Aphasia Access Conversations

Aphasia Access Conversations brings you the latest aphasia resources, tips, and a-ha moments from Life Participation professionals who deliver way more than stroke and aphasia facts. Topics include aphasia group treatment ideas, communication access strategies, plus ways to grow awareness and funds for your group aphasia therapy program. This podcast is produced by Aphasia Access. Search our courses, resources, and events by keywords at https://bit.ly/aphaccacademy.

Episode #116: Understanding Auditory Comprehension with Janet Patterson 04/23/2024

Episode #115. Next STEPS: In Conversation with Professor Ian Kneebone 04/09/2024

Episode #115. Next STEPS: In Conversation with Professor Ian Kneebone 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.... /episode/index/show/aphasiaaccess/id/30746703

Episode #114: Creating Equitable Aphasia Services with Dr. Teresa Gray 02/06/2024

Episode #114: Creating Equitable Aphasia Services with Dr. Teresa Gray 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... /episode/index/show/aphasiaaccess/id/29827623

Episode #113: Adapting the A-FROM to Dysphagia to Guide Whole-Person Care: A Conversation with Theresa Yao and Jocelen Hamilton 01/02/2024

Episode #113: Adapting the A-FROM to Dysphagia to Guide Whole-Person Care: A Conversation with Theresa Yao and Jocelen Hamilton 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 notes Show 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... /episode/index/show/aphasiaaccess/id/29305653

Episode #112: Aphasia 3D: In conversation with Dr. Assunção (Maria) Matos and Paula Valente 11/22/2023

Episode #112: Aphasia 3D: In conversation with Dr. Assunção (Maria) Matos and Paula Valente 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... /episode/index/show/aphasiaaccess/id/28757373

Episode #111: Sharing Strategies to Successfully Support Reading for Individuals with Aphasia: A Conversation with Kelly Knollman-Porter 11/07/2023

Episode #111: Sharing Strategies to Successfully Support Reading for Individuals with Aphasia: A Conversation with Kelly Knollman-Porter 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... /episode/index/show/aphasiaaccess/id/28527392

Episode #110: Putting family at the center of care from parents with aphasia to PPA: In conversation with Lauren Schwabish 10/19/2023

Episode #110: Putting family at the center of care from parents with aphasia to PPA: In conversation with Lauren Schwabish 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 families Interview 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... /episode/index/show/aphasiaaccess/id/28368608

Episode #109: Learning from Family and Systemic Psychotherapy with Kate Meredith 07/25/2023

Episode #109: Learning from Family and Systemic Psychotherapy with Kate Meredith 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... /episode/index/show/aphasiaaccess/id/27549480

Episode #108: Supporting Quality of Life through Biographic-narrative Therapy: A Conversation with Sabine Corsten 07/11/2023

Episode #108: Supporting Quality of Life through Biographic-narrative Therapy: A Conversation with Sabine Corsten 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... /episode/index/show/aphasiaaccess/id/27355614

Episode #107: “Black Americans Talking About Us” with Michael Obel-Omia, Donald Cunnigen, Denise Mendez, and Roy Hamilton 06/27/2023

Episode #107: “Black Americans Talking About Us” with Michael Obel-Omia, Donald Cunnigen, Denise Mendez, and Roy Hamilton “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: by Michael Obel-Omia (Boston Globe article about disability and race) by Michael Obel-Omia (book) (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 Twitter: 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 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: Twitter: Podcast: Additional Notes: 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... /episode/index/show/aphasiaaccess/id/27289011

Episode #106: Prioritizing Life Participation for Individuals with Mild Cognitive Impairment: In Conversation with Dr. Alyssa Lanzi 06/13/2023

Episode #106: Prioritizing Life Participation for Individuals with Mild Cognitive Impairment: In Conversation with Dr. Alyssa Lanzi 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... /episode/index/show/aphasiaaccess/id/27402441

Episode #105: Your Permission Slip to Do Secret Therapy in Conversation with Mary Ann Eller 05/30/2023

Episode #105: Your Permission Slip to Do Secret Therapy in Conversation with Mary Ann Eller 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... /episode/index/show/aphasiaaccess/id/26911182

Episode #104: From fringe to mainstream - Stress and integrative health in aphasia: A Conversation with Jacqueline Laures-Gore 05/18/2023

Episode #104: From fringe to mainstream - Stress and integrative health in aphasia: A Conversation with Jacqueline Laures-Gore Welcome to this edition of Aphasia Access Aphasia Conversations Podcast. 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 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 today's host for today’s episode that will feature Dr. Jacqueline Laures-Gore. These Show Notes accompany the conversation with Dr. Laures-Gore but are not a verbatim transcript. Dr. Jacqueline Laures-Gore Dr. Laures-Gore is a professor in the Department of Communication Sciences and Disorders at Georgia State University in Atlanta, where she directs the Aphasia and Motor Speech Disorders Laboratory. Jacqueline's work spans topics in aphasia and motor speech disorders. For the past several years she has investigated the relationship between integrative health practices and aphasia rehabilitation. In today’s episode with Dr. Laures-Gore you will hear about: the relationship among stress, resilience, and coping skills, recognizing and measuring physiological stress and perceived, self-reported stress, the interaction of stress, anxiety, and fear, and the role integrative health practices can have in daily life and in aphasia rehabilitation. Dr. Janet Patterson: Welcome to this edition of Aphasia Access Conversations. Today I am delighted to be speaking with my friend and colleague, Dr. Jacqueline Laures-Gore. Jacqueline is a professor in the Department of Communication Sciences and Disorders at Georgia State University in Atlanta, where she directs the Aphasia and Motor Speech Disorders Laboratory. Jacqueline's work spans topics in aphasia and motor speech disorders, including investigating working memory in persons with aphasia. In motor speech disorders, she and colleagues examined topics such as intelligibility in people who have dysarthria, and speaker and listener perceptions of speech in persons with dysarthria. She is a co-creator of the Atlanta Motor Speech Disorders Corpus, which is a comprehensive spoken language dataset from speakers with motor speech disorders in Atlanta, Georgia. This collaborative project gathered speech samples from non-mainstream, American English speakers residing in the southeastern United States in order to provide a more diverse perspective of motor speech disorders. For over two decades, Jacqueline has been interested in how personal, physiological, and psychological factors affect people with aphasia, and aphasia rehabilitation. She has investigated topics such as stress, depression, mental health concerns, and how to assess their presence and influence. With her colleague, Ken Rice, she recently published the Simple Aphasia Stress Scale in the Journal of Speech, Language, and Hearing Research. The SASS is a single item self-report measure of acute stress in adults with aphasia. Dr. Laures-Gore’s work also investigated the power of laughter, mindfulness, meditation, spirituality, yoga, and integrative health practices for persons with aphasia. I am pleased to welcome Jacqueline to Aphasia Access Conversations today and look forward to talking with her about her clinical and research experience considering how integrative medicine can influence a person with aphasia and their rehabilitation, and the powerful effects that mindfulness, laughter, and yoga can have on life outlook, participation, and rehabilitation. Welcome, Jacqueline. I appreciate your time today in talking with me about these fascinating and important topics. Dr. Jaqueline Laures-Gore: I am very happy to be here, Janet, and very honored. I look forward to a very lively and fun conversation with you today. Janet: Jacqueline I would like to start by asking you about the aspect of your aphasia research interests that includes important topics such as depression in persons with aphasia, stress, laughter, and spirituality. In fact, I believe you are among the first to write about the value of integrated health practice in aphasia. How did your career path and learning curve about aphasia take you to this line of inquiry? Jacqueline: There's quite a bit of time that I spent with people with aphasia through my clinical work, and even early on before I became a speech-language pathologist and worked in a geriatric setting. There was a gentleman there who had aphasia and we did not really know how to communicate with him. He was very isolated. He sat by himself most of the time, was very alone. That image of him and what he must have been experiencing, and our inability to really know how to communicate with him, stuck with me over the years and definitely drove me toward a career in speech-language pathology, and specifically working with people with aphasia. Then, after becoming a speech-language pathologist, and working full time in rehab settings, it became very obvious that people with aphasia were more than the problems with phonology and semantics, and so forth. There was a bigger picture here, and there was oftentimes frustration. I watched and tried to provide some help to reduce frustration during some of the language tasks that people would be doing in clinic. But as I tried to look in the literature about well, what do we know about this frustration? What do we know about stress and the language system? What do we know about ways to facilitate language through the stress mechanism? What do we know about relaxation, and its effect on language, and so forth. All of those things really seem very under-explored in our aphasia literature. My curiosity definitely drove me to looking then, into a Ph.D., and having some great mentors who encouraged me to continue down this path of the fringe group. There weren't a lot of people who were very interested at the time in stress and thinking about what happens with the language system, or of mindfulness, meditation, and so forth. By far, I'm not the first to consider these things. McNeil and Prescott had a meditation paper, I think it was back in the 1970s. Cynthia Thompson had a paper on hypnosis, I think it was in the 1980s. There have been others, too. Janet: I'm listening to you and thinking, we probably all had some sort of thoughts about this, as we see patients. I'm envisioning the patient that you saw in the geriatric center, we probably all have had patients like that. I'm impressed that you didn't forget, that you kept that in your mind as you moved forward. I think many of us didn't know what to do with it, didn't know how to think about this. Other things present themselves and we get busy with our worlds and our learning about phonology, or semantics, or syntax. It's hard to remember. I'm glad that you remembered and also, that you were brave enough to stay out there on that fringe, because not everybody is that brave. Jacqueline: Oh, it's hard! It has been hard. It's gotten easier now, and hopefully, it will be easier for the next generation of researchers on this topic. Definitely my longtime collaborator, Rebecca Shisler Marshall, and I had difficulty getting things published. Thinking too, about research design, and approaching the topic with this particular group of individuals with communication disorders, it's a unique population. There's still a lot of growth regarding research design and establishing clinical trials, and we're just at the early phase of really investigating this. I love that you were pointing out that oftentimes people forget that first person that they encounter with a specific communication disorder, and in this case with aphasia. I was 17, and I'm a few years older than 17 now, but I think, though, that for some individuals, there's a catalyst. It could be a personal experience, I hear lots of times when we have students coming through our program, “Oh, I had a family member who (fill in the blank) and had to have speech therapy”, or “I myself had to have some kind of speech therapy, and that's why I want to do this”. For me, at least, it was this individual that I was tasked to care for, and not really knowing how to care for that person. Definitely an emotional component there, and a feeling of responsibility. Janet: I have visions of some of my patients when I was first starting out, boy do I wish I could have a do over! Jacqueline: Oh yeah, obviously, I hear you. Janet: This leads me to my next question. Your research has investigated some of the challenges that all of us, including persons with aphasia, experience such as depression or stress or mental health concerns, or coping with life's challenges, whether they're small challenges or large challenges. These words and concepts, I think they appear commonly in our conversations, and while people may believe they understand their definitions at a broad level, I believe that that may not be the case when we consider them in the context of treating our clients who have aphasia. How do you think about these concepts as they relate to persons with aphasia and their family members? And to our treatment programs? Could you give us some sort of guidance about how we might define and use these terms in our clinical work? Jacqueline: Let's start with stress. Something that I have been talking a lot about lately, and especially with my doctoral student right now, is defining stress, defining anxiety, defining fear, and the differences between those three. When we think about stress, stress is really that threat in the moment. There are different ways in which we respond to that in-the-moment threat. One way is physiologic, and we have two biological arms of the physiologic stress response. One is the sympathetic adrenal medullary system, and the other is the hypothalamic pituitary adrenal axis. The first one, the sympathetic one, or the SAM, shows up with our heart rate and sweating, changes in our digestive system, and pupil dilation. The other one, the hypothalamic pituitary adrenal axis, that one will show up more with the changes in ACTH [adrenocorticotropic hormone] and downstream cortisol. All of those, though, have different effects on our body, and we can measure them with different techniques. The physiologic stress response is adaptive, and stress is not always a bad thing. From an evolutionary perspective, having that stress response has been very beneficial for us, as humans. Now, when that stress response is consistently engaged, then it becomes problematic and oftentimes can become some type of illness or disease. In the short term in helps us to adapt to a potentially negative situation. The other stress is more of a perceived stress. Perceived stress is the perception that there is a stressor, there is something in my environment that is creating this feeling of dis-ease. That perception of stress is reliant also on whether you feel you have, or you have coping resources. Do you have the support around you to help you deal with this stressor? For instance, do you have the financial means to help yourself, and some people rely on religious practices or spiritual practices to help them cope. Anyway, so we have that self-perception of stress, and then we also have the physiologic stress, and the two do not have to match. Oftentimes, we can have somebody who reports themselves as perceiving stress and having a high level of perceived stress, but physiologically, it's not showing up. That makes it always a little bit tougher to study stress, and clinically to even assess stress. I'm not sure which is more important. Is it more important to not be perceiving stress? Or is it more important not to be feeling stress physiologically? I don't have the answer to that. One of the things that's very exciting clinically though, is that there are more wearables now that can detect changes in heart rate, changes in skin conductance or skin response. I think that is going to be helpful eventually for clinicians who are trying to determine how stressful a certain situation is as far as a language task or a communication task. We're also seeing more self-report measures of stress. We have the SASS, as you had mentioned, which is an acute measure. It's just one question and it's on a scale. Rebecca Hunting Pompon and colleagues created the Modified Perceived Stress Scale, which looks at stress over the last month, more of a chronic stress assessment. You'd mentioned depression. We're seeing a lot more work in post stroke depression in people with aphasia in the last ten years or so. With that attention to the mental health of people with aphasia, we're seeing more scales that are at least being looked at, to help measure depression in people with aphasia, whether it be modifications of stroke depression scales that are already there but for the general population, or specific to people with aphasia. I see those as becoming more accessible clinically and us figuring out more about what we can be using in the clinic to look at depression. Janet: This is fascinating, and I would love to spend hours talking with you in more detail about some of these measures. In preparing to talk with you, I did a literature search of some of these terms like stress or depression, as they are linked with aphasia. I noticed that there were a few papers on the topic 30 or more years ago, but not many. In the last decade or so, as you mentioned, there has been an increasing number of papers that describe something about stress or depression, or how to measure it, or what to do about it. I think that this is a good trend, and it's certainly consistent with LPAA principles that seek to maximize the life experience of persons with aphasia. That said, I was challenged to draw consistent conclusions from the evidence that I saw. I'm wondering if you could summarize some of the findings from your research and experience and help us place this work in the greater context of evidence informed practice for aphasia. Jacqueline: We know more about depression and functional outcomes, how post stroke depression can have a negative effect on functional outcomes in persons with aphasia. The problem is that the amount of literature is fairly small. Primarily, it's because that in the past, people with aphasia have been excluded from some of those studies. I see that changing now, where there is more inclusion of persons with aphasia. Then when it comes to stress, that literature is really, really just beginning, as far as empirical data to direct clinical care. In my work, what I've been able to show is that there are definitely some correlations, some associations between self-reported stress, and some aspects of discourse. I've been setting, at least most recently, picture description, for instance, or some type of narrative, and then looking at the discourse production to see if there's any kind of association with different aspects of self-reported stress. We found some things but nothing necessarily consistent. There's been some association with pausing, such as filled pause and unfilled pauses. We've seen that perceived stress can be either negatively or positively associated with those aspects of discourse. I think that right now, the evidence is a little unclear about what the effect of stress is on language. I also always want to tell people that we really need to not always think about stress negatively. We need to think too about stress as an adaptive process. It may be that sometimes stress and language work together very nicely, and stress may give language a little boost. There was a 2019 paper that we had out looking at cortisol awakening response and diurnal variation, and we saw some differences between people with aphasia, and people without stroke and aphasia. The people who did not have a stroke and aphasia had a cortisol awakening response, which is that when we first wake up, the cortisol which is always in our body and is that very endpoint of hypothalamic pituitary adrenal axis, it releases glucose in our system and gives us sugar which gives us energy. For the most part, when people wake up, they have a lower level of cortisol. Then about 30 minutes later it starts peaking and then it continues to climb throughout the day. It's thought that that energy at the early onset of the day gives us a little bit of energy to get us going. In that 2019 paper, we didn't see that people with aphasia were following that pattern. That made us wonder if maybe there's an energy source that isn't fully functioning for people with aphasia, or at least isn't fully engaged in people with aphasia, and that could be contributing to language. There are a lot of things with that paper, too, that left us with more questions than answers. I think that's where we're at as a whole, with stress, with depression, with integrative health practices, is a lot more questions than answers still. I do think that there's a sweet spot that maybe I won't, it will probably be maybe the next generation, I don't know if it'll stick around with my generation, or with me at least, but I'm trying to figure out what that sweet spot is for individuals. How much stress is too much stress, how much stress is just enough stress. Also, there's probably a big component of just inter- and intra-individual variability. What works for me, Janet, may not work for you. I think that's when clinical care really takes on that art piece, too, tuning into the person that you're helping and finding out what works for them. Janet: I think you've said that so, so well. One of my fears is that this larger idea of the work that you're doing, people may see it as a bandwagon to jump on without really understanding the work behind it, the data behind it. So hearing you say, yes, we think there are some effects, but there's not enough evidence yet for us to say exactly what, in what way, for whom, all the time, under what conditions. Also bringing the ideas back into the art of the clinical work to pay attention to your patient, not just the responses that they're making linguistically, but also nonverbally, what they're showing you or telling you. Maybe take a step back to talk about, are they having a moment of stress? Or is something going on in their life that can be affecting their performance today? I think that's a good thing. Let me turn a little bit in a different direction, because in addition to talking about and measuring stress and depression, your work is also focused on behaviors that can benefit all of us. Behaviors or activities such as mindfulness, yogic breathing, meditation, yoga. How did you become convinced that these activities can have a positive effect on a person with aphasia? Jacqueline: Well, I don't know if I'm convinced. I am exploring. Janet: Good point. Jacqueline: It is yeah. I'm not convinced. I think, again, that there are differences between people and so that not everybody has a good experience with yogic breathing, or is it maybe not appropriate for some individuals. Mindfulness can be very beneficial for people who are not necessarily aware of a certain behavior. But at the same time, when one becomes more mindful, there may be other emotions that come up. When you're introducing mindfulness into therapy you have to be aware that there may be some negative parts to introducing that and be prepared for some other emotions that may come up. Stacy Silverman McGuire is a student of mine, and she did a thesis on laughter, yogic laughter. In that paper, we give a little qualitative piece to some of what she had studied and there were some people who just... /episode/index/show/aphasiaaccess/id/26879526

Episode #103: Counseling for People with Primary Progressive Aphasia with Kristin Schaffer Mendez 04/11/2023

Episode #103: Counseling for People with Primary Progressive Aphasia with Kristin Schaffer Mendez 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 Kristin Schaffer Mendez about her work on counseling for people with primary progressive aphasia and their families. Gap Areas This episode focuses on Gap Area #6, insufficient attention to depression and low mood for people with aphasia across the continuum of care. Guest info Dr. Kristin Schaffer Mendez is a speech-language pathologist and assistant professor at the University of St. Augustine in Austin, Texas. Prior to entering academia, she worked in several clinical settings, including inpatient rehabilitation, home health, and private practice. Dr. Mendez’s experience as a clinician has inspired her research, which is centered upon examining and addressing psychosocial factors in acquired neurogenic communication disorders through patient-centered and care partner-inclusive treatment paradigms, including counseling, support groups, and the use of telerehabilitation platforms. Listener Take-aways In today’s episode you will: Learn about some of the psychosocial factors that people with primary progressive aphasia may face. Understand how speech-language pathologists can provide both educational and personal adjustment counseling for people with PPA. Describe a cognitive behavioral approach to personal adjustment counseling for people with PPA. 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 Dr. Kristin Shaffer Mendez. Dr. Schaffer Mendez is a speech language pathologist and assistant professor at the University of St. Augustine in Austin, Texas. Prior to entering academia, she worked in several clinical settings, including inpatient rehabilitation, home health, and private practice. Dr. Schaffer Mendez his experience as a clinician has inspired her research, which is focused on examining and addressing psychosocial factors in acquired neurogenic communication disorders through patient-centered and care partner-inclusive treatment paradigms, including counseling support groups, and the use of telerehabilitation platforms. In this episode, we'll be focusing on her research on counseling for people with primary progressive aphasia. Dr. Kristin Shaffer Mendez, welcome to the Aphasia Access podcast. It's great to have you here. Kristin Shaffer Mendez Thank you so much for having me. It's wonderful to be here. Lyssa Rome So I wanted to get started by asking you a question that we often start with, which is whether you have any “aha” moments, so experiences that were pivotal for you in your work as a clinician or as a researcher? Kristin Shaffer Mendez Yeah, you know, I think throughout my career, there have been a series of “aha” moments. If I think through my career, I've had several different stages. So initially working clinically, as a speech language pathologist, as I was partnering with patients with all different types of communication disorders and their families, I quickly realized that we weren't going to address the specific speech language goals if I didn't first acknowledge and check in with these individuals and get a sense of their general wellbeing, and a sense of if they were suffering, if they were grieving, if they were going through or processing something specific. I did have some didactic training as a student and counseling—not a lot—and I noticed when I would try to find evidence-based resources, I wasn't finding a lot of disorder-specific counseling information. Fast forward a few years later, I was working as a research speech language pathologist at the Aphasia Research and Treatment Lab in Austin, Texas. And I was working primarily with individuals with PPA, and sometimes I would notice, and in the midst of a speech language treatment session, they would say something maybe under their breath, or maybe in frustration, like, “Oh, my dumb brain,” or “ I’m such an idiot.” And I was thinking, oh, goodness, if this is what's coming out of their mouth, I only wonder what what's happening behind the curtain. And if we were to look at the inner workings of their mind, what their self talk would look like, and how critical it might be. Then I was thinking, “Okay, now what what types of tools might I be able to provide for these individuals so that they can minimize that critical voice, and be more positive, be more adaptive.” And so that leads me to to my line of research. Lyssa Rome And that also leads, I think, straight into the gap areas. So in this podcast, we've been highlighting those gap areas that were identified in the State of Aphasia Report by Nina Simmons Mackie, which was published in 2018. And I think, in this episode, what you've described so far, and what we're going to be talking about, really focuses in on gap area number six, which is insufficient attention to depression and low mood for people with aphasia across the continuum of care. You described some of the kinds of self-talk that you were hearing people say. I'm wondering if you could tell us a little bit more about the kinds of psychosocial issues that people with primary progressive aphasia typically experience. And I guess I also wonder if this differs at all from what people with post-stroke aphasia experience? Kristin Shaffer Mendez So individuals with primary progressive aphasia, the psychosocial factors that they're facing can range from feelings of low confidence, to social isolation, withdrawal, reduced participation in life activities to a diagnosis of mood and or anxiety disorder. So similar in many ways to what individuals with stroke-induced aphasia may be facing. But the difference here is that when we look at the prognosis and the trajectory of life for individuals with PPA, in contrast to individuals with stroke-induced aphasia, who can look at a future of improved communication functioning, or maybe an plateau in communication status, for individuals with primary progressive aphasia, their trajectory is that of decline. And so these individuals are at particular risk for facing these psychosocial threats and for these factors to change over time as well. Lyssa Rome So given some of these needs that you've just described and the risks that you've described, how can we as speech language pathologists provide counseling in our treatment for people with PPA? Kristin Shaffer Mendez Yeah, so there's there lots of different avenues that we can go down in terms of providing counseling, and really what I'll say is, this is going to be person-specific, and we'll tailor our counseling to the needs of an individual, session by session. There are two main camps in terms of counseling within our field more broadly, in communication sciences and disorders. And this I follow from Dr. David Luterman, of course, one of the long-standing advocates and pioneers for the integration of counseling in our field. He cites two main forms of counseling. One is informational counseling, otherwise known as psychoeducation, or educational counseling. This is where we're providing disease-related information. And then there's personal adjustment counseling. This is going to be more emotion-centered. This is where we are directly addressing those thoughts, feelings, and behaviors underlying the diagnosis. So I really do believe that we can toggle between the two, and that our patients can and may benefit from both forms of counseling. As a field, research has shown that speech language pathologists tend to feel more comfortable in providing the educational or the informational counseling relative to personal adjustment counseling, and they're also more likely to have been provided with didactic education in that information-centered counseling. But this is this is where my work comes in. And this is where I'm really motivated and invested in in making changes. I'll talk some more about personal adjustment counseling. So this can range from micro-counseling skills, that are more general, and that are those soft skills that will help to foster a strong therapeutic alliance with our patients. So actively listening, listening without having an agenda of what we're going to say next, or thinking about the time and redirecting back to the speech language treatment task. Having moments of therapeutic silence, where again, we're not jumping in to fill empty space, but pausing a beat, and letting the patient continue to talk, or sit for a moment and process. Paying attention to our body language, the nonverbal way that we're communicating, leaning in, nodding, validating, affirming through the way that we are presenting. And then listening to what our patients are saying, and then thoughtfully summarizing. So letting our patients know that they are seen and heard and validated. So those are, those are microcounseling approaches, and we can provide that anytime with any of our patients or our care partners. But then there are also specialized counseling approaches, and that's where my research really delves into further that are going to require more training and a specialized set of skills. But really, in terms of our opportunities to provide counseling that can really be organically woven into our interactions from the very initial assessment throughout treatment, checking in with our patients at the beginning of sessions, at the end of sessions, and just being being aware, being observant, and noticing if there are moments when our patients seem to be undergoing a moment where they want to talk and where we might need to pause. And use that moment as as a teachable counseling opportunity. And not feel as though we need to stringently adhere to our speech language treatment sessions, or that we have to have some formal time in our sessions that’s set aside for counseling. Lyssa Rome It almost sounds like you're describing approaching our treatment sessions with a counseling mindset that sort of is woven throughout. And you alluded to more specialized programs that we can also use. I know you've developed a cognitive behavioral therapy program for people with PPA, and I'm curious about that program, and about why you selected CBT. And maybe if you could define it a little bit? Kristin Shaffer Mendez Absolutely. Yes. So cognitive behavioral therapy, or CBT, is one of the most widely researched and popular forms of psychotherapy. And it trains individuals to examine the connection amongst thoughts, feelings, and behaviors in order to identify, assess, and respond to maladaptive or unhelpful thoughts to optimize mood and behavior more broadly. And also CBT has been modified for individuals with a variety of diagnoses, including those with neurodegenerative disorders, such as Alzheimer's dementia. So when I was considering different psychotherapeutic approaches to adapt, it really seems like CBT could could be a great starting point. There's really limited research in general about adapting counseling approaches for this population. So within this treatment program, there were both opportunities for dedicated counseling, and that counseling closely followed the traditional form of CBT. However, the sessions were oriented towards communication-centered challenges. And so within that, there's opportunities to check in on an individual's mood, and talk through a home practice exercises from the last week, check in on that, and talk through, “Okay, so what what types of communication difficulties came up this week? And then how we should we prioritize our time together? What do we need to work through?” Then working through specific challenges using aphasia-modified CBT approaches and, and then ending with a feedback component as well. So that's basically the gist of a traditional CBT approach, as a CBT session. So there was that component, but also, these sessions were aphasia-modified in that aphasia-friendly written and visual supports were provided as needed to ensure comprehension of these key CBT concepts that could be new new terminology for any individual who's entering a counseling dynamic. We just wanted to make sure that these individuals were provided with that support. But so in addition to the more structured counseling, there were also opportunities organically within the speech-language portion of the treatment sessions, where if an individual was demonstrating frustration or emotional distress, or they were saying statements that were maladaptive in nature, then these were teachable counseling moments where CBT techniques were used within the session. Lyssa Rome So can you tell us a little bit more about the clients goals and also about what you found? Kristin Shaffer Mendez Yes, absolutely. So, first, I want to contextualize this research and mention that it is considered pilot research. So this is early phase, early stage research, where we are looking at answering the question: Is this novel intervention feasible and is it acceptable to patients? So we're obtaining information to see if patients were satisfied by the treatment, if this was feasible for a speech language pathologist to implement. What we're finding with a small cohort of individuals, so we've published one paper in the American Journal of Speech Language Pathology with our very first pilot participants, that was just a single case experimental design. We have nine additional individuals, three per PPA variant, who have participated in our second phase of pilot research and we have a manuscript in preparation for that stage. But what we're finding today is that this intervention is acceptable. And it's it's feasible. We were also really intentional in selecting and recruiting and enrolling individuals who did endorse that, in light of their PPA, of their communication challenges, that they were facing threats to their emotional well-being and that they were interested in participating in an intervention that included counseling. So I think that's one important point to make when looking at the individuals who have undergone this intervention. Then with regard to goals, that was really individual for each person. It ranged from participating more in prayer groups to calling family members or friends instead of emailing them or not picking up the phone out of a sense of a fear of what would happen during the conversation. And yes, so these goals were all created collaboratively with with me as the clinician and with the participant, to really determine what was going to be meaningful and valuable in these individuals lives and what to work towards, collectively and in our time together. Lyssa Rome That makes so much sense and I can imagine how addressing some of the psychosocial challenges, as you have described them, would would allow people to participate in the ways that you were just detailing. I'm curious about.. you mentioned earlier on, that we don't always get a lot of training as SLPs in specific counseling approaches, and often are more comfortable, I think, with the educational counseling piece of things. So what kind of training would clinicians need—both future clinicians and current clinicians—in order to use this type of approach with our clients? Kristin Shaffer Mendez Yeah, that's, that's a great question. And that's what we're continuing to examine, as we continue to move through our phases of research and so we've now completed pilot research and in the future we're looking at efficacy research and and later on down the line, I can say more generally, what I envision is that these types of counseling approaches and the evidence base wherein, that we discover, will then be incorporated more universally in graduate school education. But not so that, necessarily, students are going to graduate being able to implement and provide these specialized counseling approaches, but so that they have a sense of the theoretical underpinnings and the basic constructs of these approaches, and even thinking about patient candidacy—who might be appropriate and who might benefit from these approaches. But then in the future, I can see there being continuing education opportunities similar to LSVT, the Lee Silverman approach, where maybe it's a two-day training, for example, and intensive training where individuals are provided with a lot of hands-on experiential learning, so that they are equipped with those tools that they can then implement with patients. Lyssa Rome It brings to mind another question that I have, which I think is often on my mind anyway, when I think about counseling approaches, which is: We know that a lot as you've been describing, a lot of anxiety or mood related challenges are directly related to communication-specific disorders, in this case, PPA. So as we think about the needs, the psychosocial needs of people with PPA, given that so many of those needs are directly related to this progressive communication disorder, how do we know what's within our scope, and when we might consider referring to a mental health professional, for example, if the needs are greater than what we are able to meet on our own? Kristin Schaffer Mendez That's a great question. And I do believe as speech language pathologists we’re uniquely equipped to providing counseling. We are the communication experts. And we possess specialized skills in understanding individuals with communication impairments, and helping them express themselves. And this is something that a lot of licensed mental health professionals may not have the background training and experience in. So with regards to determining when to potentially refer, so it's completely normal, we would argue, that individuals facing a neurogenic communication disorder, such as PPA will, will likely experience grief and loss and suffering as they're processing their diagnosis and navigating their days. But if we have a sense that they are presenting with a mood and or anxiety disorder that may be undiagnosed, then certainly the first step is to administer a mental health screening or an anxiety disorder screening, there are several available online that are free—the Personal Health Questionnaire, the Generalized Anxiety Disorder Scale, for instance. And then if the results do show that there is the potential presence of mood or anxiety disorder, then having having a conversation and coming from a place of care and concern and letting our patient know that we do have concerns that these individuals may be presenting with challenges that go beyond what we are able and equipped to provide. And then from there, looking into finding mental health professionals within the community, so that we can give that warm handoff and engage in interprofessional collaboration, if need be, if the mental... /episode/index/show/aphasiaaccess/id/26500083

Episode #102: Researching Health Disparities in Minority Stroke Survivors with Aphasia with Davetrina Seles-Gadson 03/28/2023

Episode #102: Researching Health Disparities in Minority Stroke Survivors with Aphasia with Davetrina Seles-Gadson Welcome to the Aphasia Access Aphasia Conversations Podcast. 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 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 Davetrina Seles Gadson. We'll discuss her work involving how brain lesion characteristics may intersect with aphasia recovery, race, and psychosocial factors, as well as issues involving health-related quality of life assessments. Dr. Davetrina Seles Gadson is the first Black-American to graduate with a Ph.D. in Communication Sciences and Disorders from the University of Georgia. She is a neuroscientist and certified speech-language pathologist with expertise in adult neurological rehabilitation and patient-centered outcomes. She currently is Research Faculty, in the Department of Rehabilitation Medicine, at Georgetown University. Dr. Gadson’s research focuses on the influence of health disparities in minority stroke survivors with aphasia and the effect of such disparities on brain functioning, aphasia severity, and health-related quality of life. Most rewardingly Dr. Gadson is the co-host of “Brain Friends”, a podcast for neuro nerds and stroke survivors to talk about aphasia advocacy, language recovery, and community. Listener Take-aways In today’s episode you will: Learn how health disparities may influence aphasia outcomes and why more research is needed Discover why "Brain Friends" is another podcast you'll want to add to your playlist. Gain practical tips on how to build confidence in intercultural interactions with your clients Hear how health-related quality of life (HRQL) measures can help inform your clinical practice We’d like to recognize Kasey Trebilcock & Amanda Zalucki, students in the Strong Story Lab at CMU, for their assistance with this transcript. Show notes edited for conciseness Ellen Bernstein-Ellis (EBE) EBE: I am so excited to have a fellow podcaster here today. Thank you for being here. And I just listened to the January Brain Friend’s episode. It was great. So I hope our listeners will check it out too. I want to also give a shout out to your consumer stakeholder and co-podcaster, Angie Cauthorn, because she was a featured guest on episode 70, in June of 2021, as we recognized Aphasia Awareness Month, and you just spoke with her about aphasia types and aphasia conferences, and you gave a big shout out to CAC and you gave clinical aphasiology conference and you also gave a big shout out to the Aphasia Access Leadership Summit. So really important conferences, I think that stimulate a lot of discussion and values around patient centered care. And your Brain Friends podcast just has a great backstory. So why don't we just share about how that all started? Where's the backstory to that, Davetrina? DAVETRINA SELES GADSON: Thank you so much for having me. This is such an exciting opportunity. So, Brain Friends started with myself and Angie. We were on the National Aphasia Association's Black Aphasia group call and I just loved her energy. She reached out to me after we finished that group call, and we just started talking. Our conversations were so informative, and it just lit this passion and excitement in me. I said, “Hey, can I record some of these, and maybe we do like a podcast?”, and she was totally down for it. It's just been such an innovative and fun way to disseminate science and engage many stakeholders. EBE: I want to thank Darlene Williamson, who's president of the National Aphasia Association for sending me a little more information. You told me about this group, and so I wanted to find out more. She provided this description by Michael Obel-Omia and his wife Carolyn, and I hope I said his name correctly, who provide leadership to this group. And they said that in this group, the Black American Aphasia Conversation group, “provides a place for Black people with aphasia to share their stories, provide support, meditation, and brainstorm ways to advocate and consider policies. We will discuss the unique challenges and gifts we share due to our experiences with disability and race.” I found out that you can reach out to the National Aphasia Association (NAA) for more information and to get on the email list for a meeting notifications. And in fact, I put the registration link in our show notes today. So, sounds like that group has been a meaningful discussion forum for you, too. SELES GADSON: It's been so fun. I share how for me, I've been in the field practicing for a little over 16 years now, and this was my first time being in a room with so many people that look like me. And for many of the survivors on the call, I was one of their first Black SLPs that they had ever met. Just even having that connection, and being able to speak to some of the challenges, and some of the things culturally that we both share has been my outlet, biweekly. EBE: I’m going to make sure we have that link in our show notes. Also, the link to your podcast because I encourage people to listen to Brain Friends, I've really enjoyed it. When you and I were planning for this episode today, you talked about how being part of the National Aphasia Association’s Black American Aphasia Group really helped to energize you and the research you were doing, and what a nice integration of life that was. I will want to tell our listeners about one more wonderful thing, and that's the interview you were part of on the ASHA Voices podcast as well as the related article in the ASHA leader, where I learned more about your journey to doing this research. So, as you provided clinical services for a Black client as an outpatient clinician, and this is pre- doctoral research, you recognized that there was a significant gap in the literature around working with African Americans with aphasia. You saw the need to understand the impact of aphasia on identity and motivation in order to best help this particular client. And those are both really important concepts within the Life-Participation Approach to Aphasia (LPAA) framework as well. So, then you shared that you got some important advice from an important mentor. Do you want to share what happened next? SELES GADSON: Definitely. So, one thing that's also unique about that time is that at that point in my career, I had worked in many of the clinical settings. I had done acute care, inpatient rehabilitation, skilled nursing facility, and even worked as a travel SLP traveling throughout the United States. And so, once I had got to that outpatient setting, it was different from any of the other settings because these individuals were home. And often times, they wanted to get back to work. I remember feeling a little discouraged because I wasn't finding research on a lot of functional treatment approaches or functional therapy. In addition, I wasn't finding research on black stroke survivors with aphasia. And so, I mentioned to one of my mentors at the time, Dr. Paul Rao. I said, “what's going on in the field? And I'm not seeing this, and I have this client, and I don't really know what to do.” And he said to me, “Stop complaining kiddo, and go back and get your PhD.” Admittedly, when he said it, it was kind of like, “okay fine, I'll go do it.” I don't think I realized all what it would take. That's what really made me pursue the degree was this notion that I could help facilitate some of that change and bring some of the research that I needed to see. EBE: That is so important. And that story really made me reflect on another story that has really impacted me from a dear colleague, because you experienced in your doctoral work some concerns about doing research on Black Americans because your interest was seen, as it said in I think the ASHA Voices interview or in the Leader, as “personally motivated.” Your story mirrors one that a colleague and dear friend, Nidhi Mahindra, told me as well. During her doctoral research, she was told that while pursuing multicultural interests were worthy, that she may face barriers to getting funding to pursue that line of work. That might be problematic, right? She had to struggle with that. Despite that daunting message, she persisted, and then was funded by ASHA on a grant studying barriers influencing minority clients’ access to speech pathology and audiology. Nidhi reminded me how our life experiences can often inform our work in important and valuable ways. Davetrina, you've channeled your experiences into these explicit observations and data that you shared with your doctoral committee. That was a really important part of moving forward. Do you want to share some of the points gathered for that doctoral committee to help support why this research is so important? SELES GADSON: First, I want to thank Nidhi. Hopefully I'm pronouncing her name right, for her perseverance, because it was some of her work that helped me in my dissertation. Being able to cite her just really shows the importance that everybody plays in breaking barriers and pursuing the things that really speak to them. And one of the things that I'll clarify, it was two parts in pleading this case. The first part was that I changed the committee. I think that that was a supportive thing. And then, the second part was that when I prepared all of the research on why I needed to do this work. Some of the research looked at what we knew already with stroke recovery in minoritized groups, which was that Black African Americans were twice as likely to have a recurrent stroke than any other ethnic group and what we were seeing in the aphasia literature for Black Americans, which was the narrative of Black Americans having longer hospital stays, more hospital costs, but poor functional outcomes. And so, it was these two key pieces that I had really gathered. When I went back to the new committee to share and plead my case on why I really wanted to do this research, they had that initial onset of knowing that this research definitely needs to be done. I think that that's what helped it go through. EBE: Wow. I think those are really important reasons. That whole concept of allowing our life experiences to inform our work and to value that. As we start to talk about your research, and I'm really excited to get to share this amazing work you're doing, I thought it might be helpful to define some of the terms that are integral to this research Some of the definitions are a little tough to wrap your arms around because they're not consistent in the literature or are still waiting to develop. Let’s start by discussing what you want the listeners to know about the definition for health-related quality of life, or, as we'll call it, HRQL. SELES GADSON: HRQL is operationally defined that it's multi-dimensional. The way I define it a lot in my work is the perception of the individual's ability to lead a fulfilling life in the presence of a chronic disease or disability such as aphasia, but really their perception in five domains. The five domains that I look at in my work are physical, mental, emotional, social communication, and then role, the individual's ability to get back into the activities that they used to be able to do. EBE: Okay, that's really helpful. I think we should also discuss or define patient-reported outcomes or PROs. Sometimes they are also referred to as PROM's, patient-reported outcome measurements. How do they relate to HRQLs? SELES GADSON: Patient-reported outcomes is a health outcome directly reported by the patient without interpretation. Patient-reported outcomes often look at the status of the health condition. The biggest thing about patient-reported outcomes is that it's without the interpretation of the practitioner. So, whatever the patient says is what we're going to take as gold. EBE: Why is it particularly important then to look at HRQOL for Black stroke survivors? SELES GADSON: That's such a great question. And so I want to break it down in two parts. I think the first part is that given the lack of normative data for Black stroke survivors, when we're only looking at clinician-reported outcomes, that's where we get to this bias and the normative bias. I know that there's research out where there are some outcomes to where we're already seeing this five-point difference. And for some research, that five-point difference is considered clinically meaningful. I think that if we're not using these patient-reported reported outcomes, then we put ourselves in a position to contribute to the disparities that we're seeing in standardized assessments. So that's the first answer. The second reason is that we know that nonclinical factors such as physician-race concordance drive up to 80% of what we're seeing in poor functional outcomes in minoritized groups. If we're not asking the person, then we're not able to really understand the things that they want to do, and we're already coming in with this majority type attitude which could influence one's participation in therapy. The last thing that I think is most important, whether you're Black, white, purple, whatever, is that we have these insurance demands that sometimes may not allow us to get to all the things that we may see from an impairment base. By using the patient-reported outcomes, we are helping structure therapy in ways that matter most to the patient. EBE: Well, that reminds me of this amazing quote that I was hoping I could work in today. I circled it in big yellow pen when I first read through your research. You said that it's really important because, due to the lower HRQL that we find in individuals with aphasia, it’s “imperative that the development of a treatment plan incorporates what the patient prioritizes. And it's imperative that clinicians have a way to measure these subjective attributes to make a meaningful impact on care.” That's what we want to do. SELES GADSON: So important, because I think what we have to realize is that part of our role as the practitioners providing this skilled intervention, is really helping the individual get back to what they want to do. And I think that if we're not asking them what they want to do, then we're not really able to structure therapy in matters that mean the most to them, but also help them to start to recognize that as part of this identity with aphasia, that there's this new normal for them. Sometimes, individuals are going to rate themselves based off of what they used to be able to do. But if they know that one of their goals was to be able to talk on the phone, or to play bridge with their friends, and we worked on that in therapy, they're now able to look and see, before I scored my telephone confidence at a 50. Now I feel like I'm at a 90, and so sometimes that own self-recognition can support motivation, and can even support therapy, once insurance dollars run out. EBE: I really appreciated doing this deeper dive into PROs as I read through some of your research. And one of the resources I came across was a really interesting table that talked about six categories of PROs. And I'll put a link in the show notes to a 2015 book by Cella, Hahn, Jensen and colleagues called “Patient-Reported Outcomes and Performance Measurement.” (They list six different kinds of PROs in a helpful table.) But the main category that your work is utilizing is actually these HRQL measures. You’ve been stating why it's so important. HRQL PROs help to frame diagnostics and treatment because you're trying to prioritize what the patient wants and needs-- what they're expressing. SELES GADSON: Right, exactly. I think that one of the things that it's really important for practitioners to understand, is that these things are mandated by what we see in our scope of practice. When I say mandated, I mean we are called to reduce the cost of care by designing and implementing treatment that focuses on helping the individual. If we're not asking the individual what they want to get back to, then I think that we're putting ourself at a position that makes it more challenging to serve in that way. EBE: One of the things we like to do on this podcast is to provide resources that will help clinicians think differently or do something differently tomorrow as they meet face-to-face with their clients. And one of the things I thought we’d put in our show notes is a link to the PROMIS website, because that was something you've used in your research. Do you want to explain a little bit about that website? SELES GADSON: One of the things that I like about the PROMIS website is that it has a list of health outcomes available to use for a range of individuals-- for pediatrics, for adults. I like that it's free, most of them, and I think that it's a good place to start. Some of the outcomes on that website are also even appropriate for in acute care, meaning that they may not take a long time to administer. And so, I think that that's a good place to start. EBE: Well, thank you. And I want to move right into this wonderful paper where you are co-author with Wesley, van der Stelt, Lacey, DeMarco, Snider, & Turkeltaub, that looked at how brain lesion location interacts with HRQL. Can you share a couple key takeaways from that paper? I hope you'll highlight the one related to depression and HRQL. We're having a lot of research right now around the emotional impact of aphasia and how that will impact recovery outcomes as well. So, tell us a little bit more about that work. SELES GADSON: We looked at the domains of health-related quality of life associated with specific deficits and lesion locations in chronic aphasia. We examined the relationship between HRQL using the Stroke and Aphasia Quality of Life Scale by Hilari and her colleagues, as well as a depression scale, and different impairment-based measures---our battery that we used here. What we found was that language production and depression predicted communication HRQL, meaning that those individuals that reported lower communication HRQL also had a significant depression associated with it. We did lesion symptom mapping in this study. Basically, what we were looking at is to see if HRQL mapped on to discrete areas of the brain. We found that individuals that reported lower psychosocial HRQL had inferior frontal and anterior insula lesions; where individuals who reported lower physical HRQL had lesions in the basal ganglia. This confirmed for us that even though HRQL is this subjective perception, we were seeing it map on to these very specific areas in the brain that also predicted some of the impairment measures that we know of. EBE: That can get us to start thinking about if we have patients with these types of lesions, maybe to be more on the alert for depression. I think that's one point you made. But you also mentioned another important takeaway in the study about the impact of depression on HRQL related to the training of SLPs. This all ties together. What are your thoughts there? SELES GADSON: I think that when we are recognizing that individuals with aphasia are experiencing a new normal, and I think that the research has been very clear on understanding that depression does relate to and contribute to one's communication. I think that there is an opportunity for speech-language pathologists to have more counseling classes. And again, make sure that we're tapping into what the patient wants to do in order to hopefully help mitigate some of those feelings of depression. EBE: I really endorse building those counseling skills in our graduate programs for our students, so they go out feeling more confident and more skilled and knowing that that is going to be an... /episode/index/show/aphasiaaccess/id/26364981

Episode #101: The Emotional Journey of Aphasia with Debra Meyerson and Steve Zuckerman 03/14/2023

Episode #101: The Emotional Journey of Aphasia with Debra Meyerson and Steve Zuckerman Welcome to the Aphasia Access Aphasia Conversations Podcast. I’m Katie Strong and I’m 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. Debra Meyerson and Steve Zuckerman. We’ll be talking about their bike ride across the country, Stroke Across America, as well as the importance of identity and storytelling in a person’s journey with aphasia. Before we get into the conversation, let me tell you a bit about our guests. Debra Meyerson was, until her stroke in 2010, a tenured professor of organizational behavior at Stanford University’s School of Education. Debra’s most significant contribution from that period was (HBS Press, 2001). More recently, she authored (Andrews McMeel Publishing, 2019) and is co-founder and co-chair, with her husband Steve Zuckerman, of Stroke Onward, a nonprofit working to ensure stroke survivors and their supporters have the resources needed to rebuild identities and rewarding lives. Steve Zuckerman is, along with Debra, co-founder and co-chair of Stroke Onward; he has been Debra’s care partner since her stroke in 2010. He has held leadership roles at Self-Help, a nationally recognized economic justice nonprofit, since 2006 and still serves part time as a Senior Advisor. Before that, he was a managing director at a private equity firm. In the summer of 2022, Debra and Steve led – a 100-day cross country bike ride, from Oregon to Boston, to raise awareness for stroke, aphasia, and the importance of the emotional journey in recovery. In this episode you will: be inspired learning about the bike ride, Stroke Across America, and its effort to raise awareness about the emotional journal of living with stroke and aphasia. learn about the power of story in reconstructing identity in people living with aphasia. become aware of Stroke Onward’s mission to support the emotional journey of rebuilding identities and rewarding lives. Katie: Welcome Debra and Steve. I’m so happy that you are here with me today. Debra: Thank you so much, Katie. Steve: It's great to be here. Katie: Well, I'm just so excited for our listeners to be able to hear about what you've got going on, and I'd love to start with what you were up to last summer. You did an amazing bike ride across the U.S. called Stroke Across America. Congratulations! I mean it was a big deal! Can you tell us about it? Debra: Sure. Stroke Across America was a bike ride across the US and Canada to raise awareness about stroke, brain injury and aphasia. We wanted to spotlight the emotional journey after stroke. How do we rebuild our identities and live meaningful lives? We rode 4,500 miles over 100 days, traveling from Oregon to Boston. There was a core team of six riders and others who joined us for portions of the ride. We became a family. I didn't expect that. Katie: That's fantastic. Tell me about who rode with you and became family. Steve: As Deb said, we had six core riders most of the way across the country. In addition to the two of us, a woman named Whitney Hardy, who's actually a close family friend. She’s a young woman in her thirties who unfortunately suffered a traumatic brain injury about four years after she graduated from college and suffers no ongoing physical disabilities but has some cognitive issues and memory issues. She rode with us from the beginning to the end. Another stroke survivor was Michael Obel-Omia, who I know is an active participant in Aphasia Access. Michael is a stroke survivor who also lives with aphasia. He joined us about 15 days late because his son was graduating from college, so he joined us in Missoula, Montana. We had two wonderful summer interns, Emily and Alex. We met Emily through her grandfather, who was a stroke survivor and hoped to ride with us but didn't end up riding with us. Emily and Alex are both students at Washington University, St. Louis. They traded off, one rode and one worked, every other day. We can't say enough about the wonderful, not just competent and great work they did, but the energy they brought. They really helped make it special. I guess our seventh team member was our then roughly one-and-a-half-year-old golden doodle named Rusty who was along for the ride. Sometimes she rode in a trailer behind our bike and sometimes in one of the support vehicles. We had a group called Bike Eternity, a gentleman named Arlen Hall, who really arranged all the on-road logistics and the route. He and his team were just fabulous in terms of just making everything work. That was our family. Katie: It's quite a crew. Fantastic. I was wondering if you could tell us about a favorite experience from the ride. Debra: We hosted sixteen community events across the country. They brought together survivors, families, friends, stroke care professionals, and more. It was really inspiring to be with all these people. Building community and collaborating with others is the only path to real change. And you were at the Ann Arbor event? Katie: Absolutely. Yeah. My friend Becca and I came down to the Ann Arbor event. I think it was Dexter or something. Debra: Yeah Katie: Boy, did we show you how we can have rain in Michigan! Debra: I know. Oh, yeah. Katie: Oh, my goodness. Yeah, it was great. Even though we had rain, there was so much great energy around the event. I can feel what you're talking about. Steve: I think the events were kind of really the most powerful experience. But Deb, you were going to talk about one particular ride you loved. Debra: I loved riding past Cameron Pass in Colorado for 30 miles up and 40 miles down. Katie: Wow! Steve: Yeah, so just to add a little bit to that, because I think that one day of riding really, I mean, every day was fantastic. We just loved the riding. But this one stood out for all of us. It was from a town called Walden in Colorado, a bit east of Fort Collins to a campground called Stove Prairie Landing. The pass we rode over was about 10,276 feet, so we were up there. And as Deb said, we rode up for 30 Miles about 2000 feet, but then got to come down 4000 feet. The whole ride was in a canyon with dramatic mountains and a river that we happened to catch at the right time of the year because the snow was melting. So, it was just a rushing river where we got the sound, the sights, and sometimes the spray of rapids as we're cruising downhill. And then there was just a perfect riverside campground at the end. It was just sort of a magical day. Katie: Yeah. As you were describing it, I wanted to use the word magical! So, I agree. Yeah. Fantastic. I'm sure it wasn't all easy street. I was wondering if you could tell us one of the hardest things about planning such a big activity. I mean, this was a big event. You had several events along the way, but you know, tell us a little bit about the planning. Debra: Organizing this event was so hard, but it was so important and so impactful. We had sixteen events: three events before we started riding in Palo Alto, Bend, and Portland, eleven along the way, and two in Boston after we finished. We had so much to do after the rides and after dinner, such as PR, social media, Stroke Onward, events, and a documentary film. There was so much to do! We are really tired. Steve: Yeah, I think the biking certainly was a lot, but we weren't trying to ride fast. You know, one thing I say about biking is, if you want to ride long distances, you just have to ride long distances. You get used to it. So, that didn't really feel like a strain for us. And the organizing of the route, particularly with the help of Arlen, kind of got done ahead of time. It was a lot of work, but he's a pro and we put it together. But it was really, I guess we're “Type As” who can't get out of our own way. We built so much into the trip that it really was those evenings and our theoretical “rest days,” which were nonriding days. We renamed them “stress days.” We felt like we had to get everything done. So, you know, that was the hardest part of the trip. It was just how much we packed in. We jokingly say, but it may not be a joke, “that someday we want to ride across the country where we have absolutely nothing to do but ride across the country.” That way, we can enjoy the evenings and the rest days, do a little more touristing, and spend time meeting people along the way. Katie: Yeah, it was very focused. You were very intentional about gaining awareness and supporting community. And I'm sure that it sounds like there was lots to do beyond just pedaling. You mentioned earlier about a campground, but I'm curious, where did you stay along the way? Steve: Our main support vehicle was an RV, pulling a trailer with a lot of gear. We organized mostly around staying in campgrounds. Partly to keep the cost down and partly because we didn't want to have to stay rooted to where the hotels and motels were. And so, Deb and I got the privilege of sleeping in the RV. It was a small RV, but very comfortable. And the rest of the group was camping, so we had tents and cots, and all you would need for relatively comfortable camping. About one or two nights a week, we would end up staying in a motel, partly just to give the folks who are camping a little bit of a break. We actually came to enjoy the RV so much; we almost preferred it to the hotels. Then, one of the real highlights of the trip was we were able to see a lot of friends going across the country. Particularly in the cities where we held events. We almost, with maybe one exception, always had a rest day connected to the event. Probably at about half of those we ended up staying with friends. That was really special to be able to involve more people in our lives in the journey. Katie: Yeah, I was thinking when you were in Ann Arbor. Deb, you had a number of colleagues and friends that came to the Dexter event. Debra: Yes, in Detroit, two days later, we met with my middle school buddies, Debbie and Debbie and Debbie. Katie: I love that, fantastic! That’s great! Well, riding across the country is a huge endeavor. What made you decide to do it? Debra: Steve. Steve: Deb would say, “Steve made me decide to do it.” Well, actually, it is true. I had a close friend from college who rode across the country right after we graduated from college. From that day, I always said, “that's something I want to do”. As I got older and older and hadn't done it, it was kind of rising to the top of the proverbial bucket list. But cycling really has been a huge part of our recovery from Deb’s stroke. It has been the best way that we can continue to do a lot of the things we love - exercise, adventuring, seeing new places, and spending time with friends. We had never ridden a tandem before Deb’s stroke, we rode individual bikes. It was a bit of a challenge for Deb to give up control, understandably. But when we saw the opportunity to do it with a purpose, that's what kind of got us really excited. We were just starting to build Stroke Onward, we wanted to build awareness for the importance of the emotional journey, and events create good opportunities to attract attention. So, what better thing than to do something you've always wanted to do and do it with a purpose? That’s kind of how we got going. Katie: Well, it is inspirational, and I know a big focus of the trip was to raise awareness about stroke and aphasia. Debra, for people who might not know, could you share a little bit about your life story. Debra: Of course. My life story started earlier. In 2010, I was a professor at Stanford. I studied, taught, and wrote about feminism, diversity, and identity. Then, I had a severe stroke. For three years, I did therapy almost full time. I had to get my old life back, but I couldn't. My disabilities, especially aphasia, forced me to leave my job at Stanford. Giving up tenure was like a second punch in the gut. It was a huge trauma on top of my stroke trauma that started my identity crisis. Who am I now? Katie: So, Debra, I think that's what sparked you writing a book called Identity Theft. Can you tell us a little more about that? Debra: I had written two books before my stroke. I decided to write another book after my stroke, Identity Theft. Writing Identity Theft became my learning journey. It has helped me rebuild my identity. It took me five years, and I learned to accept lots of help. No one told me rebuilding identity is so central to recovery. I learned firsthand that it's so important. While researching Identity Theft, I learned that other survivors think so too. They had no advice and support for this. Steve: Maybe I'll add. Deb mentioned doing research for Identity Theft. From the very beginning when Deb decided to write a book, she didn't just want to write about her story. She was an academic, she wanted to bring in other people's points of view. And so, Deb interviewed twenty-five other survivors and probably another thirty-five people who were care partners, friends, families, and professional caregivers. Kind of the idea being that she wanted to be able to write about a diversity of people and stroke experiences because that would make the book more relatable and more accessible to more people. And that really kind of gets at one of the things that really struck me about Deb writing Identity Theft. In many ways, the writing of the book really reflected her personal journey. That at the beginning, she was kind of writing it to prove she could, she didn't want to let go of that identity as an academic. But very quickly, she realized that the process of writing it, as Deb said, was kind of her journey. She was able to turn her knowledge of identity and the lens on herself to really help rebuild her identity and her life. But along the way, she realized, “Man, there are so many other people out there who aren't being told about this and need resources.” I say this all the time, choosing to write a book when you have aphasia has got to be one of the bravest decisions because it puts you face to face with your frustrating disability every day. And there were a few times when Deb came downstairs and said, “I'm done,” “I'm not finishing the book,” “This is too frustrating,” and “I can't stand it”. But it was that knowledge that it could help other people that got her to push through that frustration. And that gets to kind of one of the big themes of our work, which is about finding purpose and having purpose and how that's often our biggest motivator in life, what we can give. So, that's kind of a little bit of the history of the book. Katie: I appreciate you sharing that. And as you were both talking, you were talking about this journey. And you know, thinking about the story and the writing and the rewriting of your identity. It really isn't about the product, not necessarily the book, which maybe initially that’s what you were interested in Deb. But really, the journey is where all the work and the reintegration of who you are and who you're going to be is. very powerful. Very powerful. It's such a great read. I've enjoyed the book very much. So, you have even moved forward beyond a book, and you've started a nonprofit. It's been established for a little bit now. Can you tell us about your nonprofit, Stroke Onward? Debra: Yes. I created it three, no, four years ago? Our mission is to ensure stroke survivors and their supporters have those tools necessary to rebuild identities and rewarding lives. The vision is a stroke system of care that fully supports every survivor's emotional journey and recovery. Steve: Maybe I'll add. I think, clearly, the issues of critical care and helping people survive a stroke, and then all the work on rehabilitation is critical. What we saw is that a lot of people don't get all their capabilities back. It's almost like, well, if recovery means rehabilitation, then does that mean everybody who doesn't fully recover their capabilities, has a failed recovery? And we were just unwilling to accept that. Recovery had to mean more than just capabilities. That's why we decided to really focus on that next step in recovery, which is the emotional journey. So, we really think about our work around three areas. One is raising awareness, just that this whole issue of the emotional journey is really important and doesn't get enough attention. Even if people realize it's important and say, “Well, gosh, where can I get help with this?” There aren't enough resources out there. You know, at the end of the day, as Deb said, “it's about system change.” That we would hope that 10 years from now, a person who suffers a stroke and their family enters a system that not only provides good critical care and points them in the direction of good rehab, but also creates a framework and resources for this part of recovery, for the emotional journey. I won't go through all the actual things we do. Hopefully, you'll be able to post the website and people can go and see more about stroke onward, www.strokeonward.org, easy to remember. Katie: Absolutely. Debra: And there’s the book discussion guides. Steve: Yeah, well, one of the places in that the speech therapy community has been so supportive and such a wonderful partner is with the creation of our book discussion guides. Our colleague, Jodi Kravitz, led the creation so that the book can be more accessible. There's a guide, you know, with the idea being a group of people with aphasia can read the book together and have a facilitated discussion with a guide. But also, we created separate guides for families, speech therapists, and other health care workers. Just again, the whole idea of trying to make the material accessible, digestible, and useful for people who are going through what we went through, which was the identity crisis and having to rebuild our lives. Katie: Absolutely, we use the resources for our local book club here at Central Michigan University and our Lansing Area Aphasia Support Group. The materials were great, but the book just brought forth so much rich discussion. Debra: Yeah. Katie: You know, not all of it was easy to read. There is some tough stuff; you don't skirt the issues. I think it really was a very meaningful experience for our members and the students that were a part of the group to be able to hear the journey, to hear what maybe hadn't been addressed, to hear how people had moved forward with things, and the areas where we really do need to be thinking more about as healthcare providers. It is important that we can support the whole person and not just fix the physical or the language. It’s a whole emotional journey that you're moving forward with, which in Stroke Onward is really important. Well, as you know, a lot of my work is about the importance of storytelling. Deb, I was wondering if you could talk about how storytelling impacts your work. Maybe even share a few stories from your work. Debra: Sure. Storytelling is so important. We are always changing, and our stories evolve over time. Storytelling helps us navigate the emotional journey after a stroke. And in my book, Identity Theft, I share my story and the stories of others so that survivors don’t feel alone. I would like to share one story that helped me recognize that life could be good after my stroke. Seven months after my stroke, my friend Ann invited me to her 50th birthday weekend in Palm Springs with tennis, hiking, talking, and biking. I said, “No...no, no, no.” I would need so much help, and most of all, I could barely talk at all. Conversations would be loud and lively. I would feel frustrated,... /episode/index/show/aphasiaaccess/id/26059344

Episode #100. Best practices in funding your aphasia program with Kathryn Shelley 02/28/2023

Episode #100. Best practices in funding your aphasia program with Kathryn Shelley 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 strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resource I'm today's host for an episode that will feature Kathryn Shelley, former Aphasia Access President and co-founder and current Grant Director for the Aphasia Center of West Texas. Kathryn was our guest for episode #1 of the Aphasia Access Conversations Podcast and we are delighted and honored to invite her back to be the guest on this 100th episode of our Aphasia Conversations Podcast. We'll discuss financial sustainability of Life Participation programs across a variety of settings, with a focus on best practices for fundraising. Guest bio Kathryn Shelley has over 30 years’ experience in nonprofit management, board leadership, strategic planning, marketing, and fundraising. She is co-founder, prior Executive Director, Marketing & Development Director, and currently the Grants Director for the Aphasia Center of West Texas, one of the earliest community-based nonprofits in the U.S. to incorporate the Life Participation Approach to Aphasia. Prior to her father’s stroke in 2001 and his resulting aphasia, Kathryn was lead designer and co-owner of a marketing and graphic design firm in Austin Texas. Listener Take-aways In today’s episode you will: Hear how two events involving chocolate and rock and roll have grown awareness and funds. Find out how typical stages of organizational development might influence your fundraising capacity. Gain practical tips for sharing the impact of your aphasia program to help raise awareness and funding. Learn about some resources available for supporting your nonprofit know-how. Show notes edited for conciseness and clarity Ellen Bernstein-Ellis So, Kathryn, I want to give you a shout out and just a great big welcome. It took 100 episodes, but thank you for coming back. Kathryn Shelley Thank you so much for having me, Ellen. Ellen Bernstein-Ellis 01:24 Absolutely, I was glad to introduce you. You've done so much and have worn so many different hats, Kathryn, and I'm excited to get to have a discussion with you today. So again, welcome. Kathryn Shelley 02:20 Thank you. Ellen Bernstein-Ellis 02:21 We like to start off the episodes with a fun question. Can you share an Aphasia Access favorite resource? Kathryn Shelley 02:33 Well, it's a hard pick, there are so many. But let me tell you about the one that I'm involved in right now - top of mind. It's an online certificate and badge course, E-badge course, called Person Centered care, Life Participation Approach to Aphasia series. Aphasia Access just launched the first in that series called The Life Participation, Knowledge Course. It's so much more than a webinar. It's contemporary, and it’s how you interact with each of eight modules. You earn .25 CEUs, and at the end you receive a clickable E badge which takes anybody, an employer, your peers, if you have that in your email signature, to a site that shows everything that you did to earn that badge. It's so contemporary and so comprehensive, and it will give someone a foundational understanding of the Life Participation Approach. I'm loving working with Melinda Corwin and Nina Simmons-Mackie, and just the entire team of subject matter experts. The reviews are coming in from both professors teaching the next generation and current speech pathologists that it is really fantastic and very, very helpful. Ellen Bernstein-Ellis 04:06 We can also point our listeners to Episode 92 to learn more about this course, because we actually interviewed Melinda and Brooke Hallowell. So that's another place they can go to learn more. Can you explain to the listeners how they can access the course? Kathryn Shelley 04:27 On AphasiaAccess.org, you'll see the link on the homepage that will take you over to our new Academy, which is the platform where all of our interactive courses are. It's an easy sign up to be on that platform, and then you'll see the course right there. Ellen Bernstein-Ellis 04:48 That's great. Thank you. I don't blame you for picking that today for a favorite. To celebrate this 100th episode, I was wondering, Kathryn, if I could ask you to share with our listeners the backstory to the start of this podcast. Just a little insider history. Kathryn Shelley 05:07 Sure. Let's see. It was Nina Simmons-Mackie and I in a daydreaming conversation wondering how to reach busy professionals with a free product to connect them to the wealth of practical tips and information that is available through all the people that make up Aphasia Access. It was Nina who said, “How about a podcast, people wouldn't have to carve out work time, they can listen in a car, or on a walk, anytime.” And then we brainstormed who might entertain heading up this new endeavor and be the type of person others would say yes to. So Ellen, I was simply the one fortunate enough to pitch the idea to you. So it's really you and the amazing podcast team that made it happen and keep it going. Ellen Bernstein-Ellis 06:01 Thank you. Those are very, very kind words, and very appreciated. I just have to give a shout out to my colleagues who have been part of this collaborative team along the way, the whole 100 episodes. Nidhi Mahendra, Katie Strong, Jerry Hoepner, Janet Patterson, and Alyssa Rome. They've all contributed to this podcast so much and they are a joy to work with. And of course, I have to thank Todd Von Deak, Jess Campbell and Lisa McCracken, of Aphasia Access, who make sure we have all the logistical support in place. And one more thank you, and that's to the 100 plus guests. Just thank you for sharing your stories and your incredible work with our listeners. You know, maybe one more thank you, and that's to the listeners, because we just so appreciate the support. Thank you for sharing the podcast with your colleagues and your students. We are excited to see it grow. Kathryn Shelley 06:53 You told me that there's over 102,000 downloads that have been verified. So how cool is that? Ellen Bernstein-Ellis 07:02 We've been amazed to see that it's being listened to in over 50 countries. We've just been really excited and honored to be part of this. So thank you. And again, I'm glad you're here today. We didn't get a chance to describe your Aphasia Center very much when you were interviewed for episode one. You did share the why though, how your dad's own experience with aphasia was an important part of the story for starting the Aphasia Center at West Texas in Midland. You are a co-founder of that center and it's celebrating its 20th anniversary. That's a really special milestone. Maybe you could share a little bit about what your center looks like today. Kathryn Shelley 07:45 Sure, we're in a standalone building. We have multiple groups three days a week. Conversation groups are the backbone. Additionally, we have raised bed gardening, cooking, computer lab, and woodworking. All the groups are ever changing through the years according to the interests of our members. We've had book clubs, singing, photography, art,. Until COVID, we had a very active out and about program, which got people out of the center going to field trips to local museums, nature preserve, restaurants. We're all so glad it's starting to ramp back up. Ellen Bernstein-Ellis 08:25 Sounds like amazing programming. I just have to acknowledge the 20th. It's a special milestone and really something to celebrate and an opportunity to reflect. Kathryn Shelley 08:35 Yes, it definitely is. And I'm really humbled and proud that 20 years later, that the spirit of the place, the spirit of the Aphasia Center looks and feels really as vibrant as it did during our startup years. I think that vibrancy remains so contagious, because we continue to serve our mission, which is to walk alongside aphasia survivors, who thought their life was basically over, then watch that depression evolve into hope and a pathway to embrace life again. So it really continues to be those real life stories that keep our staff, our volunteers and our investors so energized. I think in terms of today's financial sustainability topic, at 20 years, that looks different than in the very beginning, because we have investors that have now been with us for decades. They've guided us through the stock market crash of 2008. And then when we outgrew our early meeting spaces, to launch a capital campaign and buy a building. There are people who have stepped up through COVID. So we've really grown into our mature stage of development and our reputation certainly helps us attract and sustain these long term relationships. Ellen Bernstein-Ellis 10:05 Kathryn, your center works really hard at cultivating grant support and building a donor base. But I really want to share with the listeners some of the stellar annual events that are associated with your center. I certainly have been watching this infamous Chocolate Decadence event that you host prior to Valentine's Day each year. I'm really just in awe of your center's ability to create these events. Could you share some tips on how you build a successful team to take on something like this and how the members of your center are involved? Kathryn Shelley 10:43 Sure. The first thing I would say is do not attempt this in year one. Events, special events, just take so much staff time and volunteer effort to put on. Chocolate Decadence started in our fourth year, when I would say we were entering our adolescent stage of development. Our donor base and our database was growing. We'd populated our board by then with people in media and marketing plus leaders in business and health care. Word was getting out in more and more spheres about us. Invitations to speak were on the wise, and that's when a generous woman with a long history of philanthropy and volunteer service presented her idea to our board. She came to us and to our board and said that she had just attended a chocolate themed fundraiser in another state, and that she thought it would do well in our region. And then, of course, everybody was over the moon at that idea. And she said, if you're interested, I’ll chair the first year. She brought her own volunteers in the beginning, then it evolved from there with friends of friends, and it kept going. So at this point, Chocolate Decadence continues to be an elegant night, and it raises around 40% of our general operating funds. It is the gift that keeps on giving. Members do attend the event too. What's more life participation than that? One of the really dear things is that a family of one of our very loved founding board members who passed away knew what the center meant to their mother. That family underwrites the cost of the member tables as a way to honor their mother. Ellen Bernstein-Ellis 12:42 That is fabulous. What a great way to bring the community together and have the stakeholders be part of a really important night. So that's great. And it sounds to me like you're saying these events just take quite a team, like you need a cadre of volunteers. Kathryn Shelley 12:58 That's exactly right. We certainly have a large number of terrific volunteers who show up that night to help. One thing that I've seen really talked about in the volunteer world is that trends have changed over the last 20 years. And, of course, more after COVID. So there used to be a generation of community volunteers who made volunteering their job. And they served on lengthy committee tasks. They really took care of so many things about Chocolate Decadence. We've not seen a new generation that has that level of flexibility today. So I have to say Chocolate Decadence has streamlined by switching to a more full service venue and contracting out a lot of what volunteers handled before. Ellen Bernstein-Ellis 13:53 Yeah, I think I've noticed that too. And some of the other organizations that I've been involved with have noted this kind of change in trends of how you have to utilize volunteers. Kathryn Shelley 14:02 That's true. That's very true. Ellen Bernstein-Ellis 14:05 Well, I know that Chocolate Decadence is just an amazing event. It has chocolate, so you're off to the races with that. But you also do a concert, could you share a little bit about what that looks like? So I think that's a summer gathering. Is that right? Kathryn Shelley 14:21 That's right. And the Aphasia awareness concert is a different goal. Its main goal is awareness. So yes, it's an outdoor event with a fun tribute band. General Admission is free. So this year, you'll feel like you're witnessing Elton John in his early years. Ellen Bernstein-Ellis 14:40 Oh, now that's great. Kathryn Shelley 14:43 Yeah, so during the concert, we raise awareness about aphasia, how it impacts people, and that there's an Aphasia Center to help. The cost of the band is entirely underwritten by sponsors. And then because it's a free event, our television newspaper, and radio stations, trade or greatly reduce the cost of airtime for all the advertising. So it's a win-win as the media and a number of businesses want to have their names on the stage banners seen by that audience that night. It's usually a couple thousand people. Both of these events are just great ways for Aphasia Center members and families to get out of the house and participate. The fundraiser of Chocolate Decadence and the awareness raiser of the Concert are our two yearly events. Ellen Bernstein-Ellis 15:37 Both of them build community in their own way.. That's fabulous. Today I've been thinking about how we're going to talk about this. And whether you are a community based center, a university, or even a hospital program, sustainability has several pillars, and I am so glad that you kindly agreed today to address one of those pillars, specifically financial sustainability. I'm particularly grateful for this chance to learn from your expertise, Kathryn, because most SLP training programs rarely offer instruction on program development and management. Yet, we are frequently motivated to launch programs to meet the needs of the community we serve, and we often learn as we go. But this lack of knowledge might be a barrier to someone wanting to start a program. You mentioned during our planning meeting that there's a fundraising framework that involves understanding the organizational development stages, and you've already started to sprinkle our conversation with those words. Could you explain those stages to the listeners? Kathryn Shelley 16:44 Sure. So the typical stages, particularly in nonprofits, and I think they overlap to other settings, are often called infancy, or startup, adolescence and maturity. Most every organization or a program begins with a compelling story by someone who is smack in the middle of that story. So if we think about Jodi Morgan, who is a huge hearted speech pathologist in Jacksonville, Florida, she went to a crowdsourcing campaign populated with video clips of people with aphasia, answering what an aphasia center would mean to them, when they didn't have one to go to. Then, that led to starting the Brooks Aphasia Center. And of course, my own story is as a panicked daughter, who only saw a dismal life ahead for my father, and frankly, an overwhelming life for me. So the first thing I did was call around to get advice on who was one of our region's most respected SLPs. Over and over, I was given the name Beth Crawford. And so it was Beth and I on the original staff, and Beth remains the program director today. Ellen Bernstein-Ellis 18:00 That's fabulous to have that type of continuity and partnership. Kathryn Shelley 18:04 Absolutely. And then at the very beginning, the other person that's from that original staff, is Shun Kelly. She came on board as a CNA in our earliest days. All three of us are still there, 20 years later. But the startup stage of a new program is so often started by the people who are deeply affected. And, you know, there's a strong sense of ownership and often entrepreneurial staff emerges from the founders. So your nonprofit board of directors in those early stages is often more of a programming board, consumed with all the details of delivering service and creating those services. Ellen Bernstein-Ellis 18:49 Okay, so that's what the startup looks like, or the infancy stage. Let's move on to adolescence. Kathryn Shelley 18:56 It can be a little rocky, like the usual stage. When you move further into the adolescent stage, the conversations, of course, have evolved to how to ensure the well-being and the longevity of the organization. For a nonprofit, that's the stage where recruitment needs to happen to transition from the founding programming board to a governing managing board. This is where I've seen organizations falter and get stuck at this stage if their leadership team remains homogeneous. Even more so if staff isn't equipped or unable to dedicate the time needed for financial well-being. This is where expanding to experts in fund development, social and broadcast media, and corporate and healthcare leaders can really open new spheres of expertise and influence. Then of course, I'm thinking about if you are housed within a university setting, fundraising people are typically already in place within the Office of Advancement. Of course, that's where you're going to really keep that relationship, hopefully, top of mind. You are supplying good stories of the impact that you're making, so that the advancement office team is able to communicate those stories as they're doing fundraising for the university and your program. Ellen Bernstein-Ellis 20:41 How about moving on to the mature stage? Tell me a little bit about that. Kathryn Shelley 20:49 So yes, so the mature stage is where the governing managing board transitions to a true governing fundraising board. If you've already brought in a variety of skill sets in the previous stage, then it's more board members with high influence that are really more easily recruited. It's important to also keep the advancement officer with those news stories, and to keep your board just inspired with the stories of what you do. Ellen Bernstein-Ellis 21:26 If you happen to be an SLP, who is new to these types of concepts, is there a resource you can recommend to learn more? Kathryn Shelley 21:37 Absolutely, there's so many. I have to say that, at heart, I'm an introvert. Just the thought of asking for money makes my palms sweat, and it just feels rude. Ellen Bernstein-Ellis 21:51 Okay, I have sweaty palms too. Kathryn Shelley 21:55 But here's the thing. There are so many learning opportunities out there. I've taken advantage of so many that have been provided in our region, and that I could find online. Now, of course, Aphasia Access is full of people who have started small to large programs within all types of settings. Ellen Bernstein-Ellis 22:17 That's a great point. And that's part of the strength of that community. For sure. Kathryn Shelley 22:21 Absolutely. And I can tell you that even at the Aphasia Access Leadership Summit, this March, there's a roundtable session called “Show Me the Money”. There's a community of people, speech pathologists, you know, all waiting for you. Then, also, Aphasia Access is launching a new mentoring program, and it's a great place to get one on one advice about all kinds of topics. That's within Aphasia Access. Then I would suggest searching the internet to see if there's a Nonprofit Management Center near you, because they're scattered across the country. They are a... /episode/index/show/aphasiaaccess/id/26076525

Episode #99: Communication Partner Training for Health Care Professionals with Dr. Jytte Isaksen 02/14/2023

Episode #99: Communication Partner Training for Health Care Professionals with Dr. Jytte Isaksen Welcome to the Aphasia Access Aphasia Conversations Podcast. I’m Katie Strong and I’m 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. Jytte Isaksen. We’ll be talking about Making Communication about Healthcare Everyone’s Responsibility: Communication Partner Training for Health Care Professionals Jytte Isaksen is an associate professor at the Department of Language and Communication, University of Southern Denmark in Odense, Denmark. She has a background as speech and language pathologist. Jytte lectures in the speech-language pathology and audiology programs in evidence-based practice, qualitative research methodologies, neurogenic communication disorders including aphasia, and other clinical subjects. Jytte’s research is centred around communication with people with aphasia, for example communication partner training of health professionals, but she is also interested in outcome evaluation of aphasia therapy, involvement of people with aphasia in research, and supporting access and services for people with aphasia in low- and middle-income countries. A current research project of hers is about families living with aphasia and how to make sure that they get support throughout the care pathway. Jytte is a part of the international research group Collaboration of Aphasia Trialists, where she serves in the executive committee and as chair of the working group Societal Impact and Reintegration. In this episode you will: Learn about the importance of trained healthcare providers who can communicate with people living with aphasia. Be introduced to the KomTil method of training developed in Denmark. Be inspired to consider how you might incorporate communication partner training with healthcare providers in your community. Katie: As we get started, I wondered if you could you tell our listeners exactly what is meant by communication partner training. And why is it so important for health care providers? Jytte: Thank you so much, first of all, Katie and Aphasia Access for inviting me to talk about this topic that is very close to my heart. I think that conversation communication partner training, CPT, is defined in different ways in literature. But one of the definitions that I usually stick to is that CPT is an umbrella term that covers different types of complex interventions for communication partners of people with aphasia, and possibly the person with aphasia themselves. And why is it important to healthcare professionals? I would say it's important for everyone working with a person with aphasia because you need to be able to communicate with them. No matter if you are a nurse, or a physiotherapist, or anyone in the healthcare system. The secretary on the ward that needs to communicate with people with aphasia. You need to be able to express yourself in a way that people with aphasia better understand you, but also support them in their expression so that they can say what they really want to say, or some of it at least. Katie: Absolutely. I completely agree. Being able to have conversations about your healthcare is just so important. So important. What role do speech-language pathologists play in the training of healthcare professionals? Jytte: We play a very important role. I think it's a way of opening up participation in life, including in healthcare, for people with aphasia. Since we are the professionals especially trained in being able not just to treat, but hopefully also to communicate with people with aphasia, I think we as a profession are a good way into that. But I will later in this podcast talk about how other healthcare professionals can also be CPT providers. We have tried to do that in the project I will tell you about later today. Katie: Yeah, that's so exciting. I'm really excited to talk about your work. I was wondering though if you could tell us how you got interested in the area of CPT. Jytte: Yeah, that's a good question. Mainly because so many clinicians in Denmark were interested and still are interested in CPT. I think it was back in early 2000, some of my clinical colleagues went to the Aphasia Institute in Toronto, Canada and got trained by Aura Kagan and colleagues in the Supported Conversation for Aphasia, or the SCA program. They got back to Denmark, wrote a little bit about it, told a little bit about it, but it didn't really get that traction in the beginning. Maybe we weren't ready for that. I was more or less newly qualified at that time. An evaluation of the Danish neurorehabilitation system was written up in 2011 and my now retired colleague, Lise Randrup Jensen from University of Copenhagen, was invited to evaluate and show the evidence around everything related to aphasia. What she enhanced in that evaluation was that there was moderate evidence that healthcare professionals trained to be better communication partners could have a different impact on people with aphasia’s participation. That was picked up mainly at that time by one medical doctor. I should say, this is my interpretation of everything. That medical doctor or consultant in neuro, I think it was acute neurology, she said “I want to have this implemented in this hospital. So, no matter who is working with people with aphasia here should be trained to be better communication partners.” So, I think they are very brave. They employed a clinician that was already trained at the Aphasia Institute, and they employed Lise as a researcher on this part-time. Then they started to train all their staff to do research on it and then it really started to get some traction. They not only wrote at some point a research article, but they were also invited out into different health professional communities. They wrote in the nursing magazine, and the physio magazine, and so forth. All of a sudden, so many people around the country knew about SCA specifically, and went back to their SLP asking, “Can we be trained in this method?” And, somehow, I got interested. It was very natural that I picked it up together with Lise and then we started to do research together. Katie: It's fantastic, the energy, it’s such an the organic way that it came about. That seems really authentic and people being interested. All of the different disciplines. Showcasing and getting work out in interdisciplinary audiences is so important. Yeah, I love that story. Thanks for sharing. So, I'd like to get into a little more of the details. You've taken a lead role in training healthcare providers in Denmark, and I was hoping you could talk us through a little bit about how the training was developed and the philosophy behind your training. Jytte: Yeah, as I mentioned previously, it was a lot of SCA going on, and there still is in Denmark. So many of us, Danish clinicians and researchers, have been to Toronto and gotten SCA training. But we got back with a material developed in a Canadian context with English speaking videos, and we had to do some adaption. But it was hard to know what could we change and still call it SCA. So, at some point, I was invited into a project at the local hospital in Espia, where I live on the west coast of Denmark. It was really a nurse at the acute ward there that also had read about SCA, and she went to one of the project people there saying, “I think we should be taught some kind of CPT.” And then it started. So, our project man, he was very great at getting people together. Very funnily, he knew what SCA and CPT were because his daughter studied to be an SLP and wrote her master thesis about it. Lots of clinicians from that hospital, from the neurorehabilitation unit that the acute hospital usually would send their patients to, and then to the five surrounding municipalities that got the people with aphasia out where they lived afterwards. They got together, some researchers, me as an SLP researcher, and a colleague from public health. It wouldn’t be right to say we were doing something new. So, we were standing on the shoulders of the giants, like Aura Kagan and Nina Simmons-Mackie, and other people that have worked before with CPT. We invited healthcare professionals from all stages throughout the care pathway, but definitely also people with aphasia and significant others. At first, we started with studying, “What is going on here? How do you communicate in this area of Denmark? How does the transfer happen between hospitals and from hospitals out into community care?” We got some ideas on what could be better. But then we again invited people in to do some co-design and co-development with us. So, that was how it all started. But you also asked about the philosophy, Katie. Katie: That's alright. Well, before we get into that, I know many of them might, but I'm not sure if all of our listeners know what you mean by co-design. Jytte: Yeah, I'm not sure that I know that either, Katie. Katie: Well, how are you thinking of it? Jytte: I claim I use co-design in many of the things I do. By that, I mean we invite all of the relevant stakeholders in. Well not all, but at least some of the relevant stakeholders for whatever we were going to develop. In this case, it was a CPT program, but it was also some support materials, and we developed a few other things I can talk about later. We have done workshops with them [stakeholders] asking them different questions, very open questions in the beginning. Our overarching goal from the beginning was not to create CPT, or communication partner training. It was to create cohesiveness throughout the healthcare system. It would be a good idea, we assumed, that all the way from when you were hospitalized until you finished your treatment out in your own home or in the community, that you would meet staff that knew what aphasia was, that knew how to communicate with aphasia, that used some of the same support materials. So, we asked them very openly, “How could that look? What is needed for that to be a reality?” We were quite sure from the beginning that some training had to take place. So, really, the CPT program called KomTil that we developed was a part of answering that more broad question. Katie: Yeah, it's really a beautiful way to get something to work. I think that's why it’s been so successful in your country, because you really brought it in from the ground up. People are truly interested, and then getting input from the health providers who are going to be using it, and the stakeholders, people with aphasia, family members. Thank you for sharing. I think that it's certainly something that's easier said than done, and you're showing us that it can be done, so thank you. So, did you want to remark on the philosophy? Jytte: Yeah. So, I'm sitting here with the sheet in front of me. I think you will all be able to have a look at it and Katie will talk more about that later, where you can find it. But we have what we call our strategies and tools. There is a drawing, and it really looks like a dart board. There is a bullseye in the middle, and that is what is really most important to this training. It's also important for me to tell you that it has been people with aphasia and their family members that have told us what they found was most important. That strategy is called “person-to-person”. With that, we mean that in any kind of healthcare contact, it's important that both the person with aphasia, but also the healthcare professionals, remember that it's two humans really talking together. It's not about if you have aphasia or not, or if you are a nurse or not, it's about two people having to communicate. So, you need to try to work on creating a relationship. Be respectful to each other coming from different systems and with different points of view. The last point is to be honest about what you don't know or what you don't understand. When you don't understand what the person with aphasia is saying, instead of pretending, it's okay to say, “I'm sorry, I don't understand what you’re saying.” So, that's the bullseye of our figure. The next circle around the bullseye is parted into two, and one is called “your court”, like you are part of the tennis court. Those are the strategies that you can do yourself without making too much effort. So, you could slow down your speech rate. You could have a natural tone of voice, knowing that you are speaking to an adult competent person. Emphasize key words in your oral speech. Have short sentences, yes-no questions, one question at a time. So, that simple communication advice that many of us are using with clients, but also advise other people to use with people with aphasia. Also take your responsibility in the communication because you know, or are being taught, in the CPT program that you really need to not control but be responsible for moving forward the conversation and providing support. Then the other half of that middle circle is “know your co-player”. So, know who is on the other side of the court. Try to think about, “Who is it that you are speaking with? How must it be to have aphasia and not be able to express yourself in the way that you would like to feel that you are competent and intelligent?” It’s as Aura Kagan always says, “the aphasia is masking who you are, and your competencies”. Make sure that there is enough time for the person with aphasia to give their response if you ask a question, or if they want to formulate something. Also, make sure that you understand each other. Try to check if, “What I understood you said was this and that. Is that true?” or “What I tried to say before was this and that, are you with me?” Then there is the outer ring, divided into four parts and we call them “strategies”. They may be extra. Some of them are quite natural in communication and some of them are not so much. One tool could be “pointing”, so be more intentional about when you point at your body, towards things, and at the person you're communicating with. The next one is also rather natural. Try to use “facial expressions, gestures, body language”, and be intentional about it. Like right now as we are talking Katie, my hands are everywhere but it doesn't mean anything. But I could use my hands to be more precise in underpinning what I'm saying, and the same with my facial expression. Then the last two tools are the ones that are a bit more unnatural. “Write down keywords”. So, have pen and paper ready and write the keywords in whatever you were talking about. We’re talking about tools, Katie, then I would write down tools on this sheet of paper. You could also use keywords if you want people to point at different choices you give them. So, it can work as a support for what you say, but it can also be something you write down based on what the person with aphasia says to make sure, “Have I understood you right?” In the written keywords section, we also have drawings. So, we could draw to show something more visually. The last one is “pictures” or any kind of pictorial support. Especially the last two things, written keywords, drawings, and pictures, need some kind of preparation. You need to have pen and paper with you. You need to be willing to draw. Many people say to me, “But I don’t draw, and people can’t see what I’m drawing.” Also, the pictures. Either you need to prepare the conversation and have pictures with you, or have a tablet or a smartphone, or have physical pictures that you can point at and talk about. So that was a long explanation about the KomTil. Katie: Beautiful. So, this KomTil graphic will be in the show notes. The reference will be there as well as the articles that Jytte’s talking about, so please check them out. I think brings [these strategies] to an intentional and simplified way. It really makes it make sense, breaking those things up into different areas. Wow, fantastic. Jytte: Can I add one thing, Katie? Katie: Of course. Jytte: The idea with this model was also like, “Could we start in the middle, and actually solve or bridge over some of the communication challenges between us and the person with aphasia by just really being present and trying to build a strong relationship?” Or maybe a little bit more is needed. Maybe I need to slow down and do a little instead of starting in the outer circle with drawing or pictures because maybe it’s not needed. You should use it if it's needed. If not, no need to do it. Katie: Yeah. That's so important. I was actually earlier this week having a conversation with our local aphasia support group. We were talking about how to talk with your health care providers, and I think they would agree that being treated like a person and having that relationship is really the place to start. Well, you all have not only developed this, but you also are training different healthcare providers, speech pathologists, or other disciplines on how to train other people on communication partner training. So, could you talk to us about what's important about consistency in this program? Also, how does somebody become a trainer? Jytte: Yes. So as SCA, that also has a train-the-trainer model, we have made the same. Because it's really not good to develop something and then keep all the knowledge within that small group. We wanted KomTil to have its own life, so that people could get trained as trainers and then go out into their workplaces and train their colleagues. That would also mean that you would have KomTil trainers in many places with specific competencies that could underpin implementation, train new staff, do some refresher training. So, that was really the intention from the beginning. For this to be sustainable, we need a train-the-trainer model. This is then a little bit different compared to most other CPT programs. We have chosen together with the co-designers we had in the beginning that it was not only SLPs that could be KomTil trainers. Our very first group of KomTil trainers when we were still a research and development project was a good group of SLPs, but also OTs and PTs. We had a few nurses, we had a nursing assistant. I think that is almost what I'm most proud about, especially when I look at those trainers today. They got trained, I think it was back in 2018 we did that. Here where I live, the local hospital is just down the road. When I speak with that nursing assistant and nurse on the acute neuro ward and listen to them still doing the training, still inspiring their colleagues, I get inspired, and I get very proud as well. Katie: What a beautiful thing. I mean, that's just oh wow! Jytte: Yeah. Also, I guess it's different because in the beginning, it was very much assumed you had to know a lot about aphasia to be able to train CPT. But I think we have cut it down to a model. Yes, there is information about training, but what is really needed in order to be a good communication partner is not necessarily a lot of knowledge about aphasia. Many of them know something because they work with people with aphasia, but it's a lot about how best to communicate with people with aphasia, and then training in it. So, really just practice, practice, practice. We have continued using that model. At the moment, I'm training a group together with a colleague in Iceland online. I also train with another colleague, some Danish healthcare professionals, and again, not just SLPs. We have a nursing assistant, nurse, and special education teacher onboard in our current group. So, the model is like that. You are also asking,... /episode/index/show/aphasiaaccess/id/25889661

Episode #98: An Aphasia Journey Through Linguistics, Neuroplasticity, Language Treatment, Counseling, and Quality of Life: A Conversation with Chaleece Sandberg 01/24/2023

Episode #98: An Aphasia Journey Through Linguistics, Neuroplasticity, Language Treatment, Counseling, and Quality of Life: A Conversation with Chaleece Sandberg Welcome to this edition of Aphasia Access Conversations, a series of conversations about topics in aphasia that focus on the LPAA model. My name is Janet Patterson, and I am Research Speech-Language Pathologist at the VA Northern California Health Care System in Martinez CA. These Show Notes follow the conversation between Dr. Chaleece Sandberg and myself, but are not an exact transcript of the conversation. Dr. Chaleece Sandberg is Associate Professor in the Department of Communication Sciences and Disorders in the College of Health and Human Development at Penn State University. She directs the Semantics, Aphasia, and Neural Dynamics Laboratory (SANDLab), which focuses on finding ways of optimizing language therapy for adult language disorders, with a primary interest in aphasia. Specifically, work in the SANDLab explores the neuroplastic processes that take place during successful therapy and how to enhance these processes. Additionally, SandLab work explores how cortical reorganization due to aging affects the way we interpret the cortical reorganization that results from language therapy. In today’s episode you will hear about: the importance of impairment-based treatment in a person-centered approach to aphasia therapy, the role of linguistic complexity in selecting treatment stimuli and supporting generalization, how speech-language pathologists can add aspects of counseling to treatment activities. Share Dr. Janet Patterson: Welcome to this edition of Aphasia Access Conversations, a series of conversations about community aphasia programs that follow the LPAA model. My name is Janet Patterson, and I am a Research Speech-Language Pathologist at the VA Northern California Health Care System in Martinez, California. Today, I am delighted to be speaking with my friend and research colleague, Dr. Chaleece Sandberg. Dr. Sandberg is associate professor in the Department of Communication Sciences and Disorders in the College of Health and Human Development at Penn State University. At Penn State, she directs the SANDLab, that is the Semantics, Aphasia and Neural Dynamics Laboratory. Efforts in the SANDLab are aimed at finding ways of optimizing language therapy for adults with language disorders, with a primary interest in aphasia. Specifically, the lab explores the neuroplastic processes that take place during successful therapy and how to enhance these processes. Additionally, the lab work explores how cortical reorganization due to aging affects the way we interpret the cortical reorganization that results from language therapy. In 2022, Chaleece 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 this well-deserved honor, Chaleece. 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 Chaleece, to Aphasia Access Conversations, Dr. Chaleece Sandberg: Thank you so much for such a lovely introduction. I'm so glad to be here doing this with you and I'm so thankful to the Tavistock Trust for this recognition. Janet: Chaleece, as we said, you were named a Tavistock Trust Distinguished Scholar USA for 2022 and join a talented and dedicated group of individuals. How has the Tavistock award influenced your work, both your clinical and your research efforts in aphasia. Chaleece: So, first of all, I am so incredibly honored to be recognized as belonging to such an amazing group of scholars. These are definitely people that I admire, and I look up to and I want to be more like, and so receiving this award is not only supporting my ability to push some ideas forward that I've been having, but it's also giving me more confidence to go all in and make quality of life, an even larger focus in my teaching and research. Janet: That is terrific to hear, because I think quality of life is so very important for all of us. We sometimes forget that idea when we get focused on our treatment or specific treatment protocol. In preparing for this interview Chaleece, I read several of your publications, including your work in treatment for lexical retrieval, and the Theory of Complexity. Would you briefly describe this theory and your work in this area? Chaleece: I'd love to. The Complexity Account of Treatment Efficacy was introduced by Cindy Thompson, who is actually my research grandma, Lewis Shapiro and Swathi Kiran, who was my Ph.D. mentor. What they were finding was that while they were doing the Treatment of Underlying Forms, which is a treatment that supports sentence processing, when you train more complex sentence structures, like object class, something like, “It was the porcupine who the beaver hit”, right, you're going to get generalization to not only other object clefts, but simpler structures, like WH questions, so something like, “Who did the beaver hit?” Using this logic, Swathi started exploring the effects of semantically based therapies for word retrieval and found that training atypical words in a category promotes generalization to typical words in that category. The idea is that you're basically training this wider breadth of information that applies to more items. In the case of typicality, you're training semantic features that are really characteristic of these atypical items, like that “a penguin doesn't fly but swims”, and that you're also training these really typical features that apply to everything in that category, like, “a penguin lays eggs like most other birds”. In my work, I've extended this logic to training abstract words. Now with abstract words the mechanism of generalization is slightly different. Rather than words sharing semantic features, they share associations. So, we train words in thematic categories, like “hospital” and “courthouse”, where there are these strong associative links between abstract words like “diagnosis”, and concrete words like “doctor”. The reason that it's more beneficial to train abstract words rather than concrete words is because they have a wider range of these associative links, so they can activate more concepts when you get that spreading activation within the semantic system. We've started calling it Abstract Semantic Associative Network Training for that reason, or it's AbSANT for short. Janet: I think that is so fascinating. It makes sense because you're looking at a way to optimize therapy, which is what the SANDLab is all about. How can we, from a theoretical perspective and with data to support what we're doing, how can we be as efficient as possible in achieving the outcome that we would like to have for a person with aphasia? I think it's a perfect example of theoretically based treatment. That leads me though, to the next question to say, I love your research. And I love that it's taken however many years and starting with grandma, Cindy and then Swathi, and now you. That's a lot of effort and a lot of work that clinicians don't have. The theory is so powerful, so I'd like to ask you, what are your thoughts on actions that clinicians might take to easily incorporate these treatment principles, or this treatment, into their clinical activities. Chaleece: I've tried to really consider clinicians and keep clinicians in mind when I've been thinking about AbSANT. One thing that I've done is, I've made absent available for free on my lab website (SANDLab). There's also a tutorial published in Perspectives of the ASHA Special Interest Groups. And the idea is that that's kind of an easy to go to for clinicians. And even though we've only actually used a couple of categories in our research, so we focused on courthouse and hospital, we actually did norming on I think it's 17 categories, thematic categories, like football and holidays. And all of those words are available on the website, I also don't see why you can't create your own categories that are going to be personally relevant for your client. One of our AbSANT clients that we had in our research study, after they were done, the husband wanted to continue to work with his wife on words for the holidays, actually. And so we talked about it, and he came up with some words in the category Christmas, that would be good targets, and they went off and used it. And it helped. They were very happy. Janet: Kudos to you, Chaleece, for doing it like this. What you just described, about a person sitting in therapy and using your words and what you had created, and then going off and creating their own with your assistance, that is exactly what I think should be happening, as we think about therapy. That feeds quality of life, that feeds a person's ability to move back into whatever they want their life to be. Kudos to you for making this freely available to clinicians. They don't have to go digging into research papers or into journals to find and to piece together your work, it's there on your website. By the way, the link to your lab and this information will appear in the Show Notes that accompany this recording. So, thank you for that. I appreciate it. And I know clinicians will as well, Chaleece: I understand being pressed for time, and I did want to make this as easy and accessible as I could Janet: Chaleece, at the heart of your work in aphasia, as we just mentioned a few minutes ago has been optimizing treatment. One of your research interests supporting this direction, has been examining the neurological mechanisms that underlie behavioral change following treatment. Conducting research on this topic is challenging for many, many reasons. Yet, I think it's very important to aphasiology as we seek to understand the elements of a treatment protocol, and how the brain changes in response to stimulation. So, with that large question and that large research area, what have you learned from your work in this area? Chaleece: You are right, it is a very challenging area to work in. One thing that is heartening is that my work seems to agree with some of the heavy hitters out there who are doing this work on a much larger scale. I think that in order to really get at the root of these questions, we do need these really large-scale studies across different sites that are going to be able to gather enough data so that we understand fully what's happening. But basically, it seems like no matter how chronic the person is, there is neuroplasticity related to treatment gains. We still don't really have a definitive answer regarding things like which hemisphere is better? Or is increased or decreased activation better? But it's looking like the answer is actually going to be quite nuanced and related to individual variability, which again, speaks to this idea that the more data the better. Luckily, there is a working group in the Collaboration of Aphasia Trialists, or CATS, that's working on this question. I am a part of that group and very honored to be a part of that group and contributing to this work. I do have some results from a pilot study that I did as a doc student. We found that left inferior frontal gyrus pars triangularis, so basically, Broca's Area appeared to be especially important for the AbSANT outcomes. We also found that when we saw generalization from the abstract to the concrete words, that areas that are normally responsible for concrete word retrieval, were being activated after therapy more so than they were before therapy. That's some nice evidence that generalization is actually affecting areas of the brain that are responsible for those items that are being generalized to. I have yet to analyze the data from my current study but stay tuned. Janet: Oh, we will. I think that there's a large body of data, as you said, from other people who've done larger studies, and lots of people have been focused on this question for a while, and you are as well. It's a bit daunting for clinicians, again, to think about how to wrap your head around the idea and the evidence. We all believe that the brain is changing, but to wrap your head around the evidence that says, “Well, how is this happening?” and, “What can I do that will facilitate it happening a little bit more quickly or a little bit more thoroughly?” So, I realize I'm asking you a speculative question that's sort of out there, but I'm going to ask it anyway. What are some of the ideas from your work that clinicians may find useful to think about on Monday morning, when they walk in to interact with their clients who have aphasia, and their family members and care partners. Chaleece: I think one of the things that I really would like to underline is don't be afraid to challenge your clients. We actually learn better when we're challenged, and learning is what's going to cause those changes in the brain. Probably the most important thing that I would like for clinicians to take away from my AbSANT work is that it's worthwhile and not impossible to work on abstract word retrieval using a semantically based approach. Abstract words are so important for natural conversation. Training them seems to really help support retrieval of concrete words as well, and so you get more bang for your buck. I found that people, especially those with a little bit milder aphasia who are up for the challenge, really enjoy the metalinguistic discussion, and the chance to defend these really strong opinions that people have about the personal meanings of abstract words. And, again, the most important thing in terms of l the neural imaging in the neuroplasticity is that the brain always has the ability to change. I realize that our clients are later in life, they've had a stroke, maybe they're in the chronic phase of recovery, and they can still show neuroplastic changes. One of my highest achievers, in my study, when I was a doctoral student, both behaviorally and neurophysiologically, one of the people who showed the most neurological changes was 20 years post stroke. Janet: That's amazing. When you talk about abstract language, it makes me think that so much of what we do, or at least as I look back on a lot of the treatments that we do, single words or visual nouns or concrete nouns, very simple, sometimes we say functional words. But then you step aside and listen to people talk and so much of what people's conversation contains is nonliteral words and abstract words. We don't talk like the words that we're using in therapy, and it makes perfect sense then, the way you're approaching this challenge of aphasia, to try to make your work more like what people with aphasia are going to experience during conversation. It's a big problem and a big challenge, but I think you're up to it, and I'm looking forward to seeing some of more of your work on AbSANT. Especially since it's such a challenging area of work. I appreciate you giving us specific suggestions of things that we might do Monday morning when we see our patients. So, this is not just a conversation and it's not just another academic lecture in how we think about treatment, but it has some very important real world applications for us. Thanks so much for that piece. I'd like to switch for a few minutes, Chaleece, and talk to you about your interest and work in bilingual aphasia. How did you become interested in this line of work? And more importantly, what have you learned from your work in this area. Chaleece: So, I've always been interested in learning other languages. I have actually attempted to learn a few languages and have not been that successful. But one thing that I realized while trying to learn these other languages is that I was really intrigued by the way languages work. As you're learning another language, you start to really kind of put the pieces together and see kind of under the hood of what's actually happening. And so, I got my undergraduate degree in linguistics, and I think that this kind of fascination with how languages work also partly fueled my interest in aphasia in the first place. I remember sitting in my language in the brain class, and a light bulb went off, I was like, “Oh, my gosh, this is exactly what I want to study!” This idea that this full language system that was completely developed, all of a sudden can get destroyed by damage to particular areas. And so, you know, that kind of set the stage for me wanting to study aphasia. And then when I got into Swathi’s lab and she was doing bilingual research, I was so excited. I was like, “Oh, I am totally on board with this”. So, I volunteered for all the bilingual studies that I could, actually not speaking any other languages myself, but realized that I can still research other languages, even if I don't speak them. That was kind of an “aha” moment for me, which was very nice. During my Ph.D., I got to know Theresa Gray, who was a fellow doc student, and she and I became really good friends. After graduation, we immediately began a collaboration. This was good news for me because I had gotten a job at Penn State, and we're in Central PA and there is not a huge bilingual population there. But there is an excellent center for language science at Penn State started by Judy Cole, Janet van Hell and Carol Miller. That has really helped to support my efforts in understanding bilingualism in general, and bilingual aphasia. So, the work that Teresa and I have done together has actually been really focused on getting culturally and linguistically appropriate materials out to bilingual clinicians. That was where we saw that we could do kind of the most good in this area. But along the way, we found some really interesting patterns related to cross language generalization and language dominance and cognitive control. We've also had some really interesting insights from our students who've been working on these projects who have just made comments about the adequacy of the assessments that we're using. And so we're really starting to think about how that's going to affect what we know about people's languages that they speak as we're trying to figure out, you know, what's going on, after a stroke with these different languages. And it also just kind of brings to the surface, that there are so many limiting factors for individuals who don't speak English as their first language or don't speak English at all. There's such an enormous service disparity, at least in the United States, and work in aphasia research has been so English centric, that it's created these major barriers to having adequate services. But luckily, we're starting to kind of get on the ball a little bit, this field is receiving a lot more attention. There are some really great researchers on the case. I've been to some recent conferences where there have been a lot of great presentations. The Saffran Conference was dedicated to this idea, there was a great workshop by Jose Centeno. At the Academy of Aphasia, there were some really great presentations there on this topic. So I feel like we're, we're moving forward in trying to close the gap in services for people who are bilingual. JANET: I agree with you on that. And many times, it's also on the clinician. Clinicians might be bilingual themselves, but they might not be. How can you best support the clinicians who does not share a language with the client or the family members yet still has to serve that individual? It's, again, another challenging area that you've undertaken the study. You are busy, I bet. So in addition to everything you've been doing over all these years, I mean, the... /episode/index/show/aphasiaaccess/id/25668762

Episode #97: Aphasia Is a Family Thing: A Conversation with Marie-Christine Hallé 01/11/2023

Episode #97: Aphasia Is a Family Thing: A Conversation with Marie-Christine Hallé 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 Marie-Christine Hallé about her work on including significant others in aphasia rehabilitation, communication partner training, and knowledge translation. Gap Areas This episode focuses on Gap Area #4, markedly insufficient training and education of family or carers regarding aphasia and communication strategies; and Gap Area #9, lack of services specifically for family members of people with aphasia across the continuum of care. Guest info Dr. Hallé is a lecturer at the University of Quebec at Trois-Rivières and the coordinator of SAPPA, a service for significant others of people with aphasia in Quebec Province, Canada. She completed a PhD in speech language pathology at University of Montreal, and a postdoctoral fellowship in knowledge translation at McGill University. Her work aims to support the inclusion of significant others in aphasia rehabilitation, as well as communication partner training. To promote the uptake of these best practices, she studies professional competency development among speech language pathology students with respect to evidence-based practice and counseling, as well as professional practice changes among clinicians. She is a recipient of the 2022 Tavistock Trust for Aphasia Distinguished Scholar Award. Listener Take-aways In today’s episode you will: Learn about changes in family relationships due to post-stroke aphasia. Understand how speech-language pathologists can support significant others of those with aphasia across the continuum of care. Identify barriers and facilitators to implementing communication partner training. 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 Dr. Marie-Christine Hallé, who was selected as a 2022 Tavistock Trust for Aphasia Distinguished Scholar, USA and Canada. In this episode, we'll be discussing Dr. Hallé’s research on significant others’ experiences of post-stroke aphasia, communication partner training, and knowledge translation. Dr. Hallé is a lecturer at the University of Quebec at Trois-Rivières and the coordinator of SAPPA, a service for significant others of people with aphasia in Quebec Province, Canada. She completed a PhD in speech language pathology at University of Montreal, and a postdoctoral fellowship in knowledge translation at McGill University. Her work aims to support the inclusion of significant others in aphasia rehabilitation, as well as communication partner training. To promote the uptake of these best practices, she studies professional competency development among speech language pathology students with respect to evidence-based practice and counseling, as well as professional practice changes among clinicians. Marie-Christine Hallé, welcome to the Aphasia Access podcast. It's great to have you here. Marie-Christine Hallé Thank you. Lyssa Rome I wanted to start, as we often do, with asking you about whether you've had any “aha” moments—significant experiences that were critical in your development as a speech language pathologist? Marie-Christine Hallé Great question. In fact, I have an “aha” moment, which is also kind of an “uh-oh” moment—like the perception of a problem. When I first began to work as a speech language pathologist in rehabilitation, I was very interested and motivated to work with people with aphasia and their significant others as well. I had completed my master’s in speech language pathology, during which I had done a research project. I had read transcripts and analyzed interviews of significant others of people with aphasia. It raised my awareness regarding what significant others can go through—the challenges that they can have when communicating with the person with aphasia. So I was really motivated to try to make a difference in their lives, to help them to better communicate with one another. But in my clinical practice, I had the feeling that I didn't actually succeed to go there. I was expecting to have these conversations regarding how to help them communicate with one another. But I was not seeing significant others that frequently. Or when I was seeing them, I sometimes had the feeling that the conversation I had with them was—not superficial—but I didn't get to the communication challenge I was expecting that I would get. So this was kind of my “uh-oh” moment that motivated me to do a PhD. Because at this point, I was like, maybe we don't need to develop a new intervention, targeting significant others, maybe we need to better understand what is the experience of significant others? What are they what they are going through. And also to know about the experiences of speech language therapists as well. And if we better understand both experiences and how they fit with one another, maybe we can better try to actually help them and have the conversation I was expecting to have with them. Lyssa Rome That makes a lot of sense. I think a lot of us in clinical work find our ideals don't always match up with the reality. Right? And that specific, “uh-oh”/”aha” moment, brings us to the gap areas that we've been trying to highlight in the podcast. These are the gap areas that were identified in the State of Aphasia report by Nina Simmons-Mackie that was published in 2018. In our conversation in this episode, we're going to be focusing on two gap areas that you've identified here. The first one is Gap Area #4, which is markedly insufficient training and education of family or carers regarding aphasia and communication strategies. And the second is Gap Area #9: lack of services specifically for family members of people with aphasia across the continuum of care. So obviously, those areas are important to you and your work. I wanted to continue by talking about how that “uh-oh” moment led you into some early papers, and early research that you did, looking at how aphasia changed relationships between people with aphasia and their care partners or significant others, and specifically, between mothers and daughters, where the mothers had post-stroke aphasia. So can you tell us a little bit about that research? Marie-Christine Hallé Yes. This research was conducted with four adult daughters of mothers who had aphasia, and we try to look at their relationships. We have identified how adult daughters helped their mothers and the different types of behavior that they could have. We identified how the type of behavior the daughter had was related to how daughters perceived their mothers. So daughters could perceive their mothers as vulnerable or as having difficulty. They could also perceive her as having abilities. And sometimes when the major was seeing the mother as someone with difficulty or someone vulnerable, daughters would help their mother in a protective manner by doing things. Not at their place, but on their behalf or doing things for them. Like calling to take some appointment with a doctor, or sometimes censoring themselves, like avoiding some conversation. Like a daughter is saying that she had marital issue and she didn't want to worry her mother. So she would avoid having this discussion with her mother. And the opposite, when daughters perceived more their mothers as having abilities, they would adopt trusting behavior. So encouraging their mothers to do things on their own, even if they may have some difficulty. So a daughter saying that she went to the bank with her mother, but she let her mother go and meet with a bank teller. Even if she saw her mom having some difficulties, finding her words, she let her mother try by herself. Or whenever they were using some communication strategies, recognizing that the mother had something to say. They were recognizing their competency. So that was a way of trusting her. So we we kind of saw different type of relational scenarios, sometimes the mother could react by being satisfied, or sometimes being dissatisfied by the daughter's reaction. But we also identified how aphasia seem to complexify the adjustment to the relationship, because sometimes daughters seemed to avoid communication to solve their problem. I have an example in mind of a daughter, who in the first place, kind of trusted her mother. She was living with her. She trusted her mother by going by herself to run some errands. So she left her mother alone in her house. So the daughter could go by herself go run some errands. But when she came back, she saw her mother was worried or crying. So she told herself—the daughter, she didn't speak about it with her mom, but she told herself, “I left my mother home, when I came back, she felt worried, I shouldn't do that again. Next time, I need to go to the grocery I’ll wait for my mom to be somewhere else at an appointment. So I won't leave her alone.” So instead of having an open discussion with the mother, asking, “What was going on? Are you worried? What could we do next time?”, she decided by herself not to solve this problem through communication. So it shows how aphasia can make this adjustment more complex, because you need to adjust to life with post-stroke aphasia, you may need to take some new roles and responsibilities, but because of aphasia, you may kind of avoid the use of communication to actually solve this problem. Lyssa Rome It sounds like some of those trusting behaviors really had to do with recognizing the underlying competency of the person with aphasia, these mothers with aphasia, and maybe also their abilities. I'm wondering how, recognizing that and sort of seeing these different kinds of perceptions that the daughters had about their mothers and the mothers had about their daughters and their level of satisfaction or dissatisfaction—how did that influence your own focus in your work on how speech language pathologists involve significant others in aphasia care? Marie-Christine Hallé I think it had the influence about how important it can be for us as speech language pathologists to involve significant others to better communicate with the person with aphasia, but to help them reveal and recognize their competency through communication. So this was kind of the the influence it had. How we can see that through communication, or that the competency that you can reveal through communication could then have influence on the relationship and domains other than communication. It can even lead to a virtuous cycle, where you communicate with one another, you see the other’s competency during communication, but that can also foster some trusting behavior that can contribute to the person's autonomy. And at the same time as a caregiver, potentially, eventually less sense of burden, because the person can do things on her own. And the more the person does things on her own, the more you can see her as competent, as having abilities. That can nourish those trusting behaviors. So it's how we can connect what happens in communication, and what happens in the relationship outside communication as well. Lyssa Rome That makes a lot of sense to me. And I think that speaks to how central communication is for and how being successful in communication can have really broad impacts in the rest of someone's life and in their relationships and their sense of self as well. You've written about these experiences that significant others have of aphasia, and how that relates to their relationship with the person with aphasia in their life, and also their relationships with rehabilitation services. And I'm curious about if you could say a little bit more about what you've learned in those areas as you continue to study significant others and their experiences of aphasia? Marie-Christine Hallé Yeah, so by studying their experience of rehabilitation, what I learned is how significant others, when they get to rehabilitation after acute care, they get there in a state of being centered on the person with aphasia. So following the hospital, they may have feared to lose the person. They were there day in, day out at the hospital to take care of her, sometimes to speak on their behalf, making sure she receives good services. And then when they arrive in rehabilitation, they are in this state of being focused on the person with aphasia. So when they meet with health professionals, when they talk with health professionals, they talk about the person with aphasia. At the same time, health professionals respond by also being focused on the person with aphasia. So this kind of put significant others in the state of seeing rehabilitation as being about the person with aphasia, not necessarily about themselves. So this even influences their expectation of rehabilitation. If, for them, rehabilitation is about the person with aphasia, they will be satisfied by rehabilitation services as long as it fulfills their needs related to their caregiver role. But what was really a revelation for me was also that what it can involve is that a significant other could speak of rehabilitation in really positive terms, saying, “Oh, that was a five star rehabilitation.” So they are very satisfied. But at the same time, they could also talk about struggling in their everyday life, needing some respite or having some challenges, maybe communicating with one another. So this is something else that I learned—how there was this possible coexistence between being satisfied with the services, but at the same time, going through some difficult stuff, and all that, because the rehabilitation was associated with the person with aphasia. Lyssa Rome Right, so they're not expecting or maybe even getting the message early on that aphasia rehabilitation is about more than just the person with aphasia, and that they also could benefit from, say, speech language pathology services, is that is that right? Is that getting it? Marie-Christine Hallé Yeah, absolutely. Lyssa Rome Where does that bring us in terms of what clinicians should know about how we can perhaps do a better job of bringing significant others in—I don't know, earlier on or in more meaningful ways—so that they feel part of the rehabilitation process. Marie-Christine Hallé So I feel there's something about the message we tell them. Yes, they can be centered or focused on the person with aphasia, but we have to think about what is the message we tell them, as well. So should we maybe be more explicit in telling them that aphasia is a family thing? That aphasia, yes, it happens to one person, but it affects all people surrounding the person. To let them know that the rehabilitation process can be about them as well. So I think there's something about these kinds of messages we tell them. We also found that sometimes it could not be comfortable for them to think about them or sometimes some of their needs could be more kind of implicit at certain points, like their need to have a better relationship or better communication with the person maybe more implicit. So those more implicit needs, maybe we can more explicitly bring them or introduce them to significant others, so that they can feel that it's legitimate to feel the those kinds of things. We can open discussion by saying we know how for some people communication can be sometimes difficult. Or sometimes you can understand one another but sometimes the topics you have in conversation are not the same topics as before. Or sometimes you can feel frustration we've heard this from other significant others. What about you? So to make it to make it okay to feel this or to help them maybe identify those needs that may be more implicit at certain points. So to open the discussion, make it okay, tell them like very clearly that it can be about them, that we can be here for them as a family unit. Lyssa Rome What you're saying rings so true to me, and the importance of letting significant others know that their experience of aphasia is also important and also worth addressing. You also then studied, I think, maybe more generally, but maybe you can tell us more about what else significant others need from the rehabilitation process? Marie-Christine Hallé Well, by studying their experience of rehabilitation, and understanding that they were focused or centered on the person with aphasia, it helped to identify a variety of needs that significant others can have. Something that can be helpful is how we can associate significant others’ different needs in relation to the different roles that they can have. So when I said that significant others associate rehabilitation with the person with aphasia, or maybe themselves as caregivers, so there have they have needs as caregivers—the need to have information, the need to have tools to help the person with aphasia, the need to have hope that things are going to be okay, or the need to be part of the rehabilitation team, the need to feel that they are considered as a partner in this rehabilitation experience. Those can be some things we have identified related to the caregiver role. But they also have other needs. Like I said earlier, when I talked about communication, so they can have the need to have a better communication with the person with aphasia, the need to have a better relationship with the person with aphasia, and this is more related to themselves being, well,l significant others or are people with an affective link with someone with aphasia. So, spouse, daughter, friend, and in their kind of role, they have their communication needs and needs to have better relationships. And when we think of significant others as patients themselves, we also identify that they have the need for support, the need to be supported, and the need for respite. So we can see this variety of needs. Some of these were previously documented before my work. But this understanding of the rehabilitation process kind of helped to classify significant others with their roles. When you think of an iceberg, some needs are kind of outside of the water, or the obvious one that you see, those related to their caregiver role. And some other needs during their rehabilitation process, maybe when I say implicit, those that are hiding. Because they don't talk about those needs, or because they are still not clear to them to formulate them as needs so that they can ask for help. Lyssa Rome Can you say a little bit more about what some of those under the surface needs were that you were able to identify in these qualitative studies that you were doing? Marie-Christine Hallé Yes. So I remember a spouse, when she was talking about communication, she... /episode/index/show/aphasiaaccess/id/25573917

Episode #96: The State of Aphasia Reports: In Conversation with Nina Simmons-Mackie and Jamie Azios 12/13/2022

Episode #96: The State of Aphasia Reports: In Conversation with Nina Simmons-Mackie and Jamie Azios Welcome to this Aphasia Access Aphasia Conversations Podcast. 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 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 today's host for today’s episode that will feature Dr. Nina Simmons-Mackie and Dr. Jamie Azios. These Show Notes accompany the conversation with Dr. Simmons-Mackie and Dr. Azios but are not a verbatim transcript. In today’s episode you will learn about: Lache Pas La Patate! and aphasia The importance of being mindful of gap areas in aphasia service and research Moving aphasia care best practices from knowledge to action Dr. Janet Patterson: Welcome to our listeners. Today I am delighted to be speaking with two individuals who are well known in the field of aphasia rehabilitation, Dr. Nina Simmons-Mackie and Dr. Jamie Azios. Nina and Jamie authored the text, Aphasia in North America, which is also known as the State of Aphasia Report. The original State of Aphasia Report was published by Aphasia Access in 2018, and contains information describing, among other topics, the frequency and demographics of aphasia and its impact on individuals and society, and aphasia services and service gaps. The State of Aphasia Report is a valuable resource for clinicians, researchers, administrators, and third-party funding agencies as we seek to craft a rehabilitation atmosphere that balances the treatment evidence base, the resource support for community aphasia groups, and the principles of client centered care. An updated State of Aphasia Report is forthcoming. Each of our Podcasts in 2021 and 2022 highlighted at least one of the gap areas in aphasia care mentioned in the original State of Aphasia Report. For more information on the original State of Aphasia report, check out Podcast Episode #62 with Dr. Liz Hoover, as she describes these ten gap areas and their impact on aphasia rehabilitation. Our conversation today takes a broader view of the aphasia service gaps, crossing all ten gap areas. My questions for Nina and Jamie will ask them to reflect on the impetus for the original State of Aphasia Report, as well as the changes that appear in the updated State of Aphasia Report. My first guest is Dr. Nina Simmons-Mackie, Professor Emeritus at Southeastern Louisiana University in Hammond, Louisiana. She has received the honors of the American Speech-Language-Hearing Association, the Louisiana Speech-Language-Hearing Association, and the Academy of Neurologic Communication Disorders and Sciences. She has published numerous articles and chapters and has had many years of clinical, academic and research experience in the area of adult aphasia. Also joining me today is Dr. Jamie H. Azios. She is the Doris B. Hawthorne Endowed Chair in the Department of Communicative Disorders at the University of Louisiana in Lafayette. Her research interests include qualitative research methodologies, understanding perspectives of people living with communication disabilities, co-constructed conversation and aphasia, and the impact of communicative environments on social participation and inclusion. She has published articles related to client centeredness, communication access, and life participation approaches to aphasia. Welcome Nina and Jamie to Aphasia Access Conversations and our discussion about the State of Aphasia Reports. Dr. Nina Simmons-Mackie: Thanks Janet, happy to be here. Dr. Jamie Azios: Really excited and honored to be here. Thanks for having us. Janet: Good, and I look forward to a great discussion and learning about the State of Aphasia Reports. Nina and Jamie, I would like to begin our chat today by asking about the original State of Aphasia Report. Many of our listeners are familiar with the book, which is a resource published by aphasia access, describing the social, financial and life quality consequences of aphasia. It contains current statistics, compelling stories, and a one-stop report to understand the state of aphasia care in North America. Nina, you were the impetus for this project and oversaw its production. How did you organize a team to think about the need for this project and envision the value it could provide to people with aphasia, clinicians, medical and rehabilitation professionals interested in aphasia, administrators, and organizations who fund aphasia research? Nina: Well Janet, when I started out in the field of aphasia, it wasn't all that difficult to review the literature on an aspect of aphasia. Now, the amount of information is just overwhelming. A kernel of an idea started forming as I was involved in a variety of projects that required a huge amount of effort gathering statistics and references to justify different types of services for aphasia. As I talked to lots of colleagues floating the idea for a comprehensive report, everybody agreed that it would be immensely helpful to pull data from diverse sources into one document. Something that could be a quick reference for grants or advocacy or program proposals. I also had some personal experiences at the time that highlighted some gaps in the system of care for aphasia. So, it really struck me as a worthwhile undertaking and the board of Aphasia Access was really supportive of the idea. We succeeded in pulling together a diverse team of experts to serve on an advisory committee to review the chapters and vet the information. The report was originally envisioned as a relatively brief statement of gaps, but as I got into the literature, I realized that it was too much for just a short paper. In fact, it turned into 163 pages in the original document published in 2018. Now, it's been about five years since this publication, and so much has happened in the aphasia world. So, we felt like it was time for an update. Next year, we hope the state of aphasia will be published. Jamie graciously agreed to join me in this project, researching and writing the updated report. Jamie, you might have some comments on the update. Jamie: Yeah, it's been so fun to work on this project with Nina. I've learned a lot from reviewing all the work in our field, and other fields too. Just getting my feet wet with the kind of experiences that Nina was talking about, pulling together this key information from so many places. It's been really challenging, but it's also been really rewarding. I didn't realize just how much has changed in the last five years. There're just some amazing things happening in terms of aphasia programming, and technology, and attempts at overcoming gaps and equity and inclusion. That's not even talking about the way stroke and aphasia care has been impacted by our worldwide pandemic. So, in terms of what's new for the update, you can expect us to hit on all those new key areas. We're really going to try to highlight both the gaps and solutions over the last five years. Janet: You both describe such an exciting project. Time flies, and things happen. And if you get busy in your own little world, sometimes you don't recognize all the things that are going on around you and all the changes. This is a great idea that you had 100 years ago Nina or maybe five or six. I'm glad Jamie, you're part of the current project. One component of the original State of Aphasia in North America is a list of ten gap areas, and you mentioned those a moment ago Jamie, gap areas in aphasia care and aphasia research. In planning our podcasts, we identified at least one of these gap areas to highlight in each interview. The ten gap areas are listed in the show notes for this conversation and discussed in Aphasia Access Podcast Episode #62 with Dr. Liz Hoover. So, Nina and Jamie as well, how did your team identify the gap areas for the original State of Aphasia Report and consider the potential for their influence on aphasia care and research? Nina: Well, really the gap areas grew directly out of the data. It was similar to a literature review. The main difference is that a typical literature review addresses a specific topic, whereas this report addressed any topic that might be useful to advocate for aphasia services. So, the sources included government statistics, some original surveys of clinicians in North America, and grey literature. Both Jamie and I have a background in qualitative research so our approach has been pretty much like qualitative research. We take a broad-based look at the literature and identify themes that seem like topics that would be important in advocating for aphasia services. And then as we dig in and begin collecting the information, the gap areas become fairly obvious. In other words, we don't just think up gap areas. They represent what is described in the aphasia literature. Jamie: We mentioned this earlier, but one of the big gap areas that's going to be recognized in the update, likely because of the impact of COVID and our shifts to engaging more digitally, is the idea the inaccessibility that people with aphasia have when it comes to using technology. We know that there has always been a digital divide, but it seems like COVID, and the loss of face-to-face contact has really widened that gap. Also widening that gap is just the fact that older people in general are using technology more and people with aphasia seem to be falling behind when compared to their age-matched peers due to these accessibility issues. The data show that people with aphasia don't text as much as other people their age, they seem to have more difficulty retaining technology skills, they have difficulty using social media platforms. We know that these things are critical for maintaining social connection. So even before COVID, we saw an increasing use of technology to access information, interaction, across a range of activities. But during COVID, and even after COVID, there's an absolute explosion. We do plan to dedicate a chapter to technology and accessibility. Janet: That's good, which leads me right into my next question for the two of you. I wonder if you would reflect on the original State of Aphasia Report and its contents and describe the changes in the information in the updated State of Aphasia Report? In particular, would you comment on the ten gap areas in the original report, and any changes in the updated report? I know you've alluded to a few of them in the last few minutes, but I'd like you if you will, take a few more minutes to be a little more specific about the nature of the gap areas, and how they're changing as we look forward to the updated State of Aphasia Report. Nina: I think the original report definitely raised an awareness of the gaps and aphasia services. Those gap areas remain relevant, so it's not like we're going to drop out gap areas. But the good news is that there's been a surge in the research and the literature relative to some of those gaps. It's typical that there is a significant lag from research and publications to implementing research into actual daily practice. This is what's interesting relative to the update, looking at how those gaps have affected actual daily practice. I think there have been two Podcasts on implementation that aphasia access has presented. One was Rob Cavanaugh talking about issues in implementation back in October, and Natalie Douglas talked about implementation science in 2021. That's significant relative to the gaps and aphasia services that we've recognized. I'll give you an example. A very recent Podcast by Sameer Ashaie addressed mental health and people living with aphasia. Mental health services was a big gap identified in the original 2018 report. Now, as we've updated the report, we find that attention to mental health and daily aphasia practice continues to be a significant gap. Not many SLPs are screening for depression and mental health professionals remain relatively uninformed about how to conduct counseling with people with aphasia. But it's been said that approximately seven or eight years is often the time it takes to move from research to implementing research in daily practice. The good news is that the literature in the area of mental health, for example, has surged since the 2018 report. We found 47 new papers on mental health and aphasia published in just the past five years. That's a typical journey that we see from a gap in service to implementation of the services and awareness of the problem and recognition of the need to change have to happen first. I think we've met that requirement of building awareness of a lot of these gap areas. Now, we have to focus on how to move from knowledge to action, meaning that SLPs and other health care professionals have to figure out how to address things like mental health in daily practice. I see the report as helping us see where we are on that road to best practices, and possibly pushing faster than the seven-to-eight-year gap in research to practice. Also, one of the gap areas was in SLPs addressing participation in daily practice. A very similar thing seems to have happened in that there's an increase in research in participation-oriented activities and therapy. But the actual practice, according to a survey that we've done recently shows that SLPs are about the same as they were in 2018, relative to actually integrating participation-oriented tasks into daily practices. I think it gives us an outline of where we have to move with this current report. Jamie: Yes, and that makes me think of some of the work that I'm working on now for the updated version in communication access, which was also a gap area in the original version of the State of Aphasia Report. Something that's really struck me is that over the last five years, so far there's been 25 new communication partner training studies in healthcare settings. That includes training healthcare providers or healthcare students that are going to be working, mostly the studies are in hospitals. That's amazing, in the past five years that's a lot of work that's been done in that area. But the other thing about that work is that has helped us learn more about the complexity of delivering an intervention like that within a health care system. A lot of the studies that have come out have also showed, by interviewing nurses and other health care staff that have been trained, that even after training healthcare providers still seem to have a really narrow understanding of what communication supports are, or there might be a burden for implementing those into their daily routine care tasks and other things that they're doing. In general, nurses have expressed more critical than positive views about the relevance and the usefulness of communication partner training. It seems like healthcare professionals know the strategies are good. They know they need to use the strategies, but then they kind of get stuck in a place of uncertainty about how to switch up when it doesn't quite go the way that they expect it to go in an interaction. I remember one of the quotes from a paper that talked about this was a nurse saying something like, “I went to use a strategy. I know it didn't work. The patient became increasingly frustrated, and I needed to use a different strategy, but I just didn't know what to do.” So, in thinking about moving forward, it's great that we see this work coming out, but it's a continued focus on shaping these programs and understanding the systems that maybe we need to approach it a little bit differently or make some adjustments so that we're really carrying through with the goal of the intervention and the outcomes are as we expect them to be and are positive. Janet: This is exactly research into practice. Isn't what you just described, Jamie, much like all the human nature that we do? When we first learn something we're not so sure about it, and we don't quite know what to do when things don't go as we anticipate. The more familiar we become, the better we are at switching up as you say or changing or keeping our goal in mind, which is exactly what I'm hoping that we can talk about and the information in this updated State of Aphasia Report will help clinicians and researchers. Nina, you mentioned two things that are something that I think about a lot and first of all, was your comment about the Podcast with Rob Cavanaugh. That was my Podcast with him, and we had a wonderful conversation. I love his ideas paying attention to, how do we actually deliver the service and are we doing what we think we are doing? And given the specific confines that we are working within, are we able to achieve the effect that we want, or do we have to make some changes? To me that seems like an important line of thinking and of research coming up about how we can make a difference given what we have or given whatever constraints we have. The other comment that you made is about depression and mental illness. I think back to my Podcast with Rebecca Hunting-Pompon and some work that she's been doing, really looking at depression and the prevalence of it among people with aphasia, and it's greater than we think. So, your comment about identifying it as a gap area and what we're going to do. How are we going to take research into practice so that we can actually address those points that you're making. Which goes into my next question to ask you, as we look forward to the future of aphasia care, and specifically, as we move from research into practice, how might you see the information in the updated State of Aphasia Report and the gap areas that you'll identify within that publication? How do you see that continuing to guide aphasia care and research? Nina: I think like the first report, the updated report will continue to raise awareness of major areas of need for people living with aphasia. I think it'll continue to serve as an advocacy tool. I know people have told me that they've pulled out parts of the original report to present to administration, and people have borrowed statistics to put into grants and things like that. So, I think those kinds of activities would continue. The report highlights areas where research is desperately needed. For example, there's a whole section on social isolation in aphasia, and we have data that's grown in the past five years verifying that this is a problem. This updated report shows that we haven't really seen very much in the way of intervention research or models for relevant interventions to address social isolation. I think as people read the report, they'll recognize areas where research is needed, and exactly where models need to look at practical ways to implement these different interventions. The report can highlight those kinds of questions so that researchers and clinicians can begin to address those questions in the next five years. It's just kind of a little push to keep the system moving along to be more efficient and more focused on addressing the needs of people living with aphasia. Jamie: You know, another thing is, I think it's going to be good as Nina said, directing researchers and clinicians into maybe some practices that we need to make sure that we incorporate whenever we're thinking about what research is valuable, and what research is worth doing and the impact of that research on the people with aphasia. Something that's coming up as maybe a new gap area or continued gap area is the idea of stakeholder engaged research and including people with aphasia in that process. That was another Podcast that we just recently, I think, had in the last month or so.... /episode/index/show/aphasiaaccess/id/25317804

Episode #95: Supporting Psychological Well-Being: A Conversation with Jasvinder Sekhon 11/22/2022

Episode #95: Supporting Psychological Well-Being: A Conversation with Jasvinder Sekhon 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 Jasvinder Sekhon about her work on enabling SLPs to feel confident and competent in counseling people with post-stroke aphasia and their families. Gap Areas This episode focuses on on Gap Area 8: Insufficient attention to depression and low mood across the continuum of care. Guest info Jasvinder Sekhon is a speech-language pathologist currently working clinically in Melbourne, Australia. Since graduating from La Trobe University in the early 1990s, Jas has worked across the continuum of care in public health services in Victoria, Australia and briefly in Singapore. Jas has been involved in the aphasia community for many years and co-convened the inaugural online Australian Aphasia Association national conference in 2021. Jas has recently completed her PhD, where she investigated counselling education that enabled SLPs to feel confident and competent using counselling to support the psychological wellbeing of individuals with aphasia and their families after stroke. Jas’ supervisors for her doctorate were Professors Jennifer Oates and Miranda Rose from La Trobe University and Professor Ian Kneebone from University Technology of Sydney. Her studies sit under the research program Optimising Mental Health and Wellbeing of the Aphasia Centre for Research Excellence and Rehabilitation. The director of this CRE is Professor Miranda Rose. Listener Take-aways In today’s episode you will: Learn about the stepped model for psychological care. Understand how speech-language pathologists can support psychological well-being for people with post-stroke aphasia. Identify the role of speech-language pathologists within an interdisciplinary team providing psychological care for people with post-stroke aphasia. Show notes edited for conciseness Lyssa Rome Welcome to the Aphasia Access 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. 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 pleased to be today's host for an episode featuring Jasvinder Sekhon. Jas is a speech language pathologist and PhD candidate at La Trobe University in Australia, and recently submitted her thesis. She currently works part time as the senior SLP at a not-for-profit community health organization in Melbourne. Her studies are part of the research program, Optimizing Mental Health and Wellbeing at the Aphasia Center for Research Excellence. She has been involved in the aphasia community in Melbourne for many years, and is a member of the Australian Aphasia Association. She co-convened the first online Australian Aphasia Association national conference in June, 2021. Today we'll be discussing Jas's research, which focuses on enabling SLPs to feel confident and competent in counseling people with post-stroke aphasia and their families. In the Aphasia Access Conversations Podcast, we've been highlighting the gap areas identified in the State of Aphasia report by Dr. Nina Simmons-Mackie. In this episode, we'll be focusing on Gap Area 8, insufficient attention to depression and low mood across the continuum of care. For more information about the gap areas, you can listen to episode number 62, with Dr. Liz Hoover, or go to the Aphasia Access website. So Jas, what led you to want to study counseling training for speech language pathologists? Jasvinder Sekhon Firstly, thank you so much to the listeners and to Lyssa for this opportunity. So my impetus for my PhD arose from observing a range of emotional issues occurring frequently in people with aphasia and their families. My clients had issues such as depression, worry, frustration, low confidence, and distress. And despite my many years of experience in the field, there were many times that I felt inadequate to respond adequately or effectively to my clients’ emotions. So in doing this research, I found that I was not alone. Survey studies of SLP practice and post-stroke aphasia rehabilitation from Australia, the US, UK, and South Africa have found that the majority of speech pathologists feel that they have low knowledge, skills, and confidence to assess or manage emotional and psychological well-being in their clients with post-stroke aphasia—and this includes their families. So working with colleagues on the stroke team who had mental health training, such as psychologists and social workers, I learned many counseling techniques, and also learned about counseling approaches and brief therapies that I thought could be useful for speech pathologists in their work. As part of my PhD studies, I've also undertaken further reading and some short courses in counseling. And I am privileged to have had the supervision of professors Miranda Rose and Jennifer Oates of La Trobe University, and Professor Ian Kneebone, from University of Technology, Sydney, who have a wealth of professional and research experience in the fields of psychology, stroke, and counseling, and speech-language pathology. Lyssa Rome So can you tell us about an experience that for you points to the value of incorporating the Life Participation Approach to Aphasia into your clinical work? Jas Jasvinder Sekhon Thanks. Yes. So early in my career, I focused on impairment-level therapies. And I think there's evidence to say that's the area that we are most trained in. But I also felt something was missing. An example was one day a client I was treating in her home, literally sent me packing. After day in, day out, I was focusing on just impairment therapy, which was the comfort area. After she threw me out and after tending to my wounded ego and reflecting, I realized that I had not found out what was meaningful to her and what she wanted out of her rehabilitation. I was being very clinician-directed, and I drove the focus of therapy. She was a busy, active, courageous single mother of two teenage girls and had stuff to do and places to go. And I was not addressing her needs, or her wants, for her to fully participate in her life. And my therapy was not aimed at helping her to achieve these life participation goals. So since then, I have pursued a holistic, biopsychosocial view of aphasia rehabilitation, and I now spend time to ensure I hear the person's story, understand their needs, wants, and goals from speech therapy, and I collaboratively set out an action plan towards meeting these goals. The assessment and management of psychological well-being is an important part of post-stroke aphasia rehabilitation and comes up often in speech therapy. I have certainly found counseling skills to be essential in my clinical practice. Lyssa Rome Thank you. I feel like most of us in clinical practice would recognize how common it is for people with aphasia to also be dealing with low mood or anxiety. Certainly I, and I think others, worry at times about whether we're really meeting the emotional needs of the people whom we're working with. I know that there's been some attention to this for years. It seems like increasingly researchers in the aphasia community have been thinking more and more about these issues and recognizing their importance. I know this last summer, and IARC, Linda Worrall’s keynote address, and other sessions focused on counseling for people with aphasia. Here in the US, ASHA has a new special interest group that's focused on counseling. And those are just two examples. I think that there are many more. I'm wondering how you see awareness of this issue changing? Jasvinder Sekhon Yeah, the emotional and psychological issues associated with communication disorders have been well-recognized for decades, as you said, and probably since the establishment of the discipline of SLP. The presence of psychological issues after stroke and aphasia is not new. The need for psychological care in post-stroke aphasia is also not new. I think what is changing is, in awareness, I guess, is who is responsible for providing psychological care in stroke services, how this is done, and when this is provided. This includes describing and defining psychological care, that is within the scope of the stroke team, which includes SLPs, and identifying training or education gaps to fulfill these expected roles, and ensuring that the provision of psychological care is ethical and effective. Thankfully, we have a model that provides evidence-based guidelines that addresses many of these questions. And this model is the stepped model for psychological care after stroke by the UK Government. Professor Ian Kneebone was part of the group that helped develop the psychological care model. Also, the work by Dr. Caroline Baker in translating the stepped model for post-stroke aphasia rehabilitation, highlighted further evidence for rehabilitation interventions specifically to prevent and treat depression in people with mild or no depression within the scope of speech language pathologists. Lyssa Rome So can you tell us a little bit more about this stepped model? Jasvinder Sekhon The stepped model for psychological care is a framework for interdisciplinary psychological care after stroke. The stepped model outlines the role and responsibility for the multidisciplinary team in the assessment and management of emotional and cognitive conditions after stroke. Central to this model is that the whole team take responsibility for the identification and management of psychological issues, with clearly established referral pathways to specialist support services in the case of more severe psychological concerns. There are four levels of the stepped model, and SLPs have a role and responsibility to support psychological care at level one and level two, for those who are experienced and trained. So at level one, there is no psychological disorder present and it’s applicable to most or all stroke survivors. So level two describes stroke survivors with mild and transient psychological issues, and can be addressed by experienced speech language pathologists with adequate training, and who are supported by clinical psychologists or neuropsychologists with special expertise in stroke. At level three, and level four, the assessment and management of psychological issues require specialist psychology staff. So the model actually helps speech-language pathologists define their scope of practice in psychological care, and this includes counseling. Lyssa Rome So that leads me to wonder about the definition of counseling within speech-language pathology. How would you how should we be thinking about it? Jasvinder Sekhon Counseling is broadly defined as a purposeful conversation arising from the intention of one person, family, or couple, to reflect on and resolve a problem with the help of another person, and in this instance, the speech-language pathologist, to assist in resolving or progressing that problem. It may be helpful to think of all counseling interventions as methods of learning. All approaches used in counseling are intended to help people change. That is, to help them think differently, to help them feel differently, to help them act differently. In other words, in the case of post-stroke aphasia, counseling aims to help the client progress their goal within their rehabilitation journey. Lyssa Rome Thank you. That's really helpful, I think, to think about it as ways to think differently, feel differently, act differently. And in service of those goals, and the goal of helping people change, I'm wondering what kinds of psychological interventions can speech-language pathologists be expected to provide? Jasvinder Sekhon So at level one, emotional and psychological issues are mild and transient and don't impact discipline-specific therapy for example, aphasia therapy. At level one, emotional problems resolve quickly, and speech pathologists, as I mentioned before, definitely can support psychological well-being at this level. Key interventions at level one, include counseling skills, such as active listening, normalizing the emotions and the experience, building effective relationships, providing psychological advice and information to family and peers to facilitate adjustment and build the skills for self-management and for autonomy with the communication issue. Goal-setting, problem-solving, peer support, motivational interviewing, managing stress, routine assessment and review of mood are also recommended at level one. Enabling peer support and positive relationships, including by providing communication partner training, aphasia choirs, and self-management workbooks are also identified at level one. Lyssa Rome You've just described a bunch of different kinds of interventions that we as SLPs might be providing. But you also said before that many SLPs don't feel confident to assess and manage psychological well-being very effectively. So I'm wondering if you could say a little bit more about that. Jasvinder Sekhon Yeah, we conducted a systematic review of SLP counseling education in post-stroke aphasia, and found that most universities reported to provide counseling education to SLP students. However, few actually provided counseling education specifically for supporting the psychological well-being in post-stroke aphasia. So it's possible that many speech pathologists may have very little preparation to address the significant emotional and mood issues in people with aphasia after stroke. We found after speech pathology qualifications, speech pathologists reported a range of counseling education that they received. Some, again, with no training, up to PhD qualifications in counseling. But speech pathologists did report that they received counseling education from working in stroke care—so from their peers in stroke care—and also, many speech pathologists sought further education, professional development, in-services from external sources, counseling courses. So counseling, education and experience, we found, was positively correlated with feeling more knowledgeable, more skilled, and confident for supporting psychological well-being in post-stroke aphasia rehabilitation. Lyssa Rome With that in mind, and in order to help prepare SLPs to fill that role as you just were describing, you created a counseling education program. Can you tell me a little bit more about that? Jasvinder Sekhon We designed a counseling education program based on our systematic review of counseling education that speech pathologists currently receive and the stepped model for psychological care after stroke. Our program consisted of seven hours of self-paced learning and it was an online module and a workshop which was three hours, where clinicians practiced their counseling skills with peers. Topics included speech pathologists’ role and responsibilities for supporting psychological well-being in post-stroke aphasia rehabilitation within that multidisciplinary team model and within the stepped model for psychological care. We included counseling theory and foundations of counseling skills, and how to apply these to speech pathology practice and specifically to the issues that we were describing common to post-stroke aphasia rehabilitation. We trialed our counseling education program with 49 practicing speech pathologists in Australia. We measured these outcomes before and after the training program, and also after five weeks of completing the training to see if the effects were maintained. Thankfully, the results of the trial were positive and we did find significant and large effects of the program on speech pathologists’ self-efficacy and self-rated competency for counseling in post-stroke aphasia. Also, these effects were maintained at five weeks follow-up for both of the outcomes. Lyssa Rome That's so exciting. So for those of us who didn't get to participate in your research and who would like to get started now, or would like to brush up on our counseling skills, or deepen our counseling skills, what resources can I and other speech-language pathologists access to help them feel more confident in this area. Jasvinder Sekhon If you have access to stroke mental health professionals, for example, psychologists or social workers, have a chat with them and organize some training in those level one interventions that were described. Maybe discuss sourcing counseling education from external providers, or your team. Interventions that you could look at sourcing for these inservices could include problem-solving and solution-focused approaches, motivational interviewing, counseling training, foundation counseling skills, for example, behavioral activation, and person-centered counseling. Family sensitive and family therapeutic approaches are also vital and support speech pathologists to provide that level one intervention. There may be short courses for supporting mental health after stroke available via your National Stroke Association or via ASHA. The new special interest group that you mentioned would also be a fabulous resource for that peer support and professional development. For example, Speech Pathology Australia has teamed up with a local national mental health organization, called Lifeline Australia, to run counseling courses for speech pathologists. As we have preliminary evidence that our online counseling education program was feasible and effective for improving speech pathologists’ confidence for counseling to support psychological well-being in post-stroke aphasia, we are seeking further funding to make this program into a short professional development course for SLPs, and hopefully it will be widely available for anyone who would like to take on this further education. Lyssa Rome I look forward to that. So when speech-language pathologists are better prepared to address the psychological well-being for our clients who have aphasia, how will our practice look different? Jasvinder Sekhon It's a great question and a big question. I think ideally, speech pathologists will feel prepared and confident in their role and feel prepared and knowledgeable in their scope of practice in counseling. I think practice guidelines for counseling will be clearer, and clearer in defining scope and boundaries, skills required, and processes for that interdisciplinary practice when addressing the psychological wellbeing of people with aphasia and their families after stroke. Speech pathologists will be able to conduct appropriate screening for social and psychological issues and to know when and how and who to refer to as required. I think speech pathologists who are appropriately trained will also be able to use a range of counseling skills to support the client to learn communication strategies for participating in conversations relating to all aspects of their lives, as well as strategies for supporting social and psychological well-being. These include strategies for maintaining social networks, building new networks with support from peers,... /episode/index/show/aphasiaaccess/id/25000296

Episode #94: Measuring What Matters and Operationalizing Outcome: A Conversation with Sarah J. Wallace 11/09/2022

Episode #94: Measuring What Matters and Operationalizing Outcome: A Conversation with Sarah J. Wallace Welcome to this Aphasia Access Aphasia Conversations Podcast. 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 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 today’s episode that will feature Dr. Sarah J. Wallace from Queensland, Australia. These Show Notes accompany the conversation with Dr. Wallace but are not a verbatim transcript. In today’s episode you will hear about: clinical meaningfulness and research wastage: defining and addressing, minimal important change: defining and measuring, four “Monday Morning Practices” to create clinically meaningful outcomes. Dr. Janet Patterson: Welcome to our listeners. Today I am delighted to be speaking with Dr. Sarah J. Wallace from the University of Queensland. In this episode we will be discussing the topic of operationalizing treatment success: what it means, the research efforts supporting this idea, why it is important to think about as we plan and deliver aphasia treatment, and suggestions for implementation in daily clinical practice. Dr. Wallace is an NHMRC Emerging Leadership Fellow, NHMRC Senior Research Fellow in the School of Health and Rehabilitation Sciences at the University of Queensland in Australia. She is also a Certified and practicing Speech Pathologist. Her research interests include communication disability in ageing and enabling and measuring meaningful change in language and communication impairment in individuals with post-stroke aphasia. She uses qualitative and mixed methods to explore the lived experience of communication disability and works in partnership with consumers and clinicians to co-produce clinical interventions and methodological approaches that support the production of meaningful outcomes. Among her interests in aphasia assessment and rehabilitation is a focus on measurement of aphasia and rehabilitation outcomes, in particular, outcomes that are real and are meaningful to persons with aphasia. Sarah led the ROMA group, Research Outcome Measurement in Aphasia, a group that has published three papers reporting efforts to identify standard outcome measures used in aphasia research. In addition, with colleagues across the world, she published a paper examining methods of operationalizing success in aphasia treatment in research and daily clinical practice. Foremost in this body of work is what I perceive to be Sarah’s desire to bring together ideas from persons with aphasia and their family members, assist clinicians and researchers to identify effective and efficient rehabilitation techniques, and to measure treatment outcome in a relevant and scholarly rigorous manner. Welcome to Aphasia Access Conversations, Sarah, and thank you for joining me today. Dr. Sarah Wallace: Thanks, Janet, for this invitation. I would like to start today by acknowledging the traditional owners of the lands from which I'm joining today, the Turrbal and Yuggera people, and pay my respects to their ancestors and their descendants who continue cultural and spiritual connections to country. Janet: Thank you very much. I appreciate that acknowledgement. Sarah, throughout your career, you have published papers focusing on aspects of aphasia rehabilitation, many of which explore the topic of measuring and standardizing outcomes in aphasia rehabilitation. How did you become interested in exploring this aspect of aphasia? Sarah: Before I completed my PhD, I worked first clinically, as a speech pathologist, and later in a government policy role in the area of aged care quality and safety. I really loved both of these roles for different reasons. As a clinician, I could make a difference at an individual level. But with the government role, I realized the huge impact you can have when you're influencing practice from a systems level. So, when I went on to complete my Ph.D., I really knew that I wanted to do something big picture. At the time, there had been a few big studies coming out with no results. There was a lot of talk about how important it is to get research design right. Then as part of my work at the time, I was reading the World Health Organization, World Report on Disability, and that's where I really started learning about this concept of research wastage and the importance of having a really considered approach to the way we measure outcomes when you want to use data efficiently beyond an individual study. That really appealed to me, particularly given that, within aphasia, we tend to have small sample sizes and really need to make the most of the data that we collect. Janet: Sarah, we often hear the term clinically meaningful in relation to aphasia outcomes. How would you define that term from the perspective of a person with aphasia? And also, from the perspective of aphasia clinicians and researchers? Sarah: This is an excellent question. This is something that I was really interested in during my Ph.D. It's this idea of what is a meaningful outcome. And who actually gets to decide that? And are we measuring what matters to the people who live with aphasia, and the clinicians who work with them? I remember reading at the time, and one of my favorite quotes is from a paper by a researcher called Andrew Long. He says, in practice what actually gets measured depends on who wants the data, and for what purpose. I really think that the idea of clinically meaningful depends on who you're asking, and why you're asking. As an example, in the studies that we conducted with people with aphasia and their family members, they thought improved communication was really important. But they also identified a range of outcomes that related to participation, to attitudes, to psychosocial well-being. But then things change when you look at a different stakeholder group. We also spoke to clinicians and managers around the world, and they identified a range of outcomes. But the really interesting part was that improved language itself wasn't actually considered essential. The top outcome that they came up with actually related to family members, that they understand how to communicate with the person with aphasia. I think what it comes down to is the message that I've really tried to share from my research is that different outcomes matter to different people. And we can measure them in so many different ways. And that this is something that we really have to think carefully about. Janet: Listening to your responses to these first two questions, I can feel the energy! I can feel this passion looking at aphasia rehabilitation from a larger perspective, outside the actual treatment that gets delivered, and thinking about how we make sure that our treatment is the right thing, and is measuring the right thing, whatever, as you say, the right thing is. It depends on who's looking for the data. You've maintained that focus of how can we become a better entity, better clinicians, if you will, at the broader scope? Does that make sense to you? Sarah: Yeah, it does, and that idea really resonates with me. I think that's definitely been a feature of the work I've done and the work that I continue to do. It's very focused on collaborative efforts and how we can make the most of what we have, so that we can ultimately improve outcomes for people with aphasia. Janet: I do think we need to pay attention to this. We cannot just assume that if we give a test pre and post treatment, it is a meaningful outcome to a person with aphasia or to their care partners or to a third-party payer. Sarah, you have led the ROMA group, that is Research Outcome Measurement in Aphasia. As I mentioned earlier that group published three papers describing standardized assessment measures suggested for use in aphasia rehabilitation outcome studies. Would you briefly describe the genesis of the idea for this work and the studies the group has published? Sarah: Following on from what I mentioned earlier, this was during my Ph.D. Once I had this idea that I wanted to do something to help reduce research wastage in aphasia, I started reading more about approaches to standardizing outcome measurement and came across the work of the Comet Initiative, which is a group that brings together people who are interested in the development of standardized sets of outcomes, which they refer to as Core Outcome Sets. There's this idea that a Core Outcome Set is essentially the minimum outcomes that should be measured in treatment studies of a particular condition. And that really appealed to me. So, we went from there, we conducted a series of studies looking at different stakeholders, gathering thoughts and perspectives about what an important outcome actually is. We conducted a scoping review of outcome measurement instruments so that we could try and match those outcomes to available tools. And then we've had a number of consensus meetings, where we've tried to pair those two things together. Janet: I think the work of the ROMA group is important, and being part of that group, it's exciting to watch the minds of people all over the world, contribute their various perspectives, and have discussions about the different measures and the value of the measures. While I think it's wonderful to work at this level, this broad level of perspective, at some point, it has to inform our daily clinical practice. How do you see that happening? Sarah: Yeah, that's a really good question. Essentially, we conduct treatment research so that we can help clinicians and people with aphasia and their families to make informed decisions about treatments. What's going to help? What's the best treatment for a particular issue and for a particular person? To answer these questions, researchers need to measure the effects that a treatment has on a person, what we refer to as outcomes. When we're measuring different outcomes in different ways it makes it harder to compare data, to combine it across studies, and to draw strong conclusions about which treatments work best. Core outcomes also need to be relevant, and this is the other part that has been really exciting to me. They should capture results that are important to people who live with that condition. Ultimately, I think that the clinical relevance of the ROMA Core Outcome Set lies in what it is hopefully doing - helping to produce the best evidence that we can get for aphasia treatments, so that those treatments can then be implemented into practice in order to improve the lives of people with aphasia and their families. Janet: I think that those papers should be required reading for every speech-language pathologist dealing with people with aphasia, and also other rehabilitation professionals, because it helps if we can all be thinking in the same way, as you said, to think about treatment candidacy and does one treatment work better, or for a specific person. or someone with a particular aphasia profile, than another kind of treatment? How do we make good clinical decisions for our patients? That's exactly, I think, what you're saying. I mentioned also earlier that with several colleagues, you recently published a paper titled Operationalizing Treatment Success in Aphasia Rehabilitation. That paper was published in the journal, Aphasiology. I am a great fan of that paper and would like to begin by asking you why it would be important, in your mind, to operationalize treatment outcomes, given the variability that we see among aphasia patients. Sarah: Thanks, Janet. And yeah, and this is a great paper. It was led by Caterina Breitenstein and other researchers from the Collaboration of Aphasia Trialists. This paper is really trying to answer the question, “What is a successful outcome from treatment?” What are the ways in which we can actually measure that treatment success? This is such an important question because research will end in clinical practice and so much hinges on this decision? Whether a treatment is successful is going to depend on how we define success and whether we can measure that success in a way that can actually be captured. Janet: Sarah, in light of your thinking about the different stakeholders, how might operationalizing treatment success differ for the various stakeholder groups that you've identified? That is, people with aphasia, family members, clinical and other medical professionals, medical administrators, and aphasia researchers? Sarah: This is really that idea that different outcomes are important to different people. If we think about this from a societal perspective, or from a healthcare funders perspective, any treatment that's provided as part of clinical care needs to be cost effective. So that might be something that from a funders point of view is a really important outcome. For clinicians, the ability for someone to take part in conversations and to communicate in different settings and roles is something that, through my research, was identified as an important treatment outcome. Then from the perspective of people with aphasia, not surprisingly, it's improved communication. But it's all these other things as well. It's being able to participate in a conversation. It's having a sense of recovered normality and a feeling of autonomy and independence. So again, I really think it's the idea that it really depends on who you're asking, and the perspective that they're coming from. Janet: Your comments make me think about work done by Jackie Hinckley and others about stakeholders being part of deciding research questions or research directions. It also makes me think about work done by Michael Biel and others about motivation and engagement. All of these, I think, have a bearing on the research or the clinical enterprise. Are people engaged? Are they willing to commit time and resources to a rehabilitation enterprise because they see value in it, and because they see that there's a likelihood of a good outcome. I believe that what you're doing in terms of thinking about operationalizing helps move us along in that direction. Sarah: Absolutely. I think that's a really important point, that if someone can't see the relevance of what they're working on in therapy, for example, then they're not going to engage in that process. It really starts with goal setting, and really identifying, working with a person to identify, goals which are really going to be functionally relevant to them and to their day-to-day life. I think if you can get that part right, then everything else follows on from that. Janet: In your paper, you and your colleagues describe the concept of minimal important change, as a way of determining clinically relevant improvement on an outcome measure, considering the average statistically significant change across groups, as well as statistical significance at the individual level. Can you unpack that concept for us and describe how it relates to daily clinical practice? Sarah: Yeah, absolutely. This is a really exciting idea, I think. Basically, minimal important change, and it is called different things, but this is the term that we've chosen to use, is the smallest change score above which an outcome is experienced by someone as being relevant or meaningful. I really love this idea, because what we're essentially doing is applying qualitative meaning to quantitative change on an outcome measure. To put this in an example, what this might actually look like, what we're asking is, for example, if I do a Western Aphasia Battery, and then do it again, how many points would actually tell me that that person had experienced a level of meaningful change. So that's what we're trying to work out to determine these benchmarks for meaningful change. We've actually recently received funding for this work, which is really, really exciting. We're going to be undertaking a project, where we use an anchor-based method to establish minimal important change scores for the measures that are in the ROMA Core Outcome Set. Janet: That makes a lot of sense, because I know in the paper, there are some formulas and statistical representations and discussions that might not be easily familiar to some of our listeners. It was a tough read in some parts of your paper, for sure. Sarah: Yeah, it is. It's probably not the sort of paper that you sit down and read from start to finish, I think. Some of these concepts are complicated, and they are a bit dense, but I sort of see that paper almost as a reference guide. I think it's the sort of thing that you can come back to, and it does, you know, tend to make more sense over time. Janet: You did give us one example about operationalizing outcomes with the Western Aphasia Battery and minimal important change. Are there a couple of other examples drawn from this paper that you might share, bringing it to the level of our daily clinical practice? Janet: Sure. Well, I think, overall, one of the really nice things this paper does, is it actually explains that you can determine treatment success in a number of different ways. We go through concepts around, what approach would we take if we're trying to work out does this treatment work for this particular population, and how well does it work? Then we have different approaches where we’re looking at who does it work for, looking at individual change on outcome measures. It really walks you through approaches for group level analysis, looking at mean differences between groups in research trials, versus approaches for determining individual therapy response and outcomes, like minimal important change, and like smallest detectable change. Janet: Is there an idea or a thought, from this paper and from your work in thinking about operationalizing outcomes that you might give to our listeners that they can put into practice on Monday morning in their clinical practice? Sarah: Absolutely. This is something I've given a lot of thought about recently, because I think it's one thing to have a very theoretical sort of paper, and to think about the minutiae of all of these issues, but I think for clinical practice it comes down to probably about four different things. (One) I mentioned earlier, I really believe that meaningful outcome measurement starts with shared goal setting. You need to work with your clients to really set meaningful goals that are relevant to them, that they are invested in, and that are going to help them to achieve the outcomes that are important to them. (Two) The next thing I think, is thinking about, “I have these goals.” We have Clinical Practice Guidelines, we have research evidence, and I would encourage clinicians to use those resources to then really think, “Well, which treatments do we know are effective? Which treatment is most likely to work for the person that I have sitting in my clinic?” (Three) The next part is when we really get to the measurement part of it, which is really thinking about what you want to measure. Thinking about those goals, thinking about your treatment, where would you expect change to happen following that treatment? Are you looking for a change in function? Or in a behavior? Or is it a feeling, is it confidence that you're trying to change or, someone's emotional wellbeing or an attitude? What is it that you're actually looking to change? (Four) Once you've determined what you want to measure, it's then thinking about what's the most appropriate way of measuring that? For something like... /episode/index/show/aphasiaaccess/id/24953109

Episode #93: Raising Voices, Spirits, and Data through the SingWell Project: In conversation with Dr. Arla Good and Dr. Jessica Richardson 10/27/2022

Episode #93: Raising Voices, Spirits, and Data through the SingWell Project: In conversation with Dr. Arla Good and Dr. Jessica Richardson Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein-Ellis, Program Specialist at 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. I'm today's hosts for an episode featuring Dr. Arla Good and Dr. Jessica Richardson. We will discuss the SingWell Project and the role of aphasia choirs from a bio-psychosocial model. Today's shows features the following gap areas from the Aphasia Access State of Aphasia Report authored by Nina Simmons-Mackie: Gap area #3: insufficient availability of communication intervention for people with aphasia, or the need for services. Gap area #8: insufficient attention to depression and low mood across the continuum of care. Gap area #5: insufficient attention to life participation across the continuum of care. Guest Bios: Dr. Arla Good is the Co-director and Chief Researcher of the SingWell Project, an initiative uniting over 20 choirs for communication challenges around the world. Dr. Good is a member of the Science of Music, Auditory Research and Technology or SMART lab at Toronto Metropolitan University, formerly Ryerson University. Much of her work over the last decade has sought to identify and optimize music based interventions that can contribute to psychological and social well-being in a variety of different populations. Dr. Jessica Richardson is an associate professor and speech-language pathologist at the University of New Mexico in the Department of Speech and Hearing Sciences, and the Center for Brain Recovery and Repair. She is director of the UN M brain scouts lab and the stable and progressive aphasia center or space. Her research interest is recovering from acquired brain injury with a specific focus on aphasia, recovery, and management of primary progressive aphasia. She focuses on innovations in assessment and treatment with a focus on outcome measures that predict real world communication abilities, and life participation. Listener Take-aways In today’s episode you will: Learn about the SingWell Project model of supporting choirs and research around the world Learn which five clinical populations are the initial targets of the SingWell Project Discover how the SingWell Project is challenging the stigma about disability and singing Learn about some of the biopsychosocial measures being used to capture choir outcomes Transcript edited for conciseness Show notes Ellen Bernstein-Ellis 02:58 I'm going to admit that aphasia choirs have long been one of my clinical passions. I'm really excited and honored to host this episode today. I'd like to just start with a question or two that will help our listeners get to know you both a little better. So Arla, is it okay, if I start with you? Would you share what motivated you to focus your research on music-based interventions? Do you have a personal connection to music? Arla Good 03:29 I feel like I could do a whole podcast on how I ended up in this field. Ellen Bernstein-Ellis 03:33 That'd be fun. Arla Good 03:34 There's just so many anecdotes on how music can be a powerful tool. I've experienced it in my own life, and I've witnessed it in other lives. I'll share one example. My grandfather had aphasia and at my convocation when I was graduating in the Department of Psychology with a BA, despite not being able to communicate and express himself, he sang the Canadian National Anthem, perfect pitch-- all of the words. It's just an accumulation of anecdotes like that, that brought me to study music psychology. And over the course of my graduate studies, I came to see how it can be super beneficial for specific populations like aphasia. So, I do have a quote from one of our choir participants that really sparked the whole idea of SingWell. It was a Parkinson's choir that we were working with. And she says, “At this point, I don't feel like my Parkinson's defines me as much as it used to. Now that I've been singing with the group for a while, I feel that I'm also a singer who is part of a vibrant community.” And that really just encapsulates what it is and why I'm excited to be doing what I'm doing-- to be bringing more positivity and the identity and strength into these different communities. Ellen Bernstein-Ellis 04:49 Yes, the development of positive self-identity in the face of facing adversity is such an important contribution to what we do and thank you for sharing that personal journey. That was really beautiful. Jessica, I'm hoping to get to hear a little bit about why what your personal connection is to aphasia choirs and music. Jessica Richardson 05:12 Again, so many things. I grew up in a musical household. Everyone in my family sings and harmonizes and it's just beautiful. But a lot of my motivation for music and groups came from first just seeing groups. So some early experience with groups at the VA. Seeing Dr. Audrey Holland in action, of course, at the University of Arizona-that's where I did my training. Dr. Elman, you, of course, so many great examples that led to the development of lots of groups. We do virtual online groups for different treatments, different therapies. We have space exploration. We have space teams, which is communication partner instruction that's virtual. So we do lots of groups. And of course, we have a neuro choir here in New Mexico. Now, I'm just so excited that there's so much research that's coming out to support it. Ellen Bernstein-Ellis 06:03 Jessica, can I just give you a little shout out? Because you were visionary. You actually created these amazing YouTube videos of your choir singing virtually, even before COVID. And you came out with the first virtual aphasia choir. I remember just sitting there and just watching it and being amazed. And little did we know. I guess you knew! Do you want to just take a moment because I want to put those links in our show notes and encourage every listener to watch these beautiful virtual choir songs that you've done. You’ve done two right? Jessica Richardson 06:44 Yes. And I could not have done it, I need to make sure I give a shout out to my choir director, Nicole Larson, who's now Nicole Larson Vegas. She was an amazing person to work with on those things. She also now has opened a branch neuro choir, just one town over. We're in Albuquerque and she's in Corrales and our members can go to either one. We coordinate our songs. I'd really like to start coordinating worldwide, Ellen. We can share resources and do virtual choirs worldwide and with Aphasia Choirs Go Global. But I definitely want to give her a shout out. And then of course our members. I mean, they were really brave to do that. Because there was nothing I could point them to online already to say, “Hey, people are doing this. You do it.” So they were really courageous to be some of the first. Ellen Bernstein-Ellis 07:36 Do you want to mention the two songs so people know what to look for? And just throw in the name of your choir. Jessica Richardson 07:42 We're just the UNM neuro choir as part of the UNM Brain Scouts. The first song was The Rose. The second song was This is Me from the Greatest Showman. And the song journal that you could wait for in the future is going to be Don't Give Up On Me by Andy Grammer. Ellen Bernstein-Ellis 08:01 Beautiful! I can hardly wait. And there are some endeavors and efforts being made to create these international groups. Thank you for doing a shout out to Aphasia Choirs Go Global, which is a Facebook group to support people who are involved in neuro and aphasia choirs. I'll give a shout out to Bron Jones who helped start it and Alli Talmage from New Zealand who has worked really hard to build a community there. It's been really wonderful to have a place where we can throw out questions to each other and ask for opinions and actually dig into some interesting questions like, “What measures are you using to capture X, Y, or Z?” I think we’ll get to talk about some of that today, actually. So thank you. I encourage our listeners to listen to those two YouTube videos we'll put in the show notes. But Jessica, I’m going to give you a twofer here. I've been following your amazing work for many years, but the first time I got to meet you in person was at an Aphasia Access Leadership Summit. I wanted to ask you as an Aphasia Access member, if you have any particular Aphasia Access memories that you could share with our listeners? Jessica Richardson 09:09 Well, it was actually that memory. So, I would say my all-time favorite collection of Aphasia Access moments, really was working with my amazing colleague, Dr. Katerina Haley. She's at UNC Chapel Hil. We were co-program chairs for the Aphasia Access 2017 summit in Florida. The whole summit, I still think back on it and just smile so wide. And you know, we went to the museum, we were at the Aphasia House, just so many wonderful things. All of the round tables and the presentations, they just rocked my world. And it's just something I'm super proud to have been a part of behind the scenes making it happen. And I also remember that you wrote me the nicest note afterwards. Ellen Bernstein-Ellis 09:54 It was just because it impacted me, too. Personally, I felt like it just cracked open such a world of being able to have engaging discussions with colleagues. Tom Sather, really named it the other day (at IARC) when he quoted Emile Durkheim’s work on collective effervescence, the sense of being together with a community. I'm seeing Arla, nodding her head too. Arla Good Yeah, I like that. Ellen Bernstein-Ellis Yeah, there was a lot of effervescing at these Leadership Summits, and we have one coming up in 2023. I'm really excited about it and hope to get more information out to our listeners about that. So I'll just say stay tuned. And you'll be hearing more, definitely. I just want to do one more shout out. And that is, you mentioned international collaboration. I'd like to do a quick shout out to Dr. Gillian Velmer who has been doing the International Aphasia Choirs. I’ll gather a couple of links to a couple of songs that she's helped produce with people around the world with aphasia singing together. So there's just some great efforts being done. That’s why I'm excited about launching into these questions. I want to start with an introduction of SingWell. Arla, would you like to get the ball rolling on that one? Arla Good 11:09 For sure. SingWell began with my co-director, Frank Russo, and myself being inspired by that quote I shared at the beginning about singing doing something really special for these communities. We applied for a Government of Canada grant and we received what's called a Partnership grant. It really expanded well beyond just me and Frank, and it became a network of over 50 researchers, practitioners, national provincial support organizations, and it continues growing. It's really about creating a flow of information from academia to the community, and then back to academia. So understanding what research questions are coming up in these communities of interests. And what information can we, as researchers, share with these communities? That’s SingWell, I'll get into the research questions. Ellen Bernstein-Ellis 12:03 Let's dive in a little bit deeper. What is SingWell’s primary aim? That's something you describe really well in an article we'll talk about a little later. Arla Good 12:15 So our aim is to document, to understand, group singing as a strategy, as a way to address the psychosocial well-being and communication for people who are living with communication challenges. SingWell, we're defining a communication challenge as a condition that affects an individual's ability to produce, perceive or understand speech. We're working with populations like aphasia, but also people living with hearing loss, lung disease, stuttering. I hope, I don't forget anybody. There are five populations. Parkinson's, of course. Ellen Bernstein-Ellis 12:53 Perfect. So that's your primary aim. Do you want to speak to any secondary or additional goals for your project? Arla Good 13:03 The second major pillar of this grant is to advocate and share the information with these communities. So, how can we facilitate the transfer of this knowledge? We've started a TikTok channel, so you can watch videos. We have a newsletter and a website that's continuously being updated with all the new information. We want to develop best practice guides to share with these communities about what we've learned and how these types of choirs can be run. And really, just mobilize the network of partners so that we're ensuring the information is getting to the right community. Ellen Bernstein-Ellis 13:35 Wow. Well, I mentioned a moment ago that there's a 2020 article that you wrote with your colleagues, Kreutz, Choma, Fiocco, and Russo that describes the SingWell project protocol. It lays out your long term goals. Do you want to add anything else to what you've said about where this project is headed? Arla Good 13:54 Sure, the big picture of this project is that we have a network of choirs that are able to address the needs of these different populations. I want the network to be dense and thriving. The home of the grant is Canada. But of course, we have partners in the states, like Jessica, and in Europe and in New Zealand. So to have this global network of choirs that people can have access to, and to advocate for a social prescription model in healthcare. Have doctors prescribing these choirs, and this network is available for doctors to see, okay, here's the closest choir to you. So, in some ways, this is a third goal of the project is to be building this case for the social prescription of singing. Ellen Bernstein-Ellis 14:41 Before we go too much further, I want to acknowledge that you picked a wonderful aphasia lead, Dr. Jessica Richardson. That's your role, right? We haven't given you a chance to explain your role with SingWell. Do you want to say anything about that Jessica? Jessica Richardson 14:58 Yeah, sure. I'm still learning about my role. Overall, I know theme leaders, in general, were charged with overseeing research directions for their theme. Aphasias, the theme that I'm leader of, and then monitoring progress of research projects and the direction of that. So far, it's mostly involved some advising of team members and reviewing and giving feedback of grant applications. I'm supposed to be doing more on the social and networking end and I hope to be able to make more that more of a priority next year, but I do think this podcast counts. So thank you for that. Ellen Bernstein-Ellis 15:33 Well, you did a wonderful presentation. I should be transparent, I was invited to be on the Advisory Committee of SingWell, and I got to hear your first presentation at the first project meeting where each team leader explained their focus and endeavor. I was so excited to hear the way you presented the information on aphasia, because again, we know that for some people, aphasia is not a well-known name or word. And even though this is a very educated group, and I think everybody, all the leaders know about aphasia, but it was nice to see you present and put on the table some of the challenges and importance of doing this research. One of the things that really attracted me when reading about that 2020 article is that you talk about SingWell having an ability versus disability focus early, Arla, could you elaborate on that? Arla Good 16:22 Our groups are open to anybody, regardless of their musical, vocal or hearing abilities. And we compare it often to the typical talk-based support groups that focuses on challenges and deficits. Of course, there's a time and place, these can provide a lot of benefit for people living in these communities. So, this isn't a replacement for these types of support groups, But, singing is a strength-based activity. They're working together to create a beautiful sound and there's often a performance at the end that they're very proud of. We're challenging stigma, especially in a population like aphasia, where it would seem like, oh, you have aphasia, you can't sing? But, of course they can. We’re challenging that stigma of who can sing and who can't sing. We find that it's just so enjoyable for these people to be coming and doing something strength- based and feeling good. Going back to that, quote I said at the beginning, right? To feel like there's more to their identity than a diagnosis. This is what keeps them coming back. Ellen Bernstein-Ellis 17:22 Beautifully said, and I can't help but think how that really connects with the life participation approach. There's no one better than Jessica, for me to throw that back out to her, and ask how she sees the connection between that. Jessica Richardson 17:37 Yes, absolutely. Their focus on ability and fighting loneliness and isolation and on social well-being is right in line with it. Because LPAA is really focusing on reengagement in life, on competence, rather than deficits, on inclusion, and also on raising the status of well-being measures to be just as important as other communication outcomes. I want to make sure we also bring up something from our Australian and New Zealand colleagues, the living successfully with aphasia framework, because it is also in line with LPAA and SingWell. I can say they have this alternative framework. They also don't want to talk about the deficit or disability. It doesn't try to ignore or even minimize the aphasia, but it emphasizes positive factors, like independence, meaningful relationships, meaningful contributions, like you know that performance. So there's just so much value and so much alignment with what Aphasia Access listeners and members really care about. Ellen Bernstein-Ellis 18:44 That's a great transition for what I was thinking about next. I was very excited to see people talking about the 2018 review by Baker, Worrall, Rose and colleagues that identifies aphasia choirs as a level one treatment in the step psychological care model for managing depression in aphasia. So that's really powerful to me, and we're starting to see more research come out looking at the impact of participating in aphasia choirs. I'm really excited to see some of this initial research coming out. Maybe you can address what some of the gaps in the literature might be when it comes to group singing? And its impact on well-being. Maybe Arla, we can start with that and then Jessica, you can jump in and address specifically communication and aphasia choirs. Arla, do you want to start out? Arla Good 19:35 This is a very exciting time, like you said, there is research that is starting to come out. People are starting to study choirs as a way of achieving social well-being, psychological well-being and so the field is ripe and ready for some good robust scientific research. Most of the studies that are coming out have really small sample sizes. It's hard to get groups together, and they often lack comparison groups. So what I think SingWell is going to do is help understand the... /episode/index/show/aphasiaaccess/id/24793710

Episode #92: Transforming Person-Centered Care Through LPAA Knowledge: A Conversation with Melinda Corwin and Brooke Hallowell 10/18/2022

Episode #92: Transforming Person-Centered Care Through LPAA Knowledge: A Conversation with Melinda Corwin and Brooke Hallowell 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. 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. Guest bios Melinda Corwin is a university distinguished professor and clinical supervisor at the Texas Tech University Health Sciences Center (TTUHSC) Department of Speech, Language, and Hearing Sciences, where she has worked since 1994. Prior to her university position, she worked as a hospital speech-language pathologist. She directs the Stroke & Aphasia Recovery (STAR) Program, a community outreach program in Lubbock, Texas, for persons with aphasia and their families. Brooke Hallowell is professor and dean of health sciences at Springfield College. Brooke is a specialist in neurogenic communication disorders, and has been working clinically, teaching future clinicians, and engaging in research on aphasia for 25 years. She is known for transnational research collaboration, academic and clinical program development, and global health programming in underserved regions of the world. A pioneer in using eyetracking and pupillometry to study cognition and language in adults, she holds patents on associated technology. Professor Hallowell is the author of Aphasia and Other Acquired Neurogenic Language Disorders: A Guide for Clinical Excellence. Listener Take-aways In today’s episode you will: Identify key differences between clinician-centered care and person-centered care. Understand gaps in current training regarding the Life Participation Approach. Learn about the Aphasia Access knowledge course. 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. 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 pleased to be joining the podcast as today's host for an episode that will feature Melinda Corwin and Brooke Halliwell. We’ll be discussing Aphasia Access’s new online project, Person-Centered Care: The Life Participation Approach to Aphasia Knowledge Course, which debuts this month, I had the pleasure of playing a small role in this project as the narrator for the course. Melinda Corwin is a University Distinguished Professor and clinical supervisor at the Texas Tech University Health Sciences Center Department of Speech, Language and Hearing Sciences, where she has worked since 1994. Prior to her university position, she worked as a hospital speech language pathologist. She directs the Stroke and Aphasia Recovery, or STAR, program, a community outreach program in Lubbock, Texas, for persons with aphasia and their families. Brooke Hallowell is a professor and dean of health sciences at Springfield College. Brooke is a specialist in neurogenic communication disorders and has been working clinically, teaching future clinicians, and engaging in research on aphasia for 25 years. She is known for transnational research collaboration, academic and clinical program development, and global health programming in underserved regions of the world. A pioneer in using eye tracking and pupillometry to study cognition and language and adults, she holds patents on associated Technology. Professor Halliwell is the author of Aphasia and Other Acquired Neurogenic Language Disorders: A Guide for Clinical Excellence, Second Edition. Thank you for joining me. I wanted to start with an “aha moment,” anything that stands out for you in terms of the Life Participation Approach. Who would like to start? Melinda Corwin So, at our university, I got to meet a man who was in his 60s, he had survived a stroke two years prior, he was single and living in a long term care facility. He didn't have any family locally. He came to our university community outreach program for people with aphasia. And after about six months of being with us, he confided to his student clinician one day that he wondered if he could work out a payment plan to pay for throat surgery to fix his problems with speech and communication. And we realized that he did not understand the nature of aphasia. He actually thought there was a surgery available to fix or cure it, and that because he was low income, he didn't have the money to afford it. That was my aha moment, where I realized that we had failed him, our system had failed him. This man deserved to have access to his health information regarding his diagnosis, his condition, his prognosis, and he didn't get that as part of his ability to participate in his life and in his health care plan. And I knew we could do better. And so I found colleagues and friends through Aphasia Access, and I'm really hoping and working towards a systemic change for that reason. Lyssa Rome Thank you. Brooke, what about you? Brooke Hallowell Well, I continue to have aha moments. For for me, one that stands out relates to my role as an educator and a person who teaches courses in aphasia and author to support learning and future clinicians who will be working with people who have aphasia. It was hard for many of us who were raised with a focus on medical and impairment-based, deficit-focused models of aphasia, to integrate our appreciation for foci on life participation with how we were taught, and may have previously taught and mentored our students. It's as if, for many of us, the recognition of how essential it is for us to embrace life participation was there long before we had a good grasp on how to integrate life participation holistically into our educational content. We wanted to make sure our students knew about medical, neuroscientific, neuropsychological, psycholinguistic, etc., aspects of aphasia, and we wanted to make sure they knew about the theoretical underpinnings of aphasia-related content. So if you think about what we can cover in a course, in our limited time with future clinicians, we felt and still do just never have sufficient time to delve into some of the really critical life participation content. So for me it kind of aha moment. Although I gotta say it wasn't. So sudden as a flash at a single moment in time, maybe an aha phase. It relates to the importance of helping current and future clinicians embrace that we all need to be able to hold several conceptual frameworks about aphasia in our minds at the same time, and that by understanding and appreciating multiple perspectives, we didn't have to necessarily choose one over the other. We didn't have to argue about which models were better than others, or whether working on impairment level deficits was somehow not essential to life participation. Once that realization was clear within me, I found that it was easier to integrate life participation and the ICF framework through our all of our discussions and teaching about aphasia and other disorders as well. Many of us invested in life participation approaches have supported one another in that sort of integration of multiple frameworks in our thinking, and in our work. Aphasia Access has been a powerful force in that regard. The mutual support to hold life participation paramount, no matter what are other theoretical perspectives, and medical or non-medical orientations. Lyssa Rome Thank you. I think that leads really nicely, actually, into this topic of the knowledge course that that Aphasia Access has developed and that's debuting this month. So can you tell us a little bit more about the project and how it began? Melinda Corwin The project began with the plight of both people with aphasia and speech language pathologist. Of course, SLPs know that people with aphasia want to participate in life, which means their current life as a patient, or in their life when they go back home and their life years into the future. The plight for speech language pathologists is that they face enormous time limitations, insurance reimbursement constraints, they have increased workload across all the different healthcare systems and settings. And so providing true person-centered care, health equity, and personalized goals for each person that we serve can feel almost impossible. This challenge was so pervasive that it appeared in a comprehensive report written by Nina Simmons-Mackie in 2018, called Aphasia in North America, and it's available from Aphasia Access. In her report, she listed the gap areas and so we really wanted to focus on gap area number five, which is related to insufficient attention to life participation across the continuum of care. And also gap area number six, which is related to insufficient training and protocols or guidelines to aid speech language pathologists and other health care professionals in the implementation of this participation-oriented intervention across the continuum of care. So the year that her report came out a team of aphasia clinicians, researchers, and program providers mobilized to invent a product to concretely try to address these gap areas. We wanted to offer busy clinicians and healthcare professionals training that they wouldn't have to travel to, and something that was more than a webinar. We did a lot of research to produce the learning experience, and we tried to provide the most contemporary, interactive learning methods for adults. Our beta testers have said that they have found the course to be different and highly valuable. Lyssa Rome So I think obviously, there's this big need. And I'm wondering, Brooke, maybe if you could speak a little bit more to how this person-centered care approach can support the goals of increasing life participation, and maybe differentiate a little bit between clinician-centered care and person-centered care for people with aphasia? Brooke Hallowell Sure. In clinician-centered care, the clinician is really in charge of all aspects of intervention. The clinician is the boss. The clinician decides what will be assessed and how it will be assessed. The clinician interprets the assessment results. And from that, sets goals for the person with aphasia. And the clinician decides on the treatment methods that will be used to reach those goals. And that's very different from person-centered care, where the person and the clinician are collaborators from the start, they work together to determine priorities for what that person really wants to be able to do in life and how communication affects what a person wants to do. In person-centered care, the person's priorities are really the primary focus of assessment and goal setting and every aspect of intervention. And the person and the clinician set goals collaboratively, often including other people that are important in that person's life. And together, they collaborate in selecting what goals will get prioritized, and what the context is for working on those goals that's most relevant to the person. So the person's priorities are at the heart of our work in person-centered care. We clinicians collaborate with the person, and those people who are important to the person, at every stage of goal setting, assessment, treatment planning, etc. Lyssa Rome So thinking about person-centered care, I'm wondering if you can describe a little bit more about the goals of this knowledge course and how they relate to person-centered care. Brooke Hallowell Sure, the overarching goal is to provide learners with foundational, verifiable knowledge that's critical for providing person-centered care. Person-centered care is a universal and global need for people who have aphasia, and those who are important in their lives. The Life Participation Approach is fundamental to this wish that clinicians worldwide have for people with aphasia. That's increased participation in life regardless of race, ethnicity, gender, gender expression, national origin, geographic location, religious or other beliefs—regardless of any individual differences. This course is the first in a series. The knowledge course consists of eight online, self-paced interactive modules, each of which contains three specific learning objectives. The knowledge course is a standardized way that clinicians—from novices to experienced clinicians—can be formally recognized as a Life Participation Approach professional. When a person successfully completes the course, they earn an eBadge, a certificate, and an optional 2.5 continuing education credits for those who are members of the American Speech Language Hearing Association. Next year, Aphasia Access will release the second in the series: the practice course. That course will build on the fundamentals of the knowledge course, passing that course will lead to the award of a second badge focused on implementation strategies across care settings. Every course module is designed to provide practical suggestions, graphics, dynamic video clips, and interactive and reflective activities to help key concepts come alive. Lyssa Rome Tell us a little bit more about the content team. Who worked on this badge project? Melinda Corwin This is Melinda and it's been an honor to serve as the content team manager for the project. For the knowledge course we had eight members on our team. Our lead author is Nina Simmons-Mackie, who's a professor emeritus at Southeastern Louisiana University. Of course, Brooke Hallowell, who as you said, is professor and dean of health sciences at Springfield College. Brooke also secured a grant to help with funding portions of this project and we could not have done it without her. And our other team members include Katarina Haley, who is a professor at the University of North Carolina at Chapel Hill, and she directs the UNC Center for Aphasia and Related Disorders. Mary Hildebrand is a recently retired associate professor and program director of the occupational therapy department at Massachusetts General Hospital or MGH Institute of Health Professions. Jacqueline Laures-Gore is an associate professor of communication sciences and disorders at Georgia State University. We have Marjorie Nicholas, who's the chair of the communication sciences and disorders department at MGH Institute of Health Professions in Boston. And last but not least, our project manager Kathryn Shelley. She is co-founder and current grants director of the Aphasia Center of West Texas, and she's also a former president of Aphasia Access, and this course would not be possible without Kathryn’s guidance. Lyssa Rome Tell us a little bit more about what the benefits are of having this eBadge or taking this course. Brooke Hallowell Sure, this is Brooke. The badge is going to convey to others that the participant has a firm foundation of person-centered care, which is, as we know, at the heart of the life participation approach. So benefits include delivering equitable, person-centered care through collaborative goal setting and intervention, improving success for people with aphasia, and those who care about them and helping specific care settings meet communication access mandates. When an eBadge is displayed in an email signature, or on social media, there'll be a clickable link. And that will help employers, or colleagues, or the people that we serve, even friends and family, link to a full description of what it means to have earned that eBadge. Lyssa Rome Great. Many of the professionals who are involved in Aphasia Access are experts in the life participation approach. So why would they want to take this course to document their knowledge? Melinda Corwin This is Melinda. Well, by devoting personal time, energy, and resources to earn an eBadge, it’s an efficient way to let others know that we share a common goal to provide patient-centered care across the continuum of care. And regardless of what setting a particular professional is in, whether they're in an acute care hospital, inpatient rehabilitation, outpatient rehab, home health, or community-level aphasia program, or group, these eBadge holders will be able to identify each other. I'm a university professor and director of an aphasia community outreach program. I've been trying to teach and use the Life Participation Approach for several years, and I've wanted to spread the word with other speech language pathologists. So by adding this symbol to my email signature, I hope that colleagues will click on the eBadge and see what I've been up to. My decision to display the eBadge is my way to help make system change possible, I envision a day in which all healthcare providers will aspire to provide patient-centered care, essentially from the ambulance ride to the emergency center, all the way to the person's return to home and community. Lyssa Rome The benefits of this seem really clear. But will this eBadge or certificate be required for a clinician to to employ a person-centered or life participation approach to aphasia? Brooke? Brooke Hallowell Oh, no, definitely not. I have to chime in on that. We know that many clinicians are deeply engaged in this approach. And many have adhered to this approach for years and in ways that may not have been labeled expressly as life participation approach. Still, based on gaps that we know exists in our current healthcare and community settings, we hope that the eBadge will really help clinicians showcase their knowledge to employers and peers and the people they serve. Engaging in the course itself can provide support for students and clinicians who want to consider life participation constructs, perhaps more deeply or in new ways. And as Melinda was just intimating, it's also a means of confirming shared values about life participation amongst us. Lyssa Rome So when people have completed this course, how is that displayed as an eBadge? Melinda, maybe you can take that one? Melinda Corwin Yes. So it'll be in the person's email signature line, if they choose to place it there. And the eBadge is from a company called Credly, which enables anyone to click on the badge icon and be taken to a website that explains exactly what training the person completed to earn that eBadge. Brooke Hallowell Yeah, and it's so easy to register for the course, just go to the Aphasia Access website. That's www.aphasiaaccess.org. From there, you'll see the link to the knowledge course on the homepage. And that will take you to our new Aphasia Access Academy, which is the new home for all of our educational experiences. There is a cost. The cost for Aphasia Access members is $129. And for non-members, it's $179. And if you're not already an Aphasia Access member, your enrollment in the course includes a one year, first-time membership. So it's really a wonderful way to experience so many benefits of our Aphasia Access membership and network. We have our Brag and Steal events, the distinguished lecture series, shared free resources, there's a discount registration for the Leadership Summit, and there are also on-demand pre-recorded webinars. So all of that comes along with that membership. Lyssa Rome Well, I'm really excited about this course. And I appreciate your sharing more details about... /episode/index/show/aphasiaaccess/id/24723111

Episode #91: LPAA Internationally - A Conversation with Ilias Papathanasiou 09/29/2022

Episode #91: LPAA Internationally - A Conversation with Ilias Papathanasiou Welcome to this edition of Aphasia Access Conversations, a series of conversations about topics in aphasia that focus on the LPAA model. My name is Janet Patterson, and I am a Research Speech Language Pathologist at the VA Northern California Health Care System in Martinez, California. These Show Notes follow the conversation between Dr. Papathanasiou and myself, but are not an exact transcript. Dr. Ilias Papathanasiou is a Professor of Speech and Language Therapy at the Department of Speech and Language Therapy, University of Patras, and a Research Associate at the Voice and Swallowing Clinic, the First ENT Clinic of the Medical School of the National Kapodistrian University of Athens Greece. He is a Fellow of the American Speech-Language-Hearing Association and has received numerous awards and recognition for his tireless efforts on behalf of aphasia awareness and rehabilitation research in the international community. In today’s episode you will hear about: considering LPAA values across social, cultural and international norms, increasing aphasia awareness through actions in the local community, mentoring speech-language pathologists who are learning about aphasia and LPAA in countries initiating aphasia rehabilitation services. Dr. Janet Patterson: As Ilias and I start this podcast, I want to give you a quick reminder that this year we are sharing episodes that highlight at least one of the gap areas in aphasia care identified in the Aphasia Access, State of Aphasia report, authored by Dr. Nina Simmons-Mackie. For more information on this report, check out Podversations episode # 62 with Dr. Liz Hoover, as she describes these 10 gap areas or go to the Aphasia Access website. This episode with Dr. Papathanasiou focuses on gap area number seven, insufficient or absent communication access for people with aphasia or other communication disorders, and gap area 10, failure to address family and caregiver needs including information, support, counseling, and communication training. I hope our conversation today sheds additional light on these gap areas. With that introduction, I would like to extend a warm welcome to my friend and noted aphasiologist, Dr. Ilias Papathanasiou. Welcome Ilias and thank you for joining me today on Aphasia Access Podversations. Dr. Ilias Papathanasiou: Thank you very much for this kind invitation. I'm thrilled to be with you and speak about aphasia from a rather international perspective. As you know, I have been trained in UK, I work in Greece, and have been active in many places around the world and working with developing countries, for people with aphasia. Janet: Ilias, I'm just thrilled to have you here, and as a side note to our listeners, Ilias and I have already been talking for about an hour sharing wonderful stories about aphasia and international aphasia. Sadly, most of that won't be caught on this particular tape, but I hope a good bit of it will, because Ilias, you are a fount of information, not only about aphasia, but also about aphasia and the international community. Let me start by saying that our listeners, Ilias, are likely very familiar with the LPAA model, which as we all know, places the person with aphasia at the center of decision-making, to support them in achieving their real-life goals and reduce the adverse consequence of aphasia. How do you think social and cultural norms play a role in understanding the LPAA model? Ilias: This is a very interesting question, which we'll have to answer. But first of all, I think we have to start with what is aphasia and how the implications of aphasia start in the community. I will say, aphasia is a language impairment, first of all, which is related from the focal lesion, which has, of course, great effects on the person with aphasia, on the quality of life, on the social network and the person, on the making friendships, on how the person functions, and the everyday environment. Now, how the person functions in the everyday environment, is related to many, many social norms. I have been working for 15 years in UK and then back to Greece. And I think that's changed my perspective. What is the social role? What the social model can offer in aphasia, because we have two different societies so they believe there are too many different societies around the world which can see aphasia as a different perspective. Taking the example from Greece, I think Greece has got a much-closed family network and supportive network comparing with other developing countries. I mean, the traditional Greece accepted that people will live with or very near their children, will have family nearby, they have their friends nearby, and they will try to - the family - to take the leadership support of the person with aphasia. This is something which might be a bit different with the USA. So in this way, the decision relies on the person and their LPAA approach of getting together and having a chat, which is not what it is for me. It is totally different, it is different in that there you have to help the participation for these people. From this perspective, I will say that life participation approach, if you take a very more wide perspective, is how we take behavior. How we take behaviors doing therapy, not only to the linguistic background because we have to start from there, you know, it's a language impairment, but also to changing behaviors of the people surrounding, to the society, and even to the government policy some time. And there's not only you know, intervening to the benefit to the person and facilitated the person which of course is correct, it's not only that. I will bring the examples. How many hospitals around the world are aphasia friendly? How many documents used by the government are aphasia friendly? And they think this access to solve this information is restricted to the people with aphasia. That is not only in USA, but I think is around the world and even you know, in different parts of the world. Some other movements of people with special skills, for example, people with visual impairment, or hearing impairment, they have been around much longer than the people with aphasia, and perhaps their network, their lobby has achieved much more changes on their policy or in the government. But for people with aphasia, this has not been the case as yet. I think this is something which can work because life participation has to be multi-directional. It is not only to change. The direction of a life participation approach, as I have to say, is a market direction, is multimodal. It has to start even from changing the attitude of the person with aphasia, changing the attitudes of the people surrounding aphasia. Telling you that you are of the society in which they move. Perhaps look at the activities which there are. But most important, changing also the government issues, the policy issues, so to make the environment to enable the person with aphasia to participate. It is very different that in Greece, perhaps, we do not have this approach as you expect in USA. Because as I said in the beginning, there is very close family network, which take that role quite importantly, and there are cases that the family will take out the person, because their close family relations, the person will continue to participate in everyday activities with the family, and perhaps helping them to be as active in the social roles as they were before. Janet: That makes a lot of sense. You really need to think about the LPAA model with respect to the culture where a person with aphasia lives and where their families are. Let me ask you also, Ilias, in Greece, where you live and practice, how do persons with aphasia participate in speech-language treatment, and you've talked about there isn't really a practice model like LPAA, but it's more of folding the person with aphasia into the family. How do people with aphasia participate in speech-language pathology, and then move into the family? Ilias: Speech-language pathology in Greece is very new. So, some of the public hospitals do not have a speech pathologist, yet. The first graduates from the Greek programs is about 20 years ago. It's really new and most of them have been focused on pediatrics. The rehabilitation of adults and especially with aphasia is very new in Greece. Also now we have started having some rehabilitation centers. People with aphasia are facing rehabilitation on the acute states in the hospitals, people will stay there for three or four days, having the medical checkup, and then move to a rehab unit. In the rehab unit, which will stay for two or three months, they will have more impairment-based one to one therapy on a daily basis. And then, but surrounding them at the rehabilitation center, is always the family member, which will be visit them daily, taking them to activities and whatever. And then in most of the cases the person will move back to the family. They might continue rehabilitation with an outpatient, private speech therapist, which the family supports at home. This setup will help them integrate within the family network. And usually, you know, people are still looking after, say, if they are married and live as a couple, the woman or the man will look after them, take them out to activities that simply would come around, and help, and take them to the different activities and everyday events, helping them to go out and socialize within the family network. We are still in the network that people are visiting each other, you know, the social events and the family events very often, which is quite important. The person still carries on the routine, and there is the physical disability that might restrict the person to go out, but the family will find a way to communicate and have some activities of what they want to do. And usually, I will say, that the integration after is more related to the family. Now, that can happen, I will say about 70%, 75% to 80% of the cases. Still there will be cases with no family and no support or whatever. In that case, there will be some nursing homes. They're very limited, the nursing homes. Someone would go to a nursing home if they are totally dependent on physical abilities, like they cannot walk, not take food and tube fed or whatever. The rest will be with supports in the family. On the other hand, what has happened in the last years is that people pay privately, a carer to be with the person with aphasia, or an elderly person. Most likely the carer be an immigrant from another country and perhaps they do not speak the language. From that perspective, the family will go in and help this person. And that's how it helps. You have to look at what is a norm for an elderly person with aphasia. Not another person with aphasia, but what is known for an elderly patient in Greece. Say if someone retired, then what she likes to do usually in Greece, is to be close to the family and see the grandchildren, to be close to do some activities. Some of them they might have a summer house with they go and spend some time with the grandchildren there. So again, for a person without aphasia the activities will be surrounded the family. This continues to exit. So, if someone with aphasia has the grandchildren coming to his house and play, and he wants them, that will be a quality of life for him, to see them and play and communicate. This is very nice because this will give him a motive to do things for himself. But also, the kids will be aware of what is aphasia, and what happened, and that will increase in some ways awareness. Janet: It sounds like there is a lot of responsibility the family members assume for integrating the person with aphasia into the daily activities and their daily roles, and the fun and the work of family life. Ilias: This is happening in all aspects. The elderly people stay with the family, stay connected. You know, I will not think that Greek person will leave the parents away from them. It's like you know, they will help and will support them. They might not live together but there will be close family support Janet: Ilias, you work in a university clinic. At that clinic how do you implement the ideas of client- centered practice or LPAA in your work and your work with students, Ilias: I don't work directly with aphasia at the university clinic, I work on the voice and swallowing clinic. I teach about aphasia with my students. What I say to them is give them is examples from every day. Usually in my classes there is discussion of the psycholinguistic, cognitive neuro model. And also, there are different lectures of putting them into their functional or community participation approach with aphasia. There are no projects in Greece, like clubs with people with aphasia and community settings where they can go. And from one perspective, I'm not sure if we need that. First is from the family, from the personal view. You don't take the people who have aphasia and put them in another place with people with aphasia, to interact only among them. The point is to integrate them in the community activities and not to you know, go from the house to another room because they will meet another 10 people, unless there are community activities for them to do. The community activities surrounding it are doing the things which you can do before. What I tried to do with my students is first to teach them to find out what an elderly person needs; how the elderly person communicates. It is very common in Greece to have the coffee shops where people go and have a coffee and play cards. I said to them, go and play cards with your grandfather to see how he communicates, to see what he feels, to see what he needs. If you learn to play cards with your grandfather and your grandparents, you will learn to communicate with a person with an aphasia, because really you have to approach the level and the needs of that person. That is my philosophy with my students - go interact with the people on different events and not be so centered to yourself, and what you think. Go and find out what they want. So we tried to create activities within the class, which we will look on these different perspectives. There is no settings like nursing homes, which they have got people with aphasia in Greece, because people are living in their own homes, about 80% - 90%. The family is there. What we mean by the life participation approach is going back to the family life, going back to the community, because that is the most important to the person’s needs and he wants to be close with a family. Janet: As you're doing that, and teaching your students and role modeling, I imagine you might find some obstacles to actually implementing client-centered care. What obstacles do speech pathologists in Greece face? How do you and your colleagues work to mitigate those obstacles and implement the care principles similar to those of LPAA, when you're working with the patients with aphasia, Janet: First, you know, there are some physical obstacles. For example, if you live in a big city like Athens, in a block of flats, not all of them are accessible. For people to get out of the house is not always very easy. That is an issue, in general and is not like the United States, where you have homes on one level; people can park outside their houses and get in and out. Here it is totally different. It is like having access in place in New York City with steps to go up in one of these big townhouses. It is not easy for a person with aphasia. Think about it, if you live in a townhouse in New York with ten steps to climb and go in, a person with aphasia cannot do that easily; with a stroke, not with aphasia. This is a similar situation in most places in Greece. Even the new buildings have to have access for people with disabilities, but still, we have flats from the 1960s and 1970s, who do not have access. There are physical obstacles for people to come out and get involved. Then the other big thing which you have to change is the awareness of aphasia. For people to understand that this person does not have intelligence problem, and this is just a communication problem. And that the people, you know, have the executive function, to function and to communicate. People who do not have that in mind, you have to change this way of thinking. A few years back in Greece, people were saying, ”Oh, he had a stroke, now he lost his mind.” I believe this is nothing new, what's happened in Greece, this happened in other parts of the world, the thinking that aphasia affected the intelligence of the person. We tried to change that, to say that aphasia is something which you have. You lost the ability to use your language and to communicate, but still you are the same person, nothing has changed. You still have got your thoughts, your feelings, your loved ones, this has not changed. And as I told you, there is also some natural recovery in different ways. The example, which I gave you before, when we had the chat, when I saw my person from the village where I was born in Greece, when I was living in UK, there was no service for aphasia in Greece. He never had therapy and he was someone with Broca’s Aphasia and severe apraxia. His wife was taking him every day to the coffee shop, which he used to do, to see the same people and watching the people play cards, and he has found the natural way of communicating. That I think, is very important because he kept the activities. He kept the roles and that is the social model of the life of the patient. It does not mean life participation is to go to a club to meet other people with aphasia. Life participation means to return back to what you want, and what is your everyday activities, your family, and what it is important to you to do. That's what I tried to do with my students, tried to put them into this modality of thinking that you have to take into account what the person of aphasia is, and what the environment they live. It says a person should return to these roles are soon as they can. Janet: Those are wise words very, very wise words Ilias, I think, especially the idea about going into the coffee shop. That makes perfect sense is a way of beginning to communicate and establish a pattern between the two of you for communication. Ilias: Yeah, but this person did develop a pattern of communication with no intervention. You will say then, what would a speech-language pathologist do in this situation. And I will say, the speech-language pathologist will go there from the beginning, might work on the linguistic impairment at the same time, show his wife and facilitate all these changes in the life they knew, and perhaps, if she found a way, two months or three months down the line, to take him to the coffee shop. She should start doing that earlier, taking him out to everyday activities which he used to do before. Sometimes, you know, we have to think we are overreacting. Perhaps we have things in our mind, the therapist, which we say, “oh, you should do that, you should do that, you should do that.” The person really is not aware of what we're suggesting, you know, what I mean? We're very motivated for people to do more things and more things and get involved. But actually, the person, that is not what you want. Some simple things in life can make these changes. Janet: Exactly. Ilias: Give them this space to make the choices of what is meaningful to them. The thing, you have to take that into account, and that's what I say from the beginning. The behavior changes, not only the linguistic skills and on the family, but also to us. How we're able to understand as clinicians where to stop participating in the social interaction with them. Some people are lazy, some have got a different network.... /episode/index/show/aphasiaaccess/id/24530388

Episode #90: Texting for Success in Aphasia Rehabilitation - A Conversation with Jaime Lee 09/13/2022

Episode #90: Texting for Success in Aphasia Rehabilitation - A Conversation with Jaime Lee Interviewer I’m Ellen Bernstein-Ellis, Program Specialist and Clinical Supervisor 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. Today, I have the honor of speaking with Dr. Jaime Lee who was selected as a 2022 Tavistock Distinguished Scholar. We'll discuss her research interests and do a deeper five into her work involving the study of texting behaviors of individuals with aphasia and her efforts to develop an outcome measure that looks at success at the transactional level of message exchange. As we frame our podcast episodes in terms of the Gap Areas identified in the 2017 Aphasia Access State of Aphasia Report by Nina Simmons-Mackie, today's episode best addresses Gap areas: 5. Insufficient attention to life participation across the continuum of care; 6. Insufficient training and protocols or guidelines to aid implementation of participation-oriented intervention across the continuum of care; 7. Insufficient or absent communication access for people with aphasia or other communication barriers For more information about the Gap areas, you can listen to episode #62 with Dr. Liz Hoover or go to the Aphasia Access website. Guest bio Jaime Lee is an Associate Professor in the department of Communication Sciences and Disorders at James Madison University. Jaime’s clinical experience goes back nearly 20 years when she worked as an inpatient rehab SLP at the Rehabilitation Institute of Chicago (now Shirley Ryan Ability Lab). She later worked for several years as a Research SLP in Leora Cherney’s Center for Aphasia Research and Treatment. Jaime earned her PhD at the University of Oregon, where she studied with McKay Sohlberg. Her research interests have included evaluating computer-delivered treatments to improve language skills in aphasia, including script training and ORLA, examining facilitation of aphasia groups, and most recently, exploring text messaging to improve participation, social connection and quality of life in IWA. Listener Take-aways In today’s episode you will: Learn about why texting might be a beneficial communication mode for IwA Explore the reasons it’s important to consider the communication partner in the texting dyad Find out more about measures examining texting behaviors, like the Texting Transactional Success (TTS) tool. Consider how Conversational Analysis may be helpful in understanding texting interactions Edited show notes Ellen Bernstein-Ellis Jaime, welcome to the podcast today. I'm so excited that we finally get to talk to you. And I want to offer a shout out because you mentioned two mentors and colleagues who I just value so much, McKay Solberg and Leora Cherney, and I'm so excited that you've also had them as mentors. Jaime Lee 02:44 Thanks, Ellen. It's really great to talk with you today. And speaking of shout outs, I feel like I have to give you a shout out because I was so excited to meet you earlier this summer at IARC. We met at a breakfast. And it was exciting because I got to tell you that I assigned to my students your efficacy of aphasia group paper, so it was really fun to finally meet you in person. Ellen Bernstein-Ellis 03:11 Thank you, that is the paper that Roberta Elman was first author on. I was really proud to be part of that. I was excited to get to come over and congratulate you at the breakfast on your Tavistock award. I think it's very, very deserving. And I'm excited today that we can explore your work and get to know each other better. And I'm just going to start with this question about the Tavistock. Can you share with our listeners what you think the benefits of the Tavistock Distinguished Scholar Award will be to your work? Jaime Lee 03:43 Sure, I think first off being selected as a Tavistock Distinguished Scholar has been really validating of my work in terms of research and scholarship. It's made me feel like I'm on the right track. And at least maybe I'm asking the right kinds of questions. And it's also really meaningful to receive an award that recognizes my teaching and impact on students. And I was thinking about this and a conversation that I had with my PhD mentor McKay Solberg. And it was early into my PhD when we were talking about the impact of teaching and how important it was, where she had said that when we work as a clinician, we're working directly with clients and patients were hopefully able to have a really positive meaningful impact. But when we teach, and we train the next generation of clinicians, you know, we have this even greater impact on all of the people that our students will eventually work with throughout their career. And so that's just huge. Ellen Bernstein-Ellis 04:51 It really is huge. And I have to say I went to grad school with McKay and that sounds like something she would say, absolutely, her value of teaching. I just want to do a quick shout out to Aphasia Access, because I think they also recognize and value the importance of teaching. They have shown that commitment by their LPAA curricular modules that they developed and make accessible to Aphasia Access members, so people can bring content right into their coursework, which is helpful because it takes so much time to prepare these materials. So, if you haven't heard of these curricular modules yet, please go to the website and check them out. So yes, I'm so glad that you feel your work is validated. It’s really important to validate our young researchers. I think there's an opportunity to expand who you meet during this year. Is that true? Jaime Lee 05:40 That is already true. This honor has already led to growing connections with other aphasia scholars and getting more involved with Aphasia Access. I'm excited to share that I'll be chairing next year's 2023 Aphasia Access Leadership Summit together with colleagues Esther Kim and Gretchen Szabo. We're really enthusiastic about putting together a meaningful and inspiring program. I am just really grateful for the opportunity to have a leadership role in the conference. Ellen Bernstein-Ellis 06:17 Wow, that's a fantastic team. And I, again, will encourage our listeners, if you've never been to a Aphasia Access Leadership Summit, it is worth going to and everybody is welcomed. We've had several podcast guests who have said that it has been a game changer for them-- their first attendance at the Leadership Summit. So, we'll be hearing more about that. Well, I want to start our interview today by laying some foundation for your work with texting and developing some outcome measures for treatment that captures transactional exchange in individuals with aphasia. And let me just ask what piqued your interest in this area? Jaime Lee 06:57 Yeah, thanks. Well, before I got interested specifically, in texting, I had this amazing opportunity to work as a research SLP with Leora Cherney and her Center for Aphasia Research and Treatment. And we all know Leora well for the contributions she's made to our field. At that time, she had developed ORLA, oral reading for language and aphasia, and a computerized version, and also a computerized version of aphasia scripts for script training. And these were treatments that not only improve language abilities in people with aphasia, but I really had this front row seat to seeing how her interventions really made a difference in the lives of people with aphasia, and help them reengage in the activities that they wanted to pursue-- reading for pleasure and being able to converse about topics that they want to do with their script training. So at the same time, I was gaining these really valuable research skills and understanding more about how to evaluate treatment. I was also able to start learning how to facilitate aphasia groups because Leora has this amazing aphasia community that she developed at what was then RIC. I'm just really grateful for the opportunity I had to have Leora as a mentor, and now as a collaborator. And her work really helped orient me to research questions that address the needs of people with aphasia, and to this importance of building aphasia community. Ellen Bernstein-Ellis 08:37 Wow, that sounds like a really amazing opportunity. And I think it's wonderful that you've got to have Leora as a mentor and to develop those interests. Then look at where you're taking it now. So that's really exciting to talk about with you today. Jaime Lee 08:54 As for the texting interest that really started after I earned my PhD and was back at the Rehab Institute, now Shirley Ryan Ability Lab, Leora was awarded a NIDILRR field initiated grant and I served as a co-investigator on this grant. It was a randomized, controlled trial, evaluating ORLA, combined with sentence level writing. The two arms of the trial were looking at ORLA plus writing using a handwriting modality, versus ORLA combined with electronic writing or we kind of thought about this as texting. So we call that arm T-write. And ORLA was originally designed to improve reading comprehension, but we know from some of Leora’s work that there were also these nice cross-modal language improvements, including improvements in written expression. This was a study where we really were comparing two different arms, two different writing modalities, with some secondary interest in seeing if the participants who were randomized to practice electronic writing, would those improvements potentially carry over into actual texting, and perhaps even changes in social connectedness? Ellen Bernstein-Ellis 10:15 Those are great questions to look at. Interest in exploring texting’s role in communication has just been growing and growing since you initiated this very early study. Jaime, would you like to explain how you actually gathered data on participants texting behaviors? How did that work? Jaime Lee 10:32 Yes. So we were very fortunate that the participants in this trial, in the T-write study, consented to have us extract and take a look at their real texting data from their mobile phones prior to starting the treatment. So, for those who consented, and everyone, I think we had 60 participants in the trial, and every single participant was open to letting us look at their texts and record them. We recorded a week's worth of text messages between the participant and their contacts at baseline, and then again at a follow up point after the treatment that they were assigned to. And that was so that maybe we could look for some potential changes related to participating in the treatment. So maybe we would see if they were texting more, or if they had more contacts, or maybe they might even be using some of the same sentences that were trained in the ORLA treatment. We haven't quite looked at that, the trial just finished so we haven't looked at those pre/ post data. But when my colleagues at Shirley Ryan and I started collecting these texting data, we realized there were some really interesting things to be learned from these texts. And there have been a couple of studies, we know Pagie Beeson's work, she did a T-CART study on texting, right? And later with her colleague, Mira Fein. So we had some texting studies, but nothing that really reported on how people with aphasia were texting in their everyday lives. Ellen Bernstein-Ellis 12:08 Well, Jaime, do you want to share what you learned about how individuals with aphasia texts are different from individuals without aphasia? Jaime Lee 12:15 We saw that first, people with aphasia do text, there were messages to be recorded. I think only a couple of participants in the trial didn't have any text messages. But we took a look at the first 20 people to enroll in the trial. We actually have a paper out-- my collaborator, Laura Kinsey is the first author. This is a descriptive paper where we describe the sample, 20 people, both fluent aphasia and nonfluent aphasia, a range of ages from mid 30s up to 72. And one striking finding, but maybe not too surprising for listeners, is that the participants with aphasia in our sample texted much less frequently than neurologically healthy adults, where we compared our findings to Pew Research data on texting. And our sample, if we took an average of our 20 participants and look at their texts sent and received over a week, over the seven days, they exchanged an average of about 40 texts over the week. Adults without aphasia, send and receive 41.5 texts a day. Ellen Bernstein-Ellis 13:36 Wow, that's quite a difference. Right? Jaime Lee 13:39 Yes, even knowing that younger people tend to text more frequently than older adults. Even if we look at our youngest participants in that sample who were in their mid 30s, they were sending and receiving text much less frequently than the age matched Pew data. Ellen Bernstein-Ellis 13:56 Okay, now, I want to let our listeners know that we're going to have the citation for the Kinsey et al. article that you just mentioned in our show notes. How can we situate addressing texting as a clinical goal within the life participation approach to aphasia? Jaime Lee 14:14 I love this question. And it was kind of surprising from the descriptive paper, that texting activity, so how many texts participants were sending and receiving, was not correlated with overall severity of aphasia or severity of writing impairment? Ellen Bernstein-Ellis I'm surprised by that. Were you? Jaime Lee Yes, we thought that there would be a relationship. But in other words, having severe aphasia was not associated with texting less. And we recognize, it's dangerous to draw too many conclusions from a such a small sample. But a major takeaway, at least an aha moment for us, was that we can't make assumptions about texting behaviors based on participants’ language impairments, also based on their age, their gender. You know, in fact, our oldest participant in the sample, who was 72, was actually most active texter. He sent and received 170 texts over the week period. Ellen Bernstein-Ellis 15:22 Wow, that does blow assumptions out of the water there, Jaime. So that's a really good reminder that this to be individualized with that person at the center? Because you don't know. Jaime Lee 15:32 You don’t know. Yeah. And I think it comes down to getting to know our clients and our patients, finding out if texting is important to them. And if it's something they'd like to be doing more of, or doing more effectively, and going from there. Ellen Bernstein-Ellis Wow, that makes a lot of sense. Jaime Lee Yeah, of course, some people didn't text, before their stroke and don't want to text. But given how popular texting has become as a form of communication, I think there are many, many people with aphasia, who would be interested in pursuing texting as a rehab goal. Ellen Bernstein-Ellis 16:08 Right? You really have to ask, right? Jaime Lee 16:11 Yes, actually, there's a story that comes to mind about a participant who was in the T-write study, who had stopped using her phone after her stroke. Her family had turned off service; she wasn't going to be making calls or texting. Ellen Bernstein-Ellis Well, I've seen that happen too many times. Jaime Lee And when she enrolled in the study, and she was a participant at Shirley Ryan, because we ran participants here at JMU and they ran participants in Chicago. And she was so excited. I heard from my colleagues that she went out and got a new phone so that she could use her phone to participate in the study. And then her follow up data. When we look at her real texts gathered after the study at the last assessment point, her text consists of her reaching out to all of her contacts with this new number, and saying hello, and getting in touch and in some cases, even explaining that she'd had a stroke and has aphasia. Ellen Bernstein-Ellis 17:13 Oh, well, that really reminds me of the value and importance of patient reported outcomes, because that may not be captured by a standardized test, per se, but man, is that impactful. Great story. Thank you for sharing that. So well, you've done a really nice job in your 2021 paper with Cherney that’s cited in our show notes of addressing texting’s role in popular culture and the role it's taking in terms of a communication mode. Would you explain some of the ways that conversation and texting are similar and ways that they're different? Jaime Lee 17:45 That is a great question, Ellen and a question I have spent a lot of time reading about and thinking about. And there is a great review of research that used conversation analysis (CA) to study online interactions. This is a review paper by Joanne Meredith from 2019. And what the review tells us is that there are many of the same organizing features of face to face conversation that are also present in our online communications. So we see things like turn taking, and we see conversation and texting or apps unfold in a sequence. So what CA refers to as sequential organization. We also see, just like in face to face conversation, there are some communication breakdowns or trouble sources in online communication. And sometimes we see the need for repair to resolve that breakdown. Ellen Bernstein-Ellis 18:45 Yeah, Absolutely. I'm just thinking about auto corrects there for a moment. Jaime Lee 18:51 And they can cause problems too. When the predictive text or the AutoCorrect is not what we meant to say that can cause a problem.Ellen Bernstein-Ellis 18:59 Absolutely. Those are good similarities, I get that. Jaime Lee 19:03 I think another big similarity is just about how conversation is co-constructed. It takes place between a person and a conversation partner and in texting, we have that too. We have a texting partner, or in the case of a group text, we have multiple partners. There's definitely similarities. And another big one is that purpose, I think we use conversation ultimately, and just like we're using texting to build connection, and that's really important Ellen Bernstein-Ellis 19:32 Yeah, I can really see all of those parallels. And there are some differences, I'm going to assume. Jaime Lee 19:39 Okay, yes, there are some definite interesting differences in terms of the social aspects of conversation. We do a lot in person, like demonstrating agreement, or giving a compliment, or an apology, or all of these nonverbal things we do like gesture and facial expression and laughter. Those nonverbal things help convey our stance, or affiliation, or connection. But in texting, we can't see each other. Right? So we have some different tools to show our stance, to show affiliation. What we're seeing is people using emojis and Bitmojis, and GIFs, even punctuation, and things like all capitals. We've all seen the all caps and felt like someone is yelling at us over text, that definitely conveys a specific tone, right? Ellen Bernstein-Ellis 20:34 I was just going to say emojis can be a real tool for people with aphasia, right? If the spelling is a barrier, at least they can convey something through an image. That's a real difference. Jaime Lee 20:45 Absolutely, I think some of the problematic things that can happen and the differences with texting have to do with sequencing and timing. Because people can send multiple texts, they can take multiple turns at once. And so you can respond to... /episode/index/show/aphasiaaccess/id/24366618

Episode #89: Aphasia is a Complex Disorder: Mental Health, Language, and More – A Conversation with Dr. Sameer Ashaie 08/30/2022

Episode #89: Aphasia is a Complex Disorder: Mental Health, Language, and More – A Conversation with Dr. Sameer Ashaie Thanks for listening in today. I’d like to welcome you to this episode of Aphasia Access Conversations Podcast. I'm Katie Strong, Associate Professor in the Department of Communication Sciences and Disorders and Director of the Strong Story Lab at Central Michigan University and serving as today’s episode host. Today I’m talking with Dr. Sameer Ashaie from the Shirley Ryan Ability Lab. Before we get into our conversation, Let me tell you a bit about our guest. Dr. Ashaie is a Research Scientist in the Think and Speak Lab at the Shirley Ryan AbilityLab and a Research Assistant Professor in the Department of Physical Medicine and Rehabilitation at the Feinberg School of Medicine, Northwestern University. He earned is PhD in Speech-Language-Hearing Sciences at the Graduate Centre, CUNY. He is recipient of the 2022 Tavistock Trust for Aphasia Distinguished Scholar Award. Dr. Ashaie was also a recipient of NIDILRR's Switzer Merit Fellowship and NIDILIRR's Advanced Rehabilitation Research and Training post-doctoral fellowship. His lab the Shirley Ryan Affective and Emotion Rehabilitation Lab (SAfER) focuses on aphasia rehabilitation, particularly identifying post-stroke depression and related psychosocial disorders. He employs a variety of techniques in his research including eye-tracking and heart-rate variability. In this episode you will: Learn about the value of having researchers integrated into clinical care. Be empowered to think about depression on a continuum and why how we measure depression matters. Hear how network models can be a more useful way to examine complex disorders. KS: Sameer welcome and thank you for joining me today. I'm really excited about this conversation with you, and having our listeners get to know you and your work . SA: Thank you for having me here. You know I listen to the podcast, and I wasn't expecting to be here one day. So, it's a privilege being here. I KS: Congratulations on receiving the Tavistock Distinguished Scholar Award. Can you tell us a bit about the impact of receiving this recognition? SA: It's a big honor. You know, oftentimes as an early career researcher in the field of physiology or I guess any field me especially I'm wondering like, if I'm doing whatever I'm doing, is it making sense? Is it making a difference? Are people noticing it? So getting this award especially and people that have gotten before me and the work they're doing? It really validates what I'm trying to do as an indication of where I'm trying to take my research program and I’m hoping that it has an impact on people with aphasia, and as well as the broader research community. KS: Absolutely! I'm excited to start talking about your research. But before we get to that, I'd love to hear a little bit about how you came into the field of speech language pathology, because it wasn't a direct line. Your story is in fact quite interesting. And I think you refer to it as a winding path. Could you tell us a little bit about how you came to be working in the area of aphasia? SA: I started my PhD in theoretical linguistics, looking at generative phonology. And then I ended up taking a class with Dr. Loraine Obler. It was a class on the historical debates on language localization. And that really got me interested in language. After two years in theoretical linguistics, I switched tracks to neuro linguistics, communication science disorders. Because I really got interested in just language, more than just a theoretical perspective that I had as a linguist. And then, of course, there are two people that really had an impact on my career and continue to have an impact on my career. One is that I did my PhD with Dr. Jamie Reilley at Temple. And that's how I got interested into sort of the semantic aspects of aphasia. And he was really supportive and was really great in how we think about science and how we do science. And then I would say that the person who's had the most impact and continues to have the most impact, and really has made me think about this field is Dr. Leora Cherney. And I'm really indebted to her in terms of how I think about this field, how I think about our participants, how I think about how aphasia impacts their life in totality. And just seeing that kind of dedication and thinking about research that is support to impact people's life. And getting that inspiration from Leora. She has been really critical for me to really falling in love with this field, because you're keeping your participants at the center of the work you do. I mean, you might not see the impact, but you're trying to keep them that that is what your aim is. And I guess that's how I kind of came to this field, you know, some from sort of theoretical linguistics and interested in semantics and then getting a postdoc with Leora. And being inspired by her and the support she's given me to explore things. And carry a different line of research, but always keeping the participants in mind. KS: So, you’re a research scientist who works in a rehabilitation hospital. I’m not sure if our listeners know exactly what you do all day long. Would you walk us through a ‘typical day’ – if there is such a thing? What do you do in your lab? Would you talk us through that a bit? SA: Yeah, I, myself did not know what a research scientist is what I was doing! It was all new to me as well. It's different than a traditional academic position, and especially in a place like, Shirley Ryan AbiityLab, which is a rehab hospital. Especially the model in our rehab hospital is that researchers are integrated into the clinical care. So, what I mean by that is that our labs are situated right where therapies are happening. So even though we're not involved in therapy that's happening with the patients getting the care at that time, we can see different types of therapies. That might be OT (occupational therapists) giving therapy, or speech-language pathologists, physical therapists. So that's that integration. You really get to see patients. You get to see sort of different issues that you might not think about, because we're so discipline focused, right? So, it opens up your mind to all sorts of possibilities, collaborations, issues you might not think about. For example, physical factors are really important for people, but seeing that live and that being worked on, it has a different impact on you. The second thing is that, as a research scientist, you're not teaching classes. Your primary work is centered around research, which, which has its perks, but also that you miss sometimes that interaction, you might have had students in a traditional setting. Not that we don't get students (at Shirley Ryan AbilityLab), we do. But the primary focus is really getting the research program started. And there are no things like semesters, you have the whole year. We work on the hospital schedule. And as an early career (professional), a lot of what you do is dependent on how you get funded and that's how you established your lab. So we so for example, as an early career person, you might not necessarily have a lot of students working for you because we're not in a Communication Sciences Disorders department. So that's sort of different. But the main thing is that it's an academic environment, but it's not a university. KS: Yeah yeah you're right there in the thick of all of that rehab work. That’s fabulous. I had the honor of doing a tour at Shirley Ryan at one of the Aphasia Days before COVID hit and it's just such a beautiful facility. It’s just stunning. I love hearing about your path and a little bit about your work life and I've been interested in your research for a while now. I'm so excited to have this conversation. Your work in in mood and depression is something that really is an important area and I was hoping as we get started in this conversation if you could frame for us why this is such an important topic that extends to research and clinical work. SA: This is such an important question. And when I started my post-doc in the field of aphasiology, I was not interested in depression or mood. I was really interested in semantics. But, you know, talking to the patients being embedded in a clinical environment and talking to family members, everybody talked about the importance of mood, and depression. And what I realized is that everybody's talking about its importance. Everybody gives it a nod. But we're not all assessing it in a systematic manner. But we all recognize its importance, and people need this support. So, I started digging in and seeing in the literature what's going on. I came across this meta-analysis that was published in 2017, I think by Mitchell et al., and they looked at I think around 108 studies of stroke and only five studies with people with aphasia have looked at depression. I was like, that does not sound good. And then, studies that are in the field of aphasiology that look at depression used measures hadn't been validated in our field. So, I was like, we all recognize that this is an important problem and people need the support, but before we can go anywhere, that we need to figure out a way, how we can identify depression in people with aphasia, systematically. And of course, the big challenge I started thinking about that time is “how do you ask people that have language deficits about their inner feelings? Without sort of prompting them?” You know, we all use scales, those of us who do assess depression, we might modify them. But sometimes those questions are tricky to understand. And if you're modifying them, you might lead a person on to an answer. That's one thing. We can rely on caregiver reports for depression, and they're good. But we also know that those reports can underestimate and overestimate depression. And they're highly impacted by caregivers’ mood itself. That was another thing. So, I wondered what can we do that assesses this systematically? And we can also include people with severe aphasia, who we often just exclude from these studies and who might have some of these most issues when it comes to mood or depression. There's some work in neurotypicals, that use a variety of techniques. For example, eye tracking. Research has shown that people who are depressed, tend to look longer at sad faces, or stimuli that denote sad valence. And their response is blunted away from positive stimuli. For example, if people are depressed they might look longer at a sad face and they might also look away from a happy face. There is also work looking at heart rate variability as well which uses certain metrics that you could derive from variability in between your heartbeats might tell us something about depression. This is also true with the dilation of our pupils, or EEG. And of course, none of these measures are perfect. Like we know with anything, we're not getting perfect measurements. But I started thinking that “yes, they might not be perfect, but can I come up with an algorithm or some kind of a composite that takes all these things into account, because if they all point to the same problem, then that problem must be there.” So that's one of the things I'm trying to do right now is combine pupillometry, heart rate variability, and eye tracking to see if we can come up with some kind of a metric that can identify depression. That way, we can move away from language in the sense that we’re only using minimal language in terms of directions. We might just show people a happy face, or some emotion that some stimuli that denotes emotion. The second sort of thing, which is really important is that not thinking of depression as something you either have it or you don't have it. It's on a continuum. It could fluctuate. One day, you could have some symptoms. Another day, you might not have any other symptoms. Or in the same day, it might fluctuate. So, how do we assess that? Related to that is not just relying on some scores. For example, we all just take, like, let's say we take a common scale, like the PHQ-9 (Patient Healthcare Questionnaire-9th Edition) and we might take the scores, and we sum them up and say, “hey, this person they're above a cut off”. But in that kind of approach, we're also missing what these individual symptoms are doing. The person might not endorse every single symptom in that scale. But they might endorse some symptoms. So are we just going to say, “no, they didn't meet a cut off, but they had three symptoms that they were on the scale. For example, ‘I was sad. I was fatigued, I had a loss of appetite.” But everything else wasn't there. Are we just going to negate those symptoms? So how do we take these symptoms into account as well, when we are thinking about depression. Within the broader field of psychopathology, there's a lot of movement thinking about individual symptoms as well. So, I'm just basically taking that and applying it to our field. It’s nothing new that I'm coming up with, rather is just really seeing what people in the field of psychopathology are doing, confronting all these problems. And thinking about how this can applied to our field, because they might really have a direct impact on something we're doing when it comes to treatment, right? For example, if we start thinking about individual symptoms and that day a person is fatigued. Well that might directly impacted how they respond to treatment rather than just as a sum score. So that's another angle I'm taking when it comes to this work and depression. KS: That is so important. We all know what matters, but can you help us to know like, how big of an issue is mood depression in aphasia, you know, incidence prevalence or what, you know, do we know anything about that? SA: We do. And if you look at the literature, once again, they're so varied. Some papers might report 70%, some papers might report 30%. But I would say at least, it ranges anywhere from 30 to 70%. But I think a lot of that is also dependent on how we're assessing it. Going back to the scales that we are using and how reliable those scales are. There was a systematic review early on that indicated most of these skills might not even be valid. Are we use a caregiver reports? Are we supplementing that with something? In the general stroke population, we know at least 1/3 of stroke patients have depression. And with aphasia, it's between that 1/3 to 70%. It is most likely much more than that. But I think, to really get at it, we really have to start thinking about the tools we're using. But we know it's an issue because clinicians report it, patients report it, caregivers report it, whatever literature we have, which is not much, those studies report it. In our own study, we looked depression that might not meet the threshold for major depression. And we had around 20%, and those that meet (criteria) for minor depression, those were like, 18% or so. So, it's in that 30-40% range. It's a big issue. But I think the bigger issue is that we are really missing how many people have it? How many people have the different symptoms? And what we also have is an incidence rate, a snapshot of the incidence rate, right? Like, you know, at six months, at one year, but we really need to start thinking about daily and how sort of depression changes over time. It will not be sort of weekly or yearly, we don't have that much longitudinal work, either. When I talk about daily, I talk about real world as well. I don't know if that answers your question… KS: It does. Yes, absolutely. Yeah, I love that, that it's we have some ranges, they are not probably as accurate as they could be, because we don't have the right tools to assess it, and that they're just a snapshot that we're not really looking at this over time or, as you said that day, that daily basis. SA: One thing that I want to point out is that, and even with the lack of tools it’s good that we are still assessing for depression. I don't want to make it seem like that there's nothing out there. But I think like for all of us, even the tools we're coming up with, we should always be thinking in our own, how can we improve upon whatever we have. And we all get attached to the methods we use. But I think at the back of our head, we should always be like, “can we improve these methods? Can we do something better?” Because ultimately, it's not about us. It's about people, our patients, our participants, family members that we're trying to do these things for. So it's really great that tools do exist, but we have to be candid, that we might not be getting everything out of them. They're a great steppingstone, but we have to constantly go back and build and just keep on taking new developments in the field of psychopathology in the field of measurement science and applied to them so that our field is moving along as well. KS: It's kind of the essence of evidence-based practice, right? We're using the best tools that we have at the moment, but that certainly we need to be on the lookout for what's coming in the newer literature or tools. Sameer, you have some really cool projects going on related to depression and mood. You talked a little bit about them earlier, but could you give us a little more detail on what you've got going on? SA: So, one thing I could kind of hone in on that I mentioned earlier is on eye tracking. Right now we're trying to come up with some kind of an algorithm where we are relying minimally on language. So just the directions are language based. We're getting people in, and we're doing a combination of eye tracking changes in the pupil dilation and heart rate variability, as people are looking at different stimuli that denote different emotions. We have a paper out that looks at the feasibility of it. And what we’re basically looking at trying to quantify that using some existing scales and caregiver reports. Can we then take these metrics and see whether people are looking at sad or happy faces, or any other stimuli that denote emotions, and is that related to these traditional scales. And then how can we then come up with a metric based on these three measures, pupillometry, heart rate, and some of the eye tracking indices that can point out depression in people with aphasia? We're using these tools, but the approach is out there. Anytime people are validating new tools, they have to rely on existing tools and go through these different iterations. So right now, we're in the first iteration trying to see what kind of metrics we can extract and what those metrics can give us that are easy to use. And one thing is that eye tracking or heart rate variability over the years, they have become really accessible, and the tools are not expensive themselves. So, with the aim that down the line, can this be used in the clinical setting? Of course, we're far away from that. But that's the end goal, we hope as a quick diagnostic check. KS: Okay, yeah, that's what I was going to ask you, because we've got a lot of listeners who are clinicians. And, you know, sometimes as clinicians, it's difficult to see the relevance of things like eye tracking and heart monitoring, when you're reading literature, when you're trying to figure out, “How can I help this person right in front of me?” So, I was hoping you could explain a little bit why those tools to track variables are so important. SA: I think this is a great question. And I think the big thing is that sometimes we just need to demystify these tools. I liked the way you framed it. We really have to think of them as tools. They're tools that were trying to use to assess a problem that might be difficult with the traditional language measure. That's really it. It's not they are better than behavioral measures. It's that because people aphasia have difficulties in language... /episode/index/show/aphasiaaccess/id/24200454

Episode #88: Everyone’s an Expert: Person-Centeredness in the Clinic and Research -- A Conversation with Jackie Hinckley 08/09/2022

Episode #88: Everyone’s an Expert: Person-Centeredness in the Clinic and Research -- A Conversation with Jackie Hinckley During this episode, Dr. Katie Strong, Associate Professor in the Department of Communication Sciences and Disorders and Director of the Strong Story Lab at Central Michigan University talks with Dr. Jackie Hinckley from Nova Southeastern University about stakeholder engaged research and Project BRIDGE. Dr. Jackie Hinckley is Professor and Director of the Undergraduate Program at Nova Southeastern University. She is Board Certified in Neurogenic Communication Disorders by the Academy of Neurologic Communication Disorders and Sciences (ANCDS) and Fellow in Person-Centered Care. Dr. Hinckley is currently a Board Member of Aphasia Access and the National Aphasia Association. She is Executive Director Emeritus of Voices of Hope for Aphasia. She is Project Lead for Project BRIDGE, formerly funded by two PCORI Engagement Awards and now supported by NSU. She is the author of two books, Narrative-Based Practice in Speech-Language Pathology, and What Is It Like to Have a Communication Impairment? Simulations for Family, Friends, and Caregivers. She is an Editor for The Qualitative Report, and on the Editorial Board of Topics in Stroke Rehabilitation and Journal of Interactional Research in Communication Disorders. In this episode you will: Learn about the importance of including people with aphasia and clinicians in the research process to make the research better. Find out what stakeholder engaged research is and its importance in developing relevant evidence for clinical practice Hear how Project BRIDGE has enhanced stakeholder engagement in research related to aphasia. Be empowered to embrace your own expertise and the expertise of your clients and their family members. KS: Jackie, Welcome back to the Aphasia Access Conversations Podcast. I believe you were first interviewed on our podcast in 2016 – Episode #2! We now have over 86 episodes that are available! Who knew the series would have such staying power. It’s really amazing! Thanks for joining me today. I’m really excited about this conversation with you and having our listeners hear about what you’ve been up to lately and how that is impacting our clinical practice and the people with aphasia that we work with. JH: Well, thank you, Katie, for the introduction, and thank you to you and Aphasia Access for the opportunity to be on this podcast. I'm really excited to talk about these issues and talk about them with you. KS: Well, let's dig in. So, today's topic is “everyone's an expert”. How does that relate to our clinical work and our research? JH: Well, you know, Carl Rogers, the famous psychologist said that we are the best experts on ourselves. And I think that we all have that thought in our minds, but it really hits at the core of person-centeredness. An expert is someone with authoritative knowledge. So that has two parts, the authority and the knowledge. And an expert comes about when people agree that an individual has high performance or high knowledge in an area. I think that the idea of person-centered care in our clinical work is that we acknowledge that our clients are the best experts on themselves. And I think most of us who are practicing speech pathologists would certainly acknowledge that and agree with that. But in reality, in a normal clinical process, it's actually kind of hard to do. Because the clinician is, by definition, an expert, and has a certain degree of authority in the clinical interaction. So, for example, clinicians need to do an assessment and a diagnosis. And the client really can't self-diagnose, so there's an issue of authority and knowledge from the point of view of the clinician. But now that authority tends to seep into other areas like goal setting, where really the client needs to bring forward their own expertise about themselves. When we continue to exercise authority over what the goal should be, and yet, evidence shows that collaborative goal setting like goal attainment scaling significantly improves not just the immediate outcomes of therapy, but also how active the client is after they are discharged home. So, there's a tension around expertise. It has to shift back and forth during the clinical process. And a lot of times, it starts with the clinician having a lot of authority, but we have to know how to give our client that authority about themselves. So, it's only in the last decade or so that the idea of who's an expert and person-centeredness really has been applied to research. For example, if we think about a traditional research process, the researcher reads the literature and identifies the knowledge gap comes up with the experiment or whatever study that can contribute to that gap. And the researcher determines the design, the method, the measurement, does the research, publishes it and gets it out in a way that the researcher basically is crossing their fingers is going to have the impact that they hoped for. The problem is that it this ignores who is going to be affected by the research. So, aphasia in, our specialty in our world here, is, is always existing in persons. It's not something that we can be that we can study in a petri dish. So anytime we do research that has to do with aphasia, we need to be acutely aware that we're creating knowledge that is going to actually affect somebody's life. And so maybe this knowledge is going to affect how the aphasia is assessed or treated, or what we do to support people with aphasia, but whatever it is, it's the lives of people with aphasia that are being affected by this research. So, you know, let's step back a minute. And let's say I invented some new kitchen gadget, or a shoe or something, right. So. I'm the researcher of this new gadget. If I want to be successful in selling the product and having the product being used, I would have incorporated the views of people who might use it by trying out the products way before I ever try manufacturing and selling it because I need that feedback. I need to know if there are potential customers out there and whether they're actually going to use it. And the same thing really applies to research. So, if I'm a researcher and I create a new research product (a.k.a = knowledge, or study to create knowledge). If I create some research product, but I'm not an expert user of that knowledge, in other words I'm a researcher who doesn't do assessments every day or treatment every day, then I run the very great risk that I'm creating a product that can't quite be used by the people was originally intended for. If we really embraced person-centeredness in research, then we would start by thinking about who are the people who are going to end up being affected by this research product or this research outcome. And we would incorporate people living with aphasia, and also clinicians into our research, and that would make the research better. KS: Powerful stuff! I remember the Disability Rights initiative using a slogan, “Nothing about us without us.” JH: Yes, that is a great slogan that has been around for a while. And that definitely reflects the idea of person-centeredness. And I think we need to remember that slogan and everything we do, whether it's our clinical practice, but also in our research. And that's a little bit of a new way of thinking about research. So, research is not just about the people with aphasia, sometimes it is, but a lot of times it's also about what are the best practices in clinical activities. So, we need to include both people with aphasia, their families, clinicians, maybe policymakers, other people who are really the stakeholders who are affected by the research products that we make, and they need to be involved in planning and doing the research and saying what kind of research would be most helpful. KS: I'm thinking a lot about researchers out there, Jackie, you and I included. We have clinical experience. So maybe they have a good idea of what clinicians need to know from research. JH: You know, I have heard this from some people saying, “Well, I've been a clinician, so I know.” And maybe that's true. I think that people like you and I, who have been spent a good amount of time being clinicians in our past, probably are ahead of the game. In a sense, we might have a better sense of what we don't know, right? Because we've been out there doing it. But I will, in my opinion, I think researchers who aren't actively out in clinical settings, and they mostly aren't, still aren't quite totally up to date with the current challenges that are being faced by people. Anthony Bourdain, the celebrity chef said, “Just because I like sushi doesn't mean I can make sushi.” So, I think we may think that…but if we're not right in the thick of it, we may not know as much as we think. And we need to bring in the experts who actually do know what it's like to do that daily clinical work. KS: Point well taken. This leads us to the idea of stakeholder-engaged research. What is it? JH: The term stakeholder engaged research is an umbrella term. It covers a lot of different approaches to the idea of bringing in individuals who are going to be affected by the research to actually help can plan, conduct, and disseminate the research. So, there are various ways that stakeholders can be involved in research. They could be consultants, or they could be co-researchers, and full collaborators. In the case of a co-researcher, they help come up with research questions, help design the research, pick the outcome measure, help with data analysis, or interpretation, and even contribute to dissemination of the research results. We have found that people, family members, clinicians, other stakeholders, and people with aphasia can participate it fully as collaborators in all of these things if they so choose. KS: Amazing. I know there are a few examples of this kind of research in Ireland. For example, Ruth McMenamin …. and also, in Denmark Jytte Isaksen is doing interesting work, and of course there is Ciara Shiggins in Australia….what about in the US? JH: Yeah, so in other places, like in Europe, as you say, in Australia, I, you know, I think they've been a little ahead of the United States in terms of understanding that they need to bring in the people who are affected by research into the actual conducting of research. And that also brings up the point that I said, stakeholder engaged research is an umbrella term. There are many different terms and in some other countries, they also use different terms for this. But I'm using stakeholder engaged research here, because as you point out, it really is the term that's coming to the forefront here in the United States. So, in the United States, and in our all of our ASHA journals, we unfortunately have very few examples of stakeholder engaged research, where clients and family members are fully engaged collaborators are involved. There's only a handful of studies. So, it hasn't been a widely used approach in our field yet, but I think it's growing quickly. KS: What makes you think it will grow quickly? JH: There are three broad reasons why I think this is changing fast. First, I think the idea that people who are being affected by something – whether it be a policy, regulation, legislation – is taking a broader hold in certain areas of our lives. For example, in academics where we have student-centered learning. Second, research funding agencies in the United States are starting to value, and therefore reward with funding, research projects in which stakeholders play an important role and make a substantial contribution to the research project. The most important landmark in terms of funding agencies in the United States is the creation of the Patient-Centered Outcomes Research Institute, called PCORI. It was created as part of the Affordable Care Act in 2010 and it was charged with funding comparative effectiveness research – in other words, research that would help patients and clinicians what is the best treatment for them. Their slogan is “Research Done Differently”, and I think that captures that the research they are producing is not at all the kind of traditional research that we mentioned earlier. PCORI is funding all kinds of health research across many disciplines in innovative ways. This is really changing the landscape of research and research funding, because other funding agencies are starting to follow their lead. The third reason why I think stakeholder-engaged research will grow quickly in our field is the experience we’ve had with Project BRIDGE. KS: I’ve been a Regional Coordinator and also a member of a few research teams for Project BRIDGE. Honestly, it’s been a gamechanger for me in how I think about approaching research. Can you tell us about how Project BRIDGE got started? JH: Sure. So, 10 years ago, I was at a conference called the Clinical Aphasiology Conference. And for anyone who's not familiar with that conference, until the last couple of years, the only people who could attend the conference were people who submitted presentations. So, this means the conference in that sense rather exclusive, and that the audience, the people who are present at the conference, were really only researchers. So, 10 years ago, I was at this conference, listening to three days of presentations, all about aphasia treatment and I suddenly realized that we're all researchers talking to other researchers about aphasia treatment, but no one at the conference was either using the treatment as a clinician or receiving the treatment as a client. So, I said to some of the folks at the meeting, “There should be some people with aphasia at this conference. We're talking about their treatment.” And the response I got 10 years ago was, “Well, they don't really belong here.” The timing of that was one year after PCORI, became really active and started funding initiatives. Around the same time, we had done a project with the Sarasota Aphasia Community Group, which is a fabulous group, if anyone needs a referral in that area. They run themselves. The group is really great. We asked their members to come up with ideas about what research they think would be important. We talked to them about research, and we set them off. So, they were off on their own and we did not interfere with this. They had their own group meetings and came up with the research ideas. So, they came up with 22 ideas. Now most of their research, and by the way, these were really good questions. And most of them, you know, were formulated pretty close to how we would normally formulate research questions. I mean, they did a fabulous job with very little information about research. Most of their research questions were about the best treatment for different kinds of language issues. For example, “What's the best treatment for being able to produce sentences?” But then they came up with some really special questions that I don't think that you or I even despite all of our clinical experience, and our research experience, I'm not sure we would come up with these questions. For example, they wanted to know, “How can the speech pathologist engage the person with aphasia, not just do rote exercises, but rather connect with the aphasic as a personality, tailor the therapy to the individual needs?” KS: Wow, that's mind blowing. And that's 10 years ago, right? JH: Yeah, yeah, maybe even more than that. And by the way, I said aphasic. I'm reading what they wrote, so I just wanted to let everyone know that those are their words. Another question they came up with was, “What is the effect on the person with aphasia if they do not like their speech pathologist? or ‘The speech pathologist doesn't understand the patient's needs or doesn't customize the therapy towards them?’” Wow. I think as clinicians, we probably know, in our hearts that when we don't have a good match in terms the rapport between the clinician and client, it probably doesn't go that well. It's not the best outcome. We all know this. But we don't know very much about it from a research point of view. And then another question they came up with was “What makes a speech pathologist excellent?” These are from their point of view. It was just people with aphasia and family members coming up with these questions. KS: Wow, well I’m certain that I wouldn’t be able to come up with those types of questions. They are so meaningful and important. They really get right down to what’s important, don’t they? JH: Yeah. I'm really pleased that we were able to publish that paper with the founders of the Sarasota Aphasia Community Group. They were co-authors. They were equal collaborators with us in the project. That was published in 2014. And then two years later, in 2016, we submitted a proposal to PCORI, when I was the Executive Director of Voices of Hope for Aphasia. And although that first proposal was not funded, we got great feedback. When I read the feedback, I thought, you know, if we make this actually a little bit bigger, maybe it's going to be successful, which is not always the way you go. But we partnered with the University of South Florida. So, it was Voices of Hope for Aphasia and University of South Florida. And that was funded, and that proposal created Project BRIDGE. The first two years of funding allowed us to create a working conference. The goal was to bring together people with aphasia, family members, clinicians, and researchers to form collaborative research teams. One challenge with this kind of work and you know, it's this is not just in the world of aphasia, this is any health domain that uses this kind of stakeholder engaged research. So, one challenge is that researchers know about how to do research but other people who aren't researchers don't know so much about research. On the other hand, researchers are not experts on daily clinical processes, nor are they experts on living with aphasia. So, we created some video trainings, and some of them were for people with aphasia and family members to learn more about the research process, and some were for researchers about communication supports role dynamics, and plain language. Because, you know, most researchers have never been trained in doing this kind of collaborative research. So that conference was held in October 2018. And after a two-day meeting, 11 research teams were formed. And you were there, Katie. KS: Yes! Project BRIDGE was a career changing experience for me. I had invited two of our Lansing Area Aphasia Support Group members, Chris and Ruby, to join me, and we flew down to Florida together. I think from that beginning of travelling together to a conference set a stage for something different. Actually, Chris’s sister, who lived in Florida joined us at the conference too. None of us really knew what to expect, but from the very beginning, we all knew this was different. At the conference, I remember just having my mind blown that there were over 100 people attending the conference- many who had aphasia or were family members whose lives were impacted by aphasia. One of my favorite parts was when we were in our teams, I had a team about storytelling and aphasia, and everyone was brainstorming on research questions. The training, the collaboration, the energy, it was really impactful. I’d love for you to tell our listeners more about Project BRIDGE. JH: So, after that conference, we were very happy that these research teams were formed and there was so much energy. And I want to say that, you know, from the very beginning, before we even got funding, we had an advisory team that was made up of people with aphasia, families, clinicians, and researchers. And so, after the conference and a little bit of follow up with our teams. The whole advisory team was so excited, and we there was so... /episode/index/show/aphasiaaccess/id/23923152

Episode #87: Tailored LPA interventions for dementias: A Conversation with Becky Khayum 07/26/2022

Episode #87: Tailored LPA interventions for dementias: A Conversation with Becky Khayum Welcome to the Aphasia Access Conversations Podcast. I’m Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire. Today, I’m joined by Becky Khayum. Biosketch: Becky is a speech-language pathologist and specializes in providing person-centered care for people living with different dementia syndromes. Over the past 15 years, she has held leadership positions in rehabilitation centers, assisted living communities, memory care communities and home health environments. In 2009, Becky co-founded MemoryCare Corporation, a therapy company specializing in providing care for families coping with dementia. Becky currently serves as the President of MemoryCare. In 2020, she co-founded Cognitive Concierge, which provides digital services and programs for people living with cognitive challenges. She has been involved in research initiatives in Primary Progressive Aphasia at the Northwestern Mesulam Center for Cognitive Neurology & Alzheimer’s Disease. Becky speaks nationally to train healthcare providers and families on how to creatively apply the life participation approach for people living with dementia. Take aways: Learn about applications of the LPAA framework to individuals with dementias, including primary progressive aphasia (PPA). Learn about tools you can use to implement LPAA interventions with individuals with Alzheimer’s disease and PPA. Learn about several key authors/researchers/clinicians in the areas of dementia interventions that should serve as starting points for learning about person-centered care in dementias. Learn how to frame person-centered, LPAA goals for persons with dementias, including PPA. Learn how to document so that LPAA interventions are reimbursable for Medicare and other insurance providers. Interview Transcript: Jerry Hoepner: Hi Becky so glad to have you with me today and really looking forward to this conversation. Becky Khayum: Well, thanks for having me Jerry I’m looking forward as well to our discussion. Jerry Hoepner: You know, I was mentioning to our listeners that if they weren't familiar with your work, they really need to explore your work, because there's just so many important connections about the life participation approach applied to individuals with progressive diseases like dementias and so forth. We know that, at least in the Aphasia Access circles you're well known for your person-centered life participation approach for individuals with dementia, including the individuals with primary progressive aphasia. Can you share just a little bit about how you got connected with Aphasia Access and the life participation approach? Becky Khayum: So, so I’m sure others have the same story, but I was going about my ordinary day and I get a call from Audrey Holland and she's so excited and says there is this summit, and you have to go and begins to tell me all about it, and you know, of course, said Aphasia Access you know this is new and I had you know, the summit is new and I had actually hadn't heard of Aphasia Access at that point, which was surprising considering I tried to you know base my clinical work on person centered care and I was so sad because I actually couldn't make of the first [Aphasia Access Leadership] Summit but of course, I went to the Aphasia Access website at that point and signed up, and it was startling and I was so delighted because, “Oh, my goodness, everything that I am trying to think about as the clinician and train other you know speech language pathologist on is completely captured and this one group with so many leaders in our field,” so that is how I first got connected. Jerry Hoepner: Oh that's fantastic I didn't know that story but I kind of figured that was one of the connections, I know that I had spoken to Audrey I don't know if it was that the first or the second Aphasia Access Leadership Summit and she just spoke so she raved about you and the great work that you were doing and was just so excited that you were a part of the organization so that's fantastic and like you said a lot of people have that connection. So it was fabulous that a few weeks back to have a conversation with her again on a podcast and recognize her lifetime of just brilliant work so she's been a mentor and an encourager for so many of us so fantastic. Becky Khayum: Absolutely 100% yep. Jerry Hoepner: Well, you found a perfect fit and a perfect home in Aphasia Access and I, as someone who loves working with individuals with aphasia my passion is really with people with cognitive disorders, with traumatic brain injuries and so forth, as well, and I just think the life participation approach has so many applications that are much broader than aphasia and certainly we're excited to talk with you today about those applications as they're made to individuals with dementia and including your work on primary progressive aphasia as well. Becky Khayum: sure. Jerry Hoepner: Absolutely you you've done some great interdisciplinary work with a team of professionals about dementias I’m really interested, I have been reading your work on the care D model and just want to get your thoughts on the relevance of that model to dementia care and maybe talk us through some of the different types of dementia syndromes and their typical symptoms and the way that they present themselves I guess. Becky Khayum: Sorry, Sir absolutely so I’m during my you know collaboration in research at the Northwest Western Mesulaum Center for Cognitive Neurology and Alzheimer’s disease, I had some amazing mentors there who developed this care pathway model: Darby Morhardt, you know Sandy Weintraub, Dr. Mesulaum, and Emily Rogalski. Really learned everything there that from them that I now know about the different types of dementia syndromes you know, and so they developed the care pathway model, you know for people living with dementia and really the model highlights that there are different types of dementia syndromes with very specific symptoms depending on where that neurodegenerative disease starts in the brain and it was really trying to promote awareness that you know Alzheimer’s dementia, with the memory loss isn't the only type of dementia syndrome and therefore there really needs to be tailored care and interventions for the different types of dementia syndromes and really, how do you adapt those interventions over time. How, you know just that huge need for psychosocial you know, support and so anyways that's the basis for the care pathway model so they you know in that paper they describe. Some of the different dimension syndromes that have very distinct symptoms, so of course we know you know Alzheimer’s dementia, with the hallmark you know deficit of that short term episodic memory loss that you first see but then, you know you may have language reading and writing symptoms that first appear and get worse over time and, as in primary progressive aphasia. Another example would be for those neurodegenerative diseases that more cause deficits in behavior and personality changes, as in the behavioral variant of frontal temporal dementia and then also another syndrome, that I don't think is as well known, is where the neurodegenerative disease starts in the occipital lobes so you have you know vision difficulties that's caused by you know cortical deficit and so that is posterior cortical atrophy so you know this, the care pathway model then describes and I know we'll talk about more of this podcast. Okay, how do you can tailor the interventions given those different types of symptoms right? Jerry Hoepner: Right and that's a big part of that that care model right that tailoring not only to the type of dementia, but to the individual that you're working with, and as I read the article I think the word tailor comes up about 100 times. Becky Khayum: Absolutely right and that's such a good point it's not just to the symptoms. It is to that actual individual and the way their symptoms impact their daily life so completely corresponding with the LIFE participation approach yeah. Jerry Hoepner: Absolutely, well that's actually a really good lead into my next question. We have a lot of information out there about the LIFE participation approach for aphasia but are there differences in the way that an LP might apply the LIFE participation approach for people living with a progressive condition. Becky Khayum: Sure, absolutely you know, so I think in terms of how you might evaluate and write goals for someone with a progressive condition. The overall philosophy, with the LIFE participation approach you know, in my experience that doesn't change too much you know you're really doing that motivational interview you're learning. How their whether it's aphasia or memory loss or behavior you know behavioral changes. How was that preventing them from participating in the activities and conversations, they want to participate in, so I feel like that that part isn't you know. Really distinctly different. What is different? One thing is in terms of how people develop these symptoms, over time, so it's obviously for many people very gradual. That their first noticing the symptoms and then they're getting worse over time, so they do have the ability to already developed some different compensatory strategies that they find or helpful too. Their care partners also find that are helpful to manage some of these symptoms so compared to having a stroke, where it's just suddenly everything it has changed so that's important to consider as you're forming your goals, but what goes along with, that is, the risk of social withdrawal, so you know it's kind of the opposite usually have someone with a stroke, you know, we have all this social withdrawal and in the beginning, but then as they're going. Through the rehabilitation process and then long term the goal is to reintegrate them, you know into the Community with those social interactions with different dimensions syndromes it's quite the opposite, you know at first there perhaps staying pretty connected and then, as things get worse. Then we're starting to see that withdrawal So how do we help to prevent that? Um I think another difference in terms of therapy is that you really need to anticipate that they are going to progress in their symptoms. And how do we anticipate those future needs, so we may or you know actually need to introduce strategies, especially compensatory strategies? Before they're actually needed and then also knowing over time that we have to be realistic in the goals that we're setting and knowing. That you know, increasing care partners support, increasing the use of visual aids and whatnot those will likely be needed for them to meet that life participation goal. The goal should not be getting them more independent, it should be understanding that they're going to need some more support so Those are some of the key differences, I think, with a progressive condition. Jerry Hoepner: And I think that makes sense, and I know you talk a lot in your work, about the importance of counseling and education, as you know, to let people know not just the individual with dementia, or whatever the progressive condition is, but their partners that are care partners as well. Becky Khayum: Right absolutely. Jerry Hoepner: You know, as you as you think about those differences and I, like the way that you said from your standpoint it's not a whole lot different, right? I know that you've written a little bit about the focus on debilitation versus rehabilitation and I’m thinking about how that might apply more broadly to even stroke-based aphasia right. So, I know Michelle Bourgeois writes about the flip the rehab model, and it seems like a lot of those principles of you know, focusing on the positives and keeping people engaged are really pretty shared I don't know if you have thoughts about that. Becky Khayum: I know, and certainly with the flip the rehab model, you know, Dr. Bourgeois has been my mentor you know I remember first attending one of her talks at ASA and of course Audrey had already told me, you know you need to connect with Michelle and I was just so energized you know and it completely changed the way that I thought about assessment in terms of really yes flipping that around and how that goes right along with the from you know live participation model because we're having more of a client directed assessment and goal formation, rather than yeah the clinician doing that yeah absolutely. Jerry Hoepner: Well you're really natural with transitions between questions because I was just gonna talk to a little bit about goal setting, I know that you've written about this in a couple of really nice papers and one of the things I value about them is that they are so practical and so easy to digest for everyday clinicians and all of us, to be honest and you wrote a paper in 2015 with me Emily Rogalski and then he wrote another in 2015 with Rachel Wynn and talked a lot about goals for individuals with dementia or primary progressive aphasia from an LPAA standpoint and just really interested in your suggestions and thoughts about that goal writing process. Becky Khayum: Oh, absolutely and I, we certainly already touched upon this and the last question where you know I tell us if you aren't using a person-centered kind of the flip the rehab model assessment. Overly for anyone with any type of cognitive deficit, but particularly for those living with dementia syndrome. If you're not doing the right type of assessment then you're not going to be able to formulate the right types of life participation goals. So, certainly, I think, in some graduate training and externship you know, say, a fly training I think some clinicians are very used to having to give a standardized test and a score and certainly that's where Dr. Bourgeois really says well that should come last you know really develop. You know, what are their needs? What are their goals? and then investigate what specific impairments. Auditory comprehension memory loss might be impacting their ability to meet those goals. So, the first you know suggestion is it's that purpose product mismatch if you're diagnosing someone that's great you know use your impairment, a standardized test, but you will not be able to form a life participation goal. If you're using an impairment based standardized tests and then the other barrier, I think that we've talked about recently on an Aphasia Access panel on documentation. Was the electronic health record systems are designed for it and impairment based goal writing? I mean you just click, click, click. Okay, they have aphasia well great here's generative naming you know and whatnot if they have memory loss will are they oriented, and so it leads clinicians to automatically form and pyramid vehicles so that's where we'll talk, maybe. Later in the podcast about how can you secure reimbursement, you know for people living with a progressive condition, but as far as goal writing you know. Certainly, again very similar to anyone with TBI or stroke and just aphasia what are their goals, how did they want to increase participation in life activities? Writing out those goals with them, and a lot of times I use, who are the people you want to talk with you know, following a from where are the environments that you want to talk with people. Or that you can't participate in because of your memory loss, because your behavioral or visual deficits. And then, what are you know what specific topics or activities, you know, do you want to talk about our participate in so. Really, I use those prompts to help write the goals and then the only real difference than is making sure that the level of care partners support and the accuracy and the use of aids and supports that it's realistic that we're not trying to say 90% accurate in Japan it so that would be the biggest tip about goal writing you gotta be realistic, especially over time. Jerry Hoepner: Absolutely, and I appreciate carrying that through that idea of the flip the rehab model into the goal writing in I know you're a big proponent of motivational interviewing as am I, and one of the things that William Miller always says is don't ever do an impairment based assessment on your first interaction with someone and that's what we in so many times that's what people do right they begin with that and it's like. The biggest killer of relationship build building that you could you know, and when you're trying to find out what does this person want and need to do and what kinds of things will help support that yeah so beginning with those questions as a better place, then. Becky Khayum: Yes, for sure Jerry Hoepner: yeah absolutely. So, how would you apply the life participation approach for someone living in long term care with behavioral challenges things like that? Becky Khayum: Certainly, yeah and I think that's a tough one, you know, and certainly one where you absolutely need collaboration with occupational therapists, social workers, counselors you know that are also involved in the individuals care and certainly also you, it is sometimes difficult to directly in you know intervene with the person, you know, in terms of this is an intro you know intervention that directly changes the person in their behaviors. It's really more we're changing the environment around them and we're educating staff members in more you know memory care communities or Assisted Living and family members to provide the environmental supports and communication strategies visual supports and certainly that's difficult, you know. Dr. Natalie Douglas, as you know, done a lot of research on caregiver support in long term care. And so that's certainly another topic, but yeah for someone with behavioral challenges in terms of utilizing the life participation approach I think Jennifer Brush. You know just another lady, you know expert in long term care, using the Montessori approach um she always says, you know a lot of times whether it's Alzheimer’s dementia or behavioral difficulties. People have a lack of a role, you know, and in some you know you have to get to the root of what's causing the behavioral challenges but oftentimes they don't feel like they have a role anymore, and a purpose in life, so I always like to start there and then also certainly do the environmental assessments, working with OT. Really training family members and staff members keep a behavior log you know let's actually see what the triggers might be so we can better think about interventions. But then again holistically will what sorts of activities and passions did they have prior to coming to the long term care community, and how can we figure out a way to modify that activity and if we allow them to participate in that? And you know, certainly, we often will see a reduction and those behaviors we don't need pharmacological management, which is so often what you know places do and just a quick example of that you know one. I met a professor, who had just been moved to a memory care community separated from his wife and was just so confused about why he was there, and you know incredibly respected expert in in so many different areas, people and so he was hitting you know people at the front desk asking to call his wife, you know every five minutes. And so, when I came in, you know they said always an artist we've been trying to get them involved in art activities and whatnot but he doesn't want to. Um so talking with the family, you know, I was able to quickly learn know people address them is Dr., you know, a professor, first of all, second of all he realizes how his art isn't the same and the quality of what he used to do so, he doesn't want to participate in that he loves to teach. That's what he wants to do. And so we were able... /episode/index/show/aphasiaaccess/id/23864439

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