinicians not seeming to address wellbeing? And so we interviewed over 30 clinicians, I think, within this research for a whole range of healthcare disciplines. What came through really consistently was everybody wanted to support wellbeing. Everybody thought it was important, but there were a number of factors that made it difficult, and we traced as to why that was so.
Firstly, we can look back to when the person first comes into the service. They come into the emergency department. There's often a code stroke that's called. It's a time of really busy early biomedical focus around investigating the stroke, doing assessments. The first couple of days are about intervening to prevent another stroke or to prevent complications. And dysphagia assessment is a classic in New Zealand. Dysphagia assessment is usually prioritized over communication assessment because it is seen to have particular risks and contribute to particular complications.
And so we've got this really early biomedical focus as people come through the first few days. Then the focus shifts a little bit to assessments and treating impairment in function. And when we were interviewing clinicians, they were talking about wanting to give people the best chance of recovery, and that linked to ideas around neuroplasticity and the importance of early intervention for maximizing neuroplasticity and brain remodeling. There was a real focus on addressing the practicalities like toileting and dressing and what was needed to get people home.
And there was a view often that emotions could wait. We need to do the practicalities first. We can do the other stuff later. This was a time of focusing on helping people survive, get through and get home, and it was in the context of really busy wards. You know, sitting and watching nurses work, they are flat out. They are understaffed, and they have very limited time to be doing these aspects of work. But all of this contributes in this wider healthcare system that in New Zealand, and I suspect internationally, is short staffed, underfunded. We've got more demand than we've got beds. There is a really strong focus on getting people home.
Now that's not inherently bad. A lot of our people that we speak to want to be home. Home is a more healing environment for many people than being in hospital. But when the focus is on getting people home, and that is usually about, is the person physically safe to be home, what can happen is other forms of work and other impacts of stroke can be devalued or be forgotten.
And what we could see is people were doing work to support wellbeing within this, but it was kind of a particular form of wellbeing work. They would acknowledge a person's emotions, if they came up through interactions. They would be responding to the emotional cues that people gave off that they were maybe feeling a bit uncertain or a bit upset. They talked about the importance of listening to the person, but that was often couched in a ‘I can listen for so long, but then I need to get on with my session’, because the assessment, the treatment, the moving people forward wasn't important, and they would look to others to help.
But the problem is, I would say this, this did a really good job of dealing with the tip of the iceberg, the emotions that were on the surface. But if we think back to what I've just said about what matters for wellbeing, relationships, connection, sense of self, hope, those things are not addressed. What we saw was that wellbeing was other to the core work of any individual discipline. That didn't work for anybody. Didn't work for our patients that we spoke to. It didn't work for our clinicians as well, because we could also see the moral injury and the burnout that comes when you can't offer the services that you know people are wanting and needing.
And when we think about what do we do about that? Well, yeah, it's tricky, and I don't have any great answers, but training and education is one thing. So when we think about wellbeing as seen as other to the core business of the disciplines, we need to look at, what is it that we're teaching our students? What are we saying is core work of speech therapy or of physiotherapy or of nursing.
I've got the privilege of chairing the accreditation body for speech therapy in New Zealand, and we are rewriting our accreditation framework at the moment that essentially dictates what programs need to teach. We now have a requirement that programs are teaching about psychosocial wellbeing, and that programs are assessing students on how they're addressing psychosocial wellbeing. We need to look at how pathways for care develop, and where is wellbeing within policies, processes, structures, documentation,
Basically, it's nowhere. But we also need to look structurally, and we can talk a little bit more about structures and organizations and cultures, because I think what this work reflects is a wider issue around the cultures and the organization of care that can make it really challenging for clinicians to work in the ways that they do.
Ellen Bernstein-Ellis Oh my gosh, it's a beautiful, beautiful response. I think my favorite quote, and there were many in that article, but the one that said “people with stroke live with the impacts of a stroke system that is designed around biomedical short term care for a lifelong condition and deserve services that support them to thrive, not just survive.”
I think it's what we need to bring back into the curriculum for our students to understand. And all of this ties into the importance of understanding how cultures and organizations, like you just said, of care, might impact the therapy we provide to our clients. Why do cultures and organizations of care matter? You're alluding to that. I think we've just started to reflect on that.
Felicity Bright Yeah, I've often felt there's a real risk with the research that I do that we could end up pointing the finger at clinicians of not doing things as well as they could or as well as they should. But actually, we need to understand why is this? Why does it make sense for clinicians to prioritize dysphagia over communication? Why does it make sense to prioritize getting people home, over spending the time on addressing their wider wellbeing?
And I've been really lucky to work with Deb Hersh and Stacey Attrill, we did a piece of work that looked at this in the context of how speech therapists enacted therapeutic relationships. And we started by delving into why do people work in the way that they do? We started to see the cultural elements. So the needs, for instance, your allegiances to colleagues, to be a good team player, to maintain your legitimacy. And particularly for speech therapists, who often have a slightly tenuous role in stroke teams. Physios and OTs are important, but speech therapists often have to kind of fight to kind of have their voices heard, and so that can lead to speechies behaving in particular ways.
We can also see how cultures of safety impact on what people prioritize. So Abby Foster has done some beautiful work around the cultures of aphasia care and acute care, and highlighting that actually the priority for physical safety and managing dysphagia risk is privileged over the culture of or a need to think about what is the risk associated with communication and poor communication and people not having communication access.
If we understand why people work as they do, and if we understand how the cultures and the structures work, then we can start to unpack them and think about what are the ways that we might be able to do things differently. You know, these cultural factors are very real, and none of them are inherently wrong, like it's not a bad thing that we're trying to prevent people getting aspiration pneumonia. That's really, really important, but we need to understand how these things shape practice and the unintended consequences that they might have for what is not valued and for what work isn't prioritized, and what outcomes don't actually seem to really matter in these contexts.
And when we start to make these visible, then that opens up space to think about, how might we be able to do things differently, where we can maybe hold all of these things. And you know, in my work that I'm doing around wellbeing, that's the next phase of our work, is working with clinicians to think about, how might we be able to do things differently, so that it's not one or the other, it's not a dichotomy. But how do we create space for all of these things to be viewed as important and to be prioritized?
Ellen Bernstein-Ellis You've started to dig into that already, because you have yet another 2024 article that you co-authored with Kayes, Soundy and Drown, Limited conversations about constrained futures: exploring clinician conversations about life after stroke in inpatient settings. And that examines how clinicians talk about the future with their clients. It analyzes 300 hours of observation of clinical interactions, along with 76 interviews with people with aphasia and 37 clinicians. I just want to say that's an astounding undertaking. So, as I read it, it felt like almost an extension of your 2013 and 2020 articles looking at hope, because you connected how what we say can impact how our clients see their future possibilities. Can you share some of the themes you constructed from all of that amazing data collection? I mean, I'm sorry, I thought 15 interviews were a lot, so then I saw this, and I'm like, oh my goodness, amazing.
Felicity Bright It was a pretty massive piece of work, but it was a real privilege to be able to sit and just observe interactions. And I'm so grateful to our people with stroke, many of whom were like two or three days post stroke, and they had the stranger come along and sit there and observe them for 12 hours, but also to our clinicians, who were quite vulnerable in that process of having somebody observe and analyze what they were doing. But at the same time, I think that work is really valuable for looking at what is going on.
What we could see is that the conversations that were being had tended to focus on quite a short term future, and we termed this theme constrained temporal horizons. When clinicians were talking about the future, the vast majority of those conversations were about the immediate future. For doctors and nurses--for nurses, it was often what needs to happen in this shift. For allied health and for doctors, it was what needs to happen before you discharge from our service into the next service. And for some allied health, it might be the first few days at home, but there was a view that talking about the longer term future beyond that should be done by other clinicians who might have more knowledge of what life could look like at that stage.
We also found that the talk about quite a constrained future was in the context of actually very limited talk, in the first place. So when we think about communication access, for instance, we think, oh, people with aphasia aren't getting very good communication. Actually, lots of people with stroke are not getting very good communication. Again, thinking about cultural factors, but actually communication is not happening well in stroke units, or, I think within the wider healthcare system.
You know, we've got a very task focused, medically focused situation. And so the conversations that were happening were on topics that were led by healthcare professionals, on the topics that they felt mattered-- the tasks they needed to do, the body structures and impairments. The goals that were set were about what needs to happen before somebody gets home. There was little talk about emotions. There was little talk about how you're feeling about what's going on, or what it might be like for you or for your family when you go home. And so this talk about the emotions and so on and future possibilities was left to patients and to families to raise.
And instead, the conversations tended to focus on what the healthcare professionals saw as essential topics for the episode of care. We certainly did see some conversations about the future. So I don't want to be disparaging, and I also want to acknowledge the very partial nature of research. I did not see every single interaction. I know that a lot of these quite personal conversations often happen in things like the shower, when the nurses or the OTS are helping the person shower. That's one of the few private spaces on the ward. And so I want to acknowledge that my analysis is based on a limited data set, and it isn't based on all the conversations that happened, but certainly there was a trend towards limited conversations.
We did see that clinicians would open some doors about the future. So they would talk about possible prognosis in the context of things like upper limb prognostic testing that is offered in some hospitals in New Zealand. We would see clinicians talk about what was meaningful to people, particularly in a context where the patient was struggling to engage, but often when the clinicians were talking about this wider future in this context, it was done to try and plant seeds about what the healthcare professional thought was realistic, and it was done to try and help the person engage in rehabilitation in the context of maybe struggling to engage at the best of times.
So I think what we could see was that conversations were limited. They were limited conversations about short term, constrained futures that didn't necessarily set people up with hope for the future, with a sense of possibility, with a sense of even starting that process about what matters, to thinking about what matters to me, what do I want life to look like?
Ellen Bernstein-Ellis Wow, and that really just circles us back to that concept of hope. Your work in hope has just been so meaningful to me. I've been really honored to be the guest lecturer speaking about aphasia to our counseling course that's taught by Dr Shubha Kashinath at Cal State, East Bay. And I've included, from the beginning, your work on hope. I just feel it's critical to give our students ways to understand and think about this construct and the role they can have in offering some hope building clinical interactions.
I'd like to close this interview by having you discuss some of your first work that I had the honor to read, and some of the hope affirming strategies that you suggest in your 2020 article. Because I just think that's really a gift.
Felicity Bright One of the things that really fascinated me in this work was how our people with aphasia in the research talked about how they look at their clinician and they are reading them to see, are you somebody who's going to give me hope or not? And if they didn't feel their clinician was going to support their hope or was going to help give them hope, or was going to disparage their hopes, they would shut down and they wouldn't share. And so I think, one of the things is to be reflecting on yourself. What are the messages that you are giving about how you are a safe person to talk to, about whether you are somebody that they can engage in these risky conversations about?
I think there's a couple of things as well. We need to recognize that just because somebody says they hope for something doesn't mean that they expect it to happen. We all have unrealistic hopes and expectations. You know, psychologist colleagues talk to me about how actually having unrealistic hope is part of being psychologically adjusted, and why should that be different for people with stroke? Who are we to say that we hold the expertise.
Now, that's not to say that there aren't challenges. So sometimes you might need to do a bit of a balance of, oh, is this something I need to engage in a conversation about? You know, an example is, if somebody is going to invest quite a bit of money in something that actually, there's no evidence to support and could potentially be problematic. There's a really good guideline I found from Christy Simpson, who's an ethicist, who talked about what are the positive effects that this hope has for people? What would be the impacts of taking it away, both positive, but also, what are the negative things that it would do? And so actually engaging in a bit of a risk analysis to think critically about what is holding this hope doing for somebody.
Linked to that in the latest paper we did around recalibrating hope, it really highlighted to me the importance of trusting people to often recalibrate their own hopes. So I went back to my original participants from my 2013 research a couple of years later, and I looked at their experiences of hope over that time. And what we found was most of them recalibrated their hopes. They hoped for different things over that time, and they had done that as they engaged in different activities, as they tried things, as they considered their progress, as they rethought what mattered to them. And so that really highlighted, to me, the need to trust people, but it also highlighted the need to think about, how do we support a context that supports people to do that recalibration.
Those who were more likely to recalibrate and hold both hope and realism together were people who had social networks, who were engaging in meaningful activities, and who had a sense of purpose and possibility. One of my participants didn't have that. They had lost their social connections. They had no activities in which they were engaging in what was meaningful, and their hope had shrunk.
And so it talks to me again, those earlier conversations we've had about well being, thinking about what's meaningful, what supports wellbeing, that's exactly the same thing that supports hope. How are we supporting people's social wellbeing? How are we supporting their relational wellbeing? How are we helping them connect to what is meaningful and what is possible, not just to their impairments, and maybe what is not working so well.
I think it's really important to be explicitly thinking about, what is it that helps people bring joy, have joy? What brings them peace in the present? And how can we help them have that sense that things are okay, even if they're not perfect, but also help them have that sense of looking to a future that's possible.
Ellen Bernstein-Ellis Okay, we only have a minute or two left, but I'm going to throw this last question out to you. Felicity, if you had to pick only one thing that we need to achieve urgently as a community of providers, of professionals, what would that one thing be? This is almost like your elevator pitch. You got 60 seconds here. So, so
Felicity Bright So my one thing, in a long, complex sentence, is that speech and language therapists need to reprioritize communication and supporting people to live well after stroke and aphasia, and they need to consider how we model to our colleagues and to our patients and families, and how we support cultures of care that value relationships and relational work, that value and support communication, and that value and support wellbeing.
Ellen Bernstein-Ellis Oh my goodness, well said, Felicity. Thank you so much for the honor of having this interview today. I know it's going to be impactful to our listeners, and I want to thank our listeners as well. For references and resources mentioned in today's show, please see our show notes. They're available on our [email protected] and there you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy, and if you have an idea for a future podcast episode, email us at info@aphasia access.org. For Aphasia Access Conversations, I'm Ellen Bernstein-Ellis, and thanks again for your ongoing support of Aphasia Access. Thank you, Felicity.
Felicity Bright My pleasure. Thank you for having me.
References and Resources
AUT Centre for Person Centred Research: https://cpcr.aut.ac.nz/our-research
Biel, M. (Host). (2016). An interview with Felicity Bright: The patient’s engagement and experience with you, the speech pathologist (No. 2) [audio podcast episode). ANCDS. SoundCloud.https://soundcloud.com/ancds/ep-2-an-interview-with-felicity-bright-the-patients-engagement-and-experience?utm_source=www.ancds.org&utm_campaign=wtshare&utm_medium=widget&utm_content=https%253A%252F%252Fsoundcloud.com%252Fancds%252Fep-2-an-interview-with-felicity-bright-the-patients-engagement-and-experience
Bright, F. A., Ibell‐Roberts, C., Featherstone, K., Signal, N., Wilson, B. J., Collier, A., & Fu, V. (2024). ‘Physical well‐being is our top priority’: Healthcare professionals' challenges in supporting psychosocial well‐being in stroke services. Health Expectations, 27(2), e14016.
Bright, F. A., Ibell-Roberts, C., & Wilson, B. J. (2024). Psychosocial well-being after stroke in Aotearoa New Zealand: a qualitative metasynthesis. Disability and Rehabilitation, 46(10), 2000-2013.
Bright, F. A., Kayes, N. M., McCann, C. M., & McPherson, K. M. (2013). Hope in people with aphasia. Aphasiology, 27(1), 41-58.
Bright, F. A., McCann, C. M., & Kayes, N. M. (2020). Recalibrating hope: A longitudinal study of the experiences of people with aphasia after stroke. Scandinavian Journal of Caring Sciences, 34(2), 428-435.
Bright, F. A., Kayes, N. M., Soundy, A., & Drown, J. (2024). Limited conversations about constrained futures: exploring clinicians’ conversations about life after stroke in inpatient settings. Brain Impairment, 25(1).
Ellis-Hill, C., Payne, S., & Ward, C. (2008). Using stroke to explore the life thread model: an alternative approach to understanding rehabilitation following an acquired disability. Disability and rehabilitation, 30(2), 150-159.
Foster, A., O’Halloran, R., Rose, M., & Worrall, L. (2016). “Communication is taking a back seat”: speech pathologists’ perceptions of aphasia management in acute hospital settings. Aphasiology, 30(5), 585-608.
Parr, S., Byng, S., & Gilpin, S. (1997). Talking about aphasia: Living with loss of language after stroke. McGraw-Hill Education (UK).
Simpson, C. (2004). When hope makes us vulnerable: A discussion of patient-healthcare provider interactions in the context of hope. Bioethics, 18(5), 428-447
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Interviewer info
Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.
In this episode, Lyssa Rome interviews Dr. Liss Brunner about how clinicians can incorporate social media into their work with people with acquired brain injuries.
Guest info
Dr Melissa ‘Liss’ Brunner is an early career researcher, lecturer at the University of Sydney, and a certified practicing speech pathologist with over twenty years of experience in supporting adults with swallowing and communication difficulties. Liss has clinical and research expertise in acquired neurologic disorders, particularly working with people who have experienced a stroke or traumatic brain injury (TBI). Diverse research experiences have enabled Liss to build specialist skills in qualitatively driven social media and digital health mixed methods research. Liss’s doctoral research laid the necessary groundwork in understanding the complexity of the issues surrounding people with TBI using social media and how it may (or may not) be addressed during their rehabilitation.
Listener Take-aways
In today’s episode you will:
Understand how people with acquired brain injury use social media. Learn about barriers and facilitators for safe social media use after brain injury. Describe how speech-language pathologists can target social media use in rehab for people with acquired brain injury.Edited Transcript
Lyssa Rome
Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature Dr. Melissa or Liss Brunner. Liss is an early-career researcher, lecturer at the University of Sydney, and a certified practicing speech pathologist with over 20 years of experience in supporting adults with swallowing and communication difficulties. Liss has clinical and research expertise in acquired neurologic disorders, particularly working with people who have experienced a stroke or traumatic brain injury. She focuses on qualitatively driven social media and digital health mixed-methods research. Her doctoral research laid the necessary groundwork in understanding the complexity of the issues surrounding people with TBI using social media, and how it may or may not be addressed during their rehabilitation. Dr. Liss Brunner, welcome to the Aphasia Access podcast, I'm so glad to be talking with you.
Dr. Liss Brunner
Thanks so much for having me. I'm really, really excited to be here and talk about one of my favorite things.
Lyssa Rome
Great. So I want to just start by asking you what made you want to study social media use among people with acquired brain injuries? And why is it important to study that?
Dr. Liss Brunner
I suppose I want to start by asking you a question, Lyssa, if that's alright. Okay. So, I mean, do you use social media?
Lyssa Rome
I do use social media.
Dr. Liss Brunner
And what are your favorite types of social media? And why do you use them? Hope you don't mind me asking.
Lyssa Rome
That's fine. So I primarily use two social media platforms. I use Facebook for professional reasons. There's a lot of networking amongst speech pathologists on Facebook. I also use it because I get some exercise classes there, so that's kind of nice. And then I also use Instagram, which I primarily go to to find out about knitting and sewing patterns, and to look for gardening ideas. So it's sort of more hobby-based for me.
Dr. Liss Brunner
Perfect. I love that. I mean, I use Facebook also, but it's mainly to stay in touch with like high school or uni friends and my family. And I also use Instagram, and like you lots of hobby-based stuff. I love watching videos around food. Always makes me hungry, but I still love it. But I also love seeing what people are reading. So I will also quite often post what I've just read and get ideas for books that I could be reading and things like that. And I use it a little bit professionally as well to share what I've been doing and what I've been working on. And I use Twitter or X, as it's now known, probably more so professionally. So I do a lot of sharing about the work that I'm doing in there. But I use a whole heap of other platforms, as well, and kind of all for different reasons.
If you think about it, over 60% of the world's population, actually, are active social media users. And we've just talked about how we use more than one platform. The average is actually seven different social media platforms for people who are active users. And so I got interested in supporting others in using social media, because I realized how integral it was starting to become, in my own life, and for the people around me.
After a brain injury, we know it happens like that in a split second. And it can happen to anyone at any age. And so after those brain injuries occur, people lose lots of their friends. And, you know, their relationships just aren't what they used to be. They're quite often strained. They're not as fun as they used to be. And it can be really hard and devastating, not just for that person, but everyone around them, as well. And so family and close friends can find it really challenging to stay connected in a really meaningful way. And you don't really realize how important that is until it changes. And so, in rehab, I really like to support people to build up their social communication skills, with different people, different places. And I really believe that these days, one of those places we need to consider is social media. It's great to stay connected, you can make new friends, you can practice your communication skills in different ways, you can just kind of be included. So you know, you can tell everyone what's going on in your life after injury, or you can ignore that and just talk about other things like gardening and food and stuff. You can use social media to be what you want it to be. So that's kind of why I got into it. And why I think it's important.
Lyssa Rome
It sounds like you've just described both how people use it before their injury, but then also some changes in use after their injury, for example, and think of in the States—I don't know if this is also true in Australia—there's Caring Bridge and Go Fund Me and other sorts of websites where people are sharing information about their rehab process and about what's going on with someone who's had a brain injury or another kind of illness. Tell us a little bit about how people with acquired brain injuries are using social media.
Dr. Liss Brunner
Yeah, absolutely. I think this is one of the most interesting things to me is that I've interviewed lots of people after a brain injury about how they use social media. And just like many of us, they use a variety of platforms, they have individual preferences, they use them for different purposes. Some prefer Instagram, others prefer Facebook, others prefer online gaming with their friends. Many of them use social media for making and maintaining relationships. So that connection, others use it for altruism, so supporting others in need and sharing their experiences and strategies after a brain injury. But others also use it for advocacy, and activism. So sharing their experiences after brain injury to raise awareness, and reduce stigma that can be associated with it. Others are really active in contacting politicians and advocating for better support services and infrastructure. So they use it for a multitude of reasons. And it's quite often deeply personal, the way in which they do so.
Unfortunately, I did also find out that quite often, people kind of relearning to use social media, sort of through trial and error. So they don't necessarily get lots of support to do it. they've encountered lots of challenges in using it well, so they can have some difficulties with cognitive fatigue, or even just navigating the different social media platforms because they're quite often apt to change, so to speak.
Lyssa Rome
RIght. Yeah. It sounds like they're both some real benefits to people with acquired brain injuries, but then also some risks involved. So maybe you could tell us a little bit more about some of those risks and some of the benefits for people with acquired brain injury using social media?
Dr. Liss Brunner
Yeah, absolutely. I mean, I'll start with the good stuff. So there's lots of advantages to using social media. I mean, obviously, we can use it to create connections, we can totally use it for the entertainment factor—I do all the time. But it's also a huge source of information and news can be an absolutely wonderful platform for sharing information and advocating for awareness. As I've said, I think it's a really great way to share your thoughts and connect with others if you're feeling particularly isolated. And I know that for people after brain injury, who have difficulty with their social communication, there's lots of advantages in particular.
So some people may talk a lot more after their brain injury and some people may feel that they talk a bit too much. And so, you know, platforms like Twitter, or X, that have a shorter amount of space for you to make a post, that might mean that they have an opportunity to really work on limiting how much they say. And likewise, for those who have the opposite issue, and they kind of are more likely to struggle to find things to say, the same platform could be seen as a bit of a relief, because there's less pressure to write really long posts. So, you know, I think there are functions of the different social media platforms that can be really advantageous for people who have difficulties communicating.
For people who have difficulties concentrating in fast-paced conversations in person, the asynchronous approach of social media can be again, provide less pressure, they don't have to think and respond in the moment, they can actually take their time to do that. So that can provide a bit of relief as well. And I find in general, people are way more tolerant around incorrect spelling and grammar and things like that in social media. And you can type words, you can add pictures. I love using GIFs and memes and emoticons. So, you know, all of these things can be used to make communication easier in these platforms. So lots of advantages, I think that we could kind of really draw on to support people.
But obviously, there's also that downside, that darker side of social media, there's lots of risks. And it can be a really tricky space to navigate with and without a brain injury. And there's lots of concern, particularly from clinicians and family and friends around the real and sometimes perceived risks of using social media after a brain injury. So I've spoken to lots of clinicians and family members over the years. And they often tell me about how they're really worried about people being fairly vulnerable online, that they're at risk of being exploited, that they may ruin their own reputation by some of the things that they're saying online.
And quite often, as clinicians, I suppose we can act as gatekeepers in a way. And so there's often this really big focus on our duty of care in the clinical context, because we want to prevent harm, we want people to do well and not actually be hurt more. And so we can be really risk averse, I suppose. There can be this real sense of responsibility for minimizing all of the risks. And so there's lots of issues around people getting fixated on social media, and that might lead to cognitive fatigue. It could be that they're having negative mental health or emotional effects of what they're seeing in social media. They could start withdrawing from in-person interactions because they're spending a lot of time online.
I mentioned reputation management. So potentially people would say something online that will influence how other people perceive them. So whilst people are in post traumatic amnesia after a traumatic brain injury, they may regret posting something. Others have reported that their family members tell them that they're saying inappropriate things online and that's negatively affected their relationships. And sometimes it's affected their employment opportunities down the track as well. Others have had difficulties managing their finances and security due to difficulties with disinhibition and impulsivity. And so there's lots of concerns in particular around things like cyber scams and, and things like that.
Lyssa Rome
It sounds like the risks that a lot of us are faced with when we're using social media platforms. But even more so right, because of some of the issues specific to people with brain injuries that you've just described?
Dr. Liss Brunner
Absolutely.
Lyssa Rome
I'm wondering what kind of barriers and facilitators there are to successful social media use? You mentioned clinicians, reluctance, or sort of concern about the risks? What are some of the other things that we should be thinking about?
Dr. Liss Brunner
Yeah, absolutely. I mean, there's lots of barriers. But there's also lots of facilitators as well, which is good. I've spoken about some of the risks, but some of the other barriers are sometimes quite immediate. So some people might have physical barriers to using social media. So their vision might have changed, their hand mobility, and fine motor control might have changed, or they might not be able to independently go and get their device. And so they might need someone to go and get it for them. Others may not have devices, or reliable internet access, particularly if they're in a hospital, sometimes internet access is restricted. So there's those actual accessibility issues.
In terms of the changes in cognitive communication, I think, a lot of what we can see in in person interactions—so when people are having a face to face conversation—those sorts of changes we see after a brain injury can often be influencing their online interactions just as much. So for example, after a traumatic brain injury, inattention, and being easily distracted, can be quite an issue for many. And so you might see this where someone will start responding to a post, but they'll get distracted, and they'll send, you know, a message that they either didn't mean to send or it wasn't complete, or it gets misinterpreted. And it can just unravel quite quickly.
Sometimes, you know, emotional control changes quite often after an acquired brain injury. So managing your feelings can be really challenging. So some people can get really overloaded by the amount of information in their social media feeds and timelines. Or they might get really overwhelmed when they're seeing negative or sad posts. Like, obviously, we're seeing lots of sad things and disturbing things in the news, in particular, online at the moment, there's lots of conflict around the world. So being able to manage your feelings can be really challenging if you're not conscious about the influence social media posts can have on you.
Sometimes, you know, there's issues in impulse control. And so some people will get sent friend requests and they will click accept without thinking, Oh, actually, do I know this person? Or do I want to have this person as a friend or, you know, posting before you think about what you're saying and how someone's going to take that and what the potential repercussions might be? It could be that, you know, people have difficulty finding the right words and that they may put words in that they're not wanting To say, and again, that can get misinterpreted.
The other thing is that there's lots of information. And so it's quite hard to find and constantly changing. And I feel like that can increase the demands on people's memory, and how they sort through and organize information. So that can be overwhelming and challenging as well.
On the flip side, there's lots of facilitators that we can harness for good to combat some of these things. And during my PhD, I identified five factors that influence social media use after a brain injury. And sometimes these things are barriers, and sometimes they're facilitators. So I think it's really quite helpful to think about things in this way.
And so the first factor is purpose. So it's really important to think about, if someone is motivated to use social media, what's motivating for them? It could be that they are wanting to practice their communication. It could be that they are wanting to connect. They might want to find a romantic partner. They might want to figure out who they are now, after their brain injury. It could be just to fill in time, right? So purpose really influences how someone uses social media.
The second factor, I think, relates to knowledge and experience. And so it's not just that person with a brain injury, but also the people around them. So some of the barriers can be that people aren't really clear on how to support people to use social media. And that could be because of their own experience and ability, and confidence. So all of those things can really influence how you use social media.
The big one, that third factor is caution, I think, you know, it's really critical to be aware of the risks, which I've spoken about, and how to navigate them.
The fourth factor is networks. And so it's really kind of thinking about who is your online network of people? So who do you want to contact? Who do you maybe not want to stay in contact with? And increasing opportunities to have really successful interactions with those people.
And the fifth concept is really around support. So trying to find structures that influence success in social media interactions. So giving people practical supports and resources, whether that's an actual person, or whether it's a training program, or practice, with someone setting them up with a PR so they can have someone to practice with regularly.
I think they're the five different factors that really influence how someone who's going to use social media, and whether they use it well, safely. And meaningfully, I suppose, because that's what you want it to be. The other thing that I think is really important, from a clinician perspective, in terms of facilitating use is to kind of be proactive. So rather than being reactive, and just only stepping in when problems happen is actually being a person that can support people with brain injury to use social media and asking those questions. So I feel like some of the research that I've been doing is really kind of been critical to try and find guidance for clinicians on how to do that, and how to have those conversations.
So I spoke about those five different factors. I reckon if, for example, you were wanting to think about someone's purpose in social media, really, you just need to identify what platforms they want to use? Why do they want to use them? What's going to be really meaningful for them? So writing that down and thinking: Okay, who are you connecting with in that? Why do you want to use it? How can we make that better for you? So it's a really nice way to just start those conversations.
Lyssa Rome
When I think about clinically sort of getting to know someone, part of it is who are you communicating with? Like, who are you having conversations with? And if we think a little bit more broadly, you know, it's not just conversations in person or over the phone. And so to take an inventory that really reflects the person's actual communication across all different kinds of settings, is really important. I'm curious how people with acquired brain injuries are using these different social media platforms, you sort of mentioned some of them along the way, as you've been discussing the risks and the benefits, etc. But I just wonder if you could say a little bit more about that.
Dr. Liss Brunner
Yeah, I mean, we've been doing a few different little studies looking at how brain injury is spoken about, and who's using it in different platforms. So we've done a study, study looking at Twitter, it was Twitter, then it's now called X, I suppose. But back then it was Twitter. And we kind of really just explored what was being said about brain injury. And actually, I found there were actually lots of people with brain injury using the platform to connect with others to share issues around their health, life after their injury, raising awareness, and also as a source of inspiration and hope. So both giving and receiving those messages. So that was really nice.
And then we've recently actually just completed some studies where we looked similarly, at YouTube and Instagram. And in both platforms, it was really clear that this is a space where people are sharing their stories of change. And because of the inherent functions of the platforms, they can share content that they make, or reshare, and a lot of it is quite visual. It really gives that person who's sharing the content, a lot more control over how they tell their stories. And I love seeing and hearing how people use social media to tell their stories. We're all so different. And even though there are similarities amongst the stories that people are telling about their brain injury, there's so much personalization and individuality. It's fantastic to see.
In some of the interviews that I've done, you know, one person told me about how they use Instagram to share their photos of the world so that they were a photographer before their injury. And since their injury, they see the world differently. And they're taking very different photos.
So I think everyone's using different platforms the way in which they want to, yeah, it's super interesting. Others have made using social media their vocation, so as a way of connecting with others who've had a brain injury and sharing, you know, tips and ideas to support recovery. And so that's kind of their job, and it's giving them that sense of purpose. Not just in using social media, but purpose in life and giving back and being able to feel like they have a sense of belonging and contribution. So, yeah, I find it super interesting. I love it.
Lyssa Rome
Well, and one of the reasons that I was really drawn to your work and wanted to talk with you on this podcast is that it seems like at its heart, what you've been studying and working on is promoting and enabling life participation for people with acquired brain injuries for whom social media is an important life activity—either was already before the injury or is now after the injury. And, to me, it's just, it's so meaningful for people and to sort of turn our attention toward social media in this way, I think is great. So it makes me wonder, to what extent are rehab professionals, speech language pathologists and others, addressing social media use with their clients or their patients?
Dr. Liss Brunner
This is a really hard answer to give. Because I'm speaking generally. And I know that, you know, we are very individual as clinicians as well. But when I used to talk about this, you know, I started more than a decade ago in this space, I would ask clinicians when I was talking at presentations, who's worked with clients on using social media, and I would maybe have one person put their hand up. Now, when I ask that question, the response is actually very different, and I would say, you know, the majority of people would indicate that they've worked on using social media in some way, shape, or form.
But I feel like we don't necessarily have lots of guidance on how to do that well. And so lots of clinicians have said to me that they feel kind of lost when it comes to using social media. Not everyone uses social media and some of us have our preferred platforms that we feel comfortable with and don't know anything about some of the other platforms, right? Some of us say using social media is just a bit of fun. And it's, you know, a bit of a distraction from real life. So we have lots of attitudes and beliefs around it.
And there's lots of challenges in addressing social media, because as I said, the platforms are constantly changing. And it's really hard to stay up-to-date. And so lots of people are really uncertain about all of those factors, and then they are, we've also got all of these medical and legal responsibilities, and we don't know where our boundaries are, in terms of navigating risks— whether we should be gatekeepers, or whether we should be just supporting people with information and education and coming in and supporting them if problems happen. Lots of people just basically want guidance, was what I heard. They want to know when to introduce the use of social media. They want to know when to let go of control of how people use it, and how to encourage really positive interactions. I feel like a lot of people have told me that because they're so uncertain, they tend to be mostly restrictive, rather than proactive. And so that restrictive practice occurs in lots of different ways.
So it could be encouraging, and helping families to keep devices at home and away from people who have a brain injury. It could be that they give people the devices, but they limit the internet connectivity, so they can't use them functionally. Or it could be that they manipulate the privacy settings. So it allows people just to lurk and watch other people's posts, but doesn't let them post and interact. And so, you know, there's often issues where family members are encouraged to monitor social media posts for appropriate content and things like that. And I find that's, you know, not ideal for anyone, really, no one wants to have to do that. And no one wants that to happen to them. And it can create lots more barriers to autonomy. I'm pretty sure if my parents were telling me what to do and what not to do in social media, I'd not have a great response. And I also feel if I tried to tell my kids what to do and what not to do, they'd probably go straight out and do what I told them not to do. Because as if I would not because I'm old. Right? And not cool. There’s probably another word for cool now that I don't know.
You know, I think it's, it's really personal. It's tricky to navigate. And as clinicians, we've got to be really clear about what our attitudes and beliefs are and how they influence what we perceive as appropriate or inappropriate and how we navigate those conversations. I love referring people to the Mark Ylvisaker and Tim Feenye paper that's about Dobermans and Poodles. Because it really does push people to think about how we interact and influence people in our rehabilitation practices. So I think as clinicians, we want to be proactive, but we're just not quite clear on how we should do it.
Lyssa Rome
In one of your papers, you wrote about how we as speech language pathologists can move from a sort of paternalistic attitude toward supporting the autonomy of our clients with acquired brain injury. And it's something I think about a lot, not necessarily just in this context of social media, but in all other kinds of ways. And I'm wondering if you could say a little bit more about that, and about how SLPs and other rehab professionals should be thinking about including social media training and the work we do?
Dr. Liss Brunner
Yeah, it's really tricky. Because, you know, we don't want to be restrictive. We don't want to be gatekeepers, we want to be supportive. And I feel like sometimes when we don't have guidance, from our evidence in the research or practical resources, we can flounder a little bit, particularly when we know there are so many risks associated with something like using social media. I think we can probably all acknowledge that restriction isn't the answer, because it doesn't set people up for real life. It doesn't give them opportunities to learn from mistakes, which is what we would do a lot of the time in real life.
I think one of the things that we can really do is harness the knowledge and skills of the person themselves, to help us as clinicians to know more about how they want to use social media, which platforms they're interested in, particularly if we've got no clue about how to use it ourselves. And so this could be a way to really educate ourselves, and kind of have more of a collaborative approach with that person. So you can set goals together, you can identify what's going to look like successful social media is to that person. How can we use what they did before their brain injury to guide us in terms of, is this something you want to get back to? Or do you want to do something different now? Those sorts of things. We can look for ways to provide them opportunities for participation, and give them some instructions on what might work really well. Let them go and try that. Give them education and really constructive feedback, so that they're working towards those positive interactions and trying to mitigate those risks in that really proactive way. Obviously, I think we need some policy around this, and guidance so that we can actively support people.
But I think probably one of the first things that we need to do is address social media goals in rehabilitation. And these can be informed by other successful brain injury rehabilitation approaches, you know, so we've got lots of information on functional rehabilitation, we know that more meaningful rehab is motivating and more likely to have better outcomes. And we could adopt strategies that have been used in rehab that support other activities that we feel are higher risk. So always I think of return to driving. You know, we support people, occupational therapists, support people to return to drive and I think that's inherently really dangerous. But we do it because we see it as a really important goal for people to return to after injury. I kind of feel that social media is kind of in a similar vein, we know there's risks, let's put education and practice in place to support them to do well.
Lyssa Rome
Speaking of education and practice, you've created a training program for people with acquired brain injuries on how they can start to successfully use social media. So can you describe that and tell us a little bit about that program?
Dr. Liss Brunner
Yeah, I mean, I worked as a clinician for many, many years before I got suckered into research and fell in love with it. And so I always want to think about the practical implications of the research that I'm doing, I want to provide resources and guidance. And so I was very lucky to be able to work with the team at Sydney Uni, and the University of Technology in Sydney, and brain Injury Australia. We were able to source some funding through a grant, which was fabulous. And we had this larger project called the Social Brain Toolkit. And part of that was developing social-ABI-lity. And so it meant that we were able to work with people who've had a brain injury, some family members, some clinicians, and other researchers to design this social-ABI-lity program. And essentially, it's a free online training program on how to use social media after brain injury.
Very simply, it's designed so that people with a brain injury can do it themselves, or they can do it with family or a friend or a clinician to support them. It takes about two to three hours to work through everything. And there's four modules, and so the modules are: What is social media; staying safe in social media; how do I use social media; and who can I connect with in social media. And we've really used metacognitive principles to support people to make a plan for using social media in a way that really suits them. And so we wanted to give them ideas on staying safe. When using social media and cyber safety, even those, there's one module on staying safe. Cyber safety is actually threaded through all four modules, because it was such a priority for everyone that we spoke to. And it just provides people with opportunities to learn about using social media, and really promoting the idea of finding social media buddies and building up a support network in social media. So there's written info, there's videos, there's questions to work through, there's a printable worksheet, so people can write down and keep the messages of the four modules. And things like that.
We've run a pilot study, so that people could test out the prototype. And they found it was quite valuable. They thought it was really engaging and functional. They also told us what they didn't think was working. So we tweaked it, and hopefully made it better. And then we actually piloted that again, because we knew that just the training by itself was probably not going to achieve the best outcomes possible. We wanted to know whether group intervention would help. So we kind of got people to do the social-ABI-lity program, and also a peer practice group. So we set up the social-ABI-lity plus a social media practice group kind of thing. We set up some Facebook groups, because Facebook is one of the social media platforms that lets you set up a group and have private conversations. But you also don't necessarily have to be friends with everyone. So it meant people could keep their distance if they wanted to.
In this study, we ran two groups for 12 weeks. And we basically just gave them stuff to talk about and connect with in this Facebook group. We also added in occasional meetups on Zoom so that people could meet each other face-to-face, even though it was online. So, you know, at the same time, they could have conversations and get to know each other in that way and see each other's faces. And the two groups found that this was really beneficial. So they had more confidence in using social media and they were just thinking about using it in a very different way.
The other thing that we thought about though was we know that there's just this connection between people who've actually lived the path, rather than, you know, being directed by someone like me who hasn't raised this difference in connection. And so we wanted to know whether having a peer moderated group would actually change things. And so we've recently just run a peer-moderated group. And so we kind of sweet-talked two of our previous participants who were quite active in the groups and said, “Do you want to be part of our research team? Would you like to moderate a group? And we'll see what happens.” And so we negotiated with these two awesome people. And they ran the group for eight weeks. So we shortened it a little bit just to make it more feasible and test it out. And before we started the group, we met with our two peer moderators, and said, “What do you feel comfortable doing? What don't you feel comfortable doing?” And we negotiated our roles before we even started, and even though they weren't significant changes in confidence, or any of the quantitative data that we collected in terms of quality of life and things like that, the conversations that people had, were just, I'm going to use one of the moderators words “profound.” They were so different, they were more poignant, and deeper, the conversations that they had in these peer-moderated group, and the reflections that all of the participants had really showed that they connected on a really different level, which was quite lovely. Again, they found it was all feasible and engaging. But there was something about that added element of the peer moderators that made it extra awesome for the people involved, as well as for the peer moderators themselves, they just found that they had improved confidence and improved sense of self for being involved in it. So it was that sense of giving back that really made that group scene, which was really lovely.
Lyssa Rome
I think that that's so exciting. And it makes me wonder what else you're working on? And what's coming next.
Dr. Liss Brunner
Yeah, I mean, there's so many ideas, and it's just a matter of actually making them happen. Lyssa, at the moment, were actually designing a social media communication assessment tool that we hope will really help not just clinicians, but also people with brain injury, to start this process of figuring out their purpose in using social media and what their goals might be. And so we're designing it with people with brain injury and clinicians around the world. So that hopefully, it will be really relevant to everyone to just start those conversations. So we hope to have the first version of this available to share freely, hopefully, by the end of the year—next year, definitely. But I'm really excited to see how that pans out. That's the first next step.
Lyssa Rome
Yeah. I think that that is really exciting. And it it, it reminds me of something else that you've written about, which is how SLPs can almost assess their own social media use or think about it, and step back and think about it in order to better help their clients in their social media goals. And I'm wondering if you could explain a little bit about that for our listeners.
Dr. Liss Brunner
This is some work that I actually really loved doing. I think one of the things that can really support how we're able to assist others in using social media is to be really aware of our own use of social media. And I think in this particular paper that you're referring to, it's like we use the metaphor of a garden. And we kind of encouraged people to think about their own use and purpose of using social media. And we used this very arty based approach to thinking about our professional social media identity. And so we kind of describe this process of visualizing your own social media garden. And so it's a metaphor you can use to think about your purpose and build a strategy around how you're going to achieve that. And I think it can be used to get kind of like this real understanding of what social media really means to you, and identify aspects of your own professional identity that are important and could be enriched through using social media. So I think, you know, if you're interested in not just how you use social media professionally, but also how you can help people clinically, in this paper, we really tried to provide another resource to outline strategies for using different techniques to build up your professional and clinical practice.
Lyssa Rome
For me, as a clinician, I think one of the takeaways from this conversation and from reading your articles, which we will link to in the show notes, is this idea that we should be reflecting on our own social media use, and our own assumptions about social media use and its risks and its benefits. What other takeaways should listeners be thinking about—things that they can implement in their own clinical practice?
Dr. Liss Brunner
I couldn't agree more, Lyssa. I think reflecting on your own social media use is really powerful. I think it's a really good place to start. And I think then you can just start by having the conversation with people asking about why they use social media. Which platforms are you interested in? What do you want to get out of using social media? Who do you want to connect with? Just having those conversations, I think will give you very rich data to start making some decisions, having ideas around what goals could be targeted. I think, as you said, we'll put the link to some of my papers. But certainly the facilitators that I've mentioned in the AJSLP paper, can be kind of those five factors that can really guide you in thinking about the different aspects to consider around social media use. So you can kind of use that as a bit of a guide, until we're able to create and trial new resources to support that further.
I think there's probably three key resources that I typically recommend that people check out if they want to support people to use social media. I think the obvious one that I'll point out is the social-ABI-ity program. And we'll pop the link in there. I think the other thing that I'd like to mention is another free online training program called Cyberability. And this has actually been designed by some colleagues here in Australia at Monash University, led by Dr. Kate Gould. But it's been built in collaboration, again, with people with brain injury, but who have also been scammed online. So they've got that lived experience. And they contribute their strategies and tips and what they've learned from going through that experience in this training. So I'll make sure that we get the Cyberability training link for you as well. The other resource that I find really useful here in Australia, is that we've got the Australian eSafety Commissioner website. And it's actually been supported by our government to provide lots of advice and resources on staying safe online. And I think, for kids in particular, I can be really handy. So I don't particularly work with kids. But I find that some of the resources there are really good if you do work with children. And there's actually an eSafety guide. And so it actually lists all of the different social media platforms and talks about how to protect your information and report harmful content on those particular platforms. So I think that's a really handy tool for people to know about as well.
Lyssa Rome
Those seem very useful. Thank you for bringing those to us. And again, we'll link to those resources. I am so glad to have had this chance to talk with you and I'm really looking forward to all of the exciting things that you're working on now. Dr. Liss Brunner, thanks so much for being a guest on this podcast.
Dr. Liss Brunner
Thank you so much for having me, Lyssa. It's been wonderful. I could talk about this stuff forever and a day. So I'm really pleased that we've had this opportunity. Thank you.
Lyssa Rome
And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.
Additional Resources
Contact Liss: [email protected]
eSafety Commissioner: www.esafety.gov.au/
eSafety Guide to Staying Safe Online: www.esafety.gov.au/kids/I-want-hel…ing-safe-online
Cyberability - free training on how to stay scam safe after brain injury: www.cyberability.org.au/
social-ABI-lity - free training on how to use social media after brain injury: abi-communication-lab.sydney.edu.au/courses…I-lity/
Brunner, M., Hemsley, B., Togher, L., Dann, S., & Palmer, S. (2021). Social media and people with traumatic brain injury: a metasynthesis of research informing a framework for rehabilitation clinical practice, policy, and training. American journal of speech-language pathology, 30(1), 19-33. https://doi.org/10.1044/2020_AJSLP-20-00211 *Email Liss for a copy*
Brunner M, Rietdijk R, Summers K, Southwell K, Avramovic P, Power E, Rushworth N, Togher L (2024) ‘It gives you encouragement because you're not alone’: A pilot study of a multi-component social media skills intervention for people with acquired brain injury. (Invited paper for a Special Issue on SLT/P clinical management of traumatic brain injury across the lifespan), 59, 543–558. https://doi.org/10.1111/1460-6984.12806
Brunner M, Rietdijk R, Avramovic P, Power E, Miao M, Rushworth N, MacLean L, Brookes AM, Togher L (2023). Developing social-ABI-lity: an online course to support safe use of social media for connection after acquired brain injury. AJSLP (Invited paper for a Special Issue of Select Papers from the International Cognitive-Communication Disorders Conference), 32(2S), 924-940. https://doi.org/10.1044/2022_AJSLP-22-00099
Brunner M, Rietdijk R, Togher L (2022). Training resources targeting social media skills: A scoping review to inform rehabilitation for people who have an acquired brain injury. JMIR, 24(4), e35595. https://www.jmir.org/2022/4/e35595/
Brunner M, Bryant L, Turnbull H, Hemsley B (2022). Developing and sustaining a social media ecosystem in speech-language pathology: Using innovative qualitative methods to visualise and cultivate a social media garden. IJSLP (Special Issue on New perspectives, insights, and practices: Qualitative research innovations in Speech-Language Pathology), 24 (5), 558-569. https://doi.org/10.1080/17549507.2022.2069860 *Email Liss for a copy*
Ylvisaker, M., & Feeney, T. (2000). Reflections on Dobermanns, poodles, and social rehabilitation for difficult-to-serve individuals with traumatic brain injury. Aphasiology, 14(4), 407–431. https://doi.org/10.1080/026870300401432
University of Sydney profile Acquired Brain Injury Communication Lab website Twitter/X @LissBEE_CPSP Mastodon @LissBEE LinkedIn Instagram Facebook -
Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about aphasia, the LPAA model, and aphasia programs that follow this model. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Conversations Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for our episode that will feature Lauren Bislick, in which you will hear about friendship, yoga, mental imagery and aphasia. These Show Notes accompany the conversation with Lauren but are not a verbatim transcript.
In today’s episode you will hear about:
the value of friendship in our lives and Mission SPEAK,
ideas for creating an accessible yoga program for person with aphasia, and
the value of mental imagery.
Dr. Janet Patterson: Welcome to this edition of Aphasia Access Conversations, a series of conversations about the LPAA model and aphasia programs that follow this model. My name is Janet Patterson, and I'm a research speech language pathologist at the VA Northern California Healthcare System in Martinez, California. Today I am delighted to be speaking with Dr. Lauren Bislick, a newly minted Associate Professor at the University of Central Florida, in the School of Communication Sciences and Disorders. Lauren is also the director of the UCF Aphasia House, and the director of the Aphasia and Related Conditions Research Lab. Across her work efforts, Lauren investigates the diagnosis and treatment of acquired apraxia of speech and aphasia, the value of mindful body practices such as yoga, friendship development, and interprofessional education and practice.
In 2023, Lauren was named a Distinguished Scholar USA by the Tavistock Trust for Aphasia UK. The Tavistock Trust aims to help improve the quality of life for those with aphasia, their families and care partners by addressing research capacity related to quality-of-life issues in aphasia. Congratulations on receiving this honor, Lauren. Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the influence of the Tavistock award.
Welcome Lauren, to Aphasia Access Conversations.
Dr. Lauren Bislick: Thank you, Janet, and thank you Aphasia Access for having me. Also thank you to the Tavistock Trust for the review team for nominating me and for selecting me. I'm truly very honored to be a recipient of this award.
Janet: It's a well-deserved award. Lauren, as we said, you were named a Tavistock Trust, Distinguished Scholar USA for 2023. You join a talented and dedicated group of individuals in this award. How does receiving the Tavistock award influence your clinical and research efforts in aphasia?
Lauren: First, I'll say again, I was truly honored to receive this award and was definitely surprised. The nomination announcement occurred at the Clinical Aphasiology Conference, and they didn't give us a heads up that the announcement was coming through, so I was very surprised. I think in terms of how this has influenced my clinical and research efforts as an academic, and as a clinician. I think a lot of people can relate to that feeling of imposter syndrome, and so receiving this award has helped me push that feeling to the side a little bit in some aspects of my work and of what I do. It's also allowed me to feel very proud about what I've been able to do. but more so through my collaborations and my students and the community that we have at UCF. It's allowed me to grow connection. Since receiving this award, people have reached out to me to talk about collaboration or wanting my help in terms of more of a consultant role. It's allowed myself and my lab to reach a larger group of people and has definitely supported that emphasis on quality-of-life work, which is not necessarily the training that I focused on when I was in my doctoral program. That’s been something that I've come into in my time as an assistant faculty member or a junior researcher. It feels very good to be acknowledged for that and for these lines of work being supported.
Janet: And well deserved, for certain. Lauren, I would like to begin by asking you about your recent work investigating the role of friendship for persons with aphasia. I believe in the power of friendship and community during joyful times, and also during sad times in one's life. One of the unfortunate consequences of aphasia can be the loss or diminishing of friendships, or the communication skills important to developing and sustaining friendship and community. How did you become interested in this aspect of aphasia? And what conclusions have you drawn from your research?
Lauren: Thank you for this question. One of the things that I talk about frequently in both my aphasia course and the motor speech disorders for our graduate students, is how individuals with acquired communication disorders, whether it be linguistic, or motor based, is that their social circles get smaller, and we know that's a problem in life. Friendship is an essential component of quality of life, and as you said, whether celebrating the good things or you're going through a hard time you need those friends. This is an important area that I believe gets overlooked although now we have a couple of different groups looking at friendship and aphasia, which is wonderful. I actually have to thank Dr. Elizabeth Brookshire Madden for pulling me into this work. She is at Florida State University, and I like to call us aphasia sisters. We went through the same doctoral program, and she was one year behind me. We became very close during that time, both as friends, but also in the work that we do. [Aphasia Access note: Elizabeth Madden was selected as a Tavistock Distinguished Scholar USA in 2024.]
One of the other faculty members at Florida State University, Michelle Therrien, does work on friendship, but in the pediatric world. This grew out of conversations between Liz and Michelle, where they started talking about how we can look at friendship and aphasia. Clearly, we all believe it's an issue, but it hasn’t been well investigated. That was shortly before the team Project Bridge Conference, which is really what helped initiate this kind of area of research for our group. Liz and I met at the 2018 Project Bridge conference and started facilitating a friendship group; she took the lead in this area. I got pulled to the yoga group, which we'll talk about later. Liz talked with a number of care partners of individuals with aphasia, and started discussing their social groups, and then friendship. Leaving that conference, she had some really great ideas about where to go next and what was needed in the area of friendship. From there grew her team of myself, Michelle Therrien, Sarah Wallace, at the University of Pittsburgh and Rachel Albritton, who's also at FSU.
In our first study, we did a survey with SLPs trying to ask if SLPs see friendship as being an issue? You know, is this us projecting, or is this something that clinical speech-language pathologists are seeing as an issue? If so, are we addressing it in the field? What that initial study showed us was that, yes, SLPs report that their clients are experiencing loss or difficulty with friendships. They also reported that there are barriers, there aren't assessments that ask about friendships, and there aren't interventions. So, while they see this as an important thing, and something that SLPs believe that this was within our scope of practice, they need a little more guidance as to how to support people with aphasia in terms of maintaining friendships, and then also developing friendships.
Following that study, we then spoke to people with aphasia and also spoke to caregivers of people with aphasia to get their perspectives and their lived experiences. What happens to friendship, immediately after a stroke? In that acute phase? What happens to friendship during that chronic phase? And then where are they now? What we found through these conversations is that many individuals reported that their friendships had changed after they acquired aphasia, both in the acute phase and the chronic stages. The same could be said for caregivers as they are navigating this world as caregivers. They are experiencing changes in their friendships. With aphasia being a chronic condition, this is something that people are living with for the rest of their lives. Friends can kind of be there in the beginning, and that acute care phase where they send messages or come by to say hello and show their support. As they realize that the communication impairment isn't going away, they don't know what to do and may get a little uncomfortable, feeling bad that they don't understand their friend with aphasia, or they don't know how to support them in their communication, or this problem isn't disappearing. This is me projecting, but I believe that's what's happening and what we're seeing is that people with aphasia, and their caregivers are reporting this loss. They also are reporting gaining new friends as they become ingrained in social groups. They meet other people with aphasia or care partners of other individuals with aphasia and develop friendships that way. They are also reporting smaller social groups, smaller groups of friends from their pre-aphasia life, dwindling for a lot of people. We think from our research what we're finding is that we really need interventions that target friendship maintenance and development. Some of that may be as simple as providing education, inviting friends into the therapy room. We do this with care partners, we can also offer this to friends to see how we are interacting with your loved one with aphasia. We can provide key tools to support communication; I really think a big piece of it is education. We’ve got to find the best way to navigate this in the clinical world. I think that's the next step not only for our group, but for the other groups that are looking at Friendship.
Janet: Lauren, you make some very good points in those comments. I wonder, do you have some brief thoughts or very specific ideas about how as clinicians, we can act in ways to optimize the friendship activities of our clients, or their care partners, recognizing though, that everyone has different styles and needs for friendship? It's like you say, we should not be projecting our desires and our styles and our needs onto our patients, but rather listen to them and figure out what their needs and desires are?
Lauren: Number one, right there, is listening to our clients, listening to their loved ones, what do they need? As I mentioned before, I think education is a really big piece of this. That may mean just having some materials as a speech-language pathologist that you can send home with family members that they can give to friends, right, so not just materials for that care partner, or the person with aphasia, but materials for friends. Here's something that will educate you a little bit on what aphasia is, there are some ways that you can successfully communicate with your friend with aphasia, here's what to expect. I think some of it is people just don't understand. They don't live in our world clinically, working with people with aphasia, working with people with communication disorders. For some, it's that they've never been exposed to, and so there's a discomfort with the unknown. I think education is huge. Also inviting friends. If you're going to have a counseling session with a care partner, and a person with aphasia, and their loved one, would they like friends to be at that table? Ask them. They may not, they may want it just for them and to be quiet and personal, but they may have some really close friends that they know they're going to lean on and want to be there. Opening the opportunity to invite other individuals and also inviting friends to support groups. Bringing friends to support groups, I think, would also be a space where friends then can observe interactions among people with aphasia, as well as their loved ones, and can have an opportunity to interact with other people with aphasia. So those are a few things that I think we can do right now. There are through many of the different resources like ARC [Aphasia Recovery Connection], for example, there are opportunities for education, communication partner training, and those are things that we can also plug friends into
Janet: Those are some very good ideas, Lauren, very good ideas. You have also worked to address the isolation felt by people with aphasia, and severe acquired communication impairment through your lab’s Mission SPEAK program. Can you tell us more about this program, please?
Lauren: Absolutely. Mission SPEAK stands for Mission to Promote Socialization, Participation, Engagement, Advocacy and Kindness, for people with severe acquired communication disorders. This grew out of a lack of participation among some of our community members who had more severe communication impairments. They felt that they were just unable to be successful in a group setting, and tried some of the aphasia support groups, but didn't feel like they were being heard, or that they had equal opportunity, or were just frustrated by it. It didn't feel right for them. And so, I started thinking about, well, how can we provide an opportunity for individuals who feel this way, or maybe they're just more introverted which could be another piece to why they don't want that large group. How can we provide opportunities where they're still getting to practice communication in a safe space, develop friendships, and just be able to interact to combat those feelings of isolation that people with aphasia and other acquired communication disorders report. Mission SPEAK is a program where the students in my lab, both undergraduate and graduate students, some are CSD, some pre-med, some in their med programs, where they have the opportunity to meet with an individual with aphasia or another acquired communication disorder on a weekly basis to have a conversation. It’s all via Zoom. These meetings can take any shape that the person with aphasia or the communication impairment and the student want to go with it. We have some individuals that meet to actually practice what they're learning in therapy and so the clinician has connected with my students to say ‘Hey, can you go over this homework with them or allow them opportunities to practice’ and sometimes the clinician will hop on to Zoom as well. We also have opportunities such as one of my students and one of our friends with aphasia are reading a book together and so they do shared reading. In another pair we have a young man who really just needs interaction, so he meets with two different students, and they just have conversations over shared interests. Sometimes his mom is there to help support communication. We see as time goes on that as the individuals are getting more comfortable with each other, and the students are getting more comfortable, there are emerging areas where there are overlapping interests, or maybe the student is learning from the person with aphasia say, about sports, for example. We have one group where our friend with aphasia is a huge sports fanatic. He was meeting with two young women in our undergraduate program who knew very little about some of these sports and so he's taught them. It's really fun. Again, they meet at least once a week. We have one individual that at one point was meeting with three separate students three times a week. The friendships that form from these smaller groups are something special. For some of these folks it's intergenerational, for others they are peers. What you see is that the students don't want to give up this opportunity. I have some students who have been meeting with their friend with aphasia for over two years now. They've gone from their undergraduate programs through their graduate programs, and they've just developed a friendship and don't want to let go of it, which I think is phenomenal. This is something that I would like to see open up as chapters across different universities. Students want these interactions so badly and there are so many people with acquired communication disorders that need an outlet, and that would benefit from this safe space to work on their skills to just have fun. It really can be whatever they want it to be.
Janet: What a great idea. You've got my brain spinning. And I've been making notes about some clients I've been thinking about who would benefit from exactly what you're saying, just the opportunity to have an interaction and conversation. Wonderful.
Lauren, another avenue that you've been interested in is the practice of mindfulness, especially yoga practice. How do you see yoga practice supporting the LPAA philosophy of living well, with aphasia?
Lauren: Love this question. I have to backpedal just a little bit to answer it to say, I was never a yogi until I started my doctoral program. If you know me, I'm 5’11”. I'm tall and I grew up playing all the tall-person sports and pretty much was of the mindset that if you're not huffing and puffing and soaked in sweat, then it wasn't exercise or it wasn't beneficial. Well, I was wrong. In my doctoral program, I was dealing with imposter syndrome. I'm also a first-generation college student. Being at that level, and with all the different hurdles that a doctoral program offers, I was really feeling that imposter syndrome and anxiety that surrounds it. Somebody suggested starting yoga, and it's what got me out of bed in the morning, and really grounded me to face my day and feel as confident as I could in my skin during that time. After doing it for a few years, I just had this aha moment of, wow, I would love to bring this to the aphasia community. It's helped me with my anxieties and my areas of self-doubt and has just allowed me to also be present. I can only imagine for some folks with aphasia the anxiety that they may have surrounding communication, or just feeling okay with where they are in this part of their journey and that acceptance piece. Then I pushed it off. I said, well, I can't do that now I have to wait until I get tenure, I've got to focus on this very systematic treatment development program. I can't do more things.
Then in 2019 when I was an assistant professor, just my first year at UCF, I went to Project Bridge again thank you, Jackie Hinkley. While I was there, there was a small group that consisted of Dr. Amy Dietz and her friend with aphasia, Terry, who were at a table, and they were promoting yoga for aphasia. I was walking around, and I saw that table and I thought it was amazing. I went over there to have a conversation with them. Amy Dietz had just finished a small pilot project looking at methodology of how we make yoga accessible. And so I talked with Amy and I talked with her friend with aphasia, Terry, about their experience, and then more people started coming to that table; Susan Duncan, who is aphasiologist and a speech-language pathologist and a yoga practitioner, and then also a person with aphasia, Chase Rushlow and his mom, Deanna Rushlow. All the whole rest of that conference, we hung together, and started planning out the trajectory of how to bring accessible yoga to people with aphasia and to the aphasia community. Chase had experienced yoga, post stroke, and as a person living with aphasia with his mom, they shared their story about how it brought them together, and how it grounded him, how he found Zen. It was so fruitful being able to have these conversations with people with aphasia, and also their care partners, and them telling us what yoga has done for them. Not only did we all have our own experiences with yoga from myself, Amy and Susan, but then we also were getting this feedback from the rights holders, right from our patient stakeholders. And so this group moved forward.
Sorry, I had to backpedal there a little bit. Since that time, I'm so proud of what we have done as a team and what has unfolded. I was very fortunate to meet a yoga therapist named Karen Cornelius here in the Orlando area and together, we've been able to build an accessible adapted virtual yoga program for people with aphasia. It started as kind of this feasibility study with our own aphasia community group here in Orlando, getting feedback from them, figuring out how to make the language accessible, what visuals are helpful? What do people with aphasia want from a yoga practice, were there things that they liked, or things that they didn't like. We've had this really long but very informative process of delivering yoga from a yoga therapy perspective, caring experience, and then figuring out what to spend more time on and how to present things verbally and visually. Now I feel like we have this ongoing, strong, adapted yoga community that we're able to offer. We offer it every Friday at 11am. And we have participants from all over the US. We still have a strong group from Florida, from the Orlando area, but we've got people that participate from California, we've got folks from in the middle of the state, we've got people from Kentucky, we've got people from Pittsburgh, we have people from up north. And we also have a participant from Bermuda. It's amazing to see all of these individuals who would have never met each other otherwise come together so that they can have a yoga practice. For some of these folks, they participated in yoga before their stroke, and then had a really hard time getting back into it afterwards because of the language impairment, the language barrier really. Yoga is a very language heavy practice. The modifications that we've made have been really helpful in making it accessible. But then we've also brought in others that never looked at yoga before and experienced it for the first time and have heard their report that they reap the benefits of it. What we're seeing in both our qualitative research, and also in our quantitative research is that people are reporting reduced stress after participating in at least eight weeks of yoga, better sleep quality, and increased resilience. Some have discussed better pain management, so they feel like their pain, although it's not gone away, that they are able to go about their daily life without pain taking as much in terms of resources from them as it did prior. The biggest thing to I mean that sticks out is people are talking about self-acceptance. Yoga has helped them accept where they are right now in their journey. The last thing I'll say along these lines is there is something so powerful about having individuals come together in this group and there's conversation that happens at the beginning and at the end, just like you would if you walked into a yoga studio. I think it's that they're all working on a common goal, in this hour, and very little of what's being done is focused on communication, the effort is taken away. They're really just sharing a space with each other, enjoying that space, doing something that's making them feel good. And they're not having to think about their impairment. There's something really special with this group.
This work has now been funded by Orlando Health, which is our one of our big hospitals in the area. We're working with an interprofessional team and actually bringing yoga therapy into the inpatient rehabilitation program. This has been really neat, because Karen, the yoga therapist, and I are working with an interdisciplinary team of speech-language pathologists, physical therapists, occupational therapists, and recreational therapists. We'll have a group of individuals and all of these different professionals in the same room, and we're getting feedback from the professionals about what they like, what's facilitating this program for them, and what are the barriers. At the end, they will be the ones running this program, and they are very committed to keeping it up and running. We're also of course, getting the feedback from the people with aphasia and other brain injury survivors in this group, as well as their caregivers that are coming in and participating. I think now I can say I've done a good chunk of research in my life, and this area is the most fun and the least amount of work. Everything has happened organically. There has not been a moment where it feels like this really is work, or I don't want to do this. It's all just unfolded so beautifully. I feel so fortunate to be a part of this, I'm so thankful that Project Bridge pushed me into this, in a sense, when I thought I had to put it off for years and years to come. It's been a lot of fun. For our listeners, we have an ongoing yoga program on Friday mornings at 11 am EST, that is run by a yoga therapist who is amazing, and well versed in aphasia. I welcome people to join us.
Janet: I am moved by your story, Lauren, both your individual journey through your doctoral program and finding yoga to help your own self, and then taking that into the aphasia community. Several times you've used the phrase, ‘your journey through life’ or ‘your journey of life’. And isn't that true? We're all on a journey, and it changes year to year, or decade to decade, if you will. It's exciting to know that you're finding a way to connect people with aphasia to a larger community that focuses on yoga, for example, rather than focusing on the impairment that they have living with their aphasia. Thank you for that. It sounds like it's a great success, and I hope it will continue to be so good for you.
Lauren: Thank you.
Janet: Lauren, another area of investigation, you're examining the benefit of motor imagery and home practice, for enhancing treatment outcomes in persons with apraxia of speech. This is a little bit different from yoga and mindfulness. But yet at the same time, it's about what people can do in their own selves, I think to improve their communications and improve their interactions with others. Will you describe this work and your current findings, please?
Lauren: Absolutely. And you really did hit the nail on the head because it does overlap a lot. It's different in that we are working on the impairment here, but the motor imagery piece grew out of what I was seeing with yoga. Many of our participants have hemiparesis, for example, or they might have apraxia of speech or more severe aphasia. When they are unable to produce a certain movement, or unable to say a certain mantra, we tell them just to visualize. If you can't move that arm that is fine, or if you can't move it to the extent that you want to that is okay, just imagine that arm moving. Just imagine or hear yourself saying this affirmation.
Based on what we were doing with the yoga I started digging a little deeper into the research on motor imagery and mental imagery, and that's where this idea arose. Surprisingly, there hasn't been a whole lot of work using motor imagery for rehabilitation of apraxia of speech. There's been a little bit of work in the area of stuttering, and motor imagery is used significantly in sports medicine, athletic training for professional sports, and musical training, and also rehabilitation of limb and gait, but really very little about speech. And so, I found a hole. My thought was maybe this motor imagery piece is a start, it's something that people can do at home without much support, and maybe it will impact their performance, either that day or in a therapy session a few days later. I wrote a grant and it was funded through the National Institutes of Health. The grant focused on looking at the impact that motor imagery has when combined with behavioral speech treatment. My thought moving forward was that I got my Ph.D. not only because I wanted to know more and wanted to create treatment programs, but I wanted to prove to insurance that healing the brain post stroke, or rehabilitation of speech and language post stroke, is not the same as healing a broken bone. It takes a lot more time. It's ongoing. In my time, I have not seen a change in insurance. In fact, I think it's gotten worse. So my thought into this is we've got to give clinicians and people with communication impairments the opportunity to work more from home. What can they do on their own to bolster the impact of those few treatment settings that they actually are getting, if they are treatment seeking individuals. The idea is, the hope is, that through motor imagery, what we're doing is priming the neural network. Patients can go home with targeted stimuli that they're working on, for example, and just imagine themselves saying it accurately, thinking about how the articulators are moving, visualizing themselves being successful. Hopefully, we're priming those networks. Then when they go into that treatment session, those networks are primed and perhaps we see a boost in performance. The hope, the long-term goal, of this is to build a home practice program that can be accessible to people in the comfort of their homes, easily and free of charge. The speech-language pathologist can also interface with the program to put stimuli into it, for example, so that it can support what they're working on in therapy. We're still in the early phases, but we just completed our first qualitative interview after somebody has completed the whole program, and they really liked it. I thought people were going to be bored with motor imagery because we're not yet allowing them to say anything. In the motor imagery piece, we really want to focus on what does imagery add, but they really enjoyed it. Our first participant, what he said was that at first he didn't like it, he thought it was weird. After we went through practice for a few weeks, he would come into the therapy session and we would do a probe and afterwards if I commented that he did really well on that today, or in the treatment session itself, or if I was seeing a lot of success with certain targets, he would say ‘the homework, the homework’. My thought was that he felt like the homework is helping. He was encouraging and felt like it was helping. We've only run a few people through, so right now, it's preliminary findings, but what I'm seeing is a benefit when they are going home and having this opportunity to practice. Even though it's not verbal practice, it's motor imagery, I'm seeing a change when they come into the session. The study itself is funded for three years, and we have the opportunity to provide free therapy for 18 individuals with co-occurring apraxia of speech and aphasia. I'm excited to see what that group data look like, but right now, and with just the conversations that we're having with the folks that are coming through, I feel very optimistic about this program. It will definitely need to grow, I don't want it to be only motor imagery forever. It's a good first step.
Janet: That is very exciting to hear. I look forward to reading the results as you have more and more individuals with apraxia of speech move through your program.
Lauren, as we draw this interview to a close, I wonder if you have some lessons learned that you would share with our listeners, as well as some Monday morning practices, that is actions that we can take on Monday morning to improve our interactions with persons with the aphasia or apraxia of speech.
Lauren: So I think first, and this is reflecting on what I do, I know many individuals out there, whether you are clinically working with the population, or you're doing research, you're in an area where you are giving. We are giving to support a community. The same thing that I tell our caregivers is to do something for you first, that will allow you to continue to give to others. What is something can you identify, something every day. When there's a little bit of something that you can do for yourself that just fuels you to be the best clinician, the best researcher, the best partner, parent, the many hats that people wear, to your community. That may look different for everyone. For some people, maybe it is meditation, for others maybe it's yoga, maybe it's running, maybe it's baking, everybody has their thing, but identify that certain something that gives you the energy and maybe the groundedness to serve your community.
One thing we've touched on, and if you're listening to this podcast, you know this, but listen to our friends with aphasia. Their perspectives give us so much more than we could ever pretend to know. I've learned so much from my friends with aphasia, even moving forward and in my research - thinking that I know what people want, talk to them, and then the realization this actually isn't an issue, this other thing is. Seek better understanding, otherwise, we're going up the wrong ladder and putting our efforts in the wrong area.
Building community through shared interests, that's what I'm trying to do a bit, and also incorporate student involvement; use your resources. With Mission SPEAK we really are trying to build community through shared interests. It's really neat to see how this unfolds. Even when you have a person with a communication impairment or a person with aphasia, who is maybe 30 years older than the student that they're meeting with, there are shared interests. And it's so neat, what they learn from each other and how this partnership grows, and this friendship grows. Then you also have peers, folks who have acquired communication impairments that are close in age with our students, and that takes on a life of its own as well. Try to match people up based on shared interests, or at least having someone that is really eager to learn. Also being open. Building community through shared interests supports what we've done with yoga. Here are folks that are finding peace and community and enjoying this activity together. It could be anything doesn't have to be yoga.
One other is interdisciplinary practices. When we're thinking about our friends with aphasia, not just thinking about the aphasia or stroke, when we're working with our more acute care friends, or those that are still on that rehabilitation trajectory. Stroke Survivors are dealing with more than aphasia, and I think sometimes we can lose sight of that. Making sure that there is an interdisciplinary team or you're offering interdisciplinary supports, asking what else do they need. I find that I've learned so much from my colleagues in physical therapy and occupational therapy. I work closely with an assistive technology professional who has just unlocked for me the world of supports that are out there that help people live well with aphasia, and also with hemiparesis. Supports such as for cooking with hemiparesis, supports for a computer adapted need, supports many things, such as positioning, seating, getting out there and playing sports, again, in an adaptive community. There are so many things that have happened, I think, over the last decade to make things more accessible for people post stroke. Educate yourself on what's out there.
Janet: Those are great ideas. Thank you so very much. And thank you, Lauren, again for taking the time to speak with me today about the Tavistock Distinguished Scholar Award, and about your work in aphasia.
Lauren: Thank you very much for having me.
Janet: You are so welcome.
I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show, please see our show notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at [email protected]. For Aphasia Access Conversations, I am Janet Patterson, and thank you again for your ongoing support of Aphasia Access.
Lauren, thank you for being with me today and congratulations on being named a Tavistock Distinguished Scholar on behalf of Aphasia Access and the Tavistock Trust. I look forward to learning about your future accomplishments, and seeing how you help people with aphasia and apraxia of speech on their journey of life.
References
Madden, E. B., Therrien, M., Bislick, L., Wallace, S. E., Goff-Albritton, R., Vilfort-Garces, A., Constantino, C. & Graven, L. (2023). Caregiving and friendship: Perspectives from care partners of people with aphasia. Topics in Language Disorders, 43(1), 57-75. https://doi.org/10.1097/TLD.0000000000000301
Therrien, M.C., Madden, E.B., Bislick, L. & Wallace, S.E. (2021). Aphasia and friendship: The role and perspectives of Speech-Language Pathologists. American Journal of Speech-Language Pathology, 30(5), 2228-2240. https://doi.org/10.1044/2021_AJSLP-20-00370
Resources
Aphasia Recovery Connection (ARC) https://aphasiarecoveryconnection.org
Aphasia and Related Conditions Research Lab and Mission SPEAK https://healthprofessions.ucf.edu/communication-sciences-disorders/aphasia-and-related-conditions-research-lab/
Project Bridge Project Bridge - Research Community in Communication Disorders
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Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.
I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature three voices, one of a partner of an individual with primary progressive aphasia, CeCelia Zorn, who also happens to be a former professor in the department of nursing at the University of Wisconsin – Eau Claire; along with Tania Riske, an SLP at the Mayo Clinic Health Systems Eau Claire, and Nancy Petersen, a social worker with expertise in grief and bereavement from Ability KC in Kansas City. Each of them have both professional and personal experience and expertise with grief and loss. June is aphasia awareness month, so we wanted to take this opportunity to share the lived experience directly. Today’s episode will address grief, death, and loss: leaning into a much-needed discussion.
Biosketch:
Our first guest, CeCelia Zorn, Ph.D., met her husband Wayne in high school in rural northeastern Wisconsin. Wayne died from the consequences of primary progressive aphasia last August, 2023. Since that time, CeCelia has continued her work as an advocate for families living with primary progressive aphasia and more recently about grief, death, and loss as a care partner. Cecelia brings multiple perspectives to our conversation about grief, death, and loss. She is a registered nurse and a lifelong writer. She has been an award-winning university professor for 32 years. CeCelia reads voraciously, plays pickleball, and is relearning how to play the flute – taking individual lessons, playing in community bands and auditing university music history class. She volunteers at the local free clinic and is an active member of the Board of Directors for Wayne’s former memory choir. On a daily basis, CeCelia strives for a life enriched by kindness, joy, perseverance, curiosity, patience, and collaboration. But she will be the first to tell you, “some days are easy but some days you just crash. Yet everyday it counts because I remind myself, life isn’t waiting for the storm to pass it’s about learning to dance in the rain.”
Tania Riske, MS, CCC-SLP is a speech-language pathologist at Mayo Health Systems – Eau Claire. She initially entered the speech language pathology field through her volunteer work with the Chippewa Valley Aphasia Group and graduated from the University of Wisconsin – Eau Claire Communication Sciences and Disorders program. Currently, she serves as an adjunct faculty member at UW Eau Claire, teaching undergraduate courses such as anatomy and physiology of the speech and hearing mechanism. Tania continues to enjoy treating patients with aphasia and their families within the LPAA Paradigm. Developing plans of care, counseling individuals’ unique lifestyles, goals, interests, and priorities. Tania is an avid trail runner and equestrian.
CeCelia, Wayne, and Tania were my guests for Episode 49 – Primary Progressive Aphasia: A conversation with Wayne Zorn, CeCelia Zorn, and Tania Riske.
Nancy Petersen, MSW. Nancy grew up just outside Tulsa, OK and has an undergraduate degree in Speech Language Pathology from Oklahoma State University. She received a Master of Social Work from Jane Addams School of Social Work at the University of Illinois at Chicago, where she worked in urban hospitals and neighborhoods. Nancy is currently a Community Liaison for Ability KC, assisting patients as they transition from acute care to an intensive outpatient complex neuro-trauma rehab program. Her job also involves providing conferences and education to the medical and general Kansas City community. In her 30 years in the helping professions, she has learned much working in a variety of areas including nursing homes, hospice care, a suicide hotline, senior home care and case coordination. She has served on both the local and national Board of the Funeral Consumers Alliance providing education and advocacy relating to consumer protections in the funeral industry. Nancy is also involved with the Children’s Mercy Hospital Rare Disease Patient Family Advisory Council, as well as the Ethical, Legal, and Social Integration (ELSI) Committee for the CMH Genome Project. Nancy has been married to Jimmy for 24 years and has an 18-year-old son with a rare disease, 21-year-old daughter, a cat, a dog and many wonderful friends.
Take aways:
Avoidance. We avoid difficult conversations and miss opportunities to engage our clients and their families in important discussions about loss and grief. Culture. There is a culture in the US of avoiding or sugar coating conversations about grief, death, and loss; using euphemisms to describe death. Prolonging. We (as a society) are often guilty of prolonging life at any consequence and failing to consider quality of life. Loss. Loss and grief do not exclusively apply to death and bereavement. They apply, as we know, to identity and loss of a whole host of pieces of our lives and identity, particularly following stroke and aphasia. PPA and degenerative loss. This loss is something we know is going to happen and open conversations about loss may help to open the door to bigger conversations about death and dying.Interview Transcript:
Jerry Hoepner: let's just kind of settle into a conversation. I really appreciate having the 3 of you here together. I know you all fairly well, but having the lens of a speech language pathologist, the lens of a social worker, and the lens of someone with the lived experience themselves is just a great way to have a conversation about a complicated and challenging conversation sometimes one that maybe people want to avoid. So, I'm just excited to talk to all of you. I'm going to open it up on the front end with a really broad question. I want to be careful, you know. I don't want to make you relive moments and things like that, but I also know that you are here because you want to be advocates for teaching and conversations about death and dying and grieving, and all of those processes. So, wondering if the 3 of you are willing to share a little bit about your personal background and experiences with grief. CeCelia, go ahead.
CeCelia: Yup, yeah, I happy to start. Thanks, Jerry, for kind of pulling us all together. I really appreciate the opportunity to be part of the conversation. The thing that comes to mind when you pose that question is my family history around dying and grief and death and I'm so fortunate to have had that family experience. I think it was sort of a balance between the emotional side of dying and death, and the practical side of dying and death, and our family held both of those at the same time. It wasn't just the emotion, and it wasn't just the practical aspects, but it was sort of, I don't know, running down a river of white water with one foot in each canoe, and I remember specifically, at my dad's death bed. There were 7 of us kids, and we of course, mourned his passing and were extremely emotional about that, and stayed with him 24, 7 for 3 weeks, etc. Etc. And but at the same time we were talking about. Should we have spaghetti or ham at his funeral luncheon? So, sort of the practical aspects of how is this all gonna come together in a few weeks when we knew the funeral was coming? So, for me, that's a strength that has carried throughout my life. And I I just am so appreciative of that. And I can only speak to my experience. Perhaps other families have had similar experiences, or one versus the other, or neither. But I just wanted to sort of throw that out there. That sort of ability to handle both things sort of in the same at the same time, has been a source of strength for me.
Jerry Hoepner: Wow! Thanks for sharing that, CeCelia. And I'm not sure that that is the experience of a lot of people that ability to do that. I want to take a step back, and mention something I should have mentioned. CeCelia. You kind of wear a couple of different hats, so you were a nursing faculty member for many, many years you have that holistic care, nursing perspective on grief and death as well, and then you also wear that lived experience hat as well. If I can use that metaphor in dealing with your husband. Wayne's death related to primary progressive aphasia. So just so. Our audience is understanding those perspectives. I think that's important. And to go back to what you just said, everyone has a different experience, and I'm not sure that everyone does process those things in parallel.
Jerry Hoepner: Nancy, I'll invite you to share a little bit next.
Nancy Petersen: Well, I'd be happy to. So, background is I have a master's in social work from Jane Adams at University of Illinois, at Chicago my experiences over the time figuring out what I wanted to be when I grew up, and what I ended up doing where I worked at a suicide hotline. For 3 years. I then worked in hospice for a number of years, including pediatric hospice while kind of in my life. At the same time my father died when I was 20, very unexpectedly at 52. I have worked in kind of every different version of the helping profession and nursing homes and pediatric settings and am currently working in complex neuro trauma rehab I was on the National Board for the funeral Consumers alliance when all of a sudden, my son was diagnosed with a rare progressive, neurodegenerative disease, 6 years ago and we're dealing with what that means and what that looks like. What that does to a 13-year-old when they get diagnosed with something that will limit his life. And so have kind of truly become aware of the difference between someone who talks about life and things that people need to know and what how things should be in an academic way, and truly have learned what it feels like to live that you know, your parents are important, but kids are different. They hit different. And when you kind of start living that deeply, what I have learned becomes a lot closer to home, it just hits really close to home. So that's kind of my background. I did a lot of I wrote a section for Jerry's book about you know, one of the textbooks about death and dying, and what I believe about it. I'm kind of curious having not read it for a while. How my! Just how the changes in what has happened in my life. And Clark was sick then. So, it's not brand new, but even then kind of the differences of what happens over time when you're living kind of a situation like that. And I just looked at something. I wrote a while back a presentation called Death as a 5-letter word and it has some interesting things in it as well. So, I think the topic of death has no answers. And the talk of bereavement has no answers, and very often people who are bereave, who are bereaved, or who are getting ready to, who are bereaving before the death, want there to be. And I think that's one of the biggest, although obvious. When you stop and think about it, that's one of the biggest issues that you're going to run into families is they want an answer to make it better. And it's very hard to explain to people they have to live it. That's part of the problem, and the issue with grief is that you can't step around it. If you do, you'll find yourself in far worse situation than if you live through it. So, I think for caregivers or those around you. There's a lot more to say about what to do for someone or with someone who's experiencing it. So, I try to look at it from all the different perspectives to see what sometimes nonsense I can spout. That sounds intelligent, because truly it is such an individual, it is so utterly individual. And there aren't right ways and wrong ways. People think there's a good way or a bad way, or they think there's a right way. And what happens is what happens. And the biggest problem is making sure that you know when it's kind of out of hand or when you need external kick assistance. You need to understand how long it lasts. You need to understand what happens in that and that it's okay. So much of what's going to happen that feels difficult or feels odd or feels out of place is normal. And maybe that's our goal is to normalize people's reaction to it is to normalize their own personal journey as not being something. Then you have to compare to anyone else's.
Jerry Hoepner: Yeah, that's such an important point. And again, really emphasizes the fact that all 3 of you are experts with multiple lenses. And I guess everyone is at some point in their life. You know you. You bring your personal background to it, your professional background to it, and then your experiences with life and death and grieving, and all of those things. So, really, I mean, I think we're really fortunate to have this conversation with 3 individuals who have such a broad lens, and are able to view death and grieving from multiple lenses like you all are. Yeah, thank you for sharing that. Tania. I'll let you jump in next. If that's okay.
Tania Riske: Yeah, that'd be great. Well, as a clinician, I think I really first sort of became interested in and in investing in conversations about grief because I saw a lot of patients who were facing terrible diagnoses and care partners who are trying to figure out how to sort that out and not having the opportunity to do that. Your neurologist was maybe going to be interested in providing analysis and checking in with you every few months, and maybe adjusting your medications. Your primary care provider was keeping an eye on your blood pressure and your cholesterol. And there just really wasn't a person or a provider who was acknowledging that there was going to be partings happening, that this you know, that this might be a diagnosis that was going to lead. Brief or certainly significant life changes. So it wasn't being talked about. It wasn't being supported, and that really started to make me feel like there was a that was a gap that needed to be filled, the conversations that needed to be opened and had and continued, it wasn't just a one and done kind of conversation, using it to be ongoing conversations and support. And as things change, the conversation maybe changes a little bit, and the resources change. So, I became really interested in the role of speech, language, pathologists, and other providers also in supporting brief and just. Incidentally, as this became a bigger part of what I was thinking about and taking up more headspace for me and making me really think about how I was practicing and how it's impacting patients and families. Incidentally, I lost an adult child. So, I have some of my own grief that I'm dealing with as well, and you can hear that coming up me a little bit right now. But it really shapes how I think about grief and how it's impacting families, and what they might need, or what they might want. And when I was hearing Nancy talk about there being no real answers, and gosh! Families want answers so badly and helping them explore through their grief. And what's right for them and supporting that. And when CeCelia talks about that practical versus the emotional standpoint having one foot in each canoe. I don't think that's an experience that a lot of families have. I think that that's such a lovely perspective and strength that you have, CeCelia but I don't think a lot of other families have that. So as a clinician, investing in families and helping them to have those conversations and recognize that there's not right or wrong answers. But the questions are very fair and very valid, and just be able to support that in a way that feels authentic and feels genuine and caring, and not filled with trite comments and superficial responses. And let's move on from this because we've got other things to talk about, I think, is really important.
Jerry Hoepner: Yeah, thanks for sharing those perspectives. Tania. And one thing that I want to highlight for this particular podcast is, we're working with individuals with communication impairments who have maybe additional barriers to talking about death and dying. So, I mean beyond the challenges that we have with what that all of us have in everyday conversations about death and dying. That's just an additional layer. From the standpoint of sharing education with them, but also decision making and planning that becomes so much more challenging in that context.
Nancy Petersen: Well, and more importantly, it may isolate them even further from those around them who could support them, who were having enough trouble, just having regular conversations with them. And now we need to have a conversation that's frightens them, that they don't know how to do and I will never forget one of my that I just read said that people who are trying to support people need to remember they're not expected to be Yoda like you. You aren't. You don't have to have the answers, and we for some reason think that is such an important thing that if you talk to someone about something difficult. I said. If you know suddenly, if you someone you know, has cancer, you're supposed to be able to talk to them about cancer treatment. I mean, I don't. The people that helped me the most in the most difficult situations in my life have been the ones who said the least and I don't know why that is hard for people to grasp or be okay with. Hmm. I think part of it is that we are really bad at silence in general and we feel like everything has to be filled. And I am one of those people who, when I get anxious, I just talk more so when I'm being silent is a learned skill, and that is something that many of us is skilled. Many of us don't have.
Tania Riske: I think you're right on with that, Nancy. It's so hard to be quiet and listen and I think especially many of us who are in clinical or provider fields tend to feel like it is my job and my responsibility to try to fix this or make it better. But that's not true. But, boy, it's that's what we want to do.
Nancy Petersen: Right. Even I have put in that situation, and knowing, you know, it's kind of the same thing about having a sick child, I know the right thing to do but I don't. My emotions. I'm not always. I don't always react with my brain. So, you have to have a lot of self-talk to say. Now, remember, you don't have to know everything, and quiet is good, and they know their own answers, and even with a degree in speech, I mean my undergrad in speech, pathology, so I only know enough to be dangerous. But my I mean social work teaches you to let people find their own answers, and it's still so difficult to do in a really serious situation to not want to fix and to not want to help and it's hard to believe that help is less in situations such as serious grief.
CeCelia: And maybe it's not necessarily just sort of pure silence, but it might be reframing.
Nancy Petersen: Reflection. Yeah, I agree.
CeCelia: You know. Help me understand what you're thinking, or help me understand what you're feeling, rather than sort of tolerating the silencing. When this person is done talking. Then I can go on to some real things, but sort of reframing that silence in a new way might be helpful in some situations.
Nancy Petersen: Certainly, active listening is/can be good. I mean, it can be very helpful in many situations. What I kept getting was, what can I do? when I was in that situation, all I wanted to say was, if you can't make my dad well, there's nothing you can do, and it almost angered me that people would ask, What can I do? Because there was only one thing I needed done, and nobody could do it. So, you kinda I would much have preferred, and I did prefer my friends, who were very active listeners, or who sat and padded in my leg or my arm, you know, and you also have to kind of figure out. Are they in the middle of the death, like are they? Is the death actively occurring right then, in which case silence might be helpful. But then, when they want to talk about it. When someone wants to really talk which happens inner, you know, it's interspersed in all of that that reflection and active listening and reframing and making sure you understand what they're saying can be, I think, most helpful.
Tania Riske: Oftentimes I've really seen my role as inviting the conversation, opening the door and making it a safe space for that conversation. Even if a patient or family isn't ready to have a conversation about grief that either they're experiencing or they're anticipating they may be or they're going to experience in the future. To know that first of all, I'm acknowledging that, and then also really trying to create that safe space with an open door that we can go to that conversation and that this is this is an okay place to start thinking about what might be coming, what we're afraid of. So, I think starting the conversation early is also important.
Nancy Petersen: Well, and here's one of the we. I'm sorry, CeCelia, do you wanna.
CeCelia: I was just gonna sort of concur with you, Tania, in terms of, in addition to that sort of the idea of repetition and patience that it's not just a one-time shot. Okay, this happened on Tuesday, 3 weeks ago, and now I don't have the space to do that. But sort of the need to repeat that open door, and maybe I wasn't ready 3 weeks ago. But by God, I really need to do this again. So please be patient with me, and please repeat this opportunity. So, the idea of repetition and patience seems important.
Nancy Petersen: And one of the differences is, a lot of people don't always have a Tania that they see regularly in life to do this and what the thing that I have seen happen so many times is that the person who so …, we get a lot of rehab and we do what we do. But sometimes we'll get people who have glioblastomas, and they want rehab and I'm not sure the patient wants rehab and that yes, getting stronger is helpful. And yes, that gives them more energy. And maybe they just had a reception, and maybe they really can build up a little bit, but it's so much the families who are in denial that want them to get better, and they'll grasp. But any straw to try to make their need to understand and accept what's happening to put it off just a hair longer. And when I worked in hospice specifically we would walk in. They actually even took the word Hospice off our name tags because families were insistent that we not tell the patient they were dying. What was always most amusing was that the patient always knew they were dying and would ask me not to tell their family they were dying. So, the conversations that weren't getting put off were grief related, and fear of death related so intensely. Both desperate to protect the other member of their family, the other group and we did a lot of trying to get to the elephant in the room trying to get to the thing that everyone knew was happening. But people get there so differently that it's very difficult, as the social worker put in the middle of that pers that situation, to figure out who's ready or what their reactions gonna be. If we decide to talk about this and how to handle that reaction because we would get I mean, we changed our name tags. We got so many families angry that we were supposedly letting their dying loved one in on the little secret they were dying and instead of us saying, It's not a secret. The word. Hospice is not going to come as a great surprise to them. We just took it off.
Tania Riske: Wow! That's really interesting. I do see on a routine basis what you're talking about, where families do not want death dying hospice any of those words uttered around their loved ones, and sometimes vice versa, too, but almost always it's families protecting their loved one who is dying. But to take it to that extreme of. We can't even have this on a name Tag, because it's just saying too much angering. Too many people is really fascinating, and I think very telling about just our whole thought process around death dying and grief.
Nancy Petersen: Our death, denying culture. What do you possibly mean? Having worked in it, I literally would sit at a table at an exposition. You know, when we're trying to talk to people about Hospice, and people would literally go away from our table and around like Hospice was somehow catching.
Tania Riske: Wow.
Nancy Petersen: And say, I'm not dying. I don't. Don't talk to me about it, and like literally avoid and it would catch me. So I mean I just I was always amazed at the number of ways people would avoid talking about something. That's one of the very few things you must never. You can't avoid. No matter how far away you walk them from my table. What it does instead is make you ill prepared for when it does come. Hmm, okay.
CeCelia: Wonder if we need to reframe the language that we use to describe people's reaction. You know, thinking about the negativity associated with some of the labels. I'm just. I'm just thinking about the word denial and avoidance aren't very positive words in my book. And yet we continue to label people in denial and avoidance. And I wonder if we could think about the meaning of the language, and how that might help people I don't know. Just raising the question. I don't have any answers, but.
Nancy Petersen: Well, I think there's a part of me that says, if you soft pedal it, you're not doing them any favors now, that's my belief, and I have been in working with death and dying my whole life. So, I know that I'm not your average person, but I blame society. I blame the way we talk about things in advertisements, the way we talk about things on the news. We don't even use the word die. We don't use the word death. We don't use the word, you know. We come up with all these euphemisms of passed on or lost. I think personally, they are not benefiting us. I don't think so personally softening the language. Now, if I'm dealing with a family that can't handle what I'm not trying to force this sudden societal change down everyone's individual throat. But what I am saying is that in general we probably need to. You know, when you talk in different cultures about death. It's something they talk about constantly. When you look at, look at the native Americans. Death is part of the circle of life. It's what there is. And we talk about. You know, vitamin water like it's gonna be the Fountain of Youth, and we're never gonna have to die if we take enough pills that are vitamins, and we drink this magic water, and we Yoga or Pilates that we suddenly have this option and America is known for I mean, I went and studied Hospice in England, and they were vastly different in how they approach death and how they handled pediatric deaths. Jerry knows not to get me started about that. We literally act in this country. We do not let children die, we will not, no matter how much we know. That's we can't stop it, we will not people die. I saw a 95-year-old woman with advanced Alzheimer’s getting a feeding tube put in and I, who did not know where she was in the hospital. She was terrified. She didn't know what was happening. It was a horrible situation, and I thought, well, probably the best thing we need to do is put a lot of food in her that sounds like the best ending for this and it just the whole thing sums up our inability to understand that if we talked about it more we might have a better reaction to it when it was time because when I've been around hundreds of people who were actively dying. They're very comfortable talking about it and they're very. They're anxious to talk about what they want and what's meant things to them and what they want to hear, and I would have family. Say, mama, don't talk like that. I don't need to hear that. I can't hear you talk about you dying right now. Don't talk to me about things like that. We're going to go make dinner, and we're just going to have a great dinner together, and push back on the dying person's desire to speak their truth and their what they wanted to talk about at the end of their life. And that doesn't. That didn't work either.
Tania Riske: I agree with that, Nancy, that we are really a society, that life at all costs prolong life at all costs, and I hadn't thought about that before in light of the fact that maybe that is tied into sort of our belief system in our conversations or the conversations and the beliefs that we don't have about death dying and grief. That because we don't talk about it, it's not Ok to talk about it that facilitates that we must prolong life no matter the costs. Not thinking about quality of life but instead, thinking about prolongation of life, and those are 2 very different things.
Nancy Petersen: And I see it all the time I was with the family, Father had a massive stroke. Daughters adored him, wanted him at no matter what Dad needed to get better. And so, they were pushing it better, and the dad looked at me with aphasia after a massive stroke. And I'm doing all this talking about our program, and they're so excited. And he looked at me and said, Why. yeah.
Tania Riske: There it is!
Nancy Petersen: Wasn't long before they let him die. They stopped coming and pushing for all of this, because he knew that the kind of stroke he had had was not going to work well with Rehab, that he had had a massive stroke and did not want to live like that, but his family was absolutely unable to manage that until he finally, after months of coming here and pretending to get better and stronger for them. And that's the other thing is, you're trying not to be mean to the family that loves you so much. They don't want you to die. But you know, let's not even get into the amount of money we're spending in Medicare, keeping people alive who have no, who, if given the choice, would never choose to live like they were living. I guarantee you they would not. And we can get into the ethics of that. When I was in Hospice we had a 36 year old man who had a ventilator and we had a 92 year old woman who was unable to explain on a ventilator who didn't, couldn't talk. The 36-year-old, said, I want to die. I am of... I have no psychiatric illness. I am not. I cannot live on a ventilator. The rest of my life. I do not want this. I've done it for 2 years. I am not living this way. and people were horrified, would have nothing to do with taking this man off of ventilator, but had no issues, taking a woman who couldn't speak off of ventilator because of her age. Now she couldn't tell you if she wanted to die or not. But that was comfortable. But taking a 36-year-old, who could talk and make a conscious choice, was horrifying and I think that for me just summed up the way that we go, that we look at death and handle death, and think we somehow have some obligation to keep people alive or never, or the pain of discussing it needs to be prolonged. I don't know if it's life that needs to be prolonged. I don't. I don't know what that is, but it may be death in this culture is a failure. And it's framed that way in some of the words like lost the battle. Yep, yep, for sure. So, it's we do it like it's war.
Jerry Hoepner: How do we open that dialogue, Tania? I know you and I talked about the PLISIT model, and that as an opening for conversations. But what do you think all of you, in terms of how do we open that dialogue?
Nancy Petersen: I always. I'll open it with funerals. I don't know why it works sometimes, but funerals are a practical money situation. So, if you talk about funerals in a joking way, or in a kind of a, you know. By the way, we're all here at Thanksgiving. We've never talked about this. What do you want or not want? And if you can start a conversation with something that is less than so, you're going to die sometime. Why don't we talk about that instead, it's when you die. What do you want it to look like? And it feels less threatening. I think in many cases and it can start a conversation in a non, and I know it sounds weird to say funnels are non-threatening, but sort of a practical situation that people are always told to take care of their business before they need it. So, I don't know. I think sometimes jokes or humor, or practicality sometimes are less off putting.
Tania Riske: Well, and for me as a clinician. I have to be in a certain place of having built a certain amount of report before we can jump into that, you know. I don't have the sort of built in, automatic family dynamics that you might when you sit down at that Thanksgiving dinner. So, having some rapport, and really knowing a little bit more about the patient or and or their family and the relationships. But for me, I it really requires me to consciously be bold and not use the euphemisms, not just avoid and skirt around, but to really be bold and open. That conversation of first of all, acknowledging that in the case of a degenerative condition, that that is where we are heading, we are ultimately heading toward death and opening that door for conversation, about losses that are anticipated. And whether it's changes in what a person can and can't do physically, cognition, health, opening the door to those conversations and re, and making sure that I revisit that and going back to that PLISIT model where really sort of the first step in that is granting that permission to have the conversations. Maybe it's not today. Maybe it's not in a month. And frankly, with some families and patients, maybe it's never but always being intentional about opening the door and keeping the door open. How does that resonate, CeCelia? When you hear these sides of the conversations where we're thinking about it from that provider standpoint. And you are. You've had the lived experience. How does what we're saying resonate with you.
CeCelia: Right. I wonder if the idea of loss isn't just dying in death. In my experience, it was a lot of different loss for 9 years. So maybe framing the conversation around loss for Wayne's loss of speech and loss of cognition and loss of toiling abilities and loss of hygiene skills and how that evolved it's not just dying as loss, but it's a loss of everything over 10 years, and maybe I don't know. Maybe reframing that loss and not in not in terms of denial or avoidance. I still have issue with labeling people in that way. I don't think that fosters an acceptance. So, in addition to that, maybe reframing loss might be I think, was important to me.
Nancy Petersen: And I absolutely please don't think that I was speaking to you. I was speaking in general about the denial I, or avoidance of death, as a rule, to someone who is not in a situation of actively managing that or even thinking about it. I was talking in general to people that are out getting freebies off my table at an exhibit hall who don't even wanna start the conversation because it's something that isn't happening to them. The other thing I want to say to you is, there are other losses that you're experiencing, that I talk. I've always talked about the loss of the husband that you had until he got sick, the loss of the ability to travel with him, the loss of conversations that you would have. So it's not just the losses of him, which, of course, you worried for him and those losses, but also to understand what you were losing, what everyone was losing. And I say this to people sometimes when I say grief can happen any time and grief is something that we should look at. We're going through all the time. If you lose a job if you lose, you know your home, you know. I just moved from my big house to this small house that my son could navigate, and there was loss involved in that. Not being a choice I wanted to make, and that being forced upon us, and that being the house, we hope to be in forever. So, people experience losses constantly and I don't think we give that enough thought. We're in America. We just seem to go and go and go. We're on the move forward wherever that is, and we don't. Maybe part of this is that we don't. We're not introspective all the time about loss and about, you know, when I talk to family sometimes, it's they haven't even sort of. They haven't put towards the losses that they've experienced. And those are losses, you know. That's not. Did you lose him when they died? But those are true losses. I once had to do a thing. I was gonna volunteer with Aids patients, and they gave us all these slips of paper with, we had to write down the 5 most important, you know who's the most important person in your life. What's your favorite hobby? And then they would make us take these pieces of paper and choose which piece of paper to remove from our pile, and that was gut wrenching, and all I was doing was wading up a piece of paper, so that just that activity was very hard, and made it so clear what losing parts of your life to a disease or to a situation could cause so please don't believe that I believe people that are in that situation are in denial in that respect, or that we should use that as a negative talk just that I think we live in death denial as a culture with the way we kind of act like. It's not a part of you know. We can show all kinds of medicine on TV. But if you put anything on there about a funeral or someone dying, people push back hard. We just have a problem with it.
Jerry Hoepner: Yeah, so kind of related to your example of people walking around your booth to not get to not catch Hospice. Yeah. But the other thing I'm thinking about. Nancy, as you were describing. Some of those losses. I don't think people always recognize them as losses. Just to have a conversation about changes. That you've experienced like. For example, when you said the loss of you know your larger home for a smaller home that your son could navigate. I think some people would recognize that as a change until they really think about. I loved that old house I mean, I loved it, and just opening up that dialogue might be an important piece of that conversation, too.
Tania Riske: A conversation that I'm having more often is conversations with patients and families, too, about loss of identity. And I think that ties into the same idea where, if your identity was, you know, I'm gonna I'm gonna live in this house with my healthy family. And you know, we're gonna do these activities. And we're gonna take these trips and and we're going to. And this is who I am and the vision that I have when that vision changes. I think there's a real loss of who am I? What does my future look like? What does this mean? And that I think that loss of identity is a really big, a really big deal, too, that we really need to support.
Nancy Petersen: And we see a lot of men. And it's not only men, but we see a lot of men who, if they can't go back to their job. They've identified themselves as the breadwinner, or the a lawyer, or whatever it might be, and just that loss is almost. I mean, they think about it as a kind of death that they suddenly, you know nobody wants to be a burden, so everyone thinks of themselves as that. But when they lose their ability to do the thing that that made them who they were in their mind. We don't talk a lot about that we talk about. Well wouldn't get you. So, security disability. And, you know, like, money's gonna solve that problem. And now you can stay at home and watch TV. You don't like and not go golf anymore with your friends, and probably not be a part of those conversations that all your guys are having at poker, because you're not going anymore. Because you have. You know, you have aphasia. So you are absolutely right. And that's why I think that and why I was big about everybody who has a part of their life, who has a piece of that person, whether it's in rehab. And they're doing speech, pathology, or PT, and they're talking about it should be comfortable with having those harder discussions than you know. How about them chiefs, or whatever it is that you can have. Once well, here, you can have it a lot we win, but you know. But you know what I mean. Like you can. You need to have a conversation that gets a little deeper. Maybe you should feel comfortable having that come. Maybe you could do somebody more good if you were comfortable with that.
Jerry Hoepner: Yeah. And I'm still glad you broaden the conversation to thinking about loss, not just as death and bereavement, but thinking about the application to everyone that we're working with in terms of, you know, people living with aphasia regardless of whether that's a degenerative aphasia or whether that is a stroke-based aphasia. There's a tremendous amount of loss and change, and even being able to have a conversation about that change, to be able to say those changes sound a lot like loss. I think that's an important piece of this conversation, too.
Tania Riske: Over the years that I knew Wayne and CeCelia. I really had this, I think it was a very unique and awesome experience of seeing a partnership that works so well together to support identity. Even as Wayne went through changes with his primary, progressive aphasia. How they worked together and brought me into those conversations about, how do we continue to support Wayne, but also to support CeCelia as a partner and caregiver? And I think that's a part of a conversation that very often is overlooked by providers kind of circling back to when we first started this conversation. But about how do we support people as they're going through losses that affect their identity, that affect their physical health, their emotional health, their cognitive health? How do we support families, patients, loved ones. And I had the pleasure of just really seeing a phenomenal example of that. And that's not a support system that everyone has. How do we facilitate that.
Jerry Hoepner: To me it feels like. It's not a support system until you open that door. Go ahead, CeCelia.
CeCelia: I was just listening. Thank you, Tania.
Jerry Hoepner: Gotcha, I mean, I feel like in this situation. Tania. You made it possible for some of those conversations to be initiated. I'd be interested in CeCelia's perspective about what it took, what kinds of doors were open for that conversation? Was that something that was initiated from only Tania? Or was it initiated in both directions? What are your thoughts on that.
CeCelia: It certainly was Tania and per the other speech therapy colleagues, and the aphasia community and some friends and some family. I think one question that I heard that was or comment, and I heard it several times over the course of the years was being asked like, what are you experiencing, or what are you hearing other people say? That's painful for you and sort of letting that guide the conversation when people said such and such that was really painful. But when people said other things that you might think would be horrible, it wasn't horrible at all. So maybe kind of looking at, or listening, or asking for, What are people telling you? That's painful? I don't know if that sort of addresses your question, Jerry.
Jerry Hoepner: Yeah, I think so in terms of initiating those conversations about. you know what's happening in your world. And how are you responding to that it actually made me wonder to what extent was Wayne a part of those conversations. To what extent was he involved in that process, especially early on.
CeCelia: Well, Wayne wasn't a real chatty guy, but of course, in my heart of hearts I I you know, being married, and so on for decades. I knew what was painful for him, even though he wasn't able to say it, and I knew what was supportive to him. So, from Wayne's perspective, he would never have. It just wasn't part of him to say, well, this is really a crack of crap sort of a thing, you know. He just wouldn't say that so it hang out.
Jerry Hoepner: Was it helpful for him to be there when you were having these conversations with Tania.
CeCelia: Oh, absolutely just because of the inclusion of the 3 of us you know, and Tania was so skilled in in pulling out a picture off his iPad or whatever, and it wasn't just a picture of him golfing, but it was digging deeper around his golfing, for example. So, it was a springboard for conversation. That Tania would just do over and over and over again, and of course Wayne saw it as golfing, and the fact that oh, he wasn't really golfing 18 holes anymore. And he wasn't, you know, golfing a 92 or an 88, or whatever. And Tania's questions about so what's a birdie, and what's a bogey? And you know Wayne wanted to be helpful at all that. But of course it opened up a whole door of conversation from Tania's professional position in what was happening with his identity. It ends, it.
Jerry Hoepner: Go ahead, Tania.
Tania Riske: I was gonna say, thank you for really highlighting that, CeCelia, because that was. I guess how I learned so much about Wayne. So, I felt like I could help to better support his identity. So when I, when we were talking about pictures, that was my favorite, because I could see such a peek into what? Who he was? Which was so much better than if I would have brought in, you know, some pre created or commercial therapy products that told me really nothing about Wayne. So that was really something that was just such a great tool. But tool is such an inadequate word for that. It was just. It worked so well for me to learn about Wayne and for Wayne to be able to school me a little bit, too. Sometimes.
CeCelia: And it's just an example, I think, of starting where the person in the family are at in in the pictures. Of course, that was, as you said, tool, or whatever it's called. It was like this is who Wayne is, and this is his life. It's like what's painful for him and for me and for us together. So, it was. It was the foundation that guided the discussion, and not something you know, sort of external, that that was sort of put upon us. If you will.
Jerry Hoepner: Maybe this is a good time. I jotted a question down as we were talking from a life participation approach to aphasia. Why is it so important that people have this conversation, or that this is a part of our conversations about loss and grief and death and dying? Why is that such an important piece of the life participation approach.
CeCelia: I don't know 1 one aspect that I thought about when you asked that, Jerry. It's of course going through the process, and the process never ends of dying and death. It never ends but it's so. It's sort of the day to day, but it's also sort of the memory of that. Now, when I look back 8 months later, I I those are the good things that I have. Those are the times in the bottle that I will keep forever and ever and ever. So, it's not just. Oh! Wayne was discharged. Wayne died on August 20, fifth, etc., etc. It's like, Oh, that that's been my life. So, it's that time in a bottle idea of, you know, one can go with Jim Croce idea.
Jerry Hoepner: Yeah. And I think that alone is powerful, that I think some clinicians might feel like, Oh, don't even touch that time in a bottle, because that's sad when you really frame that time in a bottle as something really positive and meaningful for you. And I think that's a really good reframe on the entire lens, of talking about loss and death, and dying.
Tania Riske: I feel like so much of that life participation model is also about honoring identity, honoring wishes. Honoring people as individuals, not as impaired patients who we must fix. But instead, as people with lives and dreams, and some of those dreams have just been shattered or maybe they were shattered years ago. But yet they are. These are people with identities who matter as individuals and really honoring that. And I think that's another reason these conversations are important to honor the fact that yes, there will be death, and we want to do kind of right by you and by your family and loved ones with how we approach that and also recognizing these losses that we've been talking about, now honoring those and not just throwing them away, but doing our best to continue to really celebrate honor, embrace individuals and grief anticipating grief. Bosses is all part of that.
Nancy Petersen: So, I just have a question because you're typically talking about people who have a progressive situation so that it.
Tania Riske: That's true. That's where my lens is a little bit focused right now. But yeah.
Nancy Petersen: And so that would be an I don't want to say obvious, but a wise choice to add to those conversations. I wonder if it, I think it needs to be a conversation that's in any in any sort of situation where there has been loss. Even if it's someone who's trying to rehabilitate from a stroke like we talked about, or someone who doesn't have the path of degenerative situations. But maybe that whole thing about how we have a difficult time with loss or recognizing loss would be beneficial, because we would be in a better position when other losses occurred. In other words, that it would make believing, understanding, discussing, recognizing loss in many situations would help us. What happened with what happens when those final losses start to occur. Because I just don't think we look at Change. We try to put a positive spin on change, and there's nothing wrong with coming up with the good reasons for that change, but that we don't recognize the loss that comes with those changes, you know. Yay, Daddy got a new job in a new city, and we're leaving. And then you hear we're having trouble with the teenager, because you know, I know it's hard for her, and we're changing schools and all of this. But if you don't then recognize per loss, even if to you it seems like a lesser concern than the other things that are going on that you're telling people that those losses don't count, or that that emotion isn't important and I'm just thinking about our speech pathologists and the opportunities that they have, or that opportunities any speech pathologist would have after an event or a health event to make to make it more than just, you know. Let's talk about Bill, and how you know our story today, or whatever it is that they're doing. That's sort of the more traditional speech pathology like you mentioned Tania, the typical structured speech pathology session that they would have.
Tania Riske: Nancy, that makes me so happy that you kind of bring that up, because that's something. CeCelia and I have had extensive conversations about and that I get really all worked up and excited about is really the role of speech pathologists in counseling in general, you know. Yeah, maybe it is more at times focused on grief. Maybe it's identity other times. But just that whole idea of there is lots and I think speech pathologists have a huge role in acknowledging that supporting that you know, there's lots of conversation going on right now about what kind of education do we need to provide for a speech pathologist to better enable them to counsel and counsel well, and still staying within our scope of practice. Of course, our very respectful boundaries.
Nancy Petersen: Absolutely. I can tell you, I can tell you there's very little even in doctor schooling. Oh, I believe they don't get any. They just nobody gets this. So, I love Jerry's been doing and what you're doing. It's just if you have an hour with a person who's coming out of some sort of crisis or medical situation. Why not use it in a way that's beneficial in a larger scope than just working on your t's, or whatever it might be.
Jerry Hoepner: Yeah. And this has just been such a fantastic conversation. And I think you've done a really nice job of tying things together in terms of the life participation approach. I mean, if I just take a step back and kind of summarize our conversation, part of what makes an effective interaction is not avoiding those difficult conversations, but leaning into them, asking the questions, creating that safe space, as Tania said, for the conversation, giving permission to discuss those tricky topics. And then just actively listening, beginning where the family and that that individual are at. So, I hopefully, I've some summarized those things. Well, any missing elements that we should discuss before we bring this great conversation to a close.
Nancy Petersen: I just appreciate you guys, I don't know the 3 of you that well, and I'm trying not to. I get very excited. And on my soapbox about things that I've witnessed, and things I think we could do better. So, I just want to apologize if I don't know the kind of the framework. But I certainly learned a lot and appreciate very much what you all shared today. So, thank you for that.
Tania Riske: I really enjoyed having conversation about things that are so often really kind of dismissed, or nobody wants to talk about that, Nancy. I really appreciated your frankness. I you know your honesty, and just putting out there the things that we tend to be so uncomfortable about. And I think you're so right that these conversations need to happen. And they need to happen outside of the traditional of this context that we're talking about where people are looking down the barrel at loss but also they need to happen at the Thanksgiving table. And now those they just those conversations are so valuable. But yet we do such a stellar job at not having them. So. Thanks for talking about that.
Nancy Petersen: No problem. Thank you.
Tania Riske: And, CeCelia, I'm always so appreciative and grateful for your willingness to be so vulnerable and to really put so much out there about your lived experience.
CeCelia: Thank you.
Jerry Hoepner: Well, I want to thank you all for having this conversation. It feels like we could talk for another day, but we'll bring it to a close, for now. Thank you all, and I look forward to more conversations in the future.
Tania Riske: Thanks. Jerry.
Nancy Petersen: Bye, Jerry.
Jerry Hoepner:
On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.
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Dr. Janet Patterson: Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about aphasia, the LPAA model, and aphasia programs that follow this model. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Conversations Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for our episode that will feature Robin Pollens, in which you will hear about the transformative power of mentoring. These Show Notes accompany the conversation with Robin but are not a verbatim transcript.
In this episode you will hear about:
1. the presentation of the Aphasia Access, Sandra O. Glista Excellence in Mentoring award to Robin Pollens,
2. stories about mentoring from Robin’s career as a speech-language pathologist, and
3. the power of a mentoring relationship to affect the relationship with people whom you mentor, from whom you receive mentoring, and with whom you share mentoring opportunities.
I am delighted to be speaking with my dear friend and longtime LPAA colleague, Robin Pollens. Robin is an ASHA certified speech language pathologist and held the positions of adjunct assistant professor in the Department of Speech, Language and Hearing Sciences at Western Michigan University, and clinical supervisor and coordinator in the Aphasia Communication Enhancement program. She also provided clinical speech-language pathology services through home health, and skilled nursing outpatient clinics.
In addition to her focus on LPAA, Robin is passionate about graduate education in speech-language pathology, palliative care, interprofessional collaboration and ethics, and has written and lectured nationally and internationally on these topics.
In 2023 Robin was awarded the Sandra O. Glista Excellence in Mentoring award from Aphasia Access. 2023 marks the inaugural award given to both Robin and Leora Cherney from the Shirley Ryan Ability Lab in Chicago. The “Sandy” is awarded by Aphasia Access and recognizes an exceptional mentor who has demonstrated unwavering commitment, unparalleled guidance, and profound impact on the professional and personal development of others working in the aphasia community. The award is named in honor of Sandy Glista, one of the founders of Aphasia Access, and is a testament to her enduring legacy, and a reminder of the transformative power of mentorship.
Welcome Robin, to this edition of Aphasia Access conversations.
Ms. Robin Pollens: Janet, thank you. Thank you so much for all that intro, and it's nice to be here to talk with you today. I want to also right now, thank Aphasia Access for this honor. It was especially meaningful, towards the end of my career, to receive a mentorship award and to hope there's something that I did, or I said, or I wrote over the years that was meaningful to somebody else. I also appreciate that I'm sharing this inaugural award with a wonderful friend, Leora Cherney, and that this award is named for my close friend and collaborative partner, Sandra Glista. It's a real honor to have received it and an honor to talk with you today, Janet.
Janet: The feeling is mutual about talking with you, Robin, and the honor is certainly well deserved. Robin, as I mentioned earlier, you were honored with the Sandra O. Glista Excellence in Mentoring award. This award recognizes your commitment to mentoring individuals who are part of the aphasia community, including clinicians, researchers, persons with aphasia, and their care partners, students and others. Through Sandy Glista and this award, we are reminded of the transformative power of mentoring.
Robin, how do you envision the value of mentoring to individuals and to the Aphasia community?
Robin: When I received this award, it set me on the road to reminiscence. I remember being in, I think, undergrad, studying Speech and Hearing Sciences and I had not yet done any clinical work. I had the opportunity to sit and observe a grad student doing an aphasia assessment with a patient. I was sitting behind this two-way mirror and I'm watching, and my mind is going, “okay, she holds up this card; and then she writes something down; and then she has someone point.” That's what my mind was doing. Sitting behind the two-way mirror with me happened to be a visiting professor from Australia named Anne. She turned to me and said, “Look at all of that empathy”. And I went, in my mind, “Empathy, what does that have to do with it?” Then I looked through the mirror, and I saw that this grad student was talking softly and looking kindly in her eyes, and kind of patting the client when she got frustrated. I thought, “Oh, I guess that's part of this.” So I'm thankful for her (Anne) and I feel like she was my first mentor. She only said one sentence to me, but it set me on a path for what it means to be an SLP. I know that recently, like in the last five years, there's been more discussion in our field about the importance of counseling, and mental health and people with aphasia. When I would be watching a grad student doing therapy, and I'm supervising, sometimes I would see them having what I would call a counseling moment. I would make sure to let them know later, saying perhaps, “I saw when the patient was frustrated, you stopped the task and you talked with them kindly. They told you about some things that were happening, and you gave an empathic comment.” This is the way that I think about mentoring, that it's a pathway to learning or growth that comes out of your own experience, and then it goes on to others and recreates. I can go on and on with stories.
Janet: Please do tell stories, Robin, because I'm fascinated by stories. I have another question though, Robin, as you continue to tell me your stories, you've led right into the question that's on my mind. People may think of mentoring as one way, such as the experience that you had sitting behind the mirror and watching the graduate student. I see mentoring as an interactive relationship that goes multiple ways. I would love to hear more of your stories and learn about your thoughts about interactive mentorship. Does that make sense to you?
Robin: Yes, I do like that framework that you just said, Janet. And when I knew I was going to be doing this discussion with you today, of course, I went online, and I looked up mentoring to see what kind of definitions I might find. I actually found a website that I liked; it was Art of Mentoring. The definition for mentor they used was a coach, a connector, or even a challenger to help their mentees reach their full potential. The mentee will lead the relationship, inviting the mentor into their own inner dialogue to assist in working through, and I really liked that. I think that's ideally how the relationship can work. So, for example, when I was supervising the students in the ACE program, when it got to be in the middle of the semester, we would have a midterm conference and I would always say, “Tell me about your goals for yourself for the rest of this semester, how would you like me to help you?” The answers were so varied, there were some people that were very focused on the clinical learning tasks, they might say something like, I'm having trouble being in the conversation and keeping track of data, or this patient's talking so much, I don't know how to navigate the session to get everyone involved. So, there were clinical skills. Whereas there were other people that would say something like, I get so anxious before the session, I'm so nervous, it takes me a while after I met it to really be able to focus on what's happening. Those are two very different kinds of goals, and I wouldn't have known as their supervisor and mentor for that situation if I hadn't asked, and if they hadn't, let me know. So, I do think that that's important. I also think sometimes we have to seek out our own mentors; that's part of the relationship. In the beginning of my career when I was in my clinical fellowship year, I didn't have one of these strong clinical fellowship, amazing experiences that some people did, I was in a public school, and I had someone who was my supervisor. During that time, I was able to get a position in a different city, working in the hospitals, and another supervisor agreed to keep following me as the supervisor. In the hospital, I had some new patients that had had injuries, and I wasn't sure what to do. My supervisor didn't know anything about that, and I ended up going to a conference in Braintree, Massachusetts, and they were talking about this new thing called Rancho Los Amigos Scale, and I learned about it and brought it back. Sometimes throughout our careers, I think you need to actively seek out a mentor. I think I remember that Aphasia Access started a program where if you wanted to be a mentor, or you have a mentor, you can let them know; I think that's great, because there's always things that go on as your career continues that you may want to get some guidance for.
Janet: What I'm hearing you say, Robin, if I can paraphrase your words, is as an individual, a good thing is for one to be open to mentoring opportunities, whether you provide them or acknowledge them, when you see a student or a colleague performing in an empathetic manner, or for your own self seeking out someone to give you assistance. The mentoring could be a large role, such as in a CFY, or a lengthy one such as a two- or three-year relationship, or it could be a very short-term kind of mentorship. This seems to me to be what you're saying, make yourself open to learning and interacting with all sorts of people, because they can have an influence on your life, and presumably, you on theirs as well.
Robin: You summarized that great Janet. Yes, and I know that when I was working in home care quite a long time ago, I remember feeling in awe of the family members, the amount of care and the total concern, and they modified their life to care for their loved one. All of a sudden, I remember that feeling, and then fast forward two decades later, when some of my family members had illness, and I was in that role. I was drawing upon what I learned from them, which in turn, I share with our families of the people with aphasia when they're having medical situations. So hopefully, we're just all doing this for each other, throughout our lives.
Janet: What's the phrase “together, we're more powerful”, that's not it exactly, but our thinking together and the little pieces of information about mentorship or actions about mentorship, that you can recall from 15 or 20 years ago, that can help you today, are just as important as the word someone says to you this afternoon, about how you can be a better clinician, or you can give guidance to someone who is seeking it from you. Exactly.
Robin, in your position at Western Michigan University, I know you have mentored numerous students, and we could probably talk for months or years about wonderful stories. Some of them, most of them, I'm sure are successful, but there probably were a few that were less successful mentorship relationships. I know that you've mentored students, what I'm interested in learning from you is have you also mentored persons with aphasia or their care partners?
Robin: Yes, and I think there are different ways to mentor somebody with aphasia. I think the piece of it I'm going to pick up on has to do with helping them express their identity, helping them to reach their level. And again, I think for me, the roots of it came actually long before I knew about Life Participation Approach to Aphasia, it wasn't really articulated yet. I remember working in home care with a woman in her 40s. She had her stroke, and she had severe aphasia. But also, all of a sudden, she could no longer work as a crossing guard. That was her work, as a crossing guard for the elementary school. She also was no longer part of her caring circle at church, she was the one that greeted people, and sent get-well cards. I think that one really struck me because I was also on the caring circle at my temple. So, we ended up in therapy focusing on reading and writing, but in the context of being able to write sympathy or get-well cards. She made a dictionary of phrases you could write and things like that. So, fast forward to being in the ACE program, which was created by myself and Sandra Glista, to be a place where goals were addressed, not only the impairment level, but also the participation level, and there's certainly countless examples there I can think of, even from way back in the beginning, because it's in the article that we wrote. There was an organization in our city called Senior Corps, and it's actually in many states still. We trained some of the volunteers to communicate with people with aphasia, and then matched them with some of our people with something they wanted to do. So, one of the people ended up being, with his conversation partner, part of a bowling league, an accessible bowling league. He was young, he'd always been in sports, and he was just sitting home so that was his identity. Another person was matched with a woman who ended up going into a first-grade art class in elementary school once a week and helping out in that art program with her conversation partner. So, these were things that we started saying, we're working on communication, but we're also in some way guiding them towards a meaningful and participatory life. So that's one way, I hope that I've been a mentor for some people with aphasia.
Janet: I bet you have been a mentor for a lot of people with aphasia, because I can just visualize you thinking, and tapping into all the information from your former mentors, as you try to find ways to help an individual with aphasia, and his or her care partner or friend, take that step to being able to do whatever it is that they'd like to do, as well as they can possibly do it. I'm glad that you've had all these mentoring opportunities, and I think you're a leader in this field.
Robin: Thank you, Janet. I'd also say I think a way to be a mentor with someone with aphasia is also just having an authentic relationship with them, when their communication changes so much and people don't know how to communicate with them, and they don't know how to communicate with others. Being someone that they know they can talk with, they can relate with and laugh with, I think that in and of itself is a valuable way for interacting with somebody who has a sudden change in their communication.
Janet: You're talking about accepting someone for who they are, meeting them where they are, and together, you have a relationship that is built on trust, so that that individual would be more willing to accept from you, ideas that you suggest. They may be wacky ideas at the moment, but they certainly work in the long run. That relationship helps you both accept information from each other. I'm really curious, you've told us several stories about mentoring, and we'd love to hear many, many more. Can you think of a favorite mentoring experience you've had in some part of your career? Tell us one about one of those.
Robin: Sure, I'll name the one that I just got to go through. That was mentoring the next coordinator of the Aphasia communication Enhancement Program, which is Alison Mezcal. I had the great pleasure to stay for a semester while she was there, and we were able to do all of the coordinating. I already knew that she was a great clinician, she already knew the ACE program, she had been our student 10 years before. But the coordination piece, which is scheduling, and contacting people and planning, and all that would be new. So, we got to do it together over the semester and that was so satisfying to be able to do that. I also literally cleaned out the office and all the files and all the things so that it was ready for the next person. I know many people don't get to leave their position with the opportunity to do that, to directly mentor the next person, and it was a great pleasure.
Janet, on the mentoring website, they talked about their logo, and it was two geese flying in, here's what they said, “The geese at the front of the flock improve the aerodynamics to make it easier for the followers to fly; the geese at the back honk to encourage the front geese to keep pushing forward.” And they are constantly shifting position, meaning the mentor could be leading from behind or in front, and sometimes just flying alongside. And that's what I had the opportunity to do with Allison. So that was a great pleasure.
Janet: That was a great story, Robin. I just imagine the warmth it brought to your heart as you watch this living thing that you and Sandy created many years ago, move on to the next generation. But you know, I thought about something else, too, that this is part of, I think, what might be thoughts that a mentor has to consider. So, you've invested a lot in your ACE program, quite a bit over the years, and your heart and soul are in that, and you have mentored the next generation beautifully. But now you have to step aside. The next generation may have different ideas or may take it in a slightly different way, or may do things that you never even thought about. So, part of what a mentor has to do I would imagine, is also take a deep breath and know that you've done the best job you can. But then step aside and maybe your job now is to be at the back of that flock of geese and keep honking as the program moves forward under a new leader and a new director.
Robin: Excellent. Yes, and that's very fun. I have great confidence and hope, and in a couple of weeks Alison and I are meeting for coffee, and I want to sit back and just hear all about the things that she's creating.
Janet: That's wonderful. You are indeed a wonderful mentor, Robin, you've been a great mentor to me over the years, sometimes you knew it, sometimes you didn't, as a result of the conversations we've had, and through the different projects that we've done over the years.
Let me turn to a slightly different topic now. We've mentioned this a couple of times already, that for many years you worked with Sandy Glista, who is a dear friend to both of us. I believe that being honored through this award, receiving the “Sandy”, it must bring warm thoughts of your days working together. Please tell our listeners about how Sandy's friendship and collegiality have influenced you during your career.
Robin: I would say in the beginning, which would be the late 1990s, I'd say Sandy initially was a mentor, the kind of mentor that many people spoke about. In this regard, she was a connector, she connected people together. Well, she connected me to you, Janet, when you and myself and Ellen and Glenn did a project years ago on Cybersafety for people with aphasia.
I was doing homecare and Sandy was working on a project with keeping elders communicating. She invited me to be involved in this project and start having some Western students intern with me. Then she invited me to do a presentation on a topic she was starting out investigating, interprofessional education, which was a new thing. We were in a college, and we had OT and social work and all the different disciplines together. They did a presentation, I brought in my team, my home care, OT PT, social work team, and we proudly presented a case. It was after that, that she was going to be going on sabbatical and she asked me if I would take her place in working with people with aphasia at Western, and that's when I began actually working at Western, in 2002. Once she came back, we started talking, and creating and planning this new version of an aphasia program and for a couple of decades, we were collaborative partners. We would add to each other, fit to each other, enjoy being together, and have a wonderful creative experience, creating these ideas that we had and seeing them happen. If we did anything such as write something or present something, it was always Sandy Glista and Robin Pollens, or Robin Pollens and Sandy Glista, whether they were even present or not, because the ideas germinated from both of us. So, if you ever have the opportunity to have a work relationship like that, it's a real gift.
Janet: Our listeners can hear, I hope, the joy in your voice, as you're talking about that relationship you had with Sandy. I know that was a very special relationship for the two of you. I can see because I'm looking at your face right now, I can see the joy in your face. Recalling the close times and close work that you and Sandy had together, I'm sure that there were some disagreements or seeing things from different perspectives, but your last statement saying that it was a wonderful working relationship and you you'd like to see everyone have that kind of close, creative relationship, is admirable. So, thank you for that insight. Robin.
I'm also wondering who were some of the mentors that you and Sandy drew upon?
Robin: When Sandy went on sabbatical, she visited national and international aphasia centers, and she brought back the inspiration and the sense of community that she experienced there. I was reading the World Health Organization ICF with its impairment, activity, and participation parameters, and I could envision how we could use this concept to create goals for clients, and to create participation groups where clients could work on their impairment-based goals in the context of an activity of choice. Sandy and I studied relationship centered care, which came out of the Fetzer Institute here in Kalamazoo, and we envisioned a program where family members or care partners were part of the mission of a program. Finally, in our collaboration, we created a sequential way to educate the students through the semester to be able to provide this type of SLP treatment. On the first page of the article we published in 2007, you'll see a long list of people who inspired us. Those were ACE program mentors and as ACE continued, Elizabeth Nadler, Marie Koss-Ryan and Suma Devanga added their creativity supervisors. And I would add that once Aphasia Access was formed, there were many people in Aphasia Access, who became our collaborative mentors. So, thank you to everyone.
Janet: Robin, you said something about interprofessional education and interprofessional practice, and it kind of got lost in a sentence, and I'd like to circle back to that and acknowledge that you and Sandy were visionaries in this area. Nobody else was talking about interprofessional practice, or publishing about it, or making it happen. You and Sandy were at the forefront of that. I remember those papers that you wrote, talking about the value that each one of the rehab professionals could bring to the treatment of the patient and how they we can all reinforce the goals for the patient, the various goals. So, we all owe you a debt of thanks for that, as well.
Robin: I didn't realize that was that different. I just realized that we had the opportunity since we were at Western and there were the other professionals there, that each semester, we ended up creatively finding ways to coordinate with OT, or bring in a social worker or whatever it was. I have enjoyed watching the growth of this area of interprofessional over the last years and seeing how it's appreciated.
Janet: I think it's very important. A previous Aphasia Access Podcast, #84, was with Mary Purdy, who talked about interprofessional collaboration and related a specific story where she and a physical therapist work together to achieve the particular goal of one of their clients. Another podcast, #78, with Michelle Gravier, Albert Mendoza, and Jennifer Sherwood described an interprofessional exercise program. I'm so glad that there is a greater appreciation for interprofessional education and interprofessional practice these days.
So, Robin, as we bring this conversation to a close with thoughts, or as I like to call them Monday Morning Practices, do you have ideas that you could share with our listeners, things that they might either think about in the long term, or that they might do on Monday morning when they see their clients?
Robin: Well, I almost feel teary as I'm answering this, but I'm going to work through this teariness. I'm thinking about beginnings. And I'm thinking about endings. And so, I'm thinking about making sure that in the beginning, if someone's in the hospital and has new stroke or new aphasia, whatever it is, that you are giving them hope, as described as important in the article way back by Avent, Glista and others, and I can't talk without giving a story, Janet.
I’m remembering in homecare, seeing a new patient with severe aphasia, not much talking. The wife left the room while I was in the session, and I noticed a deer’s head on the wall. So, I took out a piece of paper and I wrote down some written word choices, you know, baking, gardening, hunting, whatever. I said, “Tell me, I want to learn about you.” And he pointed to hunting, so we ended up having the whole conversation using supportive communication strategies and written words. At the end of the almost hour, his wife came in the room, and I said to her, “Oh, I just was hearing about the time that he and his brothers went up hunting up by Lake Michigan, and they had that rainstorm, and then the roof was leaking.” She looked at me and said, “How did he tell you that?” So, I took out the piece of paper, and I showed her our conversation, basically, with words and drawings. He had already gone through acute care, and inpatient rehab so I said to her, “Didn't anybody show you this along the way?” And she said, “No.” So that's one of the messages that I often like to express - the importance in the beginning of giving the family a method to be able to communicate because that's a way of giving hope. I can also quote another colleague of mine, Marie Koss-Ryan, who did some acute care pretty recently: same thing - she went in the room, new stroke, new severe aphasia. He was trying to read his menu to order breakfast and couldn't do it. So, she took out her iPad, pulled up a page of juices, and said,” What kind of juice do you like?” and he pointed to tomato juice. A little while later the tray came and then his wife came for the day visit and she saw the tomato juice, and she burst into tears? Marie asked what was wrong, and she said, “How did somebody know he drinks tomato juice every morning for breakfast.” She took out her iPad and showed her how you can pull up pictures. To me that's giving hope through a way to communicate. So that's the piece from the beginning. And I can't help but mention just briefly, to also remember if you are working in palliative care and end of life care, to also show up as a speech-language pathologist that can help people to be able to communicate as best as they can, even if it is at the end of their life.
Janet: Those are, are very important points, I think, to start us off to remember the power of communication. And then also to know that there are lots of messages people wish to convey towards the end of their lives. How can we help them convey those messages?
Robin, this has been an amazing conversation. And I know that you and I will have many more opportunities to talk to each other. I just wish we had many more days right now to listen to the stories and share the thinking and the insights and the bits of mentorship we have received from each other and from people in our clinical worlds. So, thank you so much for speaking with me today. I am proud to call you my friend and my colleague, and again, congratulations on receiving the Sandra O. Glista Excellence in Mentoring award. I know Robin, that when I asked you to be interviewed for this podcast, you were initially reluctant, as is your style. I'm so glad that you finally agreed because the messages that I'm hearing in our chat today, they're far beyond you and me. They're about the power, the transformative power, of mentoring, no matter who you are, or who you mentor. So, I thank you, and on behalf of Aphasia Access, I want you to know how humbled I am by your long-standing commitment to mentoring. I believe that even though you are retired from Western Michigan University, you have many future mentees that will also be humbled by your long-standing commitment to aphasia, to people with aphasia, to their care partners, and to mentoring.
Robin: Thank you, Janet. Thank you very much. And I guess I will say this ended up being a gift that you gave me to be able to do this. I mean, we should all do it for each other to give them a chance to reminisce and tell their story and get perspective and life. So, thank you.
Janet: You are more than welcome, Robin. I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show please see our Show Notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at [email protected]. For Aphasia Access Conversations, and again thanking you Robin Pollens, I am Janet Patterson and I thank you all for your ongoing support of Aphasia Access.
To engage in further conversation about mentoring, Robin can be reached at [email protected]
Reference List
APPENDIX B: Rancho Los Amigos Scale-Revised. (2011). Continuum (Minneapolis, Minn.), 17(3 Neurorehabilitation), 646–648. https://doi.org/10.1212/01.CON.0000399079.30556.03
Avent, J., Glista, S., Wallace, S., Jackson, J., Nishioka, J., & Yip, W. (2005). Family information needs about aphasia. Aphasiology, 19(3–5), 365–375. https://doi.org/10.1080/02687030444000813
Glista, S.O. & Pollens, R.D. (2007). Educating clinicians for meaningful, relevant, and purposeful aphasia group therapy. Topics in Language Disorders 27(4), 351-371. https://doi.org/10.1097/01.TLD.0000299889.62358.6f
Pollens R. (2003). Home care. Hom Healthcare Nurse, 21(5), 348. https://doi.org/10.1097/00004045-200305000-00015
Pollens, R.D. (2020). Facilitating client ability to communicate in palliative end-of-life care: Impact of speech–language pathologists. Topics in Language Disorders 40(3), 264-277. https://doi.org/10.1097/TLD.0000000000000220
URL
The Art of Mentoring
https://artofmentoring.net/what-is-mentoring/
Aphasia Communication Enhancement Program, Western Michigan University https://wmich.edu/unifiedclinics/vanriper/aphasia
Fetzer Institute
https://fetzer.org/
Aphasia Access Podcast Conversation #84 Interprofessional Practice and Interprofessional Education: In Conversation with Mary Purdy
https://aphasiaaccess.libsyn.com/interprofessional-practice-and-interprofessional-education-in-conversation-with-mary-purdy
Aphasia Access Podcast Conversation #78 A Llama, a Resistance Band, and Neil Diamond Walk Into a Bar - An Interprofessional Exercise Program for Individuals with Aphasia: A Conversation with Michelle Gravier, Albert Mendoza, and Jennifer Sherwood
https://aphasiaaccess.libsyn.com/a-llama-a-resistance-band-and-neil-diamond-walk-into-a-bar-an-interprofessional-exercise-program-for-individuals-with-aphasia-a-conversation-with-michelle-gravier-albert-mendoza-and-jennifer-sherwood
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Interviewer info
Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia and other neurogenic communication impairments. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.
In this episode, Lyssa Rome interviews Dr. Janet Patterson about evaluating and treating auditory comprehension deficits for people with aphasia.
Guest info
Janet Patterson, Ph.D., CCC-SLP, is a Research Speech-Language Pathologist at the VA Northern California Health Care System in Martinez California, where she was formerly the Chief of the Audiology and Speech-Language Pathology Service. Janet has also held leadership positions in the Academy of Neurologic Communication Disorders and Sciences, and ASHA Special Interest Group 2, Neurogenic Communication Disorders. She is an ASHA Fellow.
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Show Notes - Episode
Next STEPS: In conversation with Professor Ian Kneebone
Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.
I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature Professor Ian Kneebone from the University of Sydney Technology.
Biosketch:
Ian Kneebone Professor and Head of Discipline (Clinical Psychology) at the Graduate School of Health at the University of Technology Sydney. He is a chief investigator at the Aphasia CRE and has led and co-facilitated much of the work on optimizing mental health and wellbeing for individuals with aphasia. His work on illuminating the stepped care model as a guide for clinicians working with individuals with stroke has helped speech-language therapists and other rehabilitation disciplines to better understand their roles in psychological care after stroke and specifically aphasia. He previously joined the Aphasia Access Conversations Podcast with me for Episode #34. We’re excited to have Ian joining us again, as so much work has taken place in the area of psychological and psychosocial interventions for individuals with aphasia in the past five years since that previous podcast conversation. Professor Kneebone and his colleagues have been at the center of that work, including developing and evaluating the ASK trial, the Kalmer relaxation program, collaborative goal setting, Reducing Emotional Distress in Stroke (REDS)and low intensity psychotherapeutic interventions, among others. In addition to Professor Kneebone’s large-scale investigations about psychological interventions, Ian is a clinician at heart, also very engaged in hands-on clinical work, where he directly collaborates with speech-language pathologists and other disciplines. I’m privileged to discuss these topics with Ian today.
Take aways:
Need for psychological care for people with aphasia: People with aphasia have higher rates of depression, anxiety, and other psychological needs. People with aphasia are twice as likely to be anxious or depressed as someone with a stroke without aphasia. Stepped care model provides direction: The stepped care model helps us to define scope of practice and where we fit in, based upon our level of training. It also provides guidance for psychological care that all speech-language pathologists/speech-language therapists are trained to implement. Behavioral activation: This is a direct connection to the Life Participation Approach for Aphasia (LPAA). Increasing engagement in personally relevant activities is at the heart of both approaches. Ian discusses where solution-focused brief therapy and acceptance and commitment therapy fit into the stepped care levels: With additional training, good evidence is developing for these approaches. There is a need for ongoing psychological supports in the chronic phase of recovery: Increased mood state is associated with better physical and communication outcomes AND dealing with the physical and communication issues can improve mood state. Shifting to “compensation” can make people with aphasia feel like they’re not going to recover further: We need to make sure that we have conversations about those shifts so that people don’t misperceive that shift as the end of progress. SLPs/SLTs need to train mental health professionals to use supported communication techniques to support their interactions: SLPs/SLTs may need training on how to teach other disciplines to support communication. People with aphasia should be involved in co-design work to address psychological interventions. From a research perspective, we need to involve people with aphasia and from an intervention standpoint, we need to involve individuals with aphasia.Interview Transcript:
Jerry Hoepner:
Today, it's my pleasure to introduce Professor Ian Kneebone. In Kneebone, is professor and head of discipline in clinical psychology at the Graduate School of Health at the University of Technology Sydney. He is a chief investigator at the Aphasia care and has led and co-facilitated much of the work on optimizing mental health and wellbeing for individuals with aphasia. His work on eliminating the step care model as a guide for clinicians working with individuals with stroke has helped speech language pathologist and speech language therapist and other rehabilitation disciplines to better understand their roles in psychological care after stroke, and specifically aphasia. He previously joined the Aphasia access conversations podcast with me for episode 34. We're excited to have Ian joining us again. As so much work has been done and taken place in the area of psychological and psychosocial interventions for individuals with aphasia. In the past five years since that previous podcast conversation, Professor Kneebone and his colleagues have been at the center of that work, including developing and evaluating the Ask trial, the calmer relaxation program, the collaborative goal setting, project and low intensity psychotherapeutic interventions among others. In addition to Professor knee bones, large scale in investigations about psychological interventions, Ian is a clinician at heart, also very engaged in hands on clinical work, where he directly collaborates with speech language pathologist and other disciplines.
I'm privileged to discuss these topics with Ian today. I'm excited to dig into this conversation. And I'm really interested in talking a little bit about your perspectives about kind of the intersection of speech language pathology, and psycho psychotherapeutic interventions, psychological care, those big topics in general. And I know that in our past conversations, we've discussed a little bit about just the profound need for psychosocial psychological interventions for individuals with aphasia and the kind of the lack of access to care for mental health providers, to individuals with aphasia. So maybe we can start out a little bit by just sharing your thoughts on the role of speech language pathologists in addressing communication-based psychological supports for individuals with aphasia and their families.
Ian Kneebone:
Well I think the first thing is to say that the whole stroke team should take responsibility for psychosocial issues and challenges, both from a prevention point of view, but also an intervention point of view. Where there's the potential to do so. Particularly with people with aphasia, the speech pathologist, or speech language therapist’s role is a real standout one. And we know frequently that this work, because of the communication problems, often falls to Speech, Language Therapists to, you know, by their own admission, feeling unprepared to do it. So, I think there's certainly the will there from speech language therapists to be involved in this work, we just need to provide the right training the right scope of practice, and to get things going. So, this this gap in services is filled. You know, you were talking about the rates of psychosocial issues, but we do know that if you've got a stroke, and you've got a phase, you're afterwards, you're twice as likely as someone with without aphasia after a stroke to be anxious or depressed and have very, very high rates. Even clinical levels of depression are common. I guess it's not surprising anyone who works in the area will know that, but it's still very sobering to restate that statistic.
Jerry Hoepner:
Yeah, it sure is. Just speaks to the tremendous amount of need and, and obviously, we know the tremendous amount of unmet needs for people with aphasia and their family members as well. Just because of how we're barely scraping the surface of this issue, I think, but making some good progress in those directions, you've done some really foundational work on the Stepped Care Model for stroke and even other populations as well. How can SLPs draw upon that model as a way to help them to understand scope of practice issues, to understand where they fit and kind of guide their interventions?
Ian Kneebone:
Well, I think Stepped Care has been really useful. And I've gotten great feedback on this not that I invented step care by any means. But certainly, the improving access to psychological therapies model from the UK started this off in mental health. But the opportunity is to convey and allow people to know where they can work and what's appropriate, and when they might need to refer on or co-work with, with another profession. And the Stepped Care Model really does that. So, people are able to say, Well, I'm involved in this group, it's designed to prevent things like depression and anxiety, which are very common, as we just said, and I'm able to learn these skills or apply these practices to improve outcomes and prevent this. But you know, at some point, when these levels of symptoms of such and particularly questions of risk, risk of self-harm, risk of suicide, those sorts of things, when commonly people would refer on to mental health professionals. And I think the unique ability of speech language therapists to provide supportive communication training for mental health practitioners and so on, means that the role goes beyond just prevention, and to actually intervention. But also, to say that the model where people stepped and matched to the level of care they need, means that, you know, there is a scope of practice beyond prevention for speech language therapists, and that's those therapists who choose to train in psychological practices and psychotherapies. So, we do know, for instance, there's some strong work going on at the City University in London, where they're looking at training Speech, Language Therapists in a particular sort of Solution Focused therapy, which is very well regarded as an evidence base. And that's provided by speech language therapists, with the right training and the right background, to develop the competencies and know how to manage risks, and so on. So, the Step Care Model allows people to see where they're at in terms of their scope of practice, when they're on or when, if they want to, what skills they might need to practice at a at a high level.
Jerry Hoepner:
Yeah, that's really well, well explained. And that's actually a really nice segue into my next question, because I know, the Step Care Model that you presented back in 2016 identifies some specific psychological interventions. So, you talk about motivational interviewing, cognitive behavioral therapy and a number of other approaches. I'm just interested is their kind of a plan in mind or a process in mind that will help to identify other interventions and kind of where they fall to give mental health professionals, speech language pathologists, and other disciplines, kind of a sense of where those other interventions fall. So, things like dialectical therapy and so forth?
Ian Kneebone:
Well, there's a range of therapies that we've found useful for people with, with mental health problems, and obviously, it's the application of those to people with aphasia that's the point of interest. And we do now have very promising work going on cognitive behavior therapy for people with aphasia, we've just completed a case series, which is just been accepted by Neuropsychological Rehabilitation, looking at modified CBT for people with aphasia, which is really exciting. We're doing stuff on behavioral activation, which is very promising for people with aphasia and relaxation therapy, we've just completed some case series work, looking at that. And that's really exciting because that was co-designed by people with aphasia, and then then then launched based on that very solid foundation. The more interesting or the very interesting work is being done on some of these, what we call third wave Cognitive Behavior therapies, which are things like Dialectical Behavior Therapy and Acceptance and Commitment Therapy, for instance. And a lot of that's been leveraged off the brain, the general brain injury literature now where people like Dana Wong, who's from LaTrobe University here has done some seminal work looking at modifying for people with cognitive and communication problems, Acceptance and Commitment Therapy. Reg Morris from Plymouth University in the UK has done some great founding to work with some of his PhD students and looking at Acceptance and Commitment Therapy for both carers and people with aphasia after stroke, you did mention before, it's easy to focus on, of course, the client or the patient with aphasia, but you know, the need goes beyond that, because the ripple effect of the, of the impact of the communication and, you know, the disabilities that commonly come with stroke as well goes to a person's social circle and familial circle, and including those people in therapy is, is an important part of the investigation as well. Absolutely.
Jerry Hoepner:
It's so common, we have partners who are socially isolated as well, just because they're the primary communication partner for that individual with aphasia, and whatever restrictions to participation, they feel, right, it's just all connected.
Ian Kneebone:
When I teach my clinical students, I often say like, you no, you've got an identified person who's been referred to you, but you've got to realize that nearby, there's going to be someone who's just as anxious and depressed, if not more so. But at that point, and that we do know, there's a reciprocity between anxiety and depression, that person with aphasia, and, and a significant care person. So, it's really important to include those people in therapy if you can, but being mindful of not including it in a way that adds to the significant burden and challenges. So it's got to be done in a really appropriate way without asking people for things that they're not able to provide, because they're just coping with things like role changes, financial issues, and you know, the loss of the person as the relationship they had with them on account of communication.
Jerry Hoepner:
Absolutely. And, as you were talking about that, it makes me think about how that changes over time as well. So those initial kind of burdens, that might be a tough time for them to engage in those kinds of conversations, because like you said, they're just trying to keep their head above water and trying to make it through everything else, all those other role changes and additional roles they've taken on. But I wonder about your thoughts in the chronic phase as, as both the individual with aphasia and their partners start to make those adjustments, if maybe that's an opportunity for some of those interventions.
Ian Kneebone:
Those often talk about that that phase is life after stroke. And that's usually about 12 months later, when we know pretty much how people's rehabilitation has proceeded. And people are pretty much aware of how they will be functioning on into the future. And as you say, I think there's a there's a sort of a crisis point when someone's having their stroke. And there's that kind of acute phase where people are adjusting, but the important thing at that time, people think well, my personal, my personal looking after, or I'm going to get better and so on. But it's when that realization happens. So, we find these sorts of emotional difficulties can occur early or later after, after a stroke, with or without aphasia, of course, and that, you know, it's important that people's needs be met, on into the future, the recovery phase in life after stroke. Because many people when we've done this in our qualitative interviewing and surveys by places like the Stroke Association, UK, that people often the 12 months, a lot of the care, a lot of the treatment or drops away. And then as we were talking about the feeling isolated, and well, this is all I'm going to get, and so on, people are really challenged at that time, and we need to be able to provide, you know, supports and therapies on into the future for those individuals. You know, depression, anxiety content, you know, is pretty consistent at any time after a stroke. And when we're really bad at predicting, I think, you know, who's going to be affected at what state so we're going to be going to be vigilant, and we have to be, you know, particularly vigilant, I guess, I'm probably preaching to the converted with your audience here, but that we know that people are anxious and depressed out of stroke effects, their functional outcomes, and including the communication outcomes and so on, you know, if somewhere, you know, I remember seeing someone with a with a swallowing problem and the Speech Language Service was very concerned about this. And they had a day of good mood, and they came to a day hospital party, and now reading these party pies like there was no tomorrow's person's actual ability to swallow. Now I'm not saying it wasn't about risk was altered by their mood state and that that goes across the continuum of the areas which speech language therapists are involved with. So really important for outcomes and not just mood outcomes. You know, being depressed or anxious is distressing in itself. But you know, the ability to make a difference to people's physical and communicaiton outcomes of addressing psychological issues is considerable.
Jerry Hoepner:
Yeah, I like the way that you describe that as being so intertwined and interconnected. So, you can't just separate those pieces out and say, I'm dealing with the physiological issues right now. Now I'm dealing with the psychological or the psychosocial and emotional issues, because there's so interconnected and, and I want to go back to a point you made earlier, which is, so often people early on have that sense of I'm going to be this, it's, I'm not going down the road a year, I'm not going to be one of those people who needs this. So, I'm just going to, you know, nose to the grindstone kind of work through this right now. But it can pop its head up anywhere in that recovery. And, and I think there's some reality that sets in once some of those initial supports are taken away.
Ian Kneebone:
I mean, one of the biggest challenges I've faced when I've been in in stroke rehabilitation, and working with Speech, Language Therapists is around when people are using compensation, being asked to use compensation, as a strategy for communication and kind of dealing with all that mean, I'm not going to get any better with my speech. And, and, and, you know, people get really angry, and it's their frustration, and so on, and there's, you know, therapists going to be blamed for it. So, there's a real, real strategy there for dealing with that, and, you know, working with people to retain, retain hope. But you know, being pragmatic with well, you're leaving the hospital, now, you're going to have to communicate there in the community, you want to get out and do some of the things or at least some of the things you used to then how are we going to do this? And how are we going to approach it? But yeah, it can be quite a crisis point.
Jerry Hoepner:
And I Yeah, and I think part of our role as a speech language therapist in that context, is to communicate that really well in a way that doesn't set them up for oh, you're switching over to compensatory approaches that you that means you think that I can no longer improve, in terms of my abilities, but rather to convey this is one of several things that we want you to do to be more successful, and to continue to engage. That's, I mean, that's kind of for speech language pathologists who are supposed to be good at communicating those things. We don't always do a very good job of communicating those things. I was thinking a little bit about Deborah Hersch's work on transitions and discharges and how poorly we do and saying, This is what's going to happen. We've got these limitations of the system. But this is the plan, this is not something that you did wrong, this is something that we just need to work through. And when we, I think when we feel discomfort about conveying things like it's time to transition home, or it's time to transition out of therapy, that we don't do a very good job of explaining those things.
Ian Kneebone:
Well, I've certainly worked with a lot of members of stroke teams, allied health and speech pathologists, but one of the one of the difficulties, of course, is when we feel uncomfortable about doing it, and it's not the news, people want to hear we kind of beat around the bush. And then when people aren't clear, and you've got people with cognitive and communication problems, it's kind of a perfect storm for it to go amiss. Yeah. So, I think one of the messages I give out is people think if they just communicate it really well, it'll all be fine, and it'll go work fantastically, and people will transition really smoothly. But it's a bit of a wakeup call to realize, however well you put it, this is sometimes news people don't want to hear, and that there's going to be a reaction to that. And just to appreciate that it's not necessarily your fault. But there's the reaction that is it is people becoming aware of limitations going into the future, not the not the recovery they wanted, but the recovery they've got and supporting someone through that is a challenge when sometimes, you know, you're the target of dissatisfaction.
Jerry Hoepner:
Right? No, that's such an important point. Just being cautious of that as well. Because certainly, certainly that's an important thing to consider. I'm interested in the process of interprofessional collaboration with mental health professionals with psychotherapists. What are your thoughts on the best way to approach a collaboration or setting up a collaboration with a mental health provider rather than an “oh, this person's got needs beyond what I can provide? Take them off my hands.”
Ian Kneebone:
It’s just so essential. One of the struggles we've had is that you know many people in my own profession, which is clinical psychology will say, well that this person can't communicate, I can't provide them with therapy. And that's so disappointing because we know if we modify them, we can do that. But certainly, my clinical experience in collaboration is that, you know, working closely with a speech language therapist about the best ways to communicate with someone they've, you know, very thoroughly assessed, is really useful in allowing me to learn and, you know, I work in session with, with therapists, as well as you know, gaining assessments and information and talking to them about that before it. And really importantly, there's a lot of in the research we're doing about collaborating, particularly with collaborating, particularly with speech language therapists, to be able to do those sorts of prevention work and, and therapies we've, we've discussed. And that's been such a joy working with Amanda Lakute, and some other people on that work, and Miranda Rose's team in looking at optimizing mental health and wellbeing in designing, for instance, Jas Sekhon’s work, we know, on teaching Speech, Language Therapists, you know, counseling skills, so that they feel competent to support people that first step on the ladder, but also dealing with how speech language therapists can obtain the skills. And also really importantly, this is bringing onboard people with aphasia, to the co-design work, to design things that we know will be effective with them rather. So, we're not doing things to people, we're doing things with people and looking at the best way of designing our interventions. And not just our research, but our clinical interventions, so that they translate well into the different environments, healthcare environments that we work in.
Jerry Hoepner:
Absolutely, and kind of three really important points for a speech language pathologist, one, having that training to feel more confident and comfortable with actually carrying out those level one, psychological interventions, but also having training on how to teach mental health professionals how to interact. So, training those communication support strategies is a big part of our role. And if there should be something that we're comfortable with, we should be comfortable as speech language pathologist with training others on how to use those communication supports and
Ian Kneebone:
Jas of course is a speech language therapist, Jas and she has got such a great course and such a nice way of delivering that in the speech, language therapy world that it's, it's so nice, and then people say, well, Ian, can't you go and teach us in counseling and like, you know, I'm happy to provide counseling training and different psychotherapies. But, you know, the role model that people like Jas provides in saying, well, this leads, not only can Speech Language Therapists use these therapies I can try and others in them because, but you also know, it's a competency within, within the scope of, of every practitioner really. Yeah,
Jerry Hoepner:
absolutely. And, and I think sometimes we forget about that piece, kind of think it's a given that we're going to be able to train other professionals, but I think, also, there's a little bit of that uncertainty, when you're working with someone else about expertise and roles and territory and all of those things you might kind of back off in terms of providing the thing that you are the very, you know, what is your kind of bread and butter, your biggest strength in terms of teaching those things. So, I agree, Jas is fantastic, and the work that she's done in that area has been just so helpful and moving us forward from an educational standpoint.
Ian Kneebone:
I guess as a psychologist, I kind of assumed a lot of that work would be the net training was available in courses but as we know, from the surveys and so on, but it has been a bit hit and miss despite the demands and like guidelines, like the Royal College in, in the UK, for people to have those roles, and then it's kind of I know, it's hard to fit everything into the into courses, because there's so much new material on different ways of intervening and assessing, but it's such a core skill that it's good to see that those who may have missed it on the way through that they're released post, you know, these master courses that provide people with to fill in that gap.
Jerry Hoepner:
Agreed. And again, there's a lot of a lot of training that still needs to happen yet and a lot more changes to happen in the graduate student training programs for speech language pathologists as well.
Ian Kneebone:
When I'm talking to you from Australia, of course, and we're no exception here despite you know the leading lights that we have in this country for speech pathology and trading and communication and counseling skills for people with aphasia we’re still working on it here and I know from your surveys, that's still a challenge in the US as well. So, it's a piece of work in progress.
Jerry Hoepner:
Yeah, it definitely is. At least there's some awareness of it. And we're starting to make a little bit of ground, I think in terms of awareness. And definitely when we have international programs for training, speech language pathologists and speech language therapists from a counseling standpoint, but also for working together collaborating on research internationally, I think that bodes well, for our future, I think we're moving in the right direction. I want to return.. Oh, go ahead.
Ian Kneebone:
No, no, I'm just agreeing with you. So Oh,
Jerry Hoepner:
Oh gotcha. I want to return to the other point that you made about codesign, with individuals with aphasia, involved in that process. And I might have you talk a little bit about the relaxation program that you co designed the calmer program and kind of how that was set up. And what you've learned from that?
Ian Kneebone:
Well, we pretty much it's run by Rebecca El-Helou, who's a PhD about the completed a PhD with me, and she's done a range of work, including the Kalmer project, which is part of what we call REDS, which was Reducing Emotional Distress in Stroke program. And we just thought, like, you know, relaxation, it's, it's one of these things that we know works with the general population really well. And, but it's not offered to people after stroke generally, or wouldn't necessarily people with aphasia after stroke. And so one of the things we wanted to do by that is, you know, start developing the evidence base, and we thought, you know, really, there are all these great relaxation programs out there, but will they work with people with aphasia, I mean, the advantages, of course, they can be very communication life, because of the nature of the interventions, you know, which is about, you know, focusing attention, reducing autonomic arousal, using breathing and so forth. So, they can be very nonverbal. So, with you, this is eminently suited, and it's also something that could be online, it can be on your phone, right. And it's such a great thing in terms of accessibility. So we work with people with aphasia, because we thought like a lot of, despite the low level of communication required, that it may not suit everybody, we weren't going to assume that people with aphasia would, would take to it necessarily, and we're so pleased that we got a group I think about 10 or 11, people who were involved with us in looking and going through the, the sort of standardized programs, and then looking at how we could reduce down the communication, and how we could also, you know, just make it user friendly, and whether people needed to care or not to support them in, in getting them online to do it. And just really tightening up something and tailoring it to people with aphasia. So, we've got about two levels of communication, for instance, which people can dial up depending on their needs. And, you know, and while I say we will talk with people with aphasia, we also of course, include speech language therapists and uh Brooke Ryan, you may have heard her doing her work, she's out in western Australia at Curtin University now doing a great job in, in looking at psychosocial work with people with Aphasia out there. And, you know, certainly it was gone, guided by all the current guidelines on supporting people with aphasia, not only to do the relaxation training, but to communicate their views on the relaxation training and how we might modify it to be more appropriate. So that was great. And we also have recently done behavioral activation study, there’s just been a publication in Aphasiology about behavioral activation, which is an intervention, which, at its simplest, is a getting people re engaged with their environment, doing things that they enjoy that they've got mastery over, and they value. And also looking at how it can produce an online program that would support people once again, with or without a carer, to undertake that in a really accessible way assessing accessible communicatively but also because it's online, it's available at the time of your own choosing. And we're really lucky we may not be known as well internationally is in Australia, but we had a lot of work from the Black Dog Institute here, which is developed a lot of online programs. So, we also benefited from their huge expertise in this area, in, in developing something that we hope is going to be really great for people with aphasia and, you know, just get the resource out there. I mean, some of the work we've done is trying to get, you know, health services to be out able to offer treatments but you know, getting clinicians with the time. And you know, getting resources to do that is a real challenge. So, you know, we've got to go with where people may be able to access things themselves through Stroke Association, stroke, foundations, those sorts of things, where possible, so that we can get things out there and kind of like, circumvent all the problems of resourcing in the health community, which, you know, we've got a very different approaches to healthcare in the US and Australia, but the same, the same struggle in trying to get resources to people. And so, we're just looking across the board and how we can do that in this online stuff, particularly with the assistance of real experts, like Black Dog has been a great opportunity here. And we're just like, inevitably looking for funding for the next stage where we can roll it out and provide an evidence base to how useful this might be to people with aphasia after stroke.
Jerry Hoepner:
I think that's so useful. And I want to kind of make the connection between behavioral activation and the Life Participation Approach to Aphasia interventions that Aphasia Access stands for. And that's just such an important part of everything that we do from a life participation approach is increasing that participation, finding ways to get people reengaged in authentic, meaningful things that they care about. So, I want to make that connection. And the way that that might look for individuals could be part of a community group, it could be an aphasia camp like we offer, and I know that Linda Worrall’s group started at a camp in Australia a couple of years ago as well. So they've got a couple under their belt, or, and I think I like this extension into the accessible online format that can reach as many people as possible, even if that's like the way that gets them into the loop, because I think it's hard initially to, to invest in going someplace or becoming a part of a group, things like that. But certainly, there's something to be said about once you're in and once you have that success that comes with having the right supports and having peers who understand you, then it's a little bit easier to take that next step, I think,
Ian Kneebone:
Oh, absolutely. And like the across this kind of leisure rehabilitation is something our occupational therapies, therapists colleagues talk about, and the behaviors talk about environment enrichment and so on. And, you know, battle activations, all in that ballpark, and really important for people, as you say, it's certainly part of, you know, Miranda Rose and her team are doing work on community aphasia groups, which are kind of exciting, because they're led by people with aphasia, once again, because of the resources, issues that happens with, you know, trying to fund these sorts of activities. And, you know, there's, that's certainly an important part, and also meeting in the group, as you know, is a valuable, enjoyable experience, both in terms of the support from right from people, you know, looking at what other people are doing, and getting engaged with that, but also, you know, being on a similar journey, and the support that that can give to other people's is, is really valuable, I think, is as part of the process that leads to the positive experiences from those groups.
Jerry Hoepner:
Absolutely. And I, and I hope our listeners I got pretty savvy listeners, I hope they pick up on that connection as an important way to return to those meaningful activities and to have a positive effect on mood and other psychological domains.
Ian Knebone:
Well, watch this space because the works, you know, the initial works being done, but they're rolling it out in Australia, where they've just got some, some country-type areas involved in offering this training to people. So they've developed some really comprehensive training things for the materials for the people, the professionals that support this program, but also for the people with aphasia who lead the groups. There's a PhD should Kathryn Pettigrove, who, who you should get a podcast on, she's just amazing and excited about this work, and you may have seen her in the US recently, but such talks with such enthusiasm about it. So, I would recommend that to you and your listeners. And as the evidence comes out, and it's going to be a great model, I think for helping people to help themselves. Really.
Jerry Hoepner:
Absolutely. And you're right, we definitely need to get her on this podcast. I’ll write that down as soon as we're done, make sure that we follow up with that terrific point. (See episode 86)
Episode #86: Making Aphasia Groups Work
Ian Kneebone:
And she's just so enthusiastic, new energy coming into the, into this area, not that there's a lack of energy, but it's just nice to see that, you know, a few people hanging on the baton.
Jerry Hoepner:
Absolutely. Yeah. It's great to great to spread that out. Because there's so much to do. There's no no lack of things to do in this area, for sure. I'm interested in your thoughts. You talked a little bit about Jas Sekhon, but your perspectives on training, both future speech language pathologists who are in their training programs and existing speech language therapists pathologist who are already working clinically in seeking continuing education. Can you talk about some of the keys from your perspective to making that education successful?
Ian Kneebone:
The first step is, you know, there's still a little bit of work in saying this, you know, convincing people this is part of their role, because some people will, will think, Well, no, I just hand this over to the psychologists that I you know, I don't think we can, we can accept that but, but moving forward. With that, it's really integrating, you know, the right, you know, say step one type interventions like problem solving, behavioral activation, relaxation therapies, and so on, right in into training courses, because these, these are things that, you know, people say, what's a psychological therapy? How am I going to do that? Well, it because it's psychological therapy, it doesn't have to be done by a psychologist is the first point. And a lot of it's kind of manualized and fairly intuitive to professionals. And many people come and say, you know, problem solving, and I've been dealing with all these challenges in my life already. And this just makes such sense. I wish I'd kind of it just, I should have known this already. Because, you know, I'm a slight person, I've got a master's degree in speech, and language therapy. But you know, it's so useful to me as well, and handing over to my clients is just really great. I mean, we do know, there's some work that's been done in the UK looking about Peter Knapp and his colleagues at looking at problem solving as a prevention and, you know, really good RCT results on how that prevents, you know, psychiatric psychological symptoms after stroke.
Jerry Hoepner:
Absolutely.
Ian Kneebone:
So, I think it's just rolling out and getting people to be to get over their concerns about and Jazz Jazz program. If you would, then that's, you know, specific counseling skills, but also then add some of these other strategies in. And we've got some experience in doing that recently. It's with step care, Carolyn Baker, who's at Monash University here in Melbourne, has been doing some work with with both online and offline online because of COVID in rolling out these therapies with allied health practitioners, including psychologists, but also Speech, Language Therapists, and being able to do that, and the main thing is just the kind of the structural issues in, you know, adding to people's workload, and allowing the system to support the investment that will, you know, lead, as we say, not just to people coping better with things but also improve, you know, the functional outcomes after stroke. So, while that's been a bit of a mixed feast, in terms of, you know, outcomes, because it's just been so hard to get these systems to take on board the training and get, get the people through these very straightforward psychological interventions that we know will almost certainly benefit people. But we're doing that, as I say, a two-pronged approach, we're looking at the self-help co-design work that can go online and so on and be accessible that way. And also trying to, you know, train every day, healthcare workers in being able to provide these to people with aphasia.
Jerry Hoepner:
Absolutely, and when you say, fitting in to people's schedule, or their workload, I mean, I just think that goes both ways, because not addressing these things really limit your outcomes in terms of, kind of, like you said, the communication outcomes are going to improve as those psychosocial outcomes begin to improve.
Ian Kneebone:
You know, it's short sighted not to make this investment. But you know, doesn't mean it'll net. And so, you know, the logic doesn't necessarily follow, right. In terms of what happens with healthcare resources. And the other thing is, I guess, we're talking about all what suspects with therapists, fleet Language Therapists role is really important that not to throw the baby out with the bathwater is that, you know, like, if someone's communication can improve their depression and anxiety will improve as well. So, you know, as I often say, when I'm talking to training other allied health people, you know, we've all you know, you've all abandoned the session because someone said or stressed or upset and so on. But if you keep on doing that, something's got to change. You can either refer them on or do some collaborative work with somebody, but not, you know, not stopped doing the OT or the physio or speech language therapy, because you know, those things have to come along with as you were saying earlier, they're all joined up.
Jerry Hoepner:
Absolutely, no, that's a, that's a really great point. And they all have to happen simultaneously to be effective, for sure. Ian earlier, you were talking about Carolyn Baker's work, her recent work, and I'm really interested in the low intensity psychotherapeutic interventions from the eDelphi study. Just wondering about kind of your thoughts on what the place is for those you mentioned occupational therapist, physiotherapist, speech language therapist.
Ian Kneebone:This is Carolyn's most recent work, which is the last data we kept it in the middle of this year has been rolling out training to people, you know medical nursing, speech language therapists and also psychologists in kind of first level step care for people with stroke. So, people were enrolled in the program, and some was telehealth some was not. And they would then choose one of three therapies that they thought might suit them best. And that would be problem solving behavioral activation or relaxation therapy, and then they'd have seven sessions of therapy with that. So these were people who weren't necessarily psychological therapists, although some were providing, providing these sessions within a current health system that's operating day to day with the practitioners from the current health system, rather than you know, someone coming in and doing a great RCT. But then the resources disappear, and you go away, no matter what you prove, one way or the other. And that's been a real eye opener, I mean, that there were major challenges when we started that because of COVID, because so many healthcare workers, as I'm sure there were in the, in the US were, were redirected to other tasks to do with the epidemic. But we've soldiered on, and got that it's a really great learning experience to see. See how that went, how it was rolled out. And we've got one at a time and qualitative evidence that we're going through, it's starting to sift through at the moment to look at what we can really learn from that project about how we do this going forward. I mean, I do not at the moment, it's just that that redirection of resources, particularly under COVID, was so difficult. And that was perhaps a unique time. But the resources, as I was saying earlier, are always under scrutiny and precious. So, right. It's about I think, partly getting the evidence base and so on. So we were talking about relaxation therapy recently. And I've got the irony of people saying, well, you know, you put it in a grant application to do to demonstrate the treatment efficacy, and people said, well, it's relaxation therapy, why wouldn't work? Of course it will work. And then, and then the people say, well, we can't put it in policy, because there's no evidence base. So you kind of you know, it even the same, the in the same grant round. Yeah. And so we're just doing it anyway, we're doing it with PhD students, we're doing it with, you know, startup resources that Miranda Rose in the Center of Research Excellence in Aphasia Rehabilitation in Melbourne have got hold of for us. And we're going to demonstrate the usefulness. So, people will put it in their guidelines and so on. And then the UK National Stroke guidelines, say all this great stuff about some relaxation training, we do the same, but there isn't sufficient, not sufficient numbers, significantly power to demonstrate efficacy and so on. I'm just really grateful they mentioned some of Vaour work. But then I kind of have well, yes, but and, you know, that means it's not rolled out. I used to work in a stroke rehabilitation word in Vatum, in the UK, and we had a number of Allied Health assistants, you know, physiotherapy assistants who've gone off and done all this training in how to do relaxation with people that didn't get any time to provide. So it's kind of like, oh, gosh, you know, it is hard to, sometimes to, to get this happening. But you know, I think there is saying that, but there is kind of a, it's a right time. And you were talking to me before about, you know, five, you know, psychosocial guidelines for people with aphasia, and so on that were being developed. And I think the more that we do that, the more the ability will be there to leverage those resources to people who need them.
Jerry Hoepner:
Agreed. I think that is a really good place to start to wind down our conversation because I think we're moving in the right direction. Still, still plenty of work to do, but I'm wondering, kind of as a as a summary are there are two or three things that you think speech language therapist, working with people with aphasia should keep in mind from a psychological intervention standpoint, and what's a good starting point?
Ian Kneebone:
Well, I think it's probably the three things I do is like, you know, take it on as part of your work to be aware of these, these these issues and try not to shy away from As tempting as that may be. So, the first thing is, you know, there are good instruments for now that we have screening for anxiety and depression so you can pick those up and they're well within your skill base to use. And then getting the skills and training and things like counseling if you don't have them already, or you don't feel confident in using them, and then getting access to some of these other things. So like Caroline's work, you know, we're hopefully the publish the manual shortly that can guide people, speech language therapists in using those treatments. So that will be something that's out there and a resource that people can use. And once again with it well within the competence of, you know, speech language therapists. And I think finally, you know, just using the great communication skills you've got, even when you're sort of giving people difficult news to receive that. And just being as clear as you can be, you know, how to do the communication. And, you know, kind of accepting people are going to be frustrated. But, but giving it the clarity and the justification in a way that retains people's hope for further recovery but it's pragmatic, to get them functioning as well as they can in the community, because that's so much of the key to people going forward.
Jerry Hoepner:
Absolutely. And that's, that's our whole goal to get them reintegrated as much as possible.
Ian Kneebone:
So, awareness, skills, communicating effectively regarding the difficulties and the challenges.
Jerry Hoepner:
Excellent summary. Well, Ian, it's been fantastic having this conversation. Great to have it again, I don't remember exactly how many years ago we talked. But it's great to have that follow up conversation. And I know our listeners will really enjoy this conversation. So, thank you for being here today.
Ian Kneebone:
I’m more than happy to help out and thanks for all the speech language therapists who have contributed to my work. I wouldn't be here without them. And it's great to see this interprofessional learning moving forward. If I hadn't missed out any of the great people I've worked with, I do apologize. But there's just too many of you now, which is part of the success story.
Jerry Hoepner:
Yeah, that's a good problem to have. Well, thank you again. Goodbye.
Ian Kneebone:
Thanks, Jerry.
Jerry Hoepner:
On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.
Resources:
El-Helou, R., Ryan, B., & Kneebone, I. (2023). Development of the “Kalmer” relaxation intervention: co-design with stroke survivors with aphasia. Disability and rehabilitation, 45(9), 1517-1529. Kneebone, I. I. (2016). Stepped psychological care after stroke. Disability and rehabilitation, 38(18), 1836-1843. Morris, R., Eccles, A., Ryan, B., & Kneebone, I. I. (2017). Prevalence of anxiety in people with aphasia after stroke. Aphasiology, 31(12), 1410-1415. Ryan, B., Bohan, J., & Kneebone, I. (2019). Help‐seeking and people with aphasia who have mood problems after stroke: perspectives of speech–language pathologists. International Journal of Language & Communication Disorders, 54(5), 779-793. Ryan, B., Kneebone, I., Rose, M. L., Togher, L., Power, E., Hoffmann, T., ... & Worrall, L. (2023). Preventing depression in aphasia: A cluster randomized control trial of the Aphasia Action Success Knowledge (ASK) program. International Journal of Stroke, 18(8), 996-1004. Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. (2019). Counselling training for speech–language therapists working with people affected by post‐stroke aphasia: a systematic review. International journal of language & communication disorders, 54(3), 321-346. Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. L. (2022). Counselling education for speech-language pathology students in Australia: A survey of education in post-stroke aphasia. Aphasiology, 36(12), 1417-1446. Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. L. (2023). A phase II randomised controlled trial evaluating the feasibility and preliminary efficacy of an education program on speech-language pathologist’self-efficacy, and self-rated competency for counselling to support psychological wellbeing in people with post-stroke aphasia. Topics in stroke rehabilitation, 30(8), 842-864. -
Interviewer info
Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.
In this episode, Lyssa Rome interviews Teresa Gray about creating equitable services for people with aphasia who are bilingual, non-English speaking, and historically marginalized groups.
Guest info
Dr. Teresa Gray is an Associate Professor in the Department of Speech, Language, and Hearing Sciences at San Francisco State University, where she directors the Gray Matter Lab. Teresa’s research aims to improve aphasia health care outcomes for historically marginalized populations. Her research interests include bilingual aphasia, the mechanisms of language control in aphasia, and the role of language rehabilitation and its short-term and long-term effects on functional communication. Her team is working to develop evidence-based treatment methods for non-English speaking persons with aphasia, as well as bilingual persons with aphasia. In addition, the Gray Matter Lab hosts identity-based conversation clubs. The goal of these groups is to increase quality of life for the participants, and the lab is starting to examine why these groups are so meaningful to the participants.
Listener Take-aways
In today’s episode you will:
Understand why careful listening is important when working with bilingual and non-English-speaking people with aphasia and their families. Describe how speech-language pathologists can tailor their treatment to meet the needs of bilingual people with aphasia. Learn about identity-based aphasia groups.Edited transcript
Lyssa Rome
Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication conditions in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group.
Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Teresa Gray, who was selected as a 2023 Tavistock trust for aphasia Distinguished Scholar, USA and Canada. In this episode, we'll be discussing Dr. Gray's research on aphasia treatment for bilingual and non-English speakers with aphasia, as well as identity-based aphasia conversation groups.
Dr. Teresa Gray is an associate professor in the Department of Speech, Language, and Hearing Sciences at San Francisco State University, where she directs the Gray Matter Lab. Teresa's research aims to improve aphasia health care outcomes for historically marginalized populations. Her research interests include bilingual aphasia, the mechanisms of language control and aphasia, and the role of language rehabilitation and its short-term and long-term effects on functional communication. Her team is working to develop evidence-based treatment methods for non-English-speaking persons with aphasia, as well as bilingual persons with aphasia. In addition, the Gray Matter lab hosts identity-based conversation clubs. The goal of these groups is to increase quality of life for the participants. The lab is starting to examine why these groups are so meaningful to the participants. Theresa Gray, welcome to the Aphasia Access Conversations Podcast. I'm really glad to be talking with you.
Teresa Gray
Thanks so much, Lyssa. It's great to be here today.
Lyssa Rome
So I wanted to start by asking you what led you to study bilingualism and aphasia?
Teresa Gray
Sure, that's a great question. So, you know, really it was about curiosity. And so when, when I finished my master's in speech language pathology, I was working in Los Angeles at Rancho Los Amigos National Rehabilitation Center. And I was working alongside a phenomenal group of speech language pathologists and a rehabilitation team, and it was just a wonderful experience. And a lot of our patients were bilingual. Some people were monolingual, non-English speakers. And it was just a situation where I was learning more and more about how to treat this population that may not speak English, even though a lot of our aphasia materials are based on English speakers. And in addition to that, I was curious to know more how does language present after stroke? If someone is a simultaneous bilingual versus a sequential bilingual, does that affect life after stroke? What about proficiency? What about language dominance? What about age of acquisition, all of these issues that go into language presentation—I was very curious about, and there wasn't a lot of research out there. And so, of course, as SLPs, we read the literature, and we really want to know, what is best practice.
So when I decided to go back for my PhD, I decided I wanted to go study with Swathi Kiran, who is a leader in the field working with bilingual adults with aphasia. And so I had that opportunity. And I moved from Los Angeles to Boston to go study with Swathi. That's when I really dove into learning more about cognitive control and what that looks like as far as like language control, and how that interacts with cognitive control and how that's represented in the brain, and what that means for our patients.
Lyssa Rome
And since then, I know you've moved into treatment. Can you say a little bit more about that?
Teresa Gray
Yeah, absolutely. So after it, yeah. So after Boston, I accepted a faculty position at San Francisco State University. And I continued with the cognitive control work. But that's when I realized, yeah, that's fascinating work. Because it's really better. It's getting to know it's learning more about the brain. And I think that's so important. It's so fascinating.
But I think what's also important with our patients is how does the rubber hit the road? How are these people, our patients and their families and caregivers, and the stakeholders, how are they affected by the aphasia? And what does that look like? And so that's when I started, I expanded my research agenda and the program, and I teamed up with Chaleece Sandberg. She was already working on ABSANT, which is abstract semantic associative network training. And that's a treatment that if you train concrete words, they get better. But if you train abstract words, they get better, they improve, but we also see generalization to the untrained concrete words.
So when she and I started talking about it, and you know, I bring the bilingual piece. And so we really wanted to develop a bilingual version of ABSANT. And the idea here is that when you treat the dominant language, it improves. But if you treat the non-dominant language, it improves, but you also see cross-language generalization to the untrained dominant language. And as we progressed through these this work, we really we started to realize that it's not just spreading activation that supports the cross-language generalization. There's this level of cognitive control.
So to achieve the cross language generalization, we're seeing that not only do you treat the non-dominant language, but patients also need to have intact cognitive control mechanisms at play. So the direction we're moving in is that if we have patients that come to the lab for bilingual ABSANT, we also make sure that we administer some of the nonverbal cognitive control tasks to get a sense of how they're processing that information, because that informs how we interpret the ABSANT performance.
Lyssa Rome
It sounds like really interesting and important work. And we we've interviewed Chaleece Sandberg on this podcast. I'll put that link in the show notes. Can you can you say more about bilingual ABSANT and what you've learned?
Teresa Gray
Yeah, sure. So what we've learned, like one aspect that we've come across is that just like, one size doesn't fit all is the same with therapy. And it wasn't before too long that we realized that this bilingual therapy isn't a great fit for all patients. And I'll tell you what I mean, like most bilingual therapies, we're treating patients within monolingual contexts. So you'll treat English and then you treat Spanish.
In my lab, one of our goals is we're really trying to be as inclusive as we can. And if a patient comes to us and speaks a language combination, let's say Russian and English, we think about do we have resources? I mean, do I have students available to administer the intervention? Can we norm the stimuli and I've been fortunate enough to have many bilingual students who speak a variety of language combinations. And being in California, most of my students speak English and Spanish, but I've also had Polish-English combinations Chinese-English, Russian-English and a few others.
What I'm getting to is that a few years back we had a Tagalog-English English speaking patient, and a very motivated student who wanted to administer bilingual ABSANT. And what we found was that during the English phase, it went as usual but during the Tagalog phase, both patient and clinician reported that it was just, you know, quite frankly, it was weird not to code switch, and it felt constrained and unnatural. And so really the logical next step was to think about, well, really to question, why are we delivering a bilingual therapy in a monolingual context, we shouldn't be doing something where it's more of a code switching based therapy that really fosters the communication that the patient needs.
So this was a few years ago, and at the time, we didn't have the bandwidth or resources to address this. And unfortunately, that's how research functions—it’s really about capacity and resources. But now here we are, and last summer in 2023, we did start norming our Tagalog data set, and to really move forward with this, a truly code switching, or as some folks are calling it translanguaging, like this new, another phase. So we can actually look at what is most beneficial for these patients who are code switching in their natural environments. And so thus far, we have run one patient who has who has gone through this translanguaging experience. And we're quite fortunate to have two more patients on deck. And so we're pretty excited about this.
Lyssa Rome
Yeah, that's really exciting. And I think on this podcast, we talk a lot about life participation, the life participation approach is about making therapy as real to life as possible, and I think what you're describing is targeting therapy to the way that people actually use language. Whether you call it code switching, or translanguaging, the way we deliver therapy to people who are bilingual or multilingual should mirror in some way, their experience of speaking more than one language. Am I getting that right?
Teresa Gray
Yeah, absolutely. And I think it also touches on you know, I think it's important that we listen to our patients, other clinicians, family members, and if you're working with students, listen to your students. For quite some time, my students have been asking about non-English interventions for aphasia. And we all know that the majority of aphasia interventions are based on English speakers. But the thing is, if we're simply adapting English aphasia interventions for non-English languages, does that create treatment resources that are culturally and linguistically appropriate?
Now, regarding the cultural piece, oftentimes you can choose stimuli to be culturally appropriate. But what about the linguistic aspects when you take a treatment and simply adapt it to another language? And I think it's important that we stop and think about this issue. And I'm in a situation where my students are thinking about social justice issues within the field of speech pathology, and we're thinking about patient access to services, and what those services are, and are they equitable across diverse linguistic populations?
Lyssa Rome
It seems like you're talking about really listening to and understanding and asking the right questions of all of the stakeholders—the students, the clinicians, and, of course, the people with aphasia. And, as we were preparing for this podcast, you talked with me a little bit, and I was really interested in what you had to say about, the importance of understanding client's language history and how they use language. And you had some ideas for how to elicit more information about that. Would you mind sharing that for a moment?
Teresa Gray
Well, one thing I've learned to ask, and I learned this from Maria Muñoz, who's down in Los Angeles. One thing I think it's really important is how we ask questions to our patients and their families. And so rather than asking someone if they're bilingual, which can be a loaded question, and people interpret it in different ways, because some folks think, well, to be bilingual, you need to be highly proficient in both languages. But really, that's not the case, right? Like, we want to know if people have exposure or if they use a language other than English. And so rather than asking you, if someone's bilingual, you can say, “Do you speak another language other than English?” Or “Do you understand another language?” And then people really start to open up.
Another important way to ask questions is, you know, who are you directing your question to? Are you asking the person with aphasia about their needs and what they want to do, versus the families? Sometimes families will say, “Our 24/7, caregiver is speaking Tagalog.” Let's say you're Spanish, so they really need to speak Spanish, but maybe the patient wants to get back to their, you know, a club or something, you know, some social group that they're a part of, and they want to practice a different language.
So again, you know, the language history, the way we ask questions, I think it's quite important when we're gathering information so that we can develop, you know, these rehabilitation programs for patients.
One way that we're addressing equitable services in my lab is that we've thought with my students and I we've thought about going back to the original ABSANT. So original ABSANT was developed for English monolinguals. And we decided to push ahead with a Spanish monolingual version. And this is quite important in the United States. This population, Spanish speakers, are growing, especially in certain areas, of course, in California. We really wanted to see we're assuming that ABSANT can be adapted to various languages. And theoretically, it should make sense. But I think it's important that we have the data that shows it. And so we've in this past year, we've started collecting data to actually show that yes, it is effective, because I think as conscientious clinicians, and in our profession, we talk about best practice. It's important that we show it. And so, moving forward, this is what we're doing and we're quite thrilled that we have the resources and the opportunity to move forward with this type of a project.
Lyssa Rome
It sounds like you're describing how equitable services starts with research that's more inclusive and is itself more equitable.
Teresa Gray
Absolutely. And I think it also it reminds me of how do we capture improvement? How do you measure success? Because right now, when we're doing research, or right now, when we're doing research, and also clinicians out there in the field, we talk about data collection, right? How are you measuring improvement? And for us in the lab, we're looking at effect sizes, but sometimes these effects sizes aren't significant. However, the patient reports that they feel more comfortable, and they're more confident at family gatherings, or out in the community, and that maybe they won't ask for help at the grocery store, but if they need to, they're not scared. And I think that is so I mean, that's invaluable. But how do you measure that? And how do we incorporate that into our data collection? And how we report improvement to the funding sources? Right? Because all of us I, you know, you can't get very far when without talking about insurance dollars and how we measure improvement to get more services for our patients.
Lyssa Rome
I think that that's, that's absolutely true. And I think we have to measure what's important to the person that we're that we're working with. I, I also wanted to talk with you about the identity-based conversation clubs that you have been working on at San Francisco State. Can you say a little bit more about those?
Dr. Teresa Gray
Yeah, sure. So we do have a few different groups, conversation groups, through my lab. And one group, it started out as just a service to the community. And so we started an English-speaking group. And at first a few years back, we were in person, but we transitioned to Zoom once COVID hit, I was very impressed with my team, because here in California, when things shut down in mid-March, within three weeks, the group was online.
Around that time, maybe a few years ago, we started talking about a Spanish-speaking group, we do have many bilingual patients who are Spanish-English bilinguals, a few of these folks are more comfortable speaking in English. That's their emotional language, and it's their human right to use that language to communicate. So my lab put together a team to start hosting a Spanish-speaking group. And what we've seen is that there's just a different dynamic, when you're speaking in the language that you're most comfortable using. Jokes are different. Chit-chat is different. And we found that patients report a great appreciation for the Spanish-speaking group. In addition to the Spanish conversation group, we also have a Black conversation group that's facilitated by Black student clinicians. This group was started back in January of 2022.
Lyssa Rome
And we spoke with some of the members of that group on this podcast and I'll again, I'll put the link to that in our show notes. And they were the people who participate in that group. Some of the members of that group had a lot of really positive things to say about how meaningful is had been to them to be amongst other Black people who share their experience. So maybe you can say a little bit more about that group?
Teresa Gray
Yes. So this group, it was started based on public interest. So one day in 2021, I received a phone call from a woman whose father had suffered a stroke. And she said to me, my dad is Black. He frequently attends aphasia groups. But the majority of people are white, where's the diversity? She was essentially asking, Where's the diversity? We know Black people are having strokes. But where are they? And what resources are there for people of color who have strokes? And of course these are important points that she's raising. And, in fact, leading up to this woman's call, my students and I were, we had been talking about starting this type of a group, but I wasn't sure if there was interest.
But that being said, we know when we look at health disparities, and we look at the data, we know that Black people have as much as a fourfold higher incidence of stroke than their white counterparts. But Black people are less likely to receive rehabilitation services. And that's just not right.
I have, you know, in this group, like you were saying, lists of people are so appreciative, and they're so interested, and they just really value this group. And I've had some of these patients who have said to me, Look, it was the summer of Black Lives Matter, people were getting murdered in the streets, people were rioting, and there was this national discourse going on about it. And they wanted to talk about it. But their aphasia conversation groups, were talking about the weather, or sports or the things that just seemed inconsequential at that time in their lives.
And I think this just gets back to the importance when we think about identity groups—what they are for these people with aphasia, and how do we facilitate and coordinate them? And especially, you know, when the majority of SLPs are white and monolingual? How do we step into this arena? And how do we support and how do we, how do we move forward with these, you know, with these groups that are so valuable and meaningful for people with aphasia? Yeah.
Lyssa Rome
I mean, I think it's incredibly important work. What have you learned about some of the best practices?
Teresa Gray
Sure, yeah. So I think it's all about, you know, being open and listening, but also learning how are you an ally? How do you ask questions? How do you make yourself vulnerable? Because if you're not sure about something, you want to ask. And, you know, sometimes with these groups, we've all left groups or situations where we reflect upon like, “Oh, I said, I said something—was that appropriate? I don't know.” But again, it's making ourselves vulnerable, and asking you to going back to the group next week and say, “Hey, I heard this, or I said, this, was that appropriate?” I think it's just being comfortable with this kind of discourse. To get there, it just takes practice, which just is, you know, going through the motions and doing the work and going through it and experiencing it.
Lyssa Rome
It seems like that's something that you've really prioritized within your lab and with your students and in your work.
Teresa Gray
Yeah, and you know, and we make a point to talk about it, we talk about what it looks like, how it feels, and sometimes those are hard conversations to have. There's literature out there. There's different resources to lean on. But it's definitely I mean, we're all learning as we going as well as we're going and I think it's about having just being reflective, which which can be challenging. But I think that I think as we come through to the other side, we're growing and it's this bi-directional growth, whether it's me and my students, us and the patients, the caregivers, just having these honest conversations because I think our goals are the same, right? Our priorities are to improve quality of life. And and that's essentially what we're doing.
Lyssa Rome
Coming back to bilingualism, I'm wondering if you have any additional thoughts or advice about use of interpreters, or thoughts for bilingual clinicians? How can they best work with and support people with aphasia? Who are also bilingual? Or who are non-English speaking?
Teresa Gray
That's a great question Lyssa, because many of us, many of SLPs are not bilingual. And quite frankly, even if you are bilingual, you may not speak the language of that population where you are working.
So it's so important that we partner with our interpreters. And know knowing who they are at your site. And this is tricky, because when we talk about this, one recipe isn't for everyone, because all sites are different. The way interpreters are set up in one hospital differs from the next hospital. So you need to know your system and then figure it out. Because if you want to start a conversation group, and you don't speak that language, you're gonna have to team up with the interpreter. And, and I think my advice now is, you know, it's not just about asking the interpreter about that culture or language, it's about doing your homework.
So for instance, if you have Spanish-speaking groups, it's important to know what countries your patients come from. And this is valuable because holidays vary across countries, and even within countries holidays and traditions will vary. So you know, when these and these variations can feed into your group discussions. So for instance, around the holidays, people can share what they do with their families, what foods do they eat, how do they celebrate? Last year, we had a Spanish-speaking group, and it was around the Fourth of July. And so rather than talking about the US Independence Day, each participant shared what their country's independence day looked like, and growing up what their traditions were. And people really enjoyed that type of activities.
As clinicians, learning about cultures, is so important. I know SLPs, you know, your time is so valuable, right? Like, our caseloads are high, but we can learn bits of information, talk to interpreters, explore topics, and then have activities. And if we go into it with open, you know, just creating a safe space where we're all learning, I think it creates this environment where people feel welcome, and they're comfortable. It's a positive environment when you have an SLP, who may not speak the language, but you have an interpreter who does. And then the participants, of course, they speak that language as well.
Lyssa Rome
It reminds me of what you were saying earlier about the importance of careful listening to the people that we're working with, including interpreters, right, but also particularly the people with aphasia, who we’re serving. Are there any other best practices that you want to share for SLPs who are working with historically marginalized populations of people with aphasia?
Teresa Gray
Well, I think at the end of the day, it's important that when we go into these environments, thinking about what materials are we using? How are people responding? And creating a space that if we have open eyes, we're open to suggestions. It creates an environment where people are comfortable to share, and, and then even when people give feedback, we can also improve our practice.
Lyssa Rome
I think that that's at the heart of what we aim to do as, as people who believe in the life participation approach. So thank you for that. I'm wondering as you look ahead, what's on the horizon for you in terms of your research in terms of your work in your lab? Can you tell us a little bit about, about what you're working on now, or what you're looking forward to working on?
Teresa Gray
Well, one thing on the horizon that we're quite excited about is with our Black conversation club, it has had such a great reception, and the participants are so thrilled to be there, that we really want to dive deeper, and take a look at what makes this group so special. And so we're ramping up now, hopefully we'll be starting soon. I'm partnering with Jamie Azios, who's in Louisiana, and her expertise is in conversation analysis. And so we're teaming up to start looking at the Black conversation club, to look at the discourse and try to figure out well, what are the themes? What is the secret sauce? What is the special sauce that makes this group so powerful?
Because I think, you know, when when we have the when you know, when you have data that shows that, and we can write about it and share it with our colleagues, I'm hoping this will inspire and give more of a foundation platform for our colleagues to start groups like this. Because if you have a research paper out there, it's something to hold on to. And it's something to really say like, look, this is effective. And it's worth it's, you know, it's so meaningful and valuable that we should be starting groups like this and other places as well.
Lyssa Rome
Absolutely. I agree. And I really look forward to that research. I think it's so important. So thank you for doing that work. Dr. Teresa Gray Thank you so much for your work, and for coming on the podcast to talk to us about it. I really appreciate it. It's been great talking with you.
Teresa Gray
Great, thanks so much.
Lyssa Rome
And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected] Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I’m Lyssa Rome.
Links
Gray Matter Lab at San Francisco State University
Jamie Azios — Aphasia Access Conversations Podcast episode (Second episode)
NAA Black Americans with Aphasia Conversation Group — Aphasia Access Conversations Podcast episode
Chaleece Sandberg — Aphasia Access Conversations Podcast episode
Article: Beveridge, M. E., & Bak, T. H. (2011). The languages of aphasia research: Bias and diversity. Aphasiology, 25(12), 1451-1468.
Article: Gray, T., Palevich, J., & Sandberg, C. (2023). Bilingual Abstract Semantic Associative Network Training (BAbSANT): A Russian–English case study. Bilingualism: Language and Cognition, 1-17.
Open access: https://www.cambridge.org/core/journals/bilingualism-language-and-cognition/article/bilingual-abstract-semantic-associative-network-training-babsant-a-russianenglish-case-study/9B7FD1EDBDAB6FD042CD4714E1548005
Article: Sandberg, C. W., Zacharewicz, M., & Gray, T. (2021). Bilingual Abstract Semantic Associative Network Training (BAbSANT): A Polish-English case study. Journal of Communication Disorders, 93, 106143.
Article: Gray, T., Doyle, K., & Rowell, A. (2022). Creating a Safe Space for Black Adults With Aphasia. Leader Live.
Open Access: https://leader.pubs.asha.org/do/10.1044/2022-0614-black-aphasia-group/full/
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I’m Ellen Bernstein-Ellis, Director Emeritus of the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature Jocelen Hamilton and Theresa Yao from Stanford Healthcare. We will discuss how adapting the A-FROM to swallowing disorders can offer a person-centered approach to assessing and treating a person with dysphagia.
Guest Bios
Theresa Yao is a licensed speech language pathologist at Stanford healthcare and a lecturer at San Jose State University. Her clinical and research interests include head and neck cancer rehabilitation, voice disorders, dysphagia, and aphasia. She is passionate about serving people from diverse backgrounds with communication and swallowing disorders. She was a fellow for life of the Albert Schweitzer Fellowship program, and co-founded the Bay Area's Swallowing Support group. She has been actively volunteering in community groups for stroke survivors who need communication support. She has always been a strong advocate for her patients and profession.
Jocelen Hamilton has practiced as a licensed speech language pathologist for 19 years. She specializes in management of communication and swallowing disorders in adults with head and neck cancer. She began her career at the University of Iowa Hospitals and Clinics, and then joined the Stanford Outpatient Head and Neck Clinic in 2020. She also previously served as a clinical assistant professor for the University of Iowa's Communication Sciences and Disorders department with a focus on supervising graduate students and helping individuals with strokes and brain injuries. Her current clinical interests center around the development of frameworks to facilitate whole person care for individuals with swallowing disorders.
Listener Take-aways
Think creatively about how to apply the A-FROM to other communication disorders, like swallowing Learn how dysphagia can impact the participation, environment and personal domains Consider some PROs that help to capture the impact of dysphagia on quality of life of both the patient and the caregiver Explore some ways to adapt EMRs to incorporate A-FROM or Swal-FROM into your daily notesShow notes edited for conciseness and clarity
Ellen Bernstein-Ellis
So I'm excited to have both of you here today. Thank you and welcome, Theresa.
Theresa Yao 00:55
Thank you, Ellen. I'm glad to be here.
Ellen Bernstein-Ellis 00:57
And Jocelen you too.
Jocelen Hamilton 00:59
Yes. Thank you so much for having us.
Ellen Bernstein-Ellis (Interviewer)
Welcome both of you, again, to this podcast. And as our listeners get to know you, we like to open with a fun icebreaker question. I'm going to pose two different questions that you've selected for today. So, Theresa, let's start with you.
I guess for full disclosure, I want to admit that, I will share--I don't have to admit, I am sharing that I had the honor and pleasure of being your supervisor at Cal State East Bay in the Aphasia Treatment Program (ATP). So I know that may come up today. I just want to let our listeners know that we've known each other for a while. I have been really fortunate in that relationship and seeing you emerge and thrive as such a wonderful contributor to our field.
So Theresa, could you please share one experience or role that has been meaningful to you as an aphasia ambassador?
Theresa Yao 03:22
Thank you, Ellen. It was great experience when I was in the Aphasia Treatment Program at Cal State East Bay. So that's actually one of the experiences I wanted to share as an opening, because I was at the Aphasia Treatment Program as a co-director for the choir, Aphasia Tones. And that was one of the best memory in my life. And I remember one time, one of our members who had more of a severe expressive aphasia, and usually has minimum verbal output, and we all know him. But whenever he starts singing, Can't Help Falling in Love, this particular song, you can hear that those beautiful words just came out right out from his mouth, fluently, beautifully. He was always so happy every time that he heard the music, and he just enjoy singing along.
That was just a really amazing moment for me to realize that people with aphasia with minimum verbal output, they can still enjoy and participate in choir, and can still communicate that way. It's just showed me how powerful it was to use the Life Participation Approach to Aphasia. And in our choir at that time, we have all different levels of severity. All members join together, and then they all enjoy and engage in this choir experience. So that's really meaningful. Whenever I think of LPA, I think of him, I think of this song, and I think of Aphasia Tones.
Ellen Bernstein-Ellis 04:54
Thank you for sharing that. And Theresa, it was wonderful to have you as a co-director. And see you step up to the challenge of leading the choir. And you're right, we really have a strong motto of participation at every level. And you really worked hard to make sure that happened. So thank you for sharing that. And yes, that's one of my favorite topics, so I loved hearing about that.
And Jocelen, I'm also excited to ask you to share with the listeners something about one of your experiences. So would you like to share an Aphasia Access, favorite resource or moment? What comes to mind for you?
Jocelen Hamilton 05:28
Yes, well, this is really neat for me to be on this podcast, because it is this podcast that is a favorite of mine, and a major “aha” for me.
Ellen Bernstein-Ellis
Well, thank you, just thank you.
Jocelen Hamilton
I worked with patients with head neck cancer for about nine years. I then did a major shift and then worked in a graduate training clinic at the University of Iowa. And during that time, previously, when I was at the hospital with a very heavy caseload and working with individuals with dysphagia. And so then switching over and working with individuals with strokes and brain injuries, that was much more communication focused.
And I had this caseload I was taking over with the graduate students and learning about all the current treatment principles and treatment options and all the research that had been developed. It had been probably close to 10 years since I had worked regularly with individuals with neurogenic communication disorders.
I had knew nothing about LPAA. I knew nothing about Aphasia Access, the organization. And I was thinking about this recently, of how I even came across it. But I think probably I was searching one of these treatment modalities, and a podcast came up. So I listened to some of the other podcasts and I was like, oh my goodness, this totally resonated, LPAA. And the podcasts and other resources through the website, totally resonated with me, and helped me better understand what my frustration was within an impairment only based approach, which was in my training and my background, and things like that, to like see a whole different way. So I learned as much as I could. And I tried to share all of that with my students, we were all learning together of how to implement this. So it's really neat to now be a part of this podcast and participate.
Ellen Bernstein-Ellis 07:32
We're so glad you agreed. And I just want to thank you. If there was ever a wonderful plug for membership to Aphasia Access, I think you just gave it. Thank you so much. for that.
Well, let's dive in a little bit more to our topic of the day. We're going to be talking about how and why you both decided to adopt the A-FROM or the Framework for Outcome Measurement of Aphasia by Kagan and Simmons-Mackie to your work with head and neck cancer patients. So I know we usually focus on aphasia, but we're taking this really important tool and talking about how you adapt it. So many listeners are, of course already familiar with the A-FROM. But can you briefly describe the social model framework for our listeners?
Theresa Yao 08:16
I can start with just a brief introduction. I think everyone, if you're listening to this podcast, you are already very familiar with A-FROM, which is based on the World Health Organization's ICF model. They address a few health and social domains such as body structure, function, activities, participation and contextual factors like personal and environmental factors. And like Ellen mentioned before, Dr. Kagan and colleagues, adapted this ICF model to create a very user-friendly framework for the outcome measurement in aphasia. And this becomes the Living with Aphasia Framework Outcome Measures the A-FROM and it has the domain of aphasia severity, which is the body function or impairment level, and then also participation, environment, personal factor. So these are the core concepts of the LPA approach. Thats what we are based on using this A-FROM to adapt it to this Swallow-SWAL-FROM, we call it. The Living with Swallowing Difficulties framework of measures.
Ellen Bernstein-Ellis 09:22
So let's talk a little bit more about this. Jocelen, do you want to share your story as an SLP and how you came to introduce the A-FROM into your work at Stanford in the head and neck cancer clinic?
Jocelen Hamilton 09:37
Sure. So after about a year and a half of working with individuals with aphasia and applying LPAA and using the A-FROM with clients, I then changed gears back to working with people who had neck cancer and we moved to California and I joined the Stanford team and I was back into primarily working with individuals with dysphagia. I just kept thinking about how can I take this model the A-FROM and apply that to working with individuals with dysphagia.
How I would previously use the A-FROM is that Venn diagram. I would just draw it on a piece of paper and start writing my notes on that as I was maybe doing an intake or working with a client. I started doing some of that model just in my note taking and looking at these different domains that might be impacted.
And this was just kind of over a series of months, and even a year, where I was thinking about how to apply this and shared it with my patients. Here are some of the things that I'm seeing and what you're sharing with me that shows your participation is being impacted.
Then I ended up talking with our director, Heather Starmer, about an idea of a project—like how can I move this ahead. Theresa had recently joined our team and Heather said, you might want to talk to Theresa about that. She might be interested in doing a presentation on this. And so it was great, because Theresa and I had not yet talked about our aphasia backgrounds together. It was really neat to then work together and begin to apply this with more of our patients. Initially, we kind of struggled with what the environmental domain look like for somebody with dysphagia. And it was neat to talk through different cases with each other to see how it could apply. And then that's where the Swal-FROM came from.
Ellen Bernstein-Ellis 11:39
Wow, that's wonderful that the two of you were at the right place at the right time. And I always feel that the expression “stronger together” seems really fitting in this situation. But Theresa, do you want to share how you brought a life participation perspective into your work at Stanford?
Theresa Yao 11:57
Yes, sure. Because I've always been a big fan of the ICF model. When I was a student clinician in Aphasia Treatment Program, I learned so much from this model, from LPAA, and from Ellen, you. And also, of course, our members in our Aphasia Treatment Program. And I just could see the huge benefit from the LPA approach in the client's life.
So that's why once I started working in real clinics, I always think about this model. And when I started in at Stanford, I started working with the head neck cancer patients. I just feel like so many patients, they live with long term dysphagia, or a sore throat because of the neck cancer treatment they had. And they sometimes just can't get rid of it. They have to live with it. It's just like aphasia. They live with aphasia. And then it just clicked. I just think that it's pretty similar to the situation that you're living with aphasia, and it's that same impact on patients quality of life, on their participation.
Then I just started thinking, maybe we can do something with this model to help our patients. And then, of course, Jocelen was there, and then we were just talking about her experience with aphasia treatment and LPAA. And we just clicked. That's why we came up with this (ASHA) presentation, and this idea of how to adapt this A-FROM to our Swal-FROM. And then also, we're talking about this because I also started a support group because I feel like people wanted to get connected. They wanted to engage like aphasia group. They wanted that community to be able to participate, to be able to share. So that's why I think this also helped me to try to initiate this project, this group, so that we can help more people so that they can, they can help each other.
Ellen Bernstein-Ellis 13:56
I really love that you saw the power of group therapy, and you then were able to bring it into a different treatment arena. I really don't remember hearing too much about separate support groups for people with swallowing disorders. I don't know how common they are. But it sounds wonderful that you started one, Theresa. So very exciting.
What do we know about the incidence of dysphagia in stroke survivors, and then people in skilled nursing, and from there, head and neck cancer? The reason I ask because I think there's overlap. I mean, you're seeing the dysphagia in head and neck cancer, but we know that it occurs frequently. Do you have any numbers to share about the incidence in stroke survivors?
Jocelen Hamilton 14:39
Yes, so it's about 45% of individuals with strokes experience, some degree of dysphagia and there's been research that's shown 40 to 60% of older individuals in nursing homes have dysphagia. There's even some research out there that one in 25 adults will experience dysphagia. Then when we look at individuals with head and neck cancer, and this could be on the lower range, but one of the particular statistics is 45 to 50% of individuals with head and neck cancer experience dysphagia.
Ellen Bernstein-Ellis 15:11
The importance of considering the whole person (for dysphagia tx) is really going to affect a lot of people that we might be seeing as therapists. And the two of you saw that there was a strong impairment focus in dysphagia management. Can you give an example?
Theresa Yao 15:27
I can talk a little bit about this. When I was in grad school, I know that most of the things we learned was how to identify the impairment of dysphagia. We learned all kinds of treatments and exercises for dysphagia. We learned like how to modify diet, how to look for aspiration, penetration. Almost everything we learned, and also what we've been practicing in our clinical practice are heavily focused on the deficit and impairments. That's basically how we trained to assess and treat the physiological changes or the deficit. It just, to me, sounds like it's really technical.
I recently just look up the ASHA NOMS, the National Outcomes Measurement System-- that's what we usually use as judgment of whether the patient is making progress or not. They use this particular functional communication measures to see there's like different levels. If you're really looking at this national measurement system, you can see that the wording and the definition of each level is pretty much impairment focus. They mention diet level, safety, efficiency of swallowing, compensatory strategies, or cues, etc. So these are really heavily focused on impairment, but you don't really see like things that relate to participation, quality of life, environment, and those factors. So the consequences that if all the clinicians are just looking at the impairments and not looking at other factors, then you are missing a lot, you're not treating the whole person.
Ellen Bernstein-Ellis 17:11
Well, that's perfect, because that leads me to my next question. Why is it important to go beyond the impairment level measurement with dysphagia?
Jocelen Hamilton 17:24
I would say, because dysphagia is more than a physical difficulty. That's our name for that physical impairment. But it influences more, just like we know, with aphasia, that it's not just how much they can say, what they understand in the different modalities, but how a change in this function in the body influences everything.
So one of the analogies that I can relate to, that I've heard before in terms of looking at accessibility, has to do with like, physical impairments. So if somebody is paralyzed, they can't move their legs, well, the physical therapists are going to look at their legs and see the range of motion, their strength and all of that. But they're also going to think about how are they going to get into their house? And how are they going to move around?
Well, sometimes what can happen with dysphagia, as Theresa already talked about, we're looking just at how does that epiglottis move? What is the airway invasion like? But then are we going to talk about well, what's going to happen? We just had the holiday with Thanksgiving and the holidays now. What are family meals going to look like? I think one of the things that sticks out to me is what would my day to day life and social life be like if I couldn't drink with ease and comfort, I couldn't eat with ease and comfort, if I needed to have special food and special liquids and special strategies? So this impacts so many things within a social realm, and personal realm as well. We'll get into that in more detail as we go. But it's not just about the change in a physical function. How does that influence the rest of our lives? And it really does. There's been research that shows about burden and quality of life and psychological health.
Ellen Bernstein-Ellis 19:08
Well, this really hits close to home for me. I'm going to share with our listeners a personal story, because I've always been very passionate about our field and an advocate for speech language pathologists, but being on the other side of the table, when my husband was diagnosed with terminal cancer, did nothing but increase my own respect and appreciation for the role we play in supporting our clients and their loved ones.
Through this process, specifically with dysphagia, and I want to give a shout out to my husband's speech pathologist at Stanford, Heather Starmer, (and another congratulations to her because she just was made a 2023 ASHA fellow), but I'll just always remember the day that we came in. I know that Heather was set with her treatment plan-- I could already guess what we needed to do for the day. And that plan went out the window because we both signaled, Steve and I, that he was just feeling an increasing burden of trying to manage all of the home tasks we were supposed to do for both PT and speech, and it was just really impacting how he was feeling. And so instead, Heather focused on the personal impact and the quality of life issues that we were bringing up. Steve wanted to be compliant. He wanted to be the best patient there was. But she really listened to him carefully. She brought her best counseling skills to the table that day, and helped us come up with a plan that we could manage in a way that would help us sustain his quality of life as best as possible.
So I really saw, personally, I mean, I saw day in and day out how his dysphagia from his head neck cancer really impacted, hugely impacted, his participation with our family, and his quality of life. I am grateful for this work that you're doing and the passion you feel for looking at the whole person as you assess and treat dysphagia. And thanks to you, I've been reading, since dysphagia is not usually in my wheelhouse as much these days, but thanks to preparing for this particular episode, I was able to read some articles by Rebecca Smith and her colleagues that showed me that there's some amazing work being done looking at this whole topic, so thank you for that. Okay, and taking a deep breath, because that's a story I've been thinking about for quite a bit.
Back into our next question. What is the speech pathologist’s role in assessing and addressing health related quality of life and the associated mealtime quality of life? That seems to be talked about a lot in the literature right now. Jocelen, is that you again?
Jocelen Hamilton 21:57
I'm glad you mentioned Rebecca Smith's work. There are actually three papers, I think, that that group, she and colleagues, put out in 2022. And specifically, I'll share a few quotes from their paper The True Cost of Dysphagia and Quality of Life: The Views of Adults with Swallowing Disability, but in a way, there's a call to action, and she's not the first to mention it. But for us to include social participation, and their overall well-being, as part of our dysphagia intervention. To make that routine, and then to also ask questions: How are you doing? How are the holidays? How are these social settings with eating? I like to ask patients and their family members, and ask them separately, not meaning like individually, within the same session: Are you participating in doing this, the same things that you did before your diagnosis? Or how is that looking? Are you going out to eat as much? What do you miss now that is different and you're experiencing changes in your swallowing.
And it's interesting, because sometimes the partner will say that they miss going out to eat, and they need to navigate feelings like, “Well, I don't feel comfortable eating this in front of my loved one who has difficulty swallowing. I feel conflicted about I get to eat ribs, and they don't.” Those kinds of things. The importance of eliciting these stories, so we can really see what are their challenges, because then we can, like LPAA teaches us, we can engage in this creative problem solving and how we can help navigate through some of these challenges. I think those are a couple of important things that we can look at to support people.
Ellen Bernstein-Ellis 23:45
Thank you. And I just wanted to let our listeners know that we're putting all these references into our show notes. I took some from your ASHA presentations that I attended. So those will all be cited in the show notes.
Well, to expand to the participation, environment, and personal domains, you started to think about using patient reported outcomes or PROs for assessment. Why don't we go through the domains and discuss potential tools and interventions to fill out this framework a little bit more. So what might it look like if you consider participation?
Jocelen Hamilton 24:24
When we're looking at participation, we're looking at these meaningful activities may or may not involve oral intake, but looking at their current levels of participation compared to their pre cancer status. So how often, and in what ways, is someone with swallowing challenges participating? I kind of already talked about that a little bit. And how are the family members doing?
Here's one of the interesting things that I've had patients share here. Sometimes, one of the swallowing strategies that a patient needs to complete is a purposeful throat clear, and a re-swallow, or some patients do naturally their throat clearing, or maybe they're coughing when they're eating and drinking. This is an area where it calls attention to them when they're doing this. And then during the pandemic, we were all super hyper aware is somebody clearing their throat? Is somebody coughing? I've had some patients where they really don't feel comfortable because it calls attention. And people ask, how are they doing?
And also, another challenge being that when swallowing is hard, talking and swallowing is extra hard. When swallowing is challenging, most people need to just do that, where we take for granted that meals are a very social time. So some of those issues can be really challenging. There's also some individuals where their difficulty with swallowing has to do with loss of the bolus coming out and so there's almost changes in appearance, where they may not feel it. Their lip, their chin might be numb, and they don't know that liquids are dripping out, or they have a piece of food sitting there. So, they might be hesitant to go out and participate in different social settings. Even sometimes we have patients where they don't feel comfortable eating with their own family members, where they will eat completely separate from their spouse.
Ellen Bernstein-Ellis 26:28
I am just really struck again about the overlap of some of the things in your head neck cancer patients with clients I see with aphasia. It’s really striking. So should we take a moment and discuss how this might look if you consider the environment?
Jocelen Hamilton 26:44
I really didn't address a PRO at all.
Ellen Bernstein-Ellis 26:46
Oh, it's not too late. We can still do that.
Ellen Bernstein-Ellis 26:52
Why don't you go ahead?
Jocelen Hamilton 26:55
Sure. Okay. So we're looking in this interview, right, like gathering information, learning how these things are challenging for them. For patient reported outcomes, PROs, Theresa, and I both looked into different ones. And oh, this one has these questions. And this would fall within this domain. So I'll touch base on a few of them here. And then some of them, they have questions that actually apply to all of the domains.
So for these, there's one the Swal-QOL, this is probably the most broad in terms of looking at all of the domains that are within this Swal-FROM. It has 10 different quality of life concepts that it has specific questions for. So for this one, there's one subset that's all about social functioning. Some of the questions, they’re rating from either strongly agree five point scale to strongly disagree, One of the questions, for example, is “I do not go out to eat because of my swallowing problem.” That really tells you where they're at with that participation, or “Social gatherings like holidays or get togethers are not enjoyable because of my swallowing problem.” So that really hones in on that challenge.
Within our specific area of practice with individuals with head neck cancer, there's a scale called the Performance Status Scale Head Neck Cancer, PSS-HN. Now you might think, how might I use this? I encourage people to be open minded, even though this wasn't validated. And some of these are not validated on individuals who have dysphagia from a different cause other than head neck cancer. It doesn't mean that you can't use it as a way to gather information, engage, and perhaps re administer.
I'm also a big fan of, as people fill this out, having a conversation about their responses as they go to gather information. But with this, the Performance Status Scale, there's a specific rating scale about public eating. So zero means always eats alone. And 100 is no restriction of eating for any place food or company. So they would eat out at any opportunity. Where in-between might be one point on the scale, “eats only in the presence of selected persons and selected places”, or they would eat out but there would be another option, “eat out, but be more selective about the diet textures and things they would consume in a social setting”, which is common. Some individuals will specifically choose different foods when they're when they're in a social setting.
There's also another PRO, the Dysphagia Handicap Index. So with this one, it's a 25 item questionnaire and it does specifically look at physical, functional and emotional aspects of dysphagia. And so a couple of questions from there that would fit with the participation domain include, “I'm embarrassed to eat in public” and “I don't socialize this much due to my swallowing problem”. Those could give some insight into these areas by selecting some of those questions.
Ellen Bernstein-Ellis 30:08
Well, I'm really glad you caught me. I think I was so struck about the overlap that, thank you for coming back and talking about those PRO's. Are we good? Can we transition to the environment next? What would this look like? What does the Swal-QOL look like if you consider the environment.
Theresa Yao 30:29
When you talk about the environment, it can be factors such as the availability of the appropriate food textures, and oral liquid consistencies across different social settings. For example, if you go out to the restaurant, are there any easier food texture that's available for people with dysphagia? And that's one of the environmental factors.
And then there's a new article from ASHA leader that just came out about dining with dysphagia. So that's actually a pilot program from University of Cincinnati that try to help restaurants to expand their menu options so that they have more choices for people with swallowing disorders.
Ellen Bernstein-Ellis
That's amazing.
Theresa Yao
Also, another factor that related to the environment is the attitude and level of acceptance or support the people with dysphagia can get from their family, their friends, or even just strangers in their eating situation. So just like Jocelen mentioned, if you're coughing or clearing the throat, what the reaction from other people will be like, -- if they're supportive, or if they're not so. Sometimes these factors can make a patient uncomfortable eating out because of those environmental factors. And then also, the attitude from people around usually can be impacted by culture. Which type of textures they prefer to consume, and how they consume. If you go to a different type of restaurant, they may have different types of food textures, that are specifically for that culture, so that's also another factor.
And then also, on the broader spectrum, is the attitude from the healthcare professionals or the public, because the attitude from healthcare professionals is basically, because dysphagia is invisible, and when you are in the hospital, not everyone can see it. If you have leg injury or arm injury, people can see it. But if you have dysphagia, you can't see it. And then when the health care provider is, prescribing your pills, and if you can't swallow, how can they take the pill? They probably are not aware of this, this type of disability, so they may not prescribe you the right pills.
These are the things that we can consider as environmental factors. And of course, even larger scale, there's health care policies, the service systems, that may impact the people with a dysphagia too, because insurance may not pay all the dysphagia services, or how often can people get dysphagia support or service? So those are all the environmental factors that we may consider.
Ellen Bernstein-Ellis 33:21
I think the importance of this framework is helping us as clinicians to continue to think just broader and more widely about what's impacting the person in front of us. I mean, wow, you are giving us a lot of factors, from the very personal to the broader social policy. And I want us to take a moment and also talk about personal factors, that whole domain.
Theresa Yao 33:41
Personal factors can also be very, very important. And a lot of things can be involved. So we know that the person was dysphagia may not be the same person, have the same hobbies or same traits, as before their treatment. So that may cause anxiety, or they may feel embarrassed because of their eating habits, or the change of their eating habits. Because we know that eating and drinking is very individualized. Some people, if they're born as a slow eater, they probably are okay with their dysphagia diet or if we ask them to eat slowly and take smaller bites, that's totally fine. But if some people are born as a fast eater, they will have a huge challenge with, if you give them the strategy to eat slow, taking small bites, because that's just not them anymore. They just feel like they're a different person and then they feel disappointed or frustrated if they can't eat as fast as they used to.
And I always share this in my clinic. I see two patients with similar procedures. One person can feel really happy with their diet. They feel okay because they're always eating soft foods or soups. And then another person just with a little bit of impairment of mouth opening, they feel like it's just really frustrating because they can’t bite their sandwiches and burgers. And that just makes a huge difference. But if you're only looking at their swallow study, it's the same, they probably don't have any major impairment, but the impact on the quality of life on their participation, environment, and also personal factor. It’s so different. So that's why I think considering a personal factor is really important.
Ellen Bernstein-Ellis 35:38
So you're giving us examples of the things we should be thinking about, you're giving us examples of some of the PROs that might help us measure. But if many of the EMRs, the electronic medical records are set up for impairment focused measures, how can you adapt the documentation to include these other domains? That's always a barrier, or can be maybe, not always, can be.
Jocelen Hamilton 36:00
I think sometimes it can be a barrier. If sometimes the entry is just you have to click certain things, there’s not a lot of room for free text. With the EMR that we have, we can have a set template, but we can copy and paste anything in there. So what I did is I took the A-FROM--actually, in the same paper that put out the A-FROM, they put the FROM, Framework for Outcome Measurement, and actually suggest that you could use it for individuals with TBI and called it TBI-FROM.
I took that and put it into a template and have the citation for it there and then added a title. It gives a visual for other individuals reading the note of what I'm talking about. ‘Survivorship beyond body function domain: Dysphagia’s impact on personal, participation, environmental domains’, so I have that as a title. I have it as this set, we use epic, so I can do dot phrases (Smart Phrases). I can drop that into a note. And then as I go through and document, I have the subtitles of body function, participation, environment, personal factors in as I'm collecting this information. That's how I can organize my note.
I don't do it every single time with every single patient. Sometimes some of our sessions are more impairment focused, like we need to for safety reasons focus on this. Sometimes it's more a whole session all about how are they doing with their personal domain? I had a patient in the clinic today, and he is depressed, and we just had this quick talk of, “Okay, what do we need to do? Can you talk to your primary care doctor? This is common, many individuals with head neck cancer have depression.” But I'll organize my note, getting back to the notes, with those subtitles and putting the information in there. It also is a cue for me, because I keep needing cues and reminders to come back and broaden that focus, instead of always being in on the impairment and you monitor, document, and then monitor, as I'm reviewing back on their notes to see how they're doing across these different domains.
Ellen Bernstein-Ellis 38:19
That is a beautiful example of how you can adapt something. I'm sure a lot of our listeners really appreciate you describing it so carefully, and hopefully will inspire some of them to see what they can do to adapt their EMRs.
A little bit earlier, you mentioned the importance of getting perspective from both the client and the care partner. How does the caregiver or care partner experience fit into the Swal-FROM?
Theresa Yao 38:47
Caregiver or care partners, they play a really important role in this whole journey with individuals with dysphagia. And I'm sure Ellen, you probably were in that role before. Most of the time, it's the caregiver making the meals for the spouse. Making the meals for the patients with dysphagia can be very challenging. Because just the texture, you have to take care, and the taste. I have caregivers talking to me. They told me that they tried their best to make all the foods but the patient didn't eat at all or didn't like it at all. Then they feel super frustrated. These are all the challenges that the caregivers may face.
Dr. Samantha Shune and colleagues, they did a lot of work on this caregiver burden topic. Their study said increased caregiver burden has been associated with the degree of impact that dysphagia is having on mealtime logistics. Family members also report increased anxiety and fear and frustration, stress, embarrassment and social isolation. So these are very two critical things to consider when we're thinking about whole person care, because we can't just care for one person, the patient. But if the caregiver is also experiencing all the stress, all the anxieties, we also need to consider that factor.
Researchers in Australia, Professor Nund and colleagues, they also pointed out that this specific caregiver burden is third party disability. And it's the consequence of that person's impairment, which impacts the functioning and ability of their family members or significant others. That's why we want us to fit this caregiver experience into this Swal-FROM framework. Just adding the family caregiver in all the different domains to support patients with dysphagia. And caregiver can influence four domains. But at the same time, also, we need to take care of, examine, the four domains of the family member or the caregiver--going to check their participation, their environment, and their personal factors. Those are really important, because their health and well-being can be affected by being in the journey of taking care of people with dysphagia. So they're super tied closely. That's why we wanted to fit this framework as well.
Ellen Bernstein-Ellis 41:21
One of the clinical tools I've learned is available is a PRO measure called the CARES, developed by Shune and colleagues, and we'll again put the citation in our show notes. Theresa, could you describe that a little bit more?.
Theresa Yao 41:37
So this is a wonderful screening tool that developed by Dr. Shune and colleagues. It’s full name is called Caregiver Analysis of Reported Experiences with Swallowing Disorders. It has 26 items in the questionnaire. And then there's two parts that explore a different aspect of dysphagia’s impact on the caregiver. One is a checklist on the behavior and functional changes, and one is a checklist of the subjective caregiver stress. Basically, it's a simple yes/no questionnaire. You can give it to the caregiver and they can just circle yes or no. Then from that, you can figure out what area you may address as an SLP. Or you may want to refer them to a specific team or professionals to address that, because we have limited scope of practice, we can't do everything. But if we can help them to identify the issue and then point them in the right direction, to the right team. That may help a lot.
Ellen Bernstein-Ellis 42:43
In your ASHA presentation you also mentioned the Rome Foundation is a resource and another website that offers skill building around managing serious illness conversations. We're going to put both of those resources into the show notes for people, but we don't have time right now to go into them fully.
But Jocelen, can you address or share what benefits you've seen by adopting this framework? Does it help with goal setting? Does it help with acceptability of recommendations? What have you seen?
Jocelen Hamilton 43:12
I think it's helped me and I feel like it's helped patients and our families have a little more clarity about, okay, these are the areas that are challenging. And again, I'm a visual person, so if I write it out with them, and they're telling me things, and I'm explaining, I get excited about the diagram, and I'm like, you know, see, this seems like an area of challenge. Is there something that you're interested in doing in this area? Are you willing to talk with another person who's gone through this?
So I feel like it really can give clarity, I think, for myself, what you know that A-FROM does, and Swal-FROM now is to not, I professionally can get really hung up on the impairment. And I can't always change that, right? We can't always change it to the degree that we would like. Of course, we would like everybody to have complete resolution, right? And so there can be this frustration and powerlessness with that. And obviously the patients and our family members can be experiencing that also.
And with this broader view, we can say but here's what we can focus on what can we do to have you participate that would make you feel better? What can we do that would help you with your personal feelings? So I feel like it addresses things that matter and we can have more conversations about how is their day to day life being impacted? What are some small steps we can take in a direction that might help them and their families.
Ellen Bernstein-Ellis 44:43
That's beautiful. Thank you so much, Theresa and Jocelen. It has been a pleasure and I’ve learned so much from both of you, listening to you apply this framework and look deeply and carefully at quality of life for people with dysphagia. I really appreciate it. Is there anything else you want to add?
Theresa Yao 45:03
I just wanted to add a little bit. So I think it's really important as clinicians to listen to our patients and caregivers, because we need to learn from their experiences, their perspective. And, like we mentioned dysphagia is invisible. I wanted to share one of the quotes from one of the dysphagia support members. He says, “dysphagia is a label you carry with you inside.” And that's really just so true, because it's hidden. If you go outside, people see like you what you can walk, you can talk, but they don't know that this disability is hidden inside. And I think it's so important to address not just the impairment, but also listen to the patient's perspective. And then help them to address all the domains. I always think that you become a better clinician because what you learn from your patient. So that's all we need to do.
Ellen Bernstein-Ellis 46:08
I can't think of a better way to close this interview. Even though I could ask you several more questions, we could be here for another hour, I just want to thank you for bringing that patient's voice, a client's voice, into the discussion today, so beautifully. And let's end on that note of really learning from our patients’ perspectives. So I want to thank you both. And I want to thank our listeners for listening today. And for the references and resources mentioned in today's show, please see our show notes. They're available on our website at www.aphasiaaccess.org. And there you can also become a member of our organization.
Jocelen Hamilton
Yes, yes, Do it!
Ellen Bernstein-Ellis
Thank you! Browse our growing library materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]
For Aphasia Access Conversations, I'm Ellen Bernstein-Ellis. And thanks again for your ongoing support Aphasia Access
Resources and References
Ariadne Labs: Serious Illness Care Program
https://www.ariadnelabs.org/serious-illness-care/serious-illness-care-program/
The Rome Foundation
https://theromefoundation.org/
Chen, A. Y., Frankowski, R., Bishop-Leone, J., Hebert, T., Leyk, S., Lewin, J., & Goepfert, H. (2001). The development and validation of a dysphagia-specific quality-of-life questionnaire for patients with head and neck cancer: the MD Anderson dysphagia inventory. Archives of Otolaryngology–Head & Neck Surgery, 127(7), 870-876.
Hamilton, J., Yao, T. J. (2023). Framework to Guide Whole-Person Care for Individuals with Dysphagia. 2023 ASHA Convention, Boston, MA.
Hamilton, J., Yao, T. J. (2022). Shifting to Whole-Person Care for Head Neck Cancer Survivors Living with Dysphagia. 2022 ASHA Convention, New Orleans, LA.
Hickey, E. and Douglas, N. (2021) Person-Centered Memory and Communication Interventions for Dementia: A Case Study Approach. Plural Publishing, Inc.
Howells, S. R., Cornwell, P. L., Ward, E. C., & Kuipers, P. (2021). Client perspectives on living with dysphagia in the community. International Journal of Speech-Language Pathology, 23(2), 201-212.
Kagan, A., Simmons‐Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, S., ... & Sharp, S. (2008). Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention. Aphasiology, 22(3), 258-280.
List, M. A., D'Antonio, L. L., Cella, D. F., Siston, A., Mumby, P., Haraf, D., & Vokes, E. (1996). The performance status scale for head and neck cancer patients and the functional assessment of cancer therapy‐head and neck scale: a study of utility and validity. Cancer: Interdisciplinary International Journal of the American Cancer Society, 77(11), 2294-2301.
McGinnis, C. M., Homan, K., Solomon, M., Taylor, J., Staebell, K., Erger, D., & Raut, N. (2019). Dysphagia: interprofessional management, impact, and patient‐centered care. Nutrition in Clinical Practice, 34(1), 80-95.
McHorney, C. A., Bricker, D. E., Kramer, A. E., Rosenbek, J. C., Robbins, J., Chignell, K. A., ... & Clarke, C. (2000). The SWAL-QOL outcomes tool for oropharyngeal dysphagia in adults: I. Conceptual foundation and item development. Dysphagia, 15, 115-121.
Nund, R. L., Scarinci, N. A., Cartmill, B., Ward, E. C., Kuipers, P., & Porceddu, S. V. (2016). Third-party disability in carers of people with dysphagia following non-surgical management for head and neck cancer. Disability and rehabilitation, 38(5), 462–471. https://doi.org/10.3109/09638288.2015.1046563
Shune, S. Moving beyond the isolated swallow: Dysphagia in the context of the shared mealtime. https://dysphagiacafe.com/2015/03/19/moving-beyond-the-isolated-swallow-dysphagia-in-the-context-of-the-shared-mealtime/
Shune, S., Davis, C., & Namasivayam-MacDonald, A. (2021). Contributors to Dysphagia-Related Burden Among Spousal Caregivers of Stroke Survivors. Archives of Physical Medicine and Rehabilitation, 102(10), e65.
Shune, S. E., & Namasivayam-MacDonald, A. (2020). Dysphagia-related caregiver burden: Moving beyond the physiological impairment. Perspectives of the ASHA Special Interest Groups, 5(5), 1282-1289.
Silbergleit, A. K., Schultz, L., Jacobson, B. H., Beardsley, T., & Johnson, A. F. (2012). The dysphagia handicap index: development and validation. Dysphagia, 27, 46-52.
Smith, R., Bryant, L., & Hemsley, B. (2023). The true cost of dysphagia on quality of life: The views of adults with swallowing disability. International Journal of Language & Communication Disorders, 58(2), 451-466.
Smith, R., Bryant, L., & Hemsley, B. (2022). Dysphagia and quality of life, participation, and inclusion experiences and outcomes for adults and children with dysphagia: A scoping review. Perspectives of the ASHA Special Interest Groups, 7(1), 181-196.
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Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.
I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature Paula Valente and Dr. Assunção (Maria) Matos from the Portuguese Institute of Aphasia (IPA). In this episode, we'll be discussing Paula and Maria’s role in building three dimensional social, LPAA in Portugal from the ground up.
Biosketch:
Paula Valente is a Speech and Language Therapist, social entrepreneur and responsible for the creation of IPA. She realized that there are important gaps in the therapeutic interventions that are offered to the person with aphasia in Portugal. With the support of partners in Portugal and in another countries, and with a team consisting of a speech therapist, a psychologist, a social worker and volunteers, Paula is convinced that the path will not be easy, but it's possible.
Dr. Assunção (Maria) Matos is a Lecturer at the University of Aveiro in Portugal. Her work is grounded in the WHO-ICF model and social, LPAA approaches to aphasia rehabilitation. As one of Paula’s teachers, she influenced the development of the IPA and is a crucial partner in the innovative programming that they offer.
Take aways:
Shift to Social Approach: SLPs in Portugal moved from a medical model to a social approach in aphasia intervention, realizing the limitations of traditional speech therapy alone. Comprehensive Support Program: EPA in Portugal offers a wide range of services, including therapy, psychology, and caregiver support, aiming to enhance the lives of people with aphasia and their families. Limited Services in Portugal: EPA is the sole organization providing such extensive aphasia support in Portugal, serving the entire country, with an emphasis on online services to reach distant regions. Professional Training Focus: Assunção Matos emphasizes holistic training for speech-language pathology students, preparing them for diverse practice settings by exposing them to various intervention approaches. Fundraising Challenges: EPA faces fundraising challenges in Portugal due to limited access to funds and philanthropic support. To sustain their services, they generate revenue through clinical services, therapy programs, online courses, and book sales. They also have associates who contribute annually. Despite challenges, they are working to demonstrate the effectiveness of their approach to gain government support for sustainable funding.Interview Transcript:
Jerry Hoepner: Well, it is my privilege today to have a conversation with Paula and Maria. So, we're going to just begin talking about the programming that they've started within Portugal. And I'm just really excited to have this conversation. I think this is a unique conversation for aphasia access. Because we're really get to talk about the process of building a program within a country from the ground up from scratch. So, I think we're used to stepping into this process partway through and again. This will be a really fun conversation. So welcome, Maria and Paula. And yeah, welcome to Aphasia Access.
Assunção Matos: Okay, thank you. Thank you, Jerry, for the great opportunity of being here with you, sharing our experiences and our dreams. It's an honor to be here with you. Honestly, thank you.
Paula Valente: I make my [unintelligible]. It's the same. Thank you very much.
Jerry Hoepner: Absolutely. I have to say I was really privileged to have some conversations with Maria and Paula at the IARC Convention in Philadelphia last spring. So got the opportunity to meet there. And obviously really interested in learning more about your work and programming that you started in Portugal. So. we were talking just before this podcast about your name, and then you call it the EPA or the I.P.A. I was saying that in a in English we'd probably call that the Portuguese Institute of Aphasia. But I'll let you explain the name a little bit from the Portuguese standpoint.
Assunção Matos: So, IPA is Instituto Português da Afasia the so it's exactly what you were saying in in in English. I.P.A. is known as EPA all over all over the country and it was decided to call the association like this? It was actually it was Paula's decision. Paulo, do you want to say something about it?
Paula Valente: No, we just at a name to our legal name is another one, because in when we did the registration of the organization, we had to choose another name. So, our name is Afasia. It's like, if IPA. Afasia Epaphazia. So, our organization of the legal name is Epaphazia. But the trademark Is Instituto to Portuguese Epaphazia. That was the Portuguese Institute of Fascia. When we choose this name it was a little bit scary, remember, as soon, so I don't know if because we were afraid to do. To tell people this is a big thing we are a Institute is an institute is a reference is something that sounds like very credible. And we want to do that. But at the time it was the beginning, and we were like, I hope this will work. So was like, okay, let's do. Let's do, Let's do this with this big name, impressive name. And what's also a strategic name to show the people that we were doing something with something good, something with good basis and good principles, and the with and impact to the person the people with the afasia. So, we were a little bit afraid at the beginning, but with the responsibility we were taking. But I think it was the right choice.
Jerry Hoepner: Yeah, I agree. I think it's a great name and thank you for filling in a little bit of that background. In full disclosure. There's no way I could pronounce the Portuguese version of that name. So really happy to have you do that? But yeah, this really speaks to that kind of building from, you know, from the ground up from scratch. Paula, I'm interested in a little bit more on that. How did the EPA or the EPA come about?
Paula Valente: Okay. So, I was. I've been a speech therapist since 2008, and I did my practice with a Assunção. She was my teacher in the hospital and maybe she can tell a little bit. She influenced me at the time because when I finish that practice internship, I was convinced that my mission, my life mission, and my professional vocation was to work with people with aphasia in a socio model or in more psychosocial model, because she taught me that in the hospital. So, from there I study about that, I did my master in that field like my master. I'm sorry about my English, so try to understand me, please. My master was about partner training aphasia partner training, communication training. And from there I was convinced that I had to do more to help people with the Aphasia to live better, besides the aphasia I was working at the same time in hospital context, public one. And I was also working in a private clinic with patients with a phase. So, I saw the difference of get to work in more functional and communicative way with the people, with the, with the person, with the patient and his family, and in a medical model. So, I was seeing the differences I was studying, and I thought no, I would love to help the people with the aphasia to in Portugal, because I was also understanding better the public services to this, this to these persons to person with aphasia, and I started to feel that I could do more. Something started to make me dream about a common community program or center and at the time I had to I did the A social internship course, Intensive program training program that give tools that I needed to start making my dream a reality. So, at the time after I did that social entrepreneurship course, I said goodbye to my jobs and I started a pilot project. The name of Pilot project was Aphasia 3D. Because at the time I thought already to work in 3 dimensions, person with aphasia, family and friends and community. So, to achieve a better life with the aphasia I needed to working that 3 levels. So, the pilot project was aphasia 3D was the name but when he I did my pilot project I called was from Zoom at the time she was my teacher, but also she gave me orientation in my thesis master thesis a project and I call, and I talk. I talk with her. We had a conversation about these, and she was a big supporter. So, she at the big since the beginning, she told me. Paula, I am with you and I will help you. I will be on your side. Let's go. So, she was very, very important. Since the beginning, since everything I don't know. So, add in the final of that. Here the pilot project began and we started to invite some people with the aphasia, some family members, some friends of mine to be the social organization. I don't know. How do you say in America. But we, when we, we have to have a group of founders to register our organization to founder organization, we have just say, let me see. I think it's the Board of the Association. Yes, it's like we have the board. We have a structure and we invited people to do that with us. And then, born the organization the ONG EPA institute together the maybe I can now talk more about what we do but maybe someone can explain better how she influenced me to do that, because is also our passion.
Assunção Matos: Well, first of all, first of all, I think I need to do a clarification. My name is Maria. I'm also Assunção, so when Paula is talking about this and some, I'm the same person to say and all other people from other countries, what can I say? I started as an speaking language therapist in the nineties and my first job as an SLP was in a cerebral palsy center with children and their families and indicators and in this kind of center we were very already at the time we were very focused in intervention, on communication. So, it was really common to work with the children, with their family members with the augmentative and alternative communication systems, low high technology. So, this was very common for this population already. So when I changed my job 2 years later, and I went to a central hospital with people with aphasia, my idea of working as an SLP was, you know, focused in communication, and not just in speech or language but thinking about people with the aphasia at the time. The medical model of intervention was the strongest one in hospitals in Portugal, maybe around the world. I'm not sure so when I started working with my patients, I thought I have to do more. This is not enough, so I was not happy about what I was doing, because after months and months of therapy my clients, they were just looking the same. They were not improving their functionality, or they were not doing their lives, as I thought they could do if I did something different. So, I start looking. I went to congresses. I went to the International Society. How many different alternative conferences by the time in the Netherlands, and I started looking, for no one uses AAC with the people with the aphasia So I started also looking for papers, and then I could find Linda Worrall, Aura Kagan, Audrey Holland and I started dreaming. So, policies, EPA is my dream, and I used to say that Paula did what I wanted to do, and I was not able to do because I couldn't just quit my job As she did so, I started at the same time I started teaching in the SLP course and in 2000 the ICF appeared. I'm trying to jump, not to be too boring and everything made sense to me. So, I started looking for different ways of working even at the hospital, and I started bringing the family, bringing the family members to the hospital. I started them trying to train my patients with the total communication approaches. I tried to do my best, because it's not easy in a medical context, you know, to change minds and to change in. That's why, Paula, she's saying she came to me as a student. I was doing this this kind of job. I was trying to apply what I've learned from AAC and children with cerebral palsy, and I was doing some experiences with my patients And also suddenly I met some people in in the Isaac Conference that I told you about few minutes ago and I got involved in a multinational project where we were trying to develop a specific software for people with aphasia to communicate better with a portable AAC device, I can say I'm very proud to be involved in in that project. And so that's how I started. That's how I started.
Jerry Hoepner: That's fantastic. It's just been fun listening to your story kind of a microcosm of things that have happened in other countries, I think, in terms of moving from the sense of the medical model isn't meeting the needs of the people that we're serving. I heard, you know, just a little bit of some of my conversations and everyone's conversations with Audrey over the years so we shift from a very medical behavioral approach to one that is more of a social functional approach. I can just hear those same threads kind of being woven into your stories. And just really, really interesting, I mean.
Assunção Matos: Sorry. Sorry, sorry, Jerry. It's just to say that in Portugal no one was then I know no one was working in this swaying, in a more social approach. And Internet wasn't like it is today. So it was really hard to get access to the papers. But I also remember buying the book beyond the fascia from the connect in London and I got in love about connect. Yes, I still have it here also. And I decided, I said to my husband, I have to go to London, and I decided to go to the connect and see how they were working, and do the training the trainers course that they were that they were well, I was trying. It was hard, but I was trying to do it in a different way, because I could see my patients after months and months of therapy linguistic therapy it wasn't enough, and I felt I have to do something else.
Jerry Hoepner: So insightful. And I think so many people have come to that conclusion about social approaches and the life participation approach. That Doing those impairment-based pieces alone is just not enough right? Not that they don't have a place, but alone. They're not enough. I think it's really great. I was thinking about Paula's thesis on communication partner training, and how that must just sprung out of all of these discussions, and certainly just central to a life participation approach. The other thread that I kind of heard from both of you is this idea of the dream that you started to have to create something to fill this gap? Maria, I like the way that you said that? You know you started dreaming, and Paula made that dream happen.
Paula Valente: Maria knows that I am the crazy, 2 of us is necessary courage conditions of obviously, because as the sun sounds said I was married. But I didn't have children yet. So, at the time I thought, Okay, it's now or never, because soon I will have my family, and it will be very difficult for me to do this kind of choices to quit my jobs. Goodbye, my jobs! No, so it's now, and never. My husband was still in love with me so at the time was easy to convince him that I wanted to do that. I quit my job at that time. For the beginning of EPA. I was doing voluntary work. I did all without receiving anything, so that was not easy. Choice but it was necessary. A little bit of courage and a little bit of craziness like I was. We were doing something that's in Portugal. We don't. We didn't have a big organization behind us or supporting us. So, in terms of giving us the structure or the security to do something. So, It was like doing a house from the 0 from the ground, so didn't have any money at all. So, everything was started from the 0, and it was a little bit scary. And III admit that I was a little bit crazy, but I think and persistence, because the difficulties were, and they are so almost 9 years later it years later, 8 years later, we are here but this is a big adventure, and he in still is
Jerry Hoepner: Courage, persistence, a little bit of risk taking I'm not going to say that you were crazy, but those are things that help you move it along, and I can see now why you so connected with Maura Silverman and the Triangle of Aphasia Project.
Paula Valente: Yes, she was the biggest, when I started. I also. II remember very well to be on the aphasia, because the book, because when I started, my internship gave me the book to read, and I was like I come from the school with a medical model mindset, like language and speech, and she gave me the beyond the feature read this. And let's think about this in your internship. So, when I started to, okay, let's think about these programs. This center I went to connect also was my first experience with the center personal experience. And then I contact there numerous centers around the world, mainly in America, of course, but also some here in Europe and Australia to learn from them, to learn from the programs, to learn about the programs, about the social, the about the business model, how they sustain their activities, how they communicate with the community, how they articulate with another organization. So I did a lot of contacts, and I talk with many people and Maura was one of the most the most easiest person. I don't know how to say that sorry was very available, and she talked and she wrote a letter of support. She was incredible, so that was very important to me at the beginning to start to organize the structure of our programs. I can explain how we work at the moment. what we do at the moment. But I want to say also that many things have changed through the years. We learn a lot with experience, with the errors, with the feedback. That person, either. Persons with aphasia and their families told us so. We learn every year we did changes about the protocols, about the instruments about the programs, about the number of persons that we involve, the number of Anyway, many, many changes were done. And I think we will. We will do that kind of adaptations along the way, because they are very important to achieve our goal better. Okay? So, we have to listen to be aware of the impact, the results. The feedback is very important to getting better. Okay? So, what we do now is, I think our better version of the programs but I think maybe in 2 years we will be doing things differently.
Jerry Hoepner: That makes sense and I think you approach this whole process in the right way by connecting to those people. And you know everything you said about Maura rings true, right that she's available, and she is excited to get me going and to share my knowledge. So why, so I would love to hear about what you're doing right now. I think you said 9 years it's been so...
Paula Valente: We, 1916 was the founding year. I started the pilot project in 2015. So, I quick myself therebefore. So, it's almost 10 years in this adventure. It's all. But the organization is only 8 years. So, when our main objective with our association, our mission is to improve the quality of life of people with the aphasia and their families so to do, that we have to we organize our working 3 targets out all the targets. Population. Okay, audiences. Okay, we work with people we work with. And for people with aphasia themselves we work with and for family members and friends and we have we have to work to the community to a more inclusive and community communication accessible community. Okay, so we have activities actions in the these 3 main, groups. Okay, for these 3 main groups for the people with aphasia and the families we have. Hmm, 2 responses. Okay, we have resources and information we wanted to give them the more resources, more information about the aphasia, about how to leave with the aphasia, how to recover the path that the different teams that are important to them to learn more about what aphasia is And now to leave with the aphasia So we work a lot to offer to Japanese to offer resources and information in our websites in our social networks, with lives in the Facebook, with conversations online, with the workshops, with events, to talk about aphasia, to inform, etcetera. So, we work a lot to give them resources and information free for free. Okay, that's when before EPA, It was very difficult to them to find anything in Portuguese. Okay? In the Internet, or in another ways, in books or in La leaflets, leaflets. Okay? So, they didn't have many choices, many options. So now they have. If they go to our website, to our YouTube channel, to our net, Facebook, page, Instagram, they have videos. They have aphasia friendly videos. They have informational videos. They have testimonials. They have documentaries. They have many things in English that we put legend, subtitles. So, we work a lot in this field of information and resources. Okay at the same time for people with aphasia and families, we develop programs. Okay, you call programs in America and we in Portugal, we don't call that programs but we called like therapies. Okay, it's more the term for us. Your programs for us. We call therapies. We develop different therapies to give responses to the aphasia, the necessities, communication, necessities, and the goals of people with aphasia ask us for help. More concrete, more rehabilitation help. So, at the beginning we were doing only group programs. Okay, with many different types of groups. Okay? But at some point, we saw that was not for some people that was not sufficient because they needed help to communicate better, to develop resources for themselves, to adapt better to aphasia to work some psychology, psychological problems or family problems. So, the group conversational groups, communication pho, functional communication groups, they were good, but they were not, some of them to respond to their particular needs. Okay? And we started to do individual sessions with them also. So at the moment we have like a program, a response to them. So, it's like a service. Okay? That when people with aphasia ask for our help to live with aphasia, to have speech therapy. They want to. They ask us for a specialist. So, they see if a specialist team, so they ask us to help them. So, the first thing we do is an assessment, and the that assessment includes not only the language, the impact of aphasia on the language domain, but also in the participation activities like psychological states, family members, networks social network so we have, we do a global holistic assessment and then we have a reunion. We have a session that we call decision reunion. In that decision reunion we discussed with the person with aphasia in an aphasia friendly way. So, with communication, support to conversation, communication and we show the results. We explain what the evaluation show us and we discuss in in with them their main goals and then we make together a plan and that plan is not only to do things in EPA is not that focus. So, the plan is out. What I can do at the moment to feel better, to achieve my goals. Okay, something, some things they can do with our support. But other things they can do outside. So, we also give them another options. We talk with another professionals or organizations, and we help them to make decisions and go through the process. So, if they want to do something with us, we have only three objectives in the center of the process. So, everything they do they do to achieve the objectives that were clarified in that discussion in that conversation initially and then we start doing. They can do with, not with us individual and group sessions of speech, therapy, psychology, neuro psychology, communication training. All of these approaches are personalized. They follow the pace of the evolution of the person and their needs. And we also and they are all very different. So, some of them do only individual start from start doing only individual sessions. Then they go to the groups. Some of them do only groups, some of them do groups and individual. It depends on their path, their situation, their goals, and the in the continuum of care. So, where they are okay, so with the family members is the same. They are very involved since the beginning, so we will offer to them individual or group sessions that go that will help them in their needs. So, from the beginning and along the way we are always talking with them and give them what they need. So we have also caregiver groups and communication training groups and communication training individual sessions everything to promote adaptation to aphasia, to improve the relationships, the well-being, the success of interactions. We promote also meetings with people with the aphasia, and there, another with them. Sorry. We promote. Provide also meetings with another family members and in in group sessions it makes sense. Sorry about my English.
Jerry Hoepner: Totally makes sense, Paula. Well, you have a just a breadth of services that you offer, and I know those have evolved kind of over the years, but very collaborative, very person centered. It seems like, you've really thought this through. You've obviously brought upon a lot of resources to do that. A couple of things I wanted to know. One is you mentioned those video resources and other resources. We'll make sure that those are available on the show notes, so people can connect and check those out even if like. I watch some of them and just to get a little taste of what they look for obviously, I don't switch Portuguese, but just valuable just to have those resources. The other thing I'm wondering about is what's the area that you serve. I mean because it seems like you may be one of the only collaborative social programs in your area.
Paula Valente: Yes, we at the moment. If you want to say something, please interrupt at the moment we serve. All the country we are. We are not a big country, but unfortunately, people with aphasia in Portugal they don't have many choices, and after the rehabilitation centers or the care the main public centers that in the acute phase they go, they get, they go there, and then they go home. When they go home, the choices to continue the rehabilitation are very few. And we in Portugal we are the only organization that are doing this work, and specifically with aphasia. We people with aphasia. So, we receive calls from all over the country and, but we are in Portugal and that is the second main city in Portugal. So, we have Lisbon. That is the capital, and then we have Porto is another big city, but in North and we are in Portugal. So, we can't see everyone in Portugal, mainly the people that live near us but with COVID we started to do many teletherapy and now we have almost 50 people with aphasia doing online services. So, at the moment, we have also online groups and individual online sessions and consultation sessions that are like a specialty consultation that we do to that families that only want some someone who helps them to decide things to understand what to do next, and that help us help them to decide what to do. So, we do a lot of consultation sessions that are more periodic and we go through. We. We've talked to them through the year to see how things are going. and to give them more information about what they should expect from the rehabilitation, from the therapist, from the communication, and give them psycho education, but also orientate them. We do a lot of that kind of in-service. Okay. So now, we have many people in our presential activities in our center. But we are the only organization in Portugal. So many people from other cities are asking for help and we are trying to go to Lisbon to create some groups and some enlistment. But Lisbon. But it's something that takes time. Okay, so it's another something that will take some time to happen. And this year as soon sound, Maria will start a group also in the university. So, it's something this kind of different points of presential group. Presential groups. I think, will be the next step to give other options to the, to the persons with aphasia in Portugal.
Jerry Hoepner: Wow! What an incredible breadth of services, and literally in in terms of area. I can't imagine serving all of the people with the face that in State of Wisconsin, which is probably smaller than Portugal. So that is that's really incredible. And wow! What a service! And I want to shift gears a little bit and talk about training professionals and students, because I feel like that might be an important step for having a broader network of people that concern people with a phage throughout Portugal. Maria, are you willing to talk a little bit about some of the trainings that you've done with professionals and your connection with the university and training students?
Assunção Matos: Yeah, yeah, I can only tell you about my experience. There are other schools SLP, from my perspective. What I tried to teach my students is a bit of every type of approaches, because in one side, I know that when they go to their practices, they will find some places where the medical model is still very active, so I have to prepare them in order to know how to work with people with the phase in a more linguistic approach. But at the same time, I try to tell them about social approaches and about live participation approach. And II it's not easy, because I don't have much time to do it. But I try, you know, I'm a really big fan of the ICF so I try to prepare them to know how to work according to the ICF and how to work in the different domains the ICF suggests at the same time. We have established the Protocol with the IPA at our university, the University of Avairo. So, my final students, some of them those who want to work and wishes to do their practices in the field. Some of them are going to the EPA for 16 weeks and they do their practices there, and also during that that the time they have to develop an investigation project. So, most times I try to see with Paula we share the needs of the IPA, and we try, you know, to go and to work with the students and try to do some investigation that has an impact for the EPA and for the colleagues who work there. And this is this is great work. At the same time, just to finish me and Paula, we have been doing the SCA. The supportive conversation with adults in Canada and since then, we are doing lots of lots of workshops with the health professionals in many different hospitals. I'm also trying to do some investigation about it, because we don't have it in Porto. Well, so I tried to involve my master students and we are, you know, working together, trying to change minds trying to change the settings in order to people with the face you to leave better from the beginning, when they wake up in the hospital. If they have their health professionals prepared to communicate better with them. We read it from other countries, and which really believe it. So, we are trying also to make some changes and I've started also last year. Doing some SCA work with the other students from other courses. In my university we have nursing students. We have physiotherapists. And we have radiology students. So, at the beginning of the of the year we are doing some online courses to prepare them before going to their practical settings and communicate with the people, with aphasia, or with other communication disorders. So, this is my experience. This is what we are trying to do.
Jerry Hoepner: Such important work I can't imagine. I've had so many kind thought leaders and researchers and clinicians that have guided me in this process, and that it wait so much of that groundwork out. So, I just can't imagine building that from the start. And what you're doing is so important.
Assunção Matos: This year we are planning to start group therapy with people with the face, you know, because I am at the moment I am 100% at university. So I left my hospital and I really miss my patients and I miss, you know, to do the to be an SLP in practice And because there are not many groups in the country, as Paulo was saying. So, we are trying to organize group therapy for people with aphasia, maybe to do also some work with their family members and the idea is to do the group therapy and trying to do some investigation at the same at the same time. Now it's better going to be the challenge for this year for me.
Paula Valente: I just want to say that at the beginning we were offering some workshops and training for the professional health professionals about aphasia, about how to communicate, and other topics that are important from for them to manage better the person with the aphasia since the beginning and we started to see that the health professionals. They don't have time to do training and they don't have money they don't have. They don't want to invest in this kind of training. They want training, but they want that accessible for them so it but the accessible means free without costs and preference in their setting. So, we have to go there to give them the training, because if they have to go some an another place, they don't go. So, where LPA was finding these things and was okay, what we can do. So, one of our works was to find funding programs to fund 2 projects that are, that the main objective is train, the health professionals to communicate. And so along these lines, we did a lot of free training in settings like hospitals and rehabilitation centers, and main mainly financed by those kind of funds.
Assunção Matos: Let me just highlight that we are not doing this training alone. So, we are involving people with aphasia in the training. So, we, me and Paulo, we explore the more theoretical parts and then we have people with the aphasia, with us who are the trainers in, you know, in in practice. And II also would like to highlight that this is something that we have tried from the beginning to involve people with the phase in their family members. our Vice President is a woman with the aphasia we have some family members that belong to the Board of EPA. And we from the beginning. The idea was, as Paula already said, work with them and for them and I think this is something that is really is really important. And it's very, you know, for us it's very good. It makes us feel very good about it.
Jerry Hoepner: Totally agree. And I mean, it is really impressive that the amount of work that we've been certainly important work. And I get the feeling that the 2 of you probably don't sleep a whole lot. You're certainly doing a lot. I don't know a lot of good things, and you're doing them the right way. So maybe I can shift gears one more time. To talk a little bit about the business end of things. cause that's a part of building from the ground up. Would either, if you like to start talking about your model.
Paula Valente: Yes, since the beginning we wanted to be a social entrepreneurship project. So, what is that? We want to solve a social problem that the public services weren't solving. So, we have innovative responses, services, resources but we also have business model near underneath that because we wanted to. We thought, and I think I'm sorry about my English. I can't I my English day. II feel like I have a aphasia because it's like II know everything. I know what I can. I won't say, but I can say it. I don't speak English every day, so I'm sorry I'm not in the academic field, so I don't have many, many opportunities to train my name, my English, what I am saying our goal is to be sustainable and I personally believe and I think that the EPA boards are completely aligned with this is that the solutions that EPA offers to people with aphasia are not only our responsibility to sustain, to provide is something that is a responsibility from all is responsibility. Okay, I, Paul, sound the board. All this, the people involved that we have the responsibility to, because we started that. So, we have the responsibility to provide the organization, and guarantee that all is working. But in the end, the solution doesn't depend only on EPA, we need the community to achieve our goal. We need the people and their families to achieve our goal. So, everyone as responsibility in this this is, I don't have anyone with aphasia in my family. I could have aphasia someday but is not only my responsibility to bring this to the community, or somebody that has aphasia is our responsibility, because in the end some of us really have aphasia. My family member, my neighbor, also is our responsibility. So, when we started this organization, the social organization. We want it to be sustainable. But we don't want it to be depending on funding on the States because many of our social organization in Portugal. They have the tradition of being funded by the States. They are. They have a lot of funding that comes from the States and that is a problem, because states they don't have many money to owe it. So, they don't do the better job because they don't have money sometimes. Sorry about my English. So, we thought, if you want to do better than the State, we don't, If they have a responsibility. We want them to participate, but they don't have the only responsibility we have the wrong responsibility. But the piece, the person with the aphasia and their families that are beneficiating from our services. From these services. From this organization they also have to compensate. And as organization, we have to be aware that to be accessible to all okay, we have to be open to different kinds of participation. So, people with aphasia will compensate will pay for some services in different ways, in different measures and that was the difficulty we had to the term to at the beginning. We have to think about how to do that. So, at the moment, we have different recipes.
Jerry Hoepner: If we put maybe multiple different funders sounds like that are contributing. Is that what you mean?
Paula Valente: So, we go get money from different our services, clinical services, our programs group programs, okay and individual programs. So, people with aphasia pay for part of it. If go do fundraising to pay another part and our and our objective, our goal is the community, the municipalities and the state pay another part. So, we don't have to lose our sleep. Doing fundraising is very difficult in Portugal, I think, from what I learned from other centers, our reality is different in Portugal. We don't have many we don't have access to fundings and programs and investments. And the philanthropic minds is not something very easy in Portugal, very available. So, we do fundraising in Portugal and do fundraising to help people with the aphasia. What is aphasia? What is that? So that is very, very, very, very, very difficult. So, we need to involve people with aphasia. So, they pay for their services for our services. They pay for our therapies, but they don't pay for resources. They don't pay for information. They don't pay for workshops for some of if events that we do that are open and they are invited to come. But therapy with therapists that we have to pay. They have to pay also we have services. We sell courses some of online courses. We did. In our websites, you can see mainly in Portuguese. But we have online courses with very good programs, very good professionals, international colleagues that help us to do the courses. They are another source of income, not a big one, but they help. We did a translation of some communication books from Aphasia Institute, and then we sell them to give us also some in income. So, we have members of our association and pay a contribution. Yes, like every year they pay a contribution. So, we have, some associates that do pay an annual contribution. We do a lot of fundraising and we try to develop more services to, not to people with the aphasia, but professionals that give us income to sustain the organization. So, it's a hard work. But it's in the beginning, because we, it's difficult to involve the municipalities and the States. In these solutions we have to prove that they are better, or they have major impact in in the lives of the persons with the aphasia, but also in their pockets the state pocket, because we have to prove that our support, our kind of approaches make more difference and the people with the aphasia that stay in the State. The public services consume more resources during more time And they don't go. They don't achieve their goals in the end so we are now trying to show the Government our model of work may for the in the future they maybe support some incorporate some of these approaches in their public services. So, it's another way to support.
Jerry Hoepner: Yeah, that's it. I was going to say, yeah, that's a lot of work to do. I mean, you're providing all of the services you're providing a lot of the fundraising and providing a lot of education to students and professionals throughout the country at no charge in many cases. So certainly, this is a grassroots ground up kind of work. it has been a really fun conversation. And I think we did continue this conversation for hours. It sounds like, but unfortunately, we have to close it up at some point. I just want to see if there's any last thoughts that you want to share with our listeners.
Assunção Matos: I just want to say that it looks like it is a lot of work but I really believe in what I'm doing. I still dream Paula is doing one of my dreams, but I still dream that in the future, if I have aphasia, I will find one of my students doing the best job with me. This is my, this is my dream. That's why I believe so much in what I'm doing in And I'm always trying, you know, to move on into and to do different things and best things because I really don't want to face the difficulties people with the aphasia yet face in Portugal, because it's different to have aphasia in Portugal, or to have aphasia in Australia, for instance and I want to do my best job so I can enjoy it in the future.
Paula Valente: I just want to say it's really worth working on a live participation approach, because it really makes all the difference in the people. It's an adventure but it’s worth it. And I hope that this conversation inspired other colleagues to do the same, or to continue doing the same.
Jerry Hoepner: Absolutely. I think that's a great way to end. Thank you both so much. You've been just great to have this conversation with. Really enjoyed it, and I know that our listeners were will enjoy it like you said. I hope this inspires someone else to take on this kind of work. So, thank you so much.
Assunção Matos: Thank you, Jerry. It was a pleasure.
Paula Valente: It was a pleasure. Thank you for the opportunity.
Jerry Hoepner: You're welcome.
Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.
Resources:
Online courses with national and international lecturers: https://ipafasia.pt/formacao/
Mobile application for communication support and functional and social interactions: https://ipafasia.pt/aplicacao-movel-da-afasia/
Info-graphic videos: https://ipafasia.pt/videos-informativos/
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I’m Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA's strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature Dr. Kelly Knollman-Porter, who is a 2023 recipient of a Tavistock Trust for Aphasia Distinguished Scholar Award, USA and Canada. She will discuss how her interest in auditory comprehension and severe aphasia led to her work on reading comprehension.
Guest bio
Dr. Kelly Knollman-Porter is an associate professor in the Department of Speech Pathology and Audiology at Miami University. She directs the Neurogenic Language and Cognition lab, where her clinical research focuses on the development of supports and strategies for adults with aphasia to facilitate reading and auditory comprehension. Her research also explores the subtle reading processing differences exhibited by adults with aphasia through eye tracking technology. Dr. Knollman-Porter directs the Miami University Concussion Management Program, where her secondary research focuses on the development of assessment measures and treatments to manage the cognitive and communication challenges often associated with mild traumatic brain injury. She has over 30 years of experience working directly with adults with acquired brain injury.
Listener take-aways
In today’s episode you will:
Learn about how wanting to help clients with severe auditory comprehension challenges motivated our guest to pursue her doctoral degree after 15 years in clinical practice Consider some of the challenges SLPs face in assessing reading in clinical practice using current standardized measures and learn about some advantages of incorporating a reading questionnaire and close observation for getting a better understanding of your client’s individual reading style, preferences, and needs. Explore the contribution of text to speech (TTS) to the dual modality model for supporting reading success at the book level and some of the critical factors to consider when implementing this strategy with clients. Investigate how eye-tracking technology can help us gain insight to an individual’s reading strengths and patterns.Show notes edited for conciseness and clarity
Ellen Bernstein-Ellis 00:10
Kelly, let me just pause and say welcome! Thank you for being here.
Kelly Knollman-Porter 01:02
Thank you for having me on the podcast. I'm so happy to be here.
Ellen Bernstein-Ellis 01:05
I am so excited you're here today. And as we talked, we always have a pre-meeting where we get to plan what we want to talk about in these podcasts, and as you know, I'm so excited to talk about book clubs and reading strategies. Thank you so much for being our guest today.
Kelly Knollman-Porter 02:23
Thanks again, Ellen. And I have to thank you for your foundational work in the area of reading. You can look back at a lot of the articles that myself or my research team have published and we reference you quite a bit. So thanks for your work also.
Ellen Bernstein-Ellis 02:39
Thank you for that kind, kind mention. I was very fortunate to partner with Dr. Roberta Elman to create the Book Connection at the Aphasia Center of California and be part of that body of work.
We like to start with an icebreaker to give our listeners a chance to get to know you. I will open by asking you to share how the Tavistock Trust for Aphasia Distinguished Scholar Award has or you think will impact your work?
Kelly Knollman-Porter 03:06
First of all, I'd like to just take a moment to thank the Duchess of Bedford and Nicole Campbell from the Tavistock Trust for giving me this honor. I was just so surprised and excited to hear when I was given this award. I had the lovely opportunity a couple of years ago at a Clinical Aphasiology Conference to meet both of these amazing women.
I've been so impressed by the work of the Tavistock Trust. It’s not just work in the UK, they have spread this out across the globe. They really have done so much to not only help people with aphasia, but also help educate the public about aphasia, help us as clinicians get connected, and as researchers get connected in order to stay abreast of more recent research that's coming out in terms of helping people with aphasia. I am just so thankful and appreciative of receiving this honor from this great organization.
But how will it help me? I can honestly say that right now we're in the process of starting a new study and through the support at the Tavistock Trust, we are going to be able to provide funding to help support these research studies and hopefully get some of these funds back into the hands of our participants. I'm excited to keep that research moving through their support.
Ellen Bernstein-Ellis 04:42
That's great. That was a really nice and gracious recognition. Yes, we're so appreciative of the work the Tavistock Trust has done.
How about if we open by sharing a little bit about your professional journey? I think you considered yourself a non-traditional doctoral student. You said you returned to get your doctorate after about 15 years of practice. Tell us a little bit more about what you were doing when you decided to return to your doctorate. And what were your passions that inspired you to return to school? Not an easy decision, I would guess.
Kelly Knollman-Porter 05:19
No, it wasn't. I can honestly say I wasn't looking for it. I was very happy in clinical practice. I worked in a hospital for 15 years before coming to academia. I loved working in the medical field. I loved collaborating with other rehabilitation professionals, dieticians and physicians. I was very happy working in these environments. But Miami University actually reached out to me. They were wanting to further develop their adult program and they said, “Hey, will you come to academia and share some of your clinical knowledge and also lead the Miami University Aphasia Support Group?” They knew I had always had a long interest in working collaboratively with people with aphasia and clinically. So they asked me to come. I have to admit, I turned them down a couple times. And then finally, I made the big plunge and said, “Why not try it?” I wasn't really seeking it out.
Originally, however, I was reaching a point where I was becoming frustrated with some of the reimbursement issues we were facing clinically. When working with people with aphasia, I sometimes felt like insurance was dictating how much treatment I could provide and how long I could provide it, even though I felt like many people could continue to make progress. I just felt like my hands were tied, and I was restricted. That was frustrating to me.
I have to admit, when I came to academia, I was thinking, what can I do in order to explore this further? How can I potentially contribute to the research base in order to provide evidence to show that people with aphasia can continue to make progress, not just months after diagnosis, but 5, 10, 15 years? Because as a clinician, we've all seen it, absolutely. We know that people with aphasia want to continue to actively participate in life activities. And they can, if given the opportunity and the support. So, when I made that transition to academia, I quickly made the decision to go back and get my PhD. Primarily focusing on clinical research, specifically with people with chronic aphasia,
Ellen Bernstein-Ellis 07:52
I am sure that there are listeners out there who may be sitting on that fence as well thinking, Should I do it? Should I pursue this doctorate? I just want to acknowledge and honor the challenges of being a doctoral student, especially while also being the parent of young children, but I just think it should be recognized. I was wondering, what was the best advice you got from your mentors? Because I'm sure you reached points in that process where you wondered, was this the right thing? And I want to support listeners who are out there thinking, “Can I do this? Should I do this?”
Kelly Knollman-Porter 08:30
It definitely required a team. When I decided to go back get my PhD, I had a 10 year old and a five year old. That just requires a lot of work, going to things after school for them and keeping your family a priority, but yet still working full time getting your PhD while commuting. And coming back, a special shout out to my spouse, who helped me keep all the balls up in the air. My family came along. I had amazing support from my in-laws and my parents, in terms of helping pick up the kids when needed.
But I'm not going to lie, it was a challenge. And there were times when I wanted to throw in the towel. I wanted to say, “You know what, this is just too much for me to do right now.” But I did have people that came alongside me, that kept encouraging me, saying “It's okay, stay the course, what you're doing is good, and don't lose faith.”
I have to give credit to Aimee Dietz. Dietz was my dissertation chair and she was very encouraging, supportive, and understanding that I was a mother and I had a life outside of PhD and work. She respected that. It was funny. She ended up getting pregnant at the same time and had her child. So I think we kind of supported each other through that. But one thing she said to me that I always remembered because she knew I loved clinical practice. I was like “Amy, maybe I should just go back to clinical practice?” And she said, “Kelly, you realize that your research is going to touch more people then your clinical practice.” Not downplaying clinical practice at all. But she said, “Your research has the potential of spreading information not only across our small geographic Midwest area, but also across the country and across the world.”
Ellen Bernstein-Ellis 10:35
What a wonderful piece of advice. No surprise, what a lovely mentor to have.
Kelly Knollman-Porter 10:39
Absolutely. I think I told you this before, there was one very difficult day that I was having. My family was sitting around the dinner table and the house was a mess. I had grading to do and I said to my husband, “I'm going to quit, I'm not going to get my PhD.” And my 10 year old daughter was sitting there and her name's Anna. And she said, “Mom, what would you say to me if I told you I was going to quit something?”
Ellen Bernstein-Ellis 11:11
What a wise 10 year old.
Kelly Knollman-Porter 11:13
And at that moment, I realized that people were watching and other women might be watching and saying, “Hey, stay the course, persevere.” I am proud enough to say that that same daughter just recently graduated from vet school with her DVM and I hope that my perseverance helped her persevere also.
Ellen Bernstein-Ellis 11:36
I love that story. Thank you for sharing it with our listeners today. Your doctoral work originally focused on the treatment of auditory comprehension in severe aphasia. I know that was one of your clinical loves. I want to recommend to our listeners since we can't cover everything today, your 2018 article, we'll put it in the references of the podcast show notes, about intensive aphasia auditory comprehension treatment.
Why don't you share how you became involved in reading comprehension? Because you started out in this auditory comprehension world, right?
Kelly Knollman-Porter 12:13
Absolutely. Well, again, I really feel like comprehension is instrumental. There's been some work done that says people with auditory comprehension deficits, the more severe the auditory comprehension deficits, the greater risk of decreased success in rehabilitation outcomes. So I always had a passion for exploring auditory comprehension and different potential treatments to facilitate comprehension with people with chronic aphasia. But Aimee Dietz gave me that opportunity to do that.
But it was interesting. During my dissertation process, I actually found out that my son had a pretty significant dyslexia. We kind of suspected it with him growing up, but then when you hit kindergarten, you really start to see the reading challenges kind of surface. And I remember talking with Amiee about reading. During that time, we were able to get my son connected to a great reading program that explored different compensatory supports to help facilitate any reading process, one of which was text to speech technology.
And at that time, Amiee was collaborating with Karen Hux from the University of Nebraska on a potential reading study. And she says, “You're so interested in reading right now and you're interested in aphasia? How about combining those two loves, and getting involved with a reading study?” And the rest is history, that kind of landslide into a lot of research collaborations over the past 12 years that I've been involved with. But my son Eric did inspire that because seeing his success with text to speech with dyslexia, it made me think, why not text to speech with people with aphasia? What about that dual modality presentation?
Ellen Bernstein-Ellis 14:15
That's great. I also think you're showing us yet again, how often our personal journeys inform our research and clinical paths. I think that's a beautiful example.
Reading has been repeatedly shown to impact quality of life for individuals with aphasia. They tell us that so often, but it's often challenging for clinicians to allocate the limited clinical time to assessment and treatment. Reading treatment takes a while to do so. I feel like I'm asking you to address the million dollar question here. But what are your recommendations on how to manage this challenge? And what are some of the challenges in assessing reading? I've alluded to the time, but why don't you elaborate? You've done a deep dive here.
Kelly Knollman-Porter 15:06
Absolutely. And it is challenging because first and foremost, I find that a lot of our standardized assessments will try to tap into assessing the reading challenges, but it really only scratches the surface. I haven't found a really great standardized assessment that I can use and rely on that really helps direct my treatment course,
You have to use a variety and you have to do some that you just make up on your own based on how exactly that person is responding. But generally, if I'm going to assess, I first have to start by having a really in-depth conversation with the person with aphasia or their care partner. First of all, you have to find out if reading is of interest to them, of course,and the types of reading materials that they like to engage with.
I think about people in our Miami University aphasia support group. I have one individual who would read a novel a week prior to her stroke. I had another person in our group who said to me, “Kelly, you know what? I never read books.” It was not something of interest to him. You have to treat those two people very differently. You have to find out what their interests are. That's always where I start--with just an interview and talking with them about aphasia.
And then I talked to them about their interests in terms of “Are you comfortable with technology? Are you not comfortable with technology?” I actually give them reading tasks. When I assess reading, I of course, start at the word level, and then creep up to the sentence level and add more complexity and length. But when I give them a paragraph to read, I don't just look at, did they get the answers correct or incorrect? I'm not only looking at accuracy per response, but how long does it take them to process that multi sentence information? So for example, if I gave them a four sentence paragraph to read, I watch them very closely to see how they're attacking that reading task. And that doesn't take that long out of your assessment time. I watch where their eyes are moving. I watch to see if their eyes are regressing back within a sentence while they're reading.
And if I notice that they're really struggling, I also say to them, “Tell me, what are you having difficulty reading right now? Can you point to the words that you're struggling with? Can you point to the words potentially that you're skipping? Tell me about this process, and try to tell me how it's different from the way you read before.”
And sometimes we underestimate what people with aphasia can tell us about their reading experiences. I have found that a lot of the people that I have worked with can be very specific about what they're having difficulty with. Now, there's always that small population that might not have the awareness. But it's still the majority of them that can.
I was just working with a gentleman last week, and I was like, “Show me what you're having difficulty with.” And he pointed to the words that he struggled with, and that helped me understand. Are you having more difficulty with content words? Are you having more difficulty with verbs? Are you having more difficulty with articles? What is it about this process that’s making it hard? Because many times people with aphasia can read that paragraph very slowly and very carefully and end up with a high percentage accuracy in terms of performance, but if it's taking them five minutes to read a four sentence paragraph, it is too fatiguing, it's too much. And they're going to end up avoiding getting back to reading things that they want to read for pleasure.
Ellen Bernstein-Ellis 19:18
Right, because the burden is too high.
Kelly Knollman-Porter 19:21
Because the burden is too high. I really feel like if we can look at these things clinically, we just need to take a little bit of time to talk to the people and actively watch how they're attacking that reading task.
Ellen Bernstein-Ellis 19:37
If I circle back briefly to the impact reading has on quality of life, your 2015 article does a beautiful job of describing the contribution of access to reading to the quality of life. This was a qualitative study that interviewed six individuals with aphasia to hone in on their individual reading preferences and supports. But before you describe these results, I'd like you to share with the listeners your reading assessment survey. You just talked about listening carefully and asking questions. I think that's harder than you're making it sound. But you've given us this tool that is an amazing springboard.
Many of us probably have just informal tools, lists of questions that we've developed on our own over time. But in that article, you actually attach this beautiful, clinical tool. How did you go about developing this initial reading survey that you do? Thank you for including that in the article. That was wonderful.
Kelly Knollman-Porter 20:46
Oh, absolutely. A special shout out again to my research team, Karen Hux, Sarah Wallace, and Jessica Brown. We spent many hours of our meeting time creating this questionnaire.
Ellen Bernstein-Ellis 21:02
But that's great, these great clinical minds all coming together, embracing this questionnaire, planning to put it together, that's beautiful.
Kelly Knollman-Porter 21:10
Absolutely. I have to encourage everybody to try to get to be a part of a research team. We're stronger together than we are in isolation. I have the utmost respect for each of these women. They have taught me so much. We each brought to the table unique strengths. All four of us are unique in our own special way. And like I said, I've learned so much from them.
But we bring that when we're creating our research studies. We always start with a rough draft. And then we question each other. We say, well, I've seen this clinically, or I think about this from a research perspective. I definitely brought to the table my clinical experience in working with people with aphasia, but then Sarah did also, so too Jessica, and so too Karen. Just working through what we saw were challenges that people with aphasia might experience and what we've found clinically to develop that questionnaire.
Ellen Bernstein-Ellis 22:11
So, you created this questionnaire with a variety of sections that helps someone systematically go through understanding that person's reading preferences and strengths and try to get a sense of what their profile is, right? That's your starting point. And then you take it from there.
Kelly Knollman-Porter 22:28
Exactly. What do you like to read? Do you like to read text messages? Do you like to read novels? Where do you like to read? How do you like to read? Do you like to hold a book versus do you like using technology? What are all the different ways that you personally like to read?
I can honestly say one thing that we learned from the qualitative study, I know I'm jumping to that, was everybody has their own unique reading experiences. There's not going to be a one size fits all approach to the assessment or the treatment of anyone with a reading challenge. You will not find a cookbook approach to this. You have to do it on an individual basis. And if you do, I think the outcomes are going to be stronger.
Ellen Bernstein-Ellis 23:20
Let's circle back to that 2015 article, we'll jump back and forth. Could you describe some of the key takeaways from that study? Maybe you could explain why you think that dual modality model, which we started to allude to earlier with text to speech, is so important to supporting reading success? That's part of my takeaway from that 2015 article.
Kelly Knollman-Porter 23:45
I wish I could tell you that in 2014, when we were initially planning this qualitative research study that we were thinking about TTS. I was from a distance, but we weren't actively looking at text to speech (TTS) at that time. But one thing that my colleagues and I felt we had to do first, if we were going to explore reading research more, we had to go to the people with aphasia to learn what they wanted. So, before we took our own personal opinions about what we thought people with aphasia needed in terms of reading, we thought we should start with a qualitative study and find out what they wanted and what they needed.
And you know what, that was such an important starting place for our research. Because again, we found each of the people that I interviewed had their own unique needs, but yet every single one of them passionately wanted to read. They wanted to get back to reading and they wanted to read books. They wanted to read books about romance and they wanted to read about horror stories. I'll never forget one of our participants. She told me that she liked to read Stephen King novels. She laughed and says, “Kelly, you couldn't handle that.” And it's true. I don't like those scary stories. But, they wanted to read. They want to learn more about aphasia, but they just want to read what everybody else is reading.
Ellen Bernstein-Ellis 25:23
You want to read what your peers are reading. I will always remember this story where one of our book club members at the Aphasia Center of California was so excited at a book club meeting because he had taken the book that we were reading, I think it was Shadow Divers at the time, to the golf course. No one usually approached him and chatted with him. But he actually had a couple guys come up when they saw the book and engage with him in discussion. So it became this beautiful bridge of connection. I can't communicate as well, but they had this awesome commonality to share. It was just what they were interested in. So that example of just wanting to do what your peers are doing because there's such joy in being part of that reading community.
One of my favorite parts of that 2015 article is also the clinical reading framework that's on page 19. It helps a clinician start to think about how to implement reading supports and strategies. I think that is a beautiful contribution. Could you describe that model for our listeners?
Kelly Knollman-Porter 26:30
Sure, of course, you start with the questionnaire, you start with asking them what they want to read and what they like to read. And then you do an informal assessment. And then, as we walk through that framework, you establish personally relevant goals, based on their unique reading needs and experiences.
But then as you're considering treatment, you have to think about lots of different avenues that you can potentially go down. And that's going to be based again on their needs. Specifically, are they interested in technology? If they're not interested in technology, then that's going to take you on one route, but if they are interested in technology should you consider text to speech? If they're not interested in technology, will picture support facilitate their understanding of the written text? So basically, looking at personalizing the treatment approach. And going through a process of trial and error, looking at the length of the reading that should be used, or the complexity of the reading materials, and again, gearing treatment towards their unique personal needs. That's kind of what it's all about.
Ellen Bernstein-Ellis 27:50
You really provide a very clear framework, and I think that always helps us with our clinical thinking-- to know what questions to ask and how to break it down.
A wonderful follow up to that 2015 article, is the 2022 article that compared comprehension, processing time and modality preferences for individuals with and without aphasia when reading books using text to speech. Could you start by explaining or describing what motivated your work to be at the book level? So often, we start with words and then sentences, but here, you took this big, big leap and started at the book level.
Kelly Knollman-Porter 28:31
I'm going to swing back to my 2015 article real quick, if that's okay. Because I have to admit, one of the participants in that study gave us direction to go the TTS route first. So, of those people that we interviewed in that initial qualitative study, only one of them was reading more after his stroke than before his stroke. And this gentleman, he was in his mid 40s at the time, and very into technology. I remember when we were doing the interview with him, he was adamant. He was like, “Kelly, text to speech works!” So of the six people that we interviewed, he was the one that inspired us to start looking at text to speech more-- that eventually led to all these other studies.
Because he said, “I've read a novel.” He laughingly told me that he read Fifty Shades of Grey, and he also was able to get online and, through text to speech, order things through Amazon or different mechanisms like that. We started exploring text to speech technology and the degree to which it could help from a dual modality presentation. So that kind of got us on that track.
My colleagues and I explored the use of text to speech at the sentence and paragraph level to see if it helped. We really had mixed results, I have to admit. We were finding that sometimes it helped some people, but it didn't help all people. And we were almost getting a little frustrated with what we were finding, and we were feeling that we were hearing from clients. I have to admit, I've run into clinicians all over the country and they're like, “Yeah, text to speech works.” But we weren't seeing those strong outcomes with our research.
It was right around the pandemic time. I said to my colleagues, “We're gonna have to take a big leap here with our research, instead of just looking at the sentence and paragraph level, why don't we just jump to books?” We know that people with aphasia want to read books. We have a feeling that the text to speech might help them at the book level. We know that this research is going to get a little muddy, there's going to be a lot of variables that we can't control for, but let's try to do a study based on what people with aphasia want.
So we took this big leap of faith and did this book study. And this one was where we decided to control many factors in terms of having them read a certain section and then using text to speech and then read another section and then use text to speech for another section. There was a lot involved in it. But that's ultimately why--because people with aphasia told us that they want to read books.
Ellen Bernstein-Ellis 31:45
I know we're going back and forth. But these topics are all integrated. Let’s take a moment and ask you to talk a little bit more about text to speech and what you've learned about using it for individuals with aphasia. You started to again allude to some of the things, particularly the variability across people. There are pros. And there's cons.
Before we dive in, I want to refer our listeners to this nugget, this beautiful little gem, that I found just last week. It was in the March 2023 ASHA Leader, and it's with your co authors Sarah Wallace and Karen Hux. The article lays out some of the considerations to take when introducing a client to text to speech technology, like how to do it in a systematic way, how to explore and allow for the individualization that is necessary, that practice is necessary. It's a great clinical perspective article. We'll put the link in our show notes. But what do you want to say about the lessons learned with text to speech?
Kelly Knollman-Porter 32:47
Absolutely. It takes practice when you're considering using text to speech with a person with aphasia. First of all, you have to see if they're interested in using technology. If they have access to technology, that's your first question. And then, can they access the device physically? So lots of things have to be taken into consideration.
If they show interest in using the technology, you need to sit down with that person with that technology that they choose. If that's an Android device, if that's Mac device, if it's a laptop, if it's an iPad, if it's a smartphone, you have to bring their device to the table and see to what degree they can access the necessary text to speech applications that are needed in order to use it successfully for reading tasks. If they cannot access it, then you need to take a step back and create an instruction manual to help with pictures and aphasia friendly formatting, in order to give them a step by step method to access that technology.
So often, we start to use technology intuitively. We think everybody else should be able to use it that easily. But we have to make sure that the person can turn the device on. A lot of older people also have decreased circulation in their fingertips and sometimes when touching the app, they can't get it to trigger, so they have to warm up their fingers before accessing it.
Ellen Bernstein-Ellis 34:33
I'm so glad you mentioned that because I can actually personally relate to that one. Because these nuances are so important. , I don't know if they’re nuances, these challenges that you may not realize until you actually sit down and work with the person.
Kelly Knollman-Porter 34:48
Absolutely. So when I know someone is interested in this, I always start with pictures--a detailed instruction book that shows you step by step what you have to touch in order to access that TTS system. I put it in a binder with a plastic coat covering over the top, so that they can have that manual sitting right there by their device.
And then we practice with it. We say, “Okay, now I'm going to show you how to access this text to speech technology. Now you show me if you can do it using your manual.” And we go back and forth. We're not even to the reading part yet. You have to first access the system.
If they show that they can then access it, then we actually get into playing with the different TTS features. So anything, from the speed of the voice presentation on TTS is crucial. You have to find that ideal speed for that person that's not too fast, and not too slow. That's going to help their processing. So, playing around with the speed.
Also playing around with a voice. Do they want a male voice? Do they want a female voice? Do they want one with an accent? You'd be surprised people are very particular about the voice that they want.
And then, also exploring the use of highlighting. Do they want to have highlighting? At the single word level? Do they want each word highlighted as it's read? Or do you want the full sentence highlighted? Or do you want no highlighting, because some people don't like the highlighting.
So there's a whole sequence of steps that you need to go through in order to determine if someone is going to be able to access the TTS system, and then, if they're going to be able to use it successfully. And that does take time. And it takes experimentation and setting up a system for a person, letting them try it on their own. And then having them come back and ask, “Okay, what did you like? And what did you not like? Can we change this at all?” So it can be adaptive, it might change over time. We don't want to just give one structured TTS system to all people. It won't work.
Ellen Bernstein-Ellis 37:17
I think that dovetails beautifully with my next question, which is, if we circle back to that 2022 article, I was struck by some of the variability across participants and that you were able to embrace that as a researcher and look at what that means. The variability across people reinforced your approach of taking a strength-based model approach when assessing reading performance for your clients. Are there other outcomes you want to highlight from that study?
Kelly Knollman-Porter 37:49
Absolutely. One thing we found overall, is that for the group as a whole, TTS technology helped them process the written materials faster, without compromising comprehension. I'm gonna say that again, so they could access and process the written information faster, without compromising comprehension. For some of them, that was huge, right? Because they were able to read that book with less time, and hence less fatigue--
Ellen Bernstein-Ellis 38:27
---that reduces that burden we were talking about earlier, right, that sense of fatigue and burden. However, so keep going. I'm sorry.
Kelly Knollman-Porter 38:34
So we found it helps process the information faster. But as a group overall, we found that it did not improve their comprehension. And that's been kind of the thorn in our heel, more like, why is this text to speech not facilitating comprehension? Because if you look at the theory on dual modality, if you're presenting something auditorily and through writing, that should facilitate comprehension, right? But we weren't seeing that with all participants.
Now, some of that could be the varying degrees of complexity of their unique type of reading problem that they had. Then we did have a couple people that actually did show improvements in comprehension. We had one participant that had a 20% increase in comprehension with TTS compared to the read only condition. We had another person with like a 10% increase. So this works for some people, in terms of facilitating comprehension, but not all. So we felt like we're getting close, but we're still not quite there. And that's why we're needing to continue to do more research.
Ellen Bernstein-Ellis 39:50
I just want to take a pause. This research was all done during COVID. I want to thank you for how clearly you describe the training and materials needed for this study in that article. I have watched some of my colleagues trying to do research during COVID. They did some incredible things. Looking at that article made me wonder how did you do that? I want to shout out your tenacity in accomplishing this during COVID. I think you mentioned that it gave you multiple “front porch opportunities” to solve tech challenges, because you had to go to the house of your participants, literally sit on the porch and try to fix the iPad, or the Kindle, or the whatever, and hand it back to them. So thank you for just hanging in there during a time when it was really hard to do research.
I'm looking at the time, and I want to make sure that we get to your eye fixation behaviors and processing time in individuals with and without aphasia article. I've just covered a lot at the moment. Was there something you wanted to reflect on in terms of your “porch moments” before we jumped to the eye fixation study?
Kelly Knollman-Porter 41:11
I think as a speech language pathologist, it's kind of in our blood that we have to be very adaptive and flexible. Sometimes you have to jump in the car and drive and sit on the porch, especially. This is another challenge with using technology, if an update happens, and it totally changes the formatting of an application you're using all the time. Now, if a person with aphasia cannot always adapt to that, I would get a call, “Hey, Kelly. Something's popping up here. And I can't get rid of it.” So I would just hop in the car, and I'd say, put everything on your front porch. I will be there. I'm just going to sit on your front porch, and I will deal with the update.
Ellen Bernstein-Ellis 42:02
That could be cold in Ohio. I'm picturing you sitting there with gloves and in a coat trying to fix things.
Kelly Knollman-Porter 42:11
Yeah, that was about it. But that's our skill as speech language pathologists.
Ellen Bernstein-Ellis 42:17
You showed a lot of dedication. You keep giving a shout out to your team and your lab.
Kelly Knollman-Porter 42:24
I have a special shout out to Mackenzie Pruitt, who worked on that study. She was a masters level student, and she was right there in the trenches with me. I have a great team.
Ellen Bernstein-Ellis 42:35
I want to go back to this eye fixation behaviors study. While we're not likely to be able to assess eye fixation in daily practice because the equipment and technology is beyond what we would have in our clinics or private practices, but your results really hold clinical significance for understanding reading, processing strengths and challenges. Do you want to describe some of the highlights from that study?
Kelly Knollman-Porter 42:59
I think one of the biggest frustrations when you work with someone with reading challenges is you really are not 100% sure how they're processing the written text. We're assessing them, we're watching them, we're seeing their response to the questions. But what are you having difficulty with? You can ask questions, you can watch their eyes clinically. But one thing that eye tracking technology has that I'm grateful for is, it showed me how people with aphasia process written text.
And we wanted to specifically not just look at the word level, there's some great research out on word level processing and sentence level processing. But we wanted to take a big leap and look at multi sentence processing. So what are those eyes doing? What did they fixate on? What are they regressing to, and again, I'm going to give another shout out to Drew Bevelhimer. He was also a master's level student that was working in my lab at the time, who, again came alongside me to help get this eye tracking technology going.
This really did show me how unique the reading challenges that people with aphasia have when reading multi sentence information. We specifically looked at how often they had within word regressions, like within a longer word within sentence regression--so when their eyes look back to another word within the sentence, and then how often they look back to a previous sentence. And one thing that that really showed us is with the use of text to text to speech technology, their numbers of regressions significantly decreased. So they did not have to regress as much while reading, which again, resulted in a decrease in processing time.
Another thing that this study showed, which I and my colleagues thought was really interesting, we actually brought in a group of neurotypicals to do this study also. When we used the default text to speech voice rate, we actually found the opposite results with neurotypicals. When using text to speech, set at that default speed, like right around 150 to 180 words per minute, they actually had more regressions with text to speech than in the read only condition.
Ellen Bernstein-Ellis 45:39
So, you have to match the speed with the person. Is that where this is headed?
Kelly Knollman-Porter 45:43
That is exactly where that's headed. It really reinforced to us how you have to consider the speed of that text to speech voice. Because if you do not have the appropriate speed, it can actually have some detrimental effects in causing more regressions. That's one thing, looking to the future, that my colleagues and I are going start looking at-- exploring how to get that synching better in terms of the eye movements with the rate of speech.
Ellen Bernstein-Ellis 46:17
So is that is next in your research, where you're headed,
Kelly Knollman-Porter 46:21
That's where we're headed.,
Ellen Bernstein-Ellis 46:23
I'm going to look forward to that. I just want to say that your body of research on reading and reading comprehension, and supporting and using strategies and understanding the patterns and challenges that people with aphasia have and how they get them back in the game to support them. I just think it's such a valuable contribution. I really appreciate this beautiful body of research.
And there was another March 2023, ASHA Leader article, besides the one on text to speech, that describes how reading impacts return to work. It's an article that tells a story about your efforts to support a teacher who was working to return to the classroom. I'll put that link in the show notes too, because it's a beautiful collaborative, “we're going to do this as a team” story. And it wasn't easy. But it was very much supporting the individual goals and journey of your client.
Do you have any parting advice as we wrap up for clinicians who are going to assess and work with reading with their clients? That's what this whole show has been about. But what else do you want to add we end?
Kelly Knollman-Porter 47:36
Don't be afraid to explore reading. I know it seems intimidating and overwhelming, because it is challenging to figure out what's specifically the problem, but I can honestly say that if you invest some time in it, the outcomes are going to be worth it for your clients.
I look to some books studies that I've done here within our Miami University aphasia support group and, and I have many members that prior to the book club study that I did, had not picked up a novel for 15 years since their stroke, and through adaptive materials, and again, shout out to Roberta Elman’s work in the Book Connection materials that her and her group have created. We've used them a lot here at Miami University. But through those adaptive materials that she's created, she's opened up a world of opportunity for people with aphasia to be able to access books. Giving people that opportunity to get back to reading materials that they'd like to read is just really rewarding.
Ellen Bernstein-Ellis 48:55
Thank you so, so much for this conversation and for all the work you're doing. And we'd like to close with one kind of broader, big picture question. Kelly, if you had to pick only one thing that we need to achieve urgently as a community of Life Participation providers, what would that one thing be?
Kelly Knollman-Porter 49:23
When we talked about this question, I was slightly discouraged because my ultimate reason for going and doing research was to provide research that will lead to greater reimbursement of services for people with chronic aphasia. I hate to say it, but here are 15 years later, that's still my big takeaway point. We need to find better ways of helping people with aphasia in the chronic phases get reimbursement for services that they so desperately need.
We also need to talk to clinicians across the country. We have to be very careful in terms of how we give services to this population. They can still make progress. They can still make gains. We just need the support in order to make that happen. I'm just going to throw one other thing out there. This pertains to the ASHA Leader 2023 article for the teacher that was trying to get back to work. We need to find more opportunities for people with aphasia to still have part-time jobs without losing their benefits, because they're caught between a rock and a hard place. If I go back to work a little bit, I'm going to lose my benefits. I remember in that article, Christine Bowles, who we interviewed, shared working full time is too hard, but I still have more to give. I still have more to give. I'm not done yet. I'm only in my 40s. Why can't we give people with aphasia more opportunity to work without losing benefits?
Ellen Bernstein-Ellis 51:09
Thank you for that message. I think it's critical and one that a lot of people face and think about. So thank you for bringing that up. And for participating today. It's been a wonderful opportunity to talk about your work. Your passion and excitement comes across so much.
And I'm going to thank our listeners for listening today. And I just want to remind that our references and resources mentioned in today's show, just see our show notes. They're available on the website, www dot aphasia access.org. And there you can also become a member of our organization and support the podcast and all the other great work that's being done by aphasia access, and you can also browse our growing library of materials and find out about the Aphasia Access Academy. And if you have an idea for a future podcast episode, email us at info at Aphasiaaccess.org. For Aphasia Access Conversations. I'm Ellen Bernstein-Ellis. And thanks again for your ongoing support aphasia access
References and Resources
The reading intake questionnaire discussed in this interview, is accessible here:
https://aphasiaacc.memberclicks.net/assets/docs/Reading%20History%20Questionnaire-Knollman-Porter-AphasiaAccessPodcast.pdf
To see examples of adapted book club materials mentioned in this episode, go to:
The Book Connection on the Aphasia Center of California website: https://aphasiacenter.net/the-book-connection/
Hux, K., Wallace, S. E., Brown, J. A., & Knollman-Porter, K. (2021). Perceptions of people with aphasia about supporting reading with text-to-speech technology: A convergent mixed methods study. Journal of communication disorders, 91, 106098.
Hux, K., Knollman-Porter, K., Brown, J., & Wallace, S. E. (2017). Comprehension of synthetic speech and digitized natural speech by adults with aphasia. Journal of Communication Disorders, 69, 15-26.
Knollman-Porter, K. (2023). Navigating a Job's Language Demands After a Stroke. Leader Live. The ASHA LEADER, 28(2), 42-46.
Knollman-Porter, K., Bevelhimer, A., Hux, K., Wallace, S. E., Hughes, M. R., & Brown, J. A. (2023). Eye Fixation Behaviors and Processing Time of People With Aphasia and Neurotypical Adults When Reading Narratives With and Without Text-to-Speech Support. Journal of Speech, Language, and Hearing Research, 66(1), 276-295.
Knollman-Porter, K., Brown, J., Hux, K., Wallace, S., & Crittenden A. (2022). Reading comprehension and processing time when people with aphasia use text-to-speech technology with personalized supports and features. American Journal of Speech-Language Pathology, 31, 342-358.
Knollman-Porter, K., Dietz, A., & Dahlem, K. (2018). Intensive auditory comprehension treatment for severe aphasia: A feasibility study. American Journal of Speech-Language Pathology, 27(3), 936-949.
Knollman-Porter, K., Hux, K., Wallace, S. E., Pruitt, M., Hughes, M. R., & Brown, J. A. (2022). Comprehension, Processing Time, and Modality Preferences When People With Aphasia and Neurotypical Healthy Adults Read Books: A Pilot Study. American Journal of Speech-Language Pathology, 31(6), 2569-2590.
Knollman-Porter, K., & Julian, S. K. (2019). Book club experiences, engagement, and reading support use by people with aphasia. American journal of speech-language pathology, 28(3), 1084-1098.
Knollman-Porter, K., Wallace, S. E., Brown, J. A., Hux, K., Hoagland, B. L., & Ruff, D. R. (2019). Effects of written, auditory, and combined modalities on comprehension by people with aphasia. American Journal of Speech-Language Pathology, 28(3), 1206-1221.
Knollman-Porter, K., Wallace, S. E., Hux, K., Brown, J., & Long, C. (2015). Reading experiences and use of supports by people with chronic aphasia. Aphasiology, 29(12), 1448-1472.
Wallace, S. E., Hux, K., Knollman-Porter, K., Patterson, B., & Brown, J. A. (2023). A Mixed-Methods Exploration of the Experience of People With Aphasia Using Text-to-Speech Technology to Support Virtual Book Club Participation. American Journal of Speech-Language Pathology, 1-24.
Wallace, S. E., Knollman-Porter, K., & Hux, K. (2023). How Text-to-Speech Aids Reading for People With Aphasia. Leader Live 28(2), 52-53.
Wallace, S. E., Hux, K., Knollman-Porter, K., Brown, J. A., Parisi, E., & Cain, R. (2022). Reading behaviors and text-to-speech technology perceptions of people with aphasia. Assistive Technology, 34(5), 599-610.
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Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.
I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature Lauren Schwabish. In this episode, we'll be discussing Lauren’s work on groups for parents with Aphasia and person-centered approaches to primary progressive aphasia interventions.
Biosketch:
Lauren Schwabish M.S., CCC-SLP is the owner of Neuro Speech Services, a private practice based in Northern Virginia, specializing in person-centered assessment and treatment of cognitive-communicative disorders related to stroke, brain injury, mild cognitive impairment, ADHD, and other neurologic and neurodegenerative conditions. Lauren received her Bachelor of Science degree with Honors in Communicative Disorders from the University of Wisconsin-Madison and holds a master’s degree in Communication Sciences from Hunter College of the City University of New York. She is licensed in the Commonwealth of Virginia and state of Maryland and is a certified member of the American Speech Language Hearing Association. She has over 23 years of experience working in hospitals and acute rehabilitation centers and is passionate about providing meaningful and accessible health education about the brain to patients, families, and health care professionals. Lauren is committed to empowering communities with evidence-based information and best practices in brain health behaviors.
Take aways:
LPAA is vital to understanding what the client wants and needs from you as a clinician Parents with aphasia encounter many of the same challenges that all parents experience as they’re raising small children but this is further complicated by aphasia While work and other community obligations may go on hold after aphasia, parenting doesn’t go on hold People with aphasia who are in the process of raising children benefit from peers who understand what they’re going through People with PPA are still connected to their family and kids and need support in navigating everyday conversations that are necessary to parenting and participating in their children’s lives Group therapy provides a safe and supportive environment for people with PPA to find supports or relate to others that have similar experiences as them Learn how to be “a purveyor of hope” for individuals with PPA and their familiesInterview Transcript:
Jerry Hoepner: Well, welcome, Lauren. I'm really excited to have this conversation with you today. And I thought maybe it would be a good thing. If we kind of begin by introducing our readers to your experience as a speech language pathologist, and kind of what led you along this life path of participation approaches to Aphasia and that person centered approach which is really central to what it sounds like you do in your in your workplace setting.
Lauren Schwabish: Yes, thank you so much for having me. I'm a big fan of aphasia access and the podcast is on my it's on my feed routinely. So it's really an honor to be here. I am like I said, a speech language pathologist for 23 years. I started out in I worked in New York City in a really big city hospital. There was, you know 2 campuses, a thousand beds each. It was literally everything under the sun, and I think that was my first experience. In really getting to the heart of what a what drives a person, what a person is all about because I was so different from the population. I came from a different place. I had a different educational trajectory. You know, this was a city hospital that had, mostly an underserved population, and it was in New York City. So it was tremendously, culturally diverse and one of the things I recognized instantly was that the way I would sort of drive compassionate and effective care was to really understand who I was working with and so I think from the from the jump, you know, just really having the humility to say, I need to sit and listen and understand this individual so that I can support their recovery from you know stroke, trauma you know, sort of acute illness. That was something that really just ended up making sense. So that was sort of my foundation. And then I moved into acute rehab into a hospital in Northern Virginia, where I am now and really just found, even though I was in a sort of a very medical setting, that connecting with the individual was absolutely the most important thing, and it was how I really felt that I could you know, show others how to do effective therapy. So I didn't know that it was life participation approach, but it was just really about understanding what the person needed to communicate about and in the hospital it's a different setting than in the community where I am now in private practice. But 21 years later, when I started my own private practice, that's when I really found LPAA as a principal, and could start to put some of the theory behind what I'd been doing all along.
Jerry Hoepner: Nice, you know. It's funny. I was just having a conversation before we started this conversation, with Tami Howe, who is going to be doing a future conversation about the role of environment and accessibility in communication with individuals, with aphasia. And one of the things that we kept coming back to is exactly what you said, just getting just spending time listening and getting to know who that individual is as a starting point for really recognizing authentically what that person's wants, needs beliefs, values- all of those things are and I think that's just a wonderful starting point for thinking about life participation, because it's easy to jump straight into the therapy or the assessment pieces. But what we need most is just to put our listening ears on, and really find out who that individual is and what makes them tick. So wonderful place to start.
Lauren Schwabish: Yeah, and I would say that sometimes, especially when you know thinking about that acute rehab or acute care setting when someone's, you know, potentially very limited in their life participation, what they can do getting to understand like you said their beliefs. You know. What were they doing before they got to where you are? What can they teach you about? It’s really honoring their strengths and sort of who they are prior to this acute illness. And so you can see them as that individual and they oftentimes can tell you more about that than you could. They may be able to from the from the, you know, sort of compromise place that they're in and it just feels right, you know, that's the one thing I tell. You know, when I was in the hospital, and I was working with therapists were so concerned about productivity and so concerned about billing. And just oh, my gosh! I don't think I have time to do this, and for me it's like you have nothing but time to honor this aspect of it, because once you figure out what makes this person tick, what excites them? What kind of music they wanna listen to what they don't like, you know, that's the foundation. And it shouldn't be something that's an afterthought to the skilled, clinical, hard skills that you have. It's really the first step, and it just when it works, it works well. So I think people just have to know that they have to have the permission, right from their environment, from their you know department, their supervisors, their peers, that this is actually very much the most essential ingredient to being an effective therapist.
Jerry Hoepner: Yeah, and what a refreshing way to start. I'd like to say that all therapists in the acute care context and that's the context where I worked for many years. But I'd like to say that they all get that but you're right. People get caught up in the fact that we only have a few days with these people, and we have a little bit of time, and we don't necessarily have time to devote to finding out who that individual is but what you're saying is that's central to being successful in helping them move forward with anything. So I really appreciate that as a grounding starting point and it really makes sense why, we're going to have a conversation today about what we're going to have a conversation about. I know Lauren, we talked about a couple of different topics. One being your passion for working with parents, and the topic of parenting with aphasia and that might seem like a leap to talk about that, and person centered approaches to primary progressive aphasia but when we think about that grounding principle of meaning, the person where they're at finding out what they value, I think it's going to be easy for our listeners to tie those pieces together.
Lauren Schwabish: Definitely cause it's ultimately about a family, right? And it's not just a person with aphasia, but the person with aphasia exists in some sort of family unit, whether it's a partner, a friend, neighbors, kids, grandkids. And so, yeah, one of the things I have been privileged to be in is those 2 spaces? So I think I think, yeah, we can tie them together. And also just to hear that what this looks like with kind of 2 different sort of different populations, you know, thinking about parents with aphasia where the prognosis is typically so favorable, right? It's just lots and lots of improvement. They're typically younger, you know, we're seeing gains and everyone feels fairly optimistic, and that person with Ppa is going in a different direction. Right? But person-centered approaches are vital for each.
Jerry Hoepner: Yeah, that I totally agree. Family is what ties these topics together, and I'm sure we can think of a whole bunch of other related little niches of therapy that are tied together by family as well. So I'm excited to jump into this conversation. And I'm gonna begin with talking a little bit about the topic of parenting with aphasia, just a really interesting and important topic. So why is it so important to have communication groups or parents with aphasia?
Lauren Schwabish: I why, I would say I'm a parent, so I can, I could speak with experience, that parenting itself is a 24/7 situation. And so when you have a parent who's been very suddenly affected by aphasia it is the one task, you know, work goes on hold. And sometimes, you know, operations in the community go on hold because the person's recuperating. But parenting really doesn't ever stop you know, children with, you know, whose parents have had a stroke or brain injury. You know they're up in the hospital. They're part of the therapy process hopefully, and they're in the community, or they're back at home with that individual and so I do think it's really important to give people who are raising children, and I will say, you know, we have lots of people who have raised their children. They're still a parent with aphasia. But this is sort of specifying that these are people who are in the active process of raising younger children and those are the people that are in the communication group that I run through the National Phase Association. When I speak to those parents they really are. They are seeking a safe and compassionate environment to discuss how to raise kids right? And that can range from talking about, how do you discipline a kid when you have aphasia, how do you talk to the teachers that a parent teacher conference? You know, how do you engage? How do you re engage your parenting skills when they've been sort of taken over by family members necessarily. But how do you sort of reenter that role again? And I don't know that for the parents that come to my group. They don't have that in their own parenting community, right? So, the friends that they had who were parents prior to their aphasia. They're not necessarily the same fit as other parents who have aphasia. So, I think that the group environment that we've cultivated is that safe space to talk about, you know, and highs and lows of parenting. Let's face it. Parenting is really hard. So sometimes it's, you know. Everyone just wants a place to kind of vent and again when you're venting with aphasia, it's not always smooth, but it feels really good, just like parents who don't have aphasia.
Jerry Hoepner: Yeah, what a what a terrific summary. And in response to that question, I I'm just gonna go back to the one of your earlier statements, because I think this is so true. When we think about someone in the rehabilitation process work stops and the community services, and all of those kinds of things stop, or at least they change significantly. But parenting doesn't stop as a fellow parent I can. I can guarantee I've got kids who are in college and just outside of college, and parenting still doesn't stop, but to be in the thick of raising small children. That that's definitely a a unique challenge so speaking of that, what are the unique challenges and needs of a person with aphasia who's also raising a child.
Lauren Schwabish: Yeah, you know, when I think about the things that the parents in my group have raised, it's really I mean, it runs the gamut you know some of it is how do you read a book to your child when you cannot read how do you, you know, manage things like. There's one gentleman who's awesome. He had a stroke when his youngest daughter was out, and I think she was like a newborn, or she was essentially an infant. And you know, how do you navigate watching them start out? He was joking kind of at the same level language wise and then she's just accelerating. And you know, how do you navigate that? So, as the child's language is growing? How do you facilitate your own child's language development. We've had one of our survivors is she's made tremendous progress. Many years since she had her stroke. She had a situation where her daughter within high school, and there was a child who committed suicide, and she said, I don't know how to talk about this with my child, but I know I need to right, and that kind of stopped me and my tracks as a parent of high schoolers to think. Gosh! This isn't so much about the aphasia. But how carefully we have to word a conversation like that. Right? So it's really having those serious high stakes conversations. And then some of it's, you know, not as heavy, not as hard. It's kind of how do you, How do you reintegrate yourself with, you know, kids at the playground. How does your kid explain aphasia to their friend who's coming over for a play date, you know. How do you ween a baby, you know, sort of like all different things. So this is where it's sort of like, is it a group for people with aphasia. Is it a parenting group? Well, it's kind of everything, because sometimes we just wanna kind of talk about stuff. And it's you know, last month we talked about, you know, if I gave you a plane ticket and you could go on vacation, you know, where would you go? And would you bring your kids or not? Which was fun. Some people were like, of course, it bring my kids, and some people are like, Heck! No, I'm leaving them at home. I'm going on vacation by myself. So it's really fun. It kind of is the group itself. We really start out with 2 principles, which is what is I have these little smiley face cards, you know what's making you happy and what's kind of a struggle, or, you know, making you feel sort of mad. And that's just a really nice place to launch from.
Jerry Hoepner: Yeah, wow, terrific. And one of the things I kept thinking when you described the loss of kind of kinship or a connection between themselves and other parents who don't have aphasia, who are a parenting, I'm wondering about the relationships between the different parents with aphasia and each other from a peer standpoint. And what that looks like.
Lauren Schwabish: Yeah, one of the women. She's in North Carolina, and she found the group after it had been running for a couple of months, and she says every time she's like, I'm just so glad you guys are out here because I did not know that there were other people like me. So, some of it is just seeing that there's young people who also have aphasia, who are also raising kids. So, some of it's just that environment. One of the things that I think was the most incredible was there's a speech pathologist who's in Texas who runs or she's in a program that think it's sort of an inpatient rehab a residential program. It sounds incredible. She had 3 or 4 young parents with aphasia who had recently come there, and she logged on from that facility and those folks were able to see survivors from, you know, one year, 2 years, 5 years, 7 years. And so, some of it is be able to show people who are just learning, you know, just getting a couple of words. You know, may be able to say the name of their child. Maybe you know one or 2 word phrases to see and experience what recovery looks like. And that was amazing. And one of the women who is in the program has since discharged home. And now she logs on, and it's fun to see her recovering quickly. But I just think that sense of like, and you know we hear it all the time like you just have to keep going. It is a marathon, it is. It is arduous right? And so for them to have that support and the spectrum of recovery. I think that's one of the things that is the most meaningful. Because, you know, it's of course, post direct depression, anxiety, especially for a younger survivor who's not only lost you know their language abilities, but probably it's also facing the fact that they can't return to work. That was one of our topics a couple of months ago. It was someone who was like, yeah, I hope I can get back to work and then come to find out the whole group shared, you know what they used to do for work, and a large majority of them. In fact, I think all of them, you know, in addition to parenting being tough, is they've lost their careers. Which is also a challenging topic. But, at the other hand, some of those long-term survivors say, but you know what? Instead of working, I'm able of, you know, volunteer at my kids school. I'm cheering on the sidelines. I'm attending that concert, and she said, I don't know that I would have had that if I was working. So, you know, I think the silver lining aspect is great, too.
Jerry Hoepner: Yeah, absolutely. I think it's so critical. I mean, even outside of the the topic of parenting with aphasia, to have to see people who are at different points along the recovery. And maybe this will come up when we talk about primary, progressive aphasia, too. But, for example, one of the things that we see at aphasia camp is often that people will identify with someone who's a little bit further along in the journey, and they might take sort of a mentorship kind of a role just to be able to say, this is what's coming. And you know, things get better and a little bit easier to handle. It's so positive from that standpoint. But I've seen the reverse true as well to be able to say. You know, this is a person who's longer, or, you know, further along on their primary progressive aphasia journey, and to be able to just know. Okay, so this is coming and I can kind of ground myself and prepare myself for these things. I think there's something really valuable about being able to see that continuum like you described. So
Lauren Schwabish: agreed. And just that sense, you're not alone. You're not the only one who has this experience.
Jerry Hoepner: I'm interested. So I mentioned that sometimes there's these pairings of people along the continuum. Do you see those relationships growing? And do people connect with each other outside of group or have particularly close connections with someone within the group.
Lauren Schwabish: Yeah, well, I think the group is pretty new. So, we're sort of cultivating that I would say, one of the things, though, is, there's one woman shared that now that her kids this was back in, I think August, her kids had gone back to school, and she was like, I don't know what to do with my time. And another survivor basically sent me a list of ideas. She's like a support group Guru. She attends some in the Uk, some here. She really knew of a ton of resources, and she sent those to me to pass on to this other individual. So that's probably a great example of, you know, one person wanting to really cheer on the other one. There's that same woman who offered the resources is lives in the Chicago land area, and we had a one person who moved to that area was really fun. She ended up giving us a tour of her house on our in our group, which is really great. But that was a connection we made where we said, Hey, you know what? What are you know, the the strokes, survivor communities like in that area in Chicago. So that was really neat, too. So I think you know anytime I feel as a facilitator when I have a chance to match someone to either to peer to peer, or just for resources. In general. You know, one woman is like, I really wanna read. She has a 14-year-old, and she's just like there's a lot of reading that goes on with like middle school and high school and so we were just sort of like troubleshooting together, you know, on the side, just hey, you know, here's an audio book that we might want to try or here's something you could pair with an audio book. So, you know, it's it's just we have a space to share how you're feeling resources, I think, become evident when you're in that supportive environment.
Jerry Hoepner: Yeah, absolutely. I think those are perfect great examples of that connection between people and that resource and mentorship that they can provide to one another one another. I was kind of internally laughing when you you mentioned the middle schooler with reading, because I was thinking about when your children reach high school and college, and they begin to pass you up in terms of knowledge and intelligence. That's a hard time for any parent. Definitely for someone with aphasia or we're even talking about how to handle like cell phones and social media and technology. And like you think of how fast pace. That is, I can barely keep up. How does someone who has, you know, issues, maybe even with like sensory overload you know where there's video games going on and when you're really at that point, and you have to say something how do you find the words, you know? And so actually, one of our, you know, again, longer term survivors like, you know what? I just text my kids. And we have a couple of emojis where they know what I'm saying, you know. So I think it's really neat. And that way, too. It's just sharing those examples of like modern day parenting. And what does it look like when you have aphasia? Yeah, that's fantastic. One of the things I was going to ask you about is the kinds of topics that come up. But you've shared a few social media and how to support someone with reading and all of those topics. But what other kinds of topics typically come up in these groups.
Lauren Schwabish: I think for the parenting group, it's really about, how do you keep your language skills going? Because I think a lot of these folks are, you know, not necessarily continuing to receive skilled interventions from speech pathologists. And so some of it is. Just try to like, how do I use my environment? Or how do I have strategies to sort of resume participation? There was one woman early on in the group, so it was a smaller group and she was going to meetings with her High School senior about college and graduation. And so we were sort of just coming up with, like, what are some words that you'd wanna have ready, you know, application. And you know, tuition. And so even just kind of brainstorming a way to support her participation in that. So that was something that came up. A lot of it is sort of what are your kids excited about? And I think that that's one of the things I always close that group with is gratitude. Just because it's such a wonderful it's brain, healthy activity. And almost universally the parents are talking about their kids. They're grateful for their kids. They're grateful that they got to you know that their kid was well behaved at school, or they're grateful that they got to go on vacation, or they're grateful that they want to swim meet. So sometimes it's also a chance to brag, you know, to really shine a light on the things that your kid is doing. You know, that's a fun thing to be able to do. And again, in a fast-paced environment, you know, when they're with their neighbors, or they're with the kids at, you know, other parents at school things just go quickly. And so when it's a time to just slow down, and we'll just sort of popcorn it around the Zoom group. Where everyone has a chance to just share something that their kid is up to and that's been really neat to one of our members is from Canada in BC, and so we didn't really know, you know, geographically where he was. So I was. You know we were looking at the map, and we were figuring out where everyone else is from, too. So sometimes it is just it's about that community and some hot topics that are coming up. Weather was one of them where everyone was talking about you know the wildfires where he was, or how do you, parents when it's so hot out. You know, it's really typical struggles. It's just, in a way, it's probably not that different from a normal parenting conversation. We just use language support and give people tools. They need to be successful contributors to that conversation.
Jerry Hoepner: That's a pretty strong litmus test for being meaningful and person centered to be able to say, it's just the stuff that every parent talks about. Now, this is just a community that scaffolds that for people with aphasia, so that they are a part of those conversations and can be a part of those conversations I love that that's fantastic. Yeah, really wonderful. Well, knowing what you know now, and other, what other resources would you like to see available? To this community of individuals with aphasia from a parenting standpoint? Your wish list.
Lauren Schwabish: We talk about this, my wish list. So one of the things that I'm I'm trying to, you know. It's hard because we only meet once a month. I wish we could meet, you know, more routinely, but is, of course, when you have kids it's really hard to plan, you know and get together. But we've talked about this over. Several different meetings is, what would we like to have available? I think certainly books or resources videos that are for parenting, about parenting that are aphasia friendly. So like, how do you, parent? You know a toddler? I know, I read books when I was raising my kids. You know, I read books currently about like teenagers and mental health. You know what resources are available that are aphasia friendly. And where can we find those books and do those books exist? And can we write those books? So some of it is just typical parenting advice but made aphasia friendly. That's something I would love to see. And we have a couple of different books that people have recommended, and I think we said we could link those in the show notes so people could try to. You know, find those. But of course, this is probably one of those moments where someone will get inspired and create them, you know, create that resource in the future. I would like to have some tip sheets again, based on what my parents in with aphasia, have recommended about how to engage in conversation in the community when it comes to parenting. So, for example, how do you talk to the pediatrician during a checkup? Right? How do you make sure that your voice is heard, that you can fulfill that role of parents versus someone who's just sitting in the room when there's you know, someone else speaking? How do you talk to a teacher at a parent-teacher conference? So some of it I think it'd be again scripts or recommendations or advocacy. I have a like we've all seen them sort of. I have aphasia, you know, cards, and we I've shared that with that group just to try to say, like part of your job is to be a presence in the school community, right? So like, how do you do that? So even like a guide? Again aphasia, friendly, something that would allow them to participate in these pretty routine parenting situations. And then I think, what I'd really love, and I don't know, you know. I hope someone out there is thinking about. This, too, is to think about how to record stories or videos with just those words of support. So that if you're out there and you have a young parent with aphasia on your unit in a hospital where you could go to Youtube, or you could go somewhere and say, Hey, you know what? Here's words of wisdom from people who've been where you are. If I could record a snippet of the conversations that we have, or the words of wisdom that one parent passes on to another. It would be so. I think, reassuring in a really scary time I think it would be inspiring. You know nothing that's too heavy a lift that doesn't need to be, you know, a feature like film, but just something that would be a collection of stories that someone could watch and just gain a little bit of sense of, okay, you know I'm not alone and people have done this before me, and they got better. And I can, too.
Jerry Hoepner: Yeah, that seems to be a recurring theme that I'm not alone, and I can connect with people that really get this. Yeah. II love your wish list, and I hope that some of our listeners are inspired to create those resources. And you know, as we were talking, II just couldn't help myself. I jumped on to Google Scholar, and I wanted to see what was out there for research in this area. There's not a lot, and I know that Molly Manning has written a little bit about this, and I think Brooke Ryan has done a little bit of work recently, but there's not a ton out there. So for all of you academics out there, too. Like what a terrific topic! For someone to research into, to learn more about this. So I'd love to get those testimonials and words of parents out there as well. So feel like we're just scratching the surface of this, and a lot of work needs to be done. But what a great kind of call to action! That the need for groups for parents with aphasia. So I really love, love that conversation, and thank you. Anything else that we're missing, or we should add, before we move on. Regarding.
Lauren Schwabish: No, it's like, I said, running, the group has been wonderful. And I just think, if you even have 2 people, you know, it doesn't take like we have people from all over the country that come to the National Phase Association meeting once a month, you know, the second Wednesday of the month. But it doesn't take too much to operate it, you know, Zoom Link. And so I think even Matching, or you know, Peer matching someone else just to recognize that this is a very this is a population that's gonna live with aphasia for a long time, and you know they're the needs are high. And so even if you can think about a peer mentor, or some kind of connect in your greater community. You know, this is really a population that's thirsty for it, and they want it, and they will. They will pursue it on their own. Once you sort link them up together, and then hopefully, the rest of us can come up with some great resources to fulfill that. You know that that connection.
Jerry Hoepner: Yeah, excellent. And certainly, if there are people listening, thinking, what should I do? I want to do something related to parents. Wow! What an opportunity to step into! There's plenty of plenty of room for that support to go around. So really inspiring. Lauren, if it's okay, I'm gonna shift gears and talk about a very different conversation. But one that, we said, is definitely linked through that kind of family. Principle, family centered principle. And that's the conversation about person centered care for individuals with primary, progressive aphasia. Can you begin by just sharing a little bit about your perspective? What drives you, your underlying theories for this approach?
Lauren Schwabish: Yes, and I will say, for my, you know, 23 years of experience. I am very new in the Ppa space, mostly because I was working in the hospital system, and that's not where these individuals are found, you know. So for me. Once I started my practice, and someone said, Do you treat primary, progressive aphasia. The answer was, of course, yes, but then it was very much a well, how right? How do I do this? And so diving into you know, all sorts of education. Looking at, you know, resources that are available. I’ve really appreciated some of the work on the raise framework in terms of really not thinking so much about all of the testing, but really thinking about what does this individual need to do? And how can I identify as much personally meaningful stimuli as possible, because that's the only thing we should be focusing on, right? So I think to that end also, it really clarifies what my approaches and forces me to be as efficient as possible, and then really be flexible. There's one gentleman in particular I'm thinking about where, you know, we've started out, and he didn't really require too much in the way of language support. So it was more like, what do you want to talk about and maintaining, you know, a multimodal language, practice opportunities. And then, as things have gone on and change, we've really run the gamut from like starting, you know, starting with an iPad, and you know, a higher tech, aac option, and then kind of seeing that that's not really going very well, or it is a little too challenging for this particular family, and then very quickly pivoting to something that's more accessible. So yeah, it's to me. It is it is a family centered situation, and you know it's interesting.I have a wonderful aphasia center near me, and I love them, and I refer everyone to them. But they are very much clear that Ppa and sort of that aphasia community center feeling doesn't really work well in their experience. And so I brought this, you know, again to the aphasia access community to, you know, at the Leadership Summit, and said, You know, how does this work? And it's just really complicated. And what you'd said earlier about, you know a family being able to look ahead and say, okay, this is what I want. I have found in the Ppa clients that I've had. They actually avoid that because I think they don't want to see it. It's too much, they've said, you know. And so I tried to be a little bit of a matchmaker. I had 2 gentlemen, both with primary, progressive aphasia, you know, scientists very loving wives, you know, really like they were so ideally suited to connect and it was almost like they didn't want to see this other individual, even though it would have been wonderful for them to connect there. I just found and this is probably happened in, you know, 75% of the cases I've had so far, they are reluctant to see someone else with. Ppa.
Jerry Hoepner: yeah, interesting and I think that's one of those challenging things where we have to like your principle of matchmaking, and where we have to think about how we get there, right? Because there’s always things that we don't want to talk about, or we want to avoid to some extent. But there's always a a bit of us who knows there's a need for that, too, and finding ways to make that threshold of building those bonds and those relationships is definitely a part of that even if it doesn't start out with. Hey, talk about what primary progressive aphasia looks like further down the road, but just to be able to build some of those peer connections?
Lauren Schwabish: and not know that, or know that you're not alone. I think that that idea that we talked about with families as well. So yeah. And what I found probably is a more successful avenue is really sustaining those family connections. So that's where I found that sometimes the community of course I want them to be able to see someone who's, you know, just as bright, who also has aphasia where things are changing. But what I found greater success in is looking to the sort of family as a community and saying, What can we really do in this contact, so that you can continue to, you know, ask your grandkids about, you know how school is going, or give advice to your you know newlywed son about you know life nowadays, you know. So, some of it is really trying to figure out how can I use those family connections? And then to me and anyone who knows Ppa knows it's so much about counseling. So really, being a provider of I would say hope and I think that that's one of the things that really is important is to say we can still have participation, meaningful life activities, even though things are getting to look a little different. And so the one family I'm thinking about. They have this beautiful vacation house on the bay in Ver. In Virginia, and you know they love to go on vacations like this is a family that lives a great life and they really feel that they have to kind of reel it in, because, oh, my gosh! You know Dad has aphasia, and you know what if? What if? What if? And my perspective is? No, we need to make sure he's still going on vacation. And here's a communication tool, so that you know we can do that safely. Or here's how we're gonna navigate his communication in that situation so that he can participate. And that's probably been a great source of creativity. And also kind of success. Is the family as community?
Jerry Hoepner: Yeah, absolutely involving those family members and allowing them to make those connections, as it, you know, as if they're comfortable. And that principle of hope cannot be overstated right? Just how important that is to keep people engaged, because as soon as you start thinking about the downside that's when you want to just withdraw and kind of close in on yourself. But that hope is the light that people need to see in that moment. So completely agree. From your perspective, why is this person centered approach so crucial for a person with primary, progressive aphasia and their family.
Lauren Schwabish: I think, as we see sort of the deterioration that comes. you know there's so many there's so much value. And really looking at who you're you know who you are. Who is this individual? And so, being able to remain connected to things. They are passionate about friendships they've had forever. You know things that really get them excited. I have a gentleman who is like a he was a food researcher, a food scientist, and he actually absolutely loved being in this professor role. And you know, all of a sudden. He's his family is, you know, very attentive, and they're, you know, bustling around and doing all these things for him, and he just lights up when he gets an opportunity to explain a scientific concept or look at a scientific journal, or attend a conference like we encouraged him to go, and he attended a conference, and we practice the names of the researchers he was going to meet. And you know questions he might be able to ask and I think so much of it is. You know we're looking at someone who's essentially fading away, and that's so scary. And so if I can say, who are you? You know what's important about you? What should I know? What should your family maintain? And then we build a communication support system around that I think it allows them to continue to see the individual, even though there's a neurodegenerative process. And so things like I had one client who wrote his own obituary, and in doing that he gathered all of his. You know he was he had a lengthy Cv. He had done all this wonderful work, and so it was a chance for him, and it was of his own request he wanted to do this and I just said, Let's go because it was a chance for him to relive his professional connections. It was a chance for him. Talk about you know, areas of study where he had contributed. So to me, it's really about preserving the identity and recognizing and being able to have a again a tangible communication book, memory book, whatever they want to call it. Practice words. You know, stimuli photos. Anything that really says this is who I am And so that remains a touchstone where families can say, you know, even if the level of support changes over time, we still can have that person and be that person.
Jerry Hoepner: Yeah, II think that's just another one of those grounding principles. I I'm not making fun of you. When I say this, you've said who I am or who you are multiple times. And and that focus on identity is so crucial. And I think another piece I've been really into reading work on personhood, and that idea that yep, this person is fading. Their cognitive and language abilities are changing but they're still intelligent human being inside. There's still someone who deserves your time and attention, and still has many of the thoughts and kind of knowledge of their life. I think really important for families, and anyone who interacts with them to just recognize that personhood and and that identity of who they are.
Lauren Schwabish: it's also so easy to see what's going wrong or what could go wrong, that I think, also maintaining someone's competency and finding ways to reveal competency to families is so important. So like my one of my clients is much better at writing than he is at initiating verbal language, and so for him we haven't texting people right? And they are sort of like rolling their eyes like he's got his phone out again. And I'm like, yeah, cause that's how he's gonna communicate with you. And he will text me pictures and videos from family gatherings. And you know, it's really become a tool that shows his competence. And so you know, that's another opportunity. And why skilled intervention is so important even in the scheme of neurodegenerative disease is because there's always something that we can do to show that person and show what they're able to do. We just have to think of the way to do it.
Jerry Hoepner: Yeah, absolutely. I love that. You came to Aura Kagan's principles of acknowledging and revealing competence in a time when someone is like you said, fading and and losing some abilities even more important that we hold onto those principles. So I'm really interested. What does that look like in a session? What do your sessions? How do they look?
Lauren Schwabish: Yeah, it's every session looks a little bit different. Some of it is. I just want them to introduce themselves to me. And that's usually what I'll say is, you know I'm new to you. What can you show me? What can you tell me? And what can I look around in your environment. And I'm so fortunate in the private practice I've constructed is I'm a mobile therapist. And so I get to go to people's homes. And you know, even just being in that space can tell you so much and so you know, trying to really invite opportunities. Knowing how to ask the right questions. You know a lot of those carefully constructed open ended questions and then trying strategies here and there to see what really helps support someone's language. So I have one gentleman who he's he loves cricket and you know there's really no cricket on when I'm at his house but he and I have discovered over working together that having written notes as I'm listening to him, and I'm capturing, you know, content words and keywords he's able to say I write them down, and then he and I kind of have them on the table in front of us And so with cricket, He wanted to tell me. I said, I've you know I've played it like long ago. I really don't ever get to see it. What can you tell me? What can you show me? And then giving him a a vehicle to do? That drawing was a perfect way for him to show. You know, and this is a gentleman who's no longer writing. He's actually not really using any texting, or, you know, ipad, he has all of these devices. Unfortunately, not a lot of them are. Does he really feel comfortable if he could engage with them? But again, it's about what he would like to do. But a pen and paper was so effective and so with that, as he's drawing the sort of circles, and and you know the the lie out of the pitch of cricket. He's suddenly writing numbers, you know, and then he's able to point to those numbers and express those to me. So that's one version. One of the things that I talked about at the aphasia access summit and was really fun is looking at photos on the phone. So another gentleman the one with the big family, and he's always taking pictures. And so what we had discovered was this captioning strategy where I could just swipe up with him, and because his writing is a strength, he's then able to put in the names or events of family members into the photos. And that's been really fun. So that we're really trying to find that strategy where he can continue to use the stronger modality in the context of ample stimuli, because this guy takes pictures of everything. And then, as he's sort of declined a lot of it is trying to meet the needs of the family, so making sure that they know what communication supports are. Some of it's just thinking about safety, too. You know, making sure that right off the bat, this person has some sort of identifier on them. For stuff that's starting to get lost. How do we use technology, you know. Air tags and tiles and all those cool things. How do we maintain his independence and community? And that's been tricky lately is, you know, providing education resources related to driving. And how do we know when it's time to stop driving? You know these are sort of things where I have become just a trusted advisor to the family. And so, if I have a resource, I think that's important that we recognize our roles look so different in these sessions. And that's okay, because what we're doing is we're providing again, person center care trying to highlight what their priorities are and support the family. So that they can make that happen too.
Jerry Hoepner: Absolutely. Since the aphasia access summit that swiping up for the captions is something that I do quite a bit lot of my people. So I really appreciate that. I'm glad you brought that up again. Yeah, I feel like this has really brought us full circle, and with that emphasis on the family and the person as the core. Really. I mean family identity, and what that individual wants and needs to do what drives them. Seems to be at the core of these approaches, and that definitely aligns with what aphasia access and the life participation approach is trying to accomplish. So thank you for your insights and and creative ideas about this anything that we missed in terms of the discussion about primary, progressive aphasia or parenting.
Lauren Schwabish: I will just say that as someone who's sort of like done this by my gut instinct. It's so wonderful when I can go to the research. Not so much for the parenting is like you said, there's you know I it's not a ton of ample of evidence body of evidence yet, but it is so reassuring to have access to meaningful research that really supports You know just an Lpa approach it as a clinician like boots on the ground. I've really valued that I've loved podcasts and resources. I've had access to in terms of counseling. I think validating that counseling is important. I'm grateful to the fact that you know we even payers like Medicare. You know that there's a space now for the role of a skilled speech pathologist to follow along and to perform therapy over the course of a neuro, degenerative condition. You know, I feel like sometimes I've heard. Oh, you know, I think I'm guilty of this when I was working in the hospital setting, and someone would come in with some sort of acute process but then there would be dementia. I really feel like I was like well, they can't learn, or you know they I was so dismissive of someone's capacity. And I have changed completely in terms of being able to say, you know what there's individuals I work with, whether it's Ppa or another dementia process. Just to be able to say there's always value in finding a communication system or communication tool to really allow that person to connect with whomever they want to and so I think the fact is that I'm in a community that, you know is is interested in that. I have a practice that is, you know, working well because of that I'm able to get paid by payers because of that. So I really think it’s important for people to recognize that. We can fulfill such a valuable role and there's actually wonderful resources out there that will justify this approach.
Jerry Hoepner: Totally agree. Yeah, there's always value in fostering participation. Whether that's going to help someone recover, or whether that's gonna help them. You know, in their in their decline gracefully, and to remain engaged as long as they can so totally agree. Well, thank you, Lauren, this has been a fantastic conversation. I know our listeners are gonna value your clinical insights. So thank you. And it's been really nice talking with you.
Lauren Schwabish: Oh, it's been a joy. Thank you so much.
Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.
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Interviewer info
Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.
In this episode, Lyssa Rome interviews Kate Meredith about using concepts from family and systemic psychotherapy to help people with aphasia and their families.
Guest info
Kate Meredith is a Family and Systemic Psychotherapist, working for the NHS and in independent practice in South Wales. She is completing a Professional Doctorate in Systemic Practice.
Kate worked for 15 years as a Speech and Language Therapist, working with adults with acquired communication difficulties. Kate's dual training enables her to support families and individuals with the impact of these changes on family and social relationships.
Kate has studied at University College London, King's College London and the University of Bedfordshire. Kate worked with Giles Yeates to publish Psychotherapy and Aphasia: Interventions for Emotional Wellbeing and Relationships (Meredith, Kate. H. and Yeates, Giles. N. 2020). Kate also presented at the American Speech-Language-Hearing Association International Convention in November 2022.Listener Take-aways
In today’s episode you will:
Describe the importance of narrative for helping families cope with aphasia. Understand how speech-language pathologists can use genograms and ecomaps to support their LPAA care. Learn why the way speech therapists talk about aphasia matters.Edited show notes
Lyssa Rome
Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication impairments in my LPAA-focused private practice. I'm also a member of the Aphasia access podcast working group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature Kate Meredith. Kate is a family and systemic psychotherapist, working for the NHS and in independent practice in South Wales. She is completing a professional doctorate in systemic practice.
Kate was a Speech and Language Therapist for 15 years, working with adults with acquired communication difficulties. Her dual training enables her to support families and individuals with the impact of these changes on family and social relationships.
Kate has studied at University College London, King's College London, and the University of Bedfordshire. Kate worked with Giles Yeates to publish Psychotherapy and Aphasia: Interventions for Emotional Wellbeing and Relationships. Kate also presented at the ASHA convention in November 2022.Kate Meredith, welcome to the podcast. I'm so glad to be talking with you.
Kate Meredith
Thank you for having me. I'm really glad to be here.
Lyssa Rome
So to start with, I'm curious about your transition from speech language pathology, or speech language therapy, into family therapy. What led you to make that change?
Kate Meredith
So I loved working as a speech language therapist or a speech language pathologist, as you would say in the US. It was great. I mainly worked in a rehabilitation setting, and what that enabled me to see, from the off, was the changes to people’s relationships. On a daily basis, I was witnessing people coming into the center, trying to figure out who they were in relationship to each other, and that got me really, really curious. The more I thought about it, the more I thought about the ask that we put on partners and family members in those settings—so whether it’s supporting people with toileting or washing, feeding or swallowing, there’s so much change that takes place.
And it really made me think: What about the relationships? Are we asking about the change in relationships? Are we asking what it feels like for partners to have different roles, to have different aspects to the way they do their relationships? And as a speech language therapist, I was thinking: Okay, what does this person need in terms of their communication skills, what do they need on the ward? Do they need to be able to indicate whether they’re hungry or thirsty or in pain? And all of that was important. But it also kept me thinking: What would matter most to me? If I were in this situation, if I had aphasia, if I was having difficulties with my communication, what would be the biggest impact for me? And it just kept coming back to relationships for me.
Now, I worked in the multidisciplinary team, with neuropsychologists and physios and OTs, nurses, healthcare support workers, doctors—great, great teams. But I wasn't sure that any of us really felt like we had the remit or the focus to think about people's relationships after brain injury.
When I was working in the community for a while, I started working with a neuropsychologist, who started asking questions about this with a couple that I was working with alongside him. And I said to him afterwards, “I loved those questions. I'm so glad you're asking those questions. I think about this all the time.” And he said, “Well, I wasn't doing neuropsychology there, I was doing family therapy.” So I started looking into it. And when I started exploring it, and when I got onto the course, straightaway, I thought, I think that speech and language therapists, speech language pathologists have got a really unique set of skills here that matches so well with the skills that are needed in family and systemic psychotherapy.
So starting the training, loved the training straightaway. And I always hoped that I'd be able to do something and brain injury with it, but then, when I found a job in family therapy, in a different context, actually, working with children, adolescents in mental health services, I kind of started down that direction, and love it. But I've really held on in my private practice, where I'm not working as a speech language therapist anymore. But most of my private practice work is with adults who have a communication disorder. And I find that so enriching. I just love it. And I also do a little bit of writing a little bit of presenting. And that's kind of where I got to here.
Lyssa Rome
It sounds like you very organically saw this connection between what families, people with acquired brain injuries and acquired communication disorders were dealing with, and how family and systemic therapy might be able to help them live better with their conditions. So I want to back up for a moment and ask you to define for us what is family and systemic therapy for, say, SLPs, who aren't familiar with that term?
Kate Meredith
Absolutely, because I wasn't either. I think it's more popular in certain contexts of healthcare than in others. So in the UK, it just wasn't in brain injury anywhere. So I'd never heard of it. There are different names for family and systemic psychotherapy—so some people call it systemic psychotherapy, some people call it family therapy, sometimes it's a mixture, which doesn't really help with the difficulties that people have in understanding what it is. But really what it is, is about helping people who are in relationships with each other, work together to achieve change. The idea being that change happens through relationships, rather than individuals just making a change that can that can affect everything.
The big principle of it is really that problems aren't located in people. Problems and people are not the same thing. People don't just have ownership or become the problem, they very often happen between people. So who takes responsibility for that change, if actually, the problem is happening between two people, or more than two people?
So family and systemic psychotherapy thinks about actually how relationships can support people, and how improving relationships can reduce problems and can reduce symptoms. So we're trying to provide a really safe space in family therapy and systemic psychotherapy, where people can communicate, they can make efforts to understand each other in a different way. We can think about strengths—it's very, very strengths based—but also about what the needs are, what the emotions are, and how people can be a resource for each other. So rather than thinking, you need to go and get this fixed, or you need this medication, it's actually: What can happen in the relationships that will bring about the change?
Lyssa Rome
That brings to mind a really interesting conversation that I was able to have, as part of this podcast, several episodes ago, with Dr. Marie-Christine Hallé, who really emphasized this idea that aphasia is a family thing, it's not something that just happens to the person with aphasia, and what you're describing, this idea of locating the problem, sort of outside of the person with with the brain injury and situating it within the family context, I think, is a really powerful way to think about it.
So you've been bringing these ideas from family therapy to speech language therapists, speech language pathologists, working with people with communication disorders. And today, our plan is to talk some more about some of these concepts from family or systemic therapy that can be useful for SLPs, who are working, particularly within the Life Participation Approach to Aphasia. So can you say a little bit more about what you've been doing to bring these ideas to SLPs?
Kate Meredith
Yeah, absolutely. So for me, this is this is really exciting. What I really want to help people understand, I guess, a lot of people do already, but actually, if relationships are what matters to the person, we're working with, then that's everyone's business. You know, we don't need to think of it as being something that we don't have the right to ask about. So of course, you can always train as a family and systemic psychotherapist. But as a speech and language pathologist, there are also many other things that you can do to support people's relationships after brain injury and with aphasia. And the feedback that I get from clients I work with now, from clients I've worked with in the past, is that it's really helpful to have someone who understands neurology, who understands aphasia and what can support communication alongside the permission in those sessions to make the relationships the focus. So this is really important for people, really meaningful for people. So what I guess I'm trying to do is get that message out there—make this your business, because we've got the skills.
Lyssa Rome
I first became aware of your work with your presentation at ASHA in November 2022, and you talked about ways that speech therapists could make it our work. Specifically, you talked about—one of the things you talked about—was narrative therapy, and the power of stories to help people make sense of their situation and to shape their reality. We've touched on this earlier, but part of that had to do with this idea of externalizing the communication disorder, in this case, the aphasia. So I wondered if you could go into that a little bit more for us.
Kate Meredith
Absolutely. It's one of my favorite approaches. So I'd be delighted to talk more about it. So narrative therapy is based in a kind of philosophy of social constructionism, which I won't go into too much here. But essentially, it's kind of an epistemology, or a way of understanding knowledge that underpins the doctorate I'm doing. And it really kind of lends itself to thinking about truth as being a product of social processes, rather than there being one objective truth. So that gets a bit philosophical.
But essentially, what we're thinking about here is that when we are in conversation with each other, which is largely language-based, our conversations support the beliefs that we have and our views of the world. And these events that we are in conversation talking about, they are subjectively perceived. And we link those together into stories that make sense to us. But they're rarely the whole story.
Those of us who have the power to tell these stories, to talk about events and the way that we see them, those of us that have got the loudest voices, the most power, we get to shape the stories that get told and retold. And that, in social constructionist terms, means that we get to shape truth, and we get to shape reality and how it's shared in our communities, which is a privilege that not everyone has.
When we when we do this we see, in narrative therapy we believe, that the stories that fit get retold. They become very dominant. They become the dominant narratives in our societies and in our communities. And the stories that don't fit with that dominant narrative get lost. We would call those subjugated narratives. Now, when I was learning about this in my first year of training in systemic psychotherapy, I just had this epiphany, this kind of light bulb moment of, what does this mean for the people I've just left on the ward and have aphasia, and in the most literal sense, don't have a voice. It just really kind of lit off so many sparks in my brain.
So really thinking about the place of power in this and and how people with aphasia don't get a chance to input into certain stories. I think that we can all probably think about stories that have been told about us in the past that don't really fit for us very well—it might be that we're a rubbish driver, it might be that we're really scatty or that we're selfish or that we're cranky in the morning. You know, there's lots of stories that we don't particularly like that might get told about us. And can we challenge those? Can we give an alternative version and say, well actually is not quite the whole truth and do remember this time? And actually that happened once or twice, but I have been driving for I don't know 30 years or whatever it is. If we can challenge those, then we get to kind of address that narrative and have an influence over it. But if we can't challenge those narratives about us, then we feel less well. We feel subjugated by that.
So I really started to think: Well, what are the options that are available to somebody with aphasia to tell the stories that fit for them? And how as speech and language pathologists do we support them to develop a rich narrative that fits more, that is more congruent with who they are and how they see themselves? So narrative therapy is all about this. Narrative therapy has got a series of kind of parts to it. Essentially, the first thing we're doing is hearing the problem and whatever form people can communicate that to us. We're listening, we're validating, and we need to stay with that. We need to stay with that part of the process before moving on. And when we're doing that, we're thinking about the language that people are using, the way that they're expressing it, because these things are really important later on.
The externalization part of that is about separating the problem out from the person. So the problem and the person are not the same thing. That is absolutely essential as a belief in narrative therapy. And there's some parts of healthcare where that works really well already—that's established. So if we think about cancer care, we don't call people “cancerous.” But yet we call people “aphasic.” So what happens to somebody's identity when they are called “aphasic”? It sounds like, to me that's kind of becoming quite a big part of who they are. And so it's about tending to the language we're using, when we're talking about an aspect of a person or an aspect of an illness that they have had, that then affects their communication with others, rather than making them the problem.
So I want to know: How can we make this routine in brain injury services and aphasia services? How can we talk about, “Oh, yeah, the aphasia—the aphasia happens between the two of you.” “The aphasia gets in the way when you two are trying to communicate.” “The aphasia makes it difficult for us to understand you and your needs, and what matters to you,” rather than, “Your aphasia” or “You as an aphasic.” You know, I know that language is moving on and, and I'm sure that that people are adjusting to making changes with this already. But I think it's really, really important that we think about how can we really relocate that problem from being something that is within the person to something that is cropping up between people.
Lyssa Rome
I think that's such a powerful idea. And after I heard you speak at ASHA, I started paying more attention to the way I was talking about aphasia, and where aphasia would get in the way, or how aphasia impacted, say, someone's ability to write a grocery list or to communicate with a child. There's something I think quite powerful about the ability to name it as separate from the person. It's different than I think, what I sometimes hear, which is people sort of blaming themselves for the communication breakdown or for the difficulty. So sometimes you'll hear people say, under their breath, like, “Oh, I’m so stupid,” or that sort of thing. And I think that when we say, “Ugh, aphasia is really getting in the way here, right?” That's, that's a little bit of a different message for people to hear, or maybe for people to tell themselves.
Kate Meredith
Yeah, it really thinks, to me, it speaks to me about who takes responsibility for that and who takes responsibility for the change. And if somebody is already experiencing this in every part of their lives, do we also make them responsible for owning it and, and managing it, and making amends for it. Yeah, that's a lot to put on someone.
Lyssa Rome
So what are some ideas for how SLPs might use these narrative techniques to give them, or people that they're working with, a sense of having influence over aphasia? What kind of questions can we ask people with aphasia and their significant others?
Kate Meredith
So this part of it, I find this really fun work. Okay, so what we're doing here is we're essentially giving aphasia a character. And we're doing that through making the person that we're talking with, the person who has the brain injury, the expert. Their expertise really gets raised here, because they're the one that understands it the best. So we're working with them to say, “Okay, let's understand more about this aphasia.” We could call it aphasia, or you might give it a different name. Now, the names can get a little bit profane.
Essentially, what would people call this thing that is coming along and disrupting their lives? What name do they want to give it? What does it look like to them? Do they have a vision of it? What does it sound like? Does it sound like noise and static? Does it have a color? Does it feel like it's this kind of black thing kind of approaching them? Is it big? Is it small? Does it have a shape? And what does it say? Does it say those things that you hear people saying, “Oh, I'm so stupid?” “Oh, I should have got that right.” “Oh, this is…?” Does it put words into people's minds? “You're stupid, you can't manage this situation. If I was you, I wouldn't even go out today, because you're not going to succeed at anything.”
There might be things that it’s saying to the people that we're working with that get into their narratives. So can we be curious, first of all? “Tell me more about this—what that looks like, what it sounds like, what it says to you, and how can I understand that better?” And we might be doing that most effectively in a session with one or two of their family members there as well. So they can really listen in and think, “Okay, I've got my experience of it. And this is their experience of it. And wow, I'm understanding this in a really different way now.”
So then we can start to think about the influence of the problem on people and on relationships. So what does it do? How does it get in the way? How does it disrupt? Does it provoke frustration? Does it provoke anger? Does it make you feel isolated? Lonely? Does it provoke other people to engage in behavior that you find really patronizing? So can we understand what does it do that really affects your life and your relationships?
Then we can start to think about its presence. So when is it most present in your relationships? What helps it to successfully disrupt your communication together with the people that you care about? So it might be, “First thing in the morning, when I'm really tired, it's everywhere. And I can't do anything without it tripping me up.” Or, “It's okay in this situation. But actually, in these situations, when someone's trying to rush me, and I've got a queue of people behind me, then it's just there, shouting in my ear, saying, ‘I told you, you couldn't be in this situation, you may as well go home.’” So really thinking about where are the contexts where it's most present, most visible, most disruptive?
Now, an interesting part of this process is finding out whether or not aphasia might also have some benefits to it. Because the problems we have in our lives often do have some useful side effects. Not always, but it's worth being curious about that. So if aphasia had any benefits to it, what would they be? And some examples of that might be “I can just not worry about my emails anymore. You know, emails were always really stressful to me. And now, you know, my partner's told everybody, look, don't email them, speak to them on the phone. And that's great, because actually, that used to be something that really used to stress me out.” So it's worth kind of just exploring, kind of with a bit of playfulness. Is there anything good about this? Does it do anything useful for you?
The important part or another important part of this process, is looking at what we call the relative influence. So by this stage, we've understood a lot more about what the problem does to people what the problem does to relationships. But actually, the relative influence is what influence we as people have on the life of the problem. So here, we're not just thinking—this is crucial—we're not just thinking about the person with the aphasia, but actually, everybody around them. How can everybody influence aphasia? So when is at least present? We've heard a bit about when it's most present, but when is it least present? When is it hardly even noticeable? And this is often to do with people having stepped up.
So what happens to aphasia when John writes down key words for Millie? Does aphasia get a bit smaller? Does it get a little bit less troublesome? What happens when Angela puts her phone down to look at her dad and talk to her dad? Does aphasia find that something that it doesn't like quite so much because it can't quite have its own way? What happens when David gives Phil time to finish rather than interjecting? So are these things that start to reduce the power that aphasia has to disrupt?
When we're doing this, we're looking for other people to think about their agency over aphasia. So it doesn't feel like a massively oppressive problem in all circumstances and in all contexts. But we're thinking about the unique outcomes that can be threaded together. So actually, most of the time, it's awful, but when that happened the other day that it didn't really feel like it was around, or it felt a lot smaller. Okay, so let's start to thread this together. And let's start to think about other stories that we can tell that are healthier. And through that, we identify the actions that people can take, the tools that they have to reduce the power of aphasia. But again, crucially, not just the person with aphasia, the person with aphasia and everyone else. So we can think about how power is produced when everyone learns aphasia’s ways, and uses their tools as a collective, as an army, as an uprising, to fight the power of aphasia.
Now, we have speech language therapists, speech language pathologists, have got so many tools, with working with families working with conversation partners, to really say, “These are your weapons against it. These are the things that you guys are already doing. But if you can do that more, if you can do that in that context, and that context, if you can do that here in the aphasia center, and at home and in the shop, then actually aphasia is going to start to think, ‘Okay, I don’t really have much of a place here. I'm not so welcome here.’” And it's going to get less powerful. And we can draw attention to that. We can thread it together. So it's not, “Okay, you know, John's aphasic. And he can't really communicate with anyone.” It's “Aphasia tries to get in the way of John and his family and John and his friends. But this is a really skilled group of people on guard for that. And they are equipped with so many skills and tools, working as a team to make sure that aphasia does not disrupt their relationships.” And that's enormously empowering for people.
Lyssa Rome
Yeah, it's a big shift. What you're describing makes me think about how people in relationship are dealing with aphasia, and how the reciprocity of communication, and that back and forth, might promote resilience with aphasia. And I'm wondering how we as SLPs can help people foster that resilience.
Kate Meredith
So resilience is such an interesting concept when we think about it in any walk of life. And there's so much different research into it. And I was looking into this a lot when I did my family therapy training, my dissertation was really around kind of partner coping when their partner has a communication disorder. So what helps people to cope and what helps people in relationships to feel resilient? And the reading I was doing at the time showed me that interpersonal relationships really influence resilience.
There was a paper by Roland, which was saying that actually, couples who can communicate openly, directly, and sensitively can better cope with chronic disorders. So what does this mean for groups of people that we work with in speech and language therapy and pathology, where open, direct, sensitive, reciprocal communication is less possible? And this is really where SLPs come in with their skill set. Because we need to understand, I believe, how people are managing. I think we need to start having those conversations—what's going on with renegotiation around the boundaries in this family around where the illness has its impact, about how they find a balance in their relationships that suddenly might be really skewed from where it was beforehand. In family therapy, we're really curious about people's understanding of each other's needs, of their strengths, and of their different perspectives on it.
So I guess when we're thinking about open and reciprocal communication, we can have ideas about supported communication. But we can also have a think about actually, what is it like to, to slow it down and to really be thinking, what are our different perspectives on this issue? How do we have a session that is supported by an SLP—somebody that's just taking it slowly and saying, “What is this like for both of you? How do you feel you're managing with this? What are your different ideas about this?” We can be there, supporting the person with the aphasia, to share their perspective, to share their worries. And it's the quality of that that can really, really lead to people feeling that we are open with each other.
It's not about the ease of the quick communication, necessarily, of: “What we're going to have for dinner tonight? And can you phone so-and-so?” It's about: “How we both feeling about this? How are we going to support each other? There's this idea about, you know, me helping you with personal care. What does that feel like for you? Does that feel okay for you? Would you rather someone else did it, so we protect our relationship in a different way? How can I understand your perspective? And how can you understand my perspective?” For me, that's the quality of that communication, that we can really have a part in making more sensitive, making more open, which I think can directly feed into people's resilience.
There are other ways that we can think about resilience, which is about the protective factors that they have as part of them or in their environment or in their relationship. And we can do a little bit of work around that—”What is it that that you do to help you manage at this time?” So then might be emotion-oriented coping mechanisms. Some of those can be healthy, some of those can be unhealthy. So we might be thinking about faith, we might be thinking about denial. There's problem-oriented coping mechanisms, where people might think about giving up work to help manage the kind of care package of their partner. But obviously, that can have its implications with social isolation and financial resources. There's problem-solving coping mechanisms where people might seek social support, or take on different roles that were previously held by the person with a brain injury.
But we need to, I think, be curious about this. What are you doing that's helping you through this time? What ideas do you have about the future and how you guys are going to manage? Because we know that sometimes people can do things with the best intentions. So partners have been found in the past to isolate themselves from social networks to avoid placing their partner into difficult or embarrassing situations. And we might be curious about that and thinking: Okay, yeah, we can see what the intentions are there. And that sounds like you're really holding them in mind. What will that do to you and your resilience, if actually, your social network kind of closes down?
So there aren't necessarily the right answers. And that's another kind of value, I guess, in family and systemic psychotherapy. We're not necessarily there to give the answers. We're there to ask the questions. We're there to be curious. Because generally, our belief is that people come up with their best solutions that fit them, that fit their context. But what we might do is ask the questions that help them to feel: Here's somebody interested in this, here's somebody that can help me to work this through with my partner, by being there, supporting the communication. And that can be a really valuable extension of our role that people might find more meaningful than maybe other things that we do.
Lyssa Rome
So it sounds like you're describing resilience as also something that's sort of based in and fostered by relationships. One of the ideas that really stood out to me in the presentation you did at ASHA was about how speech therapists could use diagrams and maps of relationships and systems to help them understand the context that aphasia exists in, right, the people who are dealing with aphasia, and so I'm wondering if you could tell us a little bit more about using diagramming within our practice?
Kate Meredith
Absolutely, I think this is one of those quick wins that SLPs can kind of start to implement kind of really, really quickly if they're so inclined. So genograms and ecomaps are two tools that I started using really, really quickly when I was training as a family therapist, but still working as a speech and language therapist. And they're slightly different. But essentially what they do is kind of map out the context for communication, map out the context for relationships.
So genograms we tend to think of—they’re better known as family trees. So you might have seen these in other books and other contexts. But essentially, we use normally circles for women and squares for men and different shapes for people that don't identify as either. And we kind of map it out according to at least three generations. So you have symbols for each member of the family, and lines to connect them in their different family groups and generations. And what we do there is we map out the structure of the family. So we understand who's in the family and, and where do they live and how often do you see them. But also we can start to think about the quality of relationships. So in systemic psychotherapy, we draw lines between relationships. So you might have two or three lines between the people that are really, really close. And then you might have some squiggly lines between the relationships where there's conflict.
So it helps us to understand, okay, where are where are the people that we're working with in the context of their family relationships? Which relationships are going well? We can also put significant dates on there, separations, illness is really useful to put on there—physical illness, mental illness. How well is this family doing at the moment? What is this new injury, or this kind of developing illness mean to this family? And if we're thinking about their conversation partner as being kind of their key support, potentially their partner, actually what else is going on in their family, because most of us have got something going on in our family. I think I fell into the trap very often as a speech language therapist, thinking: Oh, I bet this wife will be delighted when I say, “By the way, I can stay late tonight, if you want to come in, and we'll do a conversation session with you and your husband.” Without thinking: I wonder what else this woman has on in her life and how this will fit for her?
So it helps us to understand a little bit more about what's going on for that family at this point in time and how this fits. It also helps us to understand if we ask questions, things about the family scripts, the things that get handed down the generations. “We are a family who grin and bear it and get on with life and don't grumble.” Or, “We're a family where bad things always happen to us. And this was always going to happen.” What are the stories that we tell about ourselves as a family? This can be really informative for us as therapists to be thinking: Is this to them feeling like another example of that? Or actually, are they ready to challenge that family script? Or do they have a really positive family script? “We're survivors, we find ways to make stuff work.” “No matter what happens, we're going to stick together.” It's really interesting to ask people about the stories that get told about their family and, and what gets handed down in a really positive way. And what gets handed down in a way that doesn't feel okay, and maybe it's time to think about doing something differently.
So those genograms kind of map out the significant relationships within the family, which can be really helpful for us as speech language therapists to think about. Okay, who are the key communication partners here, and what is the meaning of the illness or the meaning of the aphasia for this family? So that's kind of one way of doing it.
There's another way of doing it, which sometimes, I'd almost recommend starting with, because maybe it fits better for a lot of people in the way they live their lives these days, where it's less centered on the family and the different generations, and more about our social networks. And I'm not necessarily talking about online social networks here, I'm talking about wider social networks. So the tool that I'm thinking about here are called ecomaps. And what we do with ecomaps is we draw a bit of a map of the family and their social systems and their professional systems. And we do that by drawing a circle in the middle with the person we're working with, and their immediate family, or household in that circle. And then around them, we draw more circles. And that can be as many as is relevant—a circle for each system that they are engaged with. So it might be the two partners, if it's two partners, each their work context. If there's kids, it might be their school. There might be adult friends. There might be kids’ friends. There might be sports teams, book clubs, neighbors, other family groups. We can start to think, okay, all of these people interact with this family on a weekly basis or monthly basis.
And we can put ourselves on there. Now coming into this, there's a rehab team, or a speech language pathologist or a psychologist or social worker. We can start to kind of put ourselves on there as well. And we can have bigger and smaller circles related to kind of how present those systems are in the family's life. I think what can be really interesting is looking at how much space we take up in somebody's life sometimes, particularly in the acute stages or early on in rehab. Actually, work might have shrunk down to a tiny, tiny circle, whereas it used to be something that somebody did 40 hours a week. And actually now we take up 40 hours a week if they're on an inpatient ward, or even more. Things get really skewed. We become really big in people's lives and that might be quite complicated for people.
But what we can do is start use the lines that I talked about earlier in genograms—the straight lines for closeness the squiggly lines for conflict, again, between that that group in the middle and the different systems around them. What's going well here? What is really shrinking down but we don't want it to? We want that to be bigger, that meant something to us, and at the moment, it doesn't have any space because all these other systems are involved. Where is it that actually, we can say, “Okay, right now, yes, having all the support from the speech language pathologist is really great. We want that. But what would it look like in a year's time?”
Doing these over time can be really important. If you had three of them, you might do an ecomap the year before the brain injury. What did family life look like? Who were the connections? Who were the networks? Right now what does it look like? And if we were to think in two years’, or three years’ or five years’ time, what would you like it to look like? Because that helps us to think about: Which are the systems that we really need to support this family to communicate with? And what would that communication goal be? What would be meaningful for that person? So if it's, “I really love my book club, they're a brilliant group of people, I want to stay engaged with them.” Okay. What does that mean for our communication goals together? How can we really make that important and prominent?
So we can really set goals that are based very much on what will help this person to keep their network—that again, like you said before, feeding into those ideas of relational resilience. And meaning that actually, that social isolation, the people can really experience with aphasia, with people adjusting to aphasia and caregiving, we can say, actually, there are ways to keep these networks going if we think really carefully and really intentionally around what communication goals are needed for us to work on, but also how can we explain to these different systems about aphasia and its sneaky ways? And how can we help them to feel just as skilled in outwitting it and outsmarting it, as the family are hopefully beginning to feel?
Lyssa Rome
So as we begin to wrap up, I'm wondering what what would you like speech language pathologists who are listening to this to take away from what you've been sharing with us?
Kate Meredith
I imagine that many speech language therapists listening to this will already have a load of these ideas. So I hope that they feel empowered to keep thinking this way, keep using these ideas. I, for my own practice, like to think: Okay, what would matter the most to me? If I was to have a stroke, if I was to have aphasia, what would matter the most to me? And I think that can be a helpful way to think.
So my thinking is that actually, communication builds relationships, communication sustains relationships, and my relationships are the most important things to me in the world. But what if no one that I was working with in our health system was talking about the significance of aphasia in my relationships? I'd feel stuck. I'd feel like I didn't have anywhere to express that. So I would love speech language therapists would be thinking, I'm gonna ask, “How's this affecting your relationship? How are you doing with that? Who should we be bringing in? How can we understand that?”
So curiosity underpins everything that family and systemic psychotherapists do. So be curious and be broad with your curiosity. Don't feel like there are limits that you've got to stick to. Feel free to ask, “So what's this doing to your relationship with your partner? How's that working for you? What are you worried about?” Because actually, when we can help people to say it, it feels more manageable. So I'd love people to think about that.
I'd really encourage people to think about the concept of timeframes. So what were things like before? How are things now? Where are we going to? What to what place do they want to get to? Because actually, if we don't ask what things were like beforehand, we might never know that actually, they were just about to divorce. And then this happened, and now they feel stuck together. So, you know, ask, “How was your relationship before the stroke?” A lot of people will be doing this already. I don't want to patronize anyone. But I do want people to feel permitted—not that I'm here to give permission—but encouragement to ask these questions. So can we find out who the key conversation partners are, because that really makes us think about the key communication goals more broadly than our immediate context that we see them in.
I'd also really like to think about change happening in relationships rather than change happening within the individual. So a great shooter I had recently said, you know, when people are traumatized, don't make them responsible, alone, for change. This is Robert Van Hennik. And I love this idea: Is it fair for us, in healthcare, in society, to say, “You, there, with aphasia, you need to change your communication so other people find it easier to to understand you.” How can we help families and societies and communities to understand the relational responsibility for aphasia and for managing aphasia?
I also would really like people to have a think about the problem. So the way we talk about the problem gives the problem meaning. So what are the stories that we hear and we tell? And how can we help people with aphasia and their families and their networks to challenge the dominant stories that actually might not fit for them. Actually, there's a really lovely possibility there for joint working. There’s short training courses. And there's already a lot of kind of writing out there in systemic theory and practice and more writing coming through about the links with aphasia.
Finally, I guess what I would say is a speech language pathologists, people listening to this, they're already uniquely skilled. And I don't think people understand how good they are at noticing and supporting communication. And that's what builds relationships. We're so proactive in reducing communication barriers, and we've got the opportunity, through our work with people, to really, really find out what matters to people, and help people, help relatives learn new ways of communicating. So don't underestimate everything that you have to offer, in expanding that to relationships, and the quality of relationships to do work that is more and more meaningful for the people that we work with.
Lyssa Rome
Kate Meredith, thank you so much for talking with us. These ideas, I think are both very practical, and then also very empowering to think that as SLPs we can really think broadly and with curiosity about how we are supporting people and families as they deal with aphasia. So, thank you so much for talking with us today.
Kate Meredith
It's been a real pleasure. I'm delighted to have been able to have this conversation with you.
Lyssa Rome
And thanks also to our listeners. For the references and resources that were mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out more about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I’m Lyssa Rome.
References and Resources
www.merediththerapies.com
Headway https://www.headway.org.uk
Stroke Association https://www.stroke.org.uk
Aphasia Access Conversations Episode #97: Aphasia Is A Family Thing with Marie-Christine Hallé
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Welcome to the Aphasia Access Aphasia Conversations Podcast. I’m Katie Strong and I’m a member of the Aphasia Access Podcast Working Group. I'm also a faculty member at Central Michigan University where I lead the Strong Story Lab. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Sabine Corsten. We’ll be talking about her work which focuses on supporting people with aphasia in reconstructing their narrative identity.
Before we get into the conversation, let me first tell you a bit about our guest.
Dr. Corsten, Professor of Therapy and Rehabilitation Sciences (Speech Therapy), employed at the Catholic University of Applied Sciences, Mainz, Germany, has focused her research on participatory and quality of life-oriented interventions for aphasia and in old age. Her research explores how identity changes after having aphasia. She has led the development of the biographical narrative approach 'narraktiv' in Germany. She is currently involved in the development of digital solutions to support peer biography work and social networking in aphasia and in old age. The app, BaSeTaLK, to support biography work in senior citizen facilities to improve quality of life and communication was awarded the Digital Health Award by Novartis. She has presented her work at international conferences and has published internationally. Dr. Corsten has been a visiting researcher at the Centre of Research Excellence in Aphasia Recovery and Rehabilitation at La Trobe University in Melbourne and at the University of Queensland in Brisbane.
In this episode you will:
Learn about how identity and narrative are connected to quality of life. Hear about the development of the Biographic Narrative Approach. Learn about how an app, BaSeTaLK, was used for older adults in nursing home populations to improve their quality of life. Hear about how parking lot conversation in Philadelphia led to an international working group on narrative identity and that that group’s vision is to train students and clinicians in gaining competence in narrative identity work.
Katie Strong: Welcome. I can’t tell you how excited I am to have this conversation with you today.Sabine Corsten: Yes, thank you for the invitation. I feel really honored to be invited. So yeah, I'm really excited too and I'm looking forward to our discussion today.
Katie Strong: Fantastic. As we get started, could you tell our listeners exactly what is meant by ‘narrative identity’? And why this is so important for our work with people who have chronic communication disabilities such as aphasia?
Sabine Corsten: Thank you for this first question because I really think it's important to have a clear concept of identity and narrative identity to understand the biographic narrative approach and similar approaches like your approach about storytelling. And also, I think narrative identity is kind of a key objective in improving quality of life, so it's really necessary to understand it. When we started our work, we looked at sociocultural theories and we found that identity is constantly transformed through, for example, social interaction with other people. So, this means identity is renegotiated in dialogue with others. Therefore, you need narrative competencies, which means the competencies to talk about oneself and intersubjective exchange. So, I think these social interactions are necessary to interpret and integrate important life events in your life story.
Important life events can be very positive things like a wedding, but also negative things like having a serious illness. And so, these processes to interpret and integrate these life events are crucial for optimal identity development and for psychological well-being. This means these kinds of life stories or life narratives facilitate the process of understanding what happens to you and your life, and they help you to make sense of these crucial or critical life events like a stroke, for example. By this, the sense of identity can be restored, or you can find a renewed meaning to life. And now, you can have this bridge to quality of life, because quality of life seems to depend on meaningfulness and optimal identity development gives this meaningfulness to your life. So, this is very closely connected.
Maybe to sum it up, identity development or identity work can be seen as an ongoing process that forms a connection between the past, the present, and the future, and also between different roles you have in life as somebody in a professional role or in a family role. It also connects different life areas. And this narrative character of identity means the medium to do this narration is telling about yourself so that you can connect these different times in your life and areas. And also, I think this is really important, it gives you a feeling of coherence so that you recognize yourself as the same person over time, despite changes in your life and your roles. So, you have the impression of continuity and the feeling of agency that you are able to make decisions and to act.
That was a long explanation about identity. Now looking at aphasia as a chronic communication disability and as a really critical life event, especially asked for this identity work. However, the really necessary competencies, the narrative competencies are limited. So, the intensity and the length of the conversations are limited. And you can say, yeah, aphasia is a biographical disruption, so it disrupts everyday life routines, disrupts aims and perspectives. But it also disrupts the possibility to cope. So, because of the language difficulties, and I mean, you know her better, but I think it's so impressive how Barbara Shadden equated aphasia to ‘identity theft’, because people can't use language for these necessary coping processes. And so, people with aphasia often describe themselves as more deficit oriented. You can see, for example, about 60% of people with aphasia suffer from signs of depression one year after having a stroke. We also know that improvement in language skills does not mean there is the same improvement in quality of life. This was the starting point for our work.
Katie Strong: Thanks Sabine. Yeah, so it really is important. The stories that we tell others and the stories that we tell ourselves about ourselves have a significant impact on our quality of life. Well, I'm just so curious if you could share about how you became interested in this work?
Sabine Corsten: That's a very good question. I mean, you know a bit about it, and it was really an exciting journey because of when I started working with people with aphasia. When I started my professional career, my work was really about classical language-based therapy, so it was symptom-oriented, and we were looking at functional themes. For example, my Ph.D. was about phonological therapy and aphasia. And that was really changed when I started working in Mainz as a professor. So, we had this discussion at home about how language is connected with thinking. So, the connection between language and thinking and people with language difficulties. How can they work on their self-image because this essential to language is missing or limited?
From a sociological point of view, the question came up, “what does this mean for the experience of oneself?” And to be honest, I had no answer. And I was expected to be the expert, so I thought, “I have to look this up,” because this is a really new path. And thinking, “what does it really mean to have this language difficulties apart from word finding difficulties and symptoms I knew about?”
I was not sure if there was something in the literature, but then I found the articles from Barbara Shadden and I had to look up this work. But I know now that this was the initial spark for me, because then I really thought, okay, there's already somebody who wants to understand what it means for people with aphasia to work on their identity and what it means for their further life and coping processes. And, so yeah, this was the starting point. And my work was always about conceptualizing intervention, so I thought, “okay, I want to understand how identity processes can take place when you have suffered from aphasia.” But I also want to support the process because it seems that there is a deficit. So, I already had in my mind that I wanted to think about a kind of therapy method or approach.
Katie Strong: I think that's where our commonalities lie. You know, I've been a fan of your work since I was a doctoral student working on my dissertation, which was also in narrative methods to support people with aphasia. I would love for our listeners to hear a little bit about the behind the scenes of how you developed the biographic narrative approach and the philosophy behind it.
Sabine Corsten: When I found the work of Barbara Shadden, I thought, “okay, there is a starting point for our work.” So, this was when I learned more about the idea of narrative identity and about the idea of, “okay, we want to support people with aphasia to work on their narrative identity.” And in the beginning, it seemed a bit crazy because we wanted to use the thing that is really difficult for them, language to support identity-building processes. So, maybe it's important to mention that during that time, I also met Linda Worrall and Miranda Rose for the first time. They also supported us and said “no, go on. This seems to be a really good starting point,” and, “maybe a bit more about the philosophy is.”
The philosophy of biographic narrative work is not really that we found something totally new. What we wanted to do is to support this kind of exchange with other people and to support live storytelling, and people with aphasia despite the language difficulties. I think this is one very important thing. And other characteristics of the philosophy that we thought, “okay, it's not about language improvement, it's more about giving them the tools to tell their story.” So, using multimodal support as written language, or using photos of pictograms. So, all the stuff we already know from traditional speech and language therapy, but really using it to have a deep conversation about their life stories.
As a third point, people with aphasia can use their life story as a kind of resource pool so that they could discover, for example, strategies that they used in their former life to overcome challenges. And so that they start thinking, “okay, we can use these strategies again,” and really people told us about that. For example, they realized, “I was always very good at math, so I can do my financial stuff again on my own, I don't need help from my carers.” Another really important point about the narrative approach is that it's really not directive, it's non-directive. So, it's not about, “oh, you’re telling me you like to meet other people, then it’s a good idea to use or to visit a support group.” No, it's really about finding the solution by themselves. We just listen and try to understand what people tell us, but it's not about giving them a direction.
Another very important point is that it has, in my opinion, a preventive character. So, it's not a kind of psychotherapy and it's not about working on depression. It's really about preventing depression or working with people with mild symptoms. I think these are really very important characteristics of the approach, and you asked about how we developed it. So, we work in an interdisciplinary team consisting of, of course, speech and language pathologists, but we also had an adult educator on our team to learn more about the theory behind narrative identity. And we also got advice from psychologists and sociologists, really to learn more about these other disciplines. So, this, I think, is what is behind the approach. Maybe, should I also tell you a bit about how it works?
Katie Strong: Please. Yes, please do!
Sabine Corsten: And I forgot, apart from the professional workers who were part of the team, we also asked people with aphasia, for example, about the language we use in the approach. So, to learn more about easy language, or, for example, to select topics that were really important for them and what they want to talk about.
The approach itself consists of individual and group sessions, five individual and seven group sessions, in the evaluated version, and the sessions took place over ten weeks in our study. For the individual sessions, we mainly based them on a kind of unstructured interview format, it’s called the ‘narraktiv’ interview or the narrative interview. So, this should really give people with aphasia the chance to tell about their life story. For example, we started these sessions by asking them, “tell us about your life, you can tell anything you want. We won't interrupt you, and you can just talk about what you really think is important to you.” So, they were not forced, for example, to tell their stroke story. And there were also people who started with very different things, for example, with the death of their mother or things like that.
The first three sessions were about this unstructured interview form, and then we had two more individual sessions which were a bit more guided about relevant biographic narrative, relevant topics, for example, family, or health, their professional career perspectives for the future, things like that. And we also used these last two individual sessions a bit to prepare the people with aphasia for the group sessions.
And during the seven group sessions, we had a speech and language therapist and educator who kind of moderated the conversations. So, they really worked as a kind of communication broker by just supporting the conversation, introducing people to the topic, and asking questions so that everybody was able to take part in the conversation. And we also decided to include people with really severe deficits in speech production, so people with severe apraxia of speech. And again, we offered them to use pictograms and written language. We also had some worksheets, for example, we had something like a card and people could write down, “so, this is me” in the middle, and then they could put people around themselves. So, “these (people) are my family. These (people) are my best friends,” to show how close they are to the individual persons. And after ten weeks, we stopped the intervention, and we had a conversation after three months to listen to the people and to hear how they felt after taking part in the intervention.
Katie Strong: Thank you. So, I do have a question. I guess in the group sessions, were they sharing things that they had prepared in their individual sessions? Is that what was happening?
Sabine Corsten: Yeah, exactly. For example, they had talking about their families as a topic in the individual sessions. And then they brought, for example, pictures from their family to the group session and introduced the members of their family to the other group members. Yeah, they shared the information that they discussed in the individual sessions.
Katie Strong: Fantastic, thanks for clarifying that. Since that initial project, you've been taking this storytelling approach in directions with different stakeholders, and also incorporating technology, specifically with nursing home residents and an app called BaSeTaLK. Could you tell us a little bit more about all of this?
Sabine Corsten: Yeah, I mean, really, the core of all of this is the biographic narrative approach. And we really started using this and other settings and with other target groups. And BaSeTaLK, again, an acronym, it's about using it with another target group. So, we decided to work with really old people, residents living at nursing homes, and the idea was to strengthen resources in the late stage of life. And I think you can compare getting old and especially moving into an institution to having a stroke because it's also a very critical life event.
You can see that people living in nursing homes really experience a kind of loss of connections and meaningful relationships, which means they also have high rates of depression. I think it's really up to twice as high as people living at home, so they are really in danger of getting a really serious psychological illness. And also, the rates for dying are higher there, so we thought it's another situation where people need support in communication to have the chance to talk about themselves. And again, it’s our task to find this kind of preventive solution. It's also not new in working with older people, for example, there is already biographic work or reminiscent work. It's kind of quality characteristic of modern nursing and care for elderly people. But we found that it is mostly used for people with dementia, so then the aim is to facilitate the memory, really, it's not about identity work. So, it’s really mostly offered for people with dementia.
And another point is, at least in Germany, this kind of reminiscent work is not systematically used in nursing homes because we have this shortage of staff, and this really limits the use. So, we thought that it might be a solution to work with volunteers and older people because we know from the literature that if volunteers and residents are similar, for example, in age, then it's easier for them to collaborate. And so, we thought that we would work with volunteers, and they could go into the nursing homes and have these life storytelling conversations with the residents. And we found in the literature that, for example, in palliative care, this kind of biography work is already done successfully by volunteers.
But it's also recommended to use technical devices, for example, specific apps to support the volunteers. And this was the moment when we thought, “okay, let's do this and try to develop an app like BaSeTaLK so that volunteers can use it as a kind of moderation guide and to stimulate these narrations in nursing homes.” The app, BaSeTaLK itself, is kind of about virtual journeys. Let’s say it like that. So, it offers the opportunity to go on virtual life journeys and you can visit different virtual places. For example, people can choose to talk during one session about a river or theater. So, it's not just a river or mountains or things like that, you can also go to casual places. And we had a long discussion about if we wanted to conceptualize the app around these locations, because in the beginning I thought that it was much better to have these biography important topics like family, health, and all the things I already knew. But we developed the app together in an interactive process with residents and possible volunteers. They told us that many old people don't want to talk about their family, for example, their partners may be dead or their relationship with their children might not be so good. They might also be a bit more open, so people can talk about their family, but they don’t have to. And so, we decided, “okay, let's have these places,” for example, we have a place with a garden that has stimulating questions like, “what did you observe growing during your life?” And then people can decide if they want to stay with the plants and talk about plants, or if they think, “oh, I saw my family growing, and I want to talk about my grandchildren,” they can talk about that. So, the questions are quite metaphorical. You can stay close to the question, or you can give a broader answer. So, this was the idea when we chose to work with these locations. And then the app has a kind of stimulating feature by always asking these kinds of questions, but also having pictures of plants when you look at the garden or of nice places in the scenery. So, people can talk about what they associate with the picture and they can answer the questions. There's also always a kind of specific feature at each location. For example, when you visit the sea, there's the sound of the sea, or you can listen to a podcast or you can listen to music, things like that. The app can be used in one-on-one sessions to stimulate conversations about the life story, but it can also be used in group sessions to facilitate group conversation. I'm not sure, I think this gives the first impression of how the app might work.
Katie Strong: Absolutely. No, I think you've given us a great visual of how it can work. I guess one question that I know that's going to come up, Sabine, is “Can anyone access the app?” Or “How do we how do we get access to it?’
Sabine Corsten: Yeah, this question really comes up each time we talk about the app, and I think it’s a very good question. And, yeah, I would really like to say yes, everybody can use it, because we really had very positive feedback from the users. So, we evaluated in a bigger study including fourteen residents in the target group, I think, and we also had a control group with more than ten people. And the data really showed that there was an improvement in quality of life and quantitative data. But I think it was more impressive that people told us, “yeah, we really started thinking about our lives.” For example, one older woman taking part in the intervention, I think she was 94 years old, she said, “so this intervention was a turning point in my life. So now I look at my past and much more positive way.” And I mean, she was a really old woman, and she took part in twelve sessions.
In total, we have 15 locations in the app, but we only work for three months with our residents. I think this tells so much about what happens when you take part in such biographic narrative interventions. And I mean, we really work with people with maximum mild cognitive deficits, so it was really for older people with almost no cognitive deficits.
Now to your question, after this long answer, we published the app as open-source code, but I had to learn that it doesn't mean that it's an app shop or that you can immediately use it. It means everybody can work with this code, so other coders, IT people, tech people can start changing the code or working with the code, but companies can also do that. We don't have the funding to really go on with the app or to operate it on a regular basis. So, we are looking for bigger institutions, for example, institutions working with a lot of nursing homes in Germany so that they can operate the app. We are also discussing going on with the app with the colleagues from La Trobe with Miranda Rose. So, we already translated all the language stuff from the app so that it can be used, for example, in Australia. And there's the idea that it can also be used when you work with people with aphasia because it really has easy language with hardly any barriers. It's easy to use and the interface is very simple. So, at the moment, we think it might also be a good idea to train people with aphasia to use it as a kind of peer leader in support groups, for example. So, we try to find that kind of money to go on with the app and we also try to transfer to other targets.
Katie Strong: Important work and we certainly hope that the funding comes your way. I love that it can be applied to a variety of populations. You've talked a little bit about the coding but tell us more about what it was like to develop the BaSeTaLK app, and who was part of your team. All of that good stuff.
Sabine Corsten: It was a really new experience for me because it was my first tech project. And we started this tech journey before the pandemic so we didn't know that would become so important for people in the nursing homes. And, as I already mentioned, we started the development or process in a so-called user-centered process. So, this means all the possible users were involved in the whole process, to really old people living in nursing homes, to older people who might work as volunteers. So really from the starting point, we started working with them in focus group meetings. And these focus groups were led by two of our research workers, two speech and language pathologists, and also our tech guy who programmed the app was part of the focus groups. And they met on a regular basis. So, in the beginning, we started looking at recommendations in the literature and requirements. And then we presented this to our focus group members, and they commented on it, or they were also able to use some prototypes we developed. And so, this we presented it to them, and they would give new recommendations to us, or they talked about their requirements.
Katie Strong: I think it's so thoughtful and so important that we bring in stakeholders so early in a product development like this, you know.
Sabine Corsten: Yeah, we really learned about, for example, the selection of the topics. So, they told us not to offer topics like family or health, because this is so difficult for so many old people. So, start with other topics, maybe easier topics, and then you can create variety in the depths of the conversations by using different kinds of questions. So, this really came from the groups, it was not in our minds. I think this was really important to learn a bit more about that and also about the interface. I mean, now I say, “yeah, we work with a simple interface,” but this means really simple. So, because of all the things that we already know about the menu, and all these things are very difficult for people. I mean, we are talking about people 80 years and older. And I think you really have to ask them because otherwise, they can't use the product. What might be interesting is that we had to do this all during the pandemic, so it was difficult for the groups to meet. For example, we ended up clarifying some things, or some topics, by phone calls. So, it was not possible to meet all the people in the group together. This was one of the challenges.
I think it's really interesting, we have a Ph.D. project using interviews with the members of the focus groups after being part of this focus group work and phone calls and all of this stuff. And I think this is interesting because we are all still able to show that this participatory work or process was really a very good experience for the members of the group. So, we found some indications for personal growth and personal empowerment. So, they were talking about how they have found or developed some new competencies. And I think this was also interesting that even the people who were just part of the focus group meetings benefited.
Katie Strong: Yeah, right. It's all about meaningful work, right? Having purpose and doing meaningful things. I love that. Well, I'd like to shift gears a bit and share with our listeners about how we met at the International Aphasia Rehabilitation Conference (IARC) in Philadelphia, in the Hilton parking lot of all places to meet. And we ended up having this beautiful parking lot conversation with you, me, Sarah Northcott, Rhianne Brinkman, and Bianca Spelter. It was kind of the start of this international working group that we have for narrative identity. You've been the leader for this group, and I was just curious if you could share a bit about what we've been up to and a few of the goals of our working group.
Sabine Corsten: I mean, I already told you that I'm really not sure if I am the leader, but I really like being a part of the group or a member of the group. And, yeah, I really wanted to get to know you and also about Barbara Shadden to be honest, because I admired this work. And so, when I came to Philadelphia and saw you on the presenters list, I thought, “okay, I want to get to know her, and I want to get to know, of course, Barbara.” And then, I think it was really nice to get to know all of the other people you mentioned already. And I think it's so great that we have this group, and that we meet on a regular basis, since last summer. So, for me, I think it's really a very specific opportunity to learn more about the storytelling approach, about the theoretical background, and also to meet people who really believe in the same thing. This inspires a lot in me, I think, so that I think, “yeah, we are on the right way because we are together.” So I think, but you can correct me, one of the goals of our group is to have an exchange about our work and about the things that are important to us, looking at our professional work.
Another thing, and I think this is something I like very much, is to develop joint projects to have or to come to results, for example. And I think one really interesting path is to think of how to support storytelling, for example, in the acute or post-acute phase of aphasia. And I think we talked about this in the beginning and then we thought about other projects. And I mean, at the moment, I don't know what you think, but I think it's great that it has already started. So, we are already working on a joint project, and this was about introducing students and speech and language pathologist clinicians to the narrative approach, and especially to the approach you use, the life storytelling approach. And maybe combined a bit with the ‘narraktiv’ approach, to work on the training together, to train and inspire other clinicians, and to facilitate them using the approach. And I mean, in the Netherlands, Rhianne Brinkman already started with a few students to do this course. And, yeah, I'm really curious about what she will find. And I think it's about giving the students or the clinicians more information about the theoretical background, but also giving them the opportunity to make their own experiences and to try the approach with people with aphasia.
Katie Strong: Absolutely, it's just been great to connect with all of our newfound colleagues. And I agree with the sharing of ideas and seeing what we can do to maybe move this work forward to be able to have a farther reach. You just talked a little bit about the student training. But I do think one of the things our group has been talking about is, you know, how can we begin to train clinicians in understanding the constructs related to narrative and identity and methods to use with our clients and exploring their own stories to help them move forward? I was wondering if you could tell a little bit about what the working group has been discussing and maybe has in the works.
Sabine Corsten: I already mentioned it a bit. So, it is about how to add to, what training could look like, or what we really want to share with clinicians and students. And to me, I don't know what you think, but there are two parts to it. There's this part about giving the theoretical background and really facilitating people in understanding why it is important to look at identity and how identity is connected to communication. And, again, this is connected to quality of life and to our work. So, because I think the aim of rehabilitation is a growth in participation and quality of life, and the training part is also closely connected to this. So, giving them the tools to do this, to feel comfortable so that they know how to ask questions, or how to react when people start crying, for example. I mean, it's normal to be upset when you talk about, for example, your stroke story. So, if you are sad that you've lost specific skills, this is very normal. I think this is the part, knowing about the background and knowing about the tools or methods you can use. And the second part is about the mindset to really see that this is our work, and we are responsible for it because we know how to facilitate communication and how to open the space for this kind of conversation. And I think this should also be part of this experience that we want to share with clinicians and students. That they can see this as really their responsibility, but also as a big chance for us to have a new kind of working area, in addition, of course, to the classical field and to the language-based therapy.
Katie Strong: Yeah, I agree. I agree. It's beautiful work, but it does take a different mindset to do. Well, Sabine, we're coming to the conclusion of our conversation, and I was just curious if you had any final thoughts you'd like to share with our listeners as we wrap this up?
Sabine Corsten: Whoa, that's a really difficult one, because I think we talked about a lot of important topics, or thoughts during the last hour almost. I think, maybe the take-home message is to first be aware of the psychosocial consequences of aphasia. I mean, I think a lot of people know about it, but really to be aware of all the changes these people suffer from. It's not only about language, it's about all the other life areas we mentioned. And maybe another take-home message I already mentioned is to feel that we as speech and language pathologists can be part of the solution. So that it's really our part to offer approaches and to conceptualize approaches that might help here. Because, when I look, for example, at the Stepped Care program, this is not established in Germany. But for example, in Australia, this means that really everybody suffering from aphasia can be part of a psychosocial approach. And then, depending on the severity of the psychological difficulties, you can decide if you only maybe have a kind of biographic intervention, or if you need problem solving therapies, or if you really need psychotherapy. I think this would be a good thing to start with, as maybe level one interventions like the storytelling approach, or like the biographic narrative approach, that we start establishing these kinds of approaches for people with aphasia. And that speech and language pathologists feel comfortable doing it, but they also have the opportunity to maybe collaborate with psychologists and can say, “okay, and now we have another level or another severity of psychological problems.” And now we need to collaborate, or the psychologist needs to take over. I think that if we can go on that journey, this would be great to find more solutions in collaboration with other disciplines.
Katie Strong: Yes, I agree. I agree that we, you know, have a role in supporting people beyond just their language impairment and that using story is one way to do that. Absolutely. Well, Sabine, I appreciate the conversation today. Thank you so much for being a part of this. And in the show notes, listeners, we'll have some ways for you to contact Sabine and also some links to references to some of the things that we've discussed today. So, thanks so much for being here.
Sabine Corsten: Thank you again for the invitation. It was really an honor for me, and I think the time flew by now. So, it really felt very fast.
Katie Strong: Well, thanks so much.
On behalf of Aphasia Access, we thank you for listening to this episode of Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to check out our growing library of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.
Contact for Sabine Corsten – email [email protected]
Acknowledgements – A special thank you to Amanda Zalucki from the Strong Story Lab at Central Michigan University for their assistance in the transcription of this episode.
Resources
Corsten S., Konradi, J., Schimpf, E. J., Hardering, F., & Keilmann, A. (2014). Improving quality of life in aphasia: Evidence for the effectiveness of the biographic-narrative approach. Aphasiology, 28(4), 440-452.
Corsten, S., & Lauer, N. (2020). Biography work in in long-term residential aged care with tablet support to improve the quality of life and communication – study protocol for app development and evaluation. International Journal of Health Professionals, 7(1), 13-23. https://doi.org/ten.2478/ijhp-2020-0002
Corsten, S., Schimpf, E. J., Konradi, J., Keilmann, A., & Hardering, F. (2015). The participants’ perspective: How biographic-narrative intervention influences identity negotiation and quality of life in aphasia. International Journal of Language and Communication Disorders, 50(6), 788-800. https://doi.org/ten.1111/1460-6984.12173
Lucius-Hoene, G., Holmberg, C., & Meyer, T. (2018). Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford, UK: Oxford University Press.
Menn, L., Corsten, S., Laurer, N., & Wallace, S. J. (2020). The Effectiveness of Biographical Approaches in LongTerm Care: A Systematic Review. The Gerontologist, 60(4), e309-e238. https://doi.org/ten.ten93/geront/gnz074
Shadden, B. B. (2005). Aphasia as identify theft: Theory and practice. Aphasiology, 19(3-5), 211-223. https://doi.org/ten.ten80/02687930444000697
Strong, K. A., Lagerwey, M. D., & Shadden, B. B. (2018). More than a story: My life came back to life. American Journal of Speech-Language Pathology, 27, 464-476. https://doi.org/ten.ten44/2017_AJSLP-16-0167
Strong, K. A., & Shadden, B. B. (2020). The power of story in identity renegotiation: Clinical approaches to supporting persons living with aphasia. Perspectives of the ASHA Special Interest Groups, 5, 371-383. https://doi.org/ten.ten44/2019_PERSP-19-00145
Video Resources
Aphasia CRE Talk - Improving the Quality of Life in Aphasia, The biographical narrative approach. - Prof Sabine Corsten https://www.youtube.com/watch?v=NGIFZkysDYA
If you liked this episode – more listening…
Additional Aphasia Access Conversations Podcast episodes relating to the topic of narrative and identity.
Episode #5 – Insights and "Aha!" Moments About Aphasia Care with Professor Emeriti Barbara Shadden https://aphasiaaccess.libsyn.com/insights-and-aha-moments-about-aphasia-care-with-professor-emeriti-barbara-shadden
Episode #55 - The Power of a Story: A Conversation with Katie Strong https://aphasiaaccess.libsyn.com/the-power-of-a-story-a-conversation-with-katie-strong
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“Black Americans Talking About Us” with Michael Obel-Omia, Donald Cunnigen, Denise Mendez, and Roy Hamilton
Interviewer info
Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.
Michael Obel-Omia
Michael Obel-Omia is a public speaker, writer, and educator who has aphasia due to a stroke in 2016. In his tireless efforts to improve, he has found poetry allows him to express himself in ways that speech cannot. An avid advocate for people with aphasia, Michael has published essays about experiences in the journal “Blood and Thunder: Musings the Art of Medicine; The Boston Globe; the Providence Journal; and Rhode Island NPR’s This I Believe. Michael lives with his family in the beautiful town of Barrington, Rhode Island.
Links:
Boston Globe article about Michael Obel-Omia
A Black Father Wonders: Is ‘The Talk’ Enough? by Michael Obel-Omia (Boston Globe article about disability and race)
Finding My Words: Aphasia Poetry by Michael Obel-Omia (book)
Ask the Expert with Michael and Carolyn Obel-Omia (National Aphasia Association video)
Roy Hamilton
Roy Hamilton, MD, MS, FAAN, FANA is a professor in the departments of Neurology, Psychiatry, and Physical Medicine and Rehabilitation at the University of Pennsylvania, where he is the director of both Penn's Laboratory for Cognition and Neural Stimulation (LCNS) and the Penn Brain Science, Translation, Innovation and Modulation Center (brainSTIM). His research uses noninvasive electrical and magnetic brain stimulation to better understand the neural basis of language and to enhance aphasia recovery. Dr. Hamilton has also been recognized nationally for his work in diversity in neurology and academic medicine. He served as the inaugural Assistant Dean for Cultural Affairs and Diversity at the Perelman School of Medicine and is the inaugural Vice Chair for Diversity and Inclusion in Penn’s Department of Neurology.
Links
brainSTIM
Laboratory for Cognition and Neural Stimulation
Instagram
Twitter: PennbrainSTIM
Donald Cunnigen
Dr. Donald (Doc) Cunnigen is Professor emeritus of Sociology at the University Rhode Island, where he was the first Black full professor of sociology with tenure since the founding of the university in 1892. He was a member of the steering committee that started the Black Americans with Aphasia Conversation group and continues to be an active member of the group.
Doc Cunnigen videos
2011 Harlem Book Fair panel on the Obama Administration
Hands in Harmony: Aphasia Clefs
Denise Mendez
Dr. Denise Mendez is an educator who worked for 29 years as a teacher, administrator, and curriculum coordinator. In 2017, she suffered the first of four hemorrhagic brain bleeds (from an AVM) and was never able to return to her job. Her life-long passion for teaching and advocacy is still there. Aphasia just changed who she serves. She has a website, More Than Aphasia.com and a podcast called Still Something To Say. Denise is one of the leaders of the Mid Atlantic Aphasia Conference, and a facilitator of the Penn State Alumni Aphasia Group. She also participates in multiple aphasia groups, including San Francisco State’s Black conversation group NAA’s Black Americans with Aphasia Conversation Group. Denise’s motto is “I have aphasia, but aphasia does not have me!”
Links:
https://morethanaphasia.com/
Twitter: MoreThanAphasia
Podcast: Still Something 2 Say Podcast on Spotify
Additional Notes:
Aphasia Access Aphasia Conversations Episode 102: Researching Health Disparities in Minority Stroke Survivors with Dr. Davetrina Seles Gadson
EDITED TRANSCRIPT
Lyssa Rome
Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication impairments in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration and ideas that support their aphasia care through a variety of educational materials and resources.
June is Aphasia Awareness Month, and I'm excited to be today's host for an episode that will feature the National Aphasia Association's Black Americans with Aphasia Conversation Group. I'll be talking first with Michael Obel-Omia, a co-founder and co-host of the group. Michael is a public speaker, writer, and educator who has aphasia due to a stroke in 2016. In his tireless efforts to improve he has found poetry allows him to express himself in ways that speech cannot. An avid advocate for people with aphasia, Michael has published essays about experiences in the journal Blood and Thunder: Musings on The Art of Medicine, the Boston Globe, the Providence Journal, and Rhode Island NPR’s This I Believe. Michael lives with his family in the beautiful town of Barrington, Rhode Island. Michael, welcome to Aphasia Access Conversations Podcast, I'm really glad to be talking with you today.
Michael Obel-Omia
Thank you so much. I'm blessed to be on this opportunity. Thank you so much.
Lyssa Rome
I wanted to start by asking you why you wanted to start an aphasia group for Black Americans.
Michael Obel-Omia
Thank you, Lyssa. I had a stroke on 21 May, 2016. And I worked very hard to be able to talk first. But no one had talked about being a Black person, about the ideas we had. So I talked to Darlene Williamson. And I said, this is great. I know so many wonderful people. Aphasia Resource Center is so plentiful, so wonderful. I've been creative writing, I've done Toastmasters, everything like that. But I still haven't spoken to Black Americans.
There are 2 million people who have aphasia. And probably about 10% of the population is a Black person. So I said to Darlene—I said, “Is it possible I could talk to people about being Black with aphasia, to talk about what's going on?” And she was very excited. She called Roy Hamilton. I spoke with him, from the University of Pennsylvania. I talked to him for a while. And it started, we started doing it. I started thinking about what we could do. We called a few people together, emailed. All of a sudden, I think in January 2022, we had people on the Black Americans with Aphasia Conversation Group, four or five people at first. But now, we have meetings twice a month in April, in May, etc. with 19 participants. It's a wonderful thing now. It's really great.
Lyssa Rome
Wow. So it's grown from this, this need that you felt, and that you saw, to have a space for Black Americans with aphasia, to… it sounds like a really thriving group.
Michael Obel-Omia
Yes. Yes, that's true. And again, please remember, there are dozens or hundreds of people with aphasia, and it's wonderful. It really is great—to hear from different people is wonderful. But this is a chance for a few Black people to talk about being Black.
Lyssa Rome
When the group came together for the first time, what did you think? Or what was your reaction when you were among other Black people with aphasia? What did that feel like for you?
Michael Obel-Omia
Well, of course, I'm an educator—28 years teaching English and everything and preparing for education, everything, English. So I was very nervous. The first time I said, “What am I gonna do?” I sat down and wrote out the outline of what I was going to do. I had to have all the ideas. I went on the internet for ideas—what's happening here, what’s happening there. I’m very nervous about things. I'm nervous about everything now, with the stroke, with everything, I'm nervous. But I was already prepared with an outline. I had it written down, ready to go. And I was ready to do that.
We started talking about, “Well, what are you doing? What's going on? How's it happening? What do you do that's so much fun?” So we started talking about things and talking about ourselves. And just chatting about things. I had my outlines so precise, written down, for conversations—being an English teacher. But now I just go in and I go in, I'm smiling and laughing about “What's going on. How are you doing? How is it, having aphasia? How is it, talking about what's happening? What's getting in the way?” And that is one hour. That's what it is: Black Americans talking about us.
Lyssa Rome
Sounds like a really meaningful experience. And when we first spoke about doing this podcast, you described the feeling of relief that you felt, being in a room with other people who shared this experience with you.
Michael Obel-Omia
Yes, I have great relief. I have a great feeling. I'm so relaxed, is what I am. When I'm talking to someone right now about podcasts, obviously, my senses are tense right now. My shoulders are high. I'm nervous. I'm worried about what I should say. But when I call the Black Aphasia Conversation Group, my shoulders drop down. There's great relief. Great relaxing, I'm smiling. I'm laughing. It's a lot of fun just to see what's going on.
There are serious issues too. One time, a woman wrote about fear and anxiety. What was going to happen, what I'm worried about, I think being anxious, having a stroke on 21 May, 2016. I'm really anxious about things now. Really, anxiety. I'm very worried things will happen. It's very silly. I mean, when I think about it, it's very silly, but I'm anxious about things.
So a woman asked us, “What about aphasia? What about anxiety?” And we talked about that. Dr. Gadson—Dr. Davetrina Gadson— talked about fear or flight. And of course, for me, Fate—Native Son by Richard Wright. Fear, flight, fate. So we talked about that very seriously, about what it is to be so anxious about things. So there are things that are fun and laughing and great relief and comfort, but fear and flight and fate. Yeah, that's there too.
Lyssa Rome
So it sounds like you are able to talk about a wide range of experiences that you have—both the joyful experiences, and then also the harder experiences and the anxiety and the other emotions that can go along with aphasia. You mentioned Dr. Davetrina Seles Gadson, who was recently on our podcast. The episode with her will be linked in our show notes. I'm wondering if you could describe how the group works a little bit more. What's Dr. Seles Gadson’s role? What's your role? You mentioned that you meet twice a month? Tell us a little bit more about the nuts and bolts of it.
Michael Obel-Omia
And so we're all on here on the Zoom 12 of us, 14, 19 participants, and we can talk about it. What makes us tick? What's happening? So everyone can talk about something. Everything—we can talk about it. We talked for about an hour—what's happening, what's going on. And it's wonderful.
Twice, or three or four times, we've had Black Jeopardy, which is Jeopardy with Black people. And she asks great questions. It's a lot of fun to hear. And we can laugh about that as well. It's great. And it's a lot of fun to ask great questions. It's just fun to talk about that. And people feel really good about ourselves.
But we stop for a few seconds to talk about: “How can I get prescriptions? How can I find about someone [to answer] questions or ideas or opportunities or issues? I mean, how do I get somebody? How do I find somebody in Philadelphia? How to find somebody near Maryland about this question? How do I find this out? How do I find speech therapy? How do I find that?” And sometimes it's pretty frustrating. It's like, “Well, I don't know how to do this anymore. I used to meet with a speech therapist, and now they say, ‘No—no more anymore.’ What can I do?” And so we talked about that.
Lyssa Rome
Yeah, yeah. So many frustrations and obstacles that aphasia can cause for people and I think it sounds like what you're describing is people with Aphasia in the group helping one another to find some solutions. Is that one of the functions of the group?
Michael Obel-Omia
Yes, I have the idea. I have aphasia. I have ideas of what I'm supposed to say, but sometimes I can hear people say something. And—excuse me, I try to be humble—I’m a pretty smart guy for years with aphasia. I was a teacher at Roxbury Latin, at William Penn Charter, University School. I was the head of school at Paul Cuffee School. I'm pretty smart. I can do that. Now, I got aphasia in 2016. I have the idea now, but I can't do it just right.
About a month ago with the Boston Globe—I just did an article in the Boston Globe about a time I was in North Carolina with Aphasia Access that day. Aphasia Access was wonderful with Stroke Across America. It was a wonderful, wonderful, wonderful night—Thursday, Friday, Saturday, Sunday. It was great.
I was at the airport in Durham, to get on at North Carolina at Charlotte. And I was anxious because I couldn't do something that the security officer asked of me and I froze. I was frightened. And I was very lucky—a very kind, very young Black man reached out to me, and said, “Come on, follow me. Come on.” And I followed him. And very simple, all of about 25 seconds. But I was very afraid. I was very worried about what I was supposed to do. What am I supposed to do right now? What do you want me to do right now? I was froze. But I walked easily—walked through very easily, very comfortably, very quietly. But yeah, I have aphasia. It's really hard. I can't imagine—I just can't imagine how hard life is sometimes.
Lyssa Rome
Yeah, yeah. And I mean, I think what you're describing are some of those moments where aphasia can really get in the way. And I can imagine that as a Black man in America, feeling frozen when someone has asked someone, say like a TSA agent in the airport, is asking you to do something, and you're not sure what they're asking you, there's an extra layer, or many extra layers, of experience, of history, of fear that goes along with that, that I'm not sure—as much as, say a white person who has aphasia can understand the experience of not knowing exactly how to respond to someone, not fully understanding what they're saying. I’m not sure that they can understand that, or it might be harder for them to understand that second level of your experience as a Black man with aphasia.
Michael Obel-Omia
Yeah, being a Black man. It is very hard. I don't think on a podcast you can see my face, but I write things the way I look at things. I can look very serious and very angry. But you know, my face is angry and frustrated, and I have to deal with that sometimes. And I can't do anything about it. Sometimes, I look very angry, but it is what it is. And I understand that sometimes I can be looked at this way. It's one of the chances of life.
Lyssa Rome
Michael, you told us about the origins of the National aphasia Association's Black Americans with Aphasia Conversation Group, and talked a little bit about how that group works. I know that there are some other similar groups out there. And one of them is San Francisco State’s Gray Matter Lab, which also has a Black Conversation Group. There are some Spanish-language aphasia groups as well. I'm wondering, what should people know about identity-based aphasia groups? What advice would you have for people who want to start a group like yours?
Michael Obel-Omia
Every single lives have aphasia, 24 hours, seven days a week. Always aphasia. Always. When this ends, I have to go back to my house, or my apartment, my home, wherever, and I have to think about aphasia. I'm always thinking about having aphasia. So it's wonderful to think about aphasia for one hour, twice a month, I can relax. I can say what I feel about things. I can laugh. I can stumble and fall over words. And it's okay. That's all right. It's fine. It's wonderful. And that's what this opportunity does every time. We can talk among ourselves, with other Black people, smile, laugh, be comfortable, relax. We can be worried about things sometimes. We can be anxious about fear and anxiety. Mostly we can laugh, what we're doing. And it feels right. It feels good for one hour, once every twice a month. So yeah.
Lyssa Rome
So I also had the chance to speak with some other members of the National Aphasia Association's Black Americans with Aphasia Conversation Group. And here's what they had to say about it.
[music]
My next guest is Dr. Roy Hamilton, professor in the departments of neurology, psychiatry and physical medicine and rehabilitation at the University of Pennsylvania, where he's the director of both Penn’s Laboratory for Cognition and Neural Stimulation, and the Penn Brain Science, Translation, Innovation and Modulation Center. Dr. Hamilton also serves on the board of the National Aphasia Association. Dr. Hamilton, welcome to Aphasia Access Conversations.
Roy Hamilton
Thank you. It's such a pleasure to be here.
Lyssa Rome
So tell me a little bit about why you think it's important for Black people for people of color, maybe more generally, with aphasia to have a space to meet with other people who identify in the same way.
Roy Hamilton
Well, first, I want to take a step back and talk about aphasia as it occurs in individuals who identify as Black or African American, you have to understand that aphasia has a couple of principal causes. For many individuals, it's on the basis of having had a stroke. For others, their aphasia arises from having a neurodegenerative condition, something called primary progressive aphasia. But for both of those causes, whether it be neurodegenerative conditions like underlying Alzheimer's pathology, or whether it's vascular disease like stroke, it turns out that individuals who are African American are at substantively higher risk than the rest of the population. And because aphasia is the most common cognitive manifestation of stroke, if we understand that conditions like stroke are much more prevalent in this population, we're also talking about a population that is substantively more burdened by aphasia or challenged by aphasia. So just on the basis of what causes the condition, we understand that we're talking about a population that is at greater risk.
Now, having said that, in addition to the incidence and the prevalence of the condition itself, there are also many, many barriers that prevent individuals who are Black in this country from obtaining all manner of care, and amongst that care, ways to address, or ways to help with their aphasia. And so, targeted efforts are especially important when you're trying to overcome these kinds of barriers.
And then thirdly, in instances where individuals are able to access care, it's often the case that they're treated differently. They receive a different level or a different kind of care than the rest of the population. So that's another reason why it is important to be focused and intentional and to think about creating venues, creating spaces, where we can focus on the needs of individuals who are Black, who are living with aphasia.
Lyssa Rome
So then, tell me about what you think this group is doing for the people who are part of it?
Roy Hamilton
Well, I think one thing that's important about the group is that it provides a sense of community, a level of comfort. I think that that comes through in the kinds of things that are discussed, the kinds of conversations that are had. They often range towards topics that are culturally relevant, that feel comfortable to the group. And here again, I want to draw a distinction or perhaps point to another aspect of having a focused, intentional group that makes it valuable. Groups of individuals who are brought together to have conversations have an easier time having conversations when they are comfortable with each other, when they're comfortable with the setting, and when you're talking about topics that seem relevant to them. So I think bringing all those elements to a conversation group is a particular value. And I think it's a particular value to this group.
Lyssa Rome
You mentioned earlier about the incidence and prevalence of aphasia for Black people in this country. So is there anything else that you want to add that you think is important to have in here, from your perspective?
Roy Hamilton
When we're talking about aphasia, and how it affects Black communities, I think the thing that I would emphasize is that this is not an issue that should only be of interest to individuals and communities who are Black, or persons who care for and work with persons with aphasia, who are themselves marginalized, or minoritized individuals. Health equity, and equity around aphasia is everyone's responsibility. And so I think it is perhaps as important, if not more important, that everyone be aware of disparities as they exist in aphasia, for individuals who are Black and other populations as well. And so I'm really glad that we are having this opportunity to have this conversation.
Lyssa Rome
Thank you. I think that that's an important note to end on. And I appreciate it. Thanks so much for taking the time to talk with me today, Dr. Hamilton.
Roy Hamilton
Really, it’s my pleasure. Thank you.
[music]
Lyssa Rome
My next guest is Dr. Donald Cunnigen, Professor Emeritus of Sociology at the University of Rhode Island, where he was the first Black full professor of sociology with tenure since the founding of the university in 1892. He was a member of the steering committee that started the Black Americans with Aphasia Conversation Group and continues to be an active member of the group. Doc, welcome to the show.
Doc Cunnigen
Thank you. What has it meant to me? It has been an important place where I can feel comfortable in sharing my experiences as a person who, well, basically suffers from dysarthria.
Once I was in another group, and I mentioned our group. And one of the members turned around and asked, “Why do you need an all-Black group?” And I had to say, “The fact that you asked that question is an indication of why we need the group!”
People feel comfortable in groups where they can express themselves the way they are, and not feel somewhat intimidated if they don’t speak proper English or people are making fun of their dialect. You may not feel free to say things the way you feel like saying them. So we explore issues on a regular basis that deal with our daily lives. And a lot of people don’t fully appreciate that we have a different journey through life as people of color. And we all have different racialized experiences.
There are some commonalities. But the one commonality is that we are Black in America, and that is a special thing in and of itself. And since we have aphasia, it somewhat colors all of our experiences, like negotiating the racism that one might find in institutionalized medicine. Sometimes it’s subtle and other times it’s blatant. But we often encounter it. And this group helps you to deal with it.
Lyssa Rome
Yeah, yeah. It sounds like you're describing a space in which you can both be yourself and then also connect with others who have an experience that people who aren't Black—people with Aphasia who don't have that experience of being Black in America—just might have a very hard time understanding. And so to have that space seems like a very important thing.
Doc Cunnigen
Well it helps us to get through the day, but it also helps not only with those institutional things I referenced, but little experiential things that we have, that people with aphasia, dysarthria, or TBI only know. That we have to deal with. People bring up, “Oh I have this problem, or I have that problem.” And we can share those types of things. So this is a very comforting place, where people share with each other the good times and the bad times.
Lyssa Rome
What advice would you have for people who are interested in starting identity-based aphasia groups?
Doc Cunnigen
Well, it helps to have someone who is sensitive to one’s cultural or linguistic abilities. That awareness is helpful. It will also help if there is someone who is culturally or linguistically identified with the group, but it’s not necessary, if you have the sensitivity. I think it is important not only for one to be sensitive, but to become a bit knowledgeable. Reciprocity, being able to exchange with the stroke survivor, is critical. Listen. Listening is very difficult for anybody, whether they have aphasia or not. Now that I have difficulty with my speech, I appreciate the ability to listen and have patience.
Lyssa Rome
Doc Cunnigen, thank you so much for sharing your thoughts about the group. I really appreciate it.
Doc Cunnigen
Thank you for having such a nice program.
[music]
Lyssa Rome
My next guest is Dr. Denise Mendez. Denise is an educator who worked for 29 years as a teacher, administrator, and curriculum coordinator. She has a website: morethanaphasia.com, and a podcast called Still Something to Say. Denise is one of the leaders of the Mid Atlantic Aphasia Conference and the facilitator of the Penn State Alumni Aphasia Group. She also participates in multiple aphasia groups, including San Francisco State’s Black Conversation Group, and the NAA’s Black Americans with Aphasia Conversation Group. Denise, welcome to the podcast.
Denise Mendez
Thank you so much, Lyssa.
Lyssa Rome
Denise, what has the NAA’s Black Americans with Aphasia group meant to you?
Denise Mendez
Well, you know what? The conversation group, it's sort of like—this sounds corny—but it's family, you know. It's a comfortable, safe place for us to check with one another, “How are you? How's everything going?” It's very familial. I don't know, it sounds weird. But like I call some of the folks there, different ones, I'll say like, “Oh, that's my cousin.” You know what I mean? Like, you've got all these cousins down this family line, but aphasia is what made us connected.
So we encourage one another, we teach each other, we just share information from other people. The beautiful thing is, people are all over the United States. It's not just a little group out of Philadelphia, or out of the New England area, because that's where our leaders are, but we're all over the United States. And we're connected. It's very comfortable, where sometimes, different things that happen in the United States, I mean, come on, let's not even go into the whole history of the United States and all of that, but you're going to get different perspectives when it's a group with all African Americans there. You have different perspectives than, say, your general population. What's very good about the groups are the groups are aphasia-friendly. Nobody's talking up here. Nobody's talking underneath anyone. It's just a conversation. It reminds me of how we used to have in the summer, and your whole family would be there. What are those called when your family…
Lyssa Rome
Like a family reunion?
Denise Mendez
Reunion, thank you, when everybody's there. So you've got some young people there, you've got some of the seniors there, you've got the middle group there. But everybody's having a conversation, and everybody's putting a little bit of this on, we're sharing some music, we're sharing some games. And guess what, when people have a bad day, or a rough time, or they just need to vent, it's a space for them to do that as well.
Lyssa Rome
Yeah. That brings me to my next question for you, which is, you know, you've been part of these two groups plus many others. What advice would you have for other people with aphasia who are interested in starting an identity-based aphasia group?
Denise Mendez
You got to have trust, if people don't trust that this is a safe place, that this is a place that I can just say what I want to say, the way I say it, I don't have to measure my words, or people are going to judge me, because I'm using double negatives, or dropping off the INGs and things like that off your words, then it's just a more free conversation.
So I applaud anyone who would like to start an identity-based group. But just know, you can't just wake up and say, you know, I'm gonna do that tomorrow. You've got some homework to do. So do some homework, find out what the need is for the group. And just remember, you've got to be authentic, you may not be a part of the identity group. That doesn't mean you still can't be effective facilitating that group.
Lyssa Rome
I think that's great advice. And I really appreciate hearing from you about what this group has meant to you and also your thoughts about these kinds of identity-based groups in general.
Denise Mendez
Yeah.
Lyssa Rome
Dr. Denise Mendez, thank you so much for being part of this podcast.
[music]
Lyssa Rome
Michael, I know you brought in the mission statement that you wrote, when you were starting the Black Americans with Aphasia Conversation Group. Would you like to share that with us?
Michael Obel-Omia
Yes. The Black American Aphasia Conversation Group is a place for Black people, the patient to share their stories, provide support, encourage meditative reflection, and brainstorm ways to advocate for relevant policies. This diverse, inclusive, aphasia-friendly group will discuss the unique challenges and gifts we share due to our experiences with disability and race. And it's open to all who support its mission of creating an emotional refuge for Black persons living with aphasia.
Lyssa Rome
I think that that mission statement is such an important summary of what you've been talking about, of the kind of space that it sounds like you've been able to create with this group.
Michael Obel-Omia
Well, thank you, thank you so much. With being this part, it's great for you to hear about it.
Lyssa Rome
It sounds like you've found, in that hard work and the advocacy that you've done, you found another way to make a meaningful difference for other Black people with aphasia, who are part of this group.
Michael Obel-Omia
Absolutely. Yes.
Lyssa Rome
Thank you so much for talking with us, for sharing about your group—about the National Aphasia Association’s Black Americans with Aphasia Conversation Group. Michael Obel-Omia, it has been such a pleasure talking with you.
Michael Obel-Omia
Thank you very much.
Lyssa Rome
And thanks to Dr. Roy Hamilton, Doc Cunnigen, Denise Mendez and Darlene Williamson of the National Aphasia Association.
Thank you also to our listeners. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected] Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.
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Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.
I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature Dr. Alyssa Lanzi. In this episode, we'll be discussing Dr. Lanzi’s research on mild cognitive impairment and the role of the LPAA approach in serving individuals with mild cognitive impairment and dementia.
Biosketch:
Alyssa M. Lanzi, Ph.D., CCC-SLP, is a speech-language pathologist and Research Assistant Professor in the Department of Communication Sciences and Disorders at the University of Delaware. She is an executive committee member of the Delaware Center for Cognitive Aging Research at the University of Delaware. Dr. Lanzi is the PI of a K23 award from the National Institute on Aging to investigate the effects of an intervention designed to improve the independence of older adults with mild cognitive impairment from probable Alzheimer's disease. She is also MPI of awards that develop, test and disseminate a large-scale online database to study the language and cognitive skills of older adults to help develop cost-effective biomarkers to identify adults at risk for dementia from Alzheimer's disease. Dr. Lanzi's research broadly focuses on investigating person-centered assessment and treatment approaches for individuals with mild cognitive impairment and dementia and prioritizes the implementation and dissemination of evidence-based practice to practicing health professionals.
Take aways:
The LPAA fits interventions for mild cognitive impairment too. We need to focus on training the next generation to understand the applications of LPAA to other disorders and contexts. You don’t always need a standardized test, you can use goal attainment scales to measure anything. We need to be prepared to counsel individuals with mild cognitive impairment, as we are often the discipline having those conversations. When we intervene with individuals with mild cognitive impairment early, we can involve them as collaborators. There is a continuum of counseling needs that changes over time. See Alyssa’s counseling plus paper in SIG 2 Perspectives.Interview Transcript:
Jerry Hoepner: Hi Alyssa. Good to see you.
Alyssa Lanzi: Hi, good to see you. I'm happy to have a conversation with you today.
Jerry Hoepner: Likewise, I'm looking forward to this conversation. It's kind of tradition that at the beginning of podcast we talk a little bit about your journey in your path to the life participation approach. So, I’m hoping that you can share a little bit about why an LPAA approach is so crucial to your research and clinical interactions.
Alyssa Lanzi: Yeah, Absolutely. Well, thanks for having me, and I’m excited to kind of give a glimpse into how we can start to think about the LPAA approach outside of aphasia, because I think I’m a little bit unique in that way. And I am clinically trained as a speech language pathologist, and I was fortunate that most of my master's training was in a really strong university-based life participation approach model for aphasia. So, I had a large amount of experience working with Dr. Sarah Wallace and Katerina Staltari, and really thinking about group-based approaches for aphasia care. And I really fell in love with the functional nature of that model and with my master's thesis really tried to think about, well, how can we do this with individuals at risk for dementia with thinking about group-based approaches and functional care. And then I went on to get my PhD at the University of South Florida with Michelle Bourgeois. With a really strong research focus on functional approaches for mild cognitive impairment and dementia but also had the opportunity to work clinically the entire time during my PhD at voices of hope for aphasia under Jackie Hinckley, really learning about the life participation approach for aphasia. So, I feel super fortunate in that I have a lot of clinical work and exposure with the life participation approach that really has driven my research. Although I don't clinically practice with the life participation approach anymore, it really is a key foundation and a key kind of framework to how I have conducted all of my research and run the lab at the University of Delaware, which I'm currently a research assistant professor at right now.
Jerry Hoepner: Excellent. Yeah. And thanks for sharing that, I really believe there is not a lot of transferability and generalizability of the LPAA in the approach being someone who has one world or one foot in the traumatic brain injury world, and another foot in the aphasia world. There's definitely some strong carryover across those contexts, and I think members of aphasia access are really interested in thinking about how that extends into those contexts. So, I really appreciate that. And like I said before, you have quite the pedigree in terms of experiences with very life participation approach minded academics, and having some of those clinical experiences, is really just so crucial for those, you know, when you step into the research world that you're doing something that really applies. So, I know you already talked about Sarah Wallace and Dr. Satari and Dr. Bourgeois and Jackie Hinckley. But are there other people along that journey that have kind of shaped the way that you think about LPAA applications to aphasia but beyond obviously?
Alyssa Lanzi: yeah, I think you know, really the names that you mentioned were kind of the key mentors in the process. However, individuals like Roberta Elman, and really her approach to kind of book and learning and reintegration was structured. But flexible activities are really kind of key to my thinking, and also, as you know, an early career researcher as well. Folks like yourself and Tom and Katie really show how we can also train students in this approach as well, which is kind of being key to figuring out how I really run this lab that's based in life participation. That's not only my line of research, but also supporting the next generation. I feel fortunate in that I have mentors that really have integrated a life participation approach in many different settings from big R1 universities to smaller, R2, and R3 universities to clinical practice settings to nonprofits. And I think I've taken pieces of all of those to really support my research and teaching pedagogy, and really life participation in that way, and without aphasia access, I wouldn't have had access to those leaders and mentors in the field like yourself, and it really has given me an opportunity to have conversations with these folks, and every single conversation has really impacted and influenced my work thus far.
Jerry Hoepner: I think that tends to be a really common reflection on aphasia access that everyone is so accessible. So, the name really says it, and willing to have those conversations. And certainly, that supports us in all of those avenues, research, clinic, well and academic in terms of teaching as well so completely agree with that.
Alyssa Lanzi: I think that's what's a beautiful thing about aphasia access and the life participation approach is that it's not just research, either. Right? It's research, it's clinical, it's teaching, it's mentoring, it's service. And I think we will probably talk about in a little bit. But in all of my work that's really what I try to think about, I don't just try to think about, you know, research, I try to think about well, how can I study this so it can actually be implemented in clinical practice? And then how can I also teach the next generation using this approach in that way? And I think that framework, although we often think of life participation as like a clinical approach. In some ways it's really this entire framework to all those kind of core components that are necessary in terms of teaching, research, clinical care and service.
Jerry Hoepner: I really love the way that you describe that, because I don't know that that's been done really clearly before. But there is a thread running through all of those pieces, and it kind of speaks to your experience with Jackie Hinckley in terms of thinking about that implementation piece, and how we make sure what we're doing matters, and is the right stuff in the first place. And obviously teaching is near and dear to my heart, and being able to frame that in a way that students understand, but also feel like it's not something that's high in the sky that you know only a few people do, but that's accessible and usable by everyone, and even for my students. I mean, I know that a lot of my students will end up in a school setting, and I know that these foundational principles of LPAA still have relevance to them. So, I say, you know, regardless of where you're going. This content matters, and it should shape the way that you think conduct LPAA work.
Alyssa Lanzi: Yeah, you don’t have to be at a center to conduct LPAA work, you don’t have to be with people with aphasia to conduct LPAA work, and that's the cool part of it. And having these conversations is an opportunity to kind of brainstorm with one another of, well how do we take you know, from the traditional mold, how do we kind of break that and really think of it as threads that can be kind of interwoven into all these elements that are core components of our discipline in a lot of ways.
Jerry Hoepner: Agreed. Maybe that's a new task for aphasia access worker to kind of map all of those pieces, because I do think not. Maybe individuals have those pieces, but it hasn't been all put together. So, I appreciate that overview.
Alyssa Lanzi: And yeah, hopefully.
Jerry Hoepner: well. I've been having fun re-reading and refreshing myself on your work on. I used a lot of it within my teaching so. But it's always fun to see when you read something again that you pick up something that you just didn't even like process before or you don't remember you process it, maybe. But clearly, I mean, there's this thread going through all of it about person-centered strength-based care right at the heart of all of that. It really one of the things that stood out to me the last couple of days as I've been meeting is that emphasis on fostering choice and collaboration along the way in every single step with the with the individual, with mild cognitive impairment or dementia, with their family members. And I think that's really crucial. I mean whether you're kind of choosing an external memory aid, or script, or whatever is best right. Can you talk about how you facilitate those choices? Maybe a little bit about the kinds of tools that you use on one end, but also a little bit about how you just foster a mindset of that collaborative decision making, because, you know, sometimes people can just want to defer to you and say you tell me so. I'm interested in your thoughts on both of those pieces.
Alyssa Lanzi: Yeah, Absolutely. Well, thanks for the flattering words, and I’m happy. You picked out the core elements there, because I think those are really kind of the key words of a lot of the work that I try to do, and starting really with person or family centered, in that way, and it's tricky. I think a lot of people say that their work is person centered, and we can always argue. What do you mean by that? And how do you ensure that, same with functional right? But something I try to teach people, and my students are just because it's related to something practical doesn't necessarily mean it's a functional approach, either, you know, so really kind of parsing out by what we mean by that. But in particular, with working with folks with mild cognitive impairment and dementia, the goal is to really support their independence for as long as possible, and then to support their quality of life right? And a lot of times when thinking about people with chronic aphasia, it's very similar in that way, right? And that, you know, kind of gotten to a point. Not that improvements can no longer been made, but the shift is really about like, well how can you live the best life as possible? Right? How can we get you participating in as many things as possible, and that’s the same mindset when we're working with people with mild cognitive impairment in particular. So, when I’m trying to design the treatment approaches that I'm testing with my clinical trials. Really, the whole framework is, how can we make something structured and standardized but flexible to that individual’s needs. So, I think it starts from a treatment level, figuring out what are the active ingredients? What are the things that can't be changed, what are the core elements that can't be changed. And then, once we figure that out, then the meat of the sandwich, you know the meat of the treatment can be customizable to that individual right. And a lot of this work really comes from McKay Solberg, and views of cognitive rehab as well. But I think, when we think about person centered, we need to think about what are the core elements of this evidence-based approach? What are the active ingredients? And then what are the things that can change in between right? And when we're talking about external memory aids, it's not enough just to give somebody a calendar right. We're not seeing that individuals actually continue to use this calendar later on. And I would argue that's because of 2 reasons, one because we didn't systematically train them, and the use of it and 2 is because we didn't include them in the process from the start to the finish. And you are asking about what kind of tools and what things can be helpful. And in terms of thinking about goal development tools, a lot of times we can lean on our colleagues and occupational therapy and use a lot of the models that they have for goal development. So, they have the COPM which I'm probably going to butcher the name, but it's the Canadian Occupational Performance Measure, I believe it is, and that can be a really great tool to have a structured approach to goal setting. Same with goal attainment scaling, and incorporating some motivational interviewing techniques on top of it. But the key is that you have some type of structure, some type of evidence-based approach, on top of the conversation that you're having right, just asking somebody their interests is important, but we need to think about what's the best thing for our buck, since we have such limited time with them. So those 2 tools, in terms of goal setting have been really helpful for me, paired with using patient reported outcome measures and kind of figuring out how to use that as an initial conversation, and then paired with some further probing of tell me more about these items. Tell me more about the issues that you're facing. And then what I think is tricky, and where I relate most to my life participation colleagues are, what are the outcome tools, or what are the treatment planning tools that we can use to design these participation approaches. And it's hard because most of the outcome tools that we have are developed for looking at impairment-based improvements, right? So very decontextualized type tasks and that's really tricky. If the treatments that we're doing are all meant to be functional and person centered and improved participation. But we're not looking at necessarily improvements in worthless learning, or serial sevens or things like that. So, I couldn't figure out any tools. So, part of my dissertation work was designing a measure that was really aimed to help drive treatment planning. And then look at if there's gains an actual participation, so that tools called the functional external memory aid tool, and my lab in the last year or so have tried to do a lot of work, and coming up with free resources to train students, clinicians, and researchers, and how to use this tool to drive treatment planning because it's a little bit of a different way than we think of how to use assessment tools. Traditionally we think of assessment tools to tell us is that that person has an impairment or not and this is not designed in that way. It's really designed to tell you how to design your treatment, and a functional meaningful in person-centered way. I don't have great answers of what the tools are, but I think collaborating with clinicians and collaborating with evidence-based researchers really helps us to try to fill that gap in some ways.
Jerry Hoepner: Yeah, and I think you got at part of it when you talked about goal attainment scales that you could make that a measure of any goal that the person identifies themselves. You don't necessarily have to try to fit a tool around that you can just measure what they hope to change right, or what they hope to sustain in terms of function. So, I think that's really good and really helpful. Just want to kind of circle back to a couple of things you talked about active ingredients, and how to really recognize what those active ingredients are, what the cores are, and what is content that you can do without, so to speak, made me think of some of the recent work in RTSS from the standpoint of really mapping that out. But I think that principle of my own is really important. Just to be able to say what is at the core? What do I always need to do? And what is kind of supportive of that, and can be individualized? So that's really helpful.
Alyssa Lanzi: That shouldn't be on the clinician either right? If you’re a clinician listening to this like that shouldn't be on you. This is on the researchers to consider from the beginning, and this should be really clearly outlined in this plan. And it is somewhat hard to figure out what some of these analyses like what are the active ingredients? But that's really, if you go to a talk, if you’re a clinician on this call like that's what you should be asking, when you go to these talks like, what are the active ingredients? What do you think is really evident of what's making the change? It's not on you to decide. It's really on researchers to be thinking about this from the beginning, and not for you to try to figure out by any means.
Jerry Hoepner: Yeah, I think that's a really some really sound advice, because finding out what those active ingredients are that's really crucial, and I think there's times, and I won't say who, but I reached out to a researcher once to do some work related to their work, and I said, “So do you have some place where you have more specific information about what exactly you did?” And they said “it's all in the paper” and I was kinda like no, it's not all in the paper, and I think we're getting better at that, providing that information, at least to the best of our knowledge, what those active ingredients are. And you know this is on the researcher to provide that, and then to allow that clinician to be able to work within that framework. So, I'm really glad that you said that. I also wanted to highlight the fact that you talked about your measure, and I think the acronym is FEAT right?
Alyssa Lanzi: FEMAT, yep, close.
Jerry Hoepner: Sorry. Missed it. I missed one letter, but we'll make sure that that is in the list of resources at the end as well, so that people know how they can access that information, and you mentioned that you're trying to make as much freely available as possible. So I think that's really helpful for our listeners to know where to find that information.
Alyssa Lanzi: Yeah, the tool can be downloaded completely for free. And there's educational and training resources for free on there as well as we just publish an open access manuscript, describing with case examples of how to use it as well, because if we as researchers want clinicians to use our work. Constantly, we're hearing the biggest barriers pay walls and everything else so really trying to make this as accessible as possible, so that individuals can actually use it in their practice.
Jerry Hoepner: Well, that's really excellent. I really appreciate it, so I’ll double check with you at the end, and we'll make sure we have all of that information there for the for the listeners to follow up on that. So, getting into the connection and the differences between someone with aphasia and someone with a mild cognitive impairment. There's a lot of overlap and most communication supports. And as I was reading your work, I was like overlap, overlap, overlap. But there's also some ground that isn't overlapping individuals with aphasia, particularly when you get to the cognitive kinds of constructs, and so forth. So, in terms of supporting someone with MCI or dementia. What are the key distinctions that you have in your mind about how to approach that. So, distinguishing them from maybe what you would use for a language assessment, or language support excuse me, for someone with aphasia
Alyssa Lanzi: I think the good thing is, there's many more similarities than differences. Right? We have this strength-based approach, this idea of participation, reintegration, isolation, depression. These are all major psychosocial factors that we know are associated with both populations and also acute. You know older adults are highest at risk. Right? We're seeing similar populations in some ways as well, so that strength-based participation-based reintegration, type approaches are all very similar. You know the key distinction or the key differences, I should say, is unlike people with a stroke, there wasn't an event that caused the impairments right, and that instead, we need measures that are really sensitive to early declines right? So, it's not like these individuals had a stroke or a brain injury, and immediately referred to speech, language, pathology. That's a very different pipeline to referral in that way. So, speech, language, pathologists need to do a much better job of advocating for our role early on where I don't think we have to do as much of that advocacy with people with aphasia now. Yes, all the aphasia folks don’t come at me either because I know there's plenty of advocacy work that we need to do as well, but it it's a little bit different right, and that once aphasia is diagnosed, it's pretty clear that SLPs are the one to go to for the most part. For individuals with mild, cognitive impairment it's a bit different. So, we need to do a lot of advocacy work, and many of our tools, unfortunately, are not sensitive enough to these early declines. What's exciting is that language is actually showing as a pretty promising tool, a pretty sensitive metric. So, hopefully in the next, you know, 5 to 10 years we're starting to actually definitely be involved because we're noticing language changes or sensitive to these early declines, but so one is the early process, and the referral process is quite different. The other key difference in my mind is the preparation for the future and that individuals of mild cognitive impairment are at a very high risk for developing dementia due to Alzheimer's disease and in my work I am talking about mostly these clinical syndrome due to Alzheimer's disease is usually the bulk of my work. But for individuals with mild cognitive impairment. We really want to set them up with these tools, so that we can develop really strong habits and routines now and really rely on the strength of procedural memory, so that if they decline, they have these really good systems in place, and that's a very different mindset than people with aphasia. So, the mindset in that way is very different in our role in preparing for the future. So, I think the referrals is probably the big pipeline. How they get to you. The coping and the depression is all there. But viewed a bit differently. It's not, Oh, my God! My life has drastically changed instead it's, Oh, my God! What's gonna happen, you know, in 2 3 5 years. So, it's all those same constructs are there, but the rationale and the underpinnings are a bit different.
Jerry Hoepner: I want to just go back to a couple of the points that you said again. When I’m thinking about that that early intervention or early work with someone with MCI, I’m always telling my students part of what you said that idea that we want to establish those routines and habits. But the other thing I always think about going back to our previous discussion is that's the opportunity for them to make as many decisions about their future as they possibly can, and do that planning for the future. I find that to be a really effective way from a counseling standpoint to get them involved in kind of planning their future, and also building that acceptance right like this is coming. What can I do now to kind of take ownership and to take control of that versus if I wait, then it's going to be someone else's decision.
Alyssa Lanzi: Exactly. Exactly. We describe it. A lot of you want to be in the driver's seat and not the passenger seat.
Jerry Hoepner: Yeah, great metaphor. And I just wanted to mention one other thing when you were talking about that the fact that language is a really sensitive measure. You believe for individuals with MCI and predictors of for their dementia. You know some great work with the dementia bank in terms of talking about collecting samples and interpreting those samples. So, I know I’m kind of putting you on the spot for this. But any thoughts about that might lead us in the future in terms of knowledge.
Alyssa Lanzi: Yes, stay tuned. We more than likely have a pretty big grant coming our way, which is going to be exciting. But the current biomarker tools for detection, are costly and invasive. We're having MRI and imaging techniques which are costing, You know, so much money. Blood is becoming, you know, blood based biomarkers are at least a bit more cost effective. However, there's still quite still, quite invasive, and there's only a certain person who wants to come into a lab, you know, and do those types of things. So what we're hoping is that we can use language, and that people can provide us with language samples in the comfort of their own home, right and really reflective of these functional tools and paired with these other. You know data, this, this other data that we're collected, we can make this really kind of informed decision or inform diagnosis. So, hopefully, you know, we can get to the point where that is the case that people can kind of just answer some questions from the comfort of their own home and their smart home and their computer. And you know, on the back end we can analyze their language, and then, provide them with some information about what we're thinking in terms of diagnosis and things like that. The most exciting thing to me in my mind about language is that hopefully, we can get a sample of individuals to participate who are actually representative of those who have the disease and that with many of these imaging techniques, and with many of the blood-based biomarkers and these invasive techniques, there's only a certain type of person you know who wants to come to campus and do these things, and most of our large databases are really white, high SES folks who are just, not those who are at greatest risk for the disease. So, what I'm really hoping for with as really the area of language grows, thanks to a lot of the work that we're doing, and Carnegie Mellon are doing with Brian and Davida, and also Kim Mueller and her group at Wisconsin. Is that not only can we use it as a sensitive measure, but we can get people to participate because, hopefully, it reduces the common barriers to participation in research studies. So that's really kind of a focus of where we're going. And then, hopefully, with that information, we can better support those who are at greatest risk living with this disease.
Jerry Hoepner: Right and it seems like there's kind of a secondary effect to once you have those answers. There's a lot more SLP’s than there are, you know, other mechanisms for measuring those bio measures. So, if you know that contact, maybe we can contribute to that earlier detection as well, so that's fantastic.
Alyssa Lanzi: Yeah, which is why we need more SLPs going in this space, and I love aphasia work. I'm an aphasia clinician at heart. But I hope we see after today and through many of my other colleagues that the world overlap so much. But we really need a lot of researchers in this space, because speech language pathologists have a lot that they can contribute, and could very soon be at the forefront of the of the diagnosis as well. So, any students on the call or clinicians wanting to go back. My labs and others are really recruiting, and we need more individuals who are interested in researching in this space.
Jerry Hoepner: Yeah, that's great to share. And hopefully there are some students and professionals out there that are thinking about that so definitely need that. Well, I’m going to change gears just a little bit. You've talked a little bit about depression and other mental health issues a little bit, isolation that occurs not only with aphasia, but with mci and dementia. I think we're all starting to get a better idea of our roles as speech, language, pathologists, in terms of counseling individuals with aphasia, MCI, dementia, traumatic brain injuries, etc. In re-reading your 2021 paper about counseling, plus I was really struck by how you and your co-authors mapped out this continuum of counseling needs kind of makes me want to do the same for everything so in activities from the first symptoms and diagnosis to the end of life, and I’ll refer our listeners to figure one because it's a really eloquent framework for, and timeline for those changes. Will you share a little bit about the development and kind of the purpose of that timeline figure.
Alyssa Lanzi: Yeah, thank you for the kind words that was probably one of the hardest things I've ever done was writing that paper, but we knew it needed to be done for many different reasons, but really to paint the picture that SLPs have a key role from the start all the way to the finish with these folks, and that's really what that figure is trying to highlight is that we can provide both primary and supportive roles to our colleagues from prevention and education all the way through end of life. And fortunately, that figure has really resonated with a lot of people which has been really helpful and I've actually gotten a lot of feedback from clinicians who've been able to use it to advocate for their role in this working with this population and doing support groups and things like that. So that's really great, because that's the whole point of it. But what's unique about this paper is that I work on a very interdisciplinary team of neuropsychologists and geriatric psychiatrists. And it was really interesting to come at it with all 3 of our mindsets for kind of developing this, because everybody has a very different education in terms of these important psychosocial constructs. So a really big shout out to my colleagues, Matt Cohen and Jim Allison, who really also helped me push my mindset of thinking about counseling as much more than just a conversation, and really thinking about counseling, plus as we call it, in terms of everything else right, and that a conversation is only the start of it, and that education and management and advising and referrals, that's all, that's all the big piece of it. So, I think that's why we were able to really round out this figure is because we were coming at it from 3 different disciplines as well, and then being able to go back to okay Well, what's within the scope of practice, of speech, language, pathology. The other thing about this figure is you'll see that the x-axis, the way that we looked at over time was by residential status, not by necessarily MMSE score or MoCA score right, and that framework was very much from my background in life participation approach in thinking about okay, let's think about them on a continuum of like residential needs versus what is their cognitive status on like an impairment type measure. I encourage people to think that way when we think about working with older adults in particular with neurodegenerative conditions, and that not thinking about them as a numerical value in a stage on one type of those measures because I think it opens up our roles, and also shows how hopefully within that figure that you can see that the roles overlap. Right, there's some roles that we start from our first conversation that we're going to continue all the way through the end of life. The other really important thing to consider with the figure, is in our field we have a really strong understanding of like language milestones in pediatrics, right? But what we don't have a really good strong foundation is, is understanding what is typical aging right, and our role in supporting healthy aging as well. Just as we support language development in pediatrics. So that's a big piece of this figure and a big piece of the counseling article is that we have a major role like we do in language development in healthy aging development as well, and that we can do a lot to support healthy aging and prevention just like we do in language development of kids, and also like we do like with the FAST acronym for stroke or with concussion protocols and management, we just haven't, yet kind of adapted that approach to aging, and that's what hopefully this figure gets us to start to think and talk about as well.
Jerry Hoepner: I think it definitely does. And I really like that analogy or metaphor comparison between the developmental milestones, because I was thinking that as I was looking at the figure, this is really similar. It kind of reminds me of, like the norms we looked at when we were in child phono or child language development laid out in the same kind of framework. So, I think that's something that is really comprehendible by the average SLP, and I think that's helpful, and I and I love how you describe x-axis in terms of those descriptions rather than numbers, just so crucial to see the person from that lens rather than as simply those numbers. So.
Alyssa Lanzi: Yeah, in addition to my LPAA colleagues, my early intervention birth to 3 colleagues, or who were the closest with in a lot of ways, I definitely the treatment approaches the in-home approaches. They're in the next group, I would say. That is pretty close to LPAA as well in some ways is early intervention. Birth of 3.
Jerry Hoepner: Agreed. Yeah, that's it. Another really great point. The other thing I really liked about the terms and you mentioned this: I think part of this comes out of the interprofessional kind of nature of development. But when you look at them, sure some of them are, you know, you think. Oh, yeah, that's counseling still, but many of them you don't necessarily wait to. Oh, yeah, that's in my counseling tool belt, and I think it's important for people to recognize those things are a part of that counseling process, and that can make it a little bit more accessible. I mean, we know that from an education standpoint that people are intimidated by counseling, and they feel unprepared and inadequate to carry out those steps. So, I mean just being able to see that on paper and say, I can do these things, I know these things, I think, are a really valuable part of that framework as well. So.
Alyssa Lanzi: And to make sure that when we are describing counseling to our students, we’re describing that as well, right, because its such a daunting thing for our students and if we help them in the beginning set up education, it really breaks down some of the common barriers to providing counseling of its daunting and scary. But a support group is one really small element of counseling that's within our scope of practice and our scope of practice does define it really well. I just think that how we describe it in articles is way too specific, and we need to think about it much more broadly and through, like the journal that you're responsible for with teaching and language. And you know we're starting to develop these models which is really helpful as well. But I agree, I think we just need to step outside of our really kind of specific way of thinking about counseling, because once again, then, by having a more broad continuum viewpoint. It really shines through our role. And why we are such key players of the team.
Jerry Hoepner: Yeah, agreed. I mean, we are always going to be the ones who are put in that moment, that counseling moment we have to be prepared and stepped into it so obviously. That's my bias. But I think we always are. Well, this has been a fantastic conversation, and I could go all afternoon, but want to keep this reasonable for our listeners too. So, I want to end on kind of a broad question, just in terms of what's your advice for SLPs and other disciplines, for that matter, in terms of working with individuals, with mild cognitive impairment and dementia, specific to the use of the external strategies and supports, but kind of weaving, counseling into those interactions?
Alyssa Lanzi: Make sure we're really listening to our patients and our families and take that extra second to pause and really make sure they feel valued and heard because especially for these individuals, they're scared. They may not yet see consequences in their everyday life. So, we need to really have a lot of buy in, and good rapport with them from the beginning, because they can make key changes in their life that may actually delay the onset of dementia. But they need to have buy in from you, and they we need to really promote behavior change and to do that they need to feel, listened to and heard. So, take the extra second and make sure you're doing that. Then I think, make sure that we are providing evidence-based approaches around these strategies that we are teaching and the 3-step approach by Solberg and Mateer and the pie framework. All of these, you know, meta-cognitive strategy frameworks. It starts with education, and we need to make sure that our clients have a really big education of what even is the strategy? What are all the components of the different strategy? Why is it they are even using the strategy right? Don't, jump into training the strategy yet, really start with the education and use the teach back approach, and make sure that they can help you in that way and then make sure you also don't view your approach as linear, things are going to change right, and you're going to have to go back a step and go to education. But you know I think functional is key and important, but it doesn't mean that we take away the evidence based, either right. And it's really thinking about how to integrate both of those things, and being honest with yourself and your client if things aren’t working, and you need to readjust as well. But if your patient feels valued and heard, then that's the first step, and we need to make sure that we're continuing that step all the way through to the end of the sessions.
Jerry Hoepner: Absolutely agree. Well, again, it's been a fantastic conversation. So really, thank you so much on behalf of Aphasia Access for your time and your insights and hope to see you again soon.
Alyssa Lanzi: Yes, thank you. Please feel free to reach out. And if you ever see myself or my Doc students, Anna or Faith, or my colleague, Mike Cohen, at a conference. Please say hi to us as well. We love talking about our work and brainstorming with others, especially in the LPAA world.
Jerry Hoepner: Sounds terrific. Thank you, Alyssa.
Alyssa Lanzi: Thank you.
Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.
Articles & Resources:
Cohen, M. L., Harnish, S. M., Lanzi, A. M., Brello, J., Victorson, D., Kisala, P. A., ... & Tulsky, D. S. (2021). Adapting a Patient–Reported Outcome Bookmarking Task to be Accessible to Adults With Cognitive and Language Disorders. Journal of Speech, Language, and Hearing Research, 64(11), 4403-4412. Lanzi, A., Burshnic, V., & Bourgeois, M. S. (2017). Person-centered memory and communication strategies for adults with dementia. Topics in Language Disorders, 37(4), 361-374. Lanzi, A., Wallace, S. E., & Bourgeois, M. S. (2018, July). External memory aid preferences of individuals with mild memory impairments. In Seminars in Speech and Language (Vol. 39, No. 03, pp. 211-222). Thieme Medical Publishers. Lanzi, A. M., Saylor, A. K., Fromm, D., Liu, H., MacWhinney, B., & Cohen, M. L. (2023). DementiaBank: Theoretical Rationale, Protocol, and Illustrative Analyses. American Journal of Speech-Language Pathology, 32(2), 426-438. Lanzi, A. M., Ellison, J. M., & Cohen, M. L. (2021). The “counseling+” roles of the speech-language pathologist serving older adults with mild cognitive impairment and dementia from Alzheimer's disease. Perspectives of the ASHA special interest groups, 6(5), 987-1002.Links:
FEMAT Website
FEMAT Open Access Manuscript
Delaware Center for Cognitive Aging Research- Free Memory Screenings
Counseling+ Open Access Manuscript
DementiaBank Open Access Manuscript
DementiaBank- Free Discourse Protocol
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Welcome to the Aphasia Access Aphasia Conversations Podcast. I’m Katie Strong, a faculty member at Central Michigan University where I lead the Strong Story Lab. I’m also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Mary Ann Eller. We’ll be talking about incorporating the Life Participation Approach to Aphasia (better known as LPAA) in Acute Care Settings.
Let me first tell you a bit about our guest.
Mary Ann Eller, MA, CCC-SLP is the Assistant Manager for Rehab Services in the Speech and Language Pathology Department at Duke Regional Hospital in Durham, NC. She has worked in the Duke University Health Care System since 1989. She specializes in evaluating and treating adults with neurogenic and swallowing disorders in acute care and inpatient acute rehab. Her current professional passions are finding functional, practical, and patient-center approaches to the care of people with aphasia, dementia and all cognitive/communication problems.
In this episode you will:
Receive a permission slip to do secret therapy. Hear about how the Life Participation Approach to Aphasia Core Values can be implemented into acute care. Understand how implementing the Life Participation Approach to Aphasia supports the Joint Commission standards on health literacy. Be empowered to welcome interruptions and struggles and embrace the messiness and the creativity and the joy of using LPAA in acute care.Katie Strong: Welcome Mary Ann! I’m just so excited to have this conversation with you today! And we were just in Durham, at the Aphasia Access Leadership Summit, where you showcased your beautiful city. Thanks for hosting us.
Mary Ann Eller: I'm really excited to be here and very honored that you asked me to do this podcast.
Katie Strong: Well, I'm excited for people to hear about your thoughts. And as we get started, I wondered if you could share a bit about your own speech language pathology journey, and about the hospital setting you work in.
Mary Ann Eller: I grew up in Pittsburgh. I went to the University of Pittsburgh for my undergraduate and graduate degree and then I went to the Shock Trauma Center in Baltimore for my CFY. And that's where I fell in love with acute care, you can't get more acute than that. Then I moved to Durham, North Carolina and I have worked at Duke since 1989, which is 34 years if you're counting. And I started when I was five! It's been a great experience. I've worked mostly in acute care and acute inpatient rehab. When I was new in my career, I loved the excitement of acute care. And I think as I grew older, I fell in love with rehab because I have more personal experiences with being in the hospital and with myself and with my parents. I just saw how important effective communication was at that time in people's lives. And that's what I really want to talk about today.
Katie Strong: Yeah, I'm excited for this conversation. And as we dig in a little deeper, tell me how you became interested in applying the Life Participation Approach to Aphasia (LPAA) to acute care settings.
Mary Ann Eller: Yeah, this is an interesting story to me. At the University of Pittsburgh, Audrey Holland was there at the time. As people who know her and her work, she is known for being extremely functional. So, I sort of grew up professionally knowing that being functional was the way to go. That was in the late 80s, so the LPAA had not been developed yet, which was around the year 2000, I believe when the impairment-based focus of therapy was recognized as not meeting the mark. It wasn't really helping people where they were at. And so, this LPAA not being a therapy approach, but more of an idea. LPAA is a philosophy of treatment, not a specific treatment approach. So, we could still use the treatment approaches that we knew and were evidence-based, but the philosophy of what we are using them for became more widely known in 2000. So, I didn't know about LPAA until about five years ago, even though I was familiar with being functional. So, in my little isolated world, I wasn't doing CEUs on aphasia because I needed to be a generalist. I had, by that time become a manager in the department and needed to stay up to date on swallowing and dysarthria and cognition. So, I wasn't really in the world of aphasia. So, I continued to do impairment-based therapy for a long time.
But I did secret therapy, which I knew is what Audrey would want me to do. And it was, I would do the things that I knew the patient and the family needed me to do but I'd feel a little bit guilty doing it because I knew it wasn't “evidence- based.” And I wasn't doing the, you know, Response Elaboration Training, or whatever it was that I had learned, but I would meet their needs. So when, about five years ago, I went to an Aphasia Access Conference and Audrey was there, and I got to see her again. And she remembered me, which was really an honor. I was validated that the things that I had been doing in just my nature were correct. They were the best thing for the patient. That was really validating. I was always, and I'm saying this for any clinician who's out there listening, to not be afraid. I was afraid that I was doing it wrong. And I had been doing it for many years, had lots of experience, but I didn't want to get around other professionals that were more recognized in the field, because what if I was doing it wrong? Or what if there was a new approach that I didn't know about? And when I got there, it really wasn't that atmosphere at all at Aphasia Access. It was very welcoming, and it was very validating. And I realized that a lot of my instincts were right.
Katie Strong: I love it. So, it's almost like the LPAA shone a light on that secret therapy, and really validated you.
Mary Ann Eller: It sounds so funny that “secret therapy” but it’s really what it felt like. So, I got to bring it out into the open and it was a secret no more.
Katie Strong: Yeah, I love it. Well, I mean, obviously, then you feel like LPAA has value. Do you think LPAA has a role in acute care? And how do the Life Participation Approach Core Values apply to this setting?
Mary Ann Eller: That was a great thing that I had to work out in my brain. Absolutely, it has a role in acute care. What I was learning about LPAA, when I first started learning, was a lot of information for when the clients were further along down the line. So, they were in the community, and they were participating in their goal setting, and they were deciding, “hey, I want to go back to work.” And that's what the speech pathologist was working on. And those things were wonderful, but that's not the setting I was in. So, I started to think about how these Core Values can apply to acute care. The Core Values, I'll read some of them right here, there's five of them. The first Core Value of LPAA is that “the goal is an enhancement of life participation.” So, when you're waking up with a stroke, and aphasia, the life you have to participate in is in a hospital bed. So yes, that applies. Number two, “all those affected by aphasia are entitled to service.” You are entitled to service if you have aphasia, in addition to swallowing and dysphagia services. That's important too, but you are entitled to service if you have aphasia, you don't skip it in acute care. Number three, “both personal and environmental factors are targets of assessment and intervention.” That is a lot of what I do in acute care with LPAA, I am looking into the environment, which includes the nurses and the nursing assistants, and the family, and the call bell, and the bathroom and all of those things that are in the environment. And that is what I am targeting and that's LPAA. Number four, “success is measured by documented life enhancement changes.” It is an enhancement of a person's life, like if they can use a call bell and get to the bathroom. If you've ever been in that situation, that is the most important life-enhancing really, lately. And then number five, “emphasis is placed on availability of services as needed at all stages of life with aphasia.” That includes the beginning, so yes, it absolutely has a place in acute care.
Katie Strong: I love this. I feel like it's preach, you're preaching it girl. You know, it's just, I mean, I think for many, many years, we've thought about, “oh LPAA is just something that you do after you try everything else.” I love hearing you talking about bringing it into acute care just right from the beginning, it’s so important.
Mary Ann Eller: If I could say one more thing, I think the weight of responsibility for setting goals is one of the things that's talked about in LPAA. You want to be partners with the person who has aphasia in goal setting. And of course, you want whatever it is that they want to work on to be the center. However, when you wake up with aphasia and you have no experience with it whatsoever, you can't expect someone with aphasia to be able to set their goals of communication at that moment. So, I think that that's the biggest difference with the approach and thinking of LPAA. In acute care, the responsibility is more so on the clinician and the family to get to know the person and what's important to him and set the goals at that stage. Slowly educating and then giving the responsibility over to them as soon as possible to set the goals.
Katie Strong: Beautiful, beautiful. We talked about it earlier, the importance of being able to communicate effectively in your health care setting. And one consideration for LPAA is that JCAHO, or the Joint Commission has placed a real high value on environments that support patients and having conversations about their health care to understand their health status and engage in their own health care decisions. Could you talk about how LPAA supports the Joint Commission standards on health literacy?
Mary Ann Eller: Yes. And let me just say, for people who aren't familiar with hospitals, the Joint Commission is the regulatory board that comes in once every two or three years, and they tell you whether your hospital can continue to operate or not. So, the standards are very, very important. And I'm going to read you one of the standards that they have, and I think every speech pathologist is probably going to be, as they hear the standard, is going to be like “Well, wait, that's not really happening with my people with aphasia”. And I think that's where a real opportunity lies for us. You, I think, are attaching the standards?
Katie Strong: Yes, I'm going to. I'll put them in the show notes so listeners can check them out and we'll have a link to the standards there.
Mary Ann Eller: Okay, so one of the standards says that patients are expected to receive information about their care so they can make an educated decision, be listened to by their providers, and the hospital is required to identify patient communication needs and provide services to meet them. And so, you think about maybe someone who speaks another language, or maybe someone who is deaf, or someone who is illiterate. And those are all most of the things I think that people think about when they read that standard. But this also includes people with dementia, and people with aphasia, because you have that diagnosis, doesn't mean that you're unable to communicate. It means that you need special supports to be able to communicate and a lot of healthcare providers are not aware that speech pathologists can offer that support. And so, I think that's where a lot of our work lies.
There's a quote that I like to use in my talks, it's by George Bernard Shaw, it says, “the single biggest problem in communication is the illusion that it has taken place.” And think that there are so many boxes that are checked in acute care, like “the nurse provided education on stroke, and how to prevent further strokes.” And they check the box, and they do a great job, I'm not getting down in that. But if you have aphasia, you did not receive that communication, she communicated it to you. I communicated something to you but that doesn't mean that you received it. And people when they have a stroke, or a brain tumor, whatever it has that produced aphasia, you and their families are in a state of shock, so you're not able to absorb the information. So, I think that that is one thing we need to really be cognizant of when we are trying to change the culture of a hospital.
Katie Strong: Absolutely. And I was thinking of some of the materials you sent me to take a look at in preparation for our conversation today like that Joint Commission talking about communication requiring that two-way process of expressive and receptive or receiving and understanding, you know. That information is really important, very important.
Mary Ann Eller: Yeah, yeah, absolutely.
Katie Strong: And I think sometimes too, we know that our clients or our patients that we are working with take more time to be able to understand what's going on with them and their health care.
Mary Ann Eller: Yeah, and a lot of times what we use to make that happen isn't really that complicated. It often involves slowing down, turning off the TV, sitting down at eye level, and stopping periodically to say, “did you get that?” and “repeat that back to me.” And that's for everybody, not just people with aphasia. It seems like it should be common sense, but it's really not. People in hospitals, especially in the last three years, have been under a lot of pressure and have to do a lot of things. And so, communication can often get lost.
Katie Strong: Absolutely. All this sounds great Mary Ann, but what do you think might prevent some SLPs from embracing LPAA framework in acute care settings?
Mary Ann Eller: That's such a good question because I went through that for 20-30 years, I guess. I didn't embrace it because I didn't know about it. I think that one of the biggest things is being at the Aphasia Access Conferences. I loved it and I loved having the honor of presenting last time we had it, but I just thought, “gosh, I want this to get to people who don't know about it.” Because there are tons of clinicians who maybe hear about it in grad school and perhaps, they go out to their placements and the supervisors maybe don't know about it. And so, they don't put it into practice, or they don't know exactly how to integrate it into practice. I think that number one, that's the biggest thing that's going to prevent clinicians from using it is because they don't know about it.
I think the other thing is that the “secret therapy” that I talked about is realizing, and if nobody's given you this permission slip, I am giving it to every clinician out there. Here is your verbal permission slip, please treat the communication elephant in the room. Whatever it is with somebody in acute care. If they are struggling to order a meal, if they are struggling to call the nurse, if they're struggling with telling you something or talking to the person beside the bed, that's what you work on. Work on what is right in front of you. You don't have to complete an entire Western Aphasia Battery. You don't have to make sure that you have them name 10 things. Those things all have a place, and I think we can fit evaluation and treatment in, but please deal with the person who's right in front of you, not the agenda that you brought into the room. So, there's your permission slip. I think people don't know how to document it and that's okay. I have a couple suggestions a little bit later when I talk about that. I think they feel it takes too much time and it really doesn't, I think you can do these things instead of the big agenda that you brought into the room. I think these people are going to be dealing with aphasia for a long time. And so, they will get to a speech pathologist who will do the more standard evidence-based treatments when they're appropriate. I'm not saying they're never appropriate, sometimes they are. But in my experience of 34 years, a person in acute care with aphasia needs a ton of education, a ton of successes, and just a lot of validation that here's your recovery process, here's what's going to happen. They are in shock, and they don't know how to deal with things, and I think we are the ones who are speaking to that. Everybody else has their silo that they're speaking about with their blood pressure and their arm and their leg and all of these things. But communication is the soul of a person and I think reassuring those sorts of things and giving them successes at that stage is really vital. So yes, that's your permission slip.
Katie Strong: Yeah, yeah, received. And we're going to make lots of copies of that permission slip and mail them out to everybody. So, you touched on this a little bit, but we'd love to hear some ideas that you have about how to incorporate LPAA principles into acute care.
Mary Ann Eller: Here are some practical things. Honeycomb Speech Therapy is a great service that sent out or made available some free checklists for different settings. I downloaded one of those and so that's a good place to start. So, there's, I'm looking at it now, the Functional Needs Checklists by Setting and looking through using call light, using the menu, asking medical questions, and following safety precautions. I think as a clinician, starting to think through your aphasic patients in acute care by communication need versus impairment.
The other thing I'll say that's a really good way to incorporate this is whatever templates you're using in your electronic medical record. The way that we have done ours in the past has been by impairment because that's how we're trained. “How can you talk?” “How can you comprehend?” “How can you read?” “How can you write?” And in our brains we're pulling it together and we're knowing how this might affect their ability to use the call bell. But I think using a table or a checklist that automatically makes you have to pull it together and give a set of supports that will enable the person to do that or not, depending on how severe they are, is one way to make sure that that you incorporate LPAA.
Katie Strong: I love that. And I love the shout out to Honeycomb and Sarah Baar. We actually had her on the podcast. It's been a couple of years, but I think it's Episode 57 if listeners want to check out a little bit more of hearing her thoughts. But I agree, helping yourself be a little more strategic about how you're going to address all of these areas. Because, as you said earlier time is I mean, time is essential everywhere but in acute care, it's really the big commodity.
Mary Ann Eller: Yup. Another thing is to welcome interruptions because when you’re in acute care you will be interrupted. And the nurse will come in to give meds and I think to go into a patient's room open for whatever happens. So that when the nurse comes in and gives meds, you are demonstrating some supported communication techniques. So maybe you always have a pad of paper and a pen or a whiteboard. And so, you write down the medicine, and then you ask the nurse, “what's the medicine for?” and they say, “blood pressure,” and then you write down blood pressure, you show it to the patient, and they nod. And then they have experienced what JCAHO was asking us to do, which is communicating what's happening to them. And not only has that happened, but you also are educating the nurse to see how successful that communication is when you write down a word, for example. Welcome the interruptions to show communication.
I've had doctors come in and explain what's going to happen next for their discharge and I write that down or slow it down or whatever the support needed is. Same with social work. There are so many opportunities to use functional communication and LPAA in acute care. As I was thinking through this question, one of the most effective ways that I remember using it in my recent past is with a patient that had Wernicke's aphasia. And it was at the height of COVID, so everybody had masks on, including her. And she was very, very fluent, and she could not understand spoken language, I mean, lots of it. She could walk, you know, and that made all the more frustrating for her, they'd say, “you can't walk by yourself, you need to sit down.” Well, she didn't understand what they were saying. So, she might say in return, “fine, how are you?” And so, people thought that she was crazy. She was not crazy, she had Wernicke’s aphasia. She did not understand spoken language. And so, when we finally got the consult after the woman was put in a Posey Bed, I was able to tease that out. I was able to educate the staff on “hey, if you do X, Y, and Z,” which included writing down what you're saying, a key word, then she can look at it, she can look at the context, and she can follow your directions. And it was the biggest difference. I mean, speech pathologists really do a great service for people with aphasia in acute care. So, those are just a couple of things that I thought of.
Katie Strong: I love it. I love it. Well, you alluded to it earlier, but I'm going to invite it back into the room now. That is the elephant in the room, hello dysphagia. How does an acute care SLP balance the needs of the patient with dysphagia and also support communication issues as well?
Mary Ann Eller: That is a good question, and I don't find it difficult at all to do that. And the reason I don't find it difficult is because I've embraced some messiness in my evaluations.
Katie Strong: Tell me more!
Mary Ann Eller: And sometimes that's hard to do, especially early in your career. Or if you are a very focused kind of Type A organized person, which a lot of speech pathologists are and that's why we're so good at our jobs. But it is a little bit messy. And what I mean by that is, you can easily do both at the same time. You can evaluate dysphagia and you can evaluate their language. You can have them following commands with your clinical swallow even though you're not saying hold up two fingers and point to the window or whatever you were taught. You can say, “hey, would you pick up that glass of water?” without pointing to it and see if they do it. You can ask them open-ended questions and closed-ended questions to see what kind of language they have. While you are writing your recommendations on the whiteboard, you can have them read it back and assess their reading in that way. There's lots of things that you can do to assess both at the same time. So, it really doesn't take that much more time, it just takes a difference in how you think about it.
Katie Strong: Powerful stuff. Yeah. I love that it's not, doesn't have to be mutually exclusive, and couldn't and shouldn't be. I'm sure our listeners would be interested in exploring some of the resources that influenced your thinking about this topic of LPAA. Would you be willing to share a few?
Mary Ann Eller: So, one that I read 8 or 10 years ago was by Lyn Turkstra. And I talked with her about this at a conference once and it was really interesting. It's on Inpatient Cognitive Rehab, Time for a Change. I can't remember the year that she published it.
Katie Strong: I think I’ve got it here, it's 2013. And listeners we’ll have all these resources in the show notes for you, too. But yeah, it's a 2013 publication.
Mary Ann Eller: I talked with her about it at a conference once and she said that she really kind of had a hard time getting it published because it was so against the grain at the time. And basically, what it was is inpatient rehab, for those of you who don't know, is after acute care oftentimes. So, it may be within a week of having a stroke and maybe you stay for two weeks at this point. So, within the first month of having a stroke and having aphasia. So, Lyn Turkstra’s thinking was, we're programmed and taught to do things in a world of rehab that used to be months long and now it's only a couple of weeks and now earlier than it used to be. So hey, why don't we focus on some other things like education and laying the foundation and making sure that there's a therapeutic alliance with speech therapy so that the person knows, you know, down the line, this is the person you're going to go to and have a good experience with that. That was the first paper that got me thinking.
And then after I started going to the Aphasia Access a few years ago, I looked up an old paper of Audrey Holland’s that was Early Aphasia Management and Acute Care. And that was in 2001 that she wrote that. That talks about a lot of the same things, is that we don't have to do an entire Western Aphasia Battery, but let's take care of their actual needs in acute care.
I loved Roberta Elman’s CAPE checklist and I felt kind of dumb when I went to Aphasia Access and I started asking people, “hey, I'm in acute care, and I'm thinking about XYZ.” And they said, “oh, well, that's what CAPE does.” And I was like, “what's CAPE?” I just didn't know. And CAPE stands for, it's a checklist of four interventions, C is connect with the person with aphasia, A is augmentative communication, P is partner training, and E is education and resources. Basically, it's if you do these four things in the very early stages, then you've got your bases covered. And it's like, Oh, that's awesome. I wish I would have thought of that. I'm just glad she did.
Katie Strong: Before you move forward, I just want to say thank you for being so open about feeling uncomfortable that you didn't know things. And I guess from my aspect, I think it’s also for maybe listeners who are not practitioners but are researchers putting frameworks out there. We really need to be better at getting our work out to the people who can implement it, you know? So, I mean, I think it takes both sides of things to really get it. You can have beautiful, evidence-based work but if it doesn't get into the hands of the practitioners who are using it, it just doesn't matter. So, thank you for being so open about that and I hope that, I'm thinking that it probably resonates with a lot of the listeners here too. That you know, we don't always know what we don't know.
Mary Ann Eller: Yeah, yeah. Thank you for that. You know, it's funny, because even yesterday, I have a lady who has been in the rehab unit for a really long time, for a variety of reasons. But she has pretty severe aphasia, and I was looking over these notes for this conversation today and I realized as I went through the CAPE that I didn't provide her with any educational resources. It’s like, wait a minute, I didn't do this. And it's just, you get caught up in the day-to-day things, even if you're invited to do a podcast about it. And sometimes it's just one of those things. Nobody's perfect. But I think if we can have some standards in front of us and go back to them, that we're going to do a great job, that the frameworks are out there. And I guess the other paper I wanted to mention was also by Roberta Elman it’s, “Are we missing the forest for the trees?” and I love that.
Katie Strong: It’s a great title.
Mary Ann Eller: Yeah. It was like, okay, we're doing all this stuff for aphasia but the person can't communicate when they get home. And I really, really liked that stark reality and I looked back on a lot of my patients, and I'm like, “ wow, I did a great job while they were in rehab.” But I wonder how they're doing at home because I didn't really work with her husband that much. And that is a failure on my part. And, you know, we do better the next time. But those are the things that really influenced how I thought about this.
Katie Strong: Fantastic. Well, we'll make sure to have links to all of those articles and resources in the show notes. Mary Ann, you've been thinking about applying LPAA in your acute care work for a while now. Do you have any ideas that you could share with us that you have in the works in your own practice?
Mary Ann Eller: Yeah, I have a couple. Well, one of the things that I did and it's a very specific intervention, is I developed a Picture Menu because I was doing a lot of work with dementia care and nutrition because of an initiative in our hospital with geriatric care. And dementia is a place where nutrition is often overlooked because they're usually in acute care because maybe they fell or lots of reasons. And the tray ends up getting put in front of them but because of their dementia, they don't eat it and then they start getting sicker and sicker. So, because of that, I realized, even if they could eat, they might not want the tuna fish sandwich that's in front of them, because that's the standard tray that you get if you don't order your meals. And they don't order their meals because they can't communicate. You know, it's not just dementia, it's people with aphasia. And our menus were extremely word based. They were great but they had a lot of words to them. And if you can't read it for a variety of reasons, maybe you're blind, maybe you speak a different language, maybe you're illiterate, all different reasons. Then the person comes up to your bed and takes a really great bedside order like a waitress on an iPad, but again, all words. I teamed up with some people at my hospital and we went down to the kitchen, and we took pictures of all the items on the menu, and we put it on a big giant, laminated menu that we bring to the bedside and have them point to it. So yeah, and I've trained the patient menu techs, the people who actually take the orders, to use it. So, it's a work in progress because it's an extra step but yeah, it's really useful for the people that can use it. So, that's one thing.
The other thing is the idea that I had, and it is not flushed out at all. I'm just gonna like put it out there and if somebody wants to steal it and do it before I do, feel free. But in my hospital, which is Duke Regional Hospital, it's part of the Duke System, but it's a smaller community hospital made up of about 380 beds. A couple of brilliant speech pathologists teamed up, and developed a trach team. And the trach team consisted of a pulmonologist and a respiratory therapist and a PT and an OT and the main players that revolve around trachs. And through a lot of hard work, they were able to do some culture change and practice change and get these patients with trachs taken care of through weekly rounding and all sorts of focus changes. And I thought, why can’t we do that for people with aphasia? Or communication, just have a communication team? And I don't know what it's going to look like yet but why can't we get the players? I mean, maybe it's just the speech pathologist. But identify in my hospital through speech pathology consults, okay, here are the most vulnerable people to not get their needs met in acute care because they have global aphasia or severe dementia and they're on our caseload. Let's put them on a special list and let's give them special attention in some way and have a communication team. And as you round on these patients, you let the rest of the hospital see you doing this. You let them see how to intervene with these people. And it catches on so that they then learn these techniques, whatever they may be. We act as advocates for these people that are particularly vulnerable. Again, I don't know how it's going to work yet, but that's an idea.
Katie Strong: Yeah, I love it. And I would love to hear how it unfolds, so.
Mary Ann Eller: Me too.
Katie Strong: Yeah. Okay. I'd like to take it a little bit further because you're the manager of a department, right? So, talk about maybe a few tips in transitioning to an LPAA focus with a staff that isn't particularly familiar with that philosophy.
Mary Ann Eller: That is a really great question, and there’s not one answer. And I'd love to bring in your friend, Natalie Douglas, in implementation science to speak on this. I'll tell you what I did and then I'll tell you what a bigger department might do. I have myself and five full-time speech pathologists, We all have varying levels of familiarity with LPAA and we all have been practicing in some form or fashion. So, I did an anonymous survey, and I asked some questions like, “how comfortable are you seeing people with aphasia?”, “have you ever heard of LPAA?”, “how comfortable are you using supported communication techniques?” And I did it anonymously because everybody is not going to want anybody else to know that they're not comfortable with it. So, even if there's just one person on my team who doesn't know LPAA or who isn't comfortable, I don't know who it is, I have an idea, maybe. But I'm going to put it in front of everybody and say, “hey, there's one person on our team who's not comfortable, let's focus on this.” And so that's what I did. My team is fantastic and they are very open.
And so that's what we did. We had some focus teaching on it we watched some of the Aphasia Access videos on supported communication and LPAA. And then we changed our templates to include some tables that I talked about before that have the checklists on them. I think though, and I had a conversation last night with Kim Irby who is the interim chief over at ‘Big’ Duke who has like, I don't know, 40 or 50, speech pathologists. And I asked her, I said, “what have you used with bigger departments?” And she had a really good point, she's like, “you know, education alone is not enough, it’s not going to produce a behavior change. People are going to think their behavior is changing and they're going to think, through doing LPAA, and they might be. But really, you have to have people be able to be in the moment with a coach and do it together.” That can be tricky. I mean, you've got people with varying levels of comfort, varying egos, varying all sorts of things. And so, she and I thought, you know, I think probably the most practical way would be to educate and then pair people up together as peers and see a person with aphasia. Try things together then come back and let’s all talk about it. It's not, “hey, I'm going to go with you as your boss and make sure you're doing this right.” That would be like totally not cool. So, I don't know, again, I want Natalie to tell me how to implement this.
Katie Strong: We all want Natalie to tell us what to do, for sure. But I love this idea of learning together, right? That you're not imposing “this is what you have to do.” But really, you know, because I do think that the LPAA approach takes your own style...Each person delivers it in a different way, right? And it's different with each patient that you're with because it's personalized.
Mary Ann Eller: Absolutely. And you can’t teach that. It’s not an agenda, it’s
an attitude and an openness, armed with the goals that you have, and armed with the core values of LPAA.
Katie Strong: Yeah, I do really love and thinking back to the Turkstra article you were talking about and just that importance of therapeutic alliance with our discipline, right? So that then later on, they think about speech pathology as a positive resource to help. Beautiful. Okay, Mary Ann, as we wrap up, do you have any final thoughts you'd like to share with our listeners?
Mary Ann Eller: I want them to remember the permission slip I gave them. I didn't give it to them, Audrey Holland gave it to them in 1989. Okay. And we're carrying it forward and there is a permission slip to work on the communication elephant in the room. Whatever it is, that is your goal. I think, I guess in my mind, early aphasia intervention should be guided by the person with aphasia’s need in the moment first, then the bigger picture. I go in with a really, really loose agenda and I'm open to anything. I welcome interruptions and struggles and I think that that is the messiness and the creativity and the joy of using LPAA in acute care.
I've been a patient in the bed for health reasons and I've sat next to my parents in the bed. I think that once you do that you realize how not only practical but necessary it is that we change our focus on communication at this stage of recovery. Because you don't care what the doctor knows, you care that the doctor cares and can explain it to you in a way that you can make your decisions. And that's the power we have. We've all had health care workers and seen them who have been outstanding and who have been terrible. I think we obviously want to be outstanding. And it doesn't take a lot to be outstanding when you know what your job is, which is to help the person with aphasia to communicate and to be understood in whatever supported techniques that we have and that is our job. And I think that is an amazing privilege. Really, I look at it as a privilege. We are inserting ourselves into a person's worst day and we are the person that walks in there and has the power to help them do two of the most important things, eat and communicate.
Katie Strong: I agree.
Mary Ann Eller: So, I think that those are pretty powerful and I think that it's a real privilege to be able to do that.
Katie Strong: Thank you, thank you. I feel like you've just given us some gold that we need to really admire and take out and show off. Right? That we need to let all of it shine and really take these important pieces about changing our practice in acute care. And really helping people be able to understand and have conversations about their health care so they can participate in really important conversations that impact their life.
Mary Ann Eller: I hope so, I hope so. And I'm not a researcher, I have not done papers and you know, all of those kinds of things. And I used to feel a little bit intimidated by that. It's like, well, do I really have anything to say? And I realized as time goes on, it's like, yes, absolutely. And I want to really reach out to the clinicians that are listening to this. Please use your voice. Please reach out for partners. If you hear somebody at a conference or you reach out to me if you want to, if you're listening to this. Just grow your knowledge and grow your ability to this great job that we have.
Katie Strong: Thanks for a real, practical and inspirational conversation.
Mary Ann Eller: Well, thank you for letting me have it.
Katie Strong: Thanks, Mary Ann.
On behalf of Aphasia Access, we thank you for listening to this episode of Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to check out our growing library of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.
Guest Contact Information
Email Mary Ann at [email protected]
Resources
Aphasia Access LPAA Training Videos (LPAA 101, LPAA, Core Value, Communication Access- Fundamental Techniques) https://www.aphasiaaccess.org/videos/
Chapey, R., Duchan, J. F., Elman, R. J., Garcia, L. J., Kagan, A., Lyon, J. G., & Simmons-Mackie, N. (2000). Life Participation Approach to Aphasia: A statement of values for the future. ASHA Leader, 5(3). https://leader.pubs.asha.org/doi/10.1044/leader.FTR.05032000.4
Elman, R. J. (2014). Aphasia intervention: Are we missing the forest through the trees? 44th Clinical Aphasiology Conference, St. Simons Island, GA. http://aphasiology.pitt.edu/2529/
Elman, R. J. (2020). C.A.P.E.: A checklist of four essential and evidence-based categories for aphasia intervention. Chapter 2. In A. L. Holland & R. J. Elman (Eds.) Neurogenic communication disorders and the Life Participation Approach: The social imperative in supporting individuals and families (pp. 21-52) Plural Publishing.
Holland, A. & Fridriksson, J. (2001). Aphasia management during the early phases of recovery following stroke. American Journal of Speech-Language Pathology, 10(1), 19-28.https://doi.org/10.1044/1058-0360(2001/004)
The Joint Commission: Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals. Oakbrook Terrace, IL: The Joint Commission, 2010.
Turkstra, J. S. (2013). Inpatient cognitive rehabilitation: Is it time for a change? Journal of Head Trauma Rehabilitation, 28(4), 332-336. https://doi.org/10.1097/htr.0b013e31828b4f3f
If you liked this episode – more listening…
Additional Aphasia Access Conversations Podcast episodes relating to the topic of acute care and applying LPAA to different settings.
Episode #57 Patient-Centered Home Programs Across the Continuum of Care for Individuals with Aphasia: A Conversation with Sarah Baar.
Episode#99 Communication Partner Training for Health Care Professionals with Dr. Jytte Isaksen
Episode #38 Broadening the Role of the SLP in Acute Care Assessment: A Conversation with Robyn O’Halloran
Acknowledgements – A special thank you to Amanda Zalucki from the Strong Story Lab at Central Michigan University for their assistance in the transcription of this episode.
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