Show Notes - Episode

Next STEPS: In conversation with Professor Ian Kneebone

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.

I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's host for an episode that will feature Professor Ian Kneebone from the University of Sydney Technology.

Biosketch:

Ian Kneebone Professor and Head of Discipline (Clinical Psychology) at the Graduate School of Health at the University of Technology Sydney. He is a chief investigator at the Aphasia CRE and has led and co-facilitated much of the work on optimizing mental health and wellbeing for individuals with aphasia. His work on illuminating the stepped care model as a guide for clinicians working with individuals with stroke has helped speech-language therapists and other rehabilitation disciplines to better understand their roles in psychological care after stroke and specifically aphasia. He previously joined the Aphasia Access Conversations Podcast with me for Episode #34. We're excited to have Ian joining us again, as so much work has taken place in the area of psychological and psychosocial interventions for individuals with aphasia in the past five years since that previous podcast conversation. Professor Kneebone and his colleagues have been at the center of that work, including developing and evaluating the ASK trial, the Kalmer relaxation program, collaborative goal setting, Reducing Emotional Distress in Stroke (REDS)and low intensity psychotherapeutic interventions, among others. In addition to Professor Kneebone's large-scale investigations about psychological interventions, Ian is a clinician at heart, also very engaged in hands-on clinical work, where he directly collaborates with speech-language pathologists and other disciplines. I'm privileged to discuss these topics with Ian today.

Take aways:

• Need for psychological care for people with aphasia: People with aphasia have higher rates of depression, anxiety, and other psychological needs. People with aphasia are twice as likely to be anxious or depressed as someone with a stroke without aphasia.
• Stepped care model provides direction: The stepped care model helps us to define scope of practice and where we fit in, based upon our level of training. It also provides guidance for psychological care that all speech-language pathologists/speech-language therapists are trained to implement.
• Behavioral activation: This is a direct connection to the Life Participation Approach for Aphasia (LPAA). Increasing engagement in personally relevant activities is at the heart of both approaches.
• Ian discusses where solution-focused brief therapy and acceptance and commitment therapy fit into the stepped care levels: With additional training, good evidence is developing for these approaches.
• There is a need for ongoing psychological supports in the chronic phase of recovery: Increased mood state is associated with better physical and communication outcomes AND dealing with the physical and communication issues can improve mood state.
• Shifting to "compensation" can make people with aphasia feel like they're not going to recover further: We need to make sure that we have conversations about those shifts so that people don't misperceive that shift as the end of progress.
• SLPs/SLTs need to train mental health professionals to use supported communication techniques to support their interactions: SLPs/SLTs may need training on how to teach other disciplines to support communication.
• People with aphasia should be involved in co-design work to address psychological interventions. From a research perspective, we need to involve people with aphasia and from an intervention standpoint, we need to involve individuals with aphasia.

Interview Transcript:

Jerry Hoepner:

Today, it's my pleasure to introduce Professor Ian Kneebone. In Kneebone, is professor and head of discipline in clinical psychology at the Graduate School of Health at the University of Technology Sydney. He is a chief investigator at the Aphasia care and has led and co-facilitated much of the work on optimizing mental health and wellbeing for individuals with aphasia. His work on eliminating the step care model as a guide for clinicians working with individuals with stroke has helped speech language pathologist and speech language therapist and other rehabilitation disciplines to better understand their roles in psychological care after stroke, and specifically aphasia. He previously joined the Aphasia access conversations podcast with me for episode 34. We're excited to have Ian joining us again. As so much work has been done and taken place in the area of psychological and psychosocial interventions for individuals with aphasia. In the past five years since that previous podcast conversation, Professor Kneebone and his colleagues have been at the center of that work, including developing and evaluating the Ask trial, the calmer relaxation program, the collaborative goal setting, project and low intensity psychotherapeutic interventions among others. In addition to Professor knee bones, large scale in investigations about psychological interventions, Ian is a clinician at heart, also very engaged in hands on clinical work, where he directly collaborates with speech language pathologist and other disciplines.

I'm privileged to discuss these topics with Ian today. I'm excited to dig into this conversation. And I'm really interested in talking a little bit about your perspectives about kind of the intersection of speech language pathology, and psycho psychotherapeutic interventions, psychological care, those big topics in general. And I know that in our past conversations, we've discussed a little bit about just the profound need for psychosocial psychological interventions for individuals with aphasia and the kind of the lack of access to care for mental health providers, to individuals with aphasia. So maybe we can start out a little bit by just sharing your thoughts on the role of speech language pathologists in addressing communication-based psychological supports for individuals with aphasia and their families.

Ian Kneebone:

Well I think the first thing is to say that the whole stroke team should take responsibility for psychosocial issues and challenges, both from a prevention point of view, but also an intervention point of view. Where there's the potential to do so. Particularly with people with aphasia, the speech pathologist, or speech language therapist's role is a real standout one. And we know frequently that this work, because of the communication problems, often falls to Speech, Language Therapists to, you know, by their own admission, feeling unprepared to do it. So, I think there's certainly the will there from speech language therapists to be involved in this work, we just need to provide the right training the right scope of practice, and to get things going. So, this this gap in services is filled. You know, you were talking about the rates of psychosocial issues, but we do know that if you've got a stroke, and you've got a phase, you're afterwards, you're twice as likely as someone with without aphasia after a stroke to be anxious or depressed and have very, very high rates. Even clinical levels of depression are common. I guess it's not surprising anyone who works in the area will know that, but it's still very sobering to restate that statistic.

Jerry Hoepner:

Yeah, it sure is. Just speaks to the tremendous amount of need and, and obviously, we know the tremendous amount of unmet needs for people with aphasia and their family members as well. Just because of how we're barely scraping the surface of this issue, I think, but making some good progress in those directions, you've done some really foundational work on the Stepped Care Model for stroke and even other populations as well. How can SLPs draw upon that model as a way to help them to understand scope of practice issues, to understand where they fit and kind of guide their interventions?

Ian Kneebone:

Well, I think Stepped Care has been really useful. And I've gotten great feedback on this not that I invented step care by any means. But certainly, the improving access to psychological therapies model from the UK started this off in mental health. But the opportunity is to convey and allow people to know where they can work and what's appropriate, and when they might need to refer on or co-work with, with another profession. And the Stepped Care Model really does that. So, people are able to say, Well, I'm involved in this group, it's designed to prevent things like depression and anxiety, which are very common, as we just said, and I'm able to learn these skills or apply these practices to improve outcomes and prevent this. But you know, at some point, when these levels of symptoms of such and particularly questions of risk, risk of self-harm, risk of suicide, those sorts of things, when commonly people would refer on to mental health professionals. And I think the unique ability of speech language therapists to provide supportive communication training for mental health practitioners and so on, means that the role goes beyond just prevention, and to actually intervention. But also, to say that the model where people stepped and matched to the level of care they need, means that, you know, there is a scope of practice beyond prevention for speech language therapists, and that's those therapists who choose to train in psychological practices and psychotherapies. So, we do know, for instance, there's some strong work going on at the City University in London, where they're looking at training Speech, Language Therapists in a particular sort of Solution Focused therapy, which is very well regarded as an evidence base. And that's provided by speech language therapists, with the right training and the right background, to develop the competencies and know how to manage risks, and so on. So, the Step Care Model allows people to see where they're at in terms of their scope of practice, when they're on or when, if they want to, what skills they might need to practice at a at a high level.

Jerry Hoepner:

Yeah, that's really well, well explained. And that's actually a really nice segue into my next question, because I know, the Step Care Model that you presented back in 2016 identifies some specific psychological interventions. So, you talk about motivational interviewing, cognitive behavioral therapy and a number of other approaches. I'm just interested is their kind of a plan in mind or a process in mind that will help to identify other interventions and kind of where they fall to give mental health professionals, speech language pathologists, and other disciplines, kind of a sense of where those other interventions fall. So, things like dialectical therapy and so forth?

Ian Kneebone:

Well, there's a range of therapies that we've found useful for people with, with mental health problems, and obviously, it's the application of those to people with aphasia that's the point of interest. And we do now have very promising work going on cognitive behavior therapy for people with aphasia, we've just completed a case series, which is just been accepted by Neuropsychological Rehabilitation, looking at modified CBT for people with aphasia, which is really exciting. We're doing stuff on behavioral activation, which is very promising for people with aphasia and relaxation therapy, we've just completed some case series work, looking at that. And that's really exciting because that was co-designed by people with aphasia, and then then then launched based on that very solid foundation. The more interesting or the very interesting work is being done on some of these, what we call third wave Cognitive Behavior therapies, which are things like Dialectical Behavior Therapy and Acceptance and Commitment Therapy, for instance. And a lot of that's been leveraged off the brain, the general brain injury literature now where people like Dana Wong, who's from LaTrobe University here has done some seminal work looking at modifying for people with cognitive and communication problems, Acceptance and Commitment Therapy. Reg Morris from Plymouth University in the UK has done some great founding to work with some of his PhD students and looking at Acceptance and Commitment Therapy for both carers and people with aphasia after stroke, you did mention before, it's easy to focus on, of course, the client or the patient with aphasia, but you know, the need goes beyond that, because the ripple effect of the, of the impact of the communication and, you know, the disabilities that commonly come with stroke as well goes to a person's social circle and familial circle, and including those people in therapy is, is an important part of the investigation as well. Absolutely.

Jerry Hoepner:

It's so common, we have partners who are socially isolated as well, just because they're the primary communication partner for that individual with aphasia, and whatever restrictions to participation, they feel, right, it's just all connected.

Ian Kneebone:

When I teach my clinical students, I often say like, you no, you've got an identified person who's been referred to you, but you've got to realize that nearby, there's going to be someone who's just as anxious and depressed, if not more so. But at that point, and that we do know, there's a reciprocity between anxiety and depression, that person with aphasia, and, and a significant care person. So, it's really important to include those people in therapy if you can, but being mindful of not including it in a way that adds to the significant burden and challenges. So it's got to be done in a really appropriate way without asking people for things that they're not able to provide, because they're just coping with things like role changes, financial issues, and you know, the loss of the person as the relationship they had with them on account of communication.

Jerry Hoepner:

Absolutely. And, as you were talking about that, it makes me think about how that changes over time as well. So those initial kind of burdens, that might be a tough time for them to engage in those kinds of conversations, because like you said, they're just trying to keep their head above water and trying to make it through everything else, all those other role changes and additional roles they've taken on. But I wonder about your thoughts in the chronic phase as, as both the individual with aphasia and their partners start to make those adjustments, if maybe that's an opportunity for some of those interventions.

Ian Kneebone:

Those often talk about that that phase is life after stroke. And that's usually about 12 months later, when we know pretty much how people's rehabilitation has proceeded. And people are pretty much aware of how they will be functioning on into the future. And as you say, I think there's a there's a sort of a crisis point when someone's having their stroke. And there's that kind of acute phase where people are adjusting, but the important thing at that time, people think well, my personal, my personal looking after, or I'm going to get better and so on. But it's when that realization happens. So, we find these sorts of emotional difficulties can occur early or later after, after a stroke, with or without aphasia, of course, and that, you know, it's important that people's needs be met, on into the future, the recovery phase in life after stroke. Because many people when we've done this in our qualitative interviewing and surveys by places like the Stroke Association, UK, that people often the 12 months, a lot of the care, a lot of the treatment or drops away. And then as we were talking about the feeling isolated, and well, this is all I'm going to get, and so on, people are really challenged at that time, and we need to be able to provide, you know, supports and therapies on into the future for those individuals. You know, depression, anxiety content, you know, is pretty consistent at any time after a stroke. And when we're really bad at predicting, I think, you know, who's going to be affected at what state so we're going to be going to be vigilant, and we have to be, you know, particularly vigilant, I guess, I'm probably preaching to the converted with your audience here, but that we know that people are anxious and depressed out of stroke effects, their functional outcomes, and including the communication outcomes and so on, you know, if somewhere, you know, I remember seeing someone with a with a swallowing problem and the Speech Language Service was very concerned about this. And they had a day of good mood, and they came to a day hospital party, and now reading these party pies like there was no tomorrow's person's actual ability to swallow. Now I'm not saying it wasn't about risk was altered by their mood state and that that goes across the continuum of the areas which speech language therapists are involved with. So really important for outcomes and not just mood outcomes. You know, being depressed or anxious is distressing in itself. But you know, the ability to make a difference to people's physical and communicaiton outcomes of addressing psychological issues is considerable.

Jerry Hoepner:

Yeah, I like the way that you describe that as being so intertwined and interconnected. So, you can't just separate those pieces out and say, I'm dealing with the physiological issues right now. Now I'm dealing with the psychological or the psychosocial and emotional issues, because there's so interconnected and, and I want to go back to a point you made earlier, which is, so often people early on have that sense of I'm going to be this, it's, I'm not going down the road a year, I'm not going to be one of those people who needs this. So, I'm just going to, you know, nose to the grindstone kind of work through this right now. But it can pop its head up anywhere in that recovery. And, and I think there's some reality that sets in once some of those initial supports are taken away.

Ian Kneebone:

I mean, one of the biggest challenges I've faced when I've been in in stroke rehabilitation, and working with Speech, Language Therapists is around when people are using compensation, being asked to use compensation, as a strategy for communication and kind of dealing with all that mean, I'm not going to get any better with my speech. And, and, and, you know, people get really angry, and it's their frustration, and so on, and there's, you know, therapists going to be blamed for it. So, there's a real, real strategy there for dealing with that, and, you know, working with people to retain, retain hope. But you know, being pragmatic with well, you're leaving the hospital, now, you're going to have to communicate there in the community, you want to get out and do some of the things or at least some of the things you used to then how are we going to do this? And how are we going to approach it? But yeah, it can be quite a crisis point.

Jerry Hoepner:

And I Yeah, and I think part of our role as a speech language therapist in that context, is to communicate that really well in a way that doesn't set them up for oh, you're switching over to compensatory approaches that you that means you think that I can no longer improve, in terms of my abilities, but rather to convey this is one of several things that we want you to do to be more successful, and to continue to engage. That's, I mean, that's kind of for speech language pathologists who are supposed to be good at communicating those things. We don't always do a very good job of communicating those things. I was thinking a little bit about Deborah Hersch's work on transitions and discharges and how poorly we do and saying, This is what's going to happen. We've got these limitations of the system. But this is the plan, this is not something that you did wrong, this is something that we just need to work through. And when we, I think when we feel discomfort about conveying things like it's time to transition home, or it's time to transition out of therapy, that we don't do a very good job of explaining those things.

Ian Kneebone:

Well, I've certainly worked with a lot of members of stroke teams, allied health and speech pathologists, but one of the one of the difficulties, of course, is when we feel uncomfortable about doing it, and it's not the news, people want to hear we kind of beat around the bush. And then when people aren't clear, and you've got people with cognitive and communication problems, it's kind of a perfect storm for it to go amiss. Yeah. So, I think one of the messages I give out is people think if they just communicate it really well, it'll all be fine, and it'll go work fantastically, and people will transition really smoothly. But it's a bit of a wakeup call to realize, however well you put it, this is sometimes news people don't want to hear, and that there's going to be a reaction to that. And just to appreciate that it's not necessarily your fault. But there's the reaction that is it is people becoming aware of limitations going into the future, not the not the recovery they wanted, but the recovery they've got and supporting someone through that is a challenge when sometimes, you know, you're the target of dissatisfaction.

Jerry Hoepner:

Right? No, that's such an important point. Just being cautious of that as well. Because certainly, certainly that's an important thing to consider. I'm interested in the process of interprofessional collaboration with mental health professionals with psychotherapists. What are your thoughts on the best way to approach a collaboration or setting up a collaboration with a mental health provider rather than an "oh, this person's got needs beyond what I can provide? Take them off my hands."

Ian Kneebone:

It's just so essential. One of the struggles we've had is that you know many people in my own profession, which is clinical psychology will say, well that this person can't communicate, I can't provide them with therapy. And that's so disappointing because we know if we modify them, we can do that. But certainly, my clinical experience in collaboration is that, you know, working closely with a speech language therapist about the best ways to communicate with someone they've, you know, very thoroughly assessed, is really useful in allowing me to learn and, you know, I work in session with, with therapists, as well as you know, gaining assessments and information and talking to them about that before it. And really importantly, there's a lot of in the research we're doing about collaborating, particularly with collaborating, particularly with speech language therapists, to be able to do those sorts of prevention work and, and therapies we've, we've discussed. And that's been such a joy working with Amanda Lakute, and some other people on that work, and Miranda Rose's team in looking at optimizing mental health and wellbeing in designing, for instance, Jas Sekhon's work, we know, on teaching Speech, Language Therapists, you know, counseling skills, so that they feel competent to support people that first step on the ladder, but also dealing with how speech language therapists can obtain the skills. And also really importantly, this is bringing onboard people with aphasia, to the co-design work, to design things that we know will be effective with them rather. So, we're not doing things to people, we're doing things with people and looking at the best way of designing our interventions. And not just our research, but our clinical interventions, so that they translate well into the different environments, healthcare environments that we work in.

Jerry Hoepner:

Absolutely, and kind of three really important points for a speech language pathologist, one, having that training to feel more confident and comfortable with actually carrying out those level one, psychological interventions, but also having training on how to teach mental health professionals how to interact. So, training those communication support strategies is a big part of our role. And if there should be something that we're comfortable with, we should be comfortable as speech language pathologist with training others on how to use those communication supports and

Ian Kneebone:

Jas of course is a speech language therapist, Jas and she has got such a great course and such a nice way of delivering that in the speech, language therapy world that it's, it's so nice, and then people say, well, Ian, can't you go and teach us in counseling and like, you know, I'm happy to provide counseling training and different psychotherapies. But, you know, the role model that people like Jas provides in saying, well, this leads, not only can Speech Language Therapists use these therapies I can try and others in them because, but you also know, it's a competency within, within the scope of, of every practitioner really. Yeah,

Jerry Hoepner:

absolutely. And, and I think sometimes we forget about that piece, kind of think it's a given that we're going to be able to train other professionals, but I think, also, there's a little bit of that uncertainty, when you're working with someone else about expertise and roles and territory and all of those things you might kind of back off in terms of providing the thing that you are the very, you know, what is your kind of bread and butter, your biggest strength in terms of teaching those things. So, I agree, Jas is fantastic, and the work that she's done in that area has been just so helpful and moving us forward from an educational standpoint.

Ian Kneebone:

I guess as a psychologist, I kind of assumed a lot of that work would be the net training was available in courses but as we know, from the surveys and so on, but it has been a bit hit and miss despite the demands and like guidelines, like the Royal College in, in the UK, for people to have those roles, and then it's kind of I know, it's hard to fit everything into the into courses, because there's so much new material on different ways of intervening and assessing, but it's such a core skill that it's good to see that those who may have missed it on the way through that they're released post, you know, these master courses that provide people with to fill in that gap.

Jerry Hoepner:

Agreed. And again, there's a lot of a lot of training that still needs to happen yet and a lot more changes to happen in the graduate student training programs for speech language pathologists as well.

Ian Kneebone:

When I'm talking to you from Australia, of course, and we're no exception here despite you know the leading lights that we have in this country for speech pathology and trading and communication and counseling skills for people with aphasia we're still working on it here and I know from your surveys, that's still a challenge in the US as well. So, it's a piece of work in progress.

Jerry Hoepner:

Yeah, it definitely is. At least there's some awareness of it. And we're starting to make a little bit of ground, I think in terms of awareness. And definitely when we have international programs for training, speech language pathologists and speech language therapists from a counseling standpoint, but also for working together collaborating on research internationally, I think that bodes well, for our future, I think we're moving in the right direction. I want to return.. Oh, go ahead.

Ian Kneebone:

No, no, I'm just agreeing with you. So Oh,

Jerry Hoepner:

Oh gotcha. I want to return to the other point that you made about codesign, with individuals with aphasia, involved in that process. And I might have you talk a little bit about the relaxation program that you co designed the calmer program and kind of how that was set up. And what you've learned from that?

Ian Kneebone:

Well, we pretty much it's run by Rebecca El-Helou, who's a PhD about the completed a PhD with me, and she's done a range of work, including the Kalmer project, which is part of what we call REDS, which was Reducing Emotional Distress in Stroke program. And we just thought, like, you know, relaxation, it's, it's one of these things that we know works with the general population really well. And, but it's not offered to people after stroke generally, or wouldn't necessarily people with aphasia after stroke. And so one of the things we wanted to do by that is, you know, start developing the evidence base, and we thought, you know, really, there are all these great relaxation programs out there, but will they work with people with aphasia, I mean, the advantages, of course, they can be very communication life, because of the nature of the interventions, you know, which is about, you know, focusing attention, reducing autonomic arousal, using breathing and so forth. So, they can be very nonverbal. So, with you, this is eminently suited, and it's also something that could be online, it can be on your phone, right. And it's such a great thing in terms of accessibility. So we work with people with aphasia, because we thought like a lot of, despite the low level of communication required, that it may not suit everybody, we weren't going to assume that people with aphasia would, would take to it necessarily, and we're so pleased that we got a group I think about 10 or 11, people who were involved with us in looking and going through the, the sort of standardized programs, and then looking at how we could reduce down the communication, and how we could also, you know, just make it user friendly, and whether people needed to care or not to support them in, in getting them online to do it. And just really tightening up something and tailoring it to people with aphasia. So, we've got about two levels of communication, for instance, which people can dial up depending on their needs. And, you know, and while I say we will talk with people with aphasia, we also of course, include speech language therapists and uh Brooke Ryan, you may have heard her doing her work, she's out in western Australia at Curtin University now doing a great job in, in looking at psychosocial work with people with Aphasia out there. And, you know, certainly it was gone, guided by all the current guidelines on supporting people with aphasia, not only to do the relaxation training, but to communicate their views on the relaxation training and how we might modify it to be more appropriate. So that was great. And we also have recently done behavioral activation study, there's just been a publication in Aphasiology about behavioral activation, which is an intervention, which, at its simplest, is a getting people re engaged with their environment, doing things that they enjoy that they've got mastery over, and they value. And also looking at how it can produce an online program that would support people once again, with or without a carer, to undertake that in a really accessible way assessing accessible communicatively but also because it's online, it's available at the time of your own choosing. And we're really lucky we may not be known as well internationally is in Australia, but we had a lot of work from the Black Dog Institute here, which is developed a lot of online programs. So, we also benefited from their huge expertise in this area, in, in developing something that we hope is going to be really great for people with aphasia and, you know, just get the resource out there. I mean, some of the work we've done is trying to get, you know, health services to be out able to offer treatments but you know, getting clinicians with the time. And you know, getting resources to do that is a real challenge. So, you know, we've got to go with where people may be able to access things themselves through Stroke Association, stroke, foundations, those sorts of things, where possible, so that we can get things out there and kind of like, circumvent all the problems of resourcing in the health community, which, you know, we've got a very different approaches to healthcare in the US and Australia, but the same, the same struggle in trying to get resources to people. And so, we're just looking across the board and how we can do that in this online stuff, particularly with the assistance of real experts, like Black Dog has been a great opportunity here. And we're just like, inevitably looking for funding for the next stage where we can roll it out and provide an evidence base to how useful this might be to people with aphasia after stroke.

Jerry Hoepner:

I think that's so useful. And I want to kind of make the connection between behavioral activation and the Life Participation Approach to Aphasia interventions that Aphasia Access stands for. And that's just such an important part of everything that we do from a life participation approach is increasing that participation, finding ways to get people reengaged in authentic, meaningful things that they care about. So, I want to make that connection. And the way that that might look for individuals could be part of a community group, it could be an aphasia camp like we offer, and I know that Linda Worrall's group started at a camp in Australia a couple of years ago as well. So they've got a couple under their belt, or, and I think I like this extension into the accessible online format that can reach as many people as possible, even if that's like the way that gets them into the loop, because I think it's hard initially to, to invest in going someplace or becoming a part of a group, things like that. But certainly, there's something to be said about once you're in and once you have that success that comes with having the right supports and having peers who understand you, then it's a little bit easier to take that next step, I think,

Ian Kneebone:

Oh, absolutely. And like the across this kind of leisure rehabilitation is something our occupational therapies, therapists colleagues talk about, and the behaviors talk about environment enrichment and so on. And, you know, battle activations, all in that ballpark, and really important for people, as you say, it's certainly part of, you know, Miranda Rose and her team are doing work on community aphasia groups, which are kind of exciting, because they're led by people with aphasia, once again, because of the resources, issues that happens with, you know, trying to fund these sorts of activities. And, you know, there's, that's certainly an important part, and also meeting in the group, as you know, is a valuable, enjoyable experience, both in terms of the support from right from people, you know, looking at what other people are doing, and getting engaged with that, but also, you know, being on a similar journey, and the support that that can give to other people's is, is really valuable, I think, is as part of the process that leads to the positive experiences from those groups.

Jerry Hoepner:

Absolutely. And I, and I hope our listeners I got pretty savvy listeners, I hope they pick up on that connection as an important way to return to those meaningful activities and to have a positive effect on mood and other psychological domains.

Ian Knebone:

Well, watch this space because the works, you know, the initial works being done, but they're rolling it out in Australia, where they've just got some, some country-type areas involved in offering this training to people. So they've developed some really comprehensive training things for the materials for the people, the professionals that support this program, but also for the people with aphasia who lead the groups. There's a PhD should Kathryn Pettigrove, who, who you should get a podcast on, she's just amazing and excited about this work, and you may have seen her in the US recently, but such talks with such enthusiasm about it. So, I would recommend that to you and your listeners. And as the evidence comes out, and it's going to be a great model, I think for helping people to help themselves. Really.

Jerry Hoepner:

Absolutely. And you're right, we definitely need to get her on this podcast. I'll write that down as soon as we're done, make sure that we follow up with that terrific point. (See episode 86)

Episode #86: Making Aphasia Groups Work

Ian Kneebone:

And she's just so enthusiastic, new energy coming into the, into this area, not that there's a lack of energy, but it's just nice to see that, you know, a few people hanging on the baton.

Jerry Hoepner:

Absolutely. Yeah. It's great to great to spread that out. Because there's so much to do. There's no no lack of things to do in this area, for sure. I'm interested in your thoughts. You talked a little bit about Jas Sekhon, but your perspectives on training, both future speech language pathologists who are in their training programs and existing speech language therapists pathologist who are already working clinically in seeking continuing education. Can you talk about some of the keys from your perspective to making that education successful?

Ian Kneebone:

The first step is, you know, there's still a little bit of work in saying this, you know, convincing people this is part of their role, because some people will, will think, Well, no, I just hand this over to the psychologists that I you know, I don't think we can, we can accept that but, but moving forward. With that, it's really integrating, you know, the right, you know, say step one type interventions like problem solving, behavioral activation, relaxation therapies, and so on, right in into training courses, because these, these are things that, you know, people say, what's a psychological therapy? How am I going to do that? Well, it because it's psychological therapy, it doesn't have to be done by a psychologist is the first point. And a lot of it's kind of manualized and fairly intuitive to professionals. And many people come and say, you know, problem solving, and I've been dealing with all these challenges in my life already. And this just makes such sense. I wish I'd kind of it just, I should have known this already. Because, you know, I'm a slight person, I've got a master's degree in speech, and language therapy. But you know, it's so useful to me as well, and handing over to my clients is just really great. I mean, we do know, there's some work that's been done in the UK looking about Peter Knapp and his colleagues at looking at problem solving as a prevention and, you know, really good RCT results on how that prevents, you know, psychiatric psychological symptoms after stroke.

Jerry Hoepner:

Absolutely.

Ian Kneebone:

So, I think it's just rolling out and getting people to be to get over their concerns about and Jazz Jazz program. If you would, then that's, you know, specific counseling skills, but also then add some of these other strategies in. And we've got some experience in doing that recently. It's with step care, Carolyn Baker, who's at Monash University here in Melbourne, has been doing some work with with both online and offline online because of COVID in rolling out these therapies with allied health practitioners, including psychologists, but also Speech, Language Therapists, and being able to do that, and the main thing is just the kind of the structural issues in, you know, adding to people's workload, and allowing the system to support the investment that will, you know, lead, as we say, not just to people coping better with things but also improve, you know, the functional outcomes after stroke. So, while that's been a bit of a mixed feast, in terms of, you know, outcomes, because it's just been so hard to get these systems to take on board the training and get, get the people through these very straightforward psychological interventions that we know will almost certainly benefit people. But we're doing that, as I say, a two-pronged approach, we're looking at the self-help co-design work that can go online and so on and be accessible that way. And also trying to, you know, train every day, healthcare workers in being able to provide these to people with aphasia.

Jerry Hoepner:

Absolutely, and when you say, fitting in to people's schedule, or their workload, I mean, I just think that goes both ways, because not addressing these things really limit your outcomes in terms of, kind of, like you said, the communication outcomes are going to improve as those psychosocial outcomes begin to improve.

Ian Kneebone:

You know, it's short sighted not to make this investment. But you know, doesn't mean it'll net. And so, you know, the logic doesn't necessarily follow, right. In terms of what happens with healthcare resources. And the other thing is, I guess, we're talking about all what suspects with therapists, fleet Language Therapists role is really important that not to throw the baby out with the bathwater is that, you know, like, if someone's communication can improve their depression and anxiety will improve as well. So, you know, as I often say, when I'm talking to training other allied health people, you know, we've all you know, you've all abandoned the session because someone said or stressed or upset and so on. But if you keep on doing that, something's got to change. You can either refer them on or do some collaborative work with somebody, but not, you know, not stopped doing the OT or the physio or speech language therapy, because you know, those things have to come along with as you were saying earlier, they're all joined up.

Jerry Hoepner:

Absolutely, no, that's a, that's a really great point. And they all have to happen simultaneously to be effective, for sure. Ian earlier, you were talking about Carolyn Baker's work, her recent work, and I'm really interested in the low intensity psychotherapeutic interventions from the eDelphi study. Just wondering about kind of your thoughts on what the place is for those you mentioned occupational therapist, physiotherapist, speech language therapist.

Ian Kneebone:

This is Carolyn's most recent work, which is the last data we kept it in the middle of this year has been rolling out training to people, you know medical nursing, speech language therapists and also psychologists in kind of first level step care for people with stroke. So, people were enrolled in the program, and some was telehealth some was not. And they would then choose one of three therapies that they thought might suit them best. And that would be problem solving behavioral activation or relaxation therapy, and then they'd have seven sessions of therapy with that. So these were people who weren't necessarily psychological therapists, although some were providing, providing these sessions within a current health system that's operating day to day with the practitioners from the current health system, rather than you know, someone coming in and doing a great RCT. But then the resources disappear, and you go away, no matter what you prove, one way or the other. And that's been a real eye opener, I mean, that there were major challenges when we started that because of COVID, because so many healthcare workers, as I'm sure there were in the, in the US were, were redirected to other tasks to do with the epidemic. But we've soldiered on, and got that it's a really great learning experience to see. See how that went, how it was rolled out. And we've got one at a time and qualitative evidence that we're going through, it's starting to sift through at the moment to look at what we can really learn from that project about how we do this going forward. I mean, I do not at the moment, it's just that that redirection of resources, particularly under COVID, was so difficult. And that was perhaps a unique time. But the resources, as I was saying earlier, are always under scrutiny and precious. So, right. It's about I think, partly getting the evidence base and so on. So we were talking about relaxation therapy recently. And I've got the irony of people saying, well, you know, you put it in a grant application to do to demonstrate the treatment efficacy, and people said, well, it's relaxation therapy, why wouldn't work? Of course it will work. And then, and then the people say, well, we can't put it in policy, because there's no evidence base. So you kind of you know, it even the same, the in the same grant round. Yeah. And so we're just doing it anyway, we're doing it with PhD students, we're doing it with, you know, startup resources that Miranda Rose in the Center of Research Excellence in Aphasia Rehabilitation in Melbourne have got hold of for us. And we're going to demonstrate the usefulness. So, people will put it in their guidelines and so on. And then the UK National Stroke guidelines, say all this great stuff about some relaxation training, we do the same, but there isn't sufficient, not sufficient numbers, significantly power to demonstrate efficacy and so on. I'm just really grateful they mentioned some of Vaour work. But then I kind of have well, yes, but and, you know, that means it's not rolled out. I used to work in a stroke rehabilitation word in Vatum, in the UK, and we had a number of Allied Health assistants, you know, physiotherapy assistants who've gone off and done all this training in how to do relaxation with people that didn't get any time to provide. So it's kind of like, oh, gosh, you know, it is hard to, sometimes to, to get this happening. But you know, I think there is saying that, but there is kind of a, it's a right time. And you were talking to me before about, you know, five, you know, psychosocial guidelines for people with aphasia, and so on that were being developed. And I think the more that we do that, the more the ability will be there to leverage those resources to people who need them.

Jerry Hoepner:

Agreed. I think that is a really good place to start to wind down our conversation because I think we're moving in the right direction. Still, still plenty of work to do, but I'm wondering, kind of as a as a summary are there are two or three things that you think speech language therapist, working with people with aphasia should keep in mind from a psychological intervention standpoint, and what's a good starting point?

Ian Kneebone:

Well, I think it's probably the three things I do is like, you know, take it on as part of your work to be aware of these, these these issues and try not to shy away from As tempting as that may be. So, the first thing is, you know, there are good instruments for now that we have screening for anxiety and depression so you can pick those up and they're well within your skill base to use. And then getting the skills and training and things like counseling if you don't have them already, or you don't feel confident in using them, and then getting access to some of these other things. So like Caroline's work, you know, we're hopefully the publish the manual shortly that can guide people, speech language therapists in using those treatments. So that will be something that's out there and a resource that people can use. And once again with it well within the competence of, you know, speech language therapists. And I think finally, you know, just using the great communication skills you've got, even when you're sort of giving people difficult news to receive that. And just being as clear as you can be, you know, how to do the communication. And, you know, kind of accepting people are going to be frustrated. But, but giving it the clarity and the justification in a way that retains people's hope for further recovery but it's pragmatic, to get them functioning as well as they can in the community, because that's so much of the key to people going forward.

Jerry Hoepner:

Absolutely. And that's, that's our whole goal to get them reintegrated as much as possible.

Ian Kneebone:

So, awareness, skills, communicating effectively regarding the difficulties and the challenges.

Jerry Hoepner:

Excellent summary. Well, Ian, it's been fantastic having this conversation. Great to have it again, I don't remember exactly how many years ago we talked. But it's great to have that follow up conversation. And I know our listeners will really enjoy this conversation. So, thank you for being here today.

Ian Kneebone:

I'm more than happy to help out and thanks for all the speech language therapists who have contributed to my work. I wouldn't be here without them. And it's great to see this interprofessional learning moving forward. If I hadn't missed out any of the great people I've worked with, I do apologize. But there's just too many of you now, which is part of the success story.

Jerry Hoepner:

Yeah, that's a good problem to have. Well, thank you again. Goodbye.

Ian Kneebone:

Thanks, Jerry.

Jerry Hoepner:

On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.

Resources:

1. El-Helou, R., Ryan, B., & Kneebone, I. (2023). Development of the "Kalmer" relaxation intervention: co-design with stroke survivors with aphasia. Disability and rehabilitation, 45(9), 1517-1529.
2. Kneebone, I. I. (2016). Stepped psychological care after stroke. Disability and rehabilitation, 38(18), 1836-1843.
3. Morris, R., Eccles, A., Ryan, B., & Kneebone, I. I. (2017). Prevalence of anxiety in people with aphasia after stroke. Aphasiology, 31(12), 1410-1415.
4. Ryan, B., Bohan, J., & Kneebone, I. (2019). Help‐seeking and people with aphasia who have mood problems after stroke: perspectives of speech–language pathologists. International Journal of Language & Communication Disorders, 54(5), 779-793.
5. Ryan, B., Kneebone, I., Rose, M. L., Togher, L., Power, E., Hoffmann, T., ... & Worrall, L. (2023). Preventing depression in aphasia: A cluster randomized control trial of the Aphasia Action Success Knowledge (ASK) program. International Journal of Stroke, 18(8), 996-1004.
6. Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. (2019). Counselling training for speech–language therapists working with people affected by post‐stroke aphasia: a systematic review. International journal of language & communication disorders, 54(3), 321-346.
7. Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. L. (2022). Counselling education for speech-language pathology students in Australia: A survey of education in post-stroke aphasia. Aphasiology, 36(12), 1417-1446.
8. Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. L. (2023). A phase II randomised controlled trial evaluating the feasibility and preliminary efficacy of an education program on speech-language pathologist'self-efficacy, and self-rated competency for counselling to support psychological wellbeing in people with post-stroke aphasia. Topics in stroke rehabilitation, 30(8), 842-864.

Interviewer info

Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.

In this episode, Lyssa Rome interviews Teresa Gray about creating equitable services for people with aphasia who are bilingual, non-English speaking, and historically marginalized groups.

Guest info

Dr. Teresa Gray is an Associate Professor in the Department of Speech, Language, and Hearing Sciences at San Francisco State University, where she directors the Gray Matter Lab. Teresa's research aims to improve aphasia health care outcomes for historically marginalized populations. Her research interests include bilingual aphasia, the mechanisms of language control in aphasia, and the role of language rehabilitation and its short-term and long-term effects on functional communication. Her team is working to develop evidence-based treatment methods for non-English speaking persons with aphasia, as well as bilingual persons with aphasia. In addition, the Gray Matter Lab hosts identity-based conversation clubs. The goal of these groups is to increase quality of life for the participants, and the lab is starting to examine why these groups are so meaningful to the participants.

Listener Take-aways

In today's episode you will:

• Understand why careful listening is important when working with bilingual and non-English-speaking people with aphasia and their families.
• Describe how speech-language pathologists can tailor their treatment to meet the needs of bilingual people with aphasia.
• Learn about identity-based aphasia groups.

Edited transcript

Lyssa Rome

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication conditions in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group.

Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Teresa Gray, who was selected as a 2023 Tavistock trust for aphasia Distinguished Scholar, USA and Canada. In this episode, we'll be discussing Dr. Gray's research on aphasia treatment for bilingual and non-English speakers with aphasia, as well as identity-based aphasia conversation groups.

Dr. Teresa Gray is an associate professor in the Department of Speech, Language, and Hearing Sciences at San Francisco State University, where she directs the Gray Matter Lab. Teresa's research aims to improve aphasia health care outcomes for historically marginalized populations. Her research interests include bilingual aphasia, the mechanisms of language control and aphasia, and the role of language rehabilitation and its short-term and long-term effects on functional communication. Her team is working to develop evidence-based treatment methods for non-English-speaking persons with aphasia, as well as bilingual persons with aphasia. In addition, the Gray Matter lab hosts identity-based conversation clubs. The goal of these groups is to increase quality of life for the participants. The lab is starting to examine why these groups are so meaningful to the participants. Theresa Gray, welcome to the Aphasia Access Conversations Podcast. I'm really glad to be talking with you.

Teresa Gray

Thanks so much, Lyssa. It's great to be here today.

Lyssa Rome

So I wanted to start by asking you what led you to study bilingualism and aphasia?

Teresa Gray

Sure, that's a great question. So, you know, really it was about curiosity. And so when, when I finished my master's in speech language pathology, I was working in Los Angeles at Rancho Los Amigos National Rehabilitation Center. And I was working alongside a phenomenal group of speech language pathologists and a rehabilitation team, and it was just a wonderful experience. And a lot of our patients were bilingual. Some people were monolingual, non-English speakers. And it was just a situation where I was learning more and more about how to treat this population that may not speak English, even though a lot of our aphasia materials are based on English speakers. And in addition to that, I was curious to know more how does language present after stroke? If someone is a simultaneous bilingual versus a sequential bilingual, does that affect life after stroke? What about proficiency? What about language dominance? What about age of acquisition, all of these issues that go into language presentation—I was very curious about, and there wasn't a lot of research out there. And so, of course, as SLPs, we read the literature, and we really want to know, what is best practice.

So when I decided to go back for my PhD, I decided I wanted to go study with Swathi Kiran, who is a leader in the field working with bilingual adults with aphasia. And so I had that opportunity. And I moved from Los Angeles to Boston to go study with Swathi. That's when I really dove into learning more about cognitive control and what that looks like as far as like language control, and how that interacts with cognitive control and how that's represented in the brain, and what that means for our patients.

Lyssa Rome

And since then, I know you've moved into treatment. Can you say a little bit more about that?

Teresa Gray

Yeah, absolutely. So after it, yeah. So after Boston, I accepted a faculty position at San Francisco State University. And I continued with the cognitive control work. But that's when I realized, yeah, that's fascinating work. Because it's really better. It's getting to know it's learning more about the brain. And I think that's so important. It's so fascinating.

But I think what's also important with our patients is how does the rubber hit the road? How are these people, our patients and their families and caregivers, and the stakeholders, how are they affected by the aphasia? And what does that look like? And so that's when I started, I expanded my research agenda and the program, and I teamed up with Chaleece Sandberg. She was already working on ABSANT, which is abstract semantic associative network training. And that's a treatment that if you train concrete words, they get better. But if you train abstract words, they get better, they improve, but we also see generalization to the untrained concrete words.

So when she and I started talking about it, and you know, I bring the bilingual piece. And so we really wanted to develop a bilingual version of ABSANT. And the idea here is that when you treat the dominant language, it improves. But if you treat the non-dominant language, it improves, but you also see cross-language generalization to the untrained dominant language. And as we progressed through these this work, we really we started to realize that it's not just spreading activation that supports the cross-language generalization. There's this level of cognitive control.

So to achieve the cross language generalization, we're seeing that not only do you treat the non-dominant language, but patients also need to have intact cognitive control mechanisms at play. So the direction we're moving in is that if we have patients that come to the lab for bilingual ABSANT, we also make sure that we administer some of the nonverbal cognitive control tasks to get a sense of how they're processing that information, because that informs how we interpret the ABSANT performance.

Lyssa Rome

It sounds like really interesting and important work. And we we've interviewed Chaleece Sandberg on this podcast. I'll put that link in the show notes. Can you can you say more about bilingual ABSANT and what you've learned?

Teresa Gray

Yeah, sure. So what we've learned, like one aspect that we've come across is that just like, one size doesn't fit all is the same with therapy. And it wasn't before too long that we realized that this bilingual therapy isn't a great fit for all patients. And I'll tell you what I mean, like most bilingual therapies, we're treating patients within monolingual contexts. So you'll treat English and then you treat Spanish.

In my lab, one of our goals is we're really trying to be as inclusive as we can. And if a patient comes to us and speaks a language combination, let's say Russian and English, we think about do we have resources? I mean, do I have students available to administer the intervention? Can we norm the stimuli and I've been fortunate enough to have many bilingual students who speak a variety of language combinations. And being in California, most of my students speak English and Spanish, but I've also had Polish-English combinations Chinese-English, Russian-English and a few others.

What I'm getting to is that a few years back we had a Tagalog-English English speaking patient, and a very motivated student who wanted to administer bilingual ABSANT. And what we found was that during the English phase, it went as usual but during the Tagalog phase, both patient and clinician reported that it was just, you know, quite frankly, it was weird not to code switch, and it felt constrained and unnatural. And so really the logical next step was to think about, well, really to question, why are we delivering a bilingual therapy in a monolingual context, we shouldn't be doing something where it's more of a code switching based therapy that really fosters the communication that the patient needs.

So this was a few years ago, and at the time, we didn't have the bandwidth or resources to address this. And unfortunately, that's how research functions—it's really about capacity and resources. But now here we are, and last summer in 2023, we did start norming our Tagalog data set, and to really move forward with this, a truly code switching, or as some folks are calling it translanguaging, like this new, another phase. So we can actually look at what is most beneficial for these patients who are code switching in their natural environments. And so thus far, we have run one patient who has who has gone through this translanguaging experience. And we're quite fortunate to have two more patients on deck. And so we're pretty excited about this.

Lyssa Rome

Yeah, that's really exciting. And I think on this podcast, we talk a lot about life participation, the life participation approach is about making therapy as real to life as possible, and I think what you're describing is targeting therapy to the way that people actually use language. Whether you call it code switching, or translanguaging, the way we deliver therapy to people who are bilingual or multilingual should mirror in some way, their experience of speaking more than one language. Am I getting that right?

Teresa Gray

Yeah, absolutely. And I think it also touches on you know, I think it's important that we listen to our patients, other clinicians, family members, and if you're working with students, listen to your students. For quite some time, my students have been asking about non-English interventions for aphasia. And we all know that the majority of aphasia interventions are based on English speakers. But the thing is, if we're simply adapting English aphasia interventions for non-English languages, does that create treatment resources that are culturally and linguistically appropriate?

Now, regarding the cultural piece, oftentimes you can choose stimuli to be culturally appropriate. But what about the linguistic aspects when you take a treatment and simply adapt it to another language? And I think it's important that we stop and think about this issue. And I'm in a situation where my students are thinking about social justice issues within the field of speech pathology, and we're thinking about patient access to services, and what those services are, and are they equitable across diverse linguistic populations?

Lyssa Rome

It seems like you're talking about really listening to and understanding and asking the right questions of all of the stakeholders—the students, the clinicians, and, of course, the people with aphasia. And, as we were preparing for this podcast, you talked with me a little bit, and I was really interested in what you had to say about, the importance of understanding client's language history and how they use language. And you had some ideas for how to elicit more information about that. Would you mind sharing that for a moment?

Teresa Gray

Well, one thing I've learned to ask, and I learned this from Maria Muñoz, who's down in Los Angeles. One thing I think it's really important is how we ask questions to our patients and their families. And so rather than asking someone if they're bilingual, which can be a loaded question, and people interpret it in different ways, because some folks think, well, to be bilingual, you need to be highly proficient in both languages. But really, that's not the case, right? Like, we want to know if people have exposure or if they use a language other than English. And so rather than asking you, if someone's bilingual, you can say, "Do you speak another language other than English?" Or "Do you understand another language?" And then people really start to open up.

Another important way to ask questions is, you know, who are you directing your question to? Are you asking the person with aphasia about their needs and what they want to do, versus the families? Sometimes families will say, "Our 24/7, caregiver is speaking Tagalog." Let's say you're Spanish, so they really need to speak Spanish, but maybe the patient wants to get back to their, you know, a club or something, you know, some social group that they're a part of, and they want to practice a different language.

So again, you know, the language history, the way we ask questions, I think it's quite important when we're gathering information so that we can develop, you know, these rehabilitation programs for patients.

One way that we're addressing equitable services in my lab is that we've thought with my students and I we've thought about going back to the original ABSANT. So original ABSANT was developed for English monolinguals. And we decided to push ahead with a Spanish monolingual version. And this is quite important in the United States. This population, Spanish speakers, are growing, especially in certain areas, of course, in California. We really wanted to see we're assuming that ABSANT can be adapted to various languages. And theoretically, it should make sense. But I think it's important that we have the data that shows it. And so we've in this past year, we've started collecting data to actually show that yes, it is effective, because I think as conscientious clinicians, and in our profession, we talk about best practice. It's important that we show it. And so, moving forward, this is what we're doing and we're quite thrilled that we have the resources and the opportunity to move forward with this type of a project.

Lyssa Rome

It sounds like you're describing how equitable services starts with research that's more inclusive and is itself more equitable.

Teresa Gray

Absolutely. And I think it also it reminds me of how do we capture improvement? How do you measure success? Because right now, when we're doing research, or right now, when we're doing research, and also clinicians out there in the field, we talk about data collection, right? How are you measuring improvement? And for us in the lab, we're looking at effect sizes, but sometimes these effects sizes aren't significant. However, the patient reports that they feel more comfortable, and they're more confident at family gatherings, or out in the community, and that maybe they won't ask for help at the grocery store, but if they need to, they're not scared. And I think that is so I mean, that's invaluable. But how do you measure that? And how do we incorporate that into our data collection? And how we report improvement to the funding sources? Right? Because all of us I, you know, you can't get very far when without talking about insurance dollars and how we measure improvement to get more services for our patients.

Lyssa Rome

I think that that's, that's absolutely true. And I think we have to measure what's important to the person that we're that we're working with. I, I also wanted to talk with you about the identity-based conversation clubs that you have been working on at San Francisco State. Can you say a little bit more about those?

Dr. Teresa Gray

Yeah, sure. So we do have a few different groups, conversation groups, through my lab. And one group, it started out as just a service to the community. And so we started an English-speaking group. And at first a few years back, we were in person, but we transitioned to Zoom once COVID hit, I was very impressed with my team, because here in California, when things shut down in mid-March, within three weeks, the group was online.

Around that time, maybe a few years ago, we started talking about a Spanish-speaking group, we do have many bilingual patients who are Spanish-English bilinguals, a few of these folks are more comfortable speaking in English. That's their emotional language, and it's their human right to use that language to communicate. So my lab put together a team to start hosting a Spanish-speaking group. And what we've seen is that there's just a different dynamic, when you're speaking in the language that you're most comfortable using. Jokes are different. Chit-chat is different. And we found that patients report a great appreciation for the Spanish-speaking group. In addition to the Spanish conversation group, we also have a Black conversation group that's facilitated by Black student clinicians. This group was started back in January of 2022.

Lyssa Rome

And we spoke with some of the members of that group on this podcast and I'll again, I'll put the link to that in our show notes. And they were the people who participate in that group. Some of the members of that group had a lot of really positive things to say about how meaningful is had been to them to be amongst other Black people who share their experience. So maybe you can say a little bit more about that group?

Teresa Gray

Yes. So this group, it was started based on public interest. So one day in 2021, I received a phone call from a woman whose father had suffered a stroke. And she said to me, my dad is Black. He frequently attends aphasia groups. But the majority of people are white, where's the diversity? She was essentially asking, Where's the diversity? We know Black people are having strokes. But where are they? And what resources are there for people of color who have strokes? And of course these are important points that she's raising. And, in fact, leading up to this woman's call, my students and I were, we had been talking about starting this type of a group, but I wasn't sure if there was interest.

But that being said, we know when we look at health disparities, and we look at the data, we know that Black people have as much as a fourfold higher incidence of stroke than their white counterparts. But Black people are less likely to receive rehabilitation services. And that's just not right.

I have, you know, in this group, like you were saying, lists of people are so appreciative, and they're so interested, and they just really value this group. And I've had some of these patients who have said to me, Look, it was the summer of Black Lives Matter, people were getting murdered in the streets, people were rioting, and there was this national discourse going on about it. And they wanted to talk about it. But their aphasia conversation groups, were talking about the weather, or sports or the things that just seemed inconsequential at that time in their lives.

And I think this just gets back to the importance when we think about identity groups—what they are for these people with aphasia, and how do we facilitate and coordinate them? And especially, you know, when the majority of SLPs are white and monolingual? How do we step into this arena? And how do we support and how do we, how do we move forward with these, you know, with these groups that are so valuable and meaningful for people with aphasia? Yeah.

Lyssa Rome

I mean, I think it's incredibly important work. What have you learned about some of the best practices?

Teresa Gray

Sure, yeah. So I think it's all about, you know, being open and listening, but also learning how are you an ally? How do you ask questions? How do you make yourself vulnerable? Because if you're not sure about something, you want to ask. And, you know, sometimes with these groups, we've all left groups or situations where we reflect upon like, "Oh, I said, I said something—was that appropriate? I don't know." But again, it's making ourselves vulnerable, and asking you to going back to the group next week and say, "Hey, I heard this, or I said, this, was that appropriate?" I think it's just being comfortable with this kind of discourse. To get there, it just takes practice, which just is, you know, going through the motions and doing the work and going through it and experiencing it.

Lyssa Rome

It seems like that's something that you've really prioritized within your lab and with your students and in your work.

Teresa Gray

Yeah, and you know, and we make a point to talk about it, we talk about what it looks like, how it feels, and sometimes those are hard conversations to have. There's literature out there. There's different resources to lean on. But it's definitely I mean, we're all learning as we going as well as we're going and I think it's about having just being reflective, which which can be challenging. But I think that I think as we come through to the other side, we're growing and it's this bi-directional growth, whether it's me and my students, us and the patients, the caregivers, just having these honest conversations because I think our goals are the same, right? Our priorities are to improve quality of life. And and that's essentially what we're doing.

Lyssa Rome

Coming back to bilingualism, I'm wondering if you have any additional thoughts or advice about use of interpreters, or thoughts for bilingual clinicians? How can they best work with and support people with aphasia? Who are also bilingual? Or who are non-English speaking?

Teresa Gray

That's a great question Lyssa, because many of us, many of SLPs are not bilingual. And quite frankly, even if you are bilingual, you may not speak the language of that population where you are working.

So it's so important that we partner with our interpreters. And know knowing who they are at your site. And this is tricky, because when we talk about this, one recipe isn't for everyone, because all sites are different. The way interpreters are set up in one hospital differs from the next hospital. So you need to know your system and then figure it out. Because if you want to start a conversation group, and you don't speak that language, you're gonna have to team up with the interpreter. And, and I think my advice now is, you know, it's not just about asking the interpreter about that culture or language, it's about doing your homework.

So for instance, if you have Spanish-speaking groups, it's important to know what countries your patients come from. And this is valuable because holidays vary across countries, and even within countries holidays and traditions will vary. So you know, when these and these variations can feed into your group discussions. So for instance, around the holidays, people can share what they do with their families, what foods do they eat, how do they celebrate? Last year, we had a Spanish-speaking group, and it was around the Fourth of July. And so rather than talking about the US Independence Day, each participant shared what their country's independence day looked like, and growing up what their traditions were. And people really enjoyed that type of activities.

As clinicians, learning about cultures, is so important. I know SLPs, you know, your time is so valuable, right? Like, our caseloads are high, but we can learn bits of information, talk to interpreters, explore topics, and then have activities. And if we go into it with open, you know, just creating a safe space where we're all learning, I think it creates this environment where people feel welcome, and they're comfortable. It's a positive environment when you have an SLP, who may not speak the language, but you have an interpreter who does. And then the participants, of course, they speak that language as well.

Lyssa Rome

It reminds me of what you were saying earlier about the importance of careful listening to the people that we're working with, including interpreters, right, but also particularly the people with aphasia, who we're serving. Are there any other best practices that you want to share for SLPs who are working with historically marginalized populations of people with aphasia?

Teresa Gray

Well, I think at the end of the day, it's important that when we go into these environments, thinking about what materials are we using? How are people responding? And creating a space that if we have open eyes, we're open to suggestions. It creates an environment where people are comfortable to share, and, and then even when people give feedback, we can also improve our practice.

Lyssa Rome

I think that that's at the heart of what we aim to do as, as people who believe in the life participation approach. So thank you for that. I'm wondering as you look ahead, what's on the horizon for you in terms of your research in terms of your work in your lab? Can you tell us a little bit about, about what you're working on now, or what you're looking forward to working on?

Teresa Gray

Well, one thing on the horizon that we're quite excited about is with our Black conversation club, it has had such a great reception, and the participants are so thrilled to be there, that we really want to dive deeper, and take a look at what makes this group so special. And so we're ramping up now, hopefully we'll be starting soon. I'm partnering with Jamie Azios, who's in Louisiana, and her expertise is in conversation analysis. And so we're teaming up to start looking at the Black conversation club, to look at the discourse and try to figure out well, what are the themes? What is the secret sauce? What is the special sauce that makes this group so powerful?

Because I think, you know, when when we have the when you know, when you have data that shows that, and we can write about it and share it with our colleagues, I'm hoping this will inspire and give more of a foundation platform for our colleagues to start groups like this. Because if you have a research paper out there, it's something to hold on to. And it's something to really say like, look, this is effective. And it's worth it's, you know, it's so meaningful and valuable that we should be starting groups like this and other places as well.

Lyssa Rome

Absolutely. I agree. And I really look forward to that research. I think it's so important. So thank you for doing that work. Dr. Teresa Gray Thank you so much for your work, and for coming on the podcast to talk to us about it. I really appreciate it. It's been great talking with you.

Teresa Gray

Great, thanks so much.

Lyssa Rome

And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected] Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.

Links

Gray Matter Lab at San Francisco State University

Jamie Azios — Aphasia Access Conversations Podcast episode (Second episode)

NAA Black Americans with Aphasia Conversation Group — Aphasia Access Conversations Podcast episode

Chaleece Sandberg — Aphasia Access Conversations Podcast episode

Article: Beveridge, M. E., & Bak, T. H. (2011). The languages of aphasia research: Bias and diversity. Aphasiology, 25(12), 1451-1468.

Article: Gray, T., Palevich, J., & Sandberg, C. (2023). Bilingual Abstract Semantic Associative Network Training (BAbSANT): A Russian–English case study. Bilingualism: Language and Cognition, 1-17.

Open access: https://www.cambridge.org/core/journals/bilingualism-language-and-cognition/article/bilingual-abstract-semantic-associative-network-training-babsant-a-russianenglish-case-study/9B7FD1EDBDAB6FD042CD4714E1548005

Article: Sandberg, C. W., Zacharewicz, M., & Gray, T. (2021). Bilingual Abstract Semantic Associative Network Training (BAbSANT): A Polish-English case study. Journal of Communication Disorders, 93, 106143.

Article: Gray, T., Doyle, K., & Rowell, A. (2022). Creating a Safe Space for Black Adults With Aphasia. Leader Live.

Open Access: https://leader.pubs.asha.org/do/10.1044/2022-0614-black-aphasia-group/full/

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 helped us come up with a plan that we could manage in a way that would help us sustain his quality of life as best as possible.

So I really saw, personally, I mean, I saw day in and day out how his dysphagia from his head neck cancer really impacted, hugely impacted, his participation with our family, and his quality of life. I am grateful for this work that you're doing and the passion you feel for looking at the whole person as you assess and treat dysphagia. And thanks to you, I've been reading, since dysphagia is not usually in my wheelhouse as much these days, but thanks to preparing for this particular episode, I was able to read some articles by Rebecca Smith and her colleagues that showed me that there's some amazing work being done looking at this whole topic, so thank you for that. Okay, and taking a deep breath, because that's a story I've been thinking about for quite a bit.

Back into our next question. What is the speech pathologist's role in assessing and addressing health related quality of life and the associated mealtime quality of life? That seems to be talked about a lot in the literature right now. Jocelen, is that you again?

Jocelen Hamilton 21:57

I'm glad you mentioned Rebecca Smith's work. There are actually three papers, I think, that that group, she and colleagues, put out in 2022. And specifically, I'll share a few quotes from their paper The True Cost of Dysphagia and Quality of Life: The Views of Adults with Swallowing Disability, but in a way, there's a call to action, and she's not the first to mention it. But for us to include social participation, and their overall well-being, as part of our dysphagia intervention. To make that routine, and then to also ask questions: How are you doing? How are the holidays? How are these social settings with eating? I like to ask patients and their family members, and ask them separately, not meaning like individually, within the same session: Are you participating in doing this, the same things that you did before your diagnosis? Or how is that looking? Are you going out to eat as much? What do you miss now that is different and you're experiencing changes in your swallowing.

And it's interesting, because sometimes the partner will say that they miss going out to eat, and they need to navigate feelings like, "Well, I don't feel comfortable eating this in front of my loved one who has difficulty swallowing. I feel conflicted about I get to eat ribs, and they don't." Those kinds of things. The importance of eliciting these stories, so we can really see what are their challenges, because then we can, like LPAA teaches us, we can engage in this creative problem solving and how we can help navigate through some of these challenges. I think those are a couple of important things that we can look at to support people.

Ellen Bernstein-Ellis 23:45

Thank you. And I just wanted to let our listeners know that we're putting all these references into our show notes. I took some from your ASHA presentations that I attended. So those will all be cited in the show notes.

Well, to expand to the participation, environment, and personal domains, you started to think about using patient reported outcomes or PROs for assessment. Why don't we go through the domains and discuss potential tools and interventions to fill out this framework a little bit more. So what might it look like if you consider participation?

Jocelen Hamilton 24:24

When we're looking at participation, we're looking at these meaningful activities may or may not involve oral intake, but looking at their current levels of participation compared to their pre cancer status. So how often, and in what ways, is someone with swallowing challenges participating? I kind of already talked about that a little bit. And how are the family members doing?

Here's one of the interesting things that I've had patients share here. Sometimes, one of the swallowing strategies that a patient needs to complete is a purposeful throat clear, and a re-swallow, or some patients do naturally their throat clearing, or maybe they're coughing when they're eating and drinking. This is an area where it calls attention to them when they're doing this. And then during the pandemic, we were all super hyper aware is somebody clearing their throat? Is somebody coughing? I've had some patients where they really don't feel comfortable because it calls attention. And people ask, how are they doing?

And also, another challenge being that when swallowing is hard, talking and swallowing is extra hard. When swallowing is challenging, most people need to just do that, where we take for granted that meals are a very social time. So some of those issues can be really challenging. There's also some individuals where their difficulty with swallowing has to do with loss of the bolus coming out and so there's almost changes in appearance, where they may not feel it. Their lip, their chin might be numb, and they don't know that liquids are dripping out, or they have a piece of food sitting there. So, they might be hesitant to go out and participate in different social settings. Even sometimes we have patients where they don't feel comfortable eating with their own family members, where they will eat completely separate from their spouse.

Ellen Bernstein-Ellis 26:28

I am just really struck again about the overlap of some of the things in your head neck cancer patients with clients I see with aphasia. It's really striking. So should we take a moment and discuss how this might look if you consider the environment?

Jocelen Hamilton 26:44

I really didn't address a PRO at all.

Ellen Bernstein-Ellis 26:46

Oh, it's not too late. We can still do that.

Ellen Bernstein-Ellis 26:52

Why don't you go ahead?

Jocelen Hamilton 26:55

Sure. Okay. So we're looking in this interview, right, like gathering information, learning how these things are challenging for them. For patient reported outcomes, PROs, Theresa, and I both looked into different ones. And oh, this one has these questions. And this would fall within this domain. So I'll touch base on a few of them here. And then some of them, they have questions that actually apply to all of the domains.

So for these, there's one the Swal-QOL, this is probably the most broad in terms of looking at all of the domains that are within this Swal-FROM. It has 10 different quality of life concepts that it has specific questions for. So for this one, there's one subset that's all about social functioning. Some of the questions, they're rating from either strongly agree five point scale to strongly disagree, One of the questions, for example, is "I do not go out to eat because of my swallowing problem." That really tells you where they're at with that participation, or "Social gatherings like holidays or get togethers are not enjoyable because of my swallowing problem." So that really hones in on that challenge.

Within our specific area of practice with individuals with head neck cancer, there's a scale called the Performance Status Scale Head Neck Cancer, PSS-HN. Now you might think, how might I use this? I encourage people to be open minded, even though this wasn't validated. And some of these are not validated on individuals who have dysphagia from a different cause other than head neck cancer. It doesn't mean that you can't use it as a way to gather information, engage, and perhaps re administer.

I'm also a big fan of, as people fill this out, having a conversation about their responses as they go to gather information. But with this, the Performance Status Scale, there's a specific rating scale about public eating. So zero means always eats alone. And 100 is no restriction of eating for any place food or company. So they would eat out at any opportunity. Where in-between might be one point on the scale, "eats only in the presence of selected persons and selected places", or they would eat out but there would be another option, "eat out, but be more selective about the diet textures and things they would consume in a social setting", which is common. Some individuals will specifically choose different foods when they're when they're in a social setting.

There's also another PRO, the Dysphagia Handicap Index. So with this one, it's a 25 item questionnaire and it does specifically look at physical, functional and emotional aspects of dysphagia. And so a couple of questions from there that would fit with the participation domain include, "I'm embarrassed to eat in public" and "I don't socialize this much due to my swallowing problem". Those could give some insight into these areas by selecting some of those questions.

Ellen Bernstein-Ellis 30:08

Well, I'm really glad you caught me. I think I was so struck about the overlap that, thank you for coming back and talking about those PRO's. Are we good? Can we transition to the environment next? What would this look like? What does the Swal-QOL look like if you consider the environment.

Theresa Yao 30:29

When you talk about the environment, it can be factors such as the availability of the appropriate food textures, and oral liquid consistencies across different social settings. For example, if you go out to the restaurant, are there any easier food texture that's available for people with dysphagia? And that's one of the environmental factors.

And then there's a new article from ASHA leader that just came out about dining with dysphagia. So that's actually a pilot program from University of Cincinnati that try to help restaurants to expand their menu options so that they have more choices for people with swallowing disorders.

Ellen Bernstein-Ellis

That's amazing.

Theresa Yao

Also, another factor that related to the environment is the attitude and level of acceptance or support the people with dysphagia can get from their family, their friends, or even just strangers in their eating situation. So just like Jocelen mentioned, if you're coughing or clearing the throat, what the reaction from other people will be like, -- if they're supportive, or if they're not so. Sometimes these factors can make a patient uncomfortable eating out because of those environmental factors. And then also, the attitude from people around usually can be impacted by culture. Which type of textures they prefer to consume, and how they consume. If you go to a different type of restaurant, they may have different types of food textures, that are specifically for that culture, so that's also another factor.

And then also, on the broader spectrum, is the attitude from the healthcare professionals or the public, because the attitude from healthcare professionals is basically, because dysphagia is invisible, and when you are in the hospital, not everyone can see it. If you have leg injury or arm injury, people can see it. But if you have dysphagia, you can't see it. And then when the health care provider is, prescribing your pills, and if you can't swallow, how can they take the pill? They probably are not aware of this, this type of disability, so they may not prescribe you the right pills.

These are the things that we can consider as environmental factors. And of course, even larger scale, there's health care policies, the service systems, that may impact the people with a dysphagia too, because insurance may not pay all the dysphagia services, or how often can people get dysphagia support or service? So those are all the environmental factors that we may consider.

Ellen Bernstein-Ellis 33:21

I think the importance of this framework is helping us as clinicians to continue to think just broader and more widely about what's impacting the person in front of us. I mean, wow, you are giving us a lot of factors, from the very personal to the broader social policy. And I want us to take a moment and also talk about personal factors, that whole domain.

Theresa Yao 33:41

Personal factors can also be very, very important. And a lot of things can be involved. So we know that the person was dysphagia may not be the same person, have the same hobbies or same traits, as before their treatment. So that may cause anxiety, or they may feel embarrassed because of their eating habits, or the change of their eating habits. Because we know that eating and drinking is very individualized. Some people, if they're born as a slow eater, they probably are okay with their dysphagia diet or if we ask them to eat slowly and take smaller bites, that's totally fine. But if some people are born as a fast eater, they will have a huge challenge with, if you give them the strategy to eat slow, taking small bites, because that's just not them anymore. They just feel like they're a different person and then they feel disappointed or frustrated if they can't eat as fast as they used to.

And I always share this in my clinic. I see two patients with similar procedures. One person can feel really happy with their diet. They feel okay because they're always eating soft foods or soups. And then another person just with a little bit of impairment of mouth opening, they feel like it's just really frustrating because they can't bite their sandwiches and burgers. And that just makes a huge difference. But if you're only looking at their swallow study, it's the same, they probably don't have any major impairment, but the impact on the quality of life on their participation, environment, and also personal factor. It's so different. So that's why I think considering a personal factor is really important.

Ellen Bernstein-Ellis 35:38

So you're giving us examples of the things we should be thinking about, you're giving us examples of some of the PROs that might help us measure. But if many of the EMRs, the electronic medical records are set up for impairment focused measures, how can you adapt the documentation to include these other domains? That's always a barrier, or can be maybe, not always, can be.

Jocelen Hamilton 36:00

I think sometimes it can be a barrier. If sometimes the entry is just you have to click certain things, there's not a lot of room for free text. With the EMR that we have, we can have a set template, but we can copy and paste anything in there. So what I did is I took the A-FROM--actually, in the same paper that put out the A-FROM, they put the FROM, Framework for Outcome Measurement, and actually suggest that you could use it for individuals with TBI and called it TBI-FROM.

I took that and put it into a template and have the citation for it there and then added a title. It gives a visual for other individuals reading the note of what I'm talking about. 'Survivorship beyond body function domain: Dysphagia's impact on personal, participation, environmental domains', so I have that as a title. I have it as this set, we use epic, so I can do dot phrases (Smart Phrases). I can drop that into a note. And then as I go through and document, I have the subtitles of body function, participation, environment, personal factors in as I'm collecting this information. That's how I can organize my note.

I don't do it every single time with every single patient. Sometimes some of our sessions are more impairment focused, like we need to for safety reasons focus on this. Sometimes it's more a whole session all about how are they doing with their personal domain? I had a patient in the clinic today, and he is depressed, and we just had this quick talk of, "Okay, what do we need to do? Can you talk to your primary care doctor? This is common, many individuals with head neck cancer have depression." But I'll organize my note, getting back to the notes, with those subtitles and putting the information in there. It also is a cue for me, because I keep needing cues and reminders to come back and broaden that focus, instead of always being in on the impairment and you monitor, document, and then monitor, as I'm reviewing back on their notes to see how they're doing across these different domains.

Ellen Bernstein-Ellis 38:19

That is a beautiful example of how you can adapt something. I'm sure a lot of our listeners really appreciate you describing it so carefully, and hopefully will inspire some of them to see what they can do to adapt their EMRs.

A little bit earlier, you mentioned the importance of getting perspective from both the client and the care partner. How does the caregiver or care partner experience fit into the Swal-FROM?

Theresa Yao 38:47

Caregiver or care partners, they play a really important role in this whole journey with individuals with dysphagia. And I'm sure Ellen, you probably were in that role before. Most of the time, it's the caregiver making the meals for the spouse. Making the meals for the patients with dysphagia can be very challenging. Because just the texture, you have to take care, and the taste. I have caregivers talking to me. They told me that they tried their best to make all the foods but the patient didn't eat at all or didn't like it at all. Then they feel super frustrated. These are all the challenges that the caregivers may face.

Dr. Samantha Shune and colleagues, they did a lot of work on this caregiver burden topic. Their study said increased caregiver burden has been associated with the degree of impact that dysphagia is having on mealtime logistics. Family members also report increased anxiety and fear and frustration, stress, embarrassment and social isolation. So these are very two critical things to consider when we're thinking about whole person care, because we can't just care for one person, the patient. But if the caregiver is also experiencing all the stress, all the anxieties, we also need to consider that factor.

Researchers in Australia, Professor Nund and colleagues, they also pointed out that this specific caregiver burden is third party disability. And it's the consequence of that person's impairment, which impacts the functioning and ability of their family members or significant others. That's why we want us to fit this caregiver experience into this Swal-FROM framework. Just adding the family caregiver in all the different domains to support patients with dysphagia. And caregiver can influence four domains. But at the same time, also, we need to take care of, examine, the four domains of the family member or the caregiver--going to check their participation, their environment, and their personal factors. Those are really important, because their health and well-being can be affected by being in the journey of taking care of people with dysphagia. So they're super tied closely. That's why we wanted to fit this framework as well.

Ellen Bernstein-Ellis 41:21

One of the clinical tools I've learned is available is a PRO measure called the CARES, developed by Shune and colleagues, and we'll again put the citation in our show notes. Theresa, could you describe that a little bit more?.

Theresa Yao 41:37

So this is a wonderful screening tool that developed by Dr. Shune and colleagues. It's full name is called Caregiver Analysis of Reported Experiences with Swallowing Disorders. It has 26 items in the questionnaire. And then there's two parts that explore a different aspect of dysphagia's impact on the caregiver. One is a checklist on the behavior and functional changes, and one is a checklist of the subjective caregiver stress. Basically, it's a simple yes/no questionnaire. You can give it to the caregiver and they can just circle yes or no. Then from that, you can figure out what area you may address as an SLP. Or you may want to refer them to a specific team or professionals to address that, because we have limited scope of practice, we can't do everything. But if we can help them to identify the issue and then point them in the right direction, to the right team. That may help a lot.

Ellen Bernstein-Ellis 42:43

In your ASHA presentation you also mentioned the Rome Foundation is a resource and another website that offers skill building around managing serious illness conversations. We're going to put both of those resources into the show notes for people, but we don't have time right now to go into them fully.

But Jocelen, can you address or share what benefits you've seen by adopting this framework? Does it help with goal setting? Does it help with acceptability of recommendations? What have you seen?

Jocelen Hamilton 43:12

I think it's helped me and I feel like it's helped patients and our families have a little more clarity about, okay, these are the areas that are challenging. And again, I'm a visual person, so if I write it out with them, and they're telling me things, and I'm explaining, I get excited about the diagram, and I'm like, you know, see, this seems like an area of challenge. Is there something that you're interested in doing in this area? Are you willing to talk with another person who's gone through this?

So I feel like it really can give clarity, I think, for myself, what you know that A-FROM does, and Swal-FROM now is to not, I professionally can get really hung up on the impairment. And I can't always change that, right? We can't always change it to the degree that we would like. Of course, we would like everybody to have complete resolution, right? And so there can be this frustration and powerlessness with that. And obviously the patients and our family members can be experiencing that also.

And with this broader view, we can say but here's what we can focus on what can we do to have you participate that would make you feel better? What can we do that would help you with your personal feelings? So I feel like it addresses things that matter and we can have more conversations about how is their day to day life being impacted? What are some small steps we can take in a direction that might help them and their families.

Ellen Bernstein-Ellis 44:43

That's beautiful. Thank you so much, Theresa and Jocelen. It has been a pleasure and I've learned so much from both of you, listening to you apply this framework and look deeply and carefully at quality of life for people with dysphagia. I really appreciate it. Is there anything else you want to add?

Theresa Yao 45:03

I just wanted to add a little bit. So I think it's really important as clinicians to listen to our patients and caregivers, because we need to learn from their experiences, their perspective. And, like we mentioned dysphagia is invisible. I wanted to share one of the quotes from one of the dysphagia support members. He says, "dysphagia is a label you carry with you inside." And that's really just so true, because it's hidden. If you go outside, people see like you what you can walk, you can talk, but they don't know that this disability is hidden inside. And I think it's so important to address not just the impairment, but also listen to the patient's perspective. And then help them to address all the domains. I always think that you become a better clinician because what you learn from your patient. So that's all we need to do.

Ellen Bernstein-Ellis 46:08

I can't think of a better way to close this interview. Even though I could ask you several more questions, we could be here for another hour, I just want to thank you for bringing that patient's voice, a client's voice, into the discussion today, so beautifully. And let's end on that note of really learning from our patients' perspectives. So I want to thank you both. And I want to thank our listeners for listening today. And for the references and resources mentioned in today's show, please see our show notes. They're available on our website at www.aphasiaaccess.org. And there you can also become a member of our organization.

Jocelen Hamilton

Yes, yes, Do it!

Ellen Bernstein-Ellis

Thank you! Browse our growing library materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]

For Aphasia Access Conversations, I'm Ellen Bernstein-Ellis. And thanks again for your ongoing support Aphasia Access

Resources and References

Ariadne Labs: Serious Illness Care Program

https://www.ariadnelabs.org/serious-illness-care/serious-illness-care-program/

The Rome Foundation

https://theromefoundation.org/

Chen, A. Y., Frankowski, R., Bishop-Leone, J., Hebert, T., Leyk, S., Lewin, J., & Goepfert, H. (2001). The development and validation of a dysphagia-specific quality-of-life questionnaire for patients with head and neck cancer: the MD Anderson dysphagia inventory. Archives of Otolaryngology–Head & Neck Surgery, 127(7), 870-876.

Hamilton, J., Yao, T. J. (2023). Framework to Guide Whole-Person Care for Individuals with Dysphagia. 2023 ASHA Convention, Boston, MA.

Hamilton, J., Yao, T. J. (2022). Shifting to Whole-Person Care for Head Neck Cancer Survivors Living with Dysphagia. 2022 ASHA Convention, New Orleans, LA.

Hickey, E. and Douglas, N. (2021) Person-Centered Memory and Communication Interventions for Dementia: A Case Study Approach. Plural Publishing, Inc.

Howells, S. R., Cornwell, P. L., Ward, E. C., & Kuipers, P. (2021). Client perspectives on living with dysphagia in the community. International Journal of Speech-Language Pathology, 23(2), 201-212.

Kagan, A., Simmons‐Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, S., ... & Sharp, S. (2008). Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention. Aphasiology, 22(3), 258-280.

List, M. A., D'Antonio, L. L., Cella, D. F., Siston, A., Mumby, P., Haraf, D., & Vokes, E. (1996). The performance status scale for head and neck cancer patients and the functional assessment of cancer therapy‐head and neck scale: a study of utility and validity. Cancer: Interdisciplinary International Journal of the American Cancer Society, 77(11), 2294-2301.

McGinnis, C. M., Homan, K., Solomon, M., Taylor, J., Staebell, K., Erger, D., & Raut, N. (2019). Dysphagia: interprofessional management, impact, and patient‐centered care. Nutrition in Clinical Practice, 34(1), 80-95.

McHorney, C. A., Bricker, D. E., Kramer, A. E., Rosenbek, J. C., Robbins, J., Chignell, K. A., ... & Clarke, C. (2000). The SWAL-QOL outcomes tool for oropharyngeal dysphagia in adults: I. Conceptual foundation and item development. Dysphagia, 15, 115-121.

Nund, R. L., Scarinci, N. A., Cartmill, B., Ward, E. C., Kuipers, P., & Porceddu, S. V. (2016). Third-party disability in carers of people with dysphagia following non-surgical management for head and neck cancer. Disability and rehabilitation, 38(5), 462–471. https://doi.org/10.3109/09638288.2015.1046563

Shune, S. Moving beyond the isolated swallow: Dysphagia in the context of the shared mealtime. https://dysphagiacafe.com/2015/03/19/moving-beyond-the-isolated-swallow-dysphagia-in-the-context-of-the-shared-mealtime/

Shune, S., Davis, C., & Namasivayam-MacDonald, A. (2021). Contributors to Dysphagia-Related Burden Among Spousal Caregivers of Stroke Survivors. Archives of Physical Medicine and Rehabilitation, 102(10), e65.

Shune, S. E., & Namasivayam-MacDonald, A. (2020). Dysphagia-related caregiver burden: Moving beyond the physiological impairment. Perspectives of the ASHA Special Interest Groups, 5(5), 1282-1289.

Silbergleit, A. K., Schultz, L., Jacobson, B. H., Beardsley, T., & Johnson, A. F. (2012). The dysphagia handicap index: development and validation. Dysphagia, 27, 46-52.

Smith, R., Bryant, L., & Hemsley, B. (2023). The true cost of dysphagia on quality of life: The views of adults with swallowing disability. International Journal of Language & Communication Disorders, 58(2), 451-466.

Smith, R., Bryant, L., & Hemsley, B. (2022). Dysphagia and quality of life, participation, and inclusion experiences and outcomes for adults and children with dysphagia: A scoping review. Perspectives of the ASHA Special Interest Groups, 7(1), 181-196.

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.

I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's host for an episode that will feature Paula Valente and Dr. Assunção (Maria) Matos from the Portuguese Institute of Aphasia (IPA). In this episode, we'll be discussing Paula and Maria's role in building three dimensional social, LPAA in Portugal from the ground up.

Biosketch:

Paula Valente is a Speech and Language Therapist, social entrepreneur and responsible for the creation of IPA. She realized that there are important gaps in the therapeutic interventions that are offered to the person with aphasia in Portugal. With the support of partners in Portugal and in another countries, and with a team consisting of a speech therapist, a psychologist, a social worker and volunteers, Paula is convinced that the path will not be easy, but it's possible.

Dr. Assunção (Maria) Matos is a Lecturer at the University of Aveiro in Portugal. Her work is grounded in the WHO-ICF model and social, LPAA approaches to aphasia rehabilitation. As one of Paula's teachers, she influenced the development of the IPA and is a crucial partner in the innovative programming that they offer.

Take aways:

• Shift to Social Approach: SLPs in Portugal moved from a medical model to a social approach in aphasia intervention, realizing the limitations of traditional speech therapy alone.
• Comprehensive Support Program: EPA in Portugal offers a wide range of services, including therapy, psychology, and caregiver support, aiming to enhance the lives of people with aphasia and their families.
• Limited Services in Portugal: EPA is the sole organization providing such extensive aphasia support in Portugal, serving the entire country, with an emphasis on online services to reach distant regions.
• Professional Training Focus: Assunção Matos emphasizes holistic training for speech-language pathology students, preparing them for diverse practice settings by exposing them to various intervention approaches.
• Fundraising Challenges: EPA faces fundraising challenges in Portugal due to limited access to funds and philanthropic support. To sustain their services, they generate revenue through clinical services, therapy programs, online courses, and book sales. They also have associates who contribute annually. Despite challenges, they are working to demonstrate the effectiveness of their approach to gain government support for sustainable funding.

Interview Transcript:

Jerry Hoepner: Well, it is my privilege today to have a conversation with Paula and Maria. So, we're going to just begin talking about the programming that they've started within Portugal. And I'm just really excited to have this conversation. I think this is a unique conversation for aphasia access. Because we're really get to talk about the process of building a program within a country from the ground up from scratch. So, I think we're used to stepping into this process partway through and again. This will be a really fun conversation. So welcome, Maria and Paula. And yeah, welcome to Aphasia Access.

Assunção Matos: Okay, thank you. Thank you, Jerry, for the great opportunity of being here with you, sharing our experiences and our dreams. It's an honor to be here with you. Honestly, thank you.

Paula Valente: I make my [unintelligible]. It's the same. Thank you very much.

Jerry Hoepner: Absolutely. I have to say I was really privileged to have some conversations with Maria and Paula at the IARC Convention in Philadelphia last spring. So got the opportunity to meet there. And obviously really interested in learning more about your work and programming that you started in Portugal. So. we were talking just before this podcast about your name, and then you call it the EPA or the I.P.A. I was saying that in a in English we'd probably call that the Portuguese Institute of Aphasia. But I'll let you explain the name a little bit from the Portuguese standpoint.

Assunção Matos: So, IPA is Instituto Português da Afasia the so it's exactly what you were saying in in in English. I.P.A. is known as EPA all over all over the country and it was decided to call the association like this? It was actually it was Paula's decision. Paulo, do you want to say something about it?

Paula Valente: No, we just at a name to our legal name is another one, because in when we did the registration of the organization, we had to choose another name. So, our name is Afasia. It's like, if IPA. Afasia Epaphazia. So, our organization of the legal name is Epaphazia. But the trademark Is Instituto to Portuguese Epaphazia. That was the Portuguese Institute of Fascia. When we choose this name it was a little bit scary, remember, as soon, so I don't know if because we were afraid to do. To tell people this is a big thing we are a Institute is an institute is a reference is something that sounds like very credible. And we want to do that. But at the time it was the beginning, and we were like, I hope this will work. So was like, okay, let's do. Let's do, Let's do this with this big name, impressive name. And what's also a strategic name to show the people that we were doing something with something good, something with good basis and good principles, and the with and impact to the person the people with the afasia. So, we were a little bit afraid at the beginning, but with the responsibility we were taking. But I think it was the right choice.

Jerry Hoepner: Yeah, I agree. I think it's a great name and thank you for filling in a little bit of that background. In full disclosure. There's no way I could pronounce the Portuguese version of that name. So really happy to have you do that? But yeah, this really speaks to that kind of building from, you know, from the ground up from scratch. Paula, I'm interested in a little bit more on that. How did the EPA or the EPA come about?

Paula Valente: Okay. So, I was. I've been a speech therapist since 2008, and I did my practice with a Assunção. She was my teacher in the hospital and maybe she can tell a little bit. She influenced me at the time because when I finish that practice internship, I was convinced that my mission, my life mission, and my professional vocation was to work with people with aphasia in a socio model or in more psychosocial model, because she taught me that in the hospital. So, from there I study about that, I did my master in that field like my master. I'm sorry about my English, so try to understand me, please. My master was about partner training aphasia partner training, communication training. And from there I was convinced that I had to do more to help people with the Aphasia to live better, besides the aphasia I was working at the same time in hospital context, public one. And I was also working in a private clinic with patients with a phase. So, I saw the difference of get to work in more functional and communicative way with the people, with the, with the person, with the patient and his family, and in a medical model. So, I was seeing the differences I was studying, and I thought no, I would love to help the people with the aphasia to in Portugal, because I was also understanding better the public services to this, this to these persons to person with aphasia, and I started to feel that I could do more. Something started to make me dream about a common community program or center and at the time I had to I did the A social internship course, Intensive program training program that give tools that I needed to start making my dream a reality. So, at the time after I did that social entrepreneurship course, I said goodbye to my jobs and I started a pilot project. The name of Pilot project was Aphasia 3D. Because at the time I thought already to work in 3 dimensions, person with aphasia, family and friends and community. So, to achieve a better life with the aphasia I needed to working that 3 levels. So, the pilot project was aphasia 3D was the name but when he I did my pilot project I called was from Zoom at the time she was my teacher, but also she gave me orientation in my thesis master thesis a project and I call, and I talk. I talk with her. We had a conversation about these, and she was a big supporter. So, she at the big since the beginning, she told me. Paula, I am with you and I will help you. I will be on your side. Let's go. So, she was very, very important. Since the beginning, since everything I don't know. So, add in the final of that. Here the pilot project began and we started to invite some people with the aphasia, some family members, some friends of mine to be the social organization. I don't know. How do you say in America. But we, when we, we have to have a group of founders to register our organization to founder organization, we have just say, let me see. I think it's the Board of the Association. Yes, it's like we have the board. We have a structure and we invited people to do that with us. And then, born the organization the ONG EPA institute together the maybe I can now talk more about what we do but maybe someone can explain better how she influenced me to do that, because is also our passion.

Assunção Matos: Well, first of all, first of all, I think I need to do a clarification. My name is Maria. I'm also Assunção, so when Paula is talking about this and some, I'm the same person to say and all other people from other countries, what can I say? I started as an speaking language therapist in the nineties and my first job as an SLP was in a cerebral palsy center with children and their families and indicators and in this kind of center we were very already at the time we were very focused in intervention, on communication. So, it was really common to work with the children, with their family members with the augmentative and alternative communication systems, low high technology. So, this was very common for this population already. So when I changed my job 2 years later, and I went to a central hospital with people with aphasia, my idea of working as an SLP was, you know, focused in communication, and not just in speech or language but thinking about people with the aphasia at the time. The medical model of intervention was the strongest one in hospitals in Portugal, maybe around the world. I'm not sure so when I started working with my patients, I thought I have to do more. This is not enough, so I was not happy about what I was doing, because after months and months of therapy my clients, they were just looking the same. They were not improving their functionality, or they were not doing their lives, as I thought they could do if I did something different. So, I start looking. I went to congresses. I went to the International Society. How many different alternative conferences by the time in the Netherlands, and I started looking, for no one uses AAC with the people with the aphasia So I started also looking for papers, and then I could find Linda Worrall, Aura Kagan, Audrey Holland and I started dreaming. So, policies, EPA is my dream, and I used to say that Paula did what I wanted to do, and I was not able to do because I couldn't just quit my job As she did so, I started at the same time I started teaching in the SLP course and in 2000 the ICF appeared. I'm trying to jump, not to be too boring and everything made sense to me. So, I started looking for different ways of working even at the hospital, and I started bringing the family, bringing the family members to the hospital. I started them trying to train my patients with the total communication approaches. I tried to do my best, because it's not easy in a medical context, you know, to change minds and to change in. That's why, Paula, she's saying she came to me as a student. I was doing this this kind of job. I was trying to apply what I've learned from AAC and children with cerebral palsy, and I was doing some experiences with my patients And also suddenly I met some people in in the Isaac Conference that I told you about few minutes ago and I got involved in a multinational project where we were trying to develop a specific software for people with aphasia to communicate better with a portable AAC device, I can say I'm very proud to be involved in in that project. And so that's how I started. That's how I started.

Jerry Hoepner: That's fantastic. It's just been fun listening to your story kind of a microcosm of things that have happened in other countries, I think, in terms of moving from the sense of the medical model isn't meeting the needs of the people that we're serving. I heard, you know, just a little bit of some of my conversations and everyone's conversations with Audrey over the years so we shift from a very medical behavioral approach to one that is more of a social functional approach. I can just hear those same threads kind of being woven into your stories. And just really, really interesting, I mean.

Assunção Matos: Sorry. Sorry, sorry, Jerry. It's just to say that in Portugal no one was then I know no one was working in this swaying, in a more social approach. And Internet wasn't like it is today. So it was really hard to get access to the papers. But I also remember buying the book beyond the fascia from the connect in London and I got in love about connect. Yes, I still have it here also. And I decided, I said to my husband, I have to go to London, and I decided to go to the connect and see how they were working, and do the training the trainers course that they were that they were well, I was trying. It was hard, but I was trying to do it in a different way, because I could see my patients after months and months of therapy linguistic therapy it wasn't enough, and I felt I have to do something else.

Jerry Hoepner: So insightful. And I think so many people have come to that conclusion about social approaches and the life participation approach. That Doing those impairment-based pieces alone is just not enough right? Not that they don't have a place, but alone. They're not enough. I think it's really great. I was thinking about Paula's thesis on communication partner training, and how that must just sprung out of all of these discussions, and certainly just central to a life participation approach. The other thread that I kind of heard from both of you is this idea of the dream that you started to have to create something to fill this gap? Maria, I like the way that you said that? You know you started dreaming, and Paula made that dream happen.

Paula Valente: Maria knows that I am the crazy, 2 of us is necessary courage conditions of obviously, because as the sun sounds said I was married. But I didn't have children yet. So, at the time I thought, Okay, it's now or never, because soon I will have my family, and it will be very difficult for me to do this kind of choices to quit my jobs. Goodbye, my jobs! No, so it's now, and never. My husband was still in love with me so at the time was easy to convince him that I wanted to do that. I quit my job at that time. For the beginning of EPA. I was doing voluntary work. I did all without receiving anything, so that was not easy. Choice but it was necessary. A little bit of courage and a little bit of craziness like I was. We were doing something that's in Portugal. We don't. We didn't have a big organization behind us or supporting us. So, in terms of giving us the structure or the security to do something. So, It was like doing a house from the 0 from the ground, so didn't have any money at all. So, everything was started from the 0, and it was a little bit scary. And III admit that I was a little bit crazy, but I think and persistence, because the difficulties were, and they are so almost 9 years later it years later, 8 years later, we are here but this is a big adventure, and he in still is

Jerry Hoepner: Courage, persistence, a little bit of risk taking I'm not going to say that you were crazy, but those are things that help you move it along, and I can see now why you so connected with Maura Silverman and the Triangle of Aphasia Project.

Paula Valente: Yes, she was the biggest, when I started. I also. II remember very well to be on the aphasia, because the book, because when I started, my internship gave me the book to read, and I was like I come from the school with a medical model mindset, like language and speech, and she gave me the beyond the feature read this. And let's think about this in your internship. So, when I started to, okay, let's think about these programs. This center I went to connect also was my first experience with the center personal experience. And then I contact there numerous centers around the world, mainly in America, of course, but also some here in Europe and Australia to learn from them, to learn from the programs, to learn about the programs, about the social, the about the business model, how they sustain their activities, how they communicate with the community, how they articulate with another organization. So I did a lot of contacts, and I talk with many people and Maura was one of the most the most easiest person. I don't know how to say that sorry was very available, and she talked and she wrote a letter of support. She was incredible, so that was very important to me at the beginning to start to organize the structure of our programs. I can explain how we work at the moment. what we do at the moment. But I want to say also that many things have changed through the years. We learn a lot with experience, with the errors, with the feedback. That person, either. Persons with aphasia and their families told us so. We learn every year we did changes about the protocols, about the instruments about the programs, about the number of persons that we involve, the number of Anyway, many, many changes were done. And I think we will. We will do that kind of adaptations along the way, because they are very important to achieve our goal better. Okay? So, we have to listen to be aware of the impact, the results. The feedback is very important to getting better. Okay? So, what we do now is, I think our better version of the programs but I think maybe in 2 years we will be doing things differently.

Jerry Hoepner: That makes sense and I think you approach this whole process in the right way by connecting to those people. And you know everything you said about Maura rings true, right that she's available, and she is excited to get me going and to share my knowledge. So why, so I would love to hear about what you're doing right now. I think you said 9 years it's been so...

Paula Valente: We, 1916 was the founding year. I started the pilot project in 2015. So, I quick myself therebefore. So, it's almost 10 years in this adventure. It's all. But the organization is only 8 years. So, when our main objective with our association, our mission is to improve the quality of life of people with the aphasia and their families so to do, that we have to we organize our working 3 targets out all the targets. Population. Okay, audiences. Okay, we work with people we work with. And for people with aphasia themselves we work with and for family members and friends and we have we have to work to the community to a more inclusive and community communication accessible community. Okay, so we have activities actions in the these 3 main, groups. Okay, for these 3 main groups for the people with aphasia and the families we have. Hmm, 2 responses. Okay, we have resources and information we wanted to give them the more resources, more information about the aphasia, about how to leave with the aphasia, how to recover the path that the different teams that are important to them to learn more about what aphasia is And now to leave with the aphasia So we work a lot to offer to Japanese to offer resources and information in our websites in our social networks, with lives in the Facebook, with conversations online, with the workshops, with events, to talk about aphasia, to inform, etcetera. So, we work a lot to give them resources and information free for free. Okay, that's when before EPA, It was very difficult to them to find anything in Portuguese. Okay? In the Internet, or in another ways, in books or in La leaflets, leaflets. Okay? So, they didn't have many choices, many options. So now they have. If they go to our website, to our YouTube channel, to our net, Facebook, page, Instagram, they have videos. They have aphasia friendly videos. They have informational videos. They have testimonials. They have documentaries. They have many things in English that we put legend, subtitles. So, we work a lot in this field of information and resources. Okay at the same time for people with aphasia and families, we develop programs. Okay, you call programs in America and we in Portugal, we don't call that programs but we called like therapies. Okay, it's more the term for us. Your programs for us. We call therapies. We develop different therapies to give responses to the aphasia, the necessities, communication, necessities, and the goals of people with aphasia ask us for help. More concrete, more rehabilitation help. So, at the beginning we were doing only group programs. Okay, with many different types of groups. Okay? But at some point, we saw that was not for some people that was not sufficient because they needed help to communicate better, to develop resources for themselves, to adapt better to aphasia to work some psychology, psychological problems or family problems. So, the group conversational groups, communication pho, functional communication groups, they were good, but they were not, some of them to respond to their particular needs. Okay? And we started to do individual sessions with them also. So at the moment we have like a program, a response to them. So, it's like a service. Okay? That when people with aphasia ask for our help to live with aphasia, to have speech therapy. They want to. They ask us for a specialist. So, they see if a specialist team, so they ask us to help them. So, the first thing we do is an assessment, and the that assessment includes not only the language, the impact of aphasia on the language domain, but also in the participation activities like psychological states, family members, networks social network so we have, we do a global holistic assessment and then we have a reunion. We have a session that we call decision reunion. In that decision reunion we discussed with the person with aphasia in an aphasia friendly way. So, with communication, support to conversation, communication and we show the results. We explain what the evaluation show us and we discuss in in with them their main goals and then we make together a plan and that plan is not only to do things in EPA is not that focus. So, the plan is out. What I can do at the moment to feel better, to achieve my goals. Okay, something, some things they can do with our support. But other things they can do outside. So, we also give them another options. We talk with another professionals or organizations, and we help them to make decisions and go through the process. So, if they want to do something with us, we have only three objectives in the center of the process. So, everything they do they do to achieve the objectives that were clarified in that discussion in that conversation initially and then we start doing. They can do with, not with us individual and group sessions of speech, therapy, psychology, neuro psychology, communication training. All of these approaches are personalized. They follow the pace of the evolution of the person and their needs. And we also and they are all very different. So, some of them do only individual start from start doing only individual sessions. Then they go to the groups. Some of them do only groups, some of them do groups and individual. It depends on their path, their situation, their goals, and the in the continuum of care. So, where they are okay, so with the family members is the same. They are very involved since the beginning, so we will offer to them individual or group sessions that go that will help them in their needs. So, from the beginning and along the way we are always talking with them and give them what they need. So we have also caregiver groups and communication training groups and communication training individual sessions everything to promote adaptation to aphasia, to improve the relationships, the well-being, the success of interactions. We promote also meetings with people with the aphasia, and there, another with them. Sorry. We promote. Provide also meetings with another family members and in in group sessions it makes sense. Sorry about my English.

Jerry Hoepner: Totally makes sense, Paula. Well, you have a just a breadth of services that you offer, and I know those have evolved kind of over the years, but very collaborative, very person centered. It seems like, you've really thought this through. You've obviously brought upon a lot of resources to do that. A couple of things I wanted to know. One is you mentioned those video resources and other resources. We'll make sure that those are available on the show notes, so people can connect and check those out even if like. I watch some of them and just to get a little taste of what they look for obviously, I don't switch Portuguese, but just valuable just to have those resources. The other thing I'm wondering about is what's the area that you serve. I mean because it seems like you may be one of the only collaborative social programs in your area.

Paula Valente: Yes, we at the moment. If you want to say something, please interrupt at the moment we serve. All the country we are. We are not a big country, but unfortunately, people with aphasia in Portugal they don't have many choices, and after the rehabilitation centers or the care the main public centers that in the acute phase they go, they get, they go there, and then they go home. When they go home, the choices to continue the rehabilitation are very few. And we in Portugal we are the only organization that are doing this work, and specifically with aphasia. We people with aphasia. So, we receive calls from all over the country and, but we are in Portugal and that is the second main city in Portugal. So, we have Lisbon. That is the capital, and then we have Porto is another big city, but in North and we are in Portugal. So, we can't see everyone in Portugal, mainly the people that live near us but with COVID we started to do many teletherapy and now we have almost 50 people with aphasia doing online services. So, at the moment, we have also online groups and individual online sessions and consultation sessions that are like a specialty consultation that we do to that families that only want some someone who helps them to decide things to understand what to do next, and that help us help them to decide what to do. So, we do a lot of consultation sessions that are more periodic and we go through. We. We've talked to them through the year to see how things are going. and to give them more information about what they should expect from the rehabilitation, from the therapist, from the communication, and give them psycho education, but also orientate them. We do a lot of that kind of in-service. Okay. So now, we have many people in our presential activities in our center. But we are the only organization in Portugal. So many people from other cities are asking for help and we are trying to go to Lisbon to create some groups and some enlistment. But Lisbon. But it's something that takes time. Okay, so it's another something that will take some time to happen. And this year as soon sound, Maria will start a group also in the university. So, it's something this kind of different points of presential group. Presential groups. I think, will be the next step to give other options to the, to the persons with aphasia in Portugal.

Jerry Hoepner: Wow! What an incredible breadth of services, and literally in in terms of area. I can't imagine serving all of the people with the face that in State of Wisconsin, which is probably smaller than Portugal. So that is that's really incredible. And wow! What a service! And I want to shift gears a little bit and talk about training professionals and students, because I feel like that might be an important step for having a broader network of people that concern people with a phage throughout Portugal. Maria, are you willing to talk a little bit about some of the trainings that you've done with professionals and your connection with the university and training students?

Assunção Matos: Yeah, yeah, I can only tell you about my experience. There are other schools SLP, from my perspective. What I tried to teach my students is a bit of every type of approaches, because in one side, I know that when they go to their practices, they will find some places where the medical model is still very active, so I have to prepare them in order to know how to work with people with the phase in a more linguistic approach. But at the same time, I try to tell them about social approaches and about live participation approach. And II it's not easy, because I don't have much time to do it. But I try, you know, I'm a really big fan of the ICF so I try to prepare them to know how to work according to the ICF and how to work in the different domains the ICF suggests at the same time. We have established the Protocol with the IPA at our university, the University of Avairo. So, my final students, some of them those who want to work and wishes to do their practices in the field. Some of them are going to the EPA for 16 weeks and they do their practices there, and also during that that the time they have to develop an investigation project. So, most times I try to see with Paula we share the needs of the IPA, and we try, you know, to go and to work with the students and try to do some investigation that has an impact for the EPA and for the colleagues who work there. And this is this is great work. At the same time, just to finish me and Paula, we have been doing the SCA. The supportive conversation with adults in Canada and since then, we are doing lots of lots of workshops with the health professionals in many different hospitals. I'm also trying to do some investigation about it, because we don't have it in Porto. Well, so I tried to involve my master students and we are, you know, working together, trying to change minds trying to change the settings in order to people with the face you to leave better from the beginning, when they wake up in the hospital. If they have their health professionals prepared to communicate better with them. We read it from other countries, and which really believe it. So, we are trying also to make some changes and I've started also last year. Doing some SCA work with the other students from other courses. In my university we have nursing students. We have physiotherapists. And we have radiology students. So, at the beginning of the of the year we are doing some online courses to prepare them before going to their practical settings and communicate with the people, with aphasia, or with other communication disorders. So, this is my experience. This is what we are trying to do.

Jerry Hoepner: Such important work I can't imagine. I've had so many kind thought leaders and researchers and clinicians that have guided me in this process, and that it wait so much of that groundwork out. So, I just can't imagine building that from the start. And what you're doing is so important.

Assunção Matos: This year we are planning to start group therapy with people with the face, you know, because I am at the moment I am 100% at university. So I left my hospital and I really miss my patients and I miss, you know, to do the to be an SLP in practice And because there are not many groups in the country, as Paulo was saying. So, we are trying to organize group therapy for people with aphasia, maybe to do also some work with their family members and the idea is to do the group therapy and trying to do some investigation at the same at the same time. Now it's better going to be the challenge for this year for me.

Paula Valente: I just want to say that at the beginning we were offering some workshops and training for the professional health professionals about aphasia, about how to communicate, and other topics that are important from for them to manage better the person with the aphasia since the beginning and we started to see that the health professionals. They don't have time to do training and they don't have money they don't have. They don't want to invest in this kind of training. They want training, but they want that accessible for them so it but the accessible means free without costs and preference in their setting. So, we have to go there to give them the training, because if they have to go some an another place, they don't go. So, where LPA was finding these things and was okay, what we can do. So, one of our works was to find funding programs to fund 2 projects that are, that the main objective is train, the health professionals to communicate. And so along these lines, we did a lot of free training in settings like hospitals and rehabilitation centers, and main mainly financed by those kind of funds.

Assunção Matos: Let me just highlight that we are not doing this training alone. So, we are involving people with aphasia in the training. So, we, me and Paulo, we explore the more theoretical parts and then we have people with the aphasia, with us who are the trainers in, you know, in in practice. And II also would like to highlight that this is something that we have tried from the beginning to involve people with the phase in their family members. our Vice President is a woman with the aphasia we have some family members that belong to the Board of EPA. And we from the beginning. The idea was, as Paula already said, work with them and for them and I think this is something that is really is really important. And it's very, you know, for us it's very good. It makes us feel very good about it.

Jerry Hoepner: Totally agree. And I mean, it is really impressive that the amount of work that we've been certainly important work. And I get the feeling that the 2 of you probably don't sleep a whole lot. You're certainly doing a lot. I don't know a lot of good things, and you're doing them the right way. So maybe I can shift gears one more time. To talk a little bit about the business end of things. cause that's a part of building from the ground up. Would either, if you like to start talking about your model.

Paula Valente: Yes, since the beginning we wanted to be a social entrepreneurship project. So, what is that? We want to solve a social problem that the public services weren't solving. So, we have innovative responses, services, resources but we also have business model near underneath that because we wanted to. We thought, and I think I'm sorry about my English. I can't I my English day. II feel like I have a aphasia because it's like II know everything. I know what I can. I won't say, but I can say it. I don't speak English every day, so I'm sorry I'm not in the academic field, so I don't have many, many opportunities to train my name, my English, what I am saying our goal is to be sustainable and I personally believe and I think that the EPA boards are completely aligned with this is that the solutions that EPA offers to people with aphasia are not only our responsibility to sustain, to provide is something that is a responsibility from all is responsibility. Okay, I, Paul, sound the board. All this, the people involved that we have the responsibility to, because we started that. So, we have the responsibility to provide the organization, and guarantee that all is working. But in the end, the solution doesn't depend only on EPA, we need the community to achieve our goal. We need the people and their families to achieve our goal. So, everyone as responsibility in this this is, I don't have anyone with aphasia in my family. I could have aphasia someday but is not only my responsibility to bring this to the community, or somebody that has aphasia is our responsibility, because in the end some of us really have aphasia. My family member, my neighbor, also is our responsibility. So, when we started this organization, the social organization. We want it to be sustainable. But we don't want it to be depending on funding on the States because many of our social organization in Portugal. They have the tradition of being funded by the States. They are. They have a lot of funding that comes from the States and that is a problem, because states they don't have many money to owe it. So, they don't do the better job because they don't have money sometimes. Sorry about my English. So, we thought, if you want to do better than the State, we don't, If they have a responsibility. We want them to participate, but they don't have the only responsibility we have the wrong responsibility. But the piece, the person with the aphasia and their families that are beneficiating from our services. From these services. From this organization they also have to compensate. And as organization, we have to be aware that to be accessible to all okay, we have to be open to different kinds of participation. So, people with aphasia will compensate will pay for some services in different ways, in different measures and that was the difficulty we had to the term to at the beginning. We have to think about how to do that. So, at the moment, we have different recipes.

Jerry Hoepner: If we put maybe multiple different funders sounds like that are contributing. Is that what you mean?

Paula Valente: So, we go get money from different our services, clinical services, our programs group programs, okay and individual programs. So, people with aphasia pay for part of it. If go do fundraising to pay another part and our and our objective, our goal is the community, the municipalities and the state pay another part. So, we don't have to lose our sleep. Doing fundraising is very difficult in Portugal, I think, from what I learned from other centers, our reality is different in Portugal. We don't have many we don't have access to fundings and programs and investments. And the philanthropic minds is not something very easy in Portugal, very available. So, we do fundraising in Portugal and do fundraising to help people with the aphasia. What is aphasia? What is that? So that is very, very, very, very, very difficult. So, we need to involve people with aphasia. So, they pay for their services for our services. They pay for our therapies, but they don't pay for resources. They don't pay for information. They don't pay for workshops for some of if events that we do that are open and they are invited to come. But therapy with therapists that we have to pay. They have to pay also we have services. We sell courses some of online courses. We did. In our websites, you can see mainly in Portuguese. But we have online courses with very good programs, very good professionals, international colleagues that help us to do the courses. They are another source of income, not a big one, but they help. We did a translation of some communication books from Aphasia Institute, and then we sell them to give us also some in income. So, we have members of our association and pay a contribution. Yes, like every year they pay a contribution. So, we have, some associates that do pay an annual contribution. We do a lot of fundraising and we try to develop more services to, not to people with the aphasia, but professionals that give us income to sustain the organization. So, it's a hard work. But it's in the beginning, because we, it's difficult to involve the municipalities and the States. In these solutions we have to prove that they are better, or they have major impact in in the lives of the persons with the aphasia, but also in their pockets the state pocket, because we have to prove that our support, our kind of approaches make more difference and the people with the aphasia that stay in the State. The public services consume more resources during more time And they don't go. They don't achieve their goals in the end so we are now trying to show the Government our model of work may for the in the future they maybe support some incorporate some of these approaches in their public services. So, it's another way to support.

Jerry Hoepner: Yeah, that's it. I was going to say, yeah, that's a lot of work to do. I mean, you're providing all of the services you're providing a lot of the fundraising and providing a lot of education to students and professionals throughout the country at no charge in many cases. So certainly, this is a grassroots ground up kind of work. it has been a really fun conversation. And I think we did continue this conversation for hours. It sounds like, but unfortunately, we have to close it up at some point. I just want to see if there's any last thoughts that you want to share with our listeners.

Assunção Matos: I just want to say that it looks like it is a lot of work but I really believe in what I'm doing. I still dream Paula is doing one of my dreams, but I still dream that in the future, if I have aphasia, I will find one of my students doing the best job with me. This is my, this is my dream. That's why I believe so much in what I'm doing in And I'm always trying, you know, to move on into and to do different things and best things because I really don't want to face the difficulties people with the aphasia yet face in Portugal, because it's different to have aphasia in Portugal, or to have aphasia in Australia, for instance and I want to do my best job so I can enjoy it in the future.

Paula Valente: I just want to say it's really worth working on a live participation approach, because it really makes all the difference in the people. It's an adventure but it's worth it. And I hope that this conversation inspired other colleagues to do the same, or to continue doing the same.

Jerry Hoepner: Absolutely. I think that's a great way to end. Thank you both so much. You've been just great to have this conversation with. Really enjoyed it, and I know that our listeners were will enjoy it like you said. I hope this inspires someone else to take on this kind of work. So, thank you so much.

Assunção Matos: Thank you, Jerry. It was a pleasure.

Paula Valente: It was a pleasure. Thank you for the opportunity.

Jerry Hoepner: You're welcome.

Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.

Resources:

Online courses with national and international lecturers: https://ipafasia.pt/formacao/

Mobile application for communication support and functional and social interactions: https://ipafasia.pt/aplicacao-movel-da-afasia/

Info-graphic videos: https://ipafasia.pt/videos-informativos/

I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA's strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's host for an episode that will feature Dr. Kelly Knollman-Porter, who is a 2023 recipient of a Tavistock Trust for Aphasia Distinguished Scholar Award, USA and Canada. She will discuss how her interest in auditory comprehension and severe aphasia led to her work on reading comprehension.

Guest bio

Dr. Kelly Knollman-Porter is an associate professor in the Department of Speech Pathology and Audiology at Miami University. She directs the Neurogenic Language and Cognition lab, where her clinical research focuses on the development of supports and strategies for adults with aphasia to facilitate reading and auditory comprehension. Her research also explores the subtle reading processing differences exhibited by adults with aphasia through eye tracking technology. Dr. Knollman-Porter directs the Miami University Concussion Management Program, where her secondary research focuses on the development of assessment measures and treatments to manage the cognitive and communication challenges often associated with mild traumatic brain injury. She has over 30 years of experience working directly with adults with acquired brain injury.

Listener take-aways

In today's episode you will:

• Learn about how wanting to help clients with severe auditory comprehension challenges motivated our guest to pursue her doctoral degree after 15 years in clinical practice

• Consider some of the challenges SLPs face in assessing reading in clinical practice using current standardized measures and learn about some advantages of incorporating a reading questionnaire and close observation for getting a better understanding of your client's individual reading style, preferences, and needs.

• Explore the contribution of text to speech (TTS) to the dual modality model for supporting reading success at the book level and some of the critical factors to consider when implementing this strategy with clients.

• Investigate how eye-tracking technology can help us gain insight to an individual's reading strengths and patterns.

Show notes edited for conciseness and clarity

Ellen Bernstein-Ellis 00:10

Kelly, let me just pause and say welcome! Thank you for being here.

Kelly Knollman-Porter 01:02

Thank you for having me on the podcast. I'm so happy to be here.

Ellen Bernstein-Ellis 01:05

I am so excited you're here today. And as we talked, we always have a pre-meeting where we get to plan what we want to talk about in these podcasts, and as you know, I'm so excited to talk about book clubs and reading strategies. Thank you so much for being our guest today.

Kelly Knollman-Porter 02:23

Thanks again, Ellen. And I have to thank you for your foundational work in the area of reading. You can look back at a lot of the articles that myself or my research team have published and we reference you quite a bit. So thanks for your work also.

Ellen Bernstein-Ellis 02:39

Thank you for that kind, kind mention. I was very fortunate to partner with Dr. Roberta Elman to create the Book Connection at the Aphasia Center of California and be part of that body of work.

We like to start with an icebreaker to give our listeners a chance to get to know you. I will open by asking you to share how the Tavistock Trust for Aphasia Distinguished Scholar Award has or you think will impact your work?

Kelly Knollman-Porter 03:06

First of all, I'd like to just take a moment to thank the Duchess of Bedford and Nicole Campbell from the Tavistock Trust for giving me this honor. I was just so surprised and excited to hear when I was given this award. I had the lovely opportunity a couple of years ago at a Clinical Aphasiology Conference to meet both of these amazing women.

I've been so impressed by the work of the Tavistock Trust. It's not just work in the UK, they have spread this out across the globe. They really have done so much to not only help people with aphasia, but also help educate the public about aphasia, help us as clinicians get connected, and as researchers get connected in order to stay abreast of more recent research that's coming out in terms of helping people with aphasia. I am just so thankful and appreciative of receiving this honor from this great organization.

But how will it help me? I can honestly say that right now we're in the process of starting a new study and through the support at the Tavistock Trust, we are going to be able to provide funding to help support these research studies and hopefully get some of these funds back into the hands of our participants. I'm excited to keep that research moving through their support.

Ellen Bernstein-Ellis 04:42

That's great. That was a really nice and gracious recognition. Yes, we're so appreciative of the work the Tavistock Trust has done.

How about if we open by sharing a little bit about your professional journey? I think you considered yourself a non-traditional doctoral student. You said you returned to get your doctorate after about 15 years of practice. Tell us a little bit more about what you were doing when you decided to return to your doctorate. And what were your passions that inspired you to return to school? Not an easy decision, I would guess.

Kelly Knollman-Porter 05:19

No, it wasn't. I can honestly say I wasn't looking for it. I was very happy in clinical practice. I worked in a hospital for 15 years before coming to academia. I loved working in the medical field. I loved collaborating with other rehabilitation professionals, dieticians and physicians. I was very happy working in these environments. But Miami University actually reached out to me. They were wanting to further develop their adult program and they said, "Hey, will you come to academia and share some of your clinical knowledge and also lead the Miami University Aphasia Support Group?" They knew I had always had a long interest in working collaboratively with people with aphasia and clinically. So they asked me to come. I have to admit, I turned them down a couple times. And then finally, I made the big plunge and said, "Why not try it?" I wasn't really seeking it out.

Originally, however, I was reaching a point where I was becoming frustrated with some of the reimbursement issues we were facing clinically. When working with people with aphasia, I sometimes felt like insurance was dictating how much treatment I could provide and how long I could provide it, even though I felt like many people could continue to make progress. I just felt like my hands were tied, and I was restricted. That was frustrating to me.

I have to admit, when I came to academia, I was thinking, what can I do in order to explore this further? How can I potentially contribute to the research base in order to provide evidence to show that people with aphasia can continue to make progress, not just months after diagnosis, but 5, 10, 15 years? Because as a clinician, we've all seen it, absolutely. We know that people with aphasia want to continue to actively participate in life activities. And they can, if given the opportunity and the support. So, when I made that transition to academia, I quickly made the decision to go back and get my PhD. Primarily focusing on clinical research, specifically with people with chronic aphasia,

Ellen Bernstein-Ellis 07:52

I am sure that there are listeners out there who may be sitting on that fence as well thinking, Should I do it? Should I pursue this doctorate? I just want to acknowledge and honor the challenges of being a doctoral student, especially while also being the parent of young children, but I just think it should be recognized. I was wondering, what was the best advice you got from your mentors? Because I'm sure you reached points in that process where you wondered, was this the right thing? And I want to support listeners who are out there thinking, "Can I do this? Should I do this?"

Kelly Knollman-Porter 08:30

It definitely required a team. When I decided to go back get my PhD, I had a 10 year old and a five year old. That just requires a lot of work, going to things after school for them and keeping your family a priority, but yet still working full time getting your PhD while commuting. And coming back, a special shout out to my spouse, who helped me keep all the balls up in the air. My family came along. I had amazing support from my in-laws and my parents, in terms of helping pick up the kids when needed.

But I'm not going to lie, it was a challenge. And there were times when I wanted to throw in the towel. I wanted to say, "You know what, this is just too much for me to do right now." But I did have people that came alongside me, that kept encouraging me, saying "It's okay, stay the course, what you're doing is good, and don't lose faith."

I have to give credit to Aimee Dietz. Dietz was my dissertation chair and she was very encouraging, supportive, and understanding that I was a mother and I had a life outside of PhD and work. She respected that. It was funny. She ended up getting pregnant at the same time and had her child. So I think we kind of supported each other through that. But one thing she said to me that I always remembered because she knew I loved clinical practice. I was like "Amy, maybe I should just go back to clinical practice?" And she said, "Kelly, you realize that your research is going to touch more people then your clinical practice." Not downplaying clinical practice at all. But she said, "Your research has the potential of spreading information not only across our small geographic Midwest area, but also across the country and across the world."

Ellen Bernstein-Ellis 10:35

What a wonderful piece of advice. No surprise, what a lovely mentor to have.

Kelly Knollman-Porter 10:39

Absolutely. I think I told you this before, there was one very difficult day that I was having. My family was sitting around the dinner table and the house was a mess. I had grading to do and I said to my husband, "I'm going to quit, I'm not going to get my PhD." And my 10 year old daughter was sitting there and her name's Anna. And she said, "Mom, what would you say to me if I told you I was going to quit something?"

Ellen Bernstein-Ellis 11:11

What a wise 10 year old.

Kelly Knollman-Porter 11:13

And at that moment, I realized that people were watching and other women might be watching and saying, "Hey, stay the course, persevere." I am proud enough to say that that same daughter just recently graduated from vet school with her DVM and I hope that my perseverance helped her persevere also.

Ellen Bernstein-Ellis 11:36

I love that story. Thank you for sharing it with our listeners today. Your doctoral work originally focused on the treatment of auditory comprehension in severe aphasia. I know that was one of your clinical loves. I want to recommend to our listeners since we can't cover everything today, your 2018 article, we'll put it in the references of the podcast show notes, about intensive aphasia auditory comprehension treatment.

Why don't you share how you became involved in reading comprehension? Because you started out in this auditory comprehension world, right?

Kelly Knollman-Porter 12:13

Absolutely. Well, again, I really feel like comprehension is instrumental. There's been some work done that says people with auditory comprehension deficits, the more severe the auditory comprehension deficits, the greater risk of decreased success in rehabilitation outcomes. So I always had a passion for exploring auditory comprehension and different potential treatments to facilitate comprehension with people with chronic aphasia. But Aimee Dietz gave me that opportunity to do that.

But it was interesting. During my dissertation process, I actually found out that my son had a pretty significant dyslexia. We kind of suspected it with him growing up, but then when you hit kindergarten, you really start to see the reading challenges kind of surface. And I remember talking with Amiee about reading. During that time, we were able to get my son connected to a great reading program that explored different compensatory supports to help facilitate any reading process, one of which was text to speech technology.

And at that time, Amiee was collaborating with Karen Hux from the University of Nebraska on a potential reading study. And she says, "You're so interested in reading right now and you're interested in aphasia? How about combining those two loves, and getting involved with a reading study?" And the rest is history, that kind of landslide into a lot of research collaborations over the past 12 years that I've been involved with. But my son Eric did inspire that because seeing his success with text to speech with dyslexia, it made me think, why not text to speech with people with aphasia? What about that dual modality presentation?

Ellen Bernstein-Ellis 14:15

That's great. I also think you're showing us yet again, how often our personal journeys inform our research and clinical paths. I think that's a beautiful example.

Reading has been repeatedly shown to impact quality of life for individuals with aphasia. They tell us that so often, but it's often challenging for clinicians to allocate the limited clinical time to assessment and treatment. Reading treatment takes a while to do so. I feel like I'm asking you to address the million dollar question here. But what are your recommendations on how to manage this challenge? And what are some of the challenges in assessing reading? I've alluded to the time, but why don't you elaborate? You've done a deep dive here.

Kelly Knollman-Porter 15:06

Absolutely. And it is challenging because first and foremost, I find that a lot of our standardized assessments will try to tap into assessing the reading challenges, but it really only scratches the surface. I haven't found a really great standardized assessment that I can use and rely on that really helps direct my treatment course,

You have to use a variety and you have to do some that you just make up on your own based on how exactly that person is responding. But generally, if I'm going to assess, I first have to start by having a really in-depth conversation with the person with aphasia or their care partner. First of all, you have to find out if reading is of interest to them, of course,and the types of reading materials that they like to engage with.

I think about people in our Miami University aphasia support group. I have one individual who would read a novel a week prior to her stroke. I had another person in our group who said to me, "Kelly, you know what? I never read books." It was not something of interest to him. You have to treat those two people very differently. You have to find out what their interests are. That's always where I start--with just an interview and talking with them about aphasia.

And then I talked to them about their interests in terms of "Are you comfortable with technology? Are you not comfortable with technology?" I actually give them reading tasks. When I assess reading, I of course, start at the word level, and then creep up to the sentence level and add more complexity and length. But when I give them a paragraph to read, I don't just look at, did they get the answers correct or incorrect? I'm not only looking at accuracy per response, but how long does it take them to process that multi sentence information? So for example, if I gave them a four sentence paragraph to read, I watch them very closely to see how they're attacking that reading task. And that doesn't take that long out of your assessment time. I watch where their eyes are moving. I watch to see if their eyes are regressing back within a sentence while they're reading.

And if I notice that they're really struggling, I also say to them, "Tell me, what are you having difficulty reading right now? Can you point to the words that you're struggling with? Can you point to the words potentially that you're skipping? Tell me about this process, and try to tell me how it's different from the way you read before."

And sometimes we underestimate what people with aphasia can tell us about their reading experiences. I have found that a lot of the people that I have worked with can be very specific about what they're having difficulty with. Now, there's always that small population that might not have the awareness. But it's still the majority of them that can.

I was just working with a gentleman last week, and I was like, "Show me what you're having difficulty with." And he pointed to the words that he struggled with, and that helped me understand. Are you having more difficulty with content words? Are you having more difficulty with verbs? Are you having more difficulty with articles? What is it about this process that's making it hard? Because many times people with aphasia can read that paragraph very slowly and very carefully and end up with a high percentage accuracy in terms of performance, but if it's taking them five minutes to read a four sentence paragraph, it is too fatiguing, it's too much. And they're going to end up avoiding getting back to reading things that they want to read for pleasure.

Ellen Bernstein-Ellis 19:18

Right, because the burden is too high.

Kelly Knollman-Porter 19:21

Because the burden is too high. I really feel like if we can look at these things clinically, we just need to take a little bit of time to talk to the people and actively watch how they're attacking that reading task.

Ellen Bernstein-Ellis 19:37

If I circle back briefly to the impact reading has on quality of life, your 2015 article does a beautiful job of describing the contribution of access to reading to the quality of life. This was a qualitative study that interviewed six individuals with aphasia to hone in on their individual reading preferences and supports. But before you describe these results, I'd like you to share with the listeners your reading assessment survey. You just talked about listening carefully and asking questions. I think that's harder than you're making it sound. But you've given us this tool that is an amazing springboard.

Many of us probably have just informal tools, lists of questions that we've developed on our own over time. But in that article, you actually attach this beautiful, clinical tool. How did you go about developing this initial reading survey that you do? Thank you for including that in the article. That was wonderful.

Kelly Knollman-Porter 20:46

Oh, absolutely. A special shout out again to my research team, Karen Hux, Sarah Wallace, and Jessica Brown. We spent many hours of our meeting time creating this questionnaire.

Ellen Bernstein-Ellis 21:02

But that's great, these great clinical minds all coming together, embracing this questionnaire, planning to put it together, that's beautiful.

Kelly Knollman-Porter 21:10

Absolutely. I have to encourage everybody to try to get to be a part of a research team. We're stronger together than we are in isolation. I have the utmost respect for each of these women. They have taught me so much. We each brought to the table unique strengths. All four of us are unique in our own special way. And like I said, I've learned so much from them.

But we bring that when we're creating our research studies. We always start with a rough draft. And then we question each other. We say, well, I've seen this clinically, or I think about this from a research perspective. I definitely brought to the table my clinical experience in working with people with aphasia, but then Sarah did also, so too Jessica, and so too Karen. Just working through what we saw were challenges that people with aphasia might experience and what we've found clinically to develop that questionnaire.

Ellen Bernstein-Ellis 22:11

So, you created this questionnaire with a variety of sections that helps someone systematically go through understanding that person's reading preferences and strengths and try to get a sense of what their profile is, right? That's your starting point. And then you take it from there.

Kelly Knollman-Porter 22:28

Exactly. What do you like to read? Do you like to read text messages? Do you like to read novels? Where do you like to read? How do you like to read? Do you like to hold a book versus do you like using technology? What are all the different ways that you personally like to read?

I can honestly say one thing that we learned from the qualitative study, I know I'm jumping to that, was everybody has their own unique reading experiences. There's not going to be a one size fits all approach to the assessment or the treatment of anyone with a reading challenge. You will not find a cookbook approach to this. You have to do it on an individual basis. And if you do, I think the outcomes are going to be stronger.

Ellen Bernstein-Ellis 23:20

Let's circle back to that 2015 article, we'll jump back and forth. Could you describe some of the key takeaways from that study? Maybe you could explain why you think that dual modality model, which we started to allude to earlier with text to speech, is so important to supporting reading success? That's part of my takeaway from that 2015 article.

Kelly Knollman-Porter 23:45

I wish I could tell you that in 2014, when we were initially planning this qualitative research study that we were thinking about TTS. I was from a distance, but we weren't actively looking at text to speech (TTS) at that time. But one thing that my colleagues and I felt we had to do first, if we were going to explore reading research more, we had to go to the people with aphasia to learn what they wanted. So, before we took our own personal opinions about what we thought people with aphasia needed in terms of reading, we thought we should start with a qualitative study and find out what they wanted and what they needed.

And you know what, that was such an important starting place for our research. Because again, we found each of the people that I interviewed had their own unique needs, but yet every single one of them passionately wanted to read. They wanted to get back to reading and they wanted to read books. They wanted to read books about romance and they wanted to read about horror stories. I'll never forget one of our participants. She told me that she liked to read Stephen King novels. She laughed and says, "Kelly, you couldn't handle that." And it's true. I don't like those scary stories. But, they wanted to read. They want to learn more about aphasia, but they just want to read what everybody else is reading.

Ellen Bernstein-Ellis 25:23

You want to read what your peers are reading. I will always remember this story where one of our book club members at the Aphasia Center of California was so excited at a book club meeting because he had taken the book that we were reading, I think it was Shadow Divers at the time, to the golf course. No one usually approached him and chatted with him. But he actually had a couple guys come up when they saw the book and engage with him in discussion. So it became this beautiful bridge of connection. I can't communicate as well, but they had this awesome commonality to share. It was just what they were interested in. So that example of just wanting to do what your peers are doing because there's such joy in being part of that reading community.

One of my favorite parts of that 2015 article is also the clinical reading framework that's on page 19. It helps a clinician start to think about how to implement reading supports and strategies. I think that is a beautiful contribution. Could you describe that model for our listeners?

Kelly Knollman-Porter 26:30

Sure, of course, you start with the questionnaire, you start with asking them what they want to read and what they like to read. And then you do an informal assessment. And then, as we walk through that framework, you establish personally relevant goals, based on their unique reading needs and experiences.

But then as you're considering treatment, you have to think about lots of different avenues that you can potentially go down. And that's going to be based again on their needs. Specifically, are they interested in technology? If they're not interested in technology, then that's going to take you on one route, but if they are interested in technology should you consider text to speech? If they're not interested in technology, will picture support facilitate their understanding of the written text? So basically, looking at personalizing the treatment approach. And going through a process of trial and error, looking at the length of the reading that should be used, or the complexity of the reading materials, and again, gearing treatment towards their unique personal needs. That's kind of what it's all about.

Ellen Bernstein-Ellis 27:50

You really provide a very clear framework, and I think that always helps us with our clinical thinking-- to know what questions to ask and how to break it down.

A wonderful follow up to that 2015 article, is the 2022 article that compared comprehension, processing time and modality preferences for individuals with and without aphasia when reading books using text to speech. Could you start by explaining or describing what motivated your work to be at the book level? So often, we start with words and then sentences, but here, you took this big, big leap and started at the book level.

Kelly Knollman-Porter 28:31

I'm going to swing back to my 2015 article real quick, if that's okay. Because I have to admit, one of the participants in that study gave us direction to go the TTS route first. So, of those people that we interviewed in that initial qualitative study, only one of them was reading more after his stroke than before his stroke. And this gentleman, he was in his mid 40s at the time, and very into technology. I remember when we were doing the interview with him, he was adamant. He was like, "Kelly, text to speech works!" So of the six people that we interviewed, he was the one that inspired us to start looking at text to speech more-- that eventually led to all these other studies.

Because he said, "I've read a novel." He laughingly told me that he read Fifty Shades of Grey, and he also was able to get online and, through text to speech, order things through Amazon or different mechanisms like that. We started exploring text to speech technology and the degree to which it could help from a dual modality presentation. So that kind of got us on that track.

My colleagues and I explored the use of text to speech at the sentence and paragraph level to see if it helped. We really had mixed results, I have to admit. We were finding that sometimes it helped some people, but it didn't help all people. And we were almost getting a little frustrated with what we were finding, and we were feeling that we were hearing from clients. I have to admit, I've run into clinicians all over the country and they're like, "Yeah, text to speech works." But we weren't seeing those strong outcomes with our research.

It was right around the pandemic time. I said to my colleagues, "We're gonna have to take a big leap here with our research, instead of just looking at the sentence and paragraph level, why don't we just jump to books?" We know that people with aphasia want to read books. We have a feeling that the text to speech might help them at the book level. We know that this research is going to get a little muddy, there's going to be a lot of variables that we can't control for, but let's try to do a study based on what people with aphasia want.

So we took this big leap of faith and did this book study. And this one was where we decided to control many factors in terms of having them read a certain section and then using text to speech and then read another section and then use text to speech for another section. There was a lot involved in it. But that's ultimately why--because people with aphasia told us that they want to read books.

Ellen Bernstein-Ellis 31:45

I know we're going back and forth. But these topics are all integrated. Let's take a moment and ask you to talk a little bit more about text to speech and what you've learned about using it for individuals with aphasia. You started to again allude to some of the things, particularly the variability across people. There are pros. And there's cons.

Before we dive in, I want to refer our listeners to this nugget, this beautiful little gem, that I found just last week. It was in the March 2023 ASHA Leader, and it's with your co authors Sarah Wallace and Karen Hux. The article lays out some of the considerations to take when introducing a client to text to speech technology, like how to do it in a systematic way, how to explore and allow for the individualization that is necessary, that practice is necessary. It's a great clinical perspective article. We'll put the link in our show notes. But what do you want to say about the lessons learned with text to speech?

Kelly Knollman-Porter 32:47

Absolutely. It takes practice when you're considering using text to speech with a person with aphasia. First of all, you have to see if they're interested in using technology. If they have access to technology, that's your first question. And then, can they access the device physically? So lots of things have to be taken into consideration.

If they show interest in using the technology, you need to sit down with that person with that technology that they choose. If that's an Android device, if that's Mac device, if it's a laptop, if it's an iPad, if it's a smartphone, you have to bring their device to the table and see to what degree they can access the necessary text to speech applications that are needed in order to use it successfully for reading tasks. If they cannot access it, then you need to take a step back and create an instruction manual to help with pictures and aphasia friendly formatting, in order to give them a step by step method to access that technology.

So often, we start to use technology intuitively. We think everybody else should be able to use it that easily. But we have to make sure that the person can turn the device on. A lot of older people also have decreased circulation in their fingertips and sometimes when touching the app, they can't get it to trigger, so they have to warm up their fingers before accessing it.

Ellen Bernstein-Ellis 34:33

I'm so glad you mentioned that because I can actually personally relate to that one. Because these nuances are so important. , I don't know if they're nuances, these challenges that you may not realize until you actually sit down and work with the person.

Kelly Knollman-Porter 34:48

Absolutely. So when I know someone is interested in this, I always start with pictures--a detailed instruction book that shows you step by step what you have to touch in order to access that TTS system. I put it in a binder with a plastic coat covering over the top, so that they can have that manual sitting right there by their device.

And then we practice with it. We say, "Okay, now I'm going to show you how to access this text to speech technology. Now you show me if you can do it using your manual." And we go back and forth. We're not even to the reading part yet. You have to first access the system.

If they show that they can then access it, then we actually get into playing with the different TTS features. So anything, from the speed of the voice presentation on TTS is crucial. You have to find that ideal speed for that person that's not too fast, and not too slow. That's going to help their processing. So, playing around with the speed.

Also playing around with a voice. Do they want a male voice? Do they want a female voice? Do they want one with an accent? You'd be surprised people are very particular about the voice that they want.

And then, also exploring the use of highlighting. Do they want to have highlighting? At the single word level? Do they want each word highlighted as it's read? Or do you want the full sentence highlighted? Or do you want no highlighting, because some people don't like the highlighting.

So there's a whole sequence of steps that you need to go through in order to determine if someone is going to be able to access the TTS system, and then, if they're going to be able to use it successfully. And that does take time. And it takes experimentation and setting up a system for a person, letting them try it on their own. And then having them come back and ask, "Okay, what did you like? And what did you not like? Can we change this at all?" So it can be adaptive, it might change over time. We don't want to just give one structured TTS system to all people. It won't work.

Ellen Bernstein-Ellis 37:17

I think that dovetails beautifully with my next question, which is, if we circle back to that 2022 article, I was struck by some of the variability across participants and that you were able to embrace that as a researcher and look at what that means. The variability across people reinforced your approach of taking a strength-based model approach when assessing reading performance for your clients. Are there other outcomes you want to highlight from that study?

Kelly Knollman-Porter 37:49

Absolutely. One thing we found overall, is that for the group as a whole, TTS technology helped them process the written materials faster, without compromising comprehension. I'm gonna say that again, so they could access and process the written information faster, without compromising comprehension. For some of them, that was huge, right? Because they were able to read that book with less time, and hence less fatigue--

Ellen Bernstein-Ellis 38:27

---that reduces that burden we were talking about earlier, right, that sense of fatigue and burden. However, so keep going. I'm sorry.

Kelly Knollman-Porter 38:34

So we found it helps process the information faster. But as a group overall, we found that it did not improve their comprehension. And that's been kind of the thorn in our heel, more like, why is this text to speech not facilitating comprehension? Because if you look at the theory on dual modality, if you're presenting something auditorily and through writing, that should facilitate comprehension, right? But we weren't seeing that with all participants.

Now, some of that could be the varying degrees of complexity of their unique type of reading problem that they had. Then we did have a couple people that actually did show improvements in comprehension. We had one participant that had a 20% increase in comprehension with TTS compared to the read only condition. We had another person with like a 10% increase. So this works for some people, in terms of facilitating comprehension, but not all. So we felt like we're getting close, but we're still not quite there. And that's why we're needing to continue to do more research.

Ellen Bernstein-Ellis 39:50

I just want to take a pause. This research was all done during COVID. I want to thank you for how clearly you describe the training and materials needed for this study in that article. I have watched some of my colleagues trying to do research during COVID. They did some incredible things. Looking at that article made me wonder how did you do that? I want to shout out your tenacity in accomplishing this during COVID. I think you mentioned that it gave you multiple "front porch opportunities" to solve tech challenges, because you had to go to the house of your participants, literally sit on the porch and try to fix the iPad, or the Kindle, or the whatever, and hand it back to them. So thank you for just hanging in there during a time when it was really hard to do research.

I'm looking at the time, and I want to make sure that we get to your eye fixation behaviors and processing time in individuals with and without aphasia article. I've just covered a lot at the moment. Was there something you wanted to reflect on in terms of your "porch moments" before we jumped to the eye fixation study?

Kelly Knollman-Porter 41:11

I think as a speech language pathologist, it's kind of in our blood that we have to be very adaptive and flexible. Sometimes you have to jump in the car and drive and sit on the porch, especially. This is another challenge with using technology, if an update happens, and it totally changes the formatting of an application you're using all the time. Now, if a person with aphasia cannot always adapt to that, I would get a call, "Hey, Kelly. Something's popping up here. And I can't get rid of it." So I would just hop in the car, and I'd say, put everything on your front porch. I will be there. I'm just going to sit on your front porch, and I will deal with the update.

Ellen Bernstein-Ellis 42:02

That could be cold in Ohio. I'm picturing you sitting there with gloves and in a coat trying to fix things.

Kelly Knollman-Porter 42:11

Yeah, that was about it. But that's our skill as speech language pathologists.

Ellen Bernstein-Ellis 42:17

You showed a lot of dedication. You keep giving a shout out to your team and your lab.

Kelly Knollman-Porter 42:24

I have a special shout out to Mackenzie Pruitt, who worked on that study. She was a masters level student, and she was right there in the trenches with me. I have a great team.

Ellen Bernstein-Ellis 42:35

I want to go back to this eye fixation behaviors study. While we're not likely to be able to assess eye fixation in daily practice because the equipment and technology is beyond what we would have in our clinics or private practices, but your results really hold clinical significance for understanding reading, processing strengths and challenges. Do you want to describe some of the highlights from that study?

Kelly Knollman-Porter 42:59

I think one of the biggest frustrations when you work with someone with reading challenges is you really are not 100% sure how they're processing the written text. We're assessing them, we're watching them, we're seeing their response to the questions. But what are you having difficulty with? You can ask questions, you can watch their eyes clinically. But one thing that eye tracking technology has that I'm grateful for is, it showed me how people with aphasia process written text.

And we wanted to specifically not just look at the word level, there's some great research out on word level processing and sentence level processing. But we wanted to take a big leap and look at multi sentence processing. So what are those eyes doing? What did they fixate on? What are they regressing to, and again, I'm going to give another shout out to Drew Bevelhimer. He was also a master's level student that was working in my lab at the time, who, again came alongside me to help get this eye tracking technology going.

This really did show me how unique the reading challenges that people with aphasia have when reading multi sentence information. We specifically looked at how often they had within word regressions, like within a longer word within sentence regression--so when their eyes look back to another word within the sentence, and then how often they look back to a previous sentence. And one thing that that really showed us is with the use of text to text to speech technology, their numbers of regressions significantly decreased. So they did not have to regress as much while reading, which again, resulted in a decrease in processing time.

Another thing that this study showed, which I and my colleagues thought was really interesting, we actually brought in a group of neurotypicals to do this study also. When we used the default text to speech voice rate, we actually found the opposite results with neurotypicals. When using text to speech, set at that default speed, like right around 150 to 180 words per minute, they actually had more regressions with text to speech than in the read only condition.

Ellen Bernstein-Ellis 45:39

So, you have to match the speed with the person. Is that where this is headed?

Kelly Knollman-Porter 45:43

That is exactly where that's headed. It really reinforced to us how you have to consider the speed of that text to speech voice. Because if you do not have the appropriate speed, it can actually have some detrimental effects in causing more regressions. That's one thing, looking to the future, that my colleagues and I are going start looking at-- exploring how to get that synching better in terms of the eye movements with the rate of speech.

Ellen Bernstein-Ellis 46:17

So is that is next in your research, where you're headed,

Kelly Knollman-Porter 46:21

That's where we're headed.,

Ellen Bernstein-Ellis 46:23

I'm going to look forward to that. I just want to say that your body of research on reading and reading comprehension, and supporting and using strategies and understanding the patterns and challenges that people with aphasia have and how they get them back in the game to support them. I just think it's such a valuable contribution. I really appreciate this beautiful body of research.

And there was another March 2023, ASHA Leader article, besides the one on text to speech, that describes how reading impacts return to work. It's an article that tells a story about your efforts to support a teacher who was working to return to the classroom. I'll put that link in the show notes too, because it's a beautiful collaborative, "we're going to do this as a team" story. And it wasn't easy. But it was very much supporting the individual goals and journey of your client.

Do you have any parting advice as we wrap up for clinicians who are going to assess and work with reading with their clients? That's what this whole show has been about. But what else do you want to add we end?

Kelly Knollman-Porter 47:36

Don't be afraid to explore reading. I know it seems intimidating and overwhelming, because it is challenging to figure out what's specifically the problem, but I can honestly say that if you invest some time in it, the outcomes are going to be worth it for your clients.

I look to some books studies that I've done here within our Miami University aphasia support group and, and I have many members that prior to the book club study that I did, had not picked up a novel for 15 years since their stroke, and through adaptive materials, and again, shout out to Roberta Elman's work in the Book Connection materials that her and her group have created. We've used them a lot here at Miami University. But through those adaptive materials that she's created, she's opened up a world of opportunity for people with aphasia to be able to access books. Giving people that opportunity to get back to reading materials that they'd like to read is just really rewarding.

Ellen Bernstein-Ellis 48:55

Thank you so, so much for this conversation and for all the work you're doing. And we'd like to close with one kind of broader, big picture question. Kelly, if you had to pick only one thing that we need to achieve urgently as a community of Life Participation providers, what would that one thing be?

Kelly Knollman-Porter 49:23

When we talked about this question, I was slightly discouraged because my ultimate reason for going and doing research was to provide research that will lead to greater reimbursement of services for people with chronic aphasia. I hate to say it, but here are 15 years later, that's still my big takeaway point. We need to find better ways of helping people with aphasia in the chronic phases get reimbursement for services that they so desperately need.

We also need to talk to clinicians across the country. We have to be very careful in terms of how we give services to this population. They can still make progress. They can still make gains. We just need the support in order to make that happen. I'm just going to throw one other thing out there. This pertains to the ASHA Leader 2023 article for the teacher that was trying to get back to work. We need to find more opportunities for people with aphasia to still have part-time jobs without losing their benefits, because they're caught between a rock and a hard place. If I go back to work a little bit, I'm going to lose my benefits. I remember in that article, Christine Bowles, who we interviewed, shared working full time is too hard, but I still have more to give. I still have more to give. I'm not done yet. I'm only in my 40s. Why can't we give people with aphasia more opportunity to work without losing benefits?

Ellen Bernstein-Ellis 51:09

Thank you for that message. I think it's critical and one that a lot of people face and think about. So thank you for bringing that up. And for participating today. It's been a wonderful opportunity to talk about your work. Your passion and excitement comes across so much.

And I'm going to thank our listeners for listening today. And I just want to remind that our references and resources mentioned in today's show, just see our show notes. They're available on the website, www dot aphasia access.org. And there you can also become a member of our organization and support the podcast and all the other great work that's being done by aphasia access, and you can also browse our growing library of materials and find out about the Aphasia Access Academy. And if you have an idea for a future podcast episode, email us at info at Aphasiaaccess.org. For Aphasia Access Conversations. I'm Ellen Bernstein-Ellis. And thanks again for your ongoing support aphasia access

References and Resources

The reading intake questionnaire discussed in this interview, is accessible here:

https://aphasiaacc.memberclicks.net/assets/docs/Reading%20History%20Questionnaire-Knollman-Porter-AphasiaAccessPodcast.pdf

To see examples of adapted book club materials mentioned in this episode, go to:

The Book Connection on the Aphasia Center of California website: https://aphasiacenter.net/the-book-connection/

Hux, K., Wallace, S. E., Brown, J. A., & Knollman-Porter, K. (2021). Perceptions of people with aphasia about supporting reading with text-to-speech technology: A convergent mixed methods study. Journal of communication disorders, 91, 106098.

Hux, K., Knollman-Porter, K., Brown, J., & Wallace, S. E. (2017). Comprehension of synthetic speech and digitized natural speech by adults with aphasia. Journal of Communication Disorders, 69, 15-26.

Knollman-Porter, K. (2023). Navigating a Job's Language Demands After a Stroke. Leader Live. The ASHA LEADER, 28(2), 42-46.

Knollman-Porter, K., Bevelhimer, A., Hux, K., Wallace, S. E., Hughes, M. R., & Brown, J. A. (2023). Eye Fixation Behaviors and Processing Time of People With Aphasia and Neurotypical Adults When Reading Narratives With and Without Text-to-Speech Support. Journal of Speech, Language, and Hearing Research, 66(1), 276-295.

Knollman-Porter, K., Brown, J., Hux, K., Wallace, S., & Crittenden A. (2022). Reading comprehension and processing time when people with aphasia use text-to-speech technology with personalized supports and features. American Journal of Speech-Language Pathology, 31, 342-358.

Knollman-Porter, K., Dietz, A., & Dahlem, K. (2018). Intensive auditory comprehension treatment for severe aphasia: A feasibility study. American Journal of Speech-Language Pathology, 27(3), 936-949.

Knollman-Porter, K., Hux, K., Wallace, S. E., Pruitt, M., Hughes, M. R., & Brown, J. A. (2022). Comprehension, Processing Time, and Modality Preferences When People With Aphasia and Neurotypical Healthy Adults Read Books: A Pilot Study. American Journal of Speech-Language Pathology, 31(6), 2569-2590.

Knollman-Porter, K., & Julian, S. K. (2019). Book club experiences, engagement, and reading support use by people with aphasia. American journal of speech-language pathology, 28(3), 1084-1098.

Knollman-Porter, K., Wallace, S. E., Brown, J. A., Hux, K., Hoagland, B. L., & Ruff, D. R. (2019). Effects of written, auditory, and combined modalities on comprehension by people with aphasia. American Journal of Speech-Language Pathology, 28(3), 1206-1221.

Knollman-Porter, K., Wallace, S. E., Hux, K., Brown, J., & Long, C. (2015). Reading experiences and use of supports by people with chronic aphasia. Aphasiology, 29(12), 1448-1472.

Wallace, S. E., Hux, K., Knollman-Porter, K., Patterson, B., & Brown, J. A. (2023). A Mixed-Methods Exploration of the Experience of People With Aphasia Using Text-to-Speech Technology to Support Virtual Book Club Participation. American Journal of Speech-Language Pathology, 1-24.

Wallace, S. E., Knollman-Porter, K., & Hux, K. (2023). How Text-to-Speech Aids Reading for People With Aphasia. Leader Live 28(2), 52-53.

Wallace, S. E., Hux, K., Knollman-Porter, K., Brown, J. A., Parisi, E., & Cain, R. (2022). Reading behaviors and text-to-speech technology perceptions of people with aphasia. Assistive Technology, 34(5), 599-610.

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:

1. LPAA is vital to understanding what the client wants and needs from you as a clinician
2. 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
3. While work and other community obligations may go on hold after aphasia, parenting doesn't go on hold
4. People with aphasia who are in the process of raising children benefit from peers who understand what they're going through
5. 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
6. 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
7. 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 group.

Lauren Schwabish: Yeah, well, I think the group is pretty new. So, we're sort of cultivating that I would say, one of the things, though, is, there's one woman shared that now that her kids this was back in, I think August, her kids had gone back to school, and she was like, I don't know what to do with my time. And another survivor basically sent me a list of ideas. She's like a support group Guru. She attends some in the Uk, some here. She really knew of a ton of resources, and she sent those to me to pass on to this other individual. So that's probably a great example of, you know, one person wanting to really cheer on the other one. There's that same woman who offered the resources is lives in the Chicago land area, and we had a one person who moved to that area was really fun. She ended up giving us a tour of her house on our in our group, which is really great. But that was a connection we made where we said, Hey, you know what? What are you know, the the strokes, survivor communities like in that area in Chicago. So that was really neat, too. So I think you know anytime I feel as a facilitator when I have a chance to match someone to either to peer to peer, or just for resources. In general. You know, one woman is like, I really wanna read. She has a 14-year-old, and she's just like there's a lot of reading that goes on with like middle school and high school and so we were just sort of like troubleshooting together, you know, on the side, just hey, you know, here's an audio book that we might want to try or here's something you could pair with an audio book. So, you know, it's it's just we have a space to share how you're feeling resources, I think, become evident when you're in that supportive environment.

Jerry Hoepner: Yeah, absolutely. I think those are perfect great examples of that connection between people and that resource and mentorship that they can provide to one another one another. I was kind of internally laughing when you you mentioned the middle schooler with reading, because I was thinking about when your children reach high school and college, and they begin to pass you up in terms of knowledge and intelligence. That's a hard time for any parent. Definitely for someone with aphasia or we're even talking about how to handle like cell phones and social media and technology. And like you think of how fast pace. That is, I can barely keep up. How does someone who has, you know, issues, maybe even with like sensory overload you know where there's video games going on and when you're really at that point, and you have to say something how do you find the words, you know? And so actually, one of our, you know, again, longer term survivors like, you know what? I just text my kids. And we have a couple of emojis where they know what I'm saying, you know. So I think it's really neat. And that way, too. It's just sharing those examples of like modern day parenting. And what does it look like when you have aphasia? Yeah, that's fantastic. One of the things I was going to ask you about is the kinds of topics that come up. But you've shared a few social media and how to support someone with reading and all of those topics. But what other kinds of topics typically come up in these groups.

Lauren Schwabish: I think for the parenting group, it's really about, how do you keep your language skills going? Because I think a lot of these folks are, you know, not necessarily continuing to receive skilled interventions from speech pathologists. And so some of it is. Just try to like, how do I use my environment? Or how do I have strategies to sort of resume participation? There was one woman early on in the group, so it was a smaller group and she was going to meetings with her High School senior about college and graduation. And so we were sort of just coming up with, like, what are some words that you'd wanna have ready, you know, application. And you know, tuition. And so even just kind of brainstorming a way to support her participation in that. So that was something that came up. A lot of it is sort of what are your kids excited about? And I think that that's one of the things I always close that group with is gratitude. Just because it's such a wonderful it's brain, healthy activity. And almost universally the parents are talking about their kids. They're grateful for their kids. They're grateful that they got to you know that their kid was well behaved at school, or they're grateful that they got to go on vacation, or they're grateful that they want to swim meet. So sometimes it's also a chance to brag, you know, to really shine a light on the things that your kid is doing. You know, that's a fun thing to be able to do. And again, in a fast-paced environment, you know, when they're with their neighbors, or they're with the kids at, you know, other parents at school things just go quickly. And so when it's a time to just slow down, and we'll just sort of popcorn it around the Zoom group. Where everyone has a chance to just share something that their kid is up to and that's been really neat to one of our members is from Canada in BC, and so we didn't really know, you know, geographically where he was. So I was. You know we were looking at the map, and we were figuring out where everyone else is from, too. So sometimes it is just it's about that community and some hot topics that are coming up. Weather was one of them where everyone was talking about you know the wildfires where he was, or how do you, parents when it's so hot out. You know, it's really typical struggles. It's just, in a way, it's probably not that different from a normal parenting conversation. We just use language support and give people tools. They need to be successful contributors to that conversation.

Jerry Hoepner: That's a pretty strong litmus test for being meaningful and person centered to be able to say, it's just the stuff that every parent talks about. Now, this is just a community that scaffolds that for people with aphasia, so that they are a part of those conversations and can be a part of those conversations I love that that's fantastic. Yeah, really wonderful. Well, knowing what you know now, and other, what other resources would you like to see available? To this community of individuals with aphasia from a parenting standpoint? Your wish list.

Lauren Schwabish: We talk about this, my wish list. So one of the things that I'm I'm trying to, you know. It's hard because we only meet once a month. I wish we could meet, you know, more routinely, but is, of course, when you have kids it's really hard to plan, you know and get together. But we've talked about this over. Several different meetings is, what would we like to have available? I think certainly books or resources videos that are for parenting, about parenting that are aphasia friendly. So like, how do you, parent? You know a toddler? I know, I read books when I was raising my kids. You know, I read books currently about like teenagers and mental health. You know what resources are available that are aphasia friendly. And where can we find those books and do those books exist? And can we write those books? So some of it is just typical parenting advice but made aphasia friendly. That's something I would love to see. And we have a couple of different books that people have recommended, and I think we said we could link those in the show notes so people could try to. You know, find those. But of course, this is probably one of those moments where someone will get inspired and create them, you know, create that resource in the future. I would like to have some tip sheets again, based on what my parents in with aphasia, have recommended about how to engage in conversation in the community when it comes to parenting. So, for example, how do you talk to the pediatrician during a checkup? Right? How do you make sure that your voice is heard, that you can fulfill that role of parents versus someone who's just sitting in the room when there's you know, someone else speaking? How do you talk to a teacher at a parent-teacher conference? So some of it I think it'd be again scripts or recommendations or advocacy. I have a like we've all seen them sort of. I have aphasia, you know, cards, and we I've shared that with that group just to try to say, like part of your job is to be a presence in the school community, right? So like, how do you do that? So even like a guide? Again aphasia, friendly, something that would allow them to participate in these pretty routine parenting situations. And then I think, what I'd really love, and I don't know, you know. I hope someone out there is thinking about. This, too, is to think about how to record stories or videos with just those words of support. So that if you're out there and you have a young parent with aphasia on your unit in a hospital where you could go to Youtube, or you could go somewhere and say, Hey, you know what? Here's words of wisdom from people who've been where you are. If I could record a snippet of the conversations that we have, or the words of wisdom that one parent passes on to another. It would be so. I think, reassuring in a really scary time I think it would be inspiring. You know nothing that's too heavy a lift that doesn't need to be, you know, a feature like film, but just something that would be a collection of stories that someone could watch and just gain a little bit of sense of, okay, you know I'm not alone and people have done this before me, and they got better. And I can, too.

Jerry Hoepner: Yeah, that seems to be a recurring theme that I'm not alone, and I can connect with people that really get this. Yeah. II love your wish list, and I hope that some of our listeners are inspired to create those resources. And you know, as we were talking, II just couldn't help myself. I jumped on to Google Scholar, and I wanted to see what was out there for research in this area. There's not a lot, and I know that Molly Manning has written a little bit about this, and I think Brooke Ryan has done a little bit of work recently, but there's not a ton out there. So for all of you academics out there, too. Like what a terrific topic! For someone to research into, to learn more about this. So I'd love to get those testimonials and words of parents out there as well. So feel like we're just scratching the surface of this, and a lot of work needs to be done. But what a great kind of call to action! That the need for groups for parents with aphasia. So I really love, love that conversation, and thank you. Anything else that we're missing, or we should add, before we move on. Regarding.

Lauren Schwabish: No, it's like, I said, running, the group has been wonderful. And I just think, if you even have 2 people, you know, it doesn't take like we have people from all over the country that come to the National Phase Association meeting once a month, you know, the second Wednesday of the month. But it doesn't take too much to operate it, you know, Zoom Link. And so I think even Matching, or you know, Peer matching someone else just to recognize that this is a very this is a population that's gonna live with aphasia for a long time, and you know they're the needs are high. And so even if you can think about a peer mentor, or some kind of connect in your greater community. You know, this is really a population that's thirsty for it, and they want it, and they will. They will pursue it on their own. Once you sort link them up together, and then hopefully, the rest of us can come up with some great resources to fulfill that. You know that that connection.

Jerry Hoepner: Yeah, excellent. And certainly, if there are people listening, thinking, what should I do? I want to do something related to parents. Wow! What an opportunity to step into! There's plenty of plenty of room for that support to go around. So really inspiring. Lauren, if it's okay, I'm gonna shift gears and talk about a very different conversation. But one that, we said, is definitely linked through that kind of family. Principle, family centered principle. And that's the conversation about person centered care for individuals with primary, progressive aphasia. Can you begin by just sharing a little bit about your perspective? What drives you, your underlying theories for this approach?

Lauren Schwabish: Yes, and I will say, for my, you know, 23 years of experience. I am very new in the Ppa space, mostly because I was working in the hospital system, and that's not where these individuals are found, you know. So for me. Once I started my practice, and someone said, Do you treat primary, progressive aphasia. The answer was, of course, yes, but then it was very much a well, how right? How do I do this? And so diving into you know, all sorts of education. Looking at, you know, resources that are available. I've really appreciated some of the work on the raise framework in terms of really not thinking so much about all of the testing, but really thinking about what does this individual need to do? And how can I identify as much personally meaningful stimuli as possible, because that's the only thing we should be focusing on, right? So I think to that end also, it really clarifies what my approaches and forces me to be as efficient as possible, and then really be flexible. There's one gentleman in particular I'm thinking about where, you know, we've started out, and he didn't really require too much in the way of language support. So it was more like, what do you want to talk about and maintaining, you know, a multimodal language, practice opportunities. And then, as things have gone on and change, we've really run the gamut from like starting, you know, starting with an iPad, and you know, a higher tech, aac option, and then kind of seeing that that's not really going very well, or it is a little too challenging for this particular family, and then very quickly pivoting to something that's more accessible. So yeah, it's to me. It is it is a family centered situation, and you know it's interesting.I have a wonderful aphasia center near me, and I love them, and I refer everyone to them. But they are very much clear that Ppa and sort of that aphasia community center feeling doesn't really work well in their experience. And so I brought this, you know, again to the aphasia access community to, you know, at the Leadership Summit, and said, You know, how does this work? And it's just really complicated. And what you'd said earlier about, you know a family being able to look ahead and say, okay, this is what I want. I have found in the Ppa clients that I've had. They actually avoid that because I think they don't want to see it. It's too much, they've said, you know. And so I tried to be a little bit of a matchmaker. I had 2 gentlemen, both with primary, progressive aphasia, you know, scientists very loving wives, you know, really like they were so ideally suited to connect and it was almost like they didn't want to see this other individual, even though it would have been wonderful for them to connect there. I just found and this is probably happened in, you know, 75% of the cases I've had so far, they are reluctant to see someone else with. Ppa.

Jerry Hoepner: yeah, interesting and I think that's one of those challenging things where we have to like your principle of matchmaking, and where we have to think about how we get there, right? Because there's always things that we don't want to talk about, or we want to avoid to some extent. But there's always a a bit of us who knows there's a need for that, too, and finding ways to make that threshold of building those bonds and those relationships is definitely a part of that even if it doesn't start out with. Hey, talk about what primary progressive aphasia looks like further down the road, but just to be able to build some of those peer connections?

Lauren Schwabish: and not know that, or know that you're not alone. I think that that idea that we talked about with families as well. So yeah. And what I found probably is a more successful avenue is really sustaining those family connections. So that's where I found that sometimes the community of course I want them to be able to see someone who's, you know, just as bright, who also has aphasia where things are changing. But what I found greater success in is looking to the sort of family as a community and saying, What can we really do in this contact, so that you can continue to, you know, ask your grandkids about, you know how school is going, or give advice to your you know newlywed son about you know life nowadays, you know. So, some of it is really trying to figure out how can I use those family connections? And then to me and anyone who knows Ppa knows it's so much about counseling. So really, being a provider of I would say hope and I think that that's one of the things that really is important is to say we can still have participation, meaningful life activities, even though things are getting to look a little different. And so the one family I'm thinking about. They have this beautiful vacation house on the bay in Ver. In Virginia, and you know they love to go on vacations like this is a family that lives a great life and they really feel that they have to kind of reel it in, because, oh, my gosh! You know Dad has aphasia, and you know what if? What if? What if? And my perspective is? No, we need to make sure he's still going on vacation. And here's a communication tool, so that you know we can do that safely. Or here's how we're gonna navigate his communication in that situation so that he can participate. And that's probably been a great source of creativity. And also kind of success. Is the family as community?

Jerry Hoepner: Yeah, absolutely involving those family members and allowing them to make those connections, as it, you know, as if they're comfortable. And that principle of hope cannot be overstated right? Just how important that is to keep people engaged, because as soon as you start thinking about the downside that's when you want to just withdraw and kind of close in on yourself. But that hope is the light that people need to see in that moment. So completely agree. From your perspective, why is this person centered approach so crucial for a person with primary, progressive aphasia and their family.

Lauren Schwabish: I think, as we see sort of the deterioration that comes. you know there's so many there's so much value. And really looking at who you're you know who you are. Who is this individual? And so, being able to remain connected to things. They are passionate about friendships they've had forever. You know things that really get them excited. I have a gentleman who is like a he was a food researcher, a food scientist, and he actually absolutely loved being in this professor role. And you know, all of a sudden. He's his family is, you know, very attentive, and they're, you know, bustling around and doing all these things for him, and he just lights up when he gets an opportunity to explain a scientific concept or look at a scientific journal, or attend a conference like we encouraged him to go, and he attended a conference, and we practice the names of the researchers he was going to meet. And you know questions he might be able to ask and I think so much of it is. You know we're looking at someone who's essentially fading away, and that's so scary. And so if I can say, who are you? You know what's important about you? What should I know? What should your family maintain? And then we build a communication support system around that I think it allows them to continue to see the individual, even though there's a neurodegenerative process. And so things like I had one client who wrote his own obituary, and in doing that he gathered all of his. You know he was he had a lengthy Cv. He had done all this wonderful work, and so it was a chance for him, and it was of his own request he wanted to do this and I just said, Let's go because it was a chance for him to relive his professional connections. It was a chance for him. Talk about you know, areas of study where he had contributed. So to me, it's really about preserving the identity and recognizing and being able to have a again a tangible communication book, memory book, whatever they want to call it. Practice words. You know, stimuli photos. Anything that really says this is who I am And so that remains a touchstone where families can say, you know, even if the level of support changes over time, we still can have that person and be that person.

Jerry Hoepner: Yeah, II think that's just another one of those grounding principles. I I'm not making fun of you. When I say this, you've said who I am or who you are multiple times. And and that focus on identity is so crucial. And I think another piece I've been really into reading work on personhood, and that idea that yep, this person is fading. Their cognitive and language abilities are changing but they're still intelligent human being inside. There's still someone who deserves your time and attention, and still has many of the thoughts and kind of knowledge of their life. I think really important for families, and anyone who interacts with them to just recognize that personhood and and that identity of who they are.

Lauren Schwabish: it's also so easy to see what's going wrong or what could go wrong, that I think, also maintaining someone's competency and finding ways to reveal competency to families is so important. So like my one of my clients is much better at writing than he is at initiating verbal language, and so for him we haven't texting people right? And they are sort of like rolling their eyes like he's got his phone out again. And I'm like, yeah, cause that's how he's gonna communicate with you. And he will text me pictures and videos from family gatherings. And you know, it's really become a tool that shows his competence. And so you know, that's another opportunity. And why skilled intervention is so important even in the scheme of neurodegenerative disease is because there's always something that we can do to show that person and show what they're able to do. We just have to think of the way to do it.

Jerry Hoepner: Yeah, absolutely. I love that. You came to Aura Kagan's principles of acknowledging and revealing competence in a time when someone is like you said, fading and and losing some abilities even more important that we hold onto those principles. So I'm really interested. What does that look like in a session? What do your sessions? How do they look?

Lauren Schwabish: Yeah, it's every session looks a little bit different. Some of it is. I just want them to introduce themselves to me. And that's usually what I'll say is, you know I'm new to you. What can you show me? What can you tell me? And what can I look around in your environment. And I'm so fortunate in the private practice I've constructed is I'm a mobile therapist. And so I get to go to people's homes. And you know, even just being in that space can tell you so much and so you know, trying to really invite opportunities. Knowing how to ask the right questions. You know a lot of those carefully constructed open ended questions and then trying strategies here and there to see what really helps support someone's language. So I have one gentleman who he's he loves cricket and you know there's really no cricket on when I'm at his house but he and I have discovered over working together that having written notes as I'm listening to him, and I'm capturing, you know, content words and keywords he's able to say I write them down, and then he and I kind of have them on the table in front of us And so with cricket, He wanted to tell me. I said, I've you know I've played it like long ago. I really don't ever get to see it. What can you tell me? What can you show me? And then giving him a a vehicle to do? That drawing was a perfect way for him to show. You know, and this is a gentleman who's no longer writing. He's actually not really using any texting, or, you know, ipad, he has all of these devices. Unfortunately, not a lot of them are. Does he really feel comfortable if he could engage with them? But again, it's about what he would like to do. But a pen and paper was so effective and so with that, as he's drawing the sort of circles, and and you know the the lie out of the pitch of cricket. He's suddenly writing numbers, you know, and then he's able to point to those numbers and express those to me. So that's one version. One of the things that I talked about at the aphasia access summit and was really fun is looking at photos on the phone. So another gentleman the one with the big family, and he's always taking pictures. And so what we had discovered was this captioning strategy where I could just swipe up with him, and because his writing is a strength, he's then able to put in the names or events of family members into the photos. And that's been really fun. So that we're really trying to find that strategy where he can continue to use the stronger modality in the context of ample stimuli, because this guy takes pictures of everything. And then, as he's sort of declined a lot of it is trying to meet the needs of the family, so making sure that they know what communication supports are. Some of it's just thinking about safety, too. You know, making sure that right off the bat, this person has some sort of identifier on them. For stuff that's starting to get lost. How do we use technology, you know. Air tags and tiles and all those cool things. How do we maintain his independence and community? And that's been tricky lately is, you know, providing education resources related to driving. And how do we know when it's time to stop driving? You know these are sort of things where I have become just a trusted advisor to the family. And so, if I have a resource, I think that's important that we recognize our roles look so different in these sessions. And that's okay, because what we're doing is we're providing again, person center care trying to highlight what their priorities are and support the family. So that they can make that happen too.

Jerry Hoepner: Absolutely. Since the aphasia access summit that swiping up for the captions is something that I do quite a bit lot of my people. So I really appreciate that. I'm glad you brought that up again. Yeah, I feel like this has really brought us full circle, and with that emphasis on the family and the person as the core. Really. I mean family identity, and what that individual wants and needs to do what drives them. Seems to be at the core of these approaches, and that definitely aligns with what aphasia access and the life participation approach is trying to accomplish. So thank you for your insights and and creative ideas about this anything that we missed in terms of the discussion about primary, progressive aphasia or parenting.

Lauren Schwabish: I will just say that as someone who's sort of like done this by my gut instinct. It's so wonderful when I can go to the research. Not so much for the parenting is like you said, there's you know I it's not a ton of ample of evidence body of evidence yet, but it is so reassuring to have access to meaningful research that really supports You know just an Lpa approach it as a clinician like boots on the ground. I've really valued that I've loved podcasts and resources. I've had access to in terms of counseling. I think validating that counseling is important. I'm grateful to the fact that you know we even payers like Medicare. You know that there's a space now for the role of a skilled speech pathologist to follow along and to perform therapy over the course of a neuro, degenerative condition. You know, I feel like sometimes I've heard. Oh, you know, I think I'm guilty of this when I was working in the hospital setting, and someone would come in with some sort of acute process but then there would be dementia. I really feel like I was like well, they can't learn, or you know they I was so dismissive of someone's capacity. And I have changed completely in terms of being able to say, you know what there's individuals I work with, whether it's Ppa or another dementia process. Just to be able to say there's always value in finding a communication system or communication tool to really allow that person to connect with whomever they want to and so I think the fact is that I'm in a community that, you know is is interested in that. I have a practice that is, you know, working well because of that I'm able to get paid by payers because of that. So I really think it's important for people to recognize that. We can fulfill such a valuable role and there's actually wonderful resources out there that will justify this approach.

Jerry Hoepner: Totally agree. Yeah, there's always value in fostering participation. Whether that's going to help someone recover, or whether that's gonna help them. You know, in their in their decline gracefully, and to remain engaged as long as they can so totally agree. Well, thank you, Lauren, this has been a fantastic conversation. I know our listeners are gonna value your clinical insights. So thank you. And it's been really nice talking with you.

Lauren Schwabish: Oh, it's been a joy. Thank you so much.

Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.

Interviewer info

Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.

In this episode, Lyssa Rome interviews Kate Meredith about using concepts from family and systemic psychotherapy to help people with aphasia and their families.

Guest info

Kate Meredith is a Family and Systemic Psychotherapist, working for the NHS and in independent practice in South Wales. She is completing a Professional Doctorate in Systemic Practice.

Kate worked for 15 years as a Speech and Language Therapist, working with adults with acquired communication difficulties. Kate's dual training enables her to support families and individuals with the impact of these changes on family and social relationships. Kate has studied at University College London, King's College London and the University of Bedfordshire. Kate worked with Giles Yeates to publish Psychotherapy and Aphasia: Interventions for Emotional Wellbeing and Relationships (Meredith, Kate. H. and Yeates, Giles. N. 2020). Kate also presented at the American Speech-Language-Hearing Association International Convention in November 2022.

Listener Take-aways

In today's episode you will:

• Describe the importance of narrative for helping families cope with aphasia.
• Understand how speech-language pathologists can use genograms and ecomaps to support their LPAA care.
• Learn why the way speech therapists talk about aphasia matters.

Edited show notes

Lyssa Rome

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication impairments in my LPAA-focused private practice. I'm also a member of the Aphasia access podcast working group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's host for an episode that will feature Kate Meredith. Kate is a family and systemic psychotherapist, working for the NHS and in independent practice in South Wales. She is completing a professional doctorate in systemic practice.

Kate was a Speech and Language Therapist for 15 years, working with adults with acquired communication difficulties. Her dual training enables her to support families and individuals with the impact of these changes on family and social relationships. Kate has studied at University College London, King's College London, and the University of Bedfordshire. Kate worked with Giles Yeates to publish Psychotherapy and Aphasia: Interventions for Emotional Wellbeing and Relationships. Kate also presented at the ASHA convention in November 2022.

Kate Meredith, welcome to the podcast. I'm so glad to be talking with you.

Kate Meredith

Thank you for having me. I'm really glad to be here.

Lyssa Rome

So to start with, I'm curious about your transition from speech language pathology, or speech language therapy, into family therapy. What led you to make that change?

Kate Meredith

So I loved working as a speech language therapist or a speech language pathologist, as you would say in the US. It was great. I mainly worked in a rehabilitation setting, and what that enabled me to see, from the off, was the changes to people's relationships. On a daily basis, I was witnessing people coming into the center, trying to figure out who they were in relationship to each other, and that got me really, really curious. The more I thought about it, the more I thought about the ask that we put on partners and family members in those settings—so whether it's supporting people with toileting or washing, feeding or swallowing, there's so much change that takes place.

And it really made me think: What about the relationships? Are we asking about the change in relationships? Are we asking what it feels like for partners to have different roles, to have different aspects to the way they do their relationships? And as a speech language therapist, I was thinking: Okay, what does this person need in terms of their communication skills, what do they need on the ward? Do they need to be able to indicate whether they're hungry or thirsty or in pain? And all of that was important. But it also kept me thinking: What would matter most to me? If I were in this situation, if I had aphasia, if I was having difficulties with my communication, what would be the biggest impact for me? And it just kept coming back to relationships for me.

Now, I worked in the multidisciplinary team, with neuropsychologists and physios and OTs, nurses, healthcare support workers, doctors—great, great teams. But I wasn't sure that any of us really felt like we had the remit or the focus to think about people's relationships after brain injury.

When I was working in the community for a while, I started working with a neuropsychologist, who started asking questions about this with a couple that I was working with alongside him. And I said to him afterwards, "I loved those questions. I'm so glad you're asking those questions. I think about this all the time." And he said, "Well, I wasn't doing neuropsychology there, I was doing family therapy." So I started looking into it. And when I started exploring it, and when I got onto the course, straightaway, I thought, I think that speech and language therapists, speech language pathologists have got a really unique set of skills here that matches so well with the skills that are needed in family and systemic psychotherapy.

So starting the training, loved the training straightaway. And I always hoped that I'd be able to do something and brain injury with it, but then, when I found a job in family therapy, in a different context, actually, working with children, adolescents in mental health services, I kind of started down that direction, and love it. But I've really held on in my private practice, where I'm not working as a speech language therapist anymore. But most of my private practice work is with adults who have a communication disorder. And I find that so enriching. I just love it. And I also do a little bit of writing a little bit of presenting. And that's kind of where I got to here.

Lyssa Rome

It sounds like you very organically saw this connection between what families, people with acquired brain injuries and acquired communication disorders were dealing with, and how family and systemic therapy might be able to help them live better with their conditions. So I want to back up for a moment and ask you to define for us what is family and systemic therapy for, say, SLPs, who aren't familiar with that term?

Kate Meredith

Absolutely, because I wasn't either. I think it's more popular in certain contexts of healthcare than in others. So in the UK, it just wasn't in brain injury anywhere. So I'd never heard of it. There are different names for family and systemic psychotherapy—so some people call it systemic psychotherapy, some people call it family therapy, sometimes it's a mixture, which doesn't really help with the difficulties that people have in understanding what it is. But really what it is, is about helping people who are in relationships with each other, work together to achieve change. The idea being that change happens through relationships, rather than individuals just making a change that can that can affect everything.

The big principle of it is really that problems aren't located in people. Problems and people are not the same thing. People don't just have ownership or become the problem, they very often happen between people. So who takes responsibility for that change, if actually, the problem is happening between two people, or more than two people?

So family and systemic psychotherapy thinks about actually how relationships can support people, and how improving relationships can reduce problems and can reduce symptoms. So we're trying to provide a really safe space in family therapy and systemic psychotherapy, where people can communicate, they can make efforts to understand each other in a different way. We can think about strengths—it's very, very strengths based—but also about what the needs are, what the emotions are, and how people can be a resource for each other. So rather than thinking, you need to go and get this fixed, or you need this medication, it's actually: What can happen in the relationships that will bring about the change?

Lyssa Rome

That brings to mind a really interesting conversation that I was able to have, as part of this podcast, several episodes ago, with Dr. Marie-Christine Hallé, who really emphasized this idea that aphasia is a family thing, it's not something that just happens to the person with aphasia, and what you're describing, this idea of locating the problem, sort of outside of the person with with the brain injury and situating it within the family context, I think, is a really powerful way to think about it.

So you've been bringing these ideas from family therapy to speech language therapists, speech language pathologists, working with people with communication disorders. And today, our plan is to talk some more about some of these concepts from family or systemic therapy that can be useful for SLPs, who are working, particularly within the Life Participation Approach to Aphasia. So can you say a little bit more about what you've been doing to bring these ideas to SLPs?

Kate Meredith

Yeah, absolutely. So for me, this is this is really exciting. What I really want to help people understand, I guess, a lot of people do already, but actually, if relationships are what matters to the person, we're working with, then that's everyone's business. You know, we don't need to think of it as being something that we don't have the right to ask about. So of course, you can always train as a family and systemic psychotherapist. But as a speech and language pathologist, there are also many other things that you can do to support people's relationships after brain injury and with aphasia. And the feedback that I get from clients I work with now, from clients I've worked with in the past, is that it's really helpful to have someone who understands neurology, who understands aphasia and what can support communication alongside the permission in those sessions to make the relationships the focus. So this is really important for people, really meaningful for people. So what I guess I'm trying to do is get that message out there—make this your business, because we've got the skills.

Lyssa Rome

I first became aware of your work with your presentation at ASHA in November 2022, and you talked about ways that speech therapists could make it our work. Specifically, you talked about—one of the things you talked about—was narrative therapy, and the power of stories to help people make sense of their situation and to shape their reality. We've touched on this earlier, but part of that had to do with this idea of externalizing the communication disorder, in this case, the aphasia. So I wondered if you could go into that a little bit more for us.

Kate Meredith

Absolutely. It's one of my favorite approaches. So I'd be delighted to talk more about it. So narrative therapy is based in a kind of philosophy of social constructionism, which I won't go into too much here. But essentially, it's kind of an epistemology, or a way of understanding knowledge that underpins the doctorate I'm doing. And it really kind of lends itself to thinking about truth as being a product of social processes, rather than there being one objective truth. So that gets a bit philosophical.

But essentially, what we're thinking about here is that when we are in conversation with each other, which is largely language-based, our conversations support the beliefs that we have and our views of the world. And these events that we are in conversation talking about, they are subjectively perceived. And we link those together into stories that make sense to us. But they're rarely the whole story.

Those of us who have the power to tell these stories, to talk about events and the way that we see them, those of us that have got the loudest voices, the most power, we get to shape the stories that get told and retold. And that, in social constructionist terms, means that we get to shape truth, and we get to shape reality and how it's shared in our communities, which is a privilege that not everyone has.

When we when we do this we see, in narrative therapy we believe, that the stories that fit get retold. They become very dominant. They become the dominant narratives in our societies and in our communities. And the stories that don't fit with that dominant narrative get lost. We would call those subjugated narratives. Now, when I was learning about this in my first year of training in systemic psychotherapy, I just had this epiphany, this kind of light bulb moment of, what does this mean for the people I've just left on the ward and have aphasia, and in the most literal sense, don't have a voice. It just really kind of lit off so many sparks in my brain.

So really thinking about the place of power in this and and how people with aphasia don't get a chance to input into certain stories. I think that we can all probably think about stories that have been told about us in the past that don't really fit for us very well—it might be that we're a rubbish driver, it might be that we're really scatty or that we're selfish or that we're cranky in the morning. You know, there's lots of stories that we don't particularly like that might get told about us. And can we challenge those? Can we give an alternative version and say, well actually is not quite the whole truth and do remember this time? And actually that happened once or twice, but I have been driving for I don't know 30 years or whatever it is. If we can challenge those, then we get to kind of address that narrative and have an influence over it. But if we can't challenge those narratives about us, then we feel less well. We feel subjugated by that.

So I really started to think: Well, what are the options that are available to somebody with aphasia to tell the stories that fit for them? And how as speech and language pathologists do we support them to develop a rich narrative that fits more, that is more congruent with who they are and how they see themselves? So narrative therapy is all about this. Narrative therapy has got a series of kind of parts to it. Essentially, the first thing we're doing is hearing the problem and whatever form people can communicate that to us. We're listening, we're validating, and we need to stay with that. We need to stay with that part of the process before moving on. And when we're doing that, we're thinking about the language that people are using, the way that they're expressing it, because these things are really important later on.

The externalization part of that is about separating the problem out from the person. So the problem and the person are not the same thing. That is absolutely essential as a belief in narrative therapy. And there's some parts of healthcare where that works really well already—that's established. So if we think about cancer care, we don't call people "cancerous." But yet we call people "aphasic." So what happens to somebody's identity when they are called "aphasic"? It sounds like, to me that's kind of becoming quite a big part of who they are. And so it's about tending to the language we're using, when we're talking about an aspect of a person or an aspect of an illness that they have had, that then affects their communication with others, rather than making them the problem.

So I want to know: How can we make this routine in brain injury services and aphasia services? How can we talk about, "Oh, yeah, the aphasia—the aphasia happens between the two of you." "The aphasia gets in the way when you two are trying to communicate." "The aphasia makes it difficult for us to understand you and your needs, and what matters to you," rather than, "Your aphasia" or "You as an aphasic." You know, I know that language is moving on and, and I'm sure that that people are adjusting to making changes with this already. But I think it's really, really important that we think about how can we really relocate that problem from being something that is within the person to something that is cropping up between people.

Lyssa Rome

I think that's such a powerful idea. And after I heard you speak at ASHA, I started paying more attention to the way I was talking about aphasia, and where aphasia would get in the way, or how aphasia impacted, say, someone's ability to write a grocery list or to communicate with a child. There's something I think quite powerful about the ability to name it as separate from the person. It's different than I think, what I sometimes hear, which is people sort of blaming themselves for the communication breakdown or for the difficulty. So sometimes you'll hear people say, under their breath, like, "Oh, I'm so stupid," or that sort of thing. And I think that when we say, "Ugh, aphasia is really getting in the way here, right?" That's, that's a little bit of a different message for people to hear, or maybe for people to tell themselves.

Kate Meredith

Yeah, it really thinks, to me, it speaks to me about who takes responsibility for that and who takes responsibility for the change. And if somebody is already experiencing this in every part of their lives, do we also make them responsible for owning it and, and managing it, and making amends for it. Yeah, that's a lot to put on someone.

Lyssa Rome

So what are some ideas for how SLPs might use these narrative techniques to give them, or people that they're working with, a sense of having influence over aphasia? What kind of questions can we ask people with aphasia and their significant others?

Kate Meredith

So this part of it, I find this really fun work. Okay, so what we're doing here is we're essentially giving aphasia a character. And we're doing that through making the person that we're talking with, the person who has the brain injury, the expert. Their expertise really gets raised here, because they're the one that understands it the best. So we're working with them to say, "Okay, let's understand more about this aphasia." We could call it aphasia, or you might give it a different name. Now, the names can get a little bit profane.

Essentially, what would people call this thing that is coming along and disrupting their lives? What name do they want to give it? What does it look like to them? Do they have a vision of it? What does it sound like? Does it sound like noise and static? Does it have a color? Does it feel like it's this kind of black thing kind of approaching them? Is it big? Is it small? Does it have a shape? And what does it say? Does it say those things that you hear people saying, "Oh, I'm so stupid?" "Oh, I should have got that right." "Oh, this is…?" Does it put words into people's minds? "You're stupid, you can't manage this situation. If I was you, I wouldn't even go out today, because you're not going to succeed at anything."

There might be things that it's saying to the people that we're working with that get into their narratives. So can we be curious, first of all? "Tell me more about this—what that looks like, what it sounds like, what it says to you, and how can I understand that better?" And we might be doing that most effectively in a session with one or two of their family members there as well. So they can really listen in and think, "Okay, I've got my experience of it. And this is their experience of it. And wow, I'm understanding this in a really different way now."

So then we can start to think about the influence of the problem on people and on relationships. So what does it do? How does it get in the way? How does it disrupt? Does it provoke frustration? Does it provoke anger? Does it make you feel isolated? Lonely? Does it provoke other people to engage in behavior that you find really patronizing? So can we understand what does it do that really affects your life and your relationships?

Then we can start to think about its presence. So when is it most present in your relationships? What helps it to successfully disrupt your communication together with the people that you care about? So it might be, "First thing in the morning, when I'm really tired, it's everywhere. And I can't do anything without it tripping me up." Or, "It's okay in this situation. But actually, in these situations, when someone's trying to rush me, and I've got a queue of people behind me, then it's just there, shouting in my ear, saying, 'I told you, you couldn't be in this situation, you may as well go home.'" So really thinking about where are the contexts where it's most present, most visible, most disruptive?

Now, an interesting part of this process is finding out whether or not aphasia might also have some benefits to it. Because the problems we have in our lives often do have some useful side effects. Not always, but it's worth being curious about that. So if aphasia had any benefits to it, what would they be? And some examples of that might be "I can just not worry about my emails anymore. You know, emails were always really stressful to me. And now, you know, my partner's told everybody, look, don't email them, speak to them on the phone. And that's great, because actually, that used to be something that really used to stress me out." So it's worth kind of just exploring, kind of with a bit of playfulness. Is there anything good about this? Does it do anything useful for you?

The important part or another important part of this process, is looking at what we call the relative influence. So by this stage, we've understood a lot more about what the problem does to people what the problem does to relationships. But actually, the relative influence is what influence we as people have on the life of the problem. So here, we're not just thinking—this is crucial—we're not just thinking about the person with the aphasia, but actually, everybody around them. How can everybody influence aphasia? So when is at least present? We've heard a bit about when it's most present, but when is it least present? When is it hardly even noticeable? And this is often to do with people having stepped up.

So what happens to aphasia when John writes down key words for Millie? Does aphasia get a bit smaller? Does it get a little bit less troublesome? What happens when Angela puts her phone down to look at her dad and talk to her dad? Does aphasia find that something that it doesn't like quite so much because it can't quite have its own way? What happens when David gives Phil time to finish rather than interjecting? So are these things that start to reduce the power that aphasia has to disrupt?

When we're doing this, we're looking for other people to think about their agency over aphasia. So it doesn't feel like a massively oppressive problem in all circumstances and in all contexts. But we're thinking about the unique outcomes that can be threaded together. So actually, most of the time, it's awful, but when that happened the other day that it didn't really feel like it was around, or it felt a lot smaller. Okay, so let's start to thread this together. And let's start to think about other stories that we can tell that are healthier. And through that, we identify the actions that people can take, the tools that they have to reduce the power of aphasia. But again, crucially, not just the person with aphasia, the person with aphasia and everyone else. So we can think about how power is produced when everyone learns aphasia's ways, and uses their tools as a collective, as an army, as an uprising, to fight the power of aphasia.

Now, we have speech language therapists, speech language pathologists, have got so many tools, with working with families working with conversation partners, to really say, "These are your weapons against it. These are the things that you guys are already doing. But if you can do that more, if you can do that in that context, and that context, if you can do that here in the aphasia center, and at home and in the shop, then actually aphasia is going to start to think, 'Okay, I don't really have much of a place here. I'm not so welcome here.'" And it's going to get less powerful. And we can draw attention to that. We can thread it together. So it's not, "Okay, you know, John's aphasic. And he can't really communicate with anyone." It's "Aphasia tries to get in the way of John and his family and John and his friends. But this is a really skilled group of people on guard for that. And they are equipped with so many skills and tools, working as a team to make sure that aphasia does not disrupt their relationships." And that's enormously empowering for people.

Lyssa Rome

Yeah, it's a big shift. What you're describing makes me think about how people in relationship are dealing with aphasia, and how the reciprocity of communication, and that back and forth, might promote resilience with aphasia. And I'm wondering how we as SLPs can help people foster that resilience.

Kate Meredith

So resilience is such an interesting concept when we think about it in any walk of life. And there's so much different research into it. And I was looking into this a lot when I did my family therapy training, my dissertation was really around kind of partner coping when their partner has a communication disorder. So what helps people to cope and what helps people in relationships to feel resilient? And the reading I was doing at the time showed me that interpersonal relationships really influence resilience.

There was a paper by Roland, which was saying that actually, couples who can communicate openly, directly, and sensitively can better cope with chronic disorders. So what does this mean for groups of people that we work with in speech and language therapy and pathology, where open, direct, sensitive, reciprocal communication is less possible? And this is really where SLPs come in with their skill set. Because we need to understand, I believe, how people are managing. I think we need to start having those conversations—what's going on with renegotiation around the boundaries in this family around where the illness has its impact, about how they find a balance in their relationships that suddenly might be really skewed from where it was beforehand. In family therapy, we're really curious about people's understanding of each other's needs, of their strengths, and of their different perspectives on it.

So I guess when we're thinking about open and reciprocal communication, we can have ideas about supported communication. But we can also have a think about actually, what is it like to, to slow it down and to really be thinking, what are our different perspectives on this issue? How do we have a session that is supported by an SLP—somebody that's just taking it slowly and saying, "What is this like for both of you? How do you feel you're managing with this? What are your different ideas about this?" We can be there, supporting the person with the aphasia, to share their perspective, to share their worries. And it's the quality of that that can really, really lead to people feeling that we are open with each other.

It's not about the ease of the quick communication, necessarily, of: "What we're going to have for dinner tonight? And can you phone so-and-so?" It's about: "How we both feeling about this? How are we going to support each other? There's this idea about, you know, me helping you with personal care. What does that feel like for you? Does that feel okay for you? Would you rather someone else did it, so we protect our relationship in a different way? How can I understand your perspective? And how can you understand my perspective?" For me, that's the quality of that communication, that we can really have a part in making more sensitive, making more open, which I think can directly feed into people's resilience.

There are other ways that we can think about resilience, which is about the protective factors that they have as part of them or in their environment or in their relationship. And we can do a little bit of work around that—"What is it that that you do to help you manage at this time?" So then might be emotion-oriented coping mechanisms. Some of those can be healthy, some of those can be unhealthy. So we might be thinking about faith, we might be thinking about denial. There's problem-oriented coping mechanisms, where people might think about giving up work to help manage the kind of care package of their partner. But obviously, that can have its implications with social isolation and financial resources. There's problem-solving coping mechanisms where people might seek social support, or take on different roles that were previously held by the person with a brain injury.

But we need to, I think, be curious about this. What are you doing that's helping you through this time? What ideas do you have about the future and how you guys are going to manage? Because we know that sometimes people can do things with the best intentions. So partners have been found in the past to isolate themselves from social networks to avoid placing their partner into difficult or embarrassing situations. And we might be curious about that and thinking: Okay, yeah, we can see what the intentions are there. And that sounds like you're really holding them in mind. What will that do to you and your resilience, if actually, your social network kind of closes down?

So there aren't necessarily the right answers. And that's another kind of value, I guess, in family and systemic psychotherapy. We're not necessarily there to give the answers. We're there to ask the questions. We're there to be curious. Because generally, our belief is that people come up with their best solutions that fit them, that fit their context. But what we might do is ask the questions that help them to feel: Here's somebody interested in this, here's somebody that can help me to work this through with my partner, by being there, supporting the communication. And that can be a really valuable extension of our role that people might find more meaningful than maybe other things that we do.

Lyssa Rome

So it sounds like you're describing resilience as also something that's sort of based in and fostered by relationships. One of the ideas that really stood out to me in the presentation you did at ASHA was about how speech therapists could use diagrams and maps of relationships and systems to help them understand the context that aphasia exists in, right, the people who are dealing with aphasia, and so I'm wondering if you could tell us a little bit more about using diagramming within our practice?

Kate Meredith

Absolutely, I think this is one of those quick wins that SLPs can kind of start to implement kind of really, really quickly if they're so inclined. So genograms and ecomaps are two tools that I started using really, really quickly when I was training as a family therapist, but still working as a speech and language therapist. And they're slightly different. But essentially what they do is kind of map out the context for communication, map out the context for relationships.

So genograms we tend to think of—they're better known as family trees. So you might have seen these in other books and other contexts. But essentially, we use normally circles for women and squares for men and different shapes for people that don't identify as either. And we kind of map it out according to at least three generations. So you have symbols for each member of the family, and lines to connect them in their different family groups and generations. And what we do there is we map out the structure of the family. So we understand who's in the family and, and where do they live and how often do you see them. But also we can start to think about the quality of relationships. So in systemic psychotherapy, we draw lines between relationships. So you might have two or three lines between the people that are really, really close. And then you might have some squiggly lines between the relationships where there's conflict.

So it helps us to understand, okay, where are where are the people that we're working with in the context of their family relationships? Which relationships are going well? We can also put significant dates on there, separations, illness is really useful to put on there—physical illness, mental illness. How well is this family doing at the moment? What is this new injury, or this kind of developing illness mean to this family? And if we're thinking about their conversation partner as being kind of their key support, potentially their partner, actually what else is going on in their family, because most of us have got something going on in our family. I think I fell into the trap very often as a speech language therapist, thinking: Oh, I bet this wife will be delighted when I say, "By the way, I can stay late tonight, if you want to come in, and we'll do a conversation session with you and your husband." Without thinking: I wonder what else this woman has on in her life and how this will fit for her?

So it helps us to understand a little bit more about what's going on for that family at this point in time and how this fits. It also helps us to understand if we ask questions, things about the family scripts, the things that get handed down the generations. "We are a family who grin and bear it and get on with life and don't grumble." Or, "We're a family where bad things always happen to us. And this was always going to happen." What are the stories that we tell about ourselves as a family? This can be really informative for us as therapists to be thinking: Is this to them feeling like another example of that? Or actually, are they ready to challenge that family script? Or do they have a really positive family script? "We're survivors, we find ways to make stuff work." "No matter what happens, we're going to stick together." It's really interesting to ask people about the stories that get told about their family and, and what gets handed down in a really positive way. And what gets handed down in a way that doesn't feel okay, and maybe it's time to think about doing something differently.

So those genograms kind of map out the significant relationships within the family, which can be really helpful for us as speech language therapists to think about. Okay, who are the key communication partners here, and what is the meaning of the illness or the meaning of the aphasia for this family? So that's kind of one way of doing it.

There's another way of doing it, which sometimes, I'd almost recommend starting with, because maybe it fits better for a lot of people in the way they live their lives these days, where it's less centered on the family and the different generations, and more about our social networks. And I'm not necessarily talking about online social networks here, I'm talking about wider social networks. So the tool that I'm thinking about here are called ecomaps. And what we do with ecomaps is we draw a bit of a map of the family and their social systems and their professional systems. And we do that by drawing a circle in the middle with the person we're working with, and their immediate family, or household in that circle. And then around them, we draw more circles. And that can be as many as is relevant—a circle for each system that they are engaged with. So it might be the two partners, if it's two partners, each their work context. If there's kids, it might be their school. There might be adult friends. There might be kids' friends. There might be sports teams, book clubs, neighbors, other family groups. We can start to think, okay, all of these people interact with this family on a weekly basis or monthly basis.

And we can put ourselves on there. Now coming into this, there's a rehab team, or a speech language pathologist or a psychologist or social worker. We can start to kind of put ourselves on there as well. And we can have bigger and smaller circles related to kind of how present those systems are in the family's life. I think what can be really interesting is looking at how much space we take up in somebody's life sometimes, particularly in the acute stages or early on in rehab. Actually, work might have shrunk down to a tiny, tiny circle, whereas it used to be something that somebody did 40 hours a week. And actually now we take up 40 hours a week if they're on an inpatient ward, or even more. Things get really skewed. We become really big in people's lives and that might be quite complicated for people.

But what we can do is start use the lines that I talked about earlier in genograms—the straight lines for closeness the squiggly lines for conflict, again, between that that group in the middle and the different systems around them. What's going well here? What is really shrinking down but we don't want it to? We want that to be bigger, that meant something to us, and at the moment, it doesn't have any space because all these other systems are involved. Where is it that actually, we can say, "Okay, right now, yes, having all the support from the speech language pathologist is really great. We want that. But what would it look like in a year's time?"

Doing these over time can be really important. If you had three of them, you might do an ecomap the year before the brain injury. What did family life look like? Who were the connections? Who were the networks? Right now what does it look like? And if we were to think in two years', or three years' or five years' time, what would you like it to look like? Because that helps us to think about: Which are the systems that we really need to support this family to communicate with? And what would that communication goal be? What would be meaningful for that person? So if it's, "I really love my book club, they're a brilliant group of people, I want to stay engaged with them." Okay. What does that mean for our communication goals together? How can we really make that important and prominent?

So we can really set goals that are based very much on what will help this person to keep their network—that again, like you said before, feeding into those ideas of relational resilience. And meaning that actually, that social isolation, the people can really experience with aphasia, with people adjusting to aphasia and caregiving, we can say, actually, there are ways to keep these networks going if we think really carefully and really intentionally around what communication goals are needed for us to work on, but also how can we explain to these different systems about aphasia and its sneaky ways? And how can we help them to feel just as skilled in outwitting it and outsmarting it, as the family are hopefully beginning to feel?

Lyssa Rome

So as we begin to wrap up, I'm wondering what what would you like speech language pathologists who are listening to this to take away from what you've been sharing with us?

Kate Meredith

I imagine that many speech language therapists listening to this will already have a load of these ideas. So I hope that they feel empowered to keep thinking this way, keep using these ideas. I, for my own practice, like to think: Okay, what would matter the most to me? If I was to have a stroke, if I was to have aphasia, what would matter the most to me? And I think that can be a helpful way to think.

So my thinking is that actually, communication builds relationships, communication sustains relationships, and my relationships are the most important things to me in the world. But what if no one that I was working with in our health system was talking about the significance of aphasia in my relationships? I'd feel stuck. I'd feel like I didn't have anywhere to express that. So I would love speech language therapists would be thinking, I'm gonna ask, "How's this affecting your relationship? How are you doing with that? Who should we be bringing in? How can we understand that?"

So curiosity underpins everything that family and systemic psychotherapists do. So be curious and be broad with your curiosity. Don't feel like there are limits that you've got to stick to. Feel free to ask, "So what's this doing to your relationship with your partner? How's that working for you? What are you worried about?" Because actually, when we can help people to say it, it feels more manageable. So I'd love people to think about that.

I'd really encourage people to think about the concept of timeframes. So what were things like before? How are things now? Where are we going to? What to what place do they want to get to? Because actually, if we don't ask what things were like beforehand, we might never know that actually, they were just about to divorce. And then this happened, and now they feel stuck together. So, you know, ask, "How was your relationship before the stroke?" A lot of people will be doing this already. I don't want to patronize anyone. But I do want people to feel permitted—not that I'm here to give permission—but encouragement to ask these questions. So can we find out who the key conversation partners are, because that really makes us think about the key communication goals more broadly than our immediate context that we see them in.

I'd also really like to think about change happening in relationships rather than change happening within the individual. So a great shooter I had recently said, you know, when people are traumatized, don't make them responsible, alone, for change. This is Robert Van Hennik. And I love this idea: Is it fair for us, in healthcare, in society, to say, "You, there, with aphasia, you need to change your communication so other people find it easier to to understand you." How can we help families and societies and communities to understand the relational responsibility for aphasia and for managing aphasia?

I also would really like people to have a think about the problem. So the way we talk about the problem gives the problem meaning. So what are the stories that we hear and we tell? And how can we help people with aphasia and their families and their networks to challenge the dominant stories that actually might not fit for them. Actually, there's a really lovely possibility there for joint working. There's short training courses. And there's already a lot of kind of writing out there in systemic theory and practice and more writing coming through about the links with aphasia.

Finally, I guess what I would say is a speech language pathologists, people listening to this, they're already uniquely skilled. And I don't think people understand how good they are at noticing and supporting communication. And that's what builds relationships. We're so proactive in reducing communication barriers, and we've got the opportunity, through our work with people, to really, really find out what matters to people, and help people, help relatives learn new ways of communicating. So don't underestimate everything that you have to offer, in expanding that to relationships, and the quality of relationships to do work that is more and more meaningful for the people that we work with.

Lyssa Rome

Kate Meredith, thank you so much for talking with us. These ideas, I think are both very practical, and then also very empowering to think that as SLPs we can really think broadly and with curiosity about how we are supporting people and families as they deal with aphasia. So, thank you so much for talking with us today.

Kate Meredith

It's been a real pleasure. I'm delighted to have been able to have this conversation with you.

Lyssa Rome

And thanks also to our listeners. For the references and resources that were mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out more about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.

References and Resources

www.merediththerapies.com

[email protected]

Headway https://www.headway.org.uk

Stroke Association https://www.stroke.org.uk

Aphasia Access Conversations Episode #97: Aphasia Is A Family Thing with Marie-Christine Hallé

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong and I'm a member of the Aphasia Access Podcast Working Group. I'm also a faculty member at Central Michigan University where I lead the Strong Story Lab. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Sabine Corsten. We'll be talking about her work which focuses on supporting people with aphasia in reconstructing their narrative identity.

Before we get into the conversation, let me first tell you a bit about our guest.

Dr. Corsten, Professor of Therapy and Rehabilitation Sciences (Speech Therapy), employed at the Catholic University of Applied Sciences, Mainz, Germany, has focused her research on participatory and quality of life-oriented interventions for aphasia and in old age. Her research explores how identity changes after having aphasia. She has led the development of the biographical narrative approach 'narraktiv' in Germany. She is currently involved in the development of digital solutions to support peer biography work and social networking in aphasia and in old age. The app, BaSeTaLK, to support biography work in senior citizen facilities to improve quality of life and communication was awarded the Digital Health Award by Novartis. She has presented her work at international conferences and has published internationally. Dr. Corsten has been a visiting researcher at the Centre of Research Excellence in Aphasia Recovery and Rehabilitation at La Trobe University in Melbourne and at the University of Queensland in Brisbane.

In this episode you will:

• Learn about how identity and narrative are connected to quality of life.
• Hear about the development of the Biographic Narrative Approach.
• Learn about how an app, BaSeTaLK, was used for older adults in nursing home populations to improve their quality of life.
• Hear about how parking lot conversation in Philadelphia led to an international working group on narrative identity and that that group's vision is to train students and clinicians in gaining competence in narrative identity work.

Katie Strong: Welcome. I can't tell you how excited I am to have this conversation with you today.

Sabine Corsten: Yes, thank you for the invitation. I feel really honored to be invited. So yeah, I'm really excited too and I'm looking forward to our discussion today.

Katie Strong: Fantastic. As we get started, could you tell our listeners exactly what is meant by 'narrative identity'? And why this is so important for our work with people who have chronic communication disabilities such as aphasia?

Sabine Corsten: Thank you for this first question because I really think it's important to have a clear concept of identity and narrative identity to understand the biographic narrative approach and similar approaches like your approach about storytelling. And also, I think narrative identity is kind of a key objective in improving quality of life, so it's really necessary to understand it. When we started our work, we looked at sociocultural theories and we found that identity is constantly transformed through, for example, social interaction with other people. So, this means identity is renegotiated in dialogue with others. Therefore, you need narrative competencies, which means the competencies to talk about oneself and intersubjective exchange. So, I think these social interactions are necessary to interpret and integrate important life events in your life story.

Important life events can be very positive things like a wedding, but also negative things like having a serious illness. And so, these processes to interpret and integrate these life events are crucial for optimal identity development and for psychological well-being. This means these kinds of life stories or life narratives facilitate the process of understanding what happens to you and your life, and they help you to make sense of these crucial or critical life events like a stroke, for example. By this, the sense of identity can be restored, or you can find a renewed meaning to life. And now, you can have this bridge to quality of life, because quality of life seems to depend on meaningfulness and optimal identity development gives this meaningfulness to your life. So, this is very closely connected.

Maybe to sum it up, identity development or identity work can be seen as an ongoing process that forms a connection between the past, the present, and the future, and also between different roles you have in life as somebody in a professional role or in a family role. It also connects different life areas. And this narrative character of identity means the medium to do this narration is telling about yourself so that you can connect these different times in your life and areas. And also, I think this is really important, it gives you a feeling of coherence so that you recognize yourself as the same person over time, despite changes in your life and your roles. So, you have the impression of continuity and the feeling of agency that you are able to make decisions and to act.

That was a long explanation about identity. Now looking at aphasia as a chronic communication disability and as a really critical life event, especially asked for this identity work. However, the really necessary competencies, the narrative competencies are limited. So, the intensity and the length of the conversations are limited. And you can say, yeah, aphasia is a biographical disruption, so it disrupts everyday life routines, disrupts aims and perspectives. But it also disrupts the possibility to cope. So, because of the language difficulties, and I mean, you know her better, but I think it's so impressive how Barbara Shadden equated aphasia to 'identity theft', because people can't use language for these necessary coping processes. And so, people with aphasia often describe themselves as more deficit oriented. You can see, for example, about 60% of people with aphasia suffer from signs of depression one year after having a stroke. We also know that improvement in language skills does not mean there is the same improvement in quality of life. This was the starting point for our work.

Katie Strong: Thanks Sabine. Yeah, so it really is important. The stories that we tell others and the stories that we tell ourselves about ourselves have a significant impact on our quality of life. Well, I'm just so curious if you could share about how you became interested in this work?

Sabine Corsten: That's a very good question. I mean, you know a bit about it, and it was really an exciting journey because of when I started working with people with aphasia. When I started my professional career, my work was really about classical language-based therapy, so it was symptom-oriented, and we were looking at functional themes. For example, my Ph.D. was about phonological therapy and aphasia. And that was really changed when I started working in Mainz as a professor. So, we had this discussion at home about how language is connected with thinking. So, the connection between language and thinking and people with language difficulties. How can they work on their self-image because this essential to language is missing or limited?

From a sociological point of view, the question came up, "what does this mean for the experience of oneself?" And to be honest, I had no answer. And I was expected to be the expert, so I thought, "I have to look this up," because this is a really new path. And thinking, "what does it really mean to have this language difficulties apart from word finding difficulties and symptoms I knew about?"

I was not sure if there was something in the literature, but then I found the articles from Barbara Shadden and I had to look up this work. But I know now that this was the initial spark for me, because then I really thought, okay, there's already somebody who wants to understand what it means for people with aphasia to work on their identity and what it means for their further life and coping processes. And, so yeah, this was the starting point. And my work was always about conceptualizing intervention, so I thought, "okay, I want to understand how identity processes can take place when you have suffered from aphasia." But I also want to support the process because it seems that there is a deficit. So, I already had in my mind that I wanted to think about a kind of therapy method or approach.

Katie Strong: I think that's where our commonalities lie. You know, I've been a fan of your work since I was a doctoral student working on my dissertation, which was also in narrative methods to support people with aphasia. I would love for our listeners to hear a little bit about the behind the scenes of how you developed the biographic narrative approach and the philosophy behind it.

Sabine Corsten: When I found the work of Barbara Shadden, I thought, "okay, there is a starting point for our work." So, this was when I learned more about the idea of narrative identity and about the idea of, "okay, we want to support people with aphasia to work on their narrative identity." And in the beginning, it seemed a bit crazy because we wanted to use the thing that is really difficult for them, language to support identity-building processes. So, maybe it's important to mention that during that time, I also met Linda Worrall and Miranda Rose for the first time. They also supported us and said "no, go on. This seems to be a really good starting point," and, "maybe a bit more about the philosophy is."

The philosophy of biographic narrative work is not really that we found something totally new. What we wanted to do is to support this kind of exchange with other people and to support live storytelling, and people with aphasia despite the language difficulties. I think this is one very important thing. And other characteristics of the philosophy that we thought, "okay, it's not about language improvement, it's more about giving them the tools to tell their story." So, using multimodal support as written language, or using photos of pictograms. So, all the stuff we already know from traditional speech and language therapy, but really using it to have a deep conversation about their life stories.

As a third point, people with aphasia can use their life story as a kind of resource pool so that they could discover, for example, strategies that they used in their former life to overcome challenges. And so that they start thinking, "okay, we can use these strategies again," and really people told us about that. For example, they realized, "I was always very good at math, so I can do my financial stuff again on my own, I don't need help from my carers." Another really important point about the narrative approach is that it's really not directive, it's non-directive. So, it's not about, "oh, you're telling me you like to meet other people, then it's a good idea to use or to visit a support group." No, it's really about finding the solution by themselves. We just listen and try to understand what people tell us, but it's not about giving them a direction.

Another very important point is that it has, in my opinion, a preventive character. So, it's not a kind of psychotherapy and it's not about working on depression. It's really about preventing depression or working with people with mild symptoms. I think these are really very important characteristics of the approach, and you asked about how we developed it. So, we work in an interdisciplinary team consisting of, of course, speech and language pathologists, but we also had an adult educator on our team to learn more about the theory behind narrative identity. And we also got advice from psychologists and sociologists, really to learn more about these other disciplines. So, this, I think, is what is behind the approach. Maybe, should I also tell you a bit about how it works?

Katie Strong: Please. Yes, please do!

Sabine Corsten: And I forgot, apart from the professional workers who were part of the team, we also asked people with aphasia, for example, about the language we use in the approach. So, to learn more about easy language, or, for example, to select topics that were really important for them and what they want to talk about.

The approach itself consists of individual and group sessions, five individual and seven group sessions, in the evaluated version, and the sessions took place over ten weeks in our study. For the individual sessions, we mainly based them on a kind of unstructured interview format, it's called the 'narraktiv' interview or the narrative interview. So, this should really give people with aphasia the chance to tell about their life story. For example, we started these sessions by asking them, "tell us about your life, you can tell anything you want. We won't interrupt you, and you can just talk about what you really think is important to you." So, they were not forced, for example, to tell their stroke story. And there were also people who started with very different things, for example, with the death of their mother or things like that.

The first three sessions were about this unstructured interview form, and then we had two more individual sessions which were a bit more guided about relevant biographic narrative, relevant topics, for example, family, or health, their professional career perspectives for the future, things like that. And we also used these last two individual sessions a bit to prepare the people with aphasia for the group sessions.

And during the seven group sessions, we had a speech and language therapist and educator who kind of moderated the conversations. So, they really worked as a kind of communication broker by just supporting the conversation, introducing people to the topic, and asking questions so that everybody was able to take part in the conversation. And we also decided to include people with really severe deficits in speech production, so people with severe apraxia of speech. And again, we offered them to use pictograms and written language. We also had some worksheets, for example, we had something like a card and people could write down, "so, this is me" in the middle, and then they could put people around themselves. So, "these (people) are my family. These (people) are my best friends," to show how close they are to the individual persons. And after ten weeks, we stopped the intervention, and we had a conversation after three months to listen to the people and to hear how they felt after taking part in the intervention.

Katie Strong: Thank you. So, I do have a question. I guess in the group sessions, were they sharing things that they had prepared in their individual sessions? Is that what was happening?

Sabine Corsten: Yeah, exactly. For example, they had talking about their families as a topic in the individual sessions. And then they brought, for example, pictures from their family to the group session and introduced the members of their family to the other group members. Yeah, they shared the information that they discussed in the individual sessions.

Katie Strong: Fantastic, thanks for clarifying that. Since that initial project, you've been taking this storytelling approach in directions with different stakeholders, and also incorporating technology, specifically with nursing home residents and an app called BaSeTaLK. Could you tell us a little bit more about all of this?

Sabine Corsten: Yeah, I mean, really, the core of all of this is the biographic narrative approach. And we really started using this and other settings and with other target groups. And BaSeTaLK, again, an acronym, it's about using it with another target group. So, we decided to work with really old people, residents living at nursing homes, and the idea was to strengthen resources in the late stage of life. And I think you can compare getting old and especially moving into an institution to having a stroke because it's also a very critical life event.

You can see that people living in nursing homes really experience a kind of loss of connections and meaningful relationships, which means they also have high rates of depression. I think it's really up to twice as high as people living at home, so they are really in danger of getting a really serious psychological illness. And also, the rates for dying are higher there, so we thought it's another situation where people need support in communication to have the chance to talk about themselves. And again, it's our task to find this kind of preventive solution. It's also not new in working with older people, for example, there is already biographic work or reminiscent work. It's kind of quality characteristic of modern nursing and care for elderly people. But we found that it is mostly used for people with dementia, so then the aim is to facilitate the memory, really, it's not about identity work. So, it's really mostly offered for people with dementia.

And another point is, at least in Germany, this kind of reminiscent work is not systematically used in nursing homes because we have this shortage of staff, and this really limits the use. So, we thought that it might be a solution to work with volunteers and older people because we know from the literature that if volunteers and residents are similar, for example, in age, then it's easier for them to collaborate. And so, we thought that we would work with volunteers, and they could go into the nursing homes and have these life storytelling conversations with the residents. And we found in the literature that, for example, in palliative care, this kind of biography work is already done successfully by volunteers.

But it's also recommended to use technical devices, for example, specific apps to support the volunteers. And this was the moment when we thought, "okay, let's do this and try to develop an app like BaSeTaLK so that volunteers can use it as a kind of moderation guide and to stimulate these narrations in nursing homes." The app, BaSeTaLK itself, is kind of about virtual journeys. Let's say it like that. So, it offers the opportunity to go on virtual life journeys and you can visit different virtual places. For example, people can choose to talk during one session about a river or theater. So, it's not just a river or mountains or things like that, you can also go to casual places. And we had a long discussion about if we wanted to conceptualize the app around these locations, because in the beginning I thought that it was much better to have these biography important topics like family, health, and all the things I already knew. But we developed the app together in an interactive process with residents and possible volunteers. They told us that many old people don't want to talk about their family, for example, their partners may be dead or their relationship with their children might not be so good. They might also be a bit more open, so people can talk about their family, but they don't have to. And so, we decided, "okay, let's have these places," for example, we have a place with a garden that has stimulating questions like, "what did you observe growing during your life?" And then people can decide if they want to stay with the plants and talk about plants, or if they think, "oh, I saw my family growing, and I want to talk about my grandchildren," they can talk about that. So, the questions are quite metaphorical. You can stay close to the question, or you can give a broader answer. So, this was the idea when we chose to work with these locations. And then the app has a kind of stimulating feature by always asking these kinds of questions, but also having pictures of plants when you look at the garden or of nice places in the scenery. So, people can talk about what they associate with the picture and they can answer the questions. There's also always a kind of specific feature at each location. For example, when you visit the sea, there's the sound of the sea, or you can listen to a podcast or you can listen to music, things like that. The app can be used in one-on-one sessions to stimulate conversations about the life story, but it can also be used in group sessions to facilitate group conversation. I'm not sure, I think this gives the first impression of how the app might work.

Katie Strong: Absolutely. No, I think you've given us a great visual of how it can work. I guess one question that I know that's going to come up, Sabine, is "Can anyone access the app?" Or "How do we how do we get access to it?'

Sabine Corsten: Yeah, this question really comes up each time we talk about the app, and I think it's a very good question. And, yeah, I would really like to say yes, everybody can use it, because we really had very positive feedback from the users. So, we evaluated in a bigger study including fourteen residents in the target group, I think, and we also had a control group with more than ten people. And the data really showed that there was an improvement in quality of life and quantitative data. But I think it was more impressive that people told us, "yeah, we really started thinking about our lives." For example, one older woman taking part in the intervention, I think she was 94 years old, she said, "so this intervention was a turning point in my life. So now I look at my past and much more positive way." And I mean, she was a really old woman, and she took part in twelve sessions.

In total, we have 15 locations in the app, but we only work for three months with our residents. I think this tells so much about what happens when you take part in such biographic narrative interventions. And I mean, we really work with people with maximum mild cognitive deficits, so it was really for older people with almost no cognitive deficits.

Now to your question, after this long answer, we published the app as open-source code, but I had to learn that it doesn't mean that it's an app shop or that you can immediately use it. It means everybody can work with this code, so other coders, IT people, tech people can start changing the code or working with the code, but companies can also do that. We don't have the funding to really go on with the app or to operate it on a regular basis. So, we are looking for bigger institutions, for example, institutions working with a lot of nursing homes in Germany so that they can operate the app. We are also discussing going on with the app with the colleagues from La Trobe with Miranda Rose. So, we already translated all the language stuff from the app so that it can be used, for example, in Australia. And there's the idea that it can also be used when you work with people with aphasia because it really has easy language with hardly any barriers. It's easy to use and the interface is very simple. So, at the moment, we think it might also be a good idea to train people with aphasia to use it as a kind of peer leader in support groups, for example. So, we try to find that kind of money to go on with the app and we also try to transfer to other targets.

Katie Strong: Important work and we certainly hope that the funding comes your way. I love that it can be applied to a variety of populations. You've talked a little bit about the coding but tell us more about what it was like to develop the BaSeTaLK app, and who was part of your team. All of that good stuff.

Sabine Corsten: It was a really new experience for me because it was my first tech project. And we started this tech journey before the pandemic so we didn't know that would become so important for people in the nursing homes. And, as I already mentioned, we started the development or process in a so-called user-centered process. So, this means all the possible users were involved in the whole process, to really old people living in nursing homes, to older people who might work as volunteers. So really from the starting point, we started working with them in focus group meetings. And these focus groups were led by two of our research workers, two speech and language pathologists, and also our tech guy who programmed the app was part of the focus groups. And they met on a regular basis. So, in the beginning, we started looking at recommendations in the literature and requirements. And then we presented this to our focus group members, and they commented on it, or they were also able to use some prototypes we developed. And so, this we presented it to them, and they would give new recommendations to us, or they talked about their requirements.

Katie Strong: I think it's so thoughtful and so important that we bring in stakeholders so early in a product development like this, you know.

Sabine Corsten: Yeah, we really learned about, for example, the selection of the topics. So, they told us not to offer topics like family or health, because this is so difficult for so many old people. So, start with other topics, maybe easier topics, and then you can create variety in the depths of the conversations by using different kinds of questions. So, this really came from the groups, it was not in our minds. I think this was really important to learn a bit more about that and also about the interface. I mean, now I say, "yeah, we work with a simple interface," but this means really simple. So, because of all the things that we already know about the menu, and all these things are very difficult for people. I mean, we are talking about people 80 years and older. And I think you really have to ask them because otherwise, they can't use the product. What might be interesting is that we had to do this all during the pandemic, so it was difficult for the groups to meet. For example, we ended up clarifying some things, or some topics, by phone calls. So, it was not possible to meet all the people in the group together. This was one of the challenges.

I think it's really interesting, we have a Ph.D. project using interviews with the members of the focus groups after being part of this focus group work and phone calls and all of this stuff. And I think this is interesting because we are all still able to show that this participatory work or process was really a very good experience for the members of the group. So, we found some indications for personal growth and personal empowerment. So, they were talking about how they have found or developed some new competencies. And I think this was also interesting that even the people who were just part of the focus group meetings benefited.

Katie Strong: Yeah, right. It's all about meaningful work, right? Having purpose and doing meaningful things. I love that. Well, I'd like to shift gears a bit and share with our listeners about how we met at the International Aphasia Rehabilitation Conference (IARC) in Philadelphia, in the Hilton parking lot of all places to meet. And we ended up having this beautiful parking lot conversation with you, me, Sarah Northcott, Rhianne Brinkman, and Bianca Spelter. It was kind of the start of this international working group that we have for narrative identity. You've been the leader for this group, and I was just curious if you could share a bit about what we've been up to and a few of the goals of our working group.

Sabine Corsten: I mean, I already told you that I'm really not sure if I am the leader, but I really like being a part of the group or a member of the group. And, yeah, I really wanted to get to know you and also about Barbara Shadden to be honest, because I admired this work. And so, when I came to Philadelphia and saw you on the presenters list, I thought, "okay, I want to get to know her, and I want to get to know, of course, Barbara." And then, I think it was really nice to get to know all of the other people you mentioned already. And I think it's so great that we have this group, and that we meet on a regular basis, since last summer. So, for me, I think it's really a very specific opportunity to learn more about the storytelling approach, about the theoretical background, and also to meet people who really believe in the same thing. This inspires a lot in me, I think, so that I think, "yeah, we are on the right way because we are together." So I think, but you can correct me, one of the goals of our group is to have an exchange about our work and about the things that are important to us, looking at our professional work.

Another thing, and I think this is something I like very much, is to develop joint projects to have or to come to results, for example. And I think one really interesting path is to think of how to support storytelling, for example, in the acute or post-acute phase of aphasia. And I think we talked about this in the beginning and then we thought about other projects. And I mean, at the moment, I don't know what you think, but I think it's great that it has already started. So, we are already working on a joint project, and this was about introducing students and speech and language pathologist clinicians to the narrative approach, and especially to the approach you use, the life storytelling approach. And maybe combined a bit with the 'narraktiv' approach, to work on the training together, to train and inspire other clinicians, and to facilitate them using the approach. And I mean, in the Netherlands, Rhianne Brinkman already started with a few students to do this course. And, yeah, I'm really curious about what she will find. And I think it's about giving the students or the clinicians more information about the theoretical background, but also giving them the opportunity to make their own experiences and to try the approach with people with aphasia.

Katie Strong: Absolutely, it's just been great to connect with all of our newfound colleagues. And I agree with the sharing of ideas and seeing what we can do to maybe move this work forward to be able to have a farther reach. You just talked a little bit about the student training. But I do think one of the things our group has been talking about is, you know, how can we begin to train clinicians in understanding the constructs related to narrative and identity and methods to use with our clients and exploring their own stories to help them move forward? I was wondering if you could tell a little bit about what the working group has been discussing and maybe has in the works.

Sabine Corsten: I already mentioned it a bit. So, it is about how to add to, what training could look like, or what we really want to share with clinicians and students. And to me, I don't know what you think, but there are two parts to it. There's this part about giving the theoretical background and really facilitating people in understanding why it is important to look at identity and how identity is connected to communication. And, again, this is connected to quality of life and to our work. So, because I think the aim of rehabilitation is a growth in participation and quality of life, and the training part is also closely connected to this. So, giving them the tools to do this, to feel comfortable so that they know how to ask questions, or how to react when people start crying, for example. I mean, it's normal to be upset when you talk about, for example, your stroke story. So, if you are sad that you've lost specific skills, this is very normal. I think this is the part, knowing about the background and knowing about the tools or methods you can use. And the second part is about the mindset to really see that this is our work, and we are responsible for it because we know how to facilitate communication and how to open the space for this kind of conversation. And I think this should also be part of this experience that we want to share with clinicians and students. That they can see this as really their responsibility, but also as a big chance for us to have a new kind of working area, in addition, of course, to the classical field and to the language-based therapy.

Katie Strong: Yeah, I agree. I agree. It's beautiful work, but it does take a different mindset to do. Well, Sabine, we're coming to the conclusion of our conversation, and I was just curious if you had any final thoughts you'd like to share with our listeners as we wrap this up?

Sabine Corsten: Whoa, that's a really difficult one, because I think we talked about a lot of important topics, or thoughts during the last hour almost. I think, maybe the take-home message is to first be aware of the psychosocial consequences of aphasia. I mean, I think a lot of people know about it, but really to be aware of all the changes these people suffer from. It's not only about language, it's about all the other life areas we mentioned. And maybe another take-home message I already mentioned is to feel that we as speech and language pathologists can be part of the solution. So that it's really our part to offer approaches and to conceptualize approaches that might help here. Because, when I look, for example, at the Stepped Care program, this is not established in Germany. But for example, in Australia, this means that really everybody suffering from aphasia can be part of a psychosocial approach. And then, depending on the severity of the psychological difficulties, you can decide if you only maybe have a kind of biographic intervention, or if you need problem solving therapies, or if you really need psychotherapy. I think this would be a good thing to start with, as maybe level one interventions like the storytelling approach, or like the biographic narrative approach, that we start establishing these kinds of approaches for people with aphasia. And that speech and language pathologists feel comfortable doing it, but they also have the opportunity to maybe collaborate with psychologists and can say, "okay, and now we have another level or another severity of psychological problems." And now we need to collaborate, or the psychologist needs to take over. I think that if we can go on that journey, this would be great to find more solutions in collaboration with other disciplines.

Katie Strong: Yes, I agree. I agree that we, you know, have a role in supporting people beyond just their language impairment and that using story is one way to do that. Absolutely. Well, Sabine, I appreciate the conversation today. Thank you so much for being a part of this. And in the show notes, listeners, we'll have some ways for you to contact Sabine and also some links to references to some of the things that we've discussed today. So, thanks so much for being here.

Sabine Corsten: Thank you again for the invitation. It was really an honor for me, and I think the time flew by now. So, it really felt very fast.

Katie Strong: Well, thanks so much.

On behalf of Aphasia Access, we thank you for listening to this episode of Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to check out our growing library of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.

Contact for Sabine Corsten – email [email protected]

Acknowledgements – A special thank you to Amanda Zalucki from the Strong Story Lab at Central Michigan University for their assistance in the transcription of this episode.

Resources

Corsten S., Konradi, J., Schimpf, E. J., Hardering, F., & Keilmann, A. (2014). Improving quality of life in aphasia: Evidence for the effectiveness of the biographic-narrative approach. Aphasiology, 28(4), 440-452.

Corsten, S., & Lauer, N. (2020). Biography work in in long-term residential aged care with tablet support to improve the quality of life and communication – study protocol for app development and evaluation. International Journal of Health Professionals, 7(1), 13-23. https://doi.org/ten.2478/ijhp-2020-0002

Corsten, S., Schimpf, E. J., Konradi, J., Keilmann, A., & Hardering, F. (2015). The participants' perspective: How biographic-narrative intervention influences identity negotiation and quality of life in aphasia. International Journal of Language and Communication Disorders, 50(6), 788-800. https://doi.org/ten.1111/1460-6984.12173

Lucius-Hoene, G., Holmberg, C., & Meyer, T. (2018). Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford, UK: Oxford University Press.

Menn, L., Corsten, S., Laurer, N., & Wallace, S. J. (2020). The Effectiveness of Biographical Approaches in LongTerm Care: A Systematic Review. The Gerontologist, 60(4), e309-e238. https://doi.org/ten.ten93/geront/gnz074

Shadden, B. B. (2005). Aphasia as identify theft: Theory and practice. Aphasiology, 19(3-5), 211-223. https://doi.org/ten.ten80/02687930444000697

Strong, K. A., Lagerwey, M. D., & Shadden, B. B. (2018). More than a story: My life came back to life. American Journal of Speech-Language Pathology, 27, 464-476. https://doi.org/ten.ten44/2017_AJSLP-16-0167

Strong, K. A., & Shadden, B. B. (2020). The power of story in identity renegotiation: Clinical approaches to supporting persons living with aphasia. Perspectives of the ASHA Special Interest Groups, 5, 371-383. https://doi.org/ten.ten44/2019_PERSP-19-00145

Video Resources

Aphasia CRE Talk - Improving the Quality of Life in Aphasia, The biographical narrative approach. - Prof Sabine Corsten https://www.youtube.com/watch?v=NGIFZkysDYA

If you liked this episode – more listening…

Additional Aphasia Access Conversations Podcast episodes relating to the topic of narrative and identity.

Episode #5 – Insights and "Aha!" Moments About Aphasia Care with Professor Emeriti Barbara Shadden https://aphasiaaccess.libsyn.com/insights-and-aha-moments-about-aphasia-care-with-professor-emeriti-barbara-shadden

Episode #55 - The Power of a Story: A Conversation with Katie Strong https://aphasiaaccess.libsyn.com/the-power-of-a-story-a-conversation-with-katie-strong

"Black Americans Talking About Us" with Michael Obel-Omia, Donald Cunnigen, Denise Mendez, and Roy Hamilton

Interviewer info

Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.

Michael Obel-Omia

Michael Obel-Omia is a public speaker, writer, and educator who has aphasia due to a stroke in 2016. In his tireless efforts to improve, he has found poetry allows him to express himself in ways that speech cannot. An avid advocate for people with aphasia, Michael has published essays about experiences in the journal "Blood and Thunder: Musings the Art of Medicine; The Boston Globe; the Providence Journal; and Rhode Island NPR's This I Believe. Michael lives with his family in the beautiful town of Barrington, Rhode Island.

Links:

Boston Globe article about Michael Obel-Omia

A Black Father Wonders: Is 'The Talk' Enough? by Michael Obel-Omia (Boston Globe article about disability and race)

Finding My Words: Aphasia Poetry by Michael Obel-Omia (book)

Ask the Expert with Michael and Carolyn Obel-Omia (National Aphasia Association video)

Roy Hamilton

Roy Hamilton, MD, MS, FAAN, FANA is a professor in the departments of Neurology, Psychiatry, and Physical Medicine and Rehabilitation at the University of Pennsylvania, where he is the director of both Penn's Laboratory for Cognition and Neural Stimulation (LCNS) and the Penn Brain Science, Translation, Innovation and Modulation Center (brainSTIM). His research uses noninvasive electrical and magnetic brain stimulation to better understand the neural basis of language and to enhance aphasia recovery. Dr. Hamilton has also been recognized nationally for his work in diversity in neurology and academic medicine. He served as the inaugural Assistant Dean for Cultural Affairs and Diversity at the Perelman School of Medicine and is the inaugural Vice Chair for Diversity and Inclusion in Penn's Department of Neurology.

Links

brainSTIM

Laboratory for Cognition and Neural Stimulation

Instagram

Twitter: PennbrainSTIM

Donald Cunnigen

Dr. Donald (Doc) Cunnigen is Professor emeritus of Sociology at the University Rhode Island, where he was the first Black full professor of sociology with tenure since the founding of the university in 1892. He was a member of the steering committee that started the Black Americans with Aphasia Conversation group and continues to be an active member of the group.

Doc Cunnigen videos

2011 Harlem Book Fair panel on the Obama Administration

Hands in Harmony: Aphasia Clefs

Denise Mendez

Dr. Denise Mendez is an educator who worked for 29 years as a teacher, administrator, and curriculum coordinator. In 2017, she suffered the first of four hemorrhagic brain bleeds (from an AVM) and was never able to return to her job. Her life-long passion for teaching and advocacy is still there. Aphasia just changed who she serves. She has a website, More Than Aphasia.com and a podcast called Still Something To Say. Denise is one of the leaders of the Mid Atlantic Aphasia Conference, and a facilitator of the Penn State Alumni Aphasia Group. She also participates in multiple aphasia groups, including San Francisco State's Black conversation group NAA's Black Americans with Aphasia Conversation Group. Denise's motto is "I have aphasia, but aphasia does not have me!"

Links:

https://morethanaphasia.com/

Twitter: MoreThanAphasia

Podcast: Still Something 2 Say Podcast on Spotify

Additional Notes:

Aphasia Access Aphasia Conversations Episode 102: Researching Health Disparities in Minority Stroke Survivors with Dr. Davetrina Seles Gadson

EDITED TRANSCRIPT

Lyssa Rome

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication impairments in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration and ideas that support their aphasia care through a variety of educational materials and resources.

June is Aphasia Awareness Month, and I'm excited to be today's host for an episode that will feature the National Aphasia Association's Black Americans with Aphasia Conversation Group. I'll be talking first with Michael Obel-Omia, a co-founder and co-host of the group. Michael is a public speaker, writer, and educator who has aphasia due to a stroke in 2016. In his tireless efforts to improve he has found poetry allows him to express himself in ways that speech cannot. An avid advocate for people with aphasia, Michael has published essays about experiences in the journal Blood and Thunder: Musings on The Art of Medicine, the Boston Globe, the Providence Journal, and Rhode Island NPR's This I Believe. Michael lives with his family in the beautiful town of Barrington, Rhode Island. Michael, welcome to Aphasia Access Conversations Podcast, I'm really glad to be talking with you today.

Michael Obel-Omia

Thank you so much. I'm blessed to be on this opportunity. Thank you so much.

Lyssa Rome

I wanted to start by asking you why you wanted to start an aphasia group for Black Americans.

Michael Obel-Omia

Thank you, Lyssa. I had a stroke on 21 May, 2016. And I worked very hard to be able to talk first. But no one had talked about being a Black person, about the ideas we had. So I talked to Darlene Williamson. And I said, this is great. I know so many wonderful people. Aphasia Resource Center is so plentiful, so wonderful. I've been creative writing, I've done Toastmasters, everything like that. But I still haven't spoken to Black Americans.

There are 2 million people who have aphasia. And probably about 10% of the population is a Black person. So I said to Darlene—I said, "Is it possible I could talk to people about being Black with aphasia, to talk about what's going on?" And she was very excited. She called Roy Hamilton. I spoke with him, from the University of Pennsylvania. I talked to him for a while. And it started, we started doing it. I started thinking about what we could do. We called a few people together, emailed. All of a sudden, I think in January 2022, we had people on the Black Americans with Aphasia Conversation Group, four or five people at first. But now, we have meetings twice a month in April, in May, etc. with 19 participants. It's a wonderful thing now. It's really great.

Lyssa Rome

Wow. So it's grown from this, this need that you felt, and that you saw, to have a space for Black Americans with aphasia, to… it sounds like a really thriving group.

Michael Obel-Omia

Yes. Yes, that's true. And again, please remember, there are dozens or hundreds of people with aphasia, and it's wonderful. It really is great—to hear from different people is wonderful. But this is a chance for a few Black people to talk about being Black.

Lyssa Rome

When the group came together for the first time, what did you think? Or what was your reaction when you were among other Black people with aphasia? What did that feel like for you?

Michael Obel-Omia

Well, of course, I'm an educator—28 years teaching English and everything and preparing for education, everything, English. So I was very nervous. The first time I said, "What am I gonna do?" I sat down and wrote out the outline of what I was going to do. I had to have all the ideas. I went on the internet for ideas—what's happening here, what's happening there. I'm very nervous about things. I'm nervous about everything now, with the stroke, with everything, I'm nervous. But I was already prepared with an outline. I had it written down, ready to go. And I was ready to do that.

We started talking about, "Well, what are you doing? What's going on? How's it happening? What do you do that's so much fun?" So we started talking about things and talking about ourselves. And just chatting about things. I had my outlines so precise, written down, for conversations—being an English teacher. But now I just go in and I go in, I'm smiling and laughing about "What's going on. How are you doing? How is it, having aphasia? How is it, talking about what's happening? What's getting in the way?" And that is one hour. That's what it is: Black Americans talking about us.

Lyssa Rome

Sounds like a really meaningful experience. And when we first spoke about doing this podcast, you described the feeling of relief that you felt, being in a room with other people who shared this experience with you.

Michael Obel-Omia

Yes, I have great relief. I have a great feeling. I'm so relaxed, is what I am. When I'm talking to someone right now about podcasts, obviously, my senses are tense right now. My shoulders are high. I'm nervous. I'm worried about what I should say. But when I call the Black Aphasia Conversation Group, my shoulders drop down. There's great relief. Great relaxing, I'm smiling. I'm laughing. It's a lot of fun just to see what's going on.

There are serious issues too. One time, a woman wrote about fear and anxiety. What was going to happen, what I'm worried about, I think being anxious, having a stroke on 21 May, 2016. I'm really anxious about things now. Really, anxiety. I'm very worried things will happen. It's very silly. I mean, when I think about it, it's very silly, but I'm anxious about things.

So a woman asked us, "What about aphasia? What about anxiety?" And we talked about that. Dr. Gadson—Dr. Davetrina Gadson— talked about fear or flight. And of course, for me, Fate—Native Son by Richard Wright. Fear, flight, fate. So we talked about that very seriously, about what it is to be so anxious about things. So there are things that are fun and laughing and great relief and comfort, but fear and flight and fate. Yeah, that's there too.

Lyssa Rome

So it sounds like you are able to talk about a wide range of experiences that you have—both the joyful experiences, and then also the harder experiences and the anxiety and the other emotions that can go along with aphasia. You mentioned Dr. Davetrina Seles Gadson, who was recently on our podcast. The episode with her will be linked in our show notes. I'm wondering if you could describe how the group works a little bit more. What's Dr. Seles Gadson's role? What's your role? You mentioned that you meet twice a month? Tell us a little bit more about the nuts and bolts of it.

Michael Obel-Omia

And so we're all on here on the Zoom 12 of us, 14, 19 participants, and we can talk about it. What makes us tick? What's happening? So everyone can talk about something. Everything—we can talk about it. We talked for about an hour—what's happening, what's going on. And it's wonderful.

Twice, or three or four times, we've had Black Jeopardy, which is Jeopardy with Black people. And she asks great questions. It's a lot of fun to hear. And we can laugh about that as well. It's great. And it's a lot of fun to ask great questions. It's just fun to talk about that. And people feel really good about ourselves.

But we stop for a few seconds to talk about: "How can I get prescriptions? How can I find about someone [to answer] questions or ideas or opportunities or issues? I mean, how do I get somebody? How do I find somebody in Philadelphia? How to find somebody near Maryland about this question? How do I find this out? How do I find speech therapy? How do I find that?" And sometimes it's pretty frustrating. It's like, "Well, I don't know how to do this anymore. I used to meet with a speech therapist, and now they say, 'No—no more anymore.' What can I do?" And so we talked about that.

Lyssa Rome

Yeah, yeah. So many frustrations and obstacles that aphasia can cause for people and I think it sounds like what you're describing is people with Aphasia in the group helping one another to find some solutions. Is that one of the functions of the group?

Michael Obel-Omia

Yes, I have the idea. I have aphasia. I have ideas of what I'm supposed to say, but sometimes I can hear people say something. And—excuse me, I try to be humble—I'm a pretty smart guy for years with aphasia. I was a teacher at Roxbury Latin, at William Penn Charter, University School. I was the head of school at Paul Cuffee School. I'm pretty smart. I can do that. Now, I got aphasia in 2016. I have the idea now, but I can't do it just right.

About a month ago with the Boston Globe—I just did an article in the Boston Globe about a time I was in North Carolina with Aphasia Access that day. Aphasia Access was wonderful with Stroke Across America. It was a wonderful, wonderful, wonderful night—Thursday, Friday, Saturday, Sunday. It was great.

I was at the airport in Durham, to get on at North Carolina at Charlotte. And I was anxious because I couldn't do something that the security officer asked of me and I froze. I was frightened. And I was very lucky—a very kind, very young Black man reached out to me, and said, "Come on, follow me. Come on." And I followed him. And very simple, all of about 25 seconds. But I was very afraid. I was very worried about what I was supposed to do. What am I supposed to do right now? What do you want me to do right now? I was froze. But I walked easily—walked through very easily, very comfortably, very quietly. But yeah, I have aphasia. It's really hard. I can't imagine—I just can't imagine how hard life is sometimes.

Lyssa Rome

Yeah, yeah. And I mean, I think what you're describing are some of those moments where aphasia can really get in the way. And I can imagine that as a Black man in America, feeling frozen when someone has asked someone, say like a TSA agent in the airport, is asking you to do something, and you're not sure what they're asking you, there's an extra layer, or many extra layers, of experience, of history, of fear that goes along with that, that I'm not sure—as much as, say a white person who has aphasia can understand the experience of not knowing exactly how to respond to someone, not fully understanding what they're saying. I'm not sure that they can understand that, or it might be harder for them to understand that second level of your experience as a Black man with aphasia.

Michael Obel-Omia

Yeah, being a Black man. It is very hard. I don't think on a podcast you can see my face, but I write things the way I look at things. I can look very serious and very angry. But you know, my face is angry and frustrated, and I have to deal with that sometimes. And I can't do anything about it. Sometimes, I look very angry, but it is what it is. And I understand that sometimes I can be looked at this way. It's one of the chances of life.

Lyssa Rome

Michael, you told us about the origins of the National aphasia Association's Black Americans with Aphasia Conversation Group, and talked a little bit about how that group works. I know that there are some other similar groups out there. And one of them is San Francisco State's Gray Matter Lab, which also has a Black Conversation Group. There are some Spanish-language aphasia groups as well. I'm wondering, what should people know about identity-based aphasia groups? What advice would you have for people who want to start a group like yours?

Michael Obel-Omia

Every single lives have aphasia, 24 hours, seven days a week. Always aphasia. Always. When this ends, I have to go back to my house, or my apartment, my home, wherever, and I have to think about aphasia. I'm always thinking about having aphasia. So it's wonderful to think about aphasia for one hour, twice a month, I can relax. I can say what I feel about things. I can laugh. I can stumble and fall over words. And it's okay. That's all right. It's fine. It's wonderful. And that's what this opportunity does every time. We can talk among ourselves, with other Black people, smile, laugh, be comfortable, relax. We can be worried about things sometimes. We can be anxious about fear and anxiety. Mostly we can laugh, what we're doing. And it feels right. It feels good for one hour, once every twice a month. So yeah.

Lyssa Rome

So I also had the chance to speak with some other members of the National Aphasia Association's Black Americans with Aphasia Conversation Group. And here's what they had to say about it.

[music]

My next guest is Dr. Roy Hamilton, professor in the departments of neurology, psychiatry and physical medicine and rehabilitation at the University of Pennsylvania, where he's the director of both Penn's Laboratory for Cognition and Neural Stimulation, and the Penn Brain Science, Translation, Innovation and Modulation Center. Dr. Hamilton also serves on the board of the National Aphasia Association. Dr. Hamilton, welcome to Aphasia Access Conversations.

Roy Hamilton

Thank you. It's such a pleasure to be here.

Lyssa Rome

So tell me a little bit about why you think it's important for Black people for people of color, maybe more generally, with aphasia to have a space to meet with other people who identify in the same way.

Roy Hamilton

Well, first, I want to take a step back and talk about aphasia as it occurs in individuals who identify as Black or African American, you have to understand that aphasia has a couple of principal causes. For many individuals, it's on the basis of having had a stroke. For others, their aphasia arises from having a neurodegenerative condition, something called primary progressive aphasia. But for both of those causes, whether it be neurodegenerative conditions like underlying Alzheimer's pathology, or whether it's vascular disease like stroke, it turns out that individuals who are African American are at substantively higher risk than the rest of the population. And because aphasia is the most common cognitive manifestation of stroke, if we understand that conditions like stroke are much more prevalent in this population, we're also talking about a population that is substantively more burdened by aphasia or challenged by aphasia. So just on the basis of what causes the condition, we understand that we're talking about a population that is at greater risk.

Now, having said that, in addition to the incidence and the prevalence of the condition itself, there are also many, many barriers that prevent individuals who are Black in this country from obtaining all manner of care, and amongst that care, ways to address, or ways to help with their aphasia. And so, targeted efforts are especially important when you're trying to overcome these kinds of barriers.

And then thirdly, in instances where individuals are able to access care, it's often the case that they're treated differently. They receive a different level or a different kind of care than the rest of the population. So that's another reason why it is important to be focused and intentional and to think about creating venues, creating spaces, where we can focus on the needs of individuals who are Black, who are living with aphasia.

Lyssa Rome

So then, tell me about what you think this group is doing for the people who are part of it?

Roy Hamilton

Well, I think one thing that's important about the group is that it provides a sense of community, a level of comfort. I think that that comes through in the kinds of things that are discussed, the kinds of conversations that are had. They often range towards topics that are culturally relevant, that feel comfortable to the group. And here again, I want to draw a distinction or perhaps point to another aspect of having a focused, intentional group that makes it valuable. Groups of individuals who are brought together to have conversations have an easier time having conversations when they are comfortable with each other, when they're comfortable with the setting, and when you're talking about topics that seem relevant to them. So I think bringing all those elements to a conversation group is a particular value. And I think it's a particular value to this group.

Lyssa Rome

You mentioned earlier about the incidence and prevalence of aphasia for Black people in this country. So is there anything else that you want to add that you think is important to have in here, from your perspective?

Roy Hamilton

When we're talking about aphasia, and how it affects Black communities, I think the thing that I would emphasize is that this is not an issue that should only be of interest to individuals and communities who are Black, or persons who care for and work with persons with aphasia, who are themselves marginalized, or minoritized individuals. Health equity, and equity around aphasia is everyone's responsibility. And so I think it is perhaps as important, if not more important, that everyone be aware of disparities as they exist in aphasia, for individuals who are Black and other populations as well. And so I'm really glad that we are having this opportunity to have this conversation.

Lyssa Rome

Thank you. I think that that's an important note to end on. And I appreciate it. Thanks so much for taking the time to talk with me today, Dr. Hamilton.

Roy Hamilton

Really, it's my pleasure. Thank you.

[music]

Lyssa Rome

My next guest is Dr. Donald Cunnigen, Professor Emeritus of Sociology at the University of Rhode Island, where he was the first Black full professor of sociology with tenure since the founding of the university in 1892. He was a member of the steering committee that started the Black Americans with Aphasia Conversation Group and continues to be an active member of the group. Doc, welcome to the show.

Doc Cunnigen

Thank you. What has it meant to me? It has been an important place where I can feel comfortable in sharing my experiences as a person who, well, basically suffers from dysarthria.

Once I was in another group, and I mentioned our group. And one of the members turned around and asked, "Why do you need an all-Black group?" And I had to say, "The fact that you asked that question is an indication of why we need the group!"

People feel comfortable in groups where they can express themselves the way they are, and not feel somewhat intimidated if they don't speak proper English or people are making fun of their dialect. You may not feel free to say things the way you feel like saying them. So we explore issues on a regular basis that deal with our daily lives. And a lot of people don't fully appreciate that we have a different journey through life as people of color. And we all have different racialized experiences.

There are some commonalities. But the one commonality is that we are Black in America, and that is a special thing in and of itself. And since we have aphasia, it somewhat colors all of our experiences, like negotiating the racism that one might find in institutionalized medicine. Sometimes it's subtle and other times it's blatant. But we often encounter it. And this group helps you to deal with it.

Lyssa Rome

Yeah, yeah. It sounds like you're describing a space in which you can both be yourself and then also connect with others who have an experience that people who aren't Black—people with Aphasia who don't have that experience of being Black in America—just might have a very hard time understanding. And so to have that space seems like a very important thing.

Doc Cunnigen

Well it helps us to get through the day, but it also helps not only with those institutional things I referenced, but little experiential things that we have, that people with aphasia, dysarthria, or TBI only know. That we have to deal with. People bring up, "Oh I have this problem, or I have that problem." And we can share those types of things. So this is a very comforting place, where people share with each other the good times and the bad times.

Lyssa Rome

What advice would you have for people who are interested in starting identity-based aphasia groups?

Doc Cunnigen

Well, it helps to have someone who is sensitive to one's cultural or linguistic abilities. That awareness is helpful. It will also help if there is someone who is culturally or linguistically identified with the group, but it's not necessary, if you have the sensitivity. I think it is important not only for one to be sensitive, but to become a bit knowledgeable. Reciprocity, being able to exchange with the stroke survivor, is critical. Listen. Listening is very difficult for anybody, whether they have aphasia or not. Now that I have difficulty with my speech, I appreciate the ability to listen and have patience.

Lyssa Rome

Doc Cunnigen, thank you so much for sharing your thoughts about the group. I really appreciate it.

Doc Cunnigen

Thank you for having such a nice program.

[music]

Lyssa Rome

My next guest is Dr. Denise Mendez. Denise is an educator who worked for 29 years as a teacher, administrator, and curriculum coordinator. She has a website: morethanaphasia.com, and a podcast called Still Something to Say. Denise is one of the leaders of the Mid Atlantic Aphasia Conference and the facilitator of the Penn State Alumni Aphasia Group. She also participates in multiple aphasia groups, including San Francisco State's Black Conversation Group, and the NAA's Black Americans with Aphasia Conversation Group. Denise, welcome to the podcast.

Denise Mendez

Thank you so much, Lyssa.

Lyssa Rome

Denise, what has the NAA's Black Americans with Aphasia group meant to you?

Denise Mendez

Well, you know what? The conversation group, it's sort of like—this sounds corny—but it's family, you know. It's a comfortable, safe place for us to check with one another, "How are you? How's everything going?" It's very familial. I don't know, it sounds weird. But like I call some of the folks there, different ones, I'll say like, "Oh, that's my cousin." You know what I mean? Like, you've got all these cousins down this family line, but aphasia is what made us connected.

So we encourage one another, we teach each other, we just share information from other people. The beautiful thing is, people are all over the United States. It's not just a little group out of Philadelphia, or out of the New England area, because that's where our leaders are, but we're all over the United States. And we're connected. It's very comfortable, where sometimes, different things that happen in the United States, I mean, come on, let's not even go into the whole history of the United States and all of that, but you're going to get different perspectives when it's a group with all African Americans there. You have different perspectives than, say, your general population. What's very good about the groups are the groups are aphasia-friendly. Nobody's talking up here. Nobody's talking underneath anyone. It's just a conversation. It reminds me of how we used to have in the summer, and your whole family would be there. What are those called when your family…

Lyssa Rome

Like a family reunion?

Denise Mendez

Reunion, thank you, when everybody's there. So you've got some young people there, you've got some of the seniors there, you've got the middle group there. But everybody's having a conversation, and everybody's putting a little bit of this on, we're sharing some music, we're sharing some games. And guess what, when people have a bad day, or a rough time, or they just need to vent, it's a space for them to do that as well.

Lyssa Rome

Yeah. That brings me to my next question for you, which is, you know, you've been part of these two groups plus many others. What advice would you have for other people with aphasia who are interested in starting an identity-based aphasia group?

Denise Mendez

You got to have trust, if people don't trust that this is a safe place, that this is a place that I can just say what I want to say, the way I say it, I don't have to measure my words, or people are going to judge me, because I'm using double negatives, or dropping off the INGs and things like that off your words, then it's just a more free conversation.

So I applaud anyone who would like to start an identity-based group. But just know, you can't just wake up and say, you know, I'm gonna do that tomorrow. You've got some homework to do. So do some homework, find out what the need is for the group. And just remember, you've got to be authentic, you may not be a part of the identity group. That doesn't mean you still can't be effective facilitating that group.

Lyssa Rome

I think that's great advice. And I really appreciate hearing from you about what this group has meant to you and also your thoughts about these kinds of identity-based groups in general.

Denise Mendez

Yeah.

Lyssa Rome

Dr. Denise Mendez, thank you so much for being part of this podcast.

[music]

Lyssa Rome

Michael, I know you brought in the mission statement that you wrote, when you were starting the Black Americans with Aphasia Conversation Group. Would you like to share that with us?

Michael Obel-Omia

Yes. The Black American Aphasia Conversation Group is a place for Black people, the patient to share their stories, provide support, encourage meditative reflection, and brainstorm ways to advocate for relevant policies. This diverse, inclusive, aphasia-friendly group will discuss the unique challenges and gifts we share due to our experiences with disability and race. And it's open to all who support its mission of creating an emotional refuge for Black persons living with aphasia.

Lyssa Rome

I think that that mission statement is such an important summary of what you've been talking about, of the kind of space that it sounds like you've been able to create with this group.

Michael Obel-Omia

Well, thank you, thank you so much. With being this part, it's great for you to hear about it.

Lyssa Rome

It sounds like you've found, in that hard work and the advocacy that you've done, you found another way to make a meaningful difference for other Black people with aphasia, who are part of this group.

Michael Obel-Omia

Absolutely. Yes.

Lyssa Rome

Thank you so much for talking with us, for sharing about your group—about the National Aphasia Association's Black Americans with Aphasia Conversation Group. Michael Obel-Omia, it has been such a pleasure talking with you.

Michael Obel-Omia

Thank you very much.

Lyssa Rome

And thanks to Dr. Roy Hamilton, Doc Cunnigen, Denise Mendez and Darlene Williamson of the National Aphasia Association.

Thank you also to our listeners. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected] Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.

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:

1. The LPAA fits interventions for mild cognitive impairment too.
2. We need to focus on training the next generation to understand the applications of LPAA to other disorders and contexts.
3. You don't always need a standardized test, you can use goal attainment scales to measure anything.
4. We need to be prepared to counsel individuals with mild cognitive impairment, as we are often the discipline having those conversations.
5. When we intervene with individuals with mild cognitive impairment early, we can involve them as collaborators.
6. There is a continuum of counseling needs that changes over time. See Alyssa's counseling plus paper in SIG 2 Perspectives.

Interview Transcript:

Jerry Hoepner: Hi Alyssa. Good to see you.

Alyssa Lanzi: Hi, good to see you. I'm happy to have a conversation with you today.

Jerry Hoepner: Likewise, I'm looking forward to this conversation. It's kind of tradition that at the beginning of podcast we talk a little bit about your journey in your path to the life participation approach. So, I'm hoping that you can share a little bit about why an LPAA approach is so crucial to your research and clinical interactions.

Alyssa Lanzi: Yeah, Absolutely. Well, thanks for having me, and I'm excited to kind of give a glimpse into how we can start to think about the LPAA approach outside of aphasia, because I think I'm a little bit unique in that way. And I am clinically trained as a speech language pathologist, and I was fortunate that most of my master's training was in a really strong university-based life participation approach model for aphasia. So, I had a large amount of experience working with Dr. Sarah Wallace and Katerina Staltari, and really thinking about group-based approaches for aphasia care. And I really fell in love with the functional nature of that model and with my master's thesis really tried to think about, well, how can we do this with individuals at risk for dementia with thinking about group-based approaches and functional care. And then I went on to get my PhD at the University of South Florida with Michelle Bourgeois. With a really strong research focus on functional approaches for mild cognitive impairment and dementia but also had the opportunity to work clinically the entire time during my PhD at voices of hope for aphasia under Jackie Hinckley, really learning about the life participation approach for aphasia. So, I feel super fortunate in that I have a lot of clinical work and exposure with the life participation approach that really has driven my research. Although I don't clinically practice with the life participation approach anymore, it really is a key foundation and a key kind of framework to how I have conducted all of my research and run the lab at the University of Delaware, which I'm currently a research assistant professor at right now.

Jerry Hoepner: Excellent. Yeah. And thanks for sharing that, I really believe there is not a lot of transferability and generalizability of the LPAA in the approach being someone who has one world or one foot in the traumatic brain injury world, and another foot in the aphasia world. There's definitely some strong carryover across those contexts, and I think members of aphasia access are really interested in thinking about how that extends into those contexts. So, I really appreciate that. And like I said before, you have quite the pedigree in terms of experiences with very life participation approach minded academics, and having some of those clinical experiences, is really just so crucial for those, you know, when you step into the research world that you're doing something that really applies. So, I know you already talked about Sarah Wallace and Dr. Satari and Dr. Bourgeois and Jackie Hinckley. But are there other people along that journey that have kind of shaped the way that you think about LPAA applications to aphasia but beyond obviously?

Alyssa Lanzi: yeah, I think you know, really the names that you mentioned were kind of the key mentors in the process. However, individuals like Roberta Elman, and really her approach to kind of book and learning and reintegration was structured. But flexible activities are really kind of key to my thinking, and also, as you know, an early career researcher as well. Folks like yourself and Tom and Katie really show how we can also train students in this approach as well, which is kind of being key to figuring out how I really run this lab that's based in life participation. That's not only my line of research, but also supporting the next generation. I feel fortunate in that I have mentors that really have integrated a life participation approach in many different settings from big R1 universities to smaller, R2, and R3 universities to clinical practice settings to nonprofits. And I think I've taken pieces of all of those to really support my research and teaching pedagogy, and really life participation in that way, and without aphasia access, I wouldn't have had access to those leaders and mentors in the field like yourself, and it really has given me an opportunity to have conversations with these folks, and every single conversation has really impacted and influenced my work thus far.

Jerry Hoepner: I think that tends to be a really common reflection on aphasia access that everyone is so accessible. So, the name really says it, and willing to have those conversations. And certainly, that supports us in all of those avenues, research, clinic, well and academic in terms of teaching as well so completely agree with that.

Alyssa Lanzi: I think that's what's a beautiful thing about aphasia access and the life participation approach is that it's not just research, either. Right? It's research, it's clinical, it's teaching, it's mentoring, it's service. And I think we will probably talk about in a little bit. But in all of my work that's really what I try to think about, I don't just try to think about, you know, research, I try to think about well, how can I study this so it can actually be implemented in clinical practice? And then how can I also teach the next generation using this approach in that way? And I think that framework, although we often think of life participation as like a clinical approach. In some ways it's really this entire framework to all those kind of core components that are necessary in terms of teaching, research, clinical care and service.

Jerry Hoepner: I really love the way that you describe that, because I don't know that that's been done really clearly before. But there is a thread running through all of those pieces, and it kind of speaks to your experience with Jackie Hinckley in terms of thinking about that implementation piece, and how we make sure what we're doing matters, and is the right stuff in the first place. And obviously teaching is near and dear to my heart, and being able to frame that in a way that students understand, but also feel like it's not something that's high in the sky that you know only a few people do, but that's accessible and usable by everyone, and even for my students. I mean, I know that a lot of my students will end up in a school setting, and I know that these foundational principles of LPAA still have relevance to them. So, I say, you know, regardless of where you're going. This content matters, and it should shape the way that you think conduct LPAA work.

Alyssa Lanzi: Yeah, you don't have to be at a center to conduct LPAA work, you don't have to be with people with aphasia to conduct LPAA work, and that's the cool part of it. And having these conversations is an opportunity to kind of brainstorm with one another of, well how do we take you know, from the traditional mold, how do we kind of break that and really think of it as threads that can be kind of interwoven into all these elements that are core components of our discipline in a lot of ways.

Jerry Hoepner: Agreed. Maybe that's a new task for aphasia access worker to kind of map all of those pieces, because I do think not. Maybe individuals have those pieces, but it hasn't been all put together. So, I appreciate that overview.

Alyssa Lanzi: And yeah, hopefully.

Jerry Hoepner: well. I've been having fun re-reading and refreshing myself on your work on. I used a lot of it within my teaching so. But it's always fun to see when you read something again that you pick up something that you just didn't even like process before or you don't remember you process it, maybe. But clearly, I mean, there's this thread going through all of it about person-centered strength-based care right at the heart of all of that. It really one of the things that stood out to me the last couple of days as I've been meeting is that emphasis on fostering choice and collaboration along the way in every single step with the with the individual, with mild cognitive impairment or dementia, with their family members. And I think that's really crucial. I mean whether you're kind of choosing an external memory aid, or script, or whatever is best right. Can you talk about how you facilitate those choices? Maybe a little bit about the kinds of tools that you use on one end, but also a little bit about how you just foster a mindset of that collaborative decision making, because, you know, sometimes people can just want to defer to you and say you tell me so. I'm interested in your thoughts on both of those pieces.

Alyssa Lanzi: Yeah, Absolutely. Well, thanks for the flattering words, and I'm happy. You picked out the core elements there, because I think those are really kind of the key words of a lot of the work that I try to do, and starting really with person or family centered, in that way, and it's tricky. I think a lot of people say that their work is person centered, and we can always argue. What do you mean by that? And how do you ensure that, same with functional right? But something I try to teach people, and my students are just because it's related to something practical doesn't necessarily mean it's a functional approach, either, you know, so really kind of parsing out by what we mean by that. But in particular, with working with folks with mild cognitive impairment and dementia, the goal is to really support their independence for as long as possible, and then to support their quality of life right? And a lot of times when thinking about people with chronic aphasia, it's very similar in that way, right? And that, you know, kind of gotten to a point. Not that improvements can no longer been made, but the shift is really about like, well how can you live the best life as possible? Right? How can we get you participating in as many things as possible, and that's the same mindset when we're working with people with mild cognitive impairment in particular. So, when I'm trying to design the treatment approaches that I'm testing with my clinical trials. Really, the whole framework is, how can we make something structured and standardized but flexible to that individual's needs. So, I think it starts from a treatment level, figuring out what are the active ingredients? What are the things that can't be changed, what are the core elements that can't be changed. And then, once we figure that out, then the meat of the sandwich, you know the meat of the treatment can be customizable to that individual right. And a lot of this work really comes from McKay Solberg, and views of cognitive rehab as well. But I think, when we think about person centered, we need to think about what are the core elements of this evidence-based approach? What are the active ingredients? And then what are the things that can change in between right? And when we're talking about external memory aids, it's not enough just to give somebody a calendar right. We're not seeing that individuals actually continue to use this calendar later on. And I would argue that's because of 2 reasons, one because we didn't systematically train them, and the use of it and 2 is because we didn't include them in the process from the start to the finish. And you are asking about what kind of tools and what things can be helpful. And in terms of thinking about goal development tools, a lot of times we can lean on our colleagues and occupational therapy and use a lot of the models that they have for goal development. So, they have the COPM which I'm probably going to butcher the name, but it's the Canadian Occupational Performance Measure, I believe it is, and that can be a really great tool to have a structured approach to goal setting. Same with goal attainment scaling, and incorporating some motivational interviewing techniques on top of it. But the key is that you have some type of structure, some type of evidence-based approach, on top of the conversation that you're having right, just asking somebody their interests is important, but we need to think about what's the best thing for our buck, since we have such limited time with them. So those 2 tools, in terms of goal setting have been really helpful for me, paired with using patient reported outcome measures and kind of figuring out how to use that as an initial conversation, and then paired with some further probing of tell me more about these items. Tell me more about the issues that you're facing. And then what I think is tricky, and where I relate most to my life participation colleagues are, what are the outcome tools, or what are the treatment planning tools that we can use to design these participation approaches. And it's hard because most of the outcome tools that we have are developed for looking at impairment-based improvements, right? So very decontextualized type tasks and that's really tricky. If the treatments that we're doing are all meant to be functional and person centered and improved participation. But we're not looking at necessarily improvements in worthless learning, or serial sevens or things like that. So, I couldn't figure out any tools. So, part of my dissertation work was designing a measure that was really aimed to help drive treatment planning. And then look at if there's gains an actual participation, so that tools called the functional external memory aid tool, and my lab in the last year or so have tried to do a lot of work, and coming up with free resources to train students, clinicians, and researchers, and how to use this tool to drive treatment planning because it's a little bit of a different way than we think of how to use assessment tools. Traditionally we think of assessment tools to tell us is that that person has an impairment or not and this is not designed in that way. It's really designed to tell you how to design your treatment, and a functional meaningful in person-centered way. I don't have great answers of what the tools are, but I think collaborating with clinicians and collaborating with evidence-based researchers really helps us to try to fill that gap in some ways.

Jerry Hoepner: Yeah, and I think you got at part of it when you talked about goal attainment scales that you could make that a measure of any goal that the person identifies themselves. You don't necessarily have to try to fit a tool around that you can just measure what they hope to change right, or what they hope to sustain in terms of function. So, I think that's really good and really helpful. Just want to kind of circle back to a couple of things you talked about active ingredients, and how to really recognize what those active ingredients are, what the cores are, and what is content that you can do without, so to speak, made me think of some of the recent work in RTSS from the standpoint of really mapping that out. But I think that principle of my own is really important. Just to be able to say what is at the core? What do I always need to do? And what is kind of supportive of that, and can be individualized? So that's really helpful.

Alyssa Lanzi: That shouldn't be on the clinician either right? If you're a clinician listening to this like that shouldn't be on you. This is on the researchers to consider from the beginning, and this should be really clearly outlined in this plan. And it is somewhat hard to figure out what some of these analyses like what are the active ingredients? But that's really, if you go to a talk, if you're a clinician on this call like that's what you should be asking, when you go to these talks like, what are the active ingredients? What do you think is really evident of what's making the change? It's not on you to decide. It's really on researchers to be thinking about this from the beginning, and not for you to try to figure out by any means.

Jerry Hoepner: Yeah, I think that's a really some really sound advice, because finding out what those active ingredients are that's really crucial, and I think there's times, and I won't say who, but I reached out to a researcher once to do some work related to their work, and I said, "So do you have some place where you have more specific information about what exactly you did?" And they said "it's all in the paper" and I was kinda like no, it's not all in the paper, and I think we're getting better at that, providing that information, at least to the best of our knowledge, what those active ingredients are. And you know this is on the researcher to provide that, and then to allow that clinician to be able to work within that framework. So, I'm really glad that you said that. I also wanted to highlight the fact that you talked about your measure, and I think the acronym is FEAT right?

Alyssa Lanzi: FEMAT, yep, close.

Jerry Hoepner: Sorry. Missed it. I missed one letter, but we'll make sure that that is in the list of resources at the end as well, so that people know how they can access that information, and you mentioned that you're trying to make as much freely available as possible. So I think that's really helpful for our listeners to know where to find that information.

Alyssa Lanzi: Yeah, the tool can be downloaded completely for free. And there's educational and training resources for free on there as well as we just publish an open access manuscript, describing with case examples of how to use it as well, because if we as researchers want clinicians to use our work. Constantly, we're hearing the biggest barriers pay walls and everything else so really trying to make this as accessible as possible, so that individuals can actually use it in their practice.

Jerry Hoepner: Well, that's really excellent. I really appreciate it, so I'll double check with you at the end, and we'll make sure we have all of that information there for the for the listeners to follow up on that. So, getting into the connection and the differences between someone with aphasia and someone with a mild cognitive impairment. There's a lot of overlap and most communication supports. And as I was reading your work, I was like overlap, overlap, overlap. But there's also some ground that isn't overlapping individuals with aphasia, particularly when you get to the cognitive kinds of constructs, and so forth. So, in terms of supporting someone with MCI or dementia. What are the key distinctions that you have in your mind about how to approach that. So, distinguishing them from maybe what you would use for a language assessment, or language support excuse me, for someone with aphasia

Alyssa Lanzi: I think the good thing is, there's many more similarities than differences. Right? We have this strength-based approach, this idea of participation, reintegration, isolation, depression. These are all major psychosocial factors that we know are associated with both populations and also acute. You know older adults are highest at risk. Right? We're seeing similar populations in some ways as well, so that strength-based participation-based reintegration, type approaches are all very similar. You know the key distinction or the key differences, I should say, is unlike people with a stroke, there wasn't an event that caused the impairments right, and that instead, we need measures that are really sensitive to early declines right? So, it's not like these individuals had a stroke or a brain injury, and immediately referred to speech, language, pathology. That's a very different pipeline to referral in that way. So, speech, language, pathologists need to do a much better job of advocating for our role early on where I don't think we have to do as much of that advocacy with people with aphasia now. Yes, all the aphasia folks don't come at me either because I know there's plenty of advocacy work that we need to do as well, but it it's a little bit different right, and that once aphasia is diagnosed, it's pretty clear that SLPs are the one to go to for the most part. For individuals with mild, cognitive impairment it's a bit different. So, we need to do a lot of advocacy work, and many of our tools, unfortunately, are not sensitive enough to these early declines. What's exciting is that language is actually showing as a pretty promising tool, a pretty sensitive metric. So, hopefully in the next, you know, 5 to 10 years we're starting to actually definitely be involved because we're noticing language changes or sensitive to these early declines, but so one is the early process, and the referral process is quite different. The other key difference in my mind is the preparation for the future and that individuals of mild cognitive impairment are at a very high risk for developing dementia due to Alzheimer's disease and in my work I am talking about mostly these clinical syndrome due to Alzheimer's disease is usually the bulk of my work. But for individuals with mild cognitive impairment. We really want to set them up with these tools, so that we can develop really strong habits and routines now and really rely on the strength of procedural memory, so that if they decline, they have these really good systems in place, and that's a very different mindset than people with aphasia. So, the mindset in that way is very different in our role in preparing for the future. So, I think the referrals is probably the big pipeline. How they get to you. The coping and the depression is all there. But viewed a bit differently. It's not, Oh, my God! My life has drastically changed instead it's, Oh, my God! What's gonna happen, you know, in 2 3 5 years. So, it's all those same constructs are there, but the rationale and the underpinnings are a bit different.

Jerry Hoepner: I want to just go back to a couple of the points that you said again. When I'm thinking about that that early intervention or early work with someone with MCI, I'm always telling my students part of what you said that idea that we want to establish those routines and habits. But the other thing I always think about going back to our previous discussion is that's the opportunity for them to make as many decisions about their future as they possibly can, and do that planning for the future. I find that to be a really effective way from a counseling standpoint to get them involved in kind of planning their future, and also building that acceptance right like this is coming. What can I do now to kind of take ownership and to take control of that versus if I wait, then it's going to be someone else's decision.

Alyssa Lanzi: Exactly. Exactly. We describe it. A lot of you want to be in the driver's seat and not the passenger seat.

Jerry Hoepner: Yeah, great metaphor. And I just wanted to mention one other thing when you were talking about that the fact that language is a really sensitive measure. You believe for individuals with MCI and predictors of for their dementia. You know some great work with the dementia bank in terms of talking about collecting samples and interpreting those samples. So, I know I'm kind of putting you on the spot for this. But any thoughts about that might lead us in the future in terms of knowledge.

Alyssa Lanzi: Yes, stay tuned. We more than likely have a pretty big grant coming our way, which is going to be exciting. But the current biomarker tools for detection, are costly and invasive. We're having MRI and imaging techniques which are costing, You know, so much money. Blood is becoming, you know, blood based biomarkers are at least a bit more cost effective. However, there's still quite still, quite invasive, and there's only a certain person who wants to come into a lab, you know, and do those types of things. So what we're hoping is that we can use language, and that people can provide us with language samples in the comfort of their own home, right and really reflective of these functional tools and paired with these other. You know data, this, this other data that we're collected, we can make this really kind of informed decision or inform diagnosis. So, hopefully, you know, we can get to the point where that is the case that people can kind of just answer some questions from the comfort of their own home and their smart home and their computer. And you know, on the back end we can analyze their language, and then, provide them with some information about what we're thinking in terms of diagnosis and things like that. The most exciting thing to me in my mind about language is that hopefully, we can get a sample of individuals to participate who are actually representative of those who have the disease and that with many of these imaging techniques, and with many of the blood-based biomarkers and these invasive techniques, there's only a certain type of person you know who wants to come to campus and do these things, and most of our large databases are really white, high SES folks who are just, not those who are at greatest risk for the disease. So, what I'm really hoping for with as really the area of language grows, thanks to a lot of the work that we're doing, and Carnegie Mellon are doing with Brian and Davida, and also Kim Mueller and her group at Wisconsin. Is that not only can we use it as a sensitive measure, but we can get people to participate because, hopefully, it reduces the common barriers to participation in research studies. So that's really kind of a focus of where we're going. And then, hopefully, with that information, we can better support those who are at greatest risk living with this disease.

Jerry Hoepner: Right and it seems like there's kind of a secondary effect to once you have those answers. There's a lot more SLP's than there are, you know, other mechanisms for measuring those bio measures. So, if you know that contact, maybe we can contribute to that earlier detection as well, so that's fantastic.

Alyssa Lanzi: Yeah, which is why we need more SLPs going in this space, and I love aphasia work. I'm an aphasia clinician at heart. But I hope we see after today and through many of my other colleagues that the world overlap so much. But we really need a lot of researchers in this space, because speech language pathologists have a lot that they can contribute, and could very soon be at the forefront of the of the diagnosis as well. So, any students on the call or clinicians wanting to go back. My labs and others are really recruiting, and we need more individuals who are interested in researching in this space.

Jerry Hoepner: Yeah, that's great to share. And hopefully there are some students and professionals out there that are thinking about that so definitely need that. Well, I'm going to change gears just a little bit. You've talked a little bit about depression and other mental health issues a little bit, isolation that occurs not only with aphasia, but with mci and dementia. I think we're all starting to get a better idea of our roles as speech, language, pathologists, in terms of counseling individuals with aphasia, MCI, dementia, traumatic brain injuries, etc. In re-reading your 2021 paper about counseling, plus I was really struck by how you and your co-authors mapped out this continuum of counseling needs kind of makes me want to do the same for everything so in activities from the first symptoms and diagnosis to the end of life, and I'll refer our listeners to figure one because it's a really eloquent framework for, and timeline for those changes. Will you share a little bit about the development and kind of the purpose of that timeline figure.

Alyssa Lanzi: Yeah, thank you for the kind words that was probably one of the hardest things I've ever done was writing that paper, but we knew it needed to be done for many different reasons, but really to paint the picture that SLPs have a key role from the start all the way to the finish with these folks, and that's really what that figure is trying to highlight is that we can provide both primary and supportive roles to our colleagues from prevention and education all the way through end of life. And fortunately, that figure has really resonated with a lot of people which has been really helpful and I've actually gotten a lot of feedback from clinicians who've been able to use it to advocate for their role in this working with this population and doing support groups and things like that. So that's really great, because that's the whole point of it. But what's unique about this paper is that I work on a very interdisciplinary team of neuropsychologists and geriatric psychiatrists. And it was really interesting to come at it with all 3 of our mindsets for kind of developing this, because everybody has a very different education in terms of these important psychosocial constructs. So a really big shout out to my colleagues, Matt Cohen and Jim Allison, who really also helped me push my mindset of thinking about counseling as much more than just a conversation, and really thinking about counseling, plus as we call it, in terms of everything else right, and that a conversation is only the start of it, and that education and management and advising and referrals, that's all, that's all the big piece of it. So, I think that's why we were able to really round out this figure is because we were coming at it from 3 different disciplines as well, and then being able to go back to okay Well, what's within the scope of practice, of speech, language, pathology. The other thing about this figure is you'll see that the x-axis, the way that we looked at over time was by residential status, not by necessarily MMSE score or MoCA score right, and that framework was very much from my background in life participation approach in thinking about okay, let's think about them on a continuum of like residential needs versus what is their cognitive status on like an impairment type measure. I encourage people to think that way when we think about working with older adults in particular with neurodegenerative conditions, and that not thinking about them as a numerical value in a stage on one type of those measures because I think it opens up our roles, and also shows how hopefully within that figure that you can see that the roles overlap. Right, there's some roles that we start from our first conversation that we're going to continue all the way through the end of life. The other really important thing to consider with the figure, is in our field we have a really strong understanding of like language milestones in pediatrics, right? But what we don't have a really good strong foundation is, is understanding what is typical aging right, and our role in supporting healthy aging as well. Just as we support language development in pediatrics. So that's a big piece of this figure and a big piece of the counseling article is that we have a major role like we do in language development in healthy aging development as well, and that we can do a lot to support healthy aging and prevention just like we do in language development of kids, and also like we do like with the FAST acronym for stroke or with concussion protocols and management, we just haven't, yet kind of adapted that approach to aging, and that's what hopefully this figure gets us to start to think and talk about as well.

Jerry Hoepner: I think it definitely does. And I really like that analogy or metaphor comparison between the developmental milestones, because I was thinking that as I was looking at the figure, this is really similar. It kind of reminds me of, like the norms we looked at when we were in child phono or child language development laid out in the same kind of framework. So, I think that's something that is really comprehendible by the average SLP, and I think that's helpful, and I and I love how you describe x-axis in terms of those descriptions rather than numbers, just so crucial to see the person from that lens rather than as simply those numbers. So.

Alyssa Lanzi: Yeah, in addition to my LPAA colleagues, my early intervention birth to 3 colleagues, or who were the closest with in a lot of ways, I definitely the treatment approaches the in-home approaches. They're in the next group, I would say. That is pretty close to LPAA as well in some ways is early intervention. Birth of 3.

Jerry Hoepner: Agreed. Yeah, that's it. Another really great point. The other thing I really liked about the terms and you mentioned this: I think part of this comes out of the interprofessional kind of nature of development. But when you look at them, sure some of them are, you know, you think. Oh, yeah, that's counseling still, but many of them you don't necessarily wait to. Oh, yeah, that's in my counseling tool belt, and I think it's important for people to recognize those things are a part of that counseling process, and that can make it a little bit more accessible. I mean, we know that from an education standpoint that people are intimidated by counseling, and they feel unprepared and inadequate to carry out those steps. So, I mean just being able to see that on paper and say, I can do these things, I know these things, I think, are a really valuable part of that framework as well. So.

Alyssa Lanzi: And to make sure that when we are describing counseling to our students, we're describing that as well, right, because its such a daunting thing for our students and if we help them in the beginning set up education, it really breaks down some of the common barriers to providing counseling of its daunting and scary. But a support group is one really small element of counseling that's within our scope of practice and our scope of practice does define it really well. I just think that how we describe it in articles is way too specific, and we need to think about it much more broadly and through, like the journal that you're responsible for with teaching and language. And you know we're starting to develop these models which is really helpful as well. But I agree, I think we just need to step outside of our really kind of specific way of thinking about counseling, because once again, then, by having a more broad continuum viewpoint. It really shines through our role. And why we are such key players of the team.

Jerry Hoepner: Yeah, agreed. I mean, we are always going to be the ones who are put in that moment, that counseling moment we have to be prepared and stepped into it so obviously. That's my bias. But I think we always are. Well, this has been a fantastic conversation, and I could go all afternoon, but want to keep this reasonable for our listeners too. So, I want to end on kind of a broad question, just in terms of what's your advice for SLPs and other disciplines, for that matter, in terms of working with individuals, with mild cognitive impairment and dementia, specific to the use of the external strategies and supports, but kind of weaving, counseling into those interactions?

Alyssa Lanzi: Make sure we're really listening to our patients and our families and take that extra second to pause and really make sure they feel valued and heard because especially for these individuals, they're scared. They may not yet see consequences in their everyday life. So, we need to really have a lot of buy in, and good rapport with them from the beginning, because they can make key changes in their life that may actually delay the onset of dementia. But they need to have buy in from you, and they we need to really promote behavior change and to do that they need to feel, listened to and heard. So, take the extra second and make sure you're doing that. Then I think, make sure that we are providing evidence-based approaches around these strategies that we are teaching and the 3-step approach by Solberg and Mateer and the pie framework. All of these, you know, meta-cognitive strategy frameworks. It starts with education, and we need to make sure that our clients have a really big education of what even is the strategy? What are all the components of the different strategy? Why is it they are even using the strategy right? Don't, jump into training the strategy yet, really start with the education and use the teach back approach, and make sure that they can help you in that way and then make sure you also don't view your approach as linear, things are going to change right, and you're going to have to go back a step and go to education. But you know I think functional is key and important, but it doesn't mean that we take away the evidence based, either right. And it's really thinking about how to integrate both of those things, and being honest with yourself and your client if things aren't working, and you need to readjust as well. But if your patient feels valued and heard, then that's the first step, and we need to make sure that we're continuing that step all the way through to the end of the sessions.

Jerry Hoepner: Absolutely agree. Well, again, it's been a fantastic conversation. So really, thank you so much on behalf of Aphasia Access for your time and your insights and hope to see you again soon.

Alyssa Lanzi: Yes, thank you. Please feel free to reach out. And if you ever see myself or my Doc students, Anna or Faith, or my colleague, Mike Cohen, at a conference. Please say hi to us as well. We love talking about our work and brainstorming with others, especially in the LPAA world.

Jerry Hoepner: Sounds terrific. Thank you, Alyssa.

Alyssa Lanzi: Thank you.

Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.

Articles & Resources:

1. Cohen, M. L., Harnish, S. M., Lanzi, A. M., Brello, J., Victorson, D., Kisala, P. A., ... & Tulsky, D. S. (2021). Adapting a Patient–Reported Outcome Bookmarking Task to be Accessible to Adults With Cognitive and Language Disorders. Journal of Speech, Language, and Hearing Research, 64(11), 4403-4412.
2. Lanzi, A., Burshnic, V., & Bourgeois, M. S. (2017). Person-centered memory and communication strategies for adults with dementia. Topics in Language Disorders, 37(4), 361-374.
3. Lanzi, A., Wallace, S. E., & Bourgeois, M. S. (2018, July). External memory aid preferences of individuals with mild memory impairments. In Seminars in Speech and Language (Vol. 39, No. 03, pp. 211-222). Thieme Medical Publishers.
4. Lanzi, A. M., Saylor, A. K., Fromm, D., Liu, H., MacWhinney, B., & Cohen, M. L. (2023). DementiaBank: Theoretical Rationale, Protocol, and Illustrative Analyses. American Journal of Speech-Language Pathology, 32(2), 426-438.
5. Lanzi, A. M., Ellison, J. M., & Cohen, M. L. (2021). The "counseling+" roles of the speech-language pathologist serving older adults with mild cognitive impairment and dementia from Alzheimer's disease. Perspectives of the ASHA special interest groups, 6(5), 987-1002.

Links:

FEMAT Website

FEMAT Open Access Manuscript

Delaware Center for Cognitive Aging Research- Free Memory Screenings

Counseling+ Open Access Manuscript

DementiaBank Open Access Manuscript

DementiaBank- Free Discourse Protocol