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 

Welcome to the Aphasia Access Aphasia Conversations Podcast. I’m Katie Strong, a faculty member at Central Michigan University where I lead the Strong Story Lab. I’m also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Mary Ann Eller. We’ll be talking about incorporating the Life Participation Approach to Aphasia (better known as LPAA) in Acute Care Settings.

Let me first tell you a bit about our guest.

 

Mary Ann Eller, MA, CCC-SLP is the Assistant Manager for Rehab Services in the Speech and Language Pathology Department at Duke Regional Hospital in Durham, NC. She has worked in the Duke University Health Care System since 1989. She specializes in evaluating and treating adults with neurogenic and swallowing disorders in acute care and inpatient acute rehab. Her current professional passions are finding functional, practical, and patient-center approaches to the care of people with aphasia, dementia and all cognitive/communication problems.

 

In this episode you will:

• Receive a permission slip to do secret therapy.
• Hear about how the Life Participation Approach to Aphasia Core Values can be implemented into acute care.
• Understand how implementing the Life Participation Approach to Aphasia supports the Joint Commission standards on health literacy.
• Be empowered to welcome interruptions and struggles and embrace the messiness and the creativity and the joy of using LPAA in acute care.

 

Katie Strong: Welcome Mary Ann! I’m just so excited to have this conversation with you today! And we were just in Durham, at the Aphasia Access Leadership Summit, where you showcased your beautiful city. Thanks for hosting us.

 

Mary Ann Eller: I'm really excited to be here and very honored that you asked me to do this podcast.

 

Katie Strong: Well, I'm excited for people to hear about your thoughts. And as we get started, I wondered if you could share a bit about your own speech language pathology journey, and about the hospital setting you work in.

 

Mary Ann Eller: I grew up in Pittsburgh. I went to the University of Pittsburgh for my undergraduate and graduate degree and then I went to the Shock Trauma Center in Baltimore for my CFY. And that's where I fell in love with acute care, you can't get more acute than that. Then I moved to Durham, North Carolina and I have worked at Duke since 1989, which is 34 years if you're counting. And I started when I was five! It's been a great experience. I've worked mostly in acute care and acute inpatient rehab. When I was new in my career, I loved the excitement of acute care. And I think as I grew older, I fell in love with rehab because I have more personal experiences with being in the hospital and with myself and with my parents. I just saw how important effective communication was at that time in people's lives. And that's what I really want to talk about today.

 

Katie Strong: Yeah, I'm excited for this conversation. And as we dig in a little deeper, tell me how you became interested in applying the Life Participation Approach to Aphasia (LPAA) to acute care settings.

 

Mary Ann Eller: Yeah, this is an interesting story to me. At the University of Pittsburgh, Audrey Holland was there at the time. As people who know her and her work, she is known for being extremely functional. So, I sort of grew up professionally knowing that being functional was the way to go. That was in the late 80s, so the LPAA had not been developed yet, which was around the year 2000, I believe when the impairment-based focus of therapy was recognized as not meeting the mark. It wasn't really helping people where they were at. And so, this LPAA not being a therapy approach, but more of an idea. LPAA is a philosophy of treatment, not a specific treatment approach. So, we could still use the treatment approaches that we knew and were evidence-based, but the philosophy of what we are using them for became more widely known in 2000. So, I didn't know about LPAA until about five years ago, even though I was familiar with being functional. So, in my little isolated world, I wasn't doing CEUs on aphasia because I needed to be a generalist. I had, by that time become a manager in the department and needed to stay up to date on swallowing and dysarthria and cognition. So, I wasn't really in the world of aphasia. So, I continued to do impairment-based therapy for a long time.

 

But I did secret therapy, which I knew is what Audrey would want me to do. And it was, I would do the things that I knew the patient and the family needed me to do but I'd feel a little bit guilty doing it because I knew it wasn't “evidence- based.” And I wasn't doing the, you know, Response Elaboration Training, or whatever it was that I had learned, but I would meet their needs. So when, about five years ago, I went to an Aphasia Access Conference and Audrey was there, and I got to see her again. And she remembered me, which was really an honor. I was validated that the things that I had been doing in just my nature were correct. They were the best thing for the patient. That was really validating. I was always, and I'm saying this for any clinician who's out there listening, to not be afraid. I was afraid that I was doing it wrong. And I had been doing it for many years, had lots of experience, but I didn't want to get around other professionals that were more recognized in the field, because what if I was doing it wrong? Or what if there was a new approach that I didn't know about? And when I got there, it really wasn't that atmosphere at all at Aphasia Access. It was very welcoming, and it was very validating. And I realized that a lot of my instincts were right.

 

Katie Strong: I love it. So, it's almost like the LPAA shone a light on that secret therapy, and really validated you.

 

Mary Ann Eller: It sounds so funny that “secret therapy” but it’s really what it felt like. So, I got to bring it out into the open and it was a secret no more.

 

Katie Strong: Yeah, I love it. Well, I mean, obviously, then you feel like LPAA has value. Do you think LPAA has a role in acute care? And how do the Life Participation Approach Core Values apply to this setting?

 

Mary Ann Eller: That was a great thing that I had to work out in my brain. Absolutely, it has a role in acute care. What I was learning about LPAA, when I first started learning, was a lot of information for when the clients were further along down the line. So, they were in the community, and they were participating in their goal setting, and they were deciding, “hey, I want to go back to work.” And that's what the speech pathologist was working on. And those things were wonderful, but that's not the setting I was in. So, I started to think about how these Core Values can apply to acute care. The Core Values, I'll read some of them right here, there's five of them. The first Core Value of LPAA is that “the goal is an enhancement of life participation.” So, when you're waking up with a stroke, and aphasia, the life you have to participate in is in a hospital bed. So yes, that applies. Number two, “all those affected by aphasia are entitled to service.” You are entitled to service if you have aphasia, in addition to swallowing and dysphagia services. That's important too, but you are entitled to service if you have aphasia, you don't skip it in acute care. Number three, “both personal and environmental factors are targets of assessment and intervention.” That is a lot of what I do in acute care with LPAA, I am looking into the environment, which includes the nurses and the nursing assistants, and the family, and the call bell, and the bathroom and all of those things that are in the environment. And that is what I am targeting and that's LPAA. Number four, “success is measured by documented life enhancement changes.” It is an enhancement of a person's life, like if they can use a call bell and get to the bathroom. If you've ever been in that situation, that is the most important life-enhancing really, lately. And then number five, “emphasis is placed on availability of services as needed at all stages of life with aphasia.” That includes the beginning, so yes, it absolutely has a place in acute care.

 

Katie Strong: I love this. I feel like it's preach, you're preaching it girl. You know, it's just, I mean, I think for many, many years, we've thought about, “oh LPAA is just something that you do after you try everything else.” I love hearing you talking about bringing it into acute care just right from the beginning, it’s so important.

 

Mary Ann Eller: If I could say one more thing, I think the weight of responsibility for setting goals is one of the things that's talked about in LPAA. You want to be partners with the person who has aphasia in goal setting. And of course, you want whatever it is that they want to work on to be the center. However, when you wake up with aphasia and you have no experience with it whatsoever, you can't expect someone with aphasia to be able to set their goals of communication at that moment. So, I think that that's the biggest difference with the approach and thinking of LPAA. In acute care, the responsibility is more so on the clinician and the family to get to know the person and what's important to him and set the goals at that stage. Slowly educating and then giving the responsibility over to them as soon as possible to set the goals.

 

Katie Strong: Beautiful, beautiful. We talked about it earlier, the importance of being able to communicate effectively in your health care setting. And one consideration for LPAA is that JCAHO, or the Joint Commission has placed a real high value on environments that support patients and having conversations about their health care to understand their health status and engage in their own health care decisions. Could you talk about how LPAA supports the Joint Commission standards on health literacy?

 

Mary Ann Eller: Yes. And let me just say, for people who aren't familiar with hospitals, the Joint Commission is the regulatory board that comes in once every two or three years, and they tell you whether your hospital can continue to operate or not. So, the standards are very, very important. And I'm going to read you one of the standards that they have, and I think every speech pathologist is probably going to be, as they hear the standard, is going to be like “Well, wait, that's not really happening with my people with aphasia”. And I think that's where a real opportunity lies for us. You, I think, are attaching the standards?

 

Katie Strong: Yes, I'm going to. I'll put them in the show notes so listeners can check them out and we'll have a link to the standards there.

 

Mary Ann Eller: Okay, so one of the standards says that patients are expected to receive information about their care so they can make an educated decision, be listened to by their providers, and the hospital is required to identify patient communication needs and provide services to meet them. And so, you think about maybe someone who speaks another language, or maybe someone who is deaf, or someone who is illiterate. And those are all most of the things I think that people think about when they read that standard. But this also includes people with dementia, and people with aphasia, because you have that diagnosis, doesn't mean that you're unable to communicate. It means that you need special supports to be able to communicate and a lot of healthcare providers are not aware that speech pathologists can offer that support. And so, I think that's where a lot of our work lies.

 

There's a quote that I like to use in my talks, it's by George Bernard Shaw, it says, “the single biggest problem in communication is the illusion that it has taken place.” And think that there are so many boxes that are checked in acute care, like “the nurse provided education on stroke, and how to prevent further strokes.” And they check the box, and they do a great job, I'm not getting down in that. But if you have aphasia, you did not receive that communication, she communicated it to you. I communicated something to you but that doesn't mean that you received it. And people when they have a stroke, or a brain tumor, whatever it has that produced aphasia, you and their families are in a state of shock, so you're not able to absorb the information. So, I think that that is one thing we need to really be cognizant of when we are trying to change the culture of a hospital.

 

Katie Strong: Absolutely. And I was thinking of some of the materials you sent me to take a look at in preparation for our conversation today like that Joint Commission talking about communication requiring that two-way process of expressive and receptive or receiving and understanding, you know. That information is really important, very important.

 

Mary Ann Eller: Yeah, yeah, absolutely.

 

Katie Strong: And I think sometimes too, we know that our clients or our patients that we are working with take more time to be able to understand what's going on with them and their health care.

 

Mary Ann Eller: Yeah, and a lot of times what we use to make that happen isn't really that complicated. It often involves slowing down, turning off the TV, sitting down at eye level, and stopping periodically to say, “did you get that?” and “repeat that back to me.” And that's for everybody, not just people with aphasia. It seems like it should be common sense, but it's really not. People in hospitals, especially in the last three years, have been under a lot of pressure and have to do a lot of things. And so, communication can often get lost.

 

Katie Strong: Absolutely. All this sounds great Mary Ann, but what do you think might prevent some SLPs from embracing LPAA framework in acute care settings?

 

Mary Ann Eller: That's such a good question because I went through that for 20-30 years, I guess. I didn't embrace it because I didn't know about it. I think that one of the biggest things is being at the Aphasia Access Conferences. I loved it and I loved having the honor of presenting last time we had it, but I just thought, “gosh, I want this to get to people who don't know about it.” Because there are tons of clinicians who maybe hear about it in grad school and perhaps, they go out to their placements and the supervisors maybe don't know about it. And so, they don't put it into practice, or they don't know exactly how to integrate it into practice. I think that number one, that's the biggest thing that's going to prevent clinicians from using it is because they don't know about it.

 

I think the other thing is that the “secret therapy” that I talked about is realizing, and if nobody's given you this permission slip, I am giving it to every clinician out there. Here is your verbal permission slip, please treat the communication elephant in the room. Whatever it is with somebody in acute care. If they are struggling to order a meal, if they are struggling to call the nurse, if they're struggling with telling you something or talking to the person beside the bed, that's what you work on. Work on what is right in front of you. You don't have to complete an entire Western Aphasia Battery. You don't have to make sure that you have them name 10 things. Those things all have a place, and I think we can fit evaluation and treatment in, but please deal with the person who's right in front of you, not the agenda that you brought into the room. So, there's your permission slip. I think people don't know how to document it and that's okay. I have a couple suggestions a little bit later when I talk about that. I think they feel it takes too much time and it really doesn't, I think you can do these things instead of the big agenda that you brought into the room. I think these people are going to be dealing with aphasia for a long time. And so, they will get to a speech pathologist who will do the more standard evidence-based treatments when they're appropriate. I'm not saying they're never appropriate, sometimes they are. But in my experience of 34 years, a person in acute care with aphasia needs a ton of education, a ton of successes, and just a lot of validation that here's your recovery process, here's what's going to happen. They are in shock, and they don't know how to deal with things, and I think we are the ones who are speaking to that. Everybody else has their silo that they're speaking about with their blood pressure and their arm and their leg and all of these things. But communication is the soul of a person and I think reassuring those sorts of things and giving them successes at that stage is really vital. So yes, that's your permission slip.

 

Katie Strong: Yeah, yeah, received. And we're going to make lots of copies of that permission slip and mail them out to everybody. So, you touched on this a little bit, but we'd love to hear some ideas that you have about how to incorporate LPAA principles into acute care.

 

Mary Ann Eller: Here are some practical things. Honeycomb Speech Therapy is a great service that sent out or made available some free checklists for different settings. I downloaded one of those and so that's a good place to start. So, there's, I'm looking at it now, the Functional Needs Checklists by Setting and looking through using call light, using the menu, asking medical questions, and following safety precautions. I think as a clinician, starting to think through your aphasic patients in acute care by communication need versus impairment.

 

The other thing I'll say that's a really good way to incorporate this is whatever templates you're using in your electronic medical record. The way that we have done ours in the past has been by impairment because that's how we're trained. “How can you talk?” “How can you comprehend?” “How can you read?” “How can you write?” And in our brains we're pulling it together and we're knowing how this might affect their ability to use the call bell. But I think using a table or a checklist that automatically makes you have to pull it together and give a set of supports that will enable the person to do that or not, depending on how severe they are, is one way to make sure that that you incorporate LPAA.

 

Katie Strong: I love that. And I love the shout out to Honeycomb and Sarah Baar. We actually had her on the podcast. It's been a couple of years, but I think it's Episode 57 if listeners want to check out a little bit more of hearing her thoughts. But I agree, helping yourself be a little more strategic about how you're going to address all of these areas. Because, as you said earlier time is I mean, time is essential everywhere but in acute care, it's really the big commodity.

 

Mary Ann Eller: Yup. Another thing is to welcome interruptions because when you’re in acute care you will be interrupted. And the nurse will come in to give meds and I think to go into a patient's room open for whatever happens. So that when the nurse comes in and gives meds, you are demonstrating some supported communication techniques. So maybe you always have a pad of paper and a pen or a whiteboard. And so, you write down the medicine, and then you ask the nurse, “what's the medicine for?” and they say, “blood pressure,” and then you write down blood pressure, you show it to the patient, and they nod. And then they have experienced what JCAHO was asking us to do, which is communicating what's happening to them. And not only has that happened, but you also are educating the nurse to see how successful that communication is when you write down a word, for example. Welcome the interruptions to show communication.

 

I've had doctors come in and explain what's going to happen next for their discharge and I write that down or slow it down or whatever the support needed is. Same with social work. There are so many opportunities to use functional communication and LPAA in acute care. As I was thinking through this question, one of the most effective ways that I remember using it in my recent past is with a patient that had Wernicke's aphasia. And it was at the height of COVID, so everybody had masks on, including her. And she was very, very fluent, and she could not understand spoken language, I mean, lots of it. She could walk, you know, and that made all the more frustrating for her, they'd say, “you can't walk by yourself, you need to sit down.” Well, she didn't understand what they were saying. So, she might say in return, “fine, how are you?” And so, people thought that she was crazy. She was not crazy, she had Wernicke’s aphasia. She did not understand spoken language. And so, when we finally got the consult after the woman was put in a Posey Bed, I was able to tease that out. I was able to educate the staff on “hey, if you do X, Y, and Z,” which included writing down what you're saying, a key word, then she can look at it, she can look at the context, and she can follow your directions. And it was the biggest difference. I mean, speech pathologists really do a great service for people with aphasia in acute care. So, those are just a couple of things that I thought of.

 

Katie Strong: I love it. I love it. Well, you alluded to it earlier, but I'm going to invite it back into the room now. That is the elephant in the room, hello dysphagia. How does an acute care SLP balance the needs of the patient with dysphagia and also support communication issues as well?

 

Mary Ann Eller: That is a good question, and I don't find it difficult at all to do that. And the reason I don't find it difficult is because I've embraced some messiness in my evaluations.

 

Katie Strong: Tell me more!

 

Mary Ann Eller: And sometimes that's hard to do, especially early in your career. Or if you are a very focused kind of Type A organized person, which a lot of speech pathologists are and that's why we're so good at our jobs. But it is a little bit messy. And what I mean by that is, you can easily do both at the same time. You can evaluate dysphagia and you can evaluate their language. You can have them following commands with your clinical swallow even though you're not saying hold up two fingers and point to the window or whatever you were taught. You can say, “hey, would you pick up that glass of water?” without pointing to it and see if they do it. You can ask them open-ended questions and closed-ended questions to see what kind of language they have. While you are writing your recommendations on the whiteboard, you can have them read it back and assess their reading in that way. There's lots of things that you can do to assess both at the same time. So, it really doesn't take that much more time, it just takes a difference in how you think about it.

 

Katie Strong: Powerful stuff. Yeah. I love that it's not, doesn't have to be mutually exclusive, and couldn't and shouldn't be. I'm sure our listeners would be interested in exploring some of the resources that influenced your thinking about this topic of LPAA. Would you be willing to share a few?

 

Mary Ann Eller: So, one that I read 8 or 10 years ago was by Lyn Turkstra. And I talked with her about this at a conference once and it was really interesting. It's on Inpatient Cognitive Rehab, Time for a Change. I can't remember the year that she published it.

 

Katie Strong: I think I’ve got it here, it's 2013. And listeners we’ll have all these resources in the show notes for you, too. But yeah, it's a 2013 publication.

 

Mary Ann Eller: I talked with her about it at a conference once and she said that she really kind of had a hard time getting it published because it was so against the grain at the time. And basically, what it was is inpatient rehab, for those of you who don't know, is after acute care oftentimes. So, it may be within a week of having a stroke and maybe you stay for two weeks at this point. So, within the first month of having a stroke and having aphasia. So, Lyn Turkstra’s thinking was, we're programmed and taught to do things in a world of rehab that used to be months long and now it's only a couple of weeks and now earlier than it used to be. So hey, why don't we focus on some other things like education and laying the foundation and making sure that there's a therapeutic alliance with speech therapy so that the person knows, you know, down the line, this is the person you're going to go to and have a good experience with that. That was the first paper that got me thinking.

 

And then after I started going to the Aphasia Access a few years ago, I looked up an old paper of Audrey Holland’s that was Early Aphasia Management and Acute Care. And that was in 2001 that she wrote that. That talks about a lot of the same things, is that we don't have to do an entire Western Aphasia Battery, but let's take care of their actual needs in acute care.

 

I loved Roberta Elman’s CAPE checklist and I felt kind of dumb when I went to Aphasia Access and I started asking people, “hey, I'm in acute care, and I'm thinking about XYZ.” And they said, “oh, well, that's what CAPE does.” And I was like, “what's CAPE?” I just didn't know. And CAPE stands for, it's a checklist of four interventions, C is connect with the person with aphasia, A is augmentative communication, P is partner training, and E is education and resources. Basically, it's if you do these four things in the very early stages, then you've got your bases covered. And it's like, Oh, that's awesome. I wish I would have thought of that. I'm just glad she did.

 

Katie Strong: Before you move forward, I just want to say thank you for being so open about feeling uncomfortable that you didn't know things. And I guess from my aspect, I think it’s also for maybe listeners who are not practitioners but are researchers putting frameworks out there. We really need to be better at getting our work out to the people who can implement it, you know? So, I mean, I think it takes both sides of things to really get it. You can have beautiful, evidence-based work but if it doesn't get into the hands of the practitioners who are using it, it just doesn't matter. So, thank you for being so open about that and I hope that, I'm thinking that it probably resonates with a lot of the listeners here too. That you know, we don't always know what we don't know.

 

Mary Ann Eller: Yeah, yeah. Thank you for that. You know, it's funny, because even yesterday, I have a lady who has been in the rehab unit for a really long time, for a variety of reasons. But she has pretty severe aphasia, and I was looking over these notes for this conversation today and I realized as I went through the CAPE that I didn't provide her with any educational resources. It’s like, wait a minute, I didn't do this. And it's just, you get caught up in the day-to-day things, even if you're invited to do a podcast about it. And sometimes it's just one of those things. Nobody's perfect. But I think if we can have some standards in front of us and go back to them, that we're going to do a great job, that the frameworks are out there. And I guess the other paper I wanted to mention was also by Roberta Elman it’s, “Are we missing the forest for the trees?” and I love that.

 

Katie Strong: It’s a great title.

 

Mary Ann Eller: Yeah. It was like, okay, we're doing all this stuff for aphasia but the person can't communicate when they get home. And I really, really liked that stark reality and I looked back on a lot of my patients, and I'm like, “ wow, I did a great job while they were in rehab.” But I wonder how they're doing at home because I didn't really work with her husband that much. And that is a failure on my part. And, you know, we do better the next time. But those are the things that really influenced how I thought about this.

 

Katie Strong: Fantastic. Well, we'll make sure to have links to all of those articles and resources in the show notes. Mary Ann, you've been thinking about applying LPAA in your acute care work for a while now. Do you have any ideas that you could share with us that you have in the works in your own practice?

 

Mary Ann Eller: Yeah, I have a couple. Well, one of the things that I did and it's a very specific intervention, is I developed a Picture Menu because I was doing a lot of work with dementia care and nutrition because of an initiative in our hospital with geriatric care. And dementia is a place where nutrition is often overlooked because they're usually in acute care because maybe they fell or lots of reasons. And the tray ends up getting put in front of them but because of their dementia, they don't eat it and then they start getting sicker and sicker. So, because of that, I realized, even if they could eat, they might not want the tuna fish sandwich that's in front of them, because that's the standard tray that you get if you don't order your meals. And they don't order their meals because they can't communicate. You know, it's not just dementia, it's people with aphasia. And our menus were extremely word based. They were great but they had a lot of words to them. And if you can't read it for a variety of reasons, maybe you're blind, maybe you speak a different language, maybe you're illiterate, all different reasons. Then the person comes up to your bed and takes a really great bedside order like a waitress on an iPad, but again, all words. I teamed up with some people at my hospital and we went down to the kitchen, and we took pictures of all the items on the menu, and we put it on a big giant, laminated menu that we bring to the bedside and have them point to it. So yeah, and I've trained the patient menu techs, the people who actually take the orders, to use it. So, it's a work in progress because it's an extra step but yeah, it's really useful for the people that can use it. So, that's one thing.

 

The other thing is the idea that I had, and it is not flushed out at all. I'm just gonna like put it out there and if somebody wants to steal it and do it before I do, feel free. But in my hospital, which is Duke Regional Hospital, it's part of the Duke System, but it's a smaller community hospital made up of about 380 beds. A couple of brilliant speech pathologists teamed up, and developed a trach team. And the trach team consisted of a pulmonologist and a respiratory therapist and a PT and an OT and the main players that revolve around trachs. And through a lot of hard work, they were able to do some culture change and practice change and get these patients with trachs taken care of through weekly rounding and all sorts of focus changes. And I thought, why can’t we do that for people with aphasia? Or communication, just have a communication team? And I don't know what it's going to look like yet but why can't we get the players? I mean, maybe it's just the speech pathologist. But identify in my hospital through speech pathology consults, okay, here are the most vulnerable people to not get their needs met in acute care because they have global aphasia or severe dementia and they're on our caseload. Let's put them on a special list and let's give them special attention in some way and have a communication team. And as you round on these patients, you let the rest of the hospital see you doing this. You let them see how to intervene with these people. And it catches on so that they then learn these techniques, whatever they may be. We act as advocates for these people that are particularly vulnerable. Again, I don't know how it's going to work yet, but that's an idea.

 

Katie Strong: Yeah, I love it. And I would love to hear how it unfolds, so.

 

Mary Ann Eller: Me too.

 

Katie Strong: Yeah. Okay. I'd like to take it a little bit further because you're the manager of a department, right? So, talk about maybe a few tips in transitioning to an LPAA focus with a staff that isn't particularly familiar with that philosophy.

 

Mary Ann Eller: That is a really great question, and there’s not one answer. And I'd love to bring in your friend, Natalie Douglas, in implementation science to speak on this. I'll tell you what I did and then I'll tell you what a bigger department might do. I have myself and five full-time speech pathologists, We all have varying levels of familiarity with LPAA and we all have been practicing in some form or fashion. So, I did an anonymous survey, and I asked some questions like, “how comfortable are you seeing people with aphasia?”, “have you ever heard of LPAA?”, “how comfortable are you using supported communication techniques?” And I did it anonymously because everybody is not going to want anybody else to know that they're not comfortable with it. So, even if there's just one person on my team who doesn't know LPAA or who isn't comfortable, I don't know who it is, I have an idea, maybe. But I'm going to put it in front of everybody and say, “hey, there's one person on our team who's not comfortable, let's focus on this.” And so that's what I did. My team is fantastic and they are very open.

 

And so that's what we did. We had some focus teaching on it we watched some of the Aphasia Access videos on supported communication and LPAA. And then we changed our templates to include some tables that I talked about before that have the checklists on them. I think though, and I had a conversation last night with Kim Irby who is the interim chief over at ‘Big’ Duke who has like, I don't know, 40 or 50, speech pathologists. And I asked her, I said, “what have you used with bigger departments?” And she had a really good point, she's like, “you know, education alone is not enough, it’s not going to produce a behavior change. People are going to think their behavior is changing and they're going to think, through doing LPAA, and they might be. But really, you have to have people be able to be in the moment with a coach and do it together.” That can be tricky. I mean, you've got people with varying levels of comfort, varying egos, varying all sorts of things. And so, she and I thought, you know, I think probably the most practical way would be to educate and then pair people up together as peers and see a person with aphasia. Try things together then come back and let’s all talk about it. It's not, “hey, I'm going to go with you as your boss and make sure you're doing this right.” That would be like totally not cool. So, I don't know, again, I want Natalie to tell me how to implement this.

 

Katie Strong: We all want Natalie to tell us what to do, for sure. But I love this idea of learning together, right? That you're not imposing “this is what you have to do.” But really, you know, because I do think that the LPAA approach takes your own style...Each person delivers it in a different way, right? And it's different with each patient that you're with because it's personalized.

 

Mary Ann Eller: Absolutely. And you can’t teach that. It’s not an agenda, it’s

an attitude and an openness, armed with the goals that you have, and armed with the core values of LPAA.

 

Katie Strong: Yeah, I do really love and thinking back to the Turkstra article you were talking about and just that importance of therapeutic alliance with our discipline, right? So that then later on, they think about speech pathology as a positive resource to help. Beautiful. Okay, Mary Ann, as we wrap up, do you have any final thoughts you'd like to share with our listeners?

 

Mary Ann Eller: I want them to remember the permission slip I gave them. I didn't give it to them, Audrey Holland gave it to them in 1989. Okay. And we're carrying it forward and there is a permission slip to work on the communication elephant in the room. Whatever it is, that is your goal. I think, I guess in my mind, early aphasia intervention should be guided by the person with aphasia’s need in the moment first, then the bigger picture. I go in with a really, really loose agenda and I'm open to anything. I welcome interruptions and struggles and I think that that is the messiness and the creativity and the joy of using LPAA in acute care.

 

I've been a patient in the bed for health reasons and I've sat next to my parents in the bed. I think that once you do that you realize how not only practical but necessary it is that we change our focus on communication at this stage of recovery. Because you don't care what the doctor knows, you care that the doctor cares and can explain it to you in a way that you can make your decisions. And that's the power we have. We've all had health care workers and seen them who have been outstanding and who have been terrible. I think we obviously want to be outstanding. And it doesn't take a lot to be outstanding when you know what your job is, which is to help the person with aphasia to communicate and to be understood in whatever supported techniques that we have and that is our job. And I think that is an amazing privilege. Really, I look at it as a privilege. We are inserting ourselves into a person's worst day and we are the person that walks in there and has the power to help them do two of the most important things, eat and communicate.

 

Katie Strong: I agree.

 

Mary Ann Eller: So, I think that those are pretty powerful and I think that it's a real privilege to be able to do that.

 

Katie Strong: Thank you, thank you. I feel like you've just given us some gold that we need to really admire and take out and show off. Right? That we need to let all of it shine and really take these important pieces about changing our practice in acute care. And really helping people be able to understand and have conversations about their health care so they can participate in really important conversations that impact their life.

 

Mary Ann Eller: I hope so, I hope so. And I'm not a researcher, I have not done papers and you know, all of those kinds of things. And I used to feel a little bit intimidated by that. It's like, well, do I really have anything to say? And I realized as time goes on, it's like, yes, absolutely. And I want to really reach out to the clinicians that are listening to this. Please use your voice. Please reach out for partners. If you hear somebody at a conference or you reach out to me if you want to, if you're listening to this. Just grow your knowledge and grow your ability to this great job that we have.

 

Katie Strong: Thanks for a real, practical and inspirational conversation.

 

Mary Ann Eller: Well, thank you for letting me have it.

 

Katie Strong: Thanks, Mary Ann.

 

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

 

Guest Contact Information

 

Email Mary Ann at [email protected]

 

Resources

 

Aphasia Access LPAA Training Videos (LPAA 101, LPAA, Core Value, Communication Access- Fundamental Techniques) https://www.aphasiaaccess.org/videos/

Chapey, R., Duchan, J. F., Elman, R. J., Garcia, L. J., Kagan, A., Lyon, J. G., & Simmons-Mackie, N. (2000). Life Participation Approach to Aphasia: A statement of values for the future. ASHA Leader, 5(3). https://leader.pubs.asha.org/doi/10.1044/leader.FTR.05032000.4

Elman, R. J. (2014). Aphasia intervention: Are we missing the forest through the trees? 44th Clinical Aphasiology Conference, St. Simons Island, GA. http://aphasiology.pitt.edu/2529/

Elman, R. J. (2020). C.A.P.E.: A checklist of four essential and evidence-based categories for aphasia intervention. Chapter 2. In A. L. Holland & R. J. Elman (Eds.) Neurogenic communication disorders and the Life Participation Approach: The social imperative in supporting individuals and families (pp. 21-52) Plural Publishing.

Holland, A. & Fridriksson, J. (2001). Aphasia management during the early phases of recovery following stroke. American Journal of Speech-Language Pathology, 10(1), 19-28.https://doi.org/10.1044/1058-0360(2001/004)

The Joint Commission: Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals. Oakbrook Terrace, IL: The Joint Commission, 2010.

Turkstra, J. S. (2013). Inpatient cognitive rehabilitation: Is it time for a change? Journal of Head Trauma Rehabilitation, 28(4), 332-336. https://doi.org/10.1097/htr.0b013e31828b4f3f

 

 

If you liked this episode – more listening…

Additional Aphasia Access Conversations Podcast episodes relating to the topic of acute care and applying LPAA to different settings.

 

Episode #57 Patient-Centered Home Programs Across the Continuum of Care for Individuals with Aphasia: A Conversation with Sarah Baar.

 

Episode#99 Communication Partner Training for Health Care Professionals with Dr. Jytte Isaksen

 

Episode #38 Broadening the Role of the SLP in Acute Care Assessment: A Conversation with Robyn O’Halloran

 

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

Welcome to this edition of Aphasia Access Aphasia Conversations Podcast. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am today's host for today’s episode that will feature Dr. Jacqueline Laures-Gore. These Show Notes accompany the conversation with Dr. Laures-Gore but are not a verbatim transcript.

 

 

Dr. Jacqueline Laures-Gore

 

 

Dr. Laures-Gore is a professor in the Department of Communication Sciences and Disorders at Georgia State University in Atlanta, where she directs the Aphasia and Motor Speech Disorders Laboratory. Jacqueline's work spans topics in aphasia and motor speech disorders. For the past several years she has investigated the relationship between integrative health practices and aphasia rehabilitation.

 

 

In today’s episode with Dr. Laures-Gore you will hear about:

1. the relationship among stress, resilience, and coping skills,
2. recognizing and measuring physiological stress and perceived, self-reported stress,
3. the interaction of stress, anxiety, and fear, and
4. the role integrative health practices can have in daily life and in aphasia rehabilitation.

 

 

Dr. Janet Patterson: Welcome to this edition of Aphasia Access Conversations. Today I am delighted to be speaking with my friend and colleague, Dr. Jacqueline Laures-Gore. Jacqueline is a professor in the Department of Communication Sciences and Disorders at Georgia State University in Atlanta, where she directs the Aphasia and Motor Speech Disorders Laboratory. Jacqueline's work spans topics in aphasia and motor speech disorders, including investigating working memory in persons with aphasia. In motor speech disorders, she and colleagues examined topics such as intelligibility in people who have dysarthria, and speaker and listener perceptions of speech in persons with dysarthria. She is a co-creator of the Atlanta Motor Speech Disorders Corpus, which is a comprehensive spoken language dataset from speakers with motor speech disorders in Atlanta, Georgia. This collaborative project gathered speech samples from non-mainstream, American English speakers residing in the southeastern United States in order to provide a more diverse perspective of motor speech disorders.

 

For over two decades, Jacqueline has been interested in how personal, physiological, and psychological factors affect people with aphasia, and aphasia rehabilitation. She has investigated topics such as stress, depression, mental health concerns, and how to assess their presence and influence. With her colleague, Ken Rice, she recently published the Simple Aphasia Stress Scale in the Journal of Speech, Language, and Hearing Research. The SASS is a single item self-report measure of acute stress in adults with aphasia.

 

Dr. Laures-Gore’s work also investigated the power of laughter, mindfulness, meditation, spirituality, yoga, and integrative health practices for persons with aphasia. I am pleased to welcome Jacqueline to Aphasia Access Conversations today and look forward to talking with her about her clinical and research experience considering how integrative medicine can influence a person with aphasia and their rehabilitation, and the powerful effects that mindfulness, laughter, and yoga can have on life outlook, participation, and rehabilitation.

 

Welcome, Jacqueline. I appreciate your time today in talking with me about these fascinating and important topics.

 

Dr. Jaqueline Laures-Gore: I am very happy to be here, Janet, and very honored. I look forward to a very lively and fun conversation with you today.

 

Janet: Jacqueline I would like to start by asking you about the aspect of your aphasia research interests that includes important topics such as depression in persons with aphasia, stress, laughter, and spirituality. In fact, I believe you are among the first to write about the value of integrated health practice in aphasia. How did your career path and learning curve about aphasia take you to this line of inquiry?

 

Jacqueline: There's quite a bit of time that I spent with people with aphasia through my clinical work, and even early on before I became a speech-language pathologist and worked in a geriatric setting. There was a gentleman there who had aphasia and we did not really know how to communicate with him. He was very isolated. He sat by himself most of the time, was very alone. That image of him and what he must have been experiencing, and our inability to really know how to communicate with him, stuck with me over the years and definitely drove me toward a career in speech-language pathology, and specifically working with people with aphasia. Then, after becoming a speech-language pathologist, and working full time in rehab settings, it became very obvious that people with aphasia were more than the problems with phonology and semantics, and so forth. There was a bigger picture here, and there was oftentimes frustration. I watched and tried to provide some help to reduce frustration during some of the language tasks that people would be doing in clinic. But as I tried to look in the literature about well, what do we know about this frustration? What do we know about stress and the language system? What do we know about ways to facilitate language through the stress mechanism? What do we know about relaxation, and its effect on language, and so forth. All of those things really seem very under-explored in our aphasia literature. My curiosity definitely drove me to looking then, into a Ph.D., and having some great mentors who encouraged me to continue down this path of the fringe group. There weren't a lot of people who were very interested at the time in stress and thinking about what happens with the language system, or of mindfulness, meditation, and so forth. By far, I'm not the first to consider these things. McNeil and Prescott had a meditation paper, I think it was back in the 1970s. Cynthia Thompson had a paper on hypnosis, I think it was in the 1980s. There have been others, too.

 

Janet: I'm listening to you and thinking, we probably all had some sort of thoughts about this, as we see patients. I'm envisioning the patient that you saw in the geriatric center, we probably all have had patients like that. I'm impressed that you didn't forget, that you kept that in your mind as you moved forward. I think many of us didn't know what to do with it, didn't know how to think about this. Other things present themselves and we get busy with our worlds and our learning about phonology, or semantics, or syntax. It's hard to remember. I'm glad that you remembered and also, that you were brave enough to stay out there on that fringe, because not everybody is that brave.

 

Jacqueline: Oh, it's hard! It has been hard. It's gotten easier now, and hopefully, it will be easier for the next generation of researchers on this topic. Definitely my longtime collaborator, Rebecca Shisler Marshall, and I had difficulty getting things published. Thinking too, about research design, and approaching the topic with this particular group of individuals with communication disorders, it's a unique population. There's still a lot of growth regarding research design and establishing clinical trials, and we're just at the early phase of really investigating this.

 

I love that you were pointing out that oftentimes people forget that first person that they encounter with a specific communication disorder, and in this case with aphasia. I was 17, and I'm a few years older than 17 now, but I think, though, that for some individuals, there's a catalyst. It could be a personal experience, I hear lots of times when we have students coming through our program, “Oh, I had a family member who (fill in the blank) and had to have speech therapy”, or “I myself had to have some kind of speech therapy, and that's why I want to do this”. For me, at least, it was this individual that I was tasked to care for, and not really knowing how to care for that person. Definitely an emotional component there, and a feeling of responsibility.

 

Janet: I have visions of some of my patients when I was first starting out, boy do I wish I could have a do over!

 

Jacqueline: Oh yeah, obviously, I hear you.

 

Janet: This leads me to my next question. Your research has investigated some of the challenges that all of us, including persons with aphasia, experience such as depression or stress or mental health concerns, or coping with life's challenges, whether they're small challenges or large challenges. These words and concepts, I think they appear commonly in our conversations, and while people may believe they understand their definitions at a broad level, I believe that that may not be the case when we consider them in the context of treating our clients who have aphasia. How do you think about these concepts as they relate to persons with aphasia and their family members? And to our treatment programs? Could you give us some sort of guidance about how we might define and use these terms in our clinical work?

 

Jacqueline: Let's start with stress. Something that I have been talking a lot about lately, and especially with my doctoral student right now, is defining stress, defining anxiety, defining fear, and the differences between those three. When we think about stress, stress is really that threat in the moment. There are different ways in which we respond to that in-the-moment threat. One way is physiologic, and we have two biological arms of the physiologic stress response. One is the sympathetic adrenal medullary system, and the other is the hypothalamic pituitary adrenal axis. The first one, the sympathetic one, or the SAM, shows up with our heart rate and sweating, changes in our digestive system, and pupil dilation. The other one, the hypothalamic pituitary adrenal axis, that one will show up more with the changes in ACTH [adrenocorticotropic hormone] and downstream cortisol. All of those, though, have different effects on our body, and we can measure them with different techniques.

 

The physiologic stress response is adaptive, and stress is not always a bad thing. From an evolutionary perspective, having that stress response has been very beneficial for us, as humans. Now, when that stress response is consistently engaged, then it becomes problematic and oftentimes can become some type of illness or disease. In the short term in helps us to adapt to a potentially negative situation.

 

The other stress is more of a perceived stress. Perceived stress is the perception that there is a stressor, there is something in my environment that is creating this feeling of dis-ease. That perception of stress is reliant also on whether you feel you have, or you have coping resources. Do you have the support around you to help you deal with this stressor? For instance, do you have the financial means to help yourself, and some people rely on religious practices or spiritual practices to help them cope.

 

Anyway, so we have that self-perception of stress, and then we also have the physiologic stress, and the two do not have to match. Oftentimes, we can have somebody who reports themselves as perceiving stress and having a high level of perceived stress, but physiologically, it's not showing up. That makes it always a little bit tougher to study stress, and clinically to even assess stress. I'm not sure which is more important. Is it more important to not be perceiving stress? Or is it more important not to be feeling stress physiologically? I don't have the answer to that.

 

One of the things that's very exciting clinically though, is that there are more wearables now that can detect changes in heart rate, changes in skin conductance or skin response. I think that is going to be helpful eventually for clinicians who are trying to determine how stressful a certain situation is as far as a language task or a communication task.

 

We're also seeing more self-report measures of stress. We have the SASS, as you had mentioned, which is an acute measure. It's just one question and it's on a scale. Rebecca Hunting Pompon and colleagues created the Modified Perceived Stress Scale, which looks at stress over the last month, more of a chronic stress assessment.

 

You'd mentioned depression. We're seeing a lot more work in post stroke depression in people with aphasia in the last ten years or so. With that attention to the mental health of people with aphasia, we're seeing more scales that are at least being looked at, to help measure depression in people with aphasia, whether it be modifications of stroke depression scales that are already there but for the general population, or specific to people with aphasia. I see those as becoming more accessible clinically and us figuring out more about what we can be using in the clinic to look at depression.

 

Janet: This is fascinating, and I would love to spend hours talking with you in more detail about some of these measures.

 

In preparing to talk with you, I did a literature search of some of these terms like stress or depression, as they are linked with aphasia. I noticed that there were a few papers on the topic 30 or more years ago, but not many. In the last decade or so, as you mentioned, there has been an increasing number of papers that describe something about stress or depression, or how to measure it, or what to do about it. I think that this is a good trend, and it's certainly consistent with LPAA principles that seek to maximize the life experience of persons with aphasia. That said, I was challenged to draw consistent conclusions from the evidence that I saw. I'm wondering if you could summarize some of the findings from your research and experience and help us place this work in the greater context of evidence informed practice for aphasia.

 

Jacqueline: We know more about depression and functional outcomes, how post stroke depression can have a negative effect on functional outcomes in persons with aphasia. The problem is that the amount of literature is fairly small. Primarily, it's because that in the past, people with aphasia have been excluded from some of those studies. I see that changing now, where there is more inclusion of persons with aphasia. Then when it comes to stress, that literature is really, really just beginning, as far as empirical data to direct clinical care. In my work, what I've been able to show is that there are definitely some correlations, some associations between self-reported stress, and some aspects of discourse. I've been setting, at least most recently, picture description, for instance, or some type of narrative, and then looking at the discourse production to see if there's any kind of association with different aspects of self-reported stress. We found some things but nothing necessarily consistent. There's been some association with pausing, such as filled pause and unfilled pauses. We've seen that perceived stress can be either negatively or positively associated with those aspects of discourse. I think that right now, the evidence is a little unclear about what the effect of stress is on language.

 

I also always want to tell people that we really need to not always think about stress negatively. We need to think too about stress as an adaptive process. It may be that sometimes stress and language work together very nicely, and stress may give language a little boost. There was a 2019 paper that we had out looking at cortisol awakening response and diurnal variation, and we saw some differences between people with aphasia, and people without stroke and aphasia. The people who did not have a stroke and aphasia had a cortisol awakening response, which is that when we first wake up, the cortisol which is always in our body and is that very endpoint of hypothalamic pituitary adrenal axis, it releases glucose in our system and gives us sugar which gives us energy. For the most part, when people wake up, they have a lower level of cortisol. Then about 30 minutes later it starts peaking and then it continues to climb throughout the day. It's thought that that energy at the early onset of the day gives us a little bit of energy to get us going. In that 2019 paper, we didn't see that people with aphasia were following that pattern. That made us wonder if maybe there's an energy source that isn't fully functioning for people with aphasia, or at least isn't fully engaged in people with aphasia, and that could be contributing to language. There are a lot of things with that paper, too, that left us with more questions than answers. I think that's where we're at as a whole, with stress, with depression, with integrative health practices, is a lot more questions than answers still.

 

I do think that there's a sweet spot that maybe I won't, it will probably be maybe the next generation, I don't know if it'll stick around with my generation, or with me at least, but I'm trying to figure out what that sweet spot is for individuals. How much stress is too much stress, how much stress is just enough stress. Also, there's probably a big component of just inter- and intra-individual variability. What works for me, Janet, may not work for you. I think that's when clinical care really takes on that art piece, too, tuning into the person that you're helping and finding out what works for them.

 

Janet: I think you've said that so, so well. One of my fears is that this larger idea of the work that you're doing, people may see it as a bandwagon to jump on without really understanding the work behind it, the data behind it. So hearing you say, yes, we think there are some effects, but there's not enough evidence yet for us to say exactly what, in what way, for whom, all the time, under what conditions. Also bringing the ideas back into the art of the clinical work to pay attention to your patient, not just the responses that they're making linguistically, but also nonverbally, what they're showing you or telling you. Maybe take a step back to talk about, are they having a moment of stress? Or is something going on in their life that can be affecting their performance today? I think that's a good thing.

 

Let me turn a little bit in a different direction, because in addition to talking about and measuring stress and depression, your work is also focused on behaviors that can benefit all of us. Behaviors or activities such as mindfulness, yogic breathing, meditation, yoga. How did you become convinced that these activities can have a positive effect on a person with aphasia?

 

Jacqueline: Well, I don't know if I'm convinced. I am exploring.

 

Janet: Good point.

 

Jacqueline: It is yeah. I'm not convinced. I think, again, that there are differences between people and so that not everybody has a good experience with yogic breathing,  or is it maybe not appropriate for some individuals. Mindfulness can be very beneficial for people who are not necessarily aware of a certain behavior. But at the same time, when one becomes more mindful, there may be other emotions that come up. When you're introducing mindfulness into therapy you have to be aware that there may be some negative parts to introducing that and be prepared for some other emotions that may come up.

 

Stacy Silverman McGuire is a student of mine, and she did a thesis on laughter, yogic laughter. In that paper, we give a little qualitative piece to some of what she had studied and there were some people who just really enjoyed laughing and wanted to have more laughter in therapy. One person specifically commented that there's just not enough laughing that goes on in aphasia therapy. Another comment was that it was just weird; their experience was that this was kind of weird. People have different things that work for them, and some people don't like them. I think what we'll continue to find in this line of work is, again, that individual piece of what may work for some may not work for others.

 

When we look at some of these integrative health practices, many of them have roots in ancient medicines, whether it be ayurvedic medicine, traditional Chinese medicine, indigenous medicines, there's a long, long history. Some of the practices have become more secularized. Some of the practices have, I should say, religious roots to them, and in the western world have become a bit more secularized. For some people that we may be caring for, they may not be comfortable with some of these integrative health practices because of religious beliefs, or they may prefer more conventional medicine. So how's that, clear as mud?

 

Janet: It is more clear than mud, actually. Because it's what you said earlier. I don't think this is a fringe topic any longer, but it certainly is an unexplored topic. It's messy, it's difficult to examine. You talked about your challenges in thinking about research design, for example. And then, of course, there's the personal comfort with any aspect of this. It's not just the person with aphasia, but I'm thinking about if you're a clinician, how do you get to a comfort level where you can talk about mindfulness, or talk about spirituality? If you're not comfortable, then it's probably not a good thing for you to do, because your level of discomfort will spill over onto the client, who will certainly be aware that you're not comfortable talking about this. That may affect the interaction.

 

Do you have any thoughts or any advice or guidance you might give to clinicians as we think about this large, messy topic, if you will, and how we might be thinking about incorporating any of these things into our worlds?

 

Jacqueline: Yeah, I think a really good aspect of all of this is clinician comfort, and thinking about clinician comfort, even getting away from just the standard, traditional model of therapy, where we show a picture, and then we work on naming that picture. When there's been the movement since the late 1990s of the Life Participation Approach to Aphasia, and getting outside of just the impairment focus, and looking at life participation, and so forth. That goes along with A-FROM and all of that wonderful work that people before me have done. Clinicians had to feel comfortable with that, too, of looking at the bigger, broader picture. Now this adds another dimension as well, that I think feeds in very nicely to LPAA, and A-FROM and so forth.

 

When we think about things like meditation, awareness, even just doing something, not necessarily labeling it as meditation, but labeling it, as “Let's just focus on your breath for a moment. Slow down, and just breathe.” You can have a few deep breaths, and help that person get back into a state where maybe they are not over aroused with their stress system.

 

As far as the religion and spiritual aspect, it's part of one's culture. As we work with people who are culturally diverse, we are as speech-language pathologists, really responsible for becoming more comfortable with acknowledging all of the aspects of culture, which includes religion and spirituality. One's religious practices can have an immense effect on their perspective about therapy, about aphasia, about recovery. That is an area that we're learning more about specifically with aphasia. When we look at religious practices and healthcare in general, and there's a much larger literature out there than looking here, just within aphasia rehabilitation. So, again, I think we're going to be learning a lot more in the coming years about that aspect. But again, it is recognizing an important piece of one's culture.

 

I feel like I'm kind of just like rambling on.

 

Janet: Well, first of all, you're not rambling on. It's a winding road topic, if you will, it's not a straight-line topic. There are perspectives from all over that we have to consider. As you were talking, part of what I began to think was that there's a difference between acknowledging and respecting someone else's beliefs or spirituality or their culture, even if you don't understand it, or perhaps you don't personally practice it or personally agree with it. But you acknowledge it, you accept it, and put yourself in a comfortable position so that you can have a clinical relationship with the patient, and then achieve the goals that you want. That's what it seems to me like you're saying, or you're advocating for?

 

Jacqueline: Yeah, I think the hit the nail on the head.

 

Janet: Let me ask you a little bit more about your work on stress. You talked about two terms, self-reported perceived stress, and then stress, or maybe physiological stress. Could you define these terms a little bit more deeply, and give us some examples of how they appear in the lives of persons with aphasia, and without aphasia?

 

Jacqueline: Well, physiologic stress, again, can manifest differently throughout the body, because of the two different biological arms of the stress response. There is such a huge literature now on all of the stress-related illnesses that we have here and globally, and of course, stressors are different. They can be related to family situations, they can be related to income level, they can be related to health, political issues, wars. There can be the big things. Then that physiologic stress may be engaged with the smaller day to day things, such as a coworker, that is really hard to deal with, or a situation with a spouse or a sibling, or so forth.

 

And then there's the perception of stress, which I think is so incredibly important. Sometimes you may, Janet, have met somebody, or maybe you yourself are that person, who doesn't seem to get too worried about things. They seem to have a perspective that, “I can handle this, I got this, It'll turn out just fine”. They can kind of roll along with life. Then there are individuals where the cup of water spills and it's the end of the world. There's concern about little things. How we perceive stress is based on, I think, early life experiences. It's based on what we come into this world with and the modifiers in the environment, and then from there, form those who perceive stress and those who don't perceive a lot of stress. It gets back to coping. Some individuals have the ability to cope much better than other individuals and have a lot more to rely on in times of stressful events than others?

 

Janet: I think the coping that you mentioned is so important. A big part of our job is probably supporting that throughout our treatment, the rehabilitation program, so the patient can continue to cope with the challenges of aphasia.

 

Jacqueline: I agree, finding out how an individual's coping. We've been working on trying to develop a coping questionnaire for people with aphasia for a few years now. We're data collecting with that and hoping to have that available to clinicians. Right now, we don't have one that's aphasia friendly. We don't have a coping questionnaire to find out how are people coping? What are they relying on? Are they relying on maladaptive behaviors to cope? Are they drinking a lot? Are they abusing other substances? Or, are they reaching out to friends? Are they getting some exercise. There are some very positive ways of coping, and there are some natural, healthy ways of coping. Finding that out is very important clinically, and how do we do that? My answer is we need to develop a good questionnaire that's psychometrically valid, and so forth. Until then, clinicians can definitely ask, and use supported communication techniques, I should say, in order to get those answers to, “What do you do when you get really frustrated?”, and then have some pictures to point to perhaps, or words to point to whatever that person is able to best communicate with?

 

Janet: That's a great idea.

 

Jacqueline: Yeah. First of all, understand what their coping mechanisms are and strategies, and then help them to develop more or, through the Life Participation Approach, how do we help them to have access to those things that might help them to cope? If they were really engaged in group activities prior to their stroke and living with aphasia, then how can they get back to that? How can we have them engage again?

 

Janet: Well, you've just actually given a partial answer to the next question I want to ask you, which is how we can, as clinicians, incorporate some of these positive experiences or helpful experiences into our clinical activities. The thing is, like many of us, we may not be experienced at, say, incorporating mindfulness or yoga into our own lives, not to mention putting them into treatment. And so we likely have no idea how to start. Based on your research, and again, on your clinical experience, what advice can you give our listeners who may wish to add some of these ideas or some of these activities to our practice? Where do we start?

 

Jacqueline: I think getting back to that comfort level. What is the clinician comfortable with? And as you had pointed out, that if you're don't have that internal self-comfort of “I can have the person that I'm working with, kind of slow down, take a deep breath, maybe take four breaths in and out slowly”. If I don't feel comfortable doing that, then don't do it, because it's going to come off kind of odd. Having some comfort, whether it be practicing with oneself, or practicing with others before you get into therapy, I think that's really important.

 

Janet: There are practices such as yoga, for example. I think if you're going to incorporate yoga, you have to know what you're doing. You have to understand yoga, or you have to be able to do it or to instruct it. If you're not at that instructor level, there can be problems in the therapy session. So you wouldn't want to incorporate yoga, unless you are really skilled at it and know what you're doing. But there have to be some positive practices that are relatively easy to incorporate, maybe laughter or even a discussion of spirituality. I'm thinking about, sort of, the term Monday morning practice. What can clinicians do on Monday morning, without having to do a lot of learning about yoga or practicing yoga? What can they do on Monday morning, when they see clients that might help them begin on this path of integrative health practices or thinking about the other aspects of our aphasia rehabilitation? Does that makes sense?

 

Jacqueline: Yeah, yeah. Yeah. It is the “rubber hitting the road” sort of thing to all of this?

 

Janet: Exactly.

 

Jacqueline: There is adaptive yoga that Amy Dietz and Laura Bislick and colleagues had published in AJSLP, a couple of years ago. There are some postures that are presented that are accessible to clinicians. So they could look at those. There are some adaptive yoga techniques that are clinically accessible. Some very simple breathing activities. These are not complicated. It is just a matter of “Close your eyes; and for a moment, go ahead and take a nice deep breath in and out.” Recognizing that the breath really anchors everyone to the moment. When you have an individual that you're working with that seems to be over stressed and it's working against them in what you're trying to have accomplished in your therapy session, taking a moment, closing the eyes, and breathing will bring them back to that moment, moment of relaxation or to the present where they can approach the task with a different perspective.

 

Janet: It makes so much sense to me and even just doing it with you - for those few seconds, closing my eyes taking a deep breath, I felt a difference in my own self, just in the in the course of this conversation. I can imagine that it will produce a similar effect, resetting, if you will, the clinical environment, resetting the goals, and reducing perhaps any negative perceived stress that the patient might have. If they're thinking that they're not doing what they're supposed to, or they're not meeting goals, or they're having troubles. It's great idea.

 

As we bring this conversation to a close Jacqueline, are there any other pearls of wisdom or lessons learned in thinking about the influences of integrative health behaviors on language and communication, rehabilitation, not just for the people with aphasia, but also for their families, their friends, and for clinicians,

 

Jacqueline: I think lessons learned is keeping an open mind and really approaching aphasia, with the perspective that there is the language impairment, but there's also a bigger picture here. There are different approaches to recovery that can stem from traditional ancient medical beliefs that may help us during this modern time that we're in. I think keeping an open mind, but yet, maintaining some skepticism, too. We do want to continue to have science guide our therapies, as well as our clinical experience. It can be hard to have a convergence of the two at times. But I think that we can't ignore that there is more than just the language impairment going on.

 

Janet: We cannot ignore it. You're right, especially if we are proponents of the LPAA model, which incorporates the whole individual in living their life. I agree with everything that you've said and I'm finding myself thinking of that balance, too, between there is some stress that can be good, but don't have too much stress, because you don't want it to be a bad thing, and keep an open mind but have healthy skepticism. All of that's a good thing for all of us to practice.

 

Jacqueline: Not easy, it's hard to do, but it's a good thing.

 

Janet: Today's conversation has been, for me at least, thought provoking and enlightening and I hope it has been for our listeners as well. Realizing that additional work is necessary to provide an evidence informed foundation for incorporating many of the activities such as yoga practice, or mindfulness into aphasia rehabilitation, I believe that this is an avenue well worth pursuing in both clinical and research activities. I would like to thank my guest, Dr. Jacqueline Laures-Gore for sharing her thoughts and experience in this important area of clinical research and practice, Jacqueline, I greatly appreciate you taking the time to speak with me today, and for providing our listeners with the foundation and how to think about integrative medicine.

 

Jacqueline: You are very welcome. This was very fun. Thank you, Janet, for asking me.

 

Janet: Oh, you're welcome.

 

I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show, please see our Show Notes. They are available on our website, www.aphasia.access.org. There you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. For Aphasia Access Conversations, I am Janet Patterson and again, I thank you for your ongoing support of aphasia access

 

 

 

 

 

 

 

 

 

 

 

References

Aphasia Access Conversations

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

Episode #95: Supporting Psychological Well-Being: A Conversation with Jasvinder Sekhon

Episode #89: Aphasia is a Complex Disorder: Mental Health, Language, and More – A

Conversation with Sameer Ashaie

Episode #69: Motivation and Engagement in Aphasia Rehabilitation: In Conversation with Michael Biel

Episode #67: Considering Depression In People Who Have Aphasia and Their Care Partners: In Conversation with Rebecca Hunting Pompon

 

Scholarly papers

Bislick, L., Dietz, A., Duncan, E. S., Garza, P., Gleason, R., Harley, D., ... & Van Allan, S. (2022). Finding “Zen” in Aphasia: The benefits of yoga as described by key stakeholders. American journal of speech-language pathology, 31(1), 133-147. https://doi.org/10.1044/2021_AJSLP-20-00330

Hunting Pompon, R, Amtmann, D., Bombardier, C., & Kendall, D. (2018). Modifying and validating a measure of chronic stress for people with aphasia. Journal of Speech, Language and Hearing Research, 61(12):2934-2949. https://doi.org/10.1044/2018_JSLHR-L-18-0173 

Kagan, A., Simmons‐Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, Threats, T., & Sharp, S. (2008) Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention, Aphasiology, 22(3), 258-280. https://doi.org/10.1080/02687030701282595

Laures-Gore, J., Cahana-Amitay, D., & Buchanan, T. (2019). Diurnal cortisol dynamics, perceived stress, and language production in aphasia. Journal of Speech, Language, and Hearing Research, 62, 1416-1426. https://doi.org/10.1044/2018_JSLHR-L-18-0276

Laures-Gore, J., & Rice, K. (2019). The Simple Aphasia Stress Scale. Journal of Speech, Language, and Hearing Research, 62, 2855–2859. https://doi.org/10.1044/2019_JSLHR-L-19-0053

Laures-Gore, J., Russell, S., Patel, R., & Frankel, M. (2016). The Atlanta Motor Speech Disorders Corpus: Motivation, Development, and Utility. Folia-Phoniatrica-et-Logopaedica 68(2):99-105. https://doi.org/10.1159/000448891

McGuire, S.S., Laures-Gore, J., Freestone, E.J., & van Leer, E. (2021). Simulated laughter, perceived stress, and discourse in adults with aphasia, Aphasiology, 35:9, 1207-1226. https://doi.org/10.1080/02687038.2020.1787944 

McNeil, M., Prescott, T., & Lemme, M. (1976). An application of electromyographic feedback to aphasia/apraxia treatment. Proceedings of the Clinical Aphasiology Conference, 151-171. http://aphasiology.pitt.edu/21/1/06-11.pdf

Thompson, C.K., Hall, H.R., & Sison, C.E. (1986). Effects of hypnosis and imagery training on naming behavior in aphasia. Brain and Language, 28(1), 141-153. https://doi.org/10.1016/0093-934x(86)90097-0

 

urls

Aphasia & Motor Speech Disorders Lab, Georgia State University  https://education.gsu.edu/csd/csdresearchoutreach/aphasia/?fbclid=IwAR1x5-CQxmiXkV4ZVcDbbt5oZmYw5VhZLKsmmw62xmh9XyC6O9sEzqV0mvU#stress-and-aphasia and https://www.facebook.com/gsuaphasia

Interviewer info

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

In this episode, Lyssa Rome interviews Kristin Schaffer Mendez about her work on counseling for people with primary progressive aphasia and their families.

 

Gap Areas

This episode focuses on Gap Area #6, insufficient attention to depression and low mood for people with aphasia across the continuum of care.

 

Guest info

 

Dr. Kristin Schaffer Mendez is a speech-language pathologist and assistant professor at the University of St. Augustine in Austin, Texas. Prior to entering academia, she worked in several clinical settings, including inpatient rehabilitation, home health, and private practice. Dr. Mendez’s experience as a clinician has inspired her research, which is centered upon examining and addressing psychosocial factors in acquired neurogenic communication disorders through patient-centered and care partner-inclusive treatment paradigms, including counseling, support groups, and the use of telerehabilitation platforms.

 

Listener Take-aways

In today’s episode you will:

• Learn about some of the psychosocial factors that people with primary progressive aphasia may face.
• Understand how speech-language pathologists can provide both educational and personal adjustment counseling for people with PPA.
• Describe a cognitive behavioral approach to personal adjustment counseling for people with PPA.

Edited show notes

Lyssa Rome

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

 

I'm today's host for an episode that will feature Dr. Kristin Shaffer Mendez. Dr. Schaffer Mendez is a speech language pathologist and assistant professor at the University of St. Augustine in Austin, Texas. Prior to entering academia, she worked in several clinical settings, including inpatient rehabilitation, home health, and private practice.

 

Dr. Schaffer Mendez his experience as a clinician has inspired her research, which is focused on examining and addressing psychosocial factors in acquired neurogenic communication disorders through patient-centered and care partner-inclusive treatment paradigms, including counseling support groups, and the use of telerehabilitation platforms. In this episode, we'll be focusing on her research on counseling for people with primary progressive aphasia.

 

Dr. Kristin Shaffer Mendez, welcome to the Aphasia Access podcast. It's great to have you here.

 

Kristin Shaffer Mendez 

Thank you so much for having me. It's wonderful to be here.

 

Lyssa Rome 

So I wanted to get started by asking you a question that we often start with, which is whether you have any “aha” moments, so experiences that were pivotal for you in your work as a clinician or as a researcher?

 

Kristin Shaffer Mendez

Yeah, you know, I think throughout my career, there have been a series of “aha” moments. If I think through my career, I've had several different stages. So initially working clinically, as a speech language pathologist, as I was partnering with patients with all different types of communication disorders and their families, I quickly realized that we weren't going to address the specific speech language goals if I didn't first acknowledge and check in with these individuals and get a sense of their general wellbeing, and a sense of if they were suffering, if they were grieving, if they were going through or processing something specific. I did have some didactic training as a student and counseling—not a lot—and I noticed when I would try to find evidence-based resources, I wasn't finding a lot of disorder-specific counseling information.

 

Fast forward a few years later, I was working as a research speech language pathologist at the Aphasia Research and Treatment Lab in Austin, Texas. And I was working primarily with individuals with PPA, and sometimes I would notice, and in the midst of a speech language treatment session, they would say something maybe under their breath, or maybe in frustration, like, “Oh, my dumb brain,” or “ I’m such an idiot.” And I was thinking, oh, goodness, if this is what's coming out of their mouth, I only wonder what what's happening behind the curtain. And if we were to look at the inner workings of their mind, what their self talk would look like, and how critical it might be. Then I was thinking, “Okay, now what what types of tools might I be able to provide for these individuals so that they can minimize that critical voice, and be more positive, be more adaptive.” And so that leads me to to my line of research.

 

Lyssa Rome

And that also leads, I think, straight into the gap areas. So in this podcast, we've been highlighting those gap areas that were identified in the State of Aphasia Report by Nina Simmons Mackie, which was published in 2018. And I think, in this episode, what you've described so far, and what we're going to be talking about, really focuses in on gap area number six, which is insufficient attention to depression and low mood for people with aphasia across the continuum of care.

 

You described some of the kinds of self-talk that you were hearing people say. I'm wondering if you could tell us a little bit more about the kinds of psychosocial issues that people with primary progressive aphasia typically experience. And I guess I also wonder if this differs at all from what people with post-stroke aphasia experience?

 

Kristin Shaffer Mendez

So individuals with primary progressive aphasia, the psychosocial factors that they're facing can range from feelings of low confidence, to social isolation, withdrawal, reduced participation in life activities to a diagnosis of mood and or anxiety disorder. So similar in many ways to what individuals with stroke-induced aphasia may be facing. But the difference here is that when we look at the prognosis and the trajectory of life for individuals with PPA, in contrast to individuals with stroke-induced aphasia, who can look at a future of improved communication functioning, or maybe an plateau in communication status, for individuals with primary progressive aphasia, their trajectory is that of decline. And so these individuals are at particular risk for facing these psychosocial threats and for these factors to change over time as well.

 

Lyssa Rome 

So given some of these needs that you've just described and the risks that you've described, how can we as speech language pathologists provide counseling in our treatment for people with PPA?

 

Kristin Shaffer Mendez  

Yeah, so there's there lots of different avenues that we can go down in terms of providing counseling, and really what I'll say is, this is going to be person-specific, and we'll tailor our counseling to the needs of an individual, session by session.

 

There are two main camps in terms of counseling within our field more broadly, in communication sciences and disorders. And this I follow from Dr. David Luterman, of course, one of the long-standing advocates and pioneers for the integration of counseling in our field. He cites two main forms of counseling. One is informational counseling, otherwise known as psychoeducation, or educational counseling. This is where we're providing disease-related information. And then there's personal adjustment counseling. This is going to be more emotion-centered. This is where we are directly addressing those thoughts, feelings, and behaviors underlying the diagnosis. So I really do believe that we can toggle between the two, and that our patients can and may benefit from both forms of counseling.

 

As a field, research has shown that speech language pathologists tend to feel more comfortable in providing the educational or the informational counseling relative to personal adjustment counseling, and they're also more likely to have been provided with didactic education in that information-centered counseling. But this is this is where my work comes in. And this is where I'm really motivated and invested in in making changes.

 

I'll talk some more about personal adjustment counseling. So this can range from micro-counseling skills, that are more general, and that are those soft skills that will help to foster a strong therapeutic alliance with our patients. So actively listening, listening without having an agenda of what we're going to say next, or thinking about the time and redirecting back to the speech language treatment task. Having moments of therapeutic silence, where again, we're not jumping in to fill empty space, but pausing a beat, and letting the patient continue to talk, or sit for a moment and process. Paying attention to our body language, the nonverbal way that we're communicating, leaning in, nodding, validating, affirming through the way that we are presenting. And then listening to what our patients are saying, and then thoughtfully summarizing. So letting our patients know that they are seen and heard and validated.

 

So those are, those are microcounseling approaches, and we can provide that anytime with any of our patients or our care partners. But then there are also specialized counseling approaches, and that's where my research really delves into further that are going to require more training and a specialized set of skills.

 

But really, in terms of our opportunities to provide counseling that can really be organically woven into our interactions from the very initial assessment throughout treatment, checking in with our patients at the beginning of sessions, at the end of sessions, and just being being aware, being observant, and noticing if there are moments when our patients seem to be undergoing a moment where they want to talk and where we might need to pause. And use that moment as as a teachable counseling opportunity. And not feel as though we need to stringently adhere to our speech language treatment sessions, or that we have to have some formal time in our sessions that’s set aside for counseling.

 

Lyssa Rome   

It almost sounds like you're describing approaching our treatment sessions with a counseling mindset that sort of is woven throughout. And you alluded to more specialized programs that we can also use. I know you've developed a cognitive behavioral therapy program for people with PPA, and I'm curious about that program, and about why you selected CBT. And maybe if you could define it a little bit? 

 

Kristin Shaffer Mendez

Absolutely. Yes. So cognitive behavioral therapy, or CBT, is one of the most widely researched and popular forms of psychotherapy. And it trains individuals to examine the connection amongst thoughts, feelings, and behaviors in order to identify, assess, and respond to maladaptive or unhelpful thoughts to optimize mood and behavior more broadly. And also CBT has been modified for individuals with a variety of diagnoses, including those with neurodegenerative disorders, such as Alzheimer's dementia. So when I was considering different psychotherapeutic approaches to adapt, it really seems like CBT could could be a great starting point. There's really limited research in general about adapting counseling approaches for this population.

 

So within this treatment program, there were both opportunities for dedicated counseling, and that counseling closely followed the traditional form of CBT. However, the sessions were oriented towards communication-centered challenges. And so within that, there's opportunities to check in on an individual's mood, and talk through a home practice exercises from the last week, check in on that, and talk through, “Okay, so what what types of communication difficulties came up this week? And then how we should we prioritize our time together? What do we need to work through?” Then working through specific challenges using aphasia-modified CBT approaches and, and then ending with a feedback component as well. So that's basically the gist of a traditional CBT approach, as a CBT session. So there was that component, but also, these sessions were aphasia-modified in that aphasia-friendly written and visual supports were provided as needed to ensure comprehension of these key CBT concepts that could be new new terminology for any individual who's entering a counseling dynamic. We just wanted to make sure that these individuals were provided with that support.

 

But so in addition to the more structured counseling, there were also opportunities organically within the speech-language portion of the treatment sessions, where if an individual was demonstrating frustration or emotional distress, or they were saying statements that were maladaptive in nature, then these were teachable counseling moments where CBT techniques were used within the session.

 

Lyssa Rome

So can you tell us a little bit more about the clients goals and also about what you found?

 

Kristin Shaffer Mendez

Yes, absolutely. So, first, I want to contextualize this research and mention that it is considered pilot research. So this is early phase, early stage research, where we are looking at answering the question: Is this novel intervention feasible and is it acceptable to patients? So we're obtaining information to see if patients were satisfied by the treatment, if this was feasible for a speech language pathologist to implement. What we're finding with a small cohort of individuals, so we've published one paper in the American Journal of Speech Language Pathology with our very first pilot participants, that was just a single case experimental design. We have nine additional individuals, three per PPA variant, who have participated in our second phase of pilot research and we have a manuscript in preparation for that stage. But what we're finding today is that this intervention is acceptable. And it's it's feasible. We were also really intentional in selecting and recruiting and enrolling individuals who did endorse that, in light of their PPA, of their communication challenges, that they were facing threats to their emotional well-being and that they were interested in participating in an intervention that included counseling.

 

So I think that's one important point to make when looking at the individuals who have undergone this intervention. Then with regard to goals, that was really individual for each person. It ranged from participating more in prayer groups to calling family members or friends instead of emailing them or not picking up the phone out of a sense of a fear of what would happen during the conversation. And yes, so these goals were all created collaboratively with with me as the clinician and with the participant, to really determine what was going to be meaningful and valuable in these individuals lives and what to work towards, collectively and in our time together.

 

Lyssa Rome

That makes so much sense and I can imagine how addressing some of the psychosocial challenges, as you have described them, would would allow people to participate in the ways that you were just detailing.

 

I'm curious about.. you mentioned earlier on, that we don't always get a lot of training as SLPs in specific counseling approaches, and often are more comfortable, I think, with the educational counseling piece of things. So what kind of training would clinicians need—both future clinicians and current clinicians—in order to use this type of approach with our clients?

 

Kristin Shaffer Mendez

Yeah, that's, that's a great question. And that's what we're continuing to examine, as we continue to move through our phases of research and so we've now completed pilot research and in the future we're looking at efficacy research and and later on down the line, I can say more generally, what I envision is that these types of counseling approaches and the evidence base wherein, that we discover, will then be incorporated more universally in graduate school education. But not so that, necessarily, students are going to graduate being able to implement and provide these specialized counseling approaches, but so that they have a sense of the theoretical underpinnings and the basic constructs of these approaches, and even thinking about patient candidacy—who might be appropriate and who might benefit from these approaches. But then in the future, I can see there being continuing education opportunities similar to LSVT, the Lee Silverman approach, where maybe it's a two-day training, for example, and intensive training where individuals are provided with a lot of hands-on experiential learning, so that they are equipped with those tools that they can then implement with patients.

 

Lyssa Rome 

It brings to mind another question that I have, which I think is often on my mind anyway, when I think about counseling approaches, which is: We know that a lot as you've been describing, a lot of anxiety or mood related challenges are directly related to communication-specific disorders, in this case, PPA. So as we think about the needs, the psychosocial needs of people with PPA, given that so many of those needs are directly related to this progressive communication disorder, how do we know what's within our scope, and when we might consider referring to a mental health professional, for example, if the needs are greater than what we are able to meet on our own?

 

Kristin Schaffer Mendez

That's a great question. And I do believe as speech language pathologists we’re uniquely equipped to providing counseling. We are the communication experts. And we possess specialized skills in understanding individuals with communication impairments, and helping them express themselves. And this is something that a lot of licensed mental health professionals may not have the background training and experience in.

 

So with regards to determining when to potentially refer, so it's completely normal, we would argue, that individuals facing a neurogenic communication disorder, such as PPA will, will likely experience grief and loss and suffering as they're processing their diagnosis and navigating their days. But if we have a sense that they are presenting with a mood and or anxiety disorder that may be undiagnosed, then certainly the first step is to administer a mental health screening or an anxiety disorder screening, there are several available online that are free—the Personal Health Questionnaire, the Generalized Anxiety Disorder Scale, for instance. And then if the results do show that there is the potential presence of mood or anxiety disorder, then having having a conversation and coming from a place of care and concern and letting our patient know that we do have concerns that these individuals may be presenting with challenges that go beyond what we are able and equipped to provide. And then from there, looking into finding mental health professionals within the community, so that we can give that warm handoff and engage in interprofessional collaboration, if need be, if the mental health professionals maybe don't have experience in treating a client with PPA or aphasia, for example.

 

Lyssa Rome 

And that's, I think, a perpetual challenge, right? It's finding those people who can support clients with mental health needs beyond what we're able to help them with—people who have those those kinds of communication skills and experience.

 

Kristin Schaffer Mendez

And if I could just say one other thing as well. When I said a warm handoff, I don't necessarily mean that we stop treating our patient or that we don't continue to provide counseling. It's just we want to make sure that we're staying in our lane and providing counseling as it relates to the communication challenges. But not going beyond and stepping outside, especially if there's some type of mental health disorder that needs to be treated and managed more broadly.

 

Lyssa Rome

That totally makes sense to me. It's working with the mental health counselor and not instead of.

 

So we know that people with PPA will continue to experience declines in their language functioning as their disease progresses. I'm wondering about how the counseling needs change over time and how we can meet their needs over time, as their disease progresses?

 

Kristin Shaffer Mendez  

Yes, that's that's a great question. And that's really important too, is that we demonstrate flexibility, both in the counseling that we provide and in the speech language interventions we provide that's really yoked to and sensitive to a person's presentation.

 

So Dr. Ian Kneebone has published work pertaining to the provision of CBT for individuals who have survived a stroke. And I think that the principles that he discusses would be really applicable for individuals with PPA or other communication impairments as well, in that we must demonstrate flexibility, that is yoked to an individual's cognitive and communication presentation. And so if, for example, an individual, we'll say with PPA, is presenting with a more progressed clinical profile, then we would consider using language that's more concrete versus more abstract. We would also consider the provision of additional environmental supports, or multimodal communication, for example. And we would also want to include our care partners, if they are amenable to participating, as that can then help to ensure facilitation and implementation of the strategies outside of the therapy sessions.

 

Lyssa Rome   

That brings me to another question, which is that you had mentioned earlier in a study that hasn't been published yet, you had people with each variant of PPA involved in your research. And I'm curious about sort of, in addition to thinking about disease progression, if there are also aspects of the variants that clinicians should be aware of in terms of their neuropsychological or behavioral features. And how would we want to think about sort of varying strategies based on those features? Or what to expect even based on those features?

 

Kristin Shaffer Mendez

Absolutely, yes, that's a great question. And I think that being aware of the potential presence of these neuropsychiatric and behavioral features is important in general, because this can also influence the speech-language interventions we provide. There has been research that have has shown some general patterns that we might expect to see across the PPA variants. So for example, apathy has been found in some research studies, and then other other features that are more specific to a specific PPA variant. So, for example, with the semantic variant of PPA, we may see loss of empathy, mental rigidity, compulsive behaviors, disinhibition. With the logopenic variant, we may see agitation, anxiety, irritability, and with the nonfluent, agrammatic variant, we might also see irritability, and these individuals also often may present with depression. So you know, those are those are some some general trends that we've seen. But again, we have to look at each person as an individual.

 

But in terms of the counseling that we provide, yes, I think that if we have an individual that, for example, has the semantic variant of PPA, and they're presenting with mental rigidity, then thinking about what types of counseling may resonate with them, or what types of counseling may need to be provided to family members and care partners will be important to consider. So for example, with with cognitive behavioral therapy, which is really hinged upon cognitive restructuring, and taking thoughts that are unhelpful or maladaptive and monitoring and adjusting them so that they become more helpful and adaptive. If somebody presents with mental rigidity, then this type of intervention may be met with resistance.

 

That said, for the very small sample size of individuals I've worked with, that hasn't always necessarily been the case that that these individuals were not open to engaging in a counseling approach like this. Really small sample sizes—we really can't make any sweeping statements at this point in time. But I think that the key is that we are aware of these features, and that we are providing counseling and educational support and that we are flexible. And sometimes, an approach may not work in general, sometimes it may not work a specific day, and so this really requires trialing and error and experimentation and openness on the part of both the clinician and the client.

 

Lyssa Rome

That leads me actually directly into a question that I wanted to ask as we wrap up. I think it is so important to meet people where they are on a specific day, and to be really aware of who they are and what they're experiencing as an individual—I think that's pretty core to many of our, all of our practices as speech language pathologists. I wanted to wrap up by taking a step back and asking you a little bit more about why this is so important. You touched on it in the beginning, but how does counseling support a life participation approach for our care for people with PPA?

 

Kristin Shaffer Mendez

Yes, so the orientation with counseling is within the context of a whole person who lives a rich, dynamic life. And these individuals are unique, and they have different values and goals. And they do have a communication impairment, but that's just one part of their life, and doesn't define them as a person. And so within the work that we do, in providing counseling, we are honoring these individuals and and that full landscape of their life. And we're equipping them with skills so that they can cope with the challenges that they are facing with their communication challenges. So that they can continue to live a meaningful life that aligns with their values and their goals for their time on this earth.

 

Lyssa Rome

What I'm moving and beautiful way to wrap this up. Dr. Kristin Shaffer Mendez, thank you so much for talking with us. I really appreciate it. It's been a pleasure.

 

Kristin Shaffer Mendez

Oh, it's been a pleasure as well. Thank you so much for the opportunity.

 

Lyssa Rome

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 at 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.

 

 

 

Twitter: @Schaffer_SLP

References and Resources

Twitter: @Schaffer_SLP

 

1. Luterman, D. (2020). On teaching counseling: Getting beyond informational counseling. American Journal of Speech-Language Pathology, 29(2), 903–908. https://doi.org/10.1044/2019_AJSLP-19-00013
2. Schaffer, K. M., Evans, W. S., Dutcher, C. D., Philburn, C., & Henry, M. L. (2021). Embedding aphasia-modified cognitive behavioral therapy in script training for primary progressive aphasia: A single-case pilot study. American Journal of Speech- Language Pathology, 30(5), 2053–2068. https://doi.org/10.1044/2021_AJSLP-20-00361
3. Kneebone, I. I. (2016a). A framework to support cognitive behavior therapy for emotional disorder after stroke. Cognitive and Behavioral Practice, 23(1), 99–109. http://doi.org/10.1016/j.cbpra.2015.02.001

 

Screening tools and citations:

PHQ-9: K. Kroenke, R.L. Splitzer, J.B. Williams. “The PHQ-9: validity of a brief depression severity measure.” Journal of General Internal Medicine. 16(9): 606-13. September 2001. Retrieved July 9 2018. https://www.ncbi.nlm.nih.gov/pubmed/11556941.

 

GAD-7: Spitzer, R. L., Kroenke, K., Williams, J. B. W., & Löwe, B. (2006). A brief measure for assessing generalized anxiety disorder: The GAD-7. Archives of International Medicine, 166(10), 1092–1097. https://doi.org/10.1001/archinte.166.10.1092

 

Welcome to the Aphasia Access Aphasia Conversations Podcast. I’m Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Davetrina Seles Gadson. We'll discuss her work involving how brain lesion characteristics may intersect with aphasia recovery, race, and psychosocial factors, as well as issues involving health-related quality of life assessments.

Dr. Davetrina Seles Gadson is the first Black-American to graduate with a Ph.D. in Communication Sciences and Disorders from the University of Georgia. She is a neuroscientist and certified speech-language pathologist with expertise in adult neurological rehabilitation and patient-centered outcomes. She currently is Research Faculty, in the Department of Rehabilitation Medicine, at Georgetown University. Dr. Gadson’s research focuses on the influence of health disparities in minority stroke survivors with aphasia and the effect of such disparities on brain functioning, aphasia severity, and health-related quality of life. Most rewardingly Dr. Gadson is the co-host of “Brain Friends”, a podcast for neuro nerds and stroke survivors to talk about aphasia advocacy, language recovery, and community.

Listener Take-aways

In today’s episode you will:

• Learn how health disparities may influence aphasia outcomes and why more research is needed

 

• Discover why "Brain Friends" is another podcast you'll want to add to your playlist.

 

• Gain practical tips on how to build confidence in intercultural interactions with your clients

 

• Hear how health-related quality of life (HRQL) measures can help  inform your clinical practice

 

We’d like to recognize Kasey Trebilcock & Amanda Zalucki, students in the Strong Story Lab at CMU, for their assistance with this transcript.

Show notes edited for conciseness

Ellen Bernstein-Ellis (EBE)

EBE: I am so excited to have a fellow podcaster here today. Thank you for being here. And I just listened to the January Brain Friend’s episode. It was great. So I hope our listeners will check it out too. I want to also give a shout out to your consumer stakeholder and co-podcaster, Angie Cauthorn, because she was a featured guest on episode 70, in June of 2021, as we recognized Aphasia Awareness Month, and you just spoke with her about aphasia types and aphasia conferences, and you gave a big shout out to CAC and you gave clinical aphasiology conference and you also gave a big shout out to the Aphasia Access Leadership Summit. So really important conferences, I think that stimulate a lot of discussion and values around patient centered care. And your Brain Friends podcast just has a great backstory. So why don't we just share about how that all started? Where's the backstory to that, Davetrina?

DAVETRINA SELES GADSON: Thank you so much for having me. This is such an exciting opportunity. So, Brain Friends started with myself and Angie. We were on the National Aphasia Association's Black Aphasia group call and I just loved her energy. She reached out to me after we finished that group call, and we just started talking. Our conversations were so informative, and it just lit this passion and excitement in me. I said, “Hey, can I record some of these, and maybe we do like a podcast?”, and she was totally down for it. It's just been such an innovative and fun way to disseminate science and engage many stakeholders.

EBE: I want to thank Darlene Williamson, who's president of the National Aphasia Association for sending me a little more information. You told me about this group, and so I wanted to find out more. She provided this description by Michael Obel-Omia and his wife Carolyn, and I hope I said his name correctly, who provide leadership to this group. And they said that in this group, the Black American Aphasia Conversation group, “provides a place for Black people with aphasia to share their stories, provide support, meditation, and brainstorm ways to advocate and consider policies. We will discuss the unique challenges and gifts we share due to our experiences with disability and race.” I found out that you can reach out to the National Aphasia Association (NAA) for more information and to get on the email list for a meeting notifications. And in fact, I put the registration link in our show notes today. So, sounds like that group has been a meaningful discussion forum for you, too.

SELES GADSON: It's been so fun. I share how for me, I've been in the field practicing for a little over 16 years now, and this was my first time being in a room with so many people that look like me. And for many of the survivors on the call, I was one of their first Black SLPs that they had ever met. Just even having that connection, and being able to speak to some of the challenges, and some of the things culturally that we both share has been my outlet, biweekly.

EBE: I’m going to make sure we have that link in our show notes. Also, the link to your podcast because I encourage people to listen to Brain Friends, I've really enjoyed it.  When you and I were planning for this episode today, you talked about how being part of the National Aphasia Association’s Black American Aphasia Group really helped to energize you and the research you were doing, and what a nice integration of life that was.

I will want to tell our listeners about one more wonderful thing, and that's the interview you were part of on the ASHA Voices podcast as well as the related article in the ASHA leader, where I learned more about your journey to doing this research. So, as you provided clinical services for a Black client as an outpatient clinician, and this is pre- doctoral research, you recognized that there was a significant gap in the literature around working with African Americans with aphasia. You saw the need to understand the impact of aphasia on identity and motivation in order to best help this particular client. And those are both really important concepts within the Life-Participation Approach to Aphasia (LPAA) framework as well. So, then you shared that you got some important advice from an important mentor. Do you want to share what happened next?

SELES GADSON: Definitely. So, one thing that's also unique about that time is that at that point in my career, I had worked in many of the clinical settings. I had done acute care, inpatient rehabilitation, skilled nursing facility, and even worked as a travel SLP traveling throughout the United States. And so, once I had got to that outpatient setting, it was different from any of the other settings because these individuals were home. And often times, they wanted to get back to work. I remember feeling a little discouraged because I wasn't finding research on a lot of functional treatment approaches or functional therapy. In addition, I wasn't finding research on black stroke survivors with aphasia. And so, I mentioned to one of my mentors at the time, Dr. Paul Rao. I said, “what's going on in the field? And I'm not seeing this, and I have this client, and I don't really know what to do.” And he said to me, “Stop complaining kiddo, and go back and get your PhD.” Admittedly, when he said it, it was kind of like, “okay fine, I'll go do it.” I don't think I realized all what it would take. That's what really made me pursue the degree was this notion that I could help facilitate some of that change and bring some of the research that I needed to see.

EBE: That is so important. And that story really made me reflect on another story that has really impacted me from a dear colleague, because you experienced in your doctoral work some concerns about doing research on Black Americans because your interest was seen, as it said in I think the ASHA Voices interview or in the Leader, as “personally motivated.” Your story mirrors one that a colleague and dear friend, Nidhi Mahindra, told me as well. During her doctoral research, she was told that while pursuing multicultural interests were worthy, that she may face barriers to getting funding to pursue that line of work. That might be problematic, right? She had to struggle with that. Despite that daunting message, she persisted, and then was funded by ASHA on a grant studying barriers influencing minority clients’ access to speech pathology and audiology. Nidhi reminded me how our life experiences can often inform our work in important and valuable ways. Davetrina, you've channeled your experiences into these explicit observations and data that you shared with your doctoral committee. That was a really important part of moving forward.  Do you want to share some of the points  gathered for that doctoral committee to help support why this research is so important?

SELES GADSON: First, I want to thank Nidhi. Hopefully I'm pronouncing her name right, for her perseverance, because it was some of her work that helped me in my dissertation. Being able to cite her just really shows the importance that everybody plays in breaking barriers and pursuing the things that really speak to them. And one of the things that I'll clarify, it was two parts in pleading this case. The first part was that I changed the committee. I think that that was a supportive thing.

And then, the second part was that when I prepared all of the research on why I needed to do this work. Some of the research looked at what we knew already with stroke recovery in minoritized groups, which was that Black African Americans were twice as likely to have a recurrent stroke than any other ethnic group and what we were seeing in the aphasia literature for Black Americans, which was the narrative of Black Americans having longer hospital stays, more hospital costs, but poor functional outcomes. And so, it was these two key pieces that I had really gathered. When I went back to the new committee to share and plead my case on why I really wanted to do this research, they had that initial onset of knowing that this research definitely needs to be done. I think that that's what helped it go through.

EBE: Wow. I think those are really important reasons. That whole concept of allowing our life experiences to inform our work and to value that. As we start to talk about your research, and I'm really excited to get to share this amazing work you're doing, I thought it might be helpful to define some of the terms that are integral to this research Some of the definitions are a little tough to wrap your arms around because they're not consistent in the literature or are still waiting to develop. Let’s start by discussing what you want the listeners to know about the definition for health-related quality of life, or, as we'll call it, HRQL.

SELES GADSON: HRQL is operationally defined that it's multi-dimensional. The way I define it a lot in my work is the perception of the individual's ability to lead a fulfilling life in the presence of a chronic disease or disability such as aphasia, but really their perception in five domains. The five domains that I look at in my work are physical, mental, emotional, social communication, and then role, the individual's ability to get back into the activities that they used to be able to do.

EBE: Okay, that's really helpful. I think we should also discuss or define patient-reported outcomes or PROs. Sometimes they are also referred to as PROM's, patient-reported outcome measurements. How do they relate to HRQLs?

SELES GADSON: Patient-reported outcomes is a health outcome directly reported by the patient without interpretation. Patient-reported outcomes often look at the status of the health condition. The biggest thing about patient-reported outcomes is that it's without the interpretation of the practitioner. So, whatever the patient says is what we're going to take as gold.

EBE: Why is it particularly important then to look at HRQOL for Black stroke survivors?

SELES GADSON: That's such a great question. And so I want to break it down in two parts. I think the first part is that given the lack of normative data for Black stroke survivors, when we're only looking at clinician-reported outcomes, that's where we get to this bias and the normative bias. I know that there's research out where there are some outcomes to where we're already seeing this five-point difference. And for some research, that five-point difference is considered clinically meaningful. I think that if we're not using these patient-reported reported outcomes, then we put ourselves in a position to contribute to the disparities that we're seeing in standardized assessments. So that's the first answer.

The second reason is that we know that nonclinical factors such as physician-race concordance drive up to 80% of what we're seeing in poor functional outcomes in minoritized groups. If we're not asking the person, then we're not able to really understand the things that they want to do, and we're already coming in with this majority type attitude which could influence one's participation in therapy.

The last thing that I think is most important, whether you're Black, white, purple, whatever, is that we have these insurance demands that sometimes may not allow us to get to all the things that we may see from an impairment base. By using the patient-reported outcomes, we are helping structure therapy in ways that matter most to the patient.

EBE: Well, that reminds me of this amazing quote that I was hoping I could work in today. I circled it in big yellow pen when I first read through your research. You said that it's really important because, due to the lower HRQL that we find in individuals with aphasia, it’s “imperative that the development of a treatment plan incorporates what the patient prioritizes. And it's imperative that clinicians have a way to measure these subjective attributes to make a meaningful impact on care.” That's what we want to do.

SELES GADSON: So important, because I think what we have to realize is that part of our role as the practitioners providing this skilled intervention, is really helping the individual get back to what they want to do. And I think that if we're not asking them what they want to do, then we're not really able to structure therapy in matters that mean the most to them, but also help them to start to recognize that as part of this identity with aphasia, that there's this new normal for them. Sometimes, individuals are going to rate themselves based off of what they used to be able to do. But if they know that one of their goals was to be able to talk on the phone, or to play bridge with their friends, and we worked on that in therapy, they're now able to look and see, before I scored my telephone confidence at a 50. Now I feel like I'm at a 90, and so sometimes that own self-recognition can support motivation, and can even support therapy, once insurance dollars run out.

EBE: I really appreciated doing this deeper dive into PROs as I read through some of your research. And one of the resources I came across was a really interesting table that talked about six categories of PROs. And I'll put a link in the show notes to a 2015 book by Cella, Hahn, Jensen and colleagues called “Patient-Reported Outcomes and Performance Measurement.” (They list six different kinds of PROs in a helpful table.) But the main category that your work is utilizing is actually these HRQL measures. You’ve been stating why it's so important. HRQL PROs help to frame diagnostics and treatment because you're trying to prioritize what the patient wants and needs-- what they're expressing.

SELES GADSON: Right, exactly. I think that one of the things that it's really important for practitioners to understand, is that these things are mandated by what we see in our scope of practice. When I say mandated, I mean we are called to reduce the cost of care by designing and implementing treatment that focuses on helping the individual. If we're not asking the individual what they want to get back to, then I think that we're putting ourself at a position that makes it more challenging to serve in that way.

EBE: One of the things we like to do on this podcast is to provide resources that will help clinicians think differently or do something differently tomorrow as they meet face-to-face with their clients. And one of the things I thought we’d put in our show notes is a link to the PROMIS website, because that was something you've used in your research. Do you want to explain a little bit about that website?

SELES GADSON: One of the things that I like about the PROMIS website is that it has a list of health outcomes available to use for a range of individuals-- for pediatrics, for adults. I like that it's free, most of them, and I think that it's a good place to start. Some of the outcomes on that website are also even appropriate for in acute care, meaning that they may not take a long time to administer. And so, I think that that's a good place to start.

EBE: Well, thank you. And I want to move right into this wonderful paper where you are co-author with Wesley, van der Stelt, Lacey, DeMarco, Snider, & Turkeltaub, that looked at how brain lesion location interacts with HRQL. Can you share a couple key takeaways from that paper?  I hope you'll highlight the one related to depression and HRQL. We're having a lot of research right now around the emotional impact of aphasia and how that will impact recovery outcomes as well. So, tell us a little bit more about that work.

SELES GADSON: We looked at the domains of health-related quality of life associated with specific deficits and lesion locations in chronic aphasia. We examined the relationship between HRQL using the Stroke and Aphasia Quality of Life Scale by Hilari and her colleagues, as well as a depression scale, and different impairment-based measures---our battery that we used here. What we found was that language production and depression predicted communication HRQL, meaning that those individuals that reported lower communication HRQL also had a significant depression associated with it. We did lesion symptom mapping in this study. Basically, what we were looking at is to see if HRQL mapped on to discrete areas of the brain. We found that individuals that reported lower psychosocial HRQL had inferior frontal and anterior insula lesions; where individuals who reported lower physical HRQL had lesions in the basal ganglia. This confirmed for us that even though HRQL is this subjective perception, we were seeing it map on to these very specific areas in the brain that also predicted some of the impairment measures that we know of.

EBE: That can get us to start thinking about if we have patients with these types of lesions, maybe to be more on the alert for depression. I think that's one point you made. But you also mentioned another important takeaway in the study about the impact of depression on HRQL related to the training of SLPs. This all ties together. What are your thoughts there?

SELES GADSON: I think that when we are recognizing that individuals with aphasia are experiencing a new normal, and I think that the research has been very clear on understanding that depression does relate to and contribute to one's communication. I think that there is an opportunity for speech-language pathologists to have more counseling classes. And again, make sure that we're tapping into what the patient wants to do in order to hopefully help mitigate some of those feelings of depression.

EBE: I really endorse building those counseling skills in our graduate programs for our students, so they go out feeling more confident and more skilled and knowing that that is going to be an ongoing journey as a speech-language pathologist to build that skill set.

SELES GADSON: And shameless plug, I think our episode six of Brain Friends is a mental health episode. I have one of my good girlfriend colleagues there who is a counseling psychologist. She shares with us helping skills for the practitioner, and we share on that episode10 skills that you can do as a clinician to support the person with aphasia.

EBE: Thank you for sharing that. That's really important. And again, the link to Brain Friends will be in our show notes. Let's take a moment and talk about how you connect this finding about depression to the role of social communication, because you said it was those scores that were down in your measure.

SELES GADSON: With that particular study or overall?

EBE: However you'd like to discuss it. I'm opening that door to you.

SELES GADSON: One of the things that we were seeing is that individuals were reporting the depression within this Communication HRQL domain. So even though we didn't dive into it too deep in this study, it was more of the correlation and recognizing that individuals that were reporting this higher level of depression, also have this higher level, or this lower report of communication HRQL, making those links specifically. I do have something that I'm working on right now, that will completely answer that question a little bit more solidly. I don't want to speak too much on this, so stay tuned.

EBE: Absolutely staying tuned, there's no question. You also had another article that I found intriguing-- An article with your coauthors, Wallace, Young, Vail, and Finn, a 2021 article that examined the relationship between HRQL, perceived social support, and social network size in Black Americans with aphasia. And that paper highlights that there's been little research exploring HRQL in Black Americans. Of the five factors that comprise HRQL, why did you decide to focus on social functioning? And specifically social support and social network in this study?

SELES GADSON: Well, that really came from the literature. One of the things that the literature said is that we knew that social HRQL contributed in some way, but we weren't sure what way. And we weren't sure what pieces of social functioning contributed. My apologies to the researcher who said it, but it set me up perfect for my dissertation work to say, “this is why I'm looking at social functioning in these two specific pieces,” because we didn't know. Was it social participation? Was it social network? Was it social support? That was one of the reasons why I wanted to pull out those two specific pieces. The other thing that was really important about this work was that it was the first study that really looked at what HRQL looked like in Black stroke survivors. We didn't know any of that. And so for me, it was really important to compare Black stroke survivors to normal aging Black individuals because I feel that for us to really get baseline understanding of what some of these factors are and how individuals respond in recovery, we have to compare them to their norm, or to other members in their community that look like them before comparing between Black and white or any other ethnic groups. This study is where we found that in terms of HRQL, the main difference between stroke survivors with and without aphasia and in our normal aging individuals, was that communication was the impairment. And then, with the social network and social support, we weren't seeing a difference between this homogenous group of Black people in those areas.

EBE: That takes me to my next question, your research noted that the Black survivors with and without aphasia, have smaller social networks compared to white stroke survivors. That's the data that we have based on that social network data. Even though you weren't trying to compare in this study, per se, you still made sense of that finding-- trying to make sure that we don't make assumptions, and instead look at different factors that could be at play. How did you make sense of that finding, the smaller network?

SELES GADSON: It was two things that allowed us to make sense of that finding. One was recognizing that in both groups, the stroke survivors with aphasia and our normal aging individuals, that because they were age matched, it could have been a factor of age--meaning that the individuals receiving the support quality and then their network, everyone was kind of in the same age group, and so, it was more of a factor of time of life versus actual culture.

But then a lot of that came through in some of the anecdotal reports, and things that we even circled on the scale that we used--we use the Lubben Social Network Scale. With some of those questions, one might be how many people do you feel comfortable sharing personal details with? And often times, we got this report of “just my husband”, or “only God”. And so, we were seeing that some of this really related to the traditional and cultural values in Black Americans, where you're not going to share a lot of stuff with a lot of people. You have your set group, your small network. And that's okay. That doesn't mean that you're isolated. 

EBE: I think another point you make, and maybe even thinking back to the ASHA Voices Podcast, why it's particularly important to target social communication. That is yet another life participation core concept. Do you want to speak to that for a moment?

SELES GADSON: I think the thing that we have to realize with social communication is that individuals, especially within the black community, they are social, they want to talk, they want to get back to doing and interacting with their community. And so, one of the things that that looks like is maybe being able to participate again in Bible study or being able to stand up and read a scripture. And the only way that you know that, is by asking them that on a patient-reported outcome.

I think that that's where that social communication piece is coming in. One of the things that I'm seeing with the Black aphasia group is that moment, that hour, where everyone is together, it's amazing. It's them using social communication. You spoke about how I said that that energized my research, and that was why--because I was on this call, and they were speaking about these things, that sometimes I feel like I have to explain to the powers that be why social communication or the LPAA approach is important. But here I was talking with all of these survivors, and they were telling me, I want to be able to communicate, I want to be able to do these things. It just really confirmed for me that this type of research, we were on the right path.

EBE: Right. And this is my chance for a “shameless plug” because of my life work, and that is just the power of groups. The power of groups is amazing.

SELES GADSON: You know, your life work and...

EBE: Well, we don’t want to go there, this episode is about you.

SELES GADSON: Okay. I'm telling you; I'll get into just how influential your work has been, even when I was working as a practitioner and doing group therapy, it was your work and your research that I was going to.

EBE: Well, I had the honor of getting to work with Dr. Roberta Elman, and starting the Aphasia Center of California and doing that initial research, that has been such a gift to me, so, but thank you, back to your work now. That's a great transition, because I'm going to bring us to your 2022 study, looking at how aphasia severity is modulated by race and lesion size in chronic survivors. That was an amazing study. I’m going to read another quote here from that study. And that is, “understanding the origin of disparities in aphasia outcomes is critical to any efforts to promote health equity among stroke survivors with aphasia.” You said this work led you to an “Aha!” moment. And I'd love for you to share more about that moment, and about this study.

SELES GADSON: Yes, this was one of my babies, I would say it was definitely a labor of love. And it's been well received. One of the things that led us to this study was that we were already aware of what the research was saying, in regards to the narrative of Black stroke survivors having these lower scores, they were having poor functional outcomes, longer hospital stays. I really wanted to understand what components neurologically, were playing into that. The research has shown that Black Americans often may have a larger stroke due to a myriad of factors-- delayed hospital arrival, not being able to receive TPA. But I wanted to know what factors neurologically were contributing to what we were seeing, not only in this baseline difference that we were seeing, but what was the bigger picture essentially.

What we found was that when we looked at race and lesion size, when we did an interaction of race and lesion size, that Black and white survivors with small lesions performed similarly. But larger strokes resulted in more severe aphasia for Black people, than white people. And that was something that we didn't quite understand, because if you think about it, the larger the lesion, the poorer your aphasia should be.

But in this case, the larger the lesion, the white stroke survivors were performing better and so we offered two reasons for that. One was the potential assessment bias-- that maybe with the larger stroke, there was this code-switching element that the Black stroke survivors just weren't able to do. And we were seeing that in the larger strokes, and it wasn't being picked up in the smaller strokes. Then the other was the disparity that I had mentioned earlier, which is that access to rehabilitation. It might have been more evident-- we were seeing some of those disparities in the larger strokes. We know that individuals that come from higher earning SES groups have greater access to rehabilitation services like speech and language. That was our other reason, that we were wondering if that's why we were seeing that outcome.

EBE: This reminds me some of the research that Dr. Charles Ellis has been doing. I attended his keynote speech at the IARC conference in 2022 that talked about understanding what is happening upstream, because it's going to impact what's happening downstream. In terms of health disparities, it's going to have an impact. I think your research supports that. We need to learn more about it and do the research you're doing.

As you reflect on your findings across these amazing studies, this research that you've been doing, can you offer to our listeners some tips on how to have more confidence with intercultural contact?

SELES GADSON: That's a great question. I think the first thing that that you have to do is put yourself in places where you are connecting with people that don't look like you.

EBE: I agree. And that can be hard and challenging to do.

SELES GADSON: It can be, but one of the things that I say is that it goes back to some of the things that Dr. Ellis has talked about, which is being intentional. That might mean going to a different side of the neighborhood to support a Black owned business, and being within that space, to feel how it feels to be around different cultures.

The other thing that I think is really important, and it comes out of literature that looks at reducing racial bias in health care, which is to avoid stereotype suppression. So oftentimes, people may be thinking something and they don't want to share it, or they try to suppress it. And the reason why that's negative is because stereotype is a cognitive organization strategy that we use. And where it becomes negative is that if you're having these stereotype ideas, or you're just not sure, if you're not able to express them within a space that you feel comfortable with, then you suppress them. And then it kind of comes out in therapy. And so, I think that those are two huge things.

And then the last thing that I would say is that it's really important to build partnerships. And so, building partnerships, either with local churches, within the university area, or just seeing how you can serve in order to help create some of that confidence. But you have to put yourself out there and not wait until therapy day.

EBE: Wow, thank you for those tips. And one of them reminded me of something, a tip that a local educator suggested that, even if you don't feel like you're in an environment where your everyday social context might put you with people who look different from you, that you can still listen to other voices by listening to podcasts, sign up for podcasts, sign up for Twitter feeds of people with different voices, so you can start being present to that conversation. So that was something that I have found useful and really good advice as well.

SELES GADSON: So true. The other thing that I did, even someone who identifies as a Black American when I was doing my dissertation work, and previously before some other things in my career, I noticed that perspective taking was a huge piece--putting myself or imagining myself in the individual’s shoes.

And so, for me, that meant that I went to Black museums and exposed myself to different cultural experiences. I wasn't going into some of these spaces, whether it was collecting data or even working with individuals from other earning communities, with some type of privilege. So even in that sense, I wanted to make sure that I checked my privilege as well by doing that perspective taking.

EBE: Thank you,. And this discussion could keep going, but I know our time is getting tight here. This whole effort that you put in your research of looking at HRQL measures reminds me of some of the work that I've really admired by Hilari and you had a wonderful story you could share about her, your interaction and your use of her work. Would you like to share that quickly?

SELES GADSON: Oh, she's so awesome. I was sharing how when I first was diving into this literature, her work was one of the pieces that I found, the Stroke and Aphasia Quality of Life Scale. I reached out to her and she shared this scale. And a couple of years later, I attended the International Aphasia Rehabilitation Conference in London. And she sat down with me. I asked her if she had any time, if we could just talk, and she was so welcoming. We sat down, and she might not even remember this, but even in that moment of us being able to talk about these things that we were both so passionate about, she just really spoke to me and encouraged me. And it's so funny, because now as I publish and do different things, my mom always says, “you gonna be just like Dr. Hilari.”

EBE: Let's just do a shout out for mentorship, for people who take the time, and feel committed and passionate. Again, we're using that word again today, passionate, to support the new voices that are coming into the field. So that's the gift of mentorship. And in this whole discussion, you and I also talked about how important it is to be inclusive, and we talked about how HRQL measures sometimes are harder to use with people with severe aphasia and how they can get excluded from research. It's hard enough to get people with aphasia into the research, right? There's work by Shiggins and her colleagues looking at how often people with aphasia are excluded. But you made a good point about ways that we can include people with more severe aphasia. Do you want to mention that?

SELES GADSON: I think one of the things that we have at our fingertips, and we know just from our training, is to use different visual cues to support those individuals that might have more severe aphasia. One of the things that we highlighted in the 2020 paper looking at the psychometric properties of quality of these patient reported outcomes, was that there are certain assessments that are perfect for individuals with severe aphasia, assessments like the Assessment for Living with Aphasia (ALA), because it has the pictures available and it has simple language. Just recognizing that even by using some of these compensation tools, whether it's pictures or modifying the language, we can still get the individual’s perspective of what they want in therapy just by using some of these modifications.

EBE: This reminds me, I can put one more link and resource into the show notes, because the Center for Research Excellence in Aphasia offers this wonderful speaker series. And there was just an excellent recent session by Dr. Shiggins on including people with aphasia in research. So, I'll put that link in. I want everybody to listen to that presentation.

And finally, as our closing question for today, Davetrina, if you had to pick only one thing we need to achieve urgently as a community of providers, of professionals, what would that one thing be?

SELES GADSON: I think we have to start using patient-reported outcomes. I think that if you were doing a clinician-reported outcome to assess the impairment, paired with that has to be some level of patient-reported outcome that will give you insight into what the patient wants to do. It’s no longer optional. I think that we have to make it a paired thing with our clinician-reported outcome, is getting the perspective of the patient.

EBE: I so agree with you, thank you. Thank you for this wonderful interview today. I really, really appreciate it.

SELES GADSON: Thank you.

EBE: And I want to thank our listeners for listening today. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. And there, you can also become a member of this organization. Browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. For Aphasia Access Conversations, I'm Ellen Bernstein Ellis and thank you again for your ongoing support of aphasia access.

References and Resources

Brain Friends Podcast:

https://www.aphasia.org/stories/brain-friends-a-podcast-for-people-with-aphasia/

https://www.facebook.com/groups/1563389920801117

https://open.spotify.com/show/5xgkrhUhEIzJgxpRXzNpBH

 

Centers for Disease Control and Prevention (CDC) HRQL website: https://www.cdc.gov/hrqol/concept.htm  

 

National Aphasia Association  Black American Conversation group registration:

The Black American Aphasia Conversation Group meets through Zoom every other Monday at 4:00pm EST (1:00pm PST) . If you are interested in joining this group, please complete the form https://docs.google.com/forms/d/e/1FAIpQLSfJN9VWjrujhebT8Z48bqDZePOHYotipFC34S8T0X8_o8rG-g/viewform

Patient Reported Outcome Measurement System (PROMIS) https://www.promishealth.org/57461-2/

 

Cella, D., Hahn, E. A., Jensen, S. E., Butt, Z., Nowinski, C. J., Rothrock, N., & Lohr, K. N. (2015). Patient-reported outcomes in performance measurement. . Research Triangle Park (NC): RTI Press; 2015 Sep. Publication No.: RTI-BK-0014-1509ISBN-13: 978-1-934831-14-4  https://www.ncbi.nlm.nih.gov/books/NBK424378/

 

Gadson, D. S., Wallace, G., Young, H. N., Vail, C., & Finn, P. (2022). The relationship between health-related quality of life, perceived social support, and social network size in African Americans with aphasia: a cross-sectional study. Topics in Stroke Rehabilitation, 29(3), 230-239.

 

Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728.

 

Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728.

 

Gadson, D. S., Wesley, D. B., van der Stelt, C. M., Lacey, E., DeMarco, A. T., Snider, S. F., & Turkeltaub, P. E. (2022). Aphasia severity is modulated by race and lesion size in chronic survivors: A retrospective study. Journal of Communication Disorders, 100, 106270

 

Gray, J. D. (2022). Transcript: ASHA Voices: Confronting Health Care Disparities. Leader Live.

https://leader.pubs.asha.org/do/10.1044/2021-0902-transcript-disparities-panel-2022

 

Law, B. M. (2021). SLP Pioneers Research on Aphasia Rehab for African Americans. Leader Live https://leader.pubs.asha.org/do/10.1044/leader.FTR4.26092021.58

 

Lubben, J., Gironda, M., & Lee, A. (2002). Refinements to the Lubben social network scale: The LSNS-R. The Behavioral Measurement Letter, 7(2), 2-11.

 

Shiggins, C., Ryan, B., O'Halloran, R., Power, E., Bernhardt, J., Lindley, R. I., ... & Rose, M. L. (2022). Towards the consistent inclusion of people with aphasia in stroke research irrespective of discipline. Archives of Physical Medicine and Rehabilitation, 103(11), 2256-2263.

 

Shiggins, C.  (2023) The road less travelled: Charting a path towards the consistent inclusion of people with aphasia in stroke research.  Aphasia CRE Seminar Series  #36 (Video) https://www.youtube.com/watch?v=sqVfn4XMHho

         

Welcome to the Aphasia Access Aphasia Conversations Podcast. I’m Katie Strong and I’m a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Debra Meyerson and Steve Zuckerman. We’ll be talking about their bike ride across the country, Stroke Across America, as well as the importance of identity and storytelling in a person’s journey with aphasia.

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

Debra Meyerson was, until her stroke in 2010, a tenured professor of organizational behavior at Stanford University’s School of Education.  Debra’s most significant contribution from that period was Tempered Radicals:  How Everyday Leaders Inspire Change at Work (HBS Press, 2001). More recently, she authored  Identity Theft: Rediscovering Ourselves After Stroke (Andrews McMeel Publishing, 2019) and is co-founder and co-chair, with her husband Steve Zuckerman, of Stroke Onward, a nonprofit working to ensure stroke survivors and their supporters have the resources needed to rebuild identities and rewarding lives. 

 

Steve Zuckerman is, along with Debra, co-founder and co-chair of Stroke Onward; he has been Debra’s care partner since her stroke in 2010.  He has held leadership roles at Self-Help, a nationally recognized economic justice nonprofit, since 2006 and still serves part time as a Senior Advisor.  Before that, he was a managing director at a private equity firm.   

 

In the summer of 2022, Debra and Steve led Stroke Across America – a 100-day cross country bike ride, from Oregon to Boston, to raise awareness for stroke, aphasia, and the importance of the emotional journey in recovery.

 

In this episode you will:

• be inspired learning about the bike ride, Stroke Across America, and its effort to raise awareness about the emotional journal of living with stroke and aphasia.
• learn about the power of story in reconstructing identity in people living with aphasia.
• become aware of Stroke Onward’s mission to support the emotional journey of rebuilding identities and rewarding lives.

 

Katie: Welcome Debra and Steve. I’m so happy that you are here with me today.

Debra: Thank you so much, Katie.

Steve: It's great to be here.

Katie: Well, I'm just so excited for our listeners to be able to hear about what you've got going on, and I'd love to start with what you were up to last summer. You did an amazing bike ride across the U.S. called Stroke Across America. Congratulations! I mean it was a big deal! Can you tell us about it?

Debra: Sure. Stroke Across America was a bike ride across the US and Canada to raise awareness about stroke, brain injury and aphasia. We wanted to spotlight the emotional journey after stroke. How do we rebuild our identities and live meaningful lives? We rode 4,500 miles over 100 days, traveling from Oregon to Boston. There was a core team of six riders and others who joined us for portions of the ride. We became a family. I didn't expect that.

Katie: That's fantastic. Tell me about who rode with you and became family.

Steve: As Deb said, we had six core riders most of the way across the country. In addition to the two of us, a woman named Whitney Hardy, who's actually a close family friend. She’s a young woman in her thirties who unfortunately suffered a traumatic brain injury about four years after she graduated from college and suffers no ongoing physical disabilities but has some cognitive issues and memory issues. She rode with us from the beginning to the end. Another stroke survivor was Michael Obel-Omia, who I know is an active participant in Aphasia Access. Michael is a stroke survivor who also lives with aphasia. He joined us about 15 days late because his son was graduating from college, so he joined us in Missoula, Montana. We had two wonderful summer interns, Emily and Alex. We met Emily through her grandfather, who was a stroke survivor and hoped to ride with us but didn't end up riding with us. Emily and Alex are both students at Washington University, St. Louis. They traded off, one rode and one worked, every other day. We can't say enough about the wonderful, not just competent and great work they did, but the energy they brought. They really helped make it special. I guess our seventh team member was our then roughly one-and-a-half-year-old golden doodle named Rusty who was along for the ride. Sometimes she rode in a trailer behind our bike and sometimes in one of the support vehicles. We had a group called Bike Eternity, a gentleman named Arlen Hall, who really arranged all the on-road logistics and the route. He and his team were just fabulous in terms of just making everything work. That was our family.

Katie: It's quite a crew. Fantastic. I was wondering if you could tell us about a favorite experience from the ride.

Debra: We hosted sixteen community events across the country. They brought together survivors, families, friends, stroke care professionals, and more. It was really inspiring to be with all these people. Building community and collaborating with others is the only path to real change. And you were at the Ann Arbor event?

Katie: Absolutely. Yeah. My friend Becca and I came down to the Ann Arbor event. I think it was Dexter or something.

Debra: Yeah

Katie: Boy, did we show you how we can have rain in Michigan!

Debra: I know. Oh, yeah.

Katie: Oh, my goodness. Yeah, it was great. Even though we had rain, there was so much great energy around the event. I can feel what you're talking about.

Steve: I think the events were kind of really the most powerful experience. But Deb, you were going to talk about one particular ride you loved.

Debra: I loved riding past Cameron Pass in Colorado for 30 miles up and 40 miles down.

Katie: Wow!

Steve: Yeah, so just to add a little bit to that, because I think that one day of riding really, I mean, every day was fantastic. We just loved the riding. But this one stood out for all of us. It was from a town called Walden in Colorado, a bit east of Fort Collins to a campground called Stove Prairie Landing. The pass we rode over was about 10,276 feet, so we were up there. And as Deb said, we rode up for 30 Miles about 2000 feet, but then got to come down 4000 feet. The whole ride was in a canyon with dramatic mountains and a river that we happened to catch at the right time of the year because the snow was melting. So, it was just a rushing river where we got the sound, the sights, and sometimes the spray of rapids as we're cruising downhill. And then there was just a perfect riverside campground at the end. It was just sort of a magical day.

Katie: Yeah. As you were describing it, I wanted to use the word magical! So, I agree. Yeah. Fantastic. I'm sure it wasn't all easy street. I was wondering if you could tell us one of the hardest things about planning such a big activity. I mean, this was a big event. You had several events along the way, but you know, tell us a little bit about the planning.

Debra: Organizing this event was so hard, but it was so important and so impactful. We had sixteen events: three events before we started riding in Palo Alto, Bend, and Portland, eleven along the way, and two in Boston after we finished. We had so much to do after the rides and after dinner, such as PR, social media, Stroke Onward, events, and a documentary film. There was so much to do! We are really tired.

Steve: Yeah, I think the biking certainly was a lot, but we weren't trying to ride fast. You know, one thing I say about biking is, if you want to ride long distances, you just have to ride long distances. You get used to it. So, that didn't really feel like a strain for us. And the organizing of the route, particularly with the help of Arlen, kind of got done ahead of time. It was a lot of work, but he's a pro and we put it together. But it was really, I guess we're “Type As” who can't get out of our own way. We built so much into the trip that it really was those evenings and our theoretical “rest days,” which were nonriding days. We renamed them “stress days.” We felt like we had to get everything done. So, you know, that was the hardest part of the trip. It was just how much we packed in. We jokingly say, but it may not be a joke, “that someday we want to ride across the country where we have absolutely nothing to do but ride across the country.” That way, we can enjoy the evenings and the rest days, do a little more touristing, and spend time meeting people along the way.

Katie: Yeah, it was very focused. You were very intentional about gaining awareness and supporting community. And I'm sure that it sounds like there was lots to do beyond just pedaling. You mentioned earlier about a campground, but I'm curious, where did you stay along the way?

Steve: Our main support vehicle was an RV, pulling a trailer with a lot of gear. We organized mostly around staying in campgrounds. Partly to keep the cost down and partly because we didn't want to have to stay rooted to where the hotels and motels were. And so, Deb and I got the privilege of sleeping in the RV. It was a small RV, but very comfortable. And the rest of the group was camping, so we had tents and cots, and all you would need for relatively comfortable camping. About one or two nights a week, we would end up staying in a motel, partly just to give the folks who are camping a little bit of a break. We actually came to enjoy the RV so much; we almost preferred it to the hotels. Then, one of the real highlights of the trip was we were able to see a lot of friends going across the country. Particularly in the cities where we held events. We almost, with maybe one exception, always had a rest day connected to the event. Probably at about half of those we ended up staying with friends. That was really special to be able to involve more people in our lives in the journey.

Katie: Yeah, I was thinking when you were in Ann Arbor. Deb, you had a number of colleagues and friends that came to the Dexter event.

Debra: Yes, in Detroit, two days later, we met with my middle school buddies, Debbie and Debbie and Debbie.

Katie: I love that, fantastic! That’s great! Well, riding across the country is a huge endeavor. What made you decide to do it?

Debra: Steve.

Steve: Deb would say, “Steve made me decide to do it.” Well, actually, it is true. I had a close friend from college who rode across the country right after we graduated from college. From that day, I always said, “that's something I want to do”. As I got older and older and hadn't done it, it was kind of rising to the top of the proverbial bucket list. But cycling really has been a huge part of our recovery from Deb’s stroke. It has been the best way that we can continue to do a lot of the things we love - exercise, adventuring, seeing new places, and spending time with friends. We had never ridden a tandem before Deb’s stroke, we rode individual bikes. It was a bit of a challenge for Deb to give up control, understandably. But when we saw the opportunity to do it with a purpose, that's what kind of got us really excited. We were just starting to build Stroke Onward, we wanted to build awareness for the importance of the emotional journey, and events create good opportunities to attract attention. So, what better thing than to do something you've always wanted to do and do it with a purpose? That’s kind of how we got going.

Katie: Well, it is inspirational, and I know a big focus of the trip was to raise awareness about stroke and aphasia. Debra, for people who might not know, could you share a little bit about your life story.

Debra: Of course. My life story started earlier. In 2010, I was a professor at Stanford. I studied, taught, and wrote about feminism, diversity, and identity. Then, I had a severe stroke. For three years, I did therapy almost full time. I had to get my old life back, but I couldn't. My disabilities, especially aphasia, forced me to leave my job at Stanford. Giving up tenure was like a second punch in the gut. It was a huge trauma on top of my stroke trauma that started my identity crisis. Who am I now?

Katie: So, Debra, I think that's what sparked you writing a book called Identity Theft. Can you tell us a little more about that?

Debra: I had written two books before my stroke. I decided to write another book after my stroke, Identity Theft. Writing Identity Theft became my learning journey. It has helped me rebuild my identity. It took me five years, and I learned to accept lots of help. No one told me rebuilding identity is so central to recovery. I learned firsthand that it's so important. While researching Identity Theft, I learned that other survivors think so too. They had no advice and support for this. 

Steve: Maybe I'll add. Deb mentioned doing research for Identity Theft. From the very beginning when Deb decided to write a book, she didn't just want to write about her story. She was an academic, she wanted to bring in other people's points of view. And so, Deb interviewed twenty-five other survivors and probably another thirty-five people who were care partners, friends, families, and professional caregivers. Kind of the idea being that she wanted to be able to write about a diversity of people and stroke experiences because that would make the book more relatable and more accessible to more people. And that really kind of gets at one of the things that really struck me about Deb writing Identity Theft. In many ways, the writing of the book really reflected her personal journey. That at the beginning, she was kind of writing it to prove she could, she didn't want to let go of that identity as an academic. But very quickly, she realized that the process of writing it, as Deb said, was kind of her journey. She was able to turn her knowledge of identity and the lens on herself to really help rebuild her identity and her life. But along the way, she realized, “Man, there are so many other people out there who aren't being told about this and need resources.” I say this all the time, choosing to write a book when you have aphasia has got to be one of the bravest decisions because it puts you face to face with your frustrating disability every day. And there were a few times when Deb came downstairs and said, “I'm done,” “I'm not finishing the book,” “This is too frustrating,” and “I can't stand it”. But it was that knowledge that it could help other people that got her to push through that frustration. And that gets to kind of one of the big themes of our work, which is about finding purpose and having purpose and how that's often our biggest motivator in life, what we can give. So, that's kind of a little bit of the history of the book.

Katie: I appreciate you sharing that. And as you were both talking, you were talking about this journey. And you know, thinking about the story and the writing and the rewriting of your identity. It really isn't about the product, not necessarily the book, which maybe initially that’s what you were interested in Deb. But really, the journey is where all the work and the reintegration of who you are and who you're going to be is. very powerful. Very powerful. It's such a great read. I've enjoyed the book very much. So, you have even moved forward beyond a book, and you've started a nonprofit. It's been established for a little bit now. Can you tell us about your nonprofit, Stroke Onward?

Debra: Yes. I created it three, no, four years ago? Our mission is to ensure stroke survivors and their supporters have those tools necessary to rebuild identities and rewarding lives. The vision is a stroke system of care that fully supports every survivor's emotional journey and recovery.

Steve: Maybe I'll add. I think, clearly, the issues of critical care and helping people survive a stroke, and then all the work on rehabilitation is critical. What we saw is that a lot of people don't get all their capabilities back. It's almost like, well, if recovery means rehabilitation, then does that mean everybody who doesn't fully recover their capabilities, has a failed recovery? And we were just unwilling to accept that. Recovery had to mean more than just capabilities. That's why we decided to really focus on that next step in recovery, which is the emotional journey. So, we really think about our work around three areas. One is raising awareness, just that this whole issue of the emotional journey is really important and doesn't get enough attention. Even if people realize it's important and say, “Well, gosh, where can I get help with this?” There aren't enough resources out there. You know, at the end of the day, as Deb said, “it's about system change.” That we would hope that 10 years from now, a person who suffers a stroke and their family enters a system that not only provides good critical care and points them in the direction of good rehab, but also creates a framework and resources for this part of recovery, for the emotional journey. I won't go through all the actual things we do. Hopefully, you'll be able to post the website and people can go and see more about stroke onward, www.strokeonward.org, easy to remember.

Katie: Absolutely. 

Debra: And there’s the book discussion guides.

Steve: Yeah, well, one of the places in that the speech therapy community has been so supportive and such a wonderful partner is with the creation of our book discussion guides. Our colleague, Jodi Kravitz, led the creation so that the book can be more accessible. There's a guide, you know, with the idea being a group of people with aphasia can read the book together and have a facilitated discussion with a guide. But also, we created separate guides for families, speech therapists, and other health care workers. Just again, the whole idea of trying to make the material accessible, digestible, and useful for people who are going through what we went through, which was the identity crisis and having to rebuild our lives.

Katie: Absolutely, we use the resources for our local book club here at Central Michigan University and our Lansing Area Aphasia Support Group. The materials were great, but the book just brought forth so much rich discussion.

Debra: Yeah.

Katie: You know, not all of it was easy to read. There is some tough stuff; you don't skirt the issues. I think it really was a very meaningful experience for our members and the students that were a part of the group to be able to hear the journey, to hear what maybe hadn't been addressed, to hear how people had moved forward with things, and the areas where we really do need to be thinking more about as healthcare providers. It is important that we can support the whole person and not just fix the physical or the language. It’s a whole emotional journey that you're moving forward with, which in Stroke Onward is really important. Well, as you know, a lot of my work is about the importance of storytelling. Deb, I was wondering if you could talk about how storytelling impacts your work. Maybe even share a few stories from your work.

Debra: Sure. Storytelling is so important. We are always changing, and our stories evolve over time. Storytelling helps us navigate the emotional journey after a stroke. And in my book, Identity Theft, I share my story and the stories of others so that survivors don’t feel alone. I would like to share one story that helped me recognize that life could be good after my stroke. Seven months after my stroke, my friend Ann invited me to her 50th birthday weekend in Palm Springs with tennis, hiking, talking, and biking. I said, “No...no, no, no.” I would need so much help, and most of all, I could barely talk at all. Conversations would be loud and lively. I would feel frustrated, jealous, and sad. Kim, my friend, said she would help with everything. She said she would help me have fun. She was there for me. I was nervous, but I decided to give it a try. At first, I was determined to be the “old Deb” at the party, but the frustrations were constant. Conversations were too fast, and the friends trying to help did not give me time to find the words. I was frustrated constantly, but I decided to enjoy myself anyway. The night of the birthday party, I danced a lot! Great music, so fun. I was not the “old Deb” anymore, I was a newer version of myself. I could spend my time with my friends dancing, laughing, and enjoying what is essential in my life: friends, community, and fun. It is so hard, but it is so important. Pushing myself to be social and telling stories about it has been so important to my recovery.

Katie: Thanks for sharing, it's a great story. And well, I mean, you sound like you have fabulous friends, but it sounds like Kim really was one that stuck around and was willing to help you through some of that change.

Steve: And if I can add one other story, which kind of gets to how Deb reclaimed some of her old identity. In this case, her identity as a mom, and Deb tells the story in the book. When our daughter Sarah, who at the time of Deb’s stroke was 15 and was not a big dater in high school. But about a year and a half after Deb’s stroke, she got invited to the prom her senior year and she started going out with this guy. And I kind of said to Deb, you know, you never had that mother daughter talk with Sarah. And Deb hadn't been too active in parenting for that year, year and a half because she was you know, fighting for her recovery. I said, “You know, maybe you should be the one, as her mom, to have the talk.” And so, we kind of told Sarah that we wanted to talk to her. We were all standing around the island in the kitchen. Sarah kind of knew something was coming but didn't quite know what. And you know Deb’s speech was nothing like as good as it is now back then. You could just see the concentration on her face trying to figure out what she was going to say. And she kind of slowly said, “Boyfriend? Yes. Pregnant, no!” And that has been dubbed by all of our friends for the world's most efficient and effective mother daughter talk. It was funny; we all just burst out laughing. It was really a great kind of wake up for us that Deb could reclaim a lot of aspects of her identity, but she would just have to live them out differently. And that just because they had to be different didn't mean she couldn't live them out. That was one of our favorites.

Katie: That is a good story. What I love about your sharing of the stories and where your work brings storytelling to life. One of the things that's happening in the literature that's coming into practice, particularly in the UK, and over in Australia, and hopefully maybe over here in the U.S. sometime, is this idea of step psychological care for aphasia. We'll put something in the show notes if listeners want to check this out a little bit more. This idea consists of different tiers to support mental health and particularly depression in people with stroke and aphasia. At that bottom tier, which is supposed to be accessible to every stroke survivor, one of the level one interventions is storytelling. So, it’s that powerful, you know. It's not just fun to tell stories; it's very important to who we are as people and integrating our mental and emotional health into who we are.

Steve: Deb, did you want to mention somebody you interviewed for the book that particularly talked about storytelling?

Debra: Yes. Randy enjoys storytelling, and he is a stroke survivor from St. Louis who I interviewed for the book. Randy and his wife, Rose, started their own aphasia meetup group. Social connections were really important to him.

Steve: And he talked a lot about how he gradually got more and more comfortable telling his story and how much that helped him. He spoke at our community event in St. Louis, and I thought he kind of stole the show when he said, “My stroke changed my life, but it will not hold me back.” I just kind of well up because that's what it's all about. And he said it so eloquently.

Katie: Powerful, powerful. Well, Debra, can you tell us a little more about this idea of identity?

Debra: Sure. Barbara Shadden and you, Katie Strong, I am so thankful. Identity is our narrative about ourselves over time. We have not one static identity, we have multiple identities. We are always changing. Relationships like friends, family, colleagues, and others are a big part of making who we are. Identity is a choice. Instead of asking, “Who am I now?” ask “Who do I want to be now?”.

Katie: Powerful. I like it. Debra, could you talk about aphasia specifically, and how that plays into your views on identity and your recovery?

Debra: Yeah. Communication is so central to everything we do and to my identity. Having communication challenges just makes everything harder.

Steve: And I'll just add that sometimes in recovery, the physical stuff, you know, trying to walk better or get use of a right arm back, would tend to be the focus. But in reality, the aphasia is really the thing that has challenged her identity the most because it was the communication that forced her from a career she worked so hard to achieve. Also, friends and interaction are so central to who Deb is, and that has just gotten so much more challenging. So, not to diminish the impact of physical disabilities, but aphasia is big and really central to the recovery process.

Katie: And I think you know, you mentioned Barbara Shadden earlier, but you know her idea of identity theft. We are the stories that we tell and when we have trouble with the that one thing that we use for story, that tool of language that is impaired, or changed or broken, or, you know, smaller, or however we want to view it with having aphasia, it really makes a significant impact on how you view yourself and how you can connect with other people that are important to you.

Debra: Yeah. I agree completely, and I am so lucky to have friends and family to support me.

Steve: And I think what you said, Katie, is so powerful, and it's why we talk a lot about how few people really know and understand what aphasia is. I think that's because there's this, whatever the opposite of a virtual cycle is, it's the doom loop cycle of aphasia. Aphasia impacts people's identity so that they don't want to speak if they have aphasia because it's not consistent with who they think they are. But because people don't want to speak with aphasia, nobody knows what it is. And so that, you know, makes it that much harder to speak with aphasia. And I think, you know, that gets to this notion of purpose sometimes driving people through what's hard and what's uncomfortable. That was true for Deb and played a role in making a decision that “Yeah, I really wish I could speak the same way I used to.” We've had so many arguments about Deb saying, “I was terrible," because she was evaluating her speaking performance against the way she would have done it before her stroke. Yet, Deb's been willing to push through that, to be out there. You know, that's part of our work of trying to network with other people and encourage people to get out there and tell their stories because that's the only way the world is going to learn.

Katie: And that you're doing, which is so appreciated and inspirational. Steve, I know your work is as much about supporting care partners and other family members as it is about supporting survivors. Can you share a bit about your journey through all of this?

Steve: Oof, it feels like that could be a podcast in and of itself. But you know, I think maybe the nugget that I'll share is it's pretty obvious that people who are close to somebody who has a stroke or aphasia, our lives are going to change. Things we used to do; we can't do. Help we didn't used to have to provide, we do have to provide. I think the real “aha” for me personally, was that I needed to focus on my identity change as well. It wasn't just Deb's identity. And for me personally, and I've talked to a lot of care partners about this, really embracing “care partner” as part of my identity. Not just something I had to do to support Deb, but part of who I now am. This was really important to me because that mind shift actually helped me resent some of the changes in my life less. It was just, like Deb said, our identities change, our lives change, this is just another change. If I can embrace that as a change in who I am, then those just become part of life. Not that they're not frustrating sometimes, but it's a lot better. So I think, you know, Sarah, our daughter, is when you talk about the impact on family. And again, this story is in the book as well. But again, not just the impact on her life, but the impact on her and who she was. About two years after Deb’s stroke, she gave a talk to her whole school community. Sarah talked about the experience of watching her mom have a stroke, and how she wanted to be like her mother and be strong and tough it out. People were offering to help, and she said “No.” She was going to soccer practice, she was doing all of her assignments, and she was visiting Deb in the hospital; she was going to tough it out because she wanted to be strong. Then, she started to see Deb accept more help and she started wondering, well, maybe I can accept some help. She started to let her friends in and let herself be vulnerable. She kind of realized that real strength isn't about toughing it out, real strength is about being vulnerable and using your relationships. Sarah’s an athlete, and she ended the talk with, “Even the world's strongest person needs a spotter.” I well up just telling the story. When she told it, we went through boxes of tissues. But that changed her as a person in ways that actually, you know, maybe she would have gotten there eventually, but not when she was 17. I think that's what we talked to a lot of the families and care partners about. Allow yourself to think about how this experience can change you as a person and try to embrace some of that change where you can.

Katie: Powerful.

Debra: And the families, Danny, Adam, and Sarah. The families are affected.

Katie: Yeah. Aphasia just doesn't happen to the person who has it. Well, Deb, you mentioned that there is one part in your book that sums up a lot of what you were trying to share with other survivors and their families. Maybe we can end with you reading from that paragraph.

Deb: Faced with a trauma like stroke, the opportunities for both challenge and growth are great. We can clarify what we value most in life, set goals that will help us meet them, and achieve repeated small wins in pursuit of them. In this way, we can achieve not just recovery, but satisfying growth and fundamental meanings in our lives.

Katie: I love it. Yeah. Challenge and adversity, thinking forward into the future, and having goals, purpose, and meaning. It’s what life is about. Well, this has just been a fabulous conversation. Thank you both for taking time to share with us a little bit about what you've been up to over the summer and inspire us with some of your stories.

Debra: Thank you.

Steve: Thank you.

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

 

Information about Stroke Onward

 

• https://strokeonward.org/ 
• Stroke Onward website
• Instagram
• Facebook
• Twitter
• YouTube
• Identity Theft Book Club Materials developed by Jodi Kravitz, Ellen Bernstein-Ellis, Liz Hoover and Stroke Onward https://strokeonward.org/bookguides/

 

Resources Related to Identity and Aphasia

 

Meyerson, D., E., (2003). Tempered Radicals: How Everyday Leaders Inspire Change at Work. Boston, MA: Harvard Business School Press.

Meyerson, D. & Zuckerman, D. (2019). Identity theft: Rediscovering Ourselves After Stroke. Andrews McMeel Publishing. www.identitytheftbook.org

Shadden, B. (2005). Aphasia as identity theft: Theory and practice. Aphasiology, 19(3-5), 211-223. https://doi.org/10.1080/02687930444000697

Strong, K., & Shadden, B. (2020). The power of story in identity renegotiation: Clinical approaches to supporting persons living with aphasia. Perspectives of the ASHA Special Interest Groups. https://doi.org/10.1044/2019_PERSP-19-00145

Listen to Episode #5 of Aphasia Access Conversations Podcast featuring a conversation between Katie Strong and Barbara Shadden about the important role story has in supporting identity in people who are impacted by living with aphasia. https://aphasiaaccess.libsyn.com/insights-and-aha-moments-about-aphasia-care-with-professor-emeriti-barbara-shadden

 

Resources Related to Stepped Psychological Care

Listen to Episode #34 of Aphasia Access Conversations Podcast featuring a conversation between Jerry Hoepner and Ian Kneebone about stepped psychological care and other research related to supporting the emotional journey of living with stroke and aphasia. https://aphasiaaccess.libsyn.com/34-in-conversation-with-ian-keebone

Kneebone, I. I. (2016). A framework to support Cognitive Behavior Therapy for emotional disorder after stroke. Cognitive and Behavioral Practice, 23(1), 99-109. https://doi.org/10.1016/j.cbpra.2015.02.001

Ryan, B., Worrall, L., Sekhon, J., Baker, C., Carragher, M., Bohan, J., Power, E., Rose, M., Simmons-Mackie, N., Togher, L., & Kneebone, I. (2020). Time to step up: A call for the speech pathology profession to utilise stepped psychological care for people with aphasia post stroke. In K. H. Meredith & G. N. Yeates (Eds.), Psychotherapy and aphasia: Interventions for emotional wellbeing and relationships (pp. 1-16). Routledge.

  

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

Cite as: Bertram, M., Isaksen, J., Toft, L. E., Olsen, A. M., & Breckling, M. (2021). Evaluering af projekt Forløb for borgere med afasi samt afrapportering af implementeringsopfølgningen KomTil – fra udvikling til drift. Unpublished report from University of Southern Denmark.

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

I'm today's host for an episode that will feature Kathryn Shelley, former Aphasia Access President and co-founder and current Grant Director for the Aphasia Center of West Texas. Kathryn was our guest for episode #1 of the Aphasia Access Conversations Podcast and we are delighted and honored to invite her back to be the guest on this 100th episode of our Aphasia Conversations Podcast. We'll discuss financial sustainability of Life Participation programs across a variety of settings, with a focus on best practices for fundraising.

Guest bio

 

Kathryn Shelley has over 30 years’ experience in nonprofit management, board leadership, strategic planning, marketing, and fundraising. She is co-founder, prior Executive Director, Marketing & Development Director, and currently the Grants Director for the Aphasia Center of West Texas, one of the earliest community-based nonprofits in the U.S. to incorporate the Life Participation Approach to Aphasia. Prior to her father’s stroke in 2001 and his resulting aphasia, Kathryn was lead designer and co-owner of a marketing and graphic design firm in Austin Texas.

Listener Take-aways

In today’s episode you will:

• Hear how two events involving chocolate and rock and roll have grown awareness and funds.
• Find out how typical stages of organizational development might influence your fundraising capacity.
• Gain practical tips for sharing the impact of your aphasia program to help raise awareness and funding.
• Learn about some resources available for supporting your nonprofit know-how.

Show notes edited for conciseness and clarity

Ellen Bernstein-Ellis

So, Kathryn, I want to give you a shout out and just a great big welcome. It took 100 episodes, but thank you for coming back.

Kathryn Shelley

Thank you so much for having me, Ellen.

Ellen Bernstein-Ellis  01:24

Absolutely, I was glad to introduce you. You've done so much and have worn so many different hats, Kathryn, and I'm excited to get to have a discussion with you today. So again, welcome.

Kathryn Shelley  02:20

Thank you.

Ellen Bernstein-Ellis 02:21

We like to start off the episodes with a fun question. Can you share an Aphasia Access favorite resource?

Kathryn Shelley  02:33

Well, it's a hard pick, there are so many. But let me tell you about the one that I'm involved in right now - top of mind. It's an online certificate and badge course, E-badge course, called Person Centered care, Life Participation Approach to Aphasia series.

Aphasia Access just launched the first in that series called The Life Participation, Knowledge Course. It's so much more than a webinar. It's contemporary, and it’s how you interact with each of eight modules. You earn .25 CEUs, and at the end you receive a clickable E badge which takes anybody, an employer, your peers, if you have that in your email signature, to a site that shows everything that you did to earn that badge. It's so contemporary and so comprehensive, and it will give someone a foundational understanding of the Life Participation Approach. I'm loving working with Melinda Corwin and Nina Simmons-Mackie, and just the entire team of subject matter experts. The reviews are coming in from both professors teaching the next generation and current speech pathologists that it is really fantastic and very, very helpful.

Ellen Bernstein-Ellis 04:06

We can also point our listeners to Episode 92 to learn more about this course, because we actually interviewed Melinda and Brooke Hallowell. So that's another place they can go to learn more.  Can you explain to the listeners how they can access the course?

Kathryn Shelley  04:27

On AphasiaAccess.org, you'll see the link on the homepage that will take you over to our new Academy, which is the platform where all of our interactive courses are. It's an easy sign up to be on that platform, and then you'll see the course right there.

Ellen Bernstein-Ellis  04:48

That's great. Thank you. I don't blame you for picking that today for a favorite. To celebrate this 100th episode, I was wondering, Kathryn, if I could ask you to share with our listeners the backstory to the start of this podcast. Just a little insider history.

Kathryn Shelley  05:07

Sure. Let's see. It was Nina Simmons-Mackie and I in a daydreaming conversation wondering how to reach busy professionals with a free product to connect them to the wealth of practical tips and information that is available through all the people that make up Aphasia Access. It was Nina who said, “How about a podcast, people wouldn't have to carve out work time, they can listen in a car, or on a  walk, anytime.” And then we brainstormed who might entertain heading up this new endeavor and be the type of person others would say yes to. So Ellen, I was simply the one fortunate enough to pitch the idea to you. So it's really you and the amazing podcast team that made it happen and keep it going.

Ellen Bernstein-Ellis  06:01

Thank you. Those are very, very kind words, and very appreciated. I just have to give a shout out to my colleagues who have been part of this collaborative team along the way, the whole 100 episodes. Nidhi Mahendra, Katie Strong, Jerry Hoepner, Janet Patterson, and Alyssa Rome. They've all contributed to this podcast so much and they are a joy to work with. And of course, I have to thank Todd Von Deak, Jess Campbell and Lisa McCracken, of Aphasia Access, who make sure we have all the logistical support in place. And one more thank you, and that's to the 100 plus guests. Just thank you for sharing your stories and your incredible work with our listeners. You know, maybe one more thank you, and that's to the listeners, because we just so appreciate the support. Thank you for sharing the podcast with your colleagues and your students. We are excited to see it grow.

Kathryn Shelley  06:53

You told me that there's over 102,000 downloads that have been verified. So how cool is that?

Ellen Bernstein-Ellis 07:02

We've been amazed to see that it's being listened to in over 50 countries. We've just been really excited and honored to be part of this. So thank you. And again, I'm glad you're here today.

We didn't get a chance to describe your Aphasia Center very much when you were interviewed for episode one. You did share the why though, how your dad's own experience with aphasia was an important part of the story for starting the Aphasia Center at West Texas in Midland. You are a co-founder of that center and it's celebrating its 20th anniversary. That's a really special milestone. Maybe you could share a little bit about what your center looks like today.

Kathryn Shelley  07:45

Sure, we're in a standalone building. We have multiple groups three days a week. Conversation groups are the backbone. Additionally, we have raised bed gardening, cooking, computer lab, and woodworking. All the groups are ever changing through the years according to the interests of our members. We've had book clubs, singing, photography, art,. Until COVID, we had a very active out and about program, which got people out of the center going to field trips to local museums, nature preserve, restaurants. We're all so glad it's starting to ramp back up.

Ellen Bernstein-Ellis  08:25

Sounds like amazing programming. I just have to acknowledge the 20th. It's a special milestone and really something to celebrate and an opportunity to reflect.

Kathryn Shelley  08:35

Yes, it definitely is. And I'm really humbled and proud that 20 years later, that the spirit of the place, the spirit of the Aphasia Center looks and feels really as vibrant as it did during our startup years. I think that vibrancy remains so contagious, because we continue to serve our mission, which is to walk alongside aphasia survivors, who thought their life was basically over, then watch that depression evolve into hope and a pathway to embrace life again. So it really continues to be those real life stories that keep our staff, our volunteers and our investors so energized.

I think in terms of today's financial sustainability topic, at 20 years, that looks different than in the very beginning, because we have investors that have now been with us for decades. They've guided us through the stock market crash of 2008. And then when we outgrew our early meeting spaces, to launch a capital campaign and buy a building. There are people who have stepped up through COVID. So we've really grown into our mature stage of development and our reputation certainly helps us attract and sustain these long term relationships.

Ellen Bernstein-Ellis 10:05

Kathryn, your center works really hard at cultivating grant support and building a donor base. But I really want to share with the listeners some of the stellar annual events that are associated with your center. I certainly have been watching this infamous Chocolate Decadence event that you host prior to Valentine's Day each year. I'm really just in awe of your center's ability to create these events. Could you share some tips on how you build a successful team to take on something like this and how the members of your center are involved?

Kathryn Shelley  10:43

Sure. The first thing I would say is do not attempt this in year one. Events, special events, just take so much staff time and volunteer effort to put on. Chocolate Decadence started in our fourth year, when I would say we were entering our adolescent stage of development. Our donor base and our database was growing. We'd populated our board by then with people in media and marketing plus leaders in business and health care. Word was getting out in more and more spheres about us. Invitations to speak were on the wise, and that's when a generous woman with a long history of philanthropy and volunteer service presented her idea to our board. She came to us and to our board and said that she had just attended a chocolate themed fundraiser in another state, and that she thought it would do well in our region. And then, of course, everybody was over the moon at that idea.

And she said, if you're interested, I’ll chair the first year. She brought her own volunteers in the beginning, then it evolved from there with friends of friends, and it kept going. So at this point, Chocolate Decadence continues to be an elegant night, and it raises around 40% of our general operating funds. It is the gift that keeps on giving. Members do attend the event too. What's more life participation than that? One of the really dear things is that a family of one of our very loved founding board members who passed away knew what the center meant to their mother. That family underwrites the cost of the member tables as a way to honor their mother.

Ellen Bernstein-Ellis  12:42

That is fabulous. What a great way to bring the community together and have the stakeholders be part of a really important night. So that's great. And it sounds to me like you're saying these events just take quite a team, like you need a cadre of volunteers.

Kathryn Shelley  12:58

That's exactly right. We certainly have a large number of terrific volunteers who show up that night to help. One thing that I've seen really talked about in the volunteer world is that trends have changed over the last 20 years. And, of course, more after COVID. So there used to be a generation of community volunteers who made volunteering their job. And they served on lengthy committee tasks. They really took care of so many things about Chocolate Decadence. We've not seen a new generation that has that level of flexibility today. So I have to say Chocolate Decadence has streamlined by switching to a more full service venue and contracting out a lot of what volunteers handled before.

Ellen Bernstein-Ellis 13:53

Yeah, I think I've noticed that too. And some of the other organizations that I've been involved with have noted this kind of change in trends of how you have to utilize volunteers.

Kathryn Shelley 14:02

That's true. That's very true.

Ellen Bernstein-Ellis  14:05

Well, I know that Chocolate Decadence is just an amazing event. It has chocolate, so you're off to the races with that.  But you also do a concert, could you share a little bit about what that looks like? So I think that's a summer gathering. Is that right? 

Kathryn Shelley  14:21

That's  right. And the Aphasia awareness concert is a different goal. Its main goal is awareness. So yes, it's an outdoor event with a fun tribute band. General Admission is free. So this year, you'll feel like you're witnessing Elton John in his early years.

Ellen Bernstein-Ellis  14:40

Oh, now that's great.

Kathryn Shelley  14:43

Yeah, so during the concert, we raise awareness about aphasia, how it impacts people, and that there's an Aphasia  Center to help. The cost of the band is entirely underwritten by sponsors. And then because it's a free event, our television newspaper, and radio stations, trade or greatly reduce the cost of airtime for all the advertising. So it's a win-win as the media and a number of businesses want to have their names on the stage banners seen by that audience that night. It's usually a couple thousand people. Both of these events are just great ways for Aphasia Center members and families to get out of the house and participate. The fundraiser of Chocolate Decadence and the awareness raiser of the Concert are our two yearly events.

Ellen Bernstein-Ellis  15:37

Both of them build community in their own way.. That's fabulous.

Today I've been thinking about how we're going to talk about this. And whether you are a community based center, a university, or even a hospital program, sustainability has several pillars, and I am so glad that you kindly agreed today to address one of those pillars, specifically financial sustainability.

I'm particularly grateful for this chance to learn from your expertise, Kathryn, because most SLP training programs rarely offer instruction on program development and management. Yet, we are frequently motivated to launch programs to meet the needs of the community we serve, and we often learn as we go. But this lack of knowledge might be a barrier to someone wanting to start a program. You mentioned during our planning meeting that there's a fundraising framework that involves understanding the organizational development stages, and you've already started to sprinkle our conversation with those words. Could you explain those stages to the listeners?

Kathryn Shelley  16:44

Sure. So the typical stages, particularly in nonprofits, and I think they overlap to other settings, are often called infancy, or startup, adolescence and maturity. Most every organization or a program begins with a compelling story by someone who is smack in the middle of that story. So if we think about Jodi Morgan, who is a huge hearted speech pathologist in Jacksonville, Florida, she went to a crowdsourcing campaign populated with video clips of people with aphasia, answering what an aphasia center would mean to them, when they didn't have one to go to. Then, that led to starting the Brooks Aphasia Center. And of course, my own story is as a panicked daughter, who only saw a dismal life ahead for my father, and frankly, an overwhelming life for me. So the first thing I did was call around to get advice on who was one of our region's most respected SLPs. Over and over, I was given the name Beth Crawford. And so it was Beth and I on the original staff, and Beth remains the program director today.

Ellen Bernstein-Ellis  18:00

That's fabulous to have that type of continuity and partnership.

Kathryn Shelley  18:04

Absolutely. And then at the very beginning, the other person that's from that original staff, is Shun Kelly. She came on board as a CNA in our earliest days. All three of us are still there, 20 years later. But the startup stage of a new program is so often started by the people who are deeply affected. And, you know, there's a strong sense of ownership and often entrepreneurial staff emerges from the founders. So your nonprofit board of directors in those early stages is often more of a programming board, consumed with all the details of delivering service and creating those services. 

Ellen Bernstein-Ellis 18:49

Okay, so that's what the startup looks like, or the infancy stage. Let's move on to adolescence.

Kathryn Shelley 18:56

It can be a little rocky, like the usual stage. When you move further into the adolescent stage, the conversations, of course, have evolved to how to ensure the well-being and the longevity of the organization. For a nonprofit, that's the stage where recruitment needs to happen to transition from the founding programming board to a governing managing board. This is where I've seen organizations falter and get stuck at this stage if their leadership team remains homogeneous. Even more so if staff isn't equipped or unable to dedicate the time needed for financial well-being. This is where expanding to experts in fund development, social and broadcast media, and corporate and healthcare leaders can really open new spheres of expertise and influence.

Then of course, I'm thinking about if you are housed within a university setting, fundraising people are typically already in place within the Office of Advancement. Of course, that's where you're going to really keep that relationship, hopefully, top of mind. You are supplying good stories of the impact that you're making, so that the advancement office team is able to communicate those stories as they're doing fundraising for the university and your program.

Ellen Bernstein-Ellis  20:41

How about moving on to the mature stage? Tell me a little bit about that.

Kathryn Shelley  20:49

So yes, so the mature stage is where the governing managing board transitions to a true governing fundraising board. If you've already brought in a variety of skill sets in the previous stage, then it's more board members with high influence that are really more easily recruited. It's important to also keep the advancement officer with those news stories, and to keep your board just inspired with the stories of what you do.

Ellen Bernstein-Ellis 21:26

If you happen to be an SLP, who is new to these types of concepts, is there a resource you can recommend to learn more?

Kathryn Shelley 21:37

Absolutely, there's so many. I have to say that, at heart, I'm an introvert. Just the thought of asking for money makes my palms sweat, and it just feels rude.

 

Ellen Bernstein-Ellis 21:51

Okay, I have sweaty palms too.

Kathryn Shelley  21:55

But here's the thing. There are so many learning opportunities out there. I've taken advantage of so many that have been provided in our region, and that I could find online. Now, of course, Aphasia Access is full of people who have started small to large programs within all types of settings.

Ellen Bernstein-Ellis  22:17

That's a great point. And that's part of the strength of that community. For sure.

Kathryn Shelley  22:21

Absolutely. And I can tell you that even at the Aphasia Access Leadership Summit, this March, there's a roundtable session called “Show Me the Money”. There's a community of people, speech pathologists, you know, all waiting for you.

Then, also, Aphasia Access is launching a new mentoring program, and it's a great place to get one on one advice about all kinds of topics. That's within Aphasia Access.

Then I would suggest searching the internet to see if there's a Nonprofit Management Center near you, because they're scattered across the country. They are a treasure trove of local resources. Importantly, they typically have a foundation search directory available to search funders by state ,region or interest area. They're a great local resource. Lastly, I'd recommend two things, the National Council of Nonprofits, and BoardSource, both premier organizations with lots of resources.

Ellen Bernstein-Ellis 23:29

That's great. You mentioned local resources and I'm sure some of these have great online resources to support and get you the knowledge you need to start this process to successfully implement these new programs, whether they're small or large scale.

In terms of capacity building, when we had our planning meeting, you mentioned something that really resonated with me and I want you to bring that back up. It's about expectations and time. I was wondering if you would share that with the listeners?

Kathryn Shelley  24:07

I've had such good fortune to come to know speech pathologists, just top of the line people wanting to change the world. I know how hard you all work and you all are in the life transformation business, helping people with complicated lives. It seems to me unrealistic to expect the same people running programs to also carry the major weight of fundraising, because what I know is that grant applications and a diversified fundraising strategy are a specialized skill set that can certainly be a full time job. Lots of foundations offer what they call capacity building grants. I would suggest prioritizing the cost of a skill development person, on contract or on staff as early as possible, that will really free you up to tend to the people and create the programs that you're trying to create.

Ellen Bernstein-Ellis  25:13

I think you're speaking to the “it takes a village” model. 

Kathryn Shelley  25:19

So, absolutely and there's only so many,many hours in the day, right?

Ellen Bernstein-Ellis 25:23

Well, let's then talk and offer our listeners some tips for implementing financial sustainability best practices, because I know that's really important to you. Where would you like to start? Share a best practice and then a tip to go with it.

Kathryn Shelley  25:38

Okay, so always, the first best practice, in my mind, is capturing the human story. And the tip I would offer, especially in the age we live in, is to make sure you're sharing the real plight of people with aphasia in their own words, because it helps others understand the impact of your dream, instead of just feeling like you're there begging for dollars.

So take out your cell phone, ask people with aphasia and their loved ones, what it was like before you came along, how their life has changed, or would change if they had-- fill in the blank-- the aphasia friendly book club or an aphasia camp or the program at that university. Video now is so low cost it's really a level playing field for anyone wanting to launch a dream. So take those videos and then strategize where best to share those stories.

Ellen Bernstein-Ellis 26:37

Well, that's a real doable tip, I think. And I want to recommend to our listeners, just visit the Aphasia Center of West Texas website, where you feature some compelling member stories. And do you have any lessons or tips about how you selected those stories?

Kathryn Shelley 26:55

Not so much about how we selected them. I remember one time, we literally just set up the studio, we did hire a professional videographer, but we just hired him for two and a half hours. And then we asked anybody that wanted to come in to just have a seat. And we asked them about life before us and what difference we make. What spontaneously came out, in gestures, we of course, had some aphasia friendly tools sitting there if they needed those, but it's so powerful, what people will communicate if just given the chance?

Ellen Bernstein-Ellis  27:39

Well, I think the first time I went to your website is because Audrey Holland said that everybody should listen or watch Ann’s story. I think that's still up on your website. Is that right?

Kathryn Shelley

It is.

Ellen Bernstein-Ellis

So Ann’s story. Kathryn, would you like to share another best practice?

Kathryn Shelley 27:57

The second one I always think of is to utilize your regional resources. A tip is to find the Community Foundation closest to you. There are, I know, over 700 scattered across the United States. And my understanding is that something similar exists in a lot of countries.

So in our country, a Community Foundation is a public charity that typically focuses on supporting a geographical area. They support local nonprofits and educational institutions. If you're a university, it would be through the Office of Advancement because that usually is a 501 C3 arm of a college or university. Whether you're going with someone or setting up the appointment yourself, the main point is that the Grants Officer at a Community Foundation wants to talk to you, they really do. This is their mandate, to fund new endeavors and sustain good causes in the community. So they have donor advised funds, endowments, scholarships, field of interest funds, giving circles and more. And they're all about making good things happen, especially for marginalized populations, like people with aphasia,

Ellen Bernstein-Ellis  29:18

Right, that's great to have something tangible like that, that we can find in all of our communities. Do you have a third best practice you can share?

Kathryn Shelley 29:27

Sure, the third best practice I think, is to create a strategy to continually expand relationships and the possibility of donors. It's really about beginning relationships, not knowing where they might lead. So for the Aphasia Center of West Texas, we host what we call “Talking and Tour” three to four times a year. We have chosen after people get off work before they go home, as a happy hour type event. They know from the flier that we will not be asking for money. We do show people a video featuring a variety of our members with aphasia sharing the impact of our services. It's around eight minutes long. And then our executive director Kitty Binek, shares about our events, a bit about our program, our board of volunteers.

We make sure that we invite key people in town, such as realtors, ministers and rabbis, financial planners, and business people. Our board is responsible for bringing guests as well. It's really a place to cultivate a beginning relationship and an awareness of aphasia and what we do. We've certainly gained volunteers and donors in the process, but regardless, we find people are really inspired when they leave. 

Ellen Bernstein-Ellis  30:55

I think you're pointing out the importance, that's in the literature on financial sustainability and healthcare innovation, of identifying your champions. That is an element that seems to be mentioned in numerous articles. You have to find the person who's motivated to support your program, whether you are at a university or community nonprofit. I remember an early episode with Janet Whiteside, Episode 17. She spoke about how the dean of her university asked her to share her dream. He wanted to know what it would be and then when he heard it was about building this Aphasia House, he was committed to raising the funds that would open the doors to this dream. That was just so inspirational, that type of partnership and championship. Any tips around identifying your champions?

Kathryn Shelley 31:50

Sure, if I go back to the beginning, like Janet Whiteside and Jodie Morgan, all of us listened to our heart’s desire to make a difference. And then we started talking to others. For me, there were a couple of community people that listened to me talk. And I was just talking everywhere I could think. What happens when you start talking, is that the power of good in the universe does open doors. In addition, you find the dreamers who came before you. So Aphasia Access, and the Aphasia Institute are great places to find community. But if you start talking in your own community, it really is contagious. I do think that the world does start opening up to you,

Ellen Bernstein-Ellis 32:47

That's really inspirational advice. It just really goes to the heart. And I really appreciate this conversation today, because fundraising and finances can be very scary and today, you've made it feel so much more doable--lead by what's in the heart, and I really appreciate that. So thank you. Is there anything else you haven't had a chance to cover that you just wanted to share with the listeners?

Kathryn Shelley 33:15

The one thing that I haven't mentioned that I have used in fundraising, and in populating a request for media or anything like that is I've been using the Aphasia Access State of Aphasia Report. I really am not trying to continually go back, but it is unlike anything I've ever seen. Instead of finding statistics, and all kinds of things in all kinds of places, all those stories and statistics, so much of what we all need to populate grant proposals and give them media sound bites is all in there. It's so worth it.

Ellen Bernstein-Ellis  34:00

I personally have also had an amazing experience with that as a resource for multiple tasks. And I just want to let our listeners know that recently in December, I think it was episode 96, we actually featured Nina Simmons-Mackie and Jamie Azios, telling us about how they're updating the report and what it's going to look like next. That is absolutely exciting. I am so grateful that that will soon be in our hands as well. So thank you for bringing that up.

It's time to wrap up this episode. But I must ask you one more thing, Kathryn, and this is a fun one for me. If you had to pick only one thing we need to achieve urgently, as a community of providers and professionals, what would that one thing be for you?

Kathryn Shelley  34:50

I think that's easy. For me, I say this with the greatest respect, but I do think it's diversification. It really is. Is my observation over these 20 years that if the condition of aphasia is going to become a household word, and if services are really going to reach the people who need them, then we must take our passionate storytelling selves and invite experts in marketing and fundraising, broader healthcare and community leaders who have the expertise and can help open more doors to other communities of influence.

Ellen Bernstein-Ellis  35:29

That sounds really important, easier, maybe easier said than done, but absolutely essential. So thank you. Thank you for being part of the podcast today, number one and number 100, Kathryn. 

Kathryn Shelley  35:42

Thank you so much.

Ellen Bernstein-Ellis 35:42

Our pleasure. I'm gonna thank our listeners as well. And for references and resources mentioned in today's show, please see our show notes and they're available on our website, www.aphasiaaccess.org. And there you can become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy that Kathryn described at the start of the show. And if you have an idea for a future podcast episode, email us at info at aphasiaaccess.org For Aphasia Access Conversations, I am Ellen Bernstein-Ellis, and just thank you again for your ongoing support of Aphasia Access

References and Resources

Aphasia Center of West Texas, https://aphasiawtx.org/

• Aphasia Anecdotes including Ann’s story (from website)

https://aphasiawtx.org/about-us/

Brooks Rehabilitation Aphasia Center: https://brooksrehab.org/services/aphasia-center/

Aphasia House, University of South Florida: https://healthprofessions.ucf.edu/cdclinic/aphasia/

State of Aphasia Report, Aphasia Access: https://www.aphasiaaccess.org/reports/

Board Source, https://boardsource.org

Nonprofit Management Center, https://www.nmc-pb.org/resources

National Council of Nonprofits, https://www.councilofnonprofits.org/

Nonprofit Life Cycle, https://speakmanconsulting.com/resources/nonprofit-lifecycle-matrix.pdf