Episode #86: Making Aphasia Groups Work: A Conversation with Kathryn Pettigrove

Interviewer info 

Lyssa Rome is a speech-language pathologist on staff at the Aphasia Center of California and in private practice. She is a member of the Aphasia Access podcast committee.

Guest bio 

Kathryn Pettigrove is a speech pathologist passionate about supporting wellbeing and connection for people with aphasia and their loved ones. She has worked in acute stroke wards and in- and outpatient hospital rehabilitation, but most loves engaging with people with aphasia in community settings, and is a particular advocate of community aphasia groups. Kathryn is a PhD candidate with the Aphasia Centre of Research Excellence (Aphasia CRE) at La Trobe University in Australia where her research focuses on aphasia groups and their facilitation. She also works as a clinical educator at the University of Sydney and serves on the Board of the Australian Aphasia Association. Her other loves include coffee, hiking, and singing with her a cappella choir.

     

Listener Take-aways

In today’s episode you will:

• Identify different models for community aphasia group facilitation.
• Learn about the skills required to successfully facilitate aphasia groups.
• Understand the range of roles speech-language pathologists can play within community aphasia groups. 

 

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 in 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 features Kathryn Pettigrove. Kathryn is a PhD candidate with the Aphasia Center of Research Excellence at La Trobe University in Australia, where her research focuses on aphasia groups and their facilitation. She also works as a clinical educator at the University of Sydney and serves on the board of the Australian Aphasia Association. Welcome, Kathryn, and thank you for talking with me.

 

Kathryn Pettigrove 

Thanks, Lyssa. I'm really happy to be here.

 

Lyssa Rome

So what motivated you to explore aphasia groups as part of your clinical practice?

 

Kathryn Pettigrove

It's a bit of a story, I guess. I had been working in inpatient, acute and rehabilitation wards for the first four and a half years or so as a speech pathologist. And in those contexts, I worked pretty exclusively, almost exclusively, in impairment therapy in one-on-one settings. And it was great work, I really loved it, it was really important work. But I just really often had this feeling that I wasn't able to do nearly as much as I wanted to for people with aphasia before they were discharged back home and back to the community. And I think that's a common experience actually, that people have. 

So I decided that I wanted to shift out of hospital settings for a while and see if I could pursue some other paths that would give me opportunities to work more closely with people with aphasia. One of the first roles that I took on after that was working as a speech pathologist for the Aphasia COMPARE trial that was happening in Australia at the time, led by Miranda Rose and her team. These trials involved delivering aphasia therapy, intensive aphasia therapy, over two weeks for people with aphasia in groups of three. I know that on the Aphasia Access podcast, you guys sometimes talk about “aha” moments. The very first day that I showed up for work in the trial, with this group of three women was just full of “aha” moments for me. 

So the first one was that we started to do language therapy in the group. I have not had that experience before of delivering language therapy in a group setting. Almost straight away, I just thought it was so amazing how much more engaging it was, how much more motivating it was for everybody involved, and how much more realistic it felt to actual communication. The participants in the therapy were communicating in a way that reflected real communication, it was much more social, it was much more interactive, not just transactional. I thought, “How have I not realized this before, how much more reflective of communication group settings can be?” So that was the first sort of “aha” moment for me. 

But then after that, in the lunch break, we were chatting and getting to know each other. I learned that the three women all knew each other because they were part of the same community aphasia group. And they were so motivated to tell me about their experience with this group. They said to me that it had been the most important part of their experience with aphasia, the thing that made them feel the most normal again, one of them said to me that she had lost all of her friends after her stroke and aphasia, and this group gave her a community again. 

The group sounded amazing to me, because it had actually been set up and established and run by people with aphasia themselves. So there were a group of, I think about four people with aphasia, who had met in hospital, they lived nearby each other, and they started meeting just for coffee to catch up. Over the years, it grew bigger and bigger and more people with aphasia joined. It got to the point where I think it had about maybe 14 members from the surrounding region, people would drive an hour or two hours to come to this group. They organize everything themselves, they decided their activities and their agenda. They spread awareness of aphasia in their community. They fundraised, and with the funds they raised, they hired speech pathologists to come and do language therapy with them some of the time when they wanted that. It was just something so different from my previous model of support and rehabilitation for people with aphasia. And it was clearly so empowering and so enjoyable, and it just filled them with life. 

I just was absorbing all of this like a sponge, and really quickly, I just got very excited about community aphasia groups. So when, a few years later, I had the opportunity to work in this area for my PhD with the Aphasia Center of Research Excellence, I thought, I can't say no to this opportunity.

 

Lyssa Rome

What an amazing story that is. And how interesting too, that it was the people with aphasia, who were sort of shaping what they wanted to get out of the groups, and then bringing SLPs in. So I'm wondering, then, how what sparked the shift for you? Or maybe it wasn't a shift, but what sparked your interest in studying how groups are facilitated? Where did that come from?

 

Kathryn Pettigrove

Well, I suppose that experience was a big part of it, because although I hadn't been involved in community aphasia groups previously, I knew of them through, you know, my studies and through research that was out there. In my mind I had pictured primarily groups that were facilitated by speech pathologists. So this model was something different, that I hadn't been exposed to before. I was really interested to learn more about, but also because there's a lot of information, there's growing research all the time about how wonderful community aphasia groups are, which they absolutely are.

But there's also some more recent research, and in particular, some of the research from Lucy Lanyon’s PhD, about the fact that not only a good community aphasia groups beneficial, but groups that are facilitated poorly or less skillfully, can actually create negative consequences for people with aphasia. So it's not a benign situation. If a person with aphasia goes to a group that has been promoted as something designed specifically for them, and even there, there are challenges for them to participate and engage with other people, that can be really detrimental, especially for people with more severe aphasia. 

We want these groups to be welcoming and successful for people with aphasia, and absolutely not to create additional barriers for people with aphasia to connecting with communities. So that really sort of made me think that should be a priority, making sure that the facilitation of these groups has done really well.

 

Lyssa Rome

So your research led you to write a scoping review that included 177 texts. As I was reading it, I found myself really nodding along and recognizing some of your descriptions of the inherent challenges in facilitating groups, and also some of the skills required to do that job well. Can you talk a little bit about the complexity of facilitating aphasia groups?

 

Kathryn Pettigrove

Yeah, absolutely. You mentioned the number of studies in the review, which I just wanted to point out that that was actually really something that made me feel happy to know how much interest there is in community aphasia groups in literature. People are obviously really wanting to learn more about them, which is great. But yeah, I think there's definitely a lot of complexity involved in facilitating community aphasia groups. As speech pathologists, we know that it's not always easy to support successful communication, even with a single person with aphasia. There's a lot of things to be thinking about. So we are considering their aphasia presentation, their communication strengths and challenges, what strategies might be most or least helpful for them, and when and then hopefully, we're actually implementing all of those things, because we know that knowing those strategies is not always the same as implementing them well, with ideally, the goal of those really strong SCA strategies of revealing and acknowledging the competence of the person with aphasia. 

So I think it makes a lot of sense that those complexities are magnified when there's more than one person with aphasia present in a group or in the room. Because in the role of facilitator, you're not only trying to support successful communication between yourself and each of those members, all of those dyads, I guess you could say, but also facilitate successful communication directly between all of those members. So that might mean helping each individual person to get their message across, and also helping the other members of the group to be understanding each other person's message. If you have people with a range of different aphasia presentations and severity in the room that can present a challenge; it can be difficult. 

Then of course, that's not to mention all of the usual challenges that come along with facilitating any group. We know from other fields of research, like social work and psychology and counseling, that facilitating any group work involves challenges of managing dynamics and group cohesion, potentially resolving conflicts, trying to manage if there are very talkative or very quiet members. And that can be difficult without the presence of communication disabilities. So obviously, combining those two things, again, it magnifies some of those complexities. It's not not really surprising, I don't think that it does. 

But one of the things that we were really interested in in the scoping review was what was already known or what was being looked into about this process of facilitation, and what can make it successful. They were smaller, there was a subset of about 10 studies, qualitative studies that look specifically at facilitated behaviors that were seen to positively affect the functioning of the group and the cohesion of the group. That gave some really good foundational information for facilitators to be considering. They fell under three broad umbrella categories. 

The first one was taking approaches to equalize participation opportunities. So you know, trying to keep an eye on the engagement and the interaction of all of the members and provide space and opportunities and support for everybody to engage and join in. 

The second one was equalizing power imbalances. So trying not to really emphasize that there's one expert and one clinician, and then all of the people with aphasia are the clients who are there to have something fixed about them, or who have some kind of impairment, trying to really equalize those power imbalances. 

The third thing was equalizing communication access. So all of the things that you would expect: using multimodal communication and supported communication so that everyone has communication access to the activities of the group.

 

Lyssa Rome

All of those are challenges that I face, certainly. I want to ask you actually, specifically about the second one, because it is reflected, I think, in something that you write, in the paper about how SLP-led groups may inherently, if inadvertently perpetuate a power differential between the patient in need of treatment, and the expert clinician. So that quote from your paper, I think, is really interesting, because it highlights how that preserves the focus on impairment. I'm wondering what your thoughts are about how group facilitators or people running aphasia group programs can avoid perpetuating that power differential that you described?

 

Kathryn Pettigrove

Yeah, I think it's a really interesting point. I think it's really important to emphasize from the beginning that, obviously, speech pathologists are the communication experts. We're absolutely essential in the support and rehabilitation and advocacy for people with aphasia. We have a lot of really important roles to play. 

But I do think that we are often trained primarily to be therapists and clinicians who deliver therapy. We also very frequently are working within healthcare organizations or funding models that require us to view our progress and our performance in terms of impairment, improvement in impairment and basic function. 

I think that's changing. I do think that's changing slowly, you know, we're moving much more in the directions of social models of healthcare and the Life Participation Approach to Aphasia. But those really traditional and long ingrained systems don't change overnight, they change slowly. So often, speech pathologists are limited in what they're able to do. Clinicians will say that they feel that their service or their group service sometimes is only justifiable within their service, if it has a primary focus on improving language. 

This can, as you said, maintain that focus on impairment and trying to fix something. I think that also people with aphasia and their family members are likely to view speech pathologists in that way as well to look to them as the professionals and the clinicians who will be providing expert advice, and there is absolutely a place for this. So you know, there are groups that are going to be specifically for impairment based language therapy and groups that are about aphasia education, communication partner training, those types of groups. It's appropriate that the speech pathologist is leading the group and taking on a role of expert but that's not the only type groups that we want to see, there's a whole range of other types of groups that we want to see that don't necessarily require or benefit from such a difference in power, I guess. 

I guess the other thing that I would say is even where there is that focus on impairment or the medical model, there's absolutely lots of things that facilitators and clinicians can do to try and not create a power differential that is uncomfortable or not contributing positively to progress. 

Some of the things that we found in the review that really helped to equalize those power differences, there are a few things, but I think some of the main ones were, as I mentioned previously, always maintaining that focus on revealing and acknowledging competence of the people with aphasia that you're interacting with, regardless of whether the setting is impairment-based therapy, or purely social conversation and peer support. That foundation, being there at all times will make a really big difference, I think. 

Making room for humor, sharing humor with the clients, or the people with aphasia. You know, appropriate self-deprecating humor, having that ability to expose your own naivete in certain areas where, you know, you don't have experience in something and you're learning from the people in the group, because they know more about whatever it is, whether it's living with aphasia, or something completely unrelated, being willing to step out of that rigid role of I'm the expert, I’m the clinician, I'm in charge, can go a really long way to helping create positive dynamics within the group. 

 

Lyssa Rome

Absolutely. 

 

Kathryn Pettigrove

I think that the third thing, and I'll probably mention this a few times as we're talking is that one of the really important things is making it clear from the beginning to both the facilitators and the members of the group, what the purpose of that particular group is, because groups can have lots of different purposes and goals. If a person with aphasia is coming to a group thinking that it's going to be a social, open conversation, peer support group, but the facilitator is viewing it as a language therapy group, and is therefore exposing and correcting the errors that the person is making in their communication, that mismatch can be quite confronting, and uncomfortable. So I think making sure that everybody is on the same page about what this group is for can make a really big difference in keeping that power balance in check.

 

Lyssa Rome

I really recognize what you're talking about there. I can see how helpful those strategies would be in trying to address some of those imbalances that can happen. You talked a little bit earlier about alternative models for facilitation of groups. I'm wondering what some of those models are, how they might look different than the traditional model of SLP as facilitator, and what would some of the advantages and disadvantages of the different alternative models be?

 

Kathryn Pettigrove

There's a lot a lot to talk about in this topic, actually. That was one of the things that was really interesting about the scoping review, we saw a lot of different facilitation models represented. 

To start with, I would just say that, what I'm, you know, talking about here, and what we are talking about in our research team is not so much alternative models to the traditional speech pathology-led groups, but more additional models that can be used to extend that traditional model, because, like I was saying before, there's a really important place for speech pathology-led groups for people with aphasia, of different types and purposes. We don't want to get rid of those. 

But sticking to those only really inherently limits the group services that we can offer to people with aphasia. I mean, I think about Australia, we work primarily within a public health system and I know that in different countries the system is a little bit different. Here most aphasia services are offered within the public health system. Most aphasia groups that are led by speech pathologists are led by speech pathologists working in public health. So if every single speech pathologist in public health who worked with people with aphasia ran a community aphasia group, we still wouldn't have anywhere near enough groups for all the people living in Australia, who have aphasia and might like to access a group. 

So one thing is about increasing the numbers of groups that are available to people. But the other thing as well, is, again about the different types of groups and the different purposes that groups serve. So there's a big difference between a group that is primarily about language therapy, or a group that is about practicing functional communication strategies, versus a group that is more about peer support or a group that is simply about communication access to enjoyable group activities, like leisure activities, or conversation about current events. These groups are all quite different from each other, and probably require and benefit from different models of facilitation. So I just wanted to, you know, make that clear that it's sort of more about broadening what is available to people with aphasia.

 

Lyssa Rome

I like that distinction between alternative versus additional.

 

Kathryn Pettigrove

Yeah, exactly. Because there's a lot of wonderful work going on with aphasia groups at the moment. But we just know that it's not enough, it's not enough at the moment, and we need more numbers. I think it would be wonderful if eventually, all people with aphasia would have access not only to the single group in their area, but a range of groups that offer different services and meet different needs that they could choose from. That's a long term goal, obviously, but I think we can be moving in that direction. 

 

Lyssa Rome

Yeah. 

 

Kathryn Pettigrove

So in terms of the different facilitation models, in the scoping review, we saw a really wide range, the vast majority was speech pathology-led groups. But we also saw groups led by speech pathology students, groups, led by volunteers, groups led by multidisciplinary teams, and also groups led by peers. So people with aphasia themselves, sometimes co-leading with another professional, sometimes purely peer-led. So there were lots of combinations of facilitation models. 

There wasn't actually any research that specifically looked at comparing the different facilitation models directly and identifying their comparative benefits and disadvantages. But there were some qualitative interview studies with people with aphasia and family members, about their experiences with different groups and different models of groups. They identified some themes around some of the benefits of different types. 

So speech pathology-led groups were often really valued, because of the communication expertise that the clinicians brought, the experience that they brought, and also often an increased level of structure in those groups, especially for people with more severe aphasia. Peer-led groups, on the other hand, sometimes people felt that in those groups, they had a greater ability to actively contribute to the decision-making about what would happen in the group. Also to take on the role of helper themself. I think, in peer-led groups, people with aphasia often feel more comfortable to step up and encourage the co-members and help each other and give advice. Whereas in a speech pathology-led group, sometimes that didn't happen as much, potentially because the expectation was that the speech pathologist as the expert would offer those things. 

Again, these are just sort of general themes that were reported from the interviews. The main point, I think, is not to say that one model is better or best, but that there's a place for all different types of models, depending on the goal that they're trying to meet. 

 

Lyssa Rome

So following on that you write that sometimes SLPs can take on more of an advocate or a coordinator role rather than being strictly a leader. Can you say a little bit more about how it works when SLPs take on that advocate or coordinator role?

 

Kathryn Pettigrove

Yeah, I think that, as we've already talked about, speech pathologists, I think, are always going to have a really important role to play in supporting groups for people with aphasia—all types of groups for people with aphasia. But it probably doesn't necessarily need to be as the facilitator or the group leader sitting in the room for every session of every group that runs. I think that we want to provide that service when it's needed. But then, in situations where we might not be facilitating, it's still going to be important for speech pathologists to be available in other roles, such as supporting roles and coordinator roles. We know that the facilitators of groups, both volunteers and peers with aphasia, say that they do need support in these roles. That might be for administrative tasks, like contact lists, and venues, and that sort of thing. But it might also be for things like problem solving, if there are challenges in the group, and also as a link back to a speech pathology health service for ongoing referrals, or for them to access extra speech pathology in future if needed. So there's always going to be a role for speech pathologists to play there. 

The other thing is that we might be able to look at transitioning groups that were initially speech pathology led to become a bit more independent and peer-led, where the speech pathologist can support the group in this direction and gradually move back in their role. Because something that's really important, I think, is that we don't want to create a situation where people with aphasia are dependent and reliant on the speech pathologist in order to access group services and enjoyable services with other people with aphasia. 

So our role is going to remain crucial across all the different types of groups. But it may change over time and in different settings.

 

Lyssa Rome

It makes me think about how, when we were meeting in person at the Aphasia Center of California, I always loved it when group members would talk for over an hour in our conversation group or in a book group, and then they would go across the street together and keep on talking without any speech pathologist there.

 

Kathryn Pettigrove

Absolutely, yeah. I think that that's, you know, one of the greatest signs of success. In our role as speech pathologist, if we've enabled and connected people to do that. I just think, oh, that's the best outcome.

 

Lyssa Rome

Yeah, yeah. So I wanted to ask you a bit about peer facilitation. We don't see as much of that here in the US as, for example, in the UK. So thinking around the world, where is that happening? What are some of the benefits that come from having people with aphasia facilitating groups?

 

Kathryn Pettigrove

It's interesting, because there were peer-led groups represented in the review, but mostly, in fact, I think exclusively, only from 2000 and onwards. So they're appearing in the literature, more and more now, and I think that that's a trend that we're going to continue to see grow, which is really nice. So, as you mentioned, peer-led models have a longer history in places like the UK. So Aphasia Connect, which is now Aphasia Re-Connect in the UK, and also the Speakability groups in the UK all have been built on a model of peer support and peer leadership. 

We're starting to see it more in other areas now. So we're looking, there's some research happening right now in Australia, looking at peer-led community aphasia groups, there's some work that's been happening in some health networks in the States and in Germany and in Canada. So it is starting to pop up, which is really nice to see. 

In terms of the benefits, I think, as well as some of the things that we touched on before in terms of the members feeling potentially more empowered to take decision making roles, we also see from the literature on peer-led groups, that there's a real benefit that the members and the facilitators have that shared experience of aphasia, they can really understand each other and their experiences in a way that a speech pathologist or another person who doesn't have aphasia can't really do. 

It can be really empowering not just for the group members, but for the people with aphasia who take on facilitation roles, to step into a volunteering role or role where they have an opportunity to help and support others and demonstrate their own knowledge, use the experience to support other people, that's something that we know is really important to people with aphasia for quality of life. So that's something that can be really lovely. 

It also just offers a situation where groups and maybe not as constrained as they might be within a more traditional model, especially within a health service, they might have more freedom to to decide where they want to meet, what sorts of activities they want to do, and really take charge of those decisions, which is really lovely.

 

Lyssa Rome

So what about training? It seems clear that non-professionals—peers or volunteers—would need training and you found that most mentions of facilitator training describe programs for those non-professionals or non-SLPs. But what about for SLPs? You write about how there might be an assumption that SLPs would automatically be sufficiently trained and qualified to facilitate community aphasia groups. What kind of training are SLPs getting and what kind of training do you think that they should be getting? 

 

Kathryn Pettigrove 

Yeah, I think this is a really interesting question. Facilitator training is going to be the focus of my PhD, actually. So we could see from the review, and the things that we've already talked about today, that it's pretty clear that specialized training to facilitate community aphasia groups well is suitable and necessary. I think, you know, there are a range of complexities to consider and potential risks the facilitation isn't done well. So I think training is something that is really relevant and was advocated for, by lots of the authors in the review as well. But it is currently not something that typically happens as part of speech pathology curriculum. So there might not be any training in facilitation of groups of any kind or of facilitation of groups for people with aphasia and students, especially more and more these days, might get clinical placements in these areas, but they may not. So there's certainly not a blanket level of training and education that is provided to speech pathologists as part of their qualification. 

We also know from previous research and surveys of speech pathologists that speech pathologists often feel that their level of knowledge and skill and experience with group services is a barrier for them. This is something that not all speech pathologists feel confident to do and feel that they have the skills and knowledge to do. So I think it's something that is probably a little bit of a gap at the moment in speech pathology training. 

I think that there are certainly speech pathologists who are getting really nice training in this area. If they're lucky enough to have a clinical placement where they're working with aphasia groups and they have a clinical educator who's giving good training in this area, or if they work in a center that provides training for staff in order to run aphasia groups. There's certainly some, some great training happening out there, but it's definitely variable depending on where you are and what your experience is. 

So in terms of what's happening in training and what should happen in training, in the review we saw a range of different things. Pretty much all training for facilitating community aphasia groups, included information on what aphasia is, especially if it was not for speech pathologists and on strategies for supporting communication in the setting of aphasia. 

Sometimes it included things like the underlying purpose or philosophies underpinning the group services, but often it didn't include that information. Sometimes it included training about general principles of group cohesion and group dynamics. There are a range of other things, and I think all of those elements are really important, but they were provided in some situations and not others in different combinations. So a big mixture and in some settings, all of the above were happening. But that was much less common, definitely much less common. 

I think something that I think about as well is that I, I think I mentioned this before in the Australian context, we work, currently anyway, much more on a public health model of service for aphasia. We don't have currently a large service of aphasia centers that are staffed specifically for this purpose and that work on a fee-for-service model. So in contexts like that, I think it's even more important that speech pathologists have access to training, so that in that context, they can feel confident and skilled to support groups like this to come about. 

So that's something that we'll be looking at in my PhD research with my team. We'll be looking at some training for speech pathologists about facilitating these groups, understanding the roles of different groups and, and where they sit in services for people with aphasia, how to facilitate them well, but also how to support other people to facilitate them who might not be speech pathologists, volunteers, or people with aphasia themselves. So hopefully we'll have more to share on that topic in the coming months and years. So, maybe we'll talk again some more about that. 

 

Lyssa Rome 

I would love to, it sounds really important and really interesting. I look forward to reading your research down the road. In talking about facilitation of community aphasia groups, it's been very validating to hear you describe what you found in terms of the nuances of that work. And also really exciting to think about the possibilities for SLPs to sort of deepen the way that we are facilitating groups and that we are supporting groups more broadly. Do you have any last thoughts that you'd like to share with our listeners about that? 

 

Kathryn Pettigrove

I feel like I could talk about this topic all day. I just think that groups are so wonderful for people with aphasia and I saw that first hand, not really until several years into working as a clinician, and I think that's probably the case for lots of people. So I think the one thing that I would really say to speech pathologists listening is if you don't currently have any groups happening in your area, have a think about whether you might be able to get something up and running, because they're just such a beautiful way to connect people with aphasia to each other. We know that this is something that people with aphasia say is crucial and so important and meaningful for them in their experience of living with aphasia. There is some, you know, some good research out there that gives some good guidance and information about the facilitation skills that can support good groups. So definitely check that out. I think the best thing is to get started and see for yourself how beneficial they can be. 

 

Lyssa Rome

I really agree. It's been a pleasure talking with you. Thank you, Kathryn, for sharing your expertise with our Aphasia Access members. 

 

Kathryn Pettigrove

Ah, thanks, Lyssa. It's been a real pleasure talking to you. 

 

Lyssa Rome

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

References and Resources 

Pettigrove, K., Lanyon, L. E., Attard, M. C., Vuong, G., & Rose, M. L. (2021). Characteristics and impacts of community aphasia group facilitation: a systematic scoping review. Disability and rehabilitation, 1–15. https://doi.org/10.1080/09638288.2021.1971307

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Aphasia CRE:

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Australian Aphasia Association:

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