MENGENAI EPISOD INI
Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire. I am privileged to introduce today's guest, Dr. Sarah Northcott. We are fortunate to have a conversation about her work and the application of solutions focused brief therapy and psychological supports to individuals with aphasia.
Dr. Sarah Northcott is a Senior Lecturer in Speech and Language Therapy at both the University of East Anglia, UK, and City, University of London, UK. Her research interests lie in exploring ways to support the emotional and social wellbeing of people living with stroke and aphasia. In 2016 she received the UK Stroke Association Jack and Averil (Mansfield) Bradley Fellowship Award for Stroke Research, which enabled her to lead the SOFIA Trial (Solution Focused brief therapy In post-stroke Aphasia), a feasibility wait-list controlled trial. She also led the qualitative evaluation on the SUPERB Trial, investigating peer befriending for people with aphasia, also funded by the UK Stroke Association.
Take aways:
- Social networks are wonderful for people with aphasia after their stroke, and these social networks often predict outcomes more than the severity of the stroke. (9:30)
- It is crucial that speech language therapists receive training on this topic so they feel comfortable stepping into those moments when there is a need for psychosocial support, or at least recognize when they need extra support in doing so.
- Solution focused brief therapy is designed to help people build change.
- With training, it is important that speech therapists transition out of the "fixer mindset" and the thought that they need to fix everything, in order to successfully provide this psychosocial support.
- Paper and pen, or objects from the individual's environment that they are comfortable using, are the most effective visual communication methods when going into these unpredictable conversations.
- Always make the most of people's strengths and talents and focus on what is already going well.
- The client is the expert in their own life!
Jerry: Greetings from across the pond, Sarah. I'd say good morning, but perhaps good afternoon for you. Really nice talk with you today.
Sarah: It's lovely, thank you very much to be inviting me as part of your podcast series. That was really lovely to be here.
Jerry: Absolutely, our privilege. I'm really excited to dive into this important conversation again, a topic near and dear to my heart as well. And before we get started, can you share just a little bit about your mentors and collaborators and kind of how you found your path, so to speak.
Sarah: So, I first trained as a speech therapist about 20 years ago now, and it was when I was starting to work with adults who had a stroke for the first time, I guess, I started to realize how difficult it was to, how your life can be turned upside down by having the aphasia and how isolated some of the people I was working with were as well. And it was around that time that Katerina Hilari from City University contacted me and asked me if I'd like to do an MSC looking at social support for people with chronic aphasia. And that kind of tied in well with what I was noticing in my clinical work. And I think I was really struck by that project, I found it really exciting to be working on that project. And it also felt important because I could sort of see the clinical relevance from the work I was doing. I guess I'm very grateful to Katerina, because she sort of opened that whole door for me. And it was really Katerina, who encouraged me to do the PhD. the PhD was looking, taking that work forward, looking more generally at social support after a stroke. So, for people with and without aphasia, and what social support really mattered to them, what value it had, what tends to happen to their friendships. And yeah, I feel very lucky that she was had a lot of belief in me and really encouraged me to do that. And after my PhD, she was still there for me. So, I have quite a difficult season, because when you finish your PhD to know quite what to do next. And yeah, she's always been incredibly supportive and has been really there for me sort of had a belief that the work we were doing was important and valuable, and that I had something to contribute. So that was, yes, she's like, I really respect her academic judgments. And she's been a really big part of my life, I guess, the 15 years that we've done some lovely work together. And that's been really rewarding. And I guess more recently with the SOFIA fellowship project I've had, as well as Katerina, three other supervisors, so a mental health nurse, and two psychologists and I think, I there was real value for me and being supervised by people who weren't speech therapists. So, I really learned from those with different perspectives and what they were bringing to it. So, one of them Shirley Thomas, who sort of is leading the column base trial campaign for activation therapy for people with aphasia. So of course, she brought a huge wealth of knowledge about running trials with people with aphasia, which is not the easiest thing to do, assessing him for his knowledge about mental health nursing. And I found that really helpful to get those perspectives and put that into the research. And so, many lovely people to work with. I don't think I've ever felt alone with it. And if anyone out there is a speech therapist or speech therapy student and wondering about research, I would say, it's really important to have a team around you because it's not always the easiest thing. There are not backs when you get rejections and then things don't go to plan. So, have people around you who believe in you, and will support you through that and support you not just for the academic side, but sort of quite holistically as well. So, I think I've been, I've been very lucky with the support I've had around. And I've certainly I've not done any of this work alone, it's always been a very much a team thing. And I'm very grateful for the team I've had around me. So, if anyone of my supervisors have happened to listen to this, a big thank you to all of them.
Jerry: That's really well said in terms of the importance of just having that team that work around you, for sure. And really a powerful story about Katerina reaching out to you, that must have just been really a great moment and ongoing moments to encourage you with your PhD and beyond. So, I agree some definitely lovely work that two of you and others have done together regarding psychosocial effects following aphasia. So, I just love that whole body of work.
Sarah: Yeah, and I feel very grateful to the school that everyone has given me with that. And I would say that again, I guess that's another thing to pull out of that if someone's thinking about whether to go into research, it is so important to do research in an area that you're quite passionate about, and you really believe in because it's tough doing research. So, I think you have to have a real motivation. And I think that's kind of going as well as that as a support team to have a kind of belief in the projects.
Jerry: Absolutely. And it's really evident in the work that you do and the connections that you have to real individuals with aphasia. So, it definitely shows through, and again, those interdisciplinary connections you mentioned, Shirley Thomas, and she's done so much work in this area. And that's been powerful.
Sarah: You know and I think I think it's been really interesting to work with a psychologist coming from a different background and a different perspective on research. And I've definitely learned loads from them, it's been really helpful.
Jerry: But an excellent place to start. Just to kind of roll back the clocks a little bit, I think many of our listeners are familiar with your work on the stroke social network scale, and the social networks and supports for people with chronic aphasia that you've done with Katerina Hilari. So, I think that is a really nice place to start in terms of just thinking of where you've come from. In the 2018 article in the International Journal of Language and Communication Disorders, you identified several barriers to accessing appropriate psychological support for individuals with aphasia. And likewise, in your 2017 article, in that same journal, you found that most speech language pathologists or in the UK, speech language therapists, lack the confidence to implement the appropriate psychological supports for people with aphasia. Of course, that's really been shown by --- and colleagues all around the world, but it's just such a prominent issue. Can you talk a little bit about how all of this kind of led into your current research regarding solution focus brief therapy?
Sarah: Of course, and thank you for reading these papers.
Jerry: Absolutely.
Sarah: So yeah, do you want me to take it back from the beginning for the sort of social support stroke social network scale and then work from there?
Jerry: Sure, that'd be fine. That'd be great.
Sarah: Yes, in my PhD I was looking at social support, and one of the outputs of that was the stroke social network scale. And it is something that Katerina's done recently is set up a repository of different resources from City University, so just if people are interested in some of the work we've done at City to go to the current website. And you'll find it there, you'll find that scale there, you'll find her cycle 39 scale, and we're trying to build up that repository. So, that's just a nice resource for anyone in the world to tap into. And I think, yes, in my PhD reverb, we're looking at what happens over time. And it was one of the themes that came through was that social networks are quite wonderful after a stroke. And they seem to be particularly vulnerable for people with aphasia. And that seems to be a really predictive factor of who's going to maintain a strong social network, a stronger factor, even then stroke severity or disabilities. So, that was a quite striking finding. And I think I felt very privileged in my PhD because part of it was doing questionnaires of people over time, but then also doing qualitative interviews of people around about a year post stroke, so I had a year of my life walking around London doing these interviews of people and listening to people's stories. People are very generous with their times to share how they found the stroke, what was important to them? And yeah, and exploring with them all the value of connection and what that meant to them after the stroke. And also, we could see from the quantitative data that people were losing friends. We didn't mean, there was a chance to explore with people what's happening, what does this mean to you? And it was, you know, so many reasons that people gave of why they were seeing their friends less, you know, they weren't going to same activities that they used to. So, they didn't see those friends in those contexts anymore. They were exhausted, and they didn't have the energy to initiate contact. With a disability, they were housebound, and how you host and your lack of reciprocity there. And of course, the phase, you're in a phase of disrupting the dynamics of friendships, and a big theme that came through as well, there was the close link between this sense of feeling a little bit withdrawn and cutting us off a little bit. So, the link between mood and friendship loss, and it's like a vicious cycle, I guess, of becoming withdrawn, not going out, and then getting low in mood and then becoming even more withdrawn. And I think some of those stories affected me quite a lot. And at the end of my PhD, I was wanting to say, well, what intervention could we have that could break that vicious cycle and make it more of a virtuous cycle? To encourage people to, or what do people need to be able to feel they can start to reengage again and start to live the life they want to live with the stroke and aphasia? So, I think that was the motivation for me at the end of the PhD to think it's quite a big thing to go from observation research into intervention research. I don't think I've quite realized actually how big a thing it was and how much I was undertaking it as a way of learning. But I think that was my motivation to start thinking about interventions. And so, this was five years ago. And at that point, there was very little in terms of the research evidence base for effective psychological therapy for people with aphasia. And Shirley's lovely studies, comm study, I wasn't the basis to her lovely systematic review quite recently. And yes, its basis is still pretty thin and has some really nice research coming through. So, there's all the lovely stuff in Australia and in the world, but it's still, I would say, I was surprised how many psychological stroke research studies were excluding people with aphasia on the grounds of their language disability. So that was quite motivating for me to think, as a speech language therapist, what can be our role? What therapies might work well, so that was nice to start playing. And then as you say, before I went into doing the solution focused brief therapy trial, I did some work, listening to speech therapists. So, we did an online survey, and then we did some focus group analysis and had an experience trusting the psychological well-being of people with aphasia. And, yeah, that was, so it was really striking that speech therapists, they really want to do their best. And they were doing some lovely listening, and they're setting up groups, and they were telling us all the things that they were doing. But there was a sense of, actually, this is not an area where you feel confident. And this is not an area that we feel particularly more trained or supported in. And we have this sort of unease that if we spend a session listening to someone's distress, should we spend that session, doing language goals, you know, was that the right use of our time. And that particularly felt uneasy when they felt that it was all on their shoulders. And if they got out of that debt, they had nowhere to turn to for extra support, when they felt that the management and their team have to be valuing that work, supporting them in that work, where they didn't feel they had the training. They were time pressured, and conversely, in teams where they felt that there was that sense of holistic team culture, and it was valid, it was easier if they had some training. And particularly they had such a support. So, I think what might work particularly nicely was whether there was a mental health professional psychologist within the team, with a kind of opened door policy who they felt they could knock on the door of and ask them for advice as they went along. And if they started to go down to their desk, they could do joint work together or handover. And where they felt they could get informed advice and support with it. That seems quite enabling to speech therapists to feel that this is something that they could address and feel comfortable addressing.
Jerry: Wow, that's terrific. I want to go back to just a couple of things that you said. That idea that social networks predict outcomes more than stroke severity, and then that cycle between changes in mood and withdrawal and how that kind of feeds itself. And I think that last point, when you were talking about Speech Language therapists, that training, right, just not feeling comfortable, but when they get that training, they feel more comfortable and are able to step into those moments when there's a need for that psychosocial support, or at least recognize when they need outside help as well. So.
Sarah: Yes, I think it was quite interesting for people was just saying one of the things that they got from training and experience was, when they complete it, when they were newly qualified, they had the sense that they needed to fix everything, there needed to be solution and quite anxious with situations where they couldn't fix it. And with training they kind of reversed this around to thinking sometimes it's really very good just to be there with someone or just to listen and that's valuable in itself. And they thought they had some skills to sit back on enabling them to do that. So, listening and being there with someone when they're distracted, they felt more comfortable out on their own.
Jerry: Yeah, I agree. And making that shift out of that fixer mindset I think is a really important part of providing that type of support, for sure. Absolutely. So terrific introduction to this. Can you talk a little bit about why speech language therapists should consider the psychosocial impact of living with aphasia and kind of what their roles are in terms of addressing psychological well-being, psychosocial well- being?
Sarah: Sure. So, what came through in the focus group project was the sense that often people with aphasia, that speech therapists are meeting, have sort of been trapped in this world of aphasia, and they got a real value from having a speech therapist facilitate them, explaining what it was like to be them, what it was like to live with the aphasia. And the speech therapists have skills of listening and facilitation, and that's really valuable. So, I would say that for someone with aphasia who has more severe distress, more severe mental health issues, I think speech therapists have a role in facilitating and accessing mental health professionals as well. And what we found in the focus group project was speech therapists we spoke to were concerned that people with more severe aphasia, it was very hard for them to access psychological health and mental health professionals who understandably found it very challenging to adjust their psychological therapies for someone with more severe aphasia. And I think also what we found in the UK, and I don't know if this translates to the US, but in UK near the stroke, so in your acute stage, just post discharge from hospital, psychologists working in those teams more like, sometimes like it was just like in ASD so there was quite spectrum where the speech therapist was very disappointed that those people with aphasia aren't suitable candidates for therapy because of their language disability. But there are also psychologists in this stroke special services who are skilled working with aphasia, we're happy to be joint working with the speech therapists, we're happy to work with the family members around the person with aphasia. But when the people with aphasia went into the mainstream mental health services, then there were more issues around mental health professionals struggling with the aphasia. So, I think in that situation, the speech therapists have a real role in supporting someone with aphasia and accessing those services. So, I can completely see that as a speech therapist listening here thinking like not really wanting to go and get lots of specialist training and delivering pre psychological therapies is not that I see my world what I want to do, but I would say that it is important for speech therapists to not undervalue their own skills of listening and what that can be for someone with aphasia, or underestimate that we can have a sort of bridging role and helping people access psychological services. And another thing I'd add to that is that, you know, really listening to someone who is having a hard time, it's not easy, and I have some sympathy with speech therapists who are starting to learn to project, and starting to feel anxious. And I would say that it's important to feel supported in that work and so there's someone that you can go to, and people talk about peer support a lot and how valuable that was. But to find some way of feeling reassured that you're doing the right thing, sometimes as well, that it is the right thing to sit there with someone who are distressed. I would say, I'm a really big believer on making sure you've got support systems for the therapists as well.
Jerry: Absolutely. Just to touch on a couple of those points. I completely agree that speech language pathologists, speech language therapists, have a real unique skill set that allows us to facilitate, to support that communication and hopefully support expression of, you know, those psychosocial kind of needs and concerns. And I also think that we're really positioned well, to facilitate and support those interactions, as you said, with psychologists, and perhaps, you know, training, collaboration, kind of mutual bidirectional training in terms of giving them the skills to support communication and expression. And certainly vice versa, them kind of sharing their knowledge, those psychosocial and psychological supports as well. So…
Sarah: I think that joint working is a really lovely model and way of thinking about structures, isn't it? I mean, if you haven't got the psychologist to sit next to them, it's much easier. And there were definitely people who spoke about psychologist is in a different team, it's much harder to get a hold of them. And there just work pushes. I mean, not all stroke services in the UK at all have access to a psychologist and some of them are very thinly spread. And speech therapists are very thinly spread as well. So then, yeah, there's logistical difficulties there too.
Jerry: Yeah, absolutely. And we definitely have the same kind of issues in the states as well. In terms of access to those services, just so many means at this point across the entire population, so…
Sarah: Yes, this current situation is particularly extreme as well. Yes.
Jerry: Definitely. Yeah, definitely. Can you talk a little bit about the challenges of making those psychological, psychosocial therapies accessible, when someone has aphasia? Kind of the adaptations and types of communication supports you need to kind of weave in?
Sarah: Yeah, that's a really good question. The psychological therapy is traditionally they're language based on the kind of skills that you will be taught in a counseling training, of open questions and don't always work so well, when someone has aphasia. So, speaking, psychologists have to say, well, you need a little bit more skill, that some of the tools that you have don't work so well. So, I think there's a little bit of thinking there. And, yes, I think it's helpful to talk about my fellowship project. So that's the SOFIA Trial. And that's looking at adapting the solution focused brief therapy, so that it is successful for people with aphasia. With that trial, we had an aphasia advisory groups, and it was a lovely group of people with aphasia to advise us on it, and they were very, they advised us very strongly that we should see if we could make it accessible for people with severe aphasia. And I remember the time being a little anxious about this, but I couldn't really argue them, they had a point and was saying people with severe aphasic probably need psychological support more than anybody else, and so often excluded, even in the face of your trials. So, see what you can do, you're a speech therapist, you've got training in psychological therapies, we'll see what you can do. So, we ran a little pilot with people with very severe aphasia. And it was challenging, it was really challenging. Adapting solution focused brief therapy for people with severe aphasia. So, they had receptive and comprehension difficulties. And at the end of this pilot, we got a big thumbs up, though, they said, "this therapy does work, you shouldn't leave people with severe aphasia." So, we did. So, we did include people with severe disabilities. And in fact, I think it's 43% of our participants at securities union. So, we thought about this a lot, for three years now. I'm very happy to share my thinking with you on how we adapt solution focused brief therapy for people with severe aphasia if you'd like me to keep talking.
Jerry: I would love that. That would be terrific. And before you go on, I just wanted to make a couple of notes. You have a 2016 paper about that trial, excuse me, the pilot of that approach.
Sarah: Yes, I mean, this came as quite a surprise to me as a clinician, all the different stages of intervention. So, we've initially did a very tiny proof of concept study with five people who had mild to moderate aphasia. And I think the aim of that trial was just "does it work at all?" And perhaps a more personal level, "Do I like this therapy approach?" And then the little pilot has talked about the severe things yet that's not been published. That's internal pilot within the SOFIA project. I should really write that up at some point, but that's not been published. So yes, that was current work with people with severe aphasia before we do the trial. So yeah, there's been quite a lot of stages before we went into a feasibility trial. And as something that I'm particularly proud of is that we did include people with severe aphasia. And I can add that one of the things we're looking at is do the other different patterns in results in people with severe aphasia or mild aphasia, and we don't think that there particularly are. We think people with severe aphasia also benefited from the therapy. So we're really pleased. It is a different sort of therapy though I would say. So solution focused brief therapy is as traditionally, really linguistically quite complex. So there's cognitively complex as well, there's a lot of question forms, which are sort of hypothetical, conditional features and the other person's perspective. And if you go on a training course, I think most of the questions will seem like they're not really going to work that well with someone with aphasia. And a lot of the tools seem very based in language and very inaccessible, to be honest. So it was, I think what we did with SOFIA was we stretched back to think what are the core assumptions underpinning this approach? And then can we build up in a way that's more linguistically accessible? So, there was quite a lot of taking out solution focused questions and thinking, how can we make this simpler, and then sort of the other way of building up from assumptions? So that sounds really abstract. So, if I sort of give some examples. So, an assumption might be, a solution focused assumption might be that everybody has strengths and talents and skills, even though they're not yet quite aware of them. There are lots of solution focused tools to help elicit people really start to notice those strengths and skills and talents. And one of the things you might do to start a follow up session is say, you know well what have you been pleased to notice about yourself in the last week, so it starts to help people notice what's going well, what can they be pleased about, and I think what I would quite often do with someone with severe aphasia, as a follow up session I might, is have some way, visual way of representing the time. So, they knew the timeframes or looking at their calendar together. And I'll just say, "What are you proud of?" And we'd write down proud, maybe the gesture, and then we would just list five things they were proud of. And that was conceptually, quite straightforward. And then it was easy in speech therapy skills to facilitate them coming back with them, what they've been proud of. So, and it might take a whole, it was super exciting that, you know, if someone was linguistic, didn't have aphasia, that kind of little bit of conversation might take three minutes, five minutes, but for someone with aphasia, it might take an entire session to think of well what are five things that they've been proud of since I last saw you? And I remember one gentleman, he had very severe aphasia, not very much language at all. And he, he went off and he came back with this little wooden stool that he bought. And he, through gesture, he explained that he used this tool to help with his, and he was gardening with his tomato plants on his tiny little balcony. And it was explained with no language that it was just right, because he stopped getting backache, he didn't have to bend over. And then he explained through gesturing and looking at the stool that it was it was a peaceful story. I mean, it was it was a tiny stool. And he explained that he bought it from the local market. And he explained with his purse that he bartered it down, and it was actually only cost him 10 pounds, which is not very much money. And it was functional, it was light, it was the perfect height to stop getting backaches when he gardened his tomato plants. And it was beautiful. It was a really beautiful item. And if you got anyone else to just come down to the local pawn shop, and bought a little plastic stool, he had the kind of, it was just this lovely story that he did something about him that he'd been able to share with me, this little tiny incident in his life of buying this stool that he'd done over the last week, his gardening. And I think it was giving him that space to expand on these little details of his life that he felt proud of, and it was making a space. So, there wasn't very much language involved in that conversation at all. He didn't, there wasn't very much language in terms of my questions, there wasn't very much language in terms of how he answered them. And it probably took him, I don't know, 15 minutes to explain to me about this stool and what it meant to him. Maybe he didn't have very many chances, the rest of his life to expand on those little details of who he was and why this was important to him. So, sometimes I used to think, gosh, it's quite a watered down version of solution focused brief therapy, I'm doing, but there's some quite sophisticated questions and tools that I'm not able to use. And we would tear it back down to sort of this quite essential things. But somehow, it seemed to be quite empowering to have people feel that someone had noticed them, and that these conversations help people feel that someone had noticed what was special about them. And that helped them perhaps notice for themselves what was special about them. Sorry, that was a quite long winded answer.
Jerry: No, absolutely. I just think that's a fabulous illustration of, you know, the support that speech language therapists can provide in that context to facilitate all of that communication. So, you said this is a guy with very little verbal communication. And yet, that's a really complex story that you were able to elicit and really speaks to why, you know, we're well positioned, so to speak, to provide these kinds of supports as well, I just want to make a couple of notes. Referring back to that 2016 pilot, you have some examples of the language that typical solutions, focused therapy would use, you know, the best analogy I could give was, you know, some of those questions are a paragraph long, so to speak, and you've kind of pared that down to a single, you know, less syntactically complex sentence that allows those types of responses and that certainly all of the communication supports to get there in terms of expression.
Sarah: Yes, so at City University, there's a clinical linguist called Lucy Dipper. I do remember having a lovely session with her. And I said, look, I've got these questions, they don't work at all, and then that was quite nice to tap into kind of a linguist's attitude and she was sort of talking through how we could simplify. So that was, and that's kind of what I like about research, sometimes there's all these different angles. So, there's the kind of interpersonal sort of meeting with participants, but then there's the kind of more intellectual thing of how do we simplify this language when you first meet someone. And you might typically say in the first session, you know, this is really quite posing, I'm with your best friend, what would they say, which would tell you that these sessions have been a useful concept they see and know these questions go on, as you say, for a very long time. And we went through question by question thinking how to make them a bit simpler. So, in that case, the very first session, very sort of an opening out trying to explore what's into someone, what do they want to focus on in the sessions? I might write down, you know, we're having six sessions and write down six, six visits. Say, what, what are you hoping for? And then write down hopes as a gesture. And that's a much simpler way of asking someone than some of the typical solution focused. And then what we did when if that was, that's still a very open question, and quite hard for someone with very severe aphasia to answer so, we then we borrowed, like, highlights from everything we could find. So, we borrowed from talking maps. So, I don't know how much talking maps are used in the US, but this is where you, okay? So, he literally goes like here's a doormat, and you have all these cuts. So, we took the doormat idea, and we borrowed from all the research across the world about what it means to live well with aphasia, we got about 12 constructs, things like family, friends, competence, going out. And we thought we would do a scaling that was the sort of not to 10 at the top. Then we would ask people to place these different constructs on the scaling map so how they felt things were going and mostly people even with very severe aphasia were able to do this relatively okay. And then we were to say, what's important to move up from that? And that was relatively, it was very visual, you know, it was literally taking a card and saying, well, the card that I really want to move is this card. I want this card to move up. And it was a surprise, sometimes you'd expect to be sometimes in terms of a card that was already quite high, that was the thing they wanted. And that was I mean, that was just a real start point for the conversation. And I spent hours creating pictures to support these conversations. And what I actually found was most useful when I went along was just paper and pen, because it's so fluid and flexible. And if you don't know where the conversation is going to go, which you don't really with solution focused brief therapy, so very much following on from what I still recommend what they say. So, you can't really know in advance what the session is going to look like. Paper and pens and objects in the environment and just sort of being creative. So, making sure they have their own paper and pen, so there was a sort of an equality there. I did a lot of drawing and terrible drawing, I did a lot of drawing and sessions, and then making use of whatever they had that they were comfortable using. So especially these days, with smartphones just being amazing, and there was this gentleman who prior to his stroke, he used to go to art galleries, but it was only after a stroke that he learned to paint. And we had some lovely sessions with him putting up various paintings on his phone and showing me. Although there was a lady with severe aphasia, where during the week, she would take photos and things that she wanted to share with me because she was pleased about. So, she would take photos of the various meals she'd cook during the week, and she would show me on her smartphone. So, we kind of, again, that's free speech therapy isn't it, that's what speech therapists do all over the world, you make the most of the skills that the person with aphasia has. And it just goes, I just love it when you get to a stage where you don't actually notice that someone has aphasia anymore, you are just having a conversation, and it just happens to look slightly different from the conversation if they didn't have aphasia. But yeah, and that's a part of solution focusing as well, to make the most of it, to capitalize on people's strengths and what's going on.
Jerry: Absolutely, what a great description. I just want to highlight some of those things that you talked about just a, you know, a toolbox for facilitating or supporting that communication within that solutions focused intervention. So, you talked about the talking maps, just a fabulous tool, and you even mentioned personal modifications in photos that you added, the rating scales, obviously really powerful written choice. You mentioned earlier, writing down those key words, doing some great drawings of your own. Yeah, and then phones are just so powerful, you know, so easy to pull out and just shoot. So that really speaks to how you get at all of that language exchange when you are talking with someone with severe aphasia or with, you know, difficulty expressing.
Sarah: And I guess we kind of, we pulled on the bits of solution focused brief therapy, which are more visual. So, scales are often used in traditional therapy. So, as solution focused therapy would have, say, if someone really established that what they really were hoping to focus on was confidence, then for a scale you might have, ten would be they're feeling really confident, and zero is the opposite. So, solution focused, you would tend to invite someone to place themself on that scale. So, if someone doesn't have aphasia, you tend to do all this scaling work verbally. But I would reach for my scale and I would do all you know, write one to 10 on the scale, and then I would tend to write confidence as a key word at the top of the scale and then they would, after they place themselves on whatever is true. What I quite like about solution focused therapy with rating scales is that use that then as a tool to help elicit what's already working well. So, you would spend quite a lot of time then, "well how come you're a three and not a two?" So what score, and then listing is lovely, because it's quite conceptually easy. And it's a quite a natural way of writing down key words. So, I tend to spend quite a lot of time looking at what's already going well. And then it's very nice and visual to just then have a little area again, one step up to four. So, what does four look like? Again, these are very open questions. And sometimes, you know, you have to really scaffold much more than you would do if someone didn't have aphasia, might try different options with a partner as well. You know you get to know what people want, and what works for them, and some people found these very open questions hard to see how to scaffold it. But I still think that there's something quite nice about these visual scales, what does this look like when you start to scale?
Jerry: Absolutely, really powerful tool. And like you said, those comparisons of, "why weren't you a three? Why are you a four? What would it take to get to a five?" Open ended, but gives them the direction to say what they want to say, rather than us constraining that. So just to kind of follow that track of kind of delivering focused brief therapy, and then maybe some of the challenges that you encountered? Can you share a little about that, your experience?
Sarah: Would it help if I talked a little bit about what is solution focused brief therapy?
Jerry: Yeah, why don't we start there? Yeah.
Sarah: It's just one of many psychological therapies. And I have to say, I think my start point for the project was, was probably just, I want to show that it's possible to adapt psychological therapy, and I want to look at the role of speech and language therapists, and I've happened to do it through solution focused brief therapy. I think solution focused brief therapy aligns quite well with my speech therapists' sort of values of what they want from their work. And it's, in the UK is already quite used by speech therapists. And I think they find it's an approach that they can integrate with other language therapy work, they quite like it. So that was one of my reasons. And also, I had a little bit of training in it before I started my PhD. So, it was sort of on my mind, a therapy approach that I liked. So, to tell you a little bit about it, it originated in America, a family psychological therapies, and it started with Steve De Shazer observing, was one of the originators of the approach, observing family therapy sessions. And he noticed that most of the time these sessions were spent looking at the problem. And just occasionally a bit of therapy time is spent looking at exceptions to the problem. And his observation was that when session time was looking at these exceptions, it seemed to be associated with more progress. And that was kind of the seed of the therapy approach. So, there's a strong part of the therapy approach that says, well, whatever the problem is, there are usually times when the problem is less bad or not even there, and if we look at those times, what's happening then, perhaps that can be the building blocks to help people move forward. So, I would say as an approach, it's less interested in diagnosing problems and looking at problems, and it's more interested in noticing where people want to move towards, where they're wanting to get to. And it's less interested in problem solving and looking at what's going well, what's already going in the right direction that we can capitalize on. And I think, for me, a quite an important part of the approach is this idea that the client is the expert in their own life, not us as therapists, but it's for the client to know what's important to them, what matters to them, where they want to get to. And it's our role to help them work at how they want to move forward. So, that sounds quite straightforward. But actually, it's really quite hard to sort of sit on your hands and not give people advice and not stop to give people advice and tell people what to do. We'll not give people suggestions, but just to, to trust that they will have the resources within them to find their own way forward, so it's our role perhaps to facilitate that happening. And I think there's quite, there's a slight misconception, I think about solution focused brief therapy, that it's a very half glass full approach, and it's not really noticing, not giving space to the problems. And to be fair, sometimes that is how it's applied. And I think I felt really strongly in SOFIA that wasn't what I wanted. From my experience of delivering the approach, I think when someone's had a stroke, and you're a speech therapist, often, sometimes you're the first person ever really had the chance to really talk through what that's like. And I think that type of acknowledgement was always an important part of the approach for me. So, there's a sense of, some people have described those particular solution focused writer who does talks about one particular acknowledgement and one certain possibility, but I've always really liked that as the kind of metaphor for a sense of spending session time really listening to the person and being there with the person and then sort of shifting away when you feel it's right to think about possibility, and helping them to work out how they can live with it. And having belief and hope that it is possible to live with it too. So, there's sort of oscillating between the acknowledgement and possibility and I think that's been, well for me that's an important part of the therapy that we delivered in the trial. This sense of giving people space to talk about what's hard. And I think unless someone's feeling that you're really listening to that, it's quite hard for them, perhaps to want to trust you to make, to talk about how they're going to move forwards.
Jerry: Yeah, terrific. Just to highlight some of those key points, that idea that client is the expert in their life and how they live their life. And we really need to inhibit giving our own solutions because they have the capability of coming up with their own. And I just love those two frames, acknowledgement and possibility. So, yeah, terrific. What kind of challenges have you run into in terms of delivering that?
Sarah: So, there were three therapists delivering the therapy in the project and I was actually just reading through the interviews quite recently with the other two therapists. So yeah, I had lots of different hats on in this project, which is quite interesting. I think what was positive was that they found a very enjoyable therapy approach, delivering a rewarding and I thought it was feasible for speech therapist to deliver it. I think that where it was more challenging was, I think I found couples work more challenging when I was working with the couples. And I think for me myself, because I have had high quality training in solution focused brief therapy and psychological therapy. And I think for me, I really benefited from that additional training. I think it is you know, we're not couples' therapists. I think you can feel uneasy going into a session working with a couple where there is a sort of disharmony. So, I think maybe I sort of extra support for therapists in that situation. I think the therapy approach can work quite well, while I think it is challenging. I think the other thing that's challenging is when there's more severe distress. So, in the fellowship project, people could take part whether or not, whatever their skills and developing skills. So, there was a lot of people actually in the project who had a very high developing skills when we started the project, which is quite interesting because the therapy approach is really designed for people with high, you know it was designed helping to make change in other people who didn't really want to make the change happen to everyone which had its own challenges. But the people who were very distressed, I think there was a sense that they needed some real time support to help them to handle that and feel reassured that if someone was really that concerned about their mental health, that they have somebody to turn to. And I think that's really important that we're speech therapists, were not mental health professionals. And if you're working with someone, you think that, yeah, he's got mental health issues that you're concerned about to know that you've got back up somehow and you've got someone that you, it's just not all on your shoulders. So, I think that was a challenge. As I said, this is a challenge that we hadn't anticipated, that there would be people in the project who were really content in themselves, that they found a way to live with their life and they're taking part in the project because they were curious and wanted to contribute to research. And so, they did the therapy with us. And the therapy is designed to help people build change. And these are people who felt a way to live. They didn't really want to be making change. But there was one lady I worked with, a lovely, lovely, lovely lady and by the end of therapy, her first therapy session said, you know what, you seem to be, you know, you found this lovely way of living. Do you want me to come back to do the other five sessions? And she was very keen that I did. And she'd taken part in the project, it was her right to have these sessions. So, she had all six sessions. And then I guess, well, they were very special sessions. We very much sort of more future focus, looking at how you want to be shifting your life going forward wasn't really that much of a thing for her because she didn't. She was very frail and elderly, but she found a way to live with her things in her life. And so, we did a lot of time noticing everything that she was later a very special person. And I remember those were quite profound sessions really, I felt there was a real connection that she wasn't looking to make change. And whether it's quite hard in terms of the project, talking to people in the project who don't want to make change. This clinical trial is all about making change. But I think sometimes there is a value in conversations which don't necessarily lead to change, but there is something about the connection there that's important.
Jerry: Absolutely. Just kind of affirming the path that you're on. And like you said yourself, that human connection definitely may not measure the same way, but definitely important. When you were talking about that idea of people that have clinician's kind of having that back up, it just kind of reminded me of Ian Kneebone's stepped care model and how that is to know, you know, when you're kind of, when you need to hand it off or at least collaborate with someone else for those higher level needs for sure. Can we talk a little bit about the SOFIA trial and kind of where that played in?
Sarah: Yes, of course. So, the SOFIA trial was the feasibility randomized control trial and so is underpowered to definitively answer, is this therapy approach effective? So, the questions instead that we're asking from is, is this going to be feasible to scale up into a definitive full scale trial. So, we look at can the approach do this okay? Can we retain people within the project, if we do the assessments right, if we've got the training and support for the clinicians right? Is the therapy approach acceptable? Is it acceptable to deliver this as speech therapists? So, these are the sort of questions. And we recruited 32 people, half of them were randomized into the immediate intervention group. And we had to weight this design so half of them receive the intervention at six months. So, this is a group of 32 people. And in the end, two people withdrew. So, we have 30 people stay to the end of the trial and received therapy. And it was mixed methods. So, we interviewed all 30 of them. So it was, it was very interesting. And it's not so much about you know, have do people with aphasia experience receiving a psychological intervention. So that was a really interesting interview to read and it's quite an exciting stage. We've finished the trial and we were very lucky in the sense that we did our final assessment visits before COVID. And it's a bit poignant reading the interviews because it makes you wonder how people are over the last few months. But yes, so we're at the stage where we've pretty much finished all the analysis now. So, we're just about to start submitting. I don't know if you'd like me to share some of the...
Jerry: I was going to say, can we get a little sneak peek maybe before those papers come out?
Sarah: Yeah, that would be my pleasure. So, in terms of feasibility outcomes, since it's a feasibility trial, we were really pleased that the primary comparison point, the six months randomization and at that point we collected outcome measures from 30 to 32 people. So, 97 percent, which has really exceeded our expectations. And in terms of people adhering to therapy, so two people withdrew, and so out of 30 people who received the therapy, 29 of them received all six sessions, and one person received five. And to adhere, researchers said they needed to receive at least two, so all good. We recruited on time and on target. And I think there was, we were lucky, and we had a nice buy in from our sights, and I'm so grateful to our sights. And I think they kind of, the speech therapists I they were just really pleased to have a project that they could refer in people with severe aphasia. So, they were very supportive. And, yes, in terms of sort of any outcome measures, primary outcome measures, it seems to work fine. We have minimal missing data. So, thumbs up in terms of the feasibility outcomes, which is so lovely. In terms of the qualitative data, yeah, overwhelmingly the participants liked it. So, I think we can say it was a highly acceptable therapy. There were some kind of things that came through in terms of what they valued about the therapy; they valued having someone notice their achievements and what was their successes, they valued being able to have someone listen to them talk about their hopes and what they were hoping for, for in the future, they valued being able to share their experiences and their distress and have someone listen to them, and they valued connection and companionship. Some of them said one of the best things in it was having fun, having a laugh with a therapist. And that's something I really liked and that's what I really valued. And it came through as this really big thing, their relationship with the therapist, and how that was important when you're going to be a part of therapy for them. In terms of changes, not everyone was wanting to make change. But people talked about you know we have some nice things in terms of feeling better in themselves, in terms of sort of being more able to talk to family and friends, going out a little more. And then we sort of sectored people into four groups in terms of how they respond to therapy. So, they were one group we said was the changed group. So, these are the group of people who the therapy came at a really good time for them. Just constantly it had come at a time when they were in need of some kind of, not a need, but it really benefited them having this therapy approach. It led to sort of meaningful impact for them in their lives. And that was about a third of the group. And then there were two small groups of about five people in each group. There was one group where they called the complementary group, where they were on an upward trajectory, they were making a lot of progress, And the therapy, the research project therapy, was one small part that and I knew that they probably would make an upward projection anyway, but it was a positive thing and it helped them on their way. But we called it complemental. And then there was another little group of about five people that we called discordance. So, they were people who the therapy was misaligned, they liked the therapy and they like their therapist generally, but the therapy was misaligned of what they were looking for. So, they wanted language therapy. They wanted empowerment work. They wanted someone. We weren't at the end of the day psychologists, we were speech therapists, we could have done many therapies with them and that's what they wanted. We did solution focused brief therapy. So, there was a sort of mismatch and they were a bit you know, they wanted exercise. And it's frustrating to kind of think in clinical services, you could have given them that and done solution focused brief therapy around the edges perhaps, would have perhaps part of it for some of them is coming to terms with what they could and couldn't do with the aphasia and that. And then there was another group. It was about a third of the group who we called the connected group, and they weren't looking to make changes from the therapy. They weren't coming into the project trying to, with the idea, and our whole concept of change to come from us as researchers really. They came out of curiosity of contribution and what they really valued was this connection with the therapist, and we called them the connected group. They really liked therapy, the highly valued it, but it was about the connection of the therapist rather than wanting to shift or make changes. And to be fair, I think we found the ending of therapy the hardest. And it made me feel that there's the duty of some kind of ongoing support, which wasn't part of the trial protocol. But I think for them it was, yeah, if I had to run this trial again and if we had people in that sort of connected group, I would think, what kind of, is this important that a part of this is looking at? So that's qualitative. And in terms of the clinical outcomes, as my statistician keeps telling me, he is very much on feasibility trial and the power, but the primary outcome measure, the primary comparison point, which is six months post randomization, it seems to be going in the right direction. But, as my statistician keeps telling me it is the small groups and we can't ever extrapolate from the statistics, but it does seem to be promising.
Jerry: Well, that sounds great. I was going to ask you a little bit about the implications of these findings to everyday practice. I think you kind of touched on that. Any kind of takeaways or thoughts on that piece?
Sarah: Like I said, it is really encouraging that the speech therapists on the trial found it a positive therapy to deliver. So, it does suggest that speech therapists, who have an interest in this area, if they get training in a kind of brief psychological therapy, it is a possibility. And I would say that sort of the therapists in this trial did have monthly clinical supervision as well as quite a lot of initial training, and they had real time support when they needed it too. So, they had that sense that they felt quite nurtured, I think, within the project. And that was important. I would say the theme of feeling connected just speaks to value that the participants placed in being able to share how they were experiences to suggest that that kind of active listening and being there with someone and sort of listening to how someone is, that's of real value. And if a speech therapist has done that in a session, they should probably come away from that session feeling really proud that they have done something important. And I suppose my other thing is I'm a believer in this joint work between mental health professionals and speech language therapists. And I think going forwards, I know I've personally really valued from it, having mental health professionals in my supervisory team of EBSCO, I urge them for advice and having a kind of clinical support as well. And when you're feeling someone is very, very distressed in recognizing that as a speech therapist, that's fine. And that much of our role is working with mental health professionals.
Jerry: That's terrific. I'm looking forward to reading those papers when they come out.
Sarah: Thank you.
Jerry: I'm on the edge of my seat for sure, it is really important work. In the meantime, is it okay if we share, you have a severe trial resource page, is it okay if we share that link with our listeners?
Sarah: Absolutely. Yeah, thank you.
Jerry: Excellent. Well, I could continue this conversation all day long, so probably better wind it up. I'm wondering, I just want to give a nod to this as a little bonus. Would you be able to share kind of a nutshell little version of your work on befriending in the SUPERB trial?
Sarah: Yes, of course. So, the SUPERB trial has also just come to an end and they're also just writing up papers and yeah. So, that's where people with aphasia, where Mastrov befriended people who have recently come out of hospital with aphasia and the feasibility outcomes, again very, very good and strong in terms of the clinical outcomes. Really encouraging again, the statistician saying we can't over play these. But it is looking very encouraging in terms of the primary outcome measure, which is marriage, and preventing people becoming depressed. So, within SUPERB it was only people who scored as not depressed who were eligible to take part. And in terms of follow up, a 10 month follow up, it does seem that there's a difference between groups in terms of how many people results, in terms of the clinical outcomes and in terms of the qualitative side which is the side I've been most involved in. Encouraging. Yeah, there seems to be something special about an intervention delivered by people with aphasia. And at the end of the day, they can offer something that me as a health professional I can't offer. And yeah, a unique understanding and ability to empathize from having lived with the aphasia, some sort of sense of role modeling as well. This is, it's possible to live with this particular guilt, with the part of the data of experience of the defenders. And I would say that I found it a very challenging intervention to deliver, all of the logistics of organizing appointments and organizing the travel, and it can be quite challenging in terms of if the friend, the person receiving the befriending is upset or changes their mind about wanting intervention. I think that's quite hard, but they found it a very rewarding intervention to deliver and I found it very satisfying that something that was really painful in their life, but being able to use to help other people. And I think that was quite powerful. And I think they felt very pleased to be involved with the trial. And I think what they would highlight is that they were very it was very satisfying experience for them. And they thought it was making a difference, that the supervision and training was really important. And I think the real time support, as well as if they were feeling a bit stuck, that they knew they had someone and they got peer support so they supervision in the group, and I think that was really valuable. I sat in with the person doing the supervision, and I think she was wonderful. So, I think it was a lovely intervention.
Jerry: Wow, that's terrific. Again, waiting for that one, too. Well, this has been a fabulous conversation. So, on behalf of Aphasia Access, we 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 info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.
Resources:
SOFIA trial resource page: https://city.figshare.com/collections/SOlution_Focused_brief_therapy_In_post-stroke_Aphasia_SOFIA_feasibility_trial/4491122
On behalf of Aphasia Access, we 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 info@aphasiaaccess.org Thanks again for your ongoing support of Aphasia Access.
