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Episode #97: Aphasia Is a Family Thing: A Conversation with Marie-Christine Hallé
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Interviewer info
Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.
In this episode, Lyssa Rome interviews Marie-Christine Hallé about her work on including significant others in aphasia rehabilitation, communication partner training, and knowledge translation.
Gap Areas
This episode focuses on Gap Area #4, markedly insufficient training and education of family or carers regarding aphasia and communication strategies; and Gap Area #9, lack of services specifically for family members of people with aphasia across the continuum of care.
Guest info
Dr. Hallé is a lecturer at the University of Quebec at Trois-Rivières and the coordinator of SAPPA, a service for significant others of people with aphasia in Quebec Province, Canada. She completed a PhD in speech language pathology at University of Montreal, and a postdoctoral fellowship in knowledge translation at McGill University. Her work aims to support the inclusion of significant others in aphasia rehabilitation, as well as communication partner training. To promote the uptake of these best practices, she studies professional competency development among speech language pathology students with respect to evidence-based practice and counseling, as well as professional practice changes among clinicians. She is a recipient of the 2022 Tavistock Trust for Aphasia Distinguished Scholar Award.
Listener Take-aways
In today’s episode you will:
- Learn about changes in family relationships due to post-stroke aphasia.
- Understand how speech-language pathologists can support significant others of those with aphasia across the continuum of care.
- Identify barriers and facilitators to implementing communication partner training.
Edited show notes
Lyssa Rome
Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication impairments in my LPAA-focused private practice.
I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature Dr. Marie-Christine Hallé, who was selected as a 2022 Tavistock Trust for Aphasia Distinguished Scholar, USA and Canada. In this episode, we'll be discussing Dr. Hallé’s research on significant others’ experiences of post-stroke aphasia, communication partner training, and knowledge translation.
Dr. Hallé is a lecturer at the University of Quebec at Trois-Rivières and the coordinator of SAPPA, a service for significant others of people with aphasia in Quebec Province, Canada. She completed a PhD in speech language pathology at University of Montreal, and a postdoctoral fellowship in knowledge translation at McGill University. Her work aims to support the inclusion of significant others in aphasia rehabilitation, as well as communication partner training. To promote the uptake of these best practices, she studies professional competency development among speech language pathology students with respect to evidence-based practice and counseling, as well as professional practice changes among clinicians. Marie-Christine Hallé, welcome to the Aphasia Access podcast. It's great to have you here.
Marie-Christine Hallé
Thank you.
Lyssa Rome
I wanted to start, as we often do, with asking you about whether you've had any “aha” moments—significant experiences that were critical in your development as a speech language pathologist?
Marie-Christine Hallé
Great question. In fact, I have an “aha” moment, which is also kind of an “uh-oh” moment—like the perception of a problem.
When I first began to work as a speech language pathologist in rehabilitation, I was very interested and motivated to work with people with aphasia and their significant others as well. I had completed my master’s in speech language pathology, during which I had done a research project. I had read transcripts and analyzed interviews of significant others of people with aphasia. It raised my awareness regarding what significant others can go through—the challenges that they can have when communicating with the person with aphasia.
So I was really motivated to try to make a difference in their lives, to help them to better communicate with one another. But in my clinical practice, I had the feeling that I didn't actually succeed to go there. I was expecting to have these conversations regarding how to help them communicate with one another. But I was not seeing significant others that frequently. Or when I was seeing them, I sometimes had the feeling that the conversation I had with them was—not superficial—but I didn't get to the communication challenge I was expecting that I would get.
So this was kind of my “uh-oh” moment that motivated me to do a PhD. Because at this point, I was like, maybe we don't need to develop a new intervention, targeting significant others, maybe we need to better understand what is the experience of significant others? What are they what they are going through. And also to know about the experiences of speech language therapists as well. And if we better understand both experiences and how they fit with one another, maybe we can better try to actually help them and have the conversation I was expecting to have with them.
Lyssa Rome
That makes a lot of sense. I think a lot of us in clinical work find our ideals don't always match up with the reality. Right? And that specific, “uh-oh”/”aha” moment, brings us to the gap areas that we've been trying to highlight in the podcast. These are the gap areas that were identified in the State of Aphasia report by Nina Simmons-Mackie that was published in 2018. In our conversation in this episode, we're going to be focusing on two gap areas that you've identified here. The first one is Gap Area #4, which is markedly insufficient training and education of family or carers regarding aphasia and communication strategies. And the second is Gap Area #9: lack of services specifically for family members of people with aphasia across the continuum of care. So obviously, those areas are important to you and your work.
I wanted to continue by talking about how that “uh-oh” moment led you into some early papers, and early research that you did, looking at how aphasia changed relationships between people with aphasia and their care partners or significant others, and specifically, between mothers and daughters, where the mothers had post-stroke aphasia. So can you tell us a little bit about that research?
Marie-Christine Hallé
Yes. This research was conducted with four adult daughters of mothers who had aphasia, and we try to look at their relationships. We have identified how adult daughters helped their mothers and the different types of behavior that they could have. We identified how the type of behavior the daughter had was related to how daughters perceived their mothers.
So daughters could perceive their mothers as vulnerable or as having difficulty. They could also perceive her as having abilities. And sometimes when the major was seeing the mother as someone with difficulty or someone vulnerable, daughters would help their mother in a protective manner by doing things. Not at their place, but on their behalf or doing things for them. Like calling to take some appointment with a doctor, or sometimes censoring themselves, like avoiding some conversation. Like a daughter is saying that she had marital issue and she didn't want to worry her mother. So she would avoid having this discussion with her mother.
And the opposite, when daughters perceived more their mothers as having abilities, they would adopt trusting behavior. So encouraging their mothers to do things on their own, even if they may have some difficulty. So a daughter saying that she went to the bank with her mother, but she let her mother go and meet with a bank teller. Even if she saw her mom having some difficulties, finding her words, she let her mother try by herself. Or whenever they were using some communication strategies, recognizing that the mother had something to say. They were recognizing their competency. So that was a way of trusting her.
So we we kind of saw different type of relational scenarios, sometimes the mother could react by being satisfied, or sometimes being dissatisfied by the daughter's reaction. But we also identified how aphasia seem to complexify the adjustment to the relationship, because sometimes daughters seemed to avoid communication to solve their problem.
I have an example in mind of a daughter, who in the first place, kind of trusted her mother. She was living with her. She trusted her mother by going by herself to run some errands. So she left her mother alone in her house. So the daughter could go by herself go run some errands. But when she came back, she saw her mother was worried or crying. So she told herself—the daughter, she didn't speak about it with her mom, but she told herself, “I left my mother home, when I came back, she felt worried, I shouldn't do that again. Next time, I need to go to the grocery I’ll wait for my mom to be somewhere else at an appointment. So I won't leave her alone.” So instead of having an open discussion with the mother, asking, “What was going on? Are you worried? What could we do next time?”, she decided by herself not to solve this problem through communication. So it shows how aphasia can make this adjustment more complex, because you need to adjust to life with post-stroke aphasia, you may need to take some new roles and responsibilities, but because of aphasia, you may kind of avoid the use of communication to actually solve this problem.
Lyssa Rome
It sounds like some of those trusting behaviors really had to do with recognizing the underlying competency of the person with aphasia, these mothers with aphasia, and maybe also their abilities. I'm wondering how, recognizing that and sort of seeing these different kinds of perceptions that the daughters had about their mothers and the mothers had about their daughters and their level of satisfaction or dissatisfaction—how did that influence your own focus in your work on how speech language pathologists involve significant others in aphasia care?
Marie-Christine Hallé
I think it had the influence about how important it can be for us as speech language pathologists to involve significant others to better communicate with the person with aphasia, but to help them reveal and recognize their competency through communication. So this was kind of the the influence it had. How we can see that through communication, or that the competency that you can reveal through communication could then have influence on the relationship and domains other than communication.
It can even lead to a virtuous cycle, where you communicate with one another, you see the other’s competency during communication, but that can also foster some trusting behavior that can contribute to the person's autonomy. And at the same time as a caregiver, potentially, eventually less sense of burden, because the person can do things on her own. And the more the person does things on her own, the more you can see her as competent, as having abilities. That can nourish those trusting behaviors. So it's how we can connect what happens in communication, and what happens in the relationship outside communication as well.
Lyssa Rome
That makes a lot of sense to me. And I think that speaks to how central communication is for and how being successful in communication can have really broad impacts in the rest of someone's life and in their relationships and their sense of self as well. You've written about these experiences that significant others have of aphasia, and how that relates to their relationship with the person with aphasia in their life, and also their relationships with rehabilitation services. And I'm curious about if you could say a little bit more about what you've learned in those areas as you continue to study significant others and their experiences of aphasia?
Marie-Christine Hallé
Yeah, so by studying their experience of rehabilitation, what I learned is how significant others, when they get to rehabilitation after acute care, they get there in a state of being centered on the person with aphasia. So following the hospital, they may have feared to lose the person. They were there day in, day out at the hospital to take care of her, sometimes to speak on their behalf, making sure she receives good services. And then when they arrive in rehabilitation, they are in this state of being focused on the person with aphasia. So when they meet with health professionals, when they talk with health professionals, they talk about the person with aphasia. At the same time, health professionals respond by also being focused on the person with aphasia. So this kind of put significant others in the state of seeing rehabilitation as being about the person with aphasia, not necessarily about themselves. So this even influences their expectation of rehabilitation. If, for them, rehabilitation is about the person with aphasia, they will be satisfied by rehabilitation services as long as it fulfills their needs related to their caregiver role.
But what was really a revelation for me was also that what it can involve is that a significant other could speak of rehabilitation in really positive terms, saying, “Oh, that was a five star rehabilitation.” So they are very satisfied. But at the same time, they could also talk about struggling in their everyday life, needing some respite or having some challenges, maybe communicating with one another. So this is something else that I learned—how there was this possible coexistence between being satisfied with the services, but at the same time, going through some difficult stuff, and all that, because the rehabilitation was associated with the person with aphasia.
Lyssa Rome
Right, so they're not expecting or maybe even getting the message early on that aphasia rehabilitation is about more than just the person with aphasia, and that they also could benefit from, say, speech language pathology services, is that is that right? Is that getting it?
Marie-Christine Hallé
Yeah, absolutely.
Lyssa Rome
Where does that bring us in terms of what clinicians should know about how we can perhaps do a better job of bringing significant others in—I don't know, earlier on or in more meaningful ways—so that they feel part of the rehabilitation process.
Marie-Christine Hallé
So I feel there's something about the message we tell them. Yes, they can be centered or focused on the person with aphasia, but we have to think about what is the message we tell them, as well. So should we maybe be more explicit in telling them that aphasia is a family thing? That aphasia, yes, it happens to one person, but it affects all people surrounding the person. To let them know that the rehabilitation process can be about them as well. So I think there's something about these kinds of messages we tell them.
We also found that sometimes it could not be comfortable for them to think about them or sometimes some of their needs could be more kind of implicit at certain points, like their need to have a better relationship or better communication with the person maybe more implicit. So those more implicit needs, maybe we can more explicitly bring them or introduce them to significant others, so that they can feel that it's legitimate to feel the those kinds of things.
We can open discussion by saying we know how for some people communication can be sometimes difficult. Or sometimes you can understand one another but sometimes the topics you have in conversation are not the same topics as before. Or sometimes you can feel frustration we've heard this from other significant others. What about you? So to make it to make it okay to feel this or to help them maybe identify those needs that may be more implicit at certain points. So to open the discussion, make it okay, tell them like very clearly that it can be about them, that we can be here for them as a family unit.
Lyssa Rome
What you're saying rings so true to me, and the importance of letting significant others know that their experience of aphasia is also important and also worth addressing. You also then studied, I think, maybe more generally, but maybe you can tell us more about what else significant others need from the rehabilitation process?
Marie-Christine Hallé
Well, by studying their experience of rehabilitation, and understanding that they were focused or centered on the person with aphasia, it helped to identify a variety of needs that significant others can have. Something that can be helpful is how we can associate significant others’ different needs in relation to the different roles that they can have.
So when I said that significant others associate rehabilitation with the person with aphasia, or maybe themselves as caregivers, so there have they have needs as caregivers—the need to have information, the need to have tools to help the person with aphasia, the need to have hope that things are going to be okay, or the need to be part of the rehabilitation team, the need to feel that they are considered as a partner in this rehabilitation experience. Those can be some things we have identified related to the caregiver role.
But they also have other needs. Like I said earlier, when I talked about communication, so they can have the need to have a better communication with the person with aphasia, the need to have a better relationship with the person with aphasia, and this is more related to themselves being, well,l significant others or are people with an affective link with someone with aphasia. So, spouse, daughter, friend, and in their kind of role, they have their communication needs and needs to have better relationships. And when we think of significant others as patients themselves, we also identify that they have the need for support, the need to be supported, and the need for respite. So we can see this variety of needs.
Some of these were previously documented before my work. But this understanding of the rehabilitation process kind of helped to classify significant others with their roles. When you think of an iceberg, some needs are kind of outside of the water, or the obvious one that you see, those related to their caregiver role. And some other needs during their rehabilitation process, maybe when I say implicit, those that are hiding. Because they don't talk about those needs, or because they are still not clear to them to formulate them as needs so that they can ask for help.
Lyssa Rome
Can you say a little bit more about what some of those under the surface needs were that you were able to identify in these qualitative studies that you were doing?
Marie-Christine Hallé
Yes. So I remember a spouse, when she was talking about communication, she didn't say clearly or explicitly, “I want to have better communication with my husband.” But she said, “evenings,” I don't know how to say not “evenings are long, but that are less busy as before, like, not boring, but like the time is different now that their the way we spend our time together is different because we don't talk much to one another.” So this is also what I mean by implicit—it’s that there was this feeling of discomfort regarding communication, but it's not necessarily formulated as, “I want to better communicate.” More at this point, it can be kind of a discomfort.
Lyssa Rome
Yeah, and it sounds like also maybe a sense of loss, right? We used to have this evening that was full of conversation, and now we don't have that anymore. Thinking about those needs both the explicit ones and the implicit needs, what role does communication partner training play in how we as speech language pathologists can support the significant others of people with aphasia?
Marie-Christine Hallé
I think it's by helping them to keep on using communication to maintain their relationship. You spoke earlier about the idea of loss—so, that the loss of the way communication used to be or the way the relationship was before. So to keep on communicating with one another, and to use communication to solve problems. Like when I spoke earlier of how aphasia can make it more difficult to adjust to life with aphasia. So, if we train communication partners to use different strategies to keep on communicating with one another, to find still enjoyable time to communicate, they can use communication more frequently for the pleasure of communicating, and also for the use of solving some problems they can have in relation to the new role and responsibilities they can have. To help them to keep on having frank and honest communication, like authentic communication. When they keep on talking about what they used to talk about, even if sometimes some subjects may be more complex. But how can we still get to some authentic, significant topics that they would like to talk about. Even perhaps, how it can help to have more balanced relationships. So because we talked about the needs significant others can have as caregivers, but they are not only caregivers. So if they don't want to feel only as caregivers—and the same thing for the person with aphasia, if the person with aphasia wants to feel that person as still a spouse, still a daughter, can the communication have something authentic, that still feels like their previous relationship? So not just as someone helping someone else. That's what I mean about this idea of a more balanced relationship.
Lyssa Rome
And I think that that really underlines the importance of communication partner training to the Life Participation Approach, right? Because if communication partner training is allowing people to fulfill other roles, other than just being a care partner, but also still being a spouse, still being a daughter, or a sibling, or in some other role—the original role—with his change of aphasia, then in order to support that, we as speech pathologists need to be able to really help people learn better communication strategies.
Marie-Christine Hallé
Yes, and when you were speaking, I was also thinking about, as you said, the these other roles they can have. You know, earlier I've talked about their need for respite, the need to be supported, and how we can even help them to have support from the person with aphasia. In this idea of balanced and authentic communication and relationship, it can be interdependent, right? So the spouse or significant other can help the person with aphasia, but if they want to stilll have the relationship they used to have when you can communicate and have the person with aphasia still play a role of support, that can also be a way to fulfill their needs. But yes, to make this connection with this Life Participation Approach, where both members of the dyad can play their the different roles that they can play in their social life.
Lyssa Rome
Yeah. Given the importance of that, it seems like that leads very clearly into some of your other work that involves looking at how speech language pathologists include significant others and how SLPs think about their work involving significant others. You did some really interesting research on that question. One of the things that really stood out to me in your paper was this idea that SLPs thought about working with significant others, as—and this is a quote from the paper—“a challenging bonus to the fundamental patient-centered approach.” Can you explain a little bit more about that?
Marie-Christine Hallé
Yes. So this idea of the “challenging bonus” is while analyzing the data and the interviews, there was this dimension of bonus, like of a positive addition. When speech language pathologists were speaking of their work with significant others, they saw this as a positive addition to their fundamental approach. They were explaining that their focus was on the person with aphasia. That was the focus of their work. That was the focus of their intervention. And if they could meet with significant others, then that was like the cherry on top. The basis was working with the patient with aphasia. And the positive addition was, “Oh, well, if I can meet with the significant other, then it's even better than they can provide me some valuable information about the person with aphasia, then I can better adapt or tailor some intervention to the person with aphasia because I have more information from the significant other about the person with aphasia.”
So this is the expression challenging bonus, it’s how I identify the bonus part in the interviews. And this idea of a challenge is that even if this was seen as something positive, it was also seen as something challenging because speech language pathologist said that they sometimes had a hard time to actually meet significant others, to have access to significant others. So this idea of a challenge is this idea that they didn't meet with them frequently. And also, the idea of a challenge is that they were also careful about not overburdening significant others or not causing stress to the significant others, perhaps recognizing the vulnerability that significant others can have as well. So this also contributed to this idea of that positive addition, that is still challenging to to make happen, or that you have to be careful also, when when meeting with significant others.
Lyssa Rome
It sounds like there are some barriers to involving the significant others. And you sort of touched on those briefly—the idea that it's hard to access significant others sometimes. And also then some barriers having to do more with attitudes, like I don't want to overburden this person who's already feeling perhaps burdened. Can you talk a little bit more about some of the barriers and facilitators that you found when talking with SLPs, or when interviewing SLPs for your research? About sort of, what about the barriers and facilitators and about what they consider an ideal kind of practice in this area?
Marie-Christine Hallé
Yeah. In fact, even though it was hard sometimes for them to meet with families, when I asked SLPs the question, what would your ideal practice look like? Let's dream there are no barriers, what would you do? So this, there was this idea that, in an ideal world, they would meet with significant others, probably in their house. Like, to go in with significant others and people with aphasia, to go in their house to support them in a really natural and authentic kind of environment to have conversations. So when they dreamt, that's when what their practice looked like.
Even though the goal of this research project, at this point, was not to focus on or to study barriers and facilitators, because we didn't know what we would find. When I was doing this study, I wanted to know what was speech language pathologists’ experience, but I could still infer some barriers and facilitators. So when I said that SLPs said they had a hard time to meet with significant others, I think there was perhaps this idea of the timing that was maybe difficult.
What was fascinating is that speech therapists working in inpatient rehabilitation were saying that they didn't see significant others that often, because they were probably busy with other therapies, or they were still overwhelmed maybe by what was going on. On the other hand, you had speech language pathologists working in outpatient rehabilitation saying, “Well, now that some time has passed, significant others need some respite. So we don't see them that much anymore.”
So in terms of more specific barriers, there was this idea of the timing. Also, something related to the experience of speech language pathologists—and it's also related to the fact that they didn't see them that often. They didn't see them often, so didn't didn't have that much experience working with them. And some of them said, “I first want to be comfortable working with the person with aphasia, and then when I'll get more comfortable working with the person with aphasia, I can work with significant others as well.” But at the same time, they didn't see them that often.
Also, the impression that speech language pathologists were not necessarily allowed to go and meet patients in their house, it was not part of their the policies, or the institutional rules, where they worked. So this was a barrier also. And the way that speech language pathologist could perceive communication partner training, they say, so sometimes, “If the significant other or the person with aphasia, if they are focused on recovery, or if they are at the beginning of their grieving process, I cannot necessarily introduce them to communication partner training.” Or some SLPs would say, “I don't want to… I can do communication partner training, but as long as I don't add more stress to the dyad.” So there was this idea of a need to have different conditions there. But these conditions are not often altogether present.
Lyssa Rome
It points to kind of gap, I think, between what we know about the value of communication partner training, and then how SLPs are actually able to practice. And I think that you have been working on ways to bridge that gap. And your work on knowledge translation and implementation has sort of led in that direction, it seems to me. Can you say a little bit more about that?
Marie-Christine Hallé
Yeah. So once I had completed my PhD and had this indication of a gap, as I said, that was not the intent, it was more like an exploratory study, but it pointed to a gap, to some indication of a barrier. So afterwards, I went and studied more, I would say, intentionally, the current practices regarding communication partner training.
I have conducted a study that is not published yet. But in the province of Quebec, I have studied using surveys and medical chart reviews. What were the current practices of speech language pathologists regarding communication partner training? And this kind of confirmed this idea of a gap. Because it was a minority of speech language pathologists that would use that very often with people with aphasia. And then what I did was also to explore, intentionally, those barriers and facilitators to use communication partner training by asking speech language pathologists what are those barriers using a framework, using a theoretical framework—the theoretical domains framework—that is constituted of domains that are recognized as influential in one's behavior, like a professional practice. So we know that our professional practice can be influenced by our knowledge, our skills, our environment, the influence of people around us, the beliefs about our own capabilities. So these are some of the domains. So we've asked questions to speech language pathologists regarding those domains.
The idea is if we can identify and kind of classify those barriers in terms of domains, then we can identify and develop knowledge translation strategies that will aim to overcome those specific types of barriers. Because the better you know what is the essence of the problem, what is the essence of the barrier, then you can better adjust.
Lyssa Rome
I wonder when when we're able to overcome some of those barriers that you've identified, and translate the knowledge, what will our treatment look like?
Marie-Christine Hallé
Good question. And, well, if I respond, like in a simplistic manner, since there is a gap, I think that what we would aim for, or what we would expect our practice to look like is to have more frequent use of communication partner training. Or maybe a more… not a systematic offer, because you want to adapt the intervention to the dyad or the people you have in front of you, but still maybe offering it more often, discussing this more often. But I think that once we overcome these barriers, our practice could be different—and not only our practice, as speech language pathologists, but also I think, our practice as a whole team, because we are influenced by our colleagues as well, right?
So I think what the practice may look like, across the continuum of care, is we may have some different messages or discourse, like we've talked about earlier. Like from day one or early on following the stroke, in acute care, we may, as a team—as speech language pathologist, neurologist, nurse, physical therapist—give people the message that what happened to them is a family thing. So if early on, give people the message that they they have the right to be involved, they have the right for some needs to be fulfilled, then this may improve their level of readiness when we introduce this idea of communication partner training,
I also think that what our practice as a team may look like is to make sure that everyone from the interprofessional team is trained and uses communication strategies. So from day one, from acute care, people with aphasia and families will see people using communication strategies. It will not be an SLP thing. So if we want to kind of improve the buy-in or the acceptance regarding the use of communication strategies, if more people use it, it can contribute to this idea that it's acceptable and it's feasible. Because if not, you may think that it's an SLP thing. The SLP is the person able to do it, she will or he will become our translator. But if everyone uses it, then it can even give the message that I'm able to do it. And it can even be kind of empowering. So I think our practice can be different in that manner, as well.
And I think that our practice as speech language pathologists can also be different in the way we introduce what is communication partner training, like developing kind of an argument about how we present this, and how we react when people tell us that they are not interested. The idea is not… we don't want to force people, you know, to receive communication partner training. But if they tell us that they are not interested, that they are focused on recovery, do we just say, “Oh, okay, no, you're not ready.” Or should we have an open discussion, asking them, “What do you fear about communication partner training? How do you understand it? What do you think will happen if we use this training?” So we have access to some of their beliefs that they may be afraid that if we use some communication strategies, that the language will not get better. So if we have access to their belief, we can kind in a more adapted manner respond to this and potentially negotiate with them in a collaborative manner, but to help them take an informed decision about the care. So this is, I think, what the practice could look like.
Lyssa Rome
Yeah, the idea of everyone from the neurologists and the nurses and the whole rehab team using communication partner training is such a dream, I think, for all of us in the field. And I can see how if we had that, that kind of modeling, from very early on, it sort of normalizes using strategies in a way that I think would really change things. So, to wrap up, I'm curious, what would you leave SLPs, the clinicians listening to this? How should we be thinking about including significant others in our work?
Marie-Christine Hallé
I think we should see inclusion of significant others as a necessity, as opposed to a bonus. To feel that this is the basis of our work. To see that our patient is the family unit. I really liked this analogy of a family system as a mobile—you know, that you put above a baby's crib? And the analogy is not from me, it’s from people when I was trained in using family centered care. But you know, if you take a look at the mobile, and that is constituted of different pieces, and if wind blows on one piece of the mobile, the rest of the mobile, the other pieces, will move as well. If you pull or push one piece, the rest will move as well. And the other pieces that will move will influence, again, the other pieces. So you know, the pieces are related. They influence one another. And this is what families are. So if we see them as interrelated, interconnected, and as the whole unit being our patient, I think that can be a way to change our practice.
Lyssa Rome
What a great image. Thank you so much for talking with us, Dr. Marie-Christine Hallé. I really appreciate it.
Marie-Christine Hallé
Thank you so much to you too. It was a pleasure to talk with you.
Lyssa Rome
And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.
References and Resources
SAPPA
https://aphasie.ca/en/projet-sappa/
24 hour virtual Teach-In
Marie-Christine Halle, 24-Hour Virtual Teach-In
Google Scholar
https://scholar.google.com/citations?user=ybWvcBIAAAAJ&hl=fr&oi=ao
Selected References
Shrubsole, K., Power, E., & Hallé, M. C. (2022). Communication partner training with familiar partners of people with aphasia: A systematic review and synthesis of barriers and facilitators to implementation. International Journal of Language & Communication Disorders.https://doi.org/10.1111/1460-6984.12805
Hallé, M. C., Le Dorze, G., & Mingant, A. (2014). Speech–language therapists’ process of including significant others in aphasia rehabilitation. International journal of language & communication disorders, 49(6), 748-760. https://doi.org/10.1111/1460-6984.12108
Hallé, M. C., & Le Dorze, G. (2014). Understanding significant others’ experience of aphasia and rehabilitation following stroke. Disability and Rehabilitation, 36(21), 1774-1782. https://doi.org/10.3109/09638288.2013.870608
Hallé, M. C., & Le Dorze, G. (2013). A Grounded Theory of Caregiving Based on the Experience of the Daughter of a Woman with Aphasia. In Ball, M.J., Müller, N., & Nelson, R.L. (Eds.). Handbook of Qualitative Research in Communication Disorders (p. 271-282). Psychology Press. https://doi.org/10.4324/9780203798874
Hallé, M. C., Duhamel, F., & Le Dorze, G. (2011). The daughter–mother relationship in the presence of aphasia: How daughters view changes over the first year poststroke. Qualitative health research, 21(4), 549-562. https://doi.org/10.1177/1049732310391274
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Manage episode 352235676 series 1285244
Interviewer info
Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.
In this episode, Lyssa Rome interviews Marie-Christine Hallé about her work on including significant others in aphasia rehabilitation, communication partner training, and knowledge translation.
Gap Areas
This episode focuses on Gap Area #4, markedly insufficient training and education of family or carers regarding aphasia and communication strategies; and Gap Area #9, lack of services specifically for family members of people with aphasia across the continuum of care.
Guest info
Dr. Hallé is a lecturer at the University of Quebec at Trois-Rivières and the coordinator of SAPPA, a service for significant others of people with aphasia in Quebec Province, Canada. She completed a PhD in speech language pathology at University of Montreal, and a postdoctoral fellowship in knowledge translation at McGill University. Her work aims to support the inclusion of significant others in aphasia rehabilitation, as well as communication partner training. To promote the uptake of these best practices, she studies professional competency development among speech language pathology students with respect to evidence-based practice and counseling, as well as professional practice changes among clinicians. She is a recipient of the 2022 Tavistock Trust for Aphasia Distinguished Scholar Award.
Listener Take-aways
In today’s episode you will:
- Learn about changes in family relationships due to post-stroke aphasia.
- Understand how speech-language pathologists can support significant others of those with aphasia across the continuum of care.
- Identify barriers and facilitators to implementing communication partner training.
Edited show notes
Lyssa Rome
Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication impairments in my LPAA-focused private practice.
I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature Dr. Marie-Christine Hallé, who was selected as a 2022 Tavistock Trust for Aphasia Distinguished Scholar, USA and Canada. In this episode, we'll be discussing Dr. Hallé’s research on significant others’ experiences of post-stroke aphasia, communication partner training, and knowledge translation.
Dr. Hallé is a lecturer at the University of Quebec at Trois-Rivières and the coordinator of SAPPA, a service for significant others of people with aphasia in Quebec Province, Canada. She completed a PhD in speech language pathology at University of Montreal, and a postdoctoral fellowship in knowledge translation at McGill University. Her work aims to support the inclusion of significant others in aphasia rehabilitation, as well as communication partner training. To promote the uptake of these best practices, she studies professional competency development among speech language pathology students with respect to evidence-based practice and counseling, as well as professional practice changes among clinicians. Marie-Christine Hallé, welcome to the Aphasia Access podcast. It's great to have you here.
Marie-Christine Hallé
Thank you.
Lyssa Rome
I wanted to start, as we often do, with asking you about whether you've had any “aha” moments—significant experiences that were critical in your development as a speech language pathologist?
Marie-Christine Hallé
Great question. In fact, I have an “aha” moment, which is also kind of an “uh-oh” moment—like the perception of a problem.
When I first began to work as a speech language pathologist in rehabilitation, I was very interested and motivated to work with people with aphasia and their significant others as well. I had completed my master’s in speech language pathology, during which I had done a research project. I had read transcripts and analyzed interviews of significant others of people with aphasia. It raised my awareness regarding what significant others can go through—the challenges that they can have when communicating with the person with aphasia.
So I was really motivated to try to make a difference in their lives, to help them to better communicate with one another. But in my clinical practice, I had the feeling that I didn't actually succeed to go there. I was expecting to have these conversations regarding how to help them communicate with one another. But I was not seeing significant others that frequently. Or when I was seeing them, I sometimes had the feeling that the conversation I had with them was—not superficial—but I didn't get to the communication challenge I was expecting that I would get.
So this was kind of my “uh-oh” moment that motivated me to do a PhD. Because at this point, I was like, maybe we don't need to develop a new intervention, targeting significant others, maybe we need to better understand what is the experience of significant others? What are they what they are going through. And also to know about the experiences of speech language therapists as well. And if we better understand both experiences and how they fit with one another, maybe we can better try to actually help them and have the conversation I was expecting to have with them.
Lyssa Rome
That makes a lot of sense. I think a lot of us in clinical work find our ideals don't always match up with the reality. Right? And that specific, “uh-oh”/”aha” moment, brings us to the gap areas that we've been trying to highlight in the podcast. These are the gap areas that were identified in the State of Aphasia report by Nina Simmons-Mackie that was published in 2018. In our conversation in this episode, we're going to be focusing on two gap areas that you've identified here. The first one is Gap Area #4, which is markedly insufficient training and education of family or carers regarding aphasia and communication strategies. And the second is Gap Area #9: lack of services specifically for family members of people with aphasia across the continuum of care. So obviously, those areas are important to you and your work.
I wanted to continue by talking about how that “uh-oh” moment led you into some early papers, and early research that you did, looking at how aphasia changed relationships between people with aphasia and their care partners or significant others, and specifically, between mothers and daughters, where the mothers had post-stroke aphasia. So can you tell us a little bit about that research?
Marie-Christine Hallé
Yes. This research was conducted with four adult daughters of mothers who had aphasia, and we try to look at their relationships. We have identified how adult daughters helped their mothers and the different types of behavior that they could have. We identified how the type of behavior the daughter had was related to how daughters perceived their mothers.
So daughters could perceive their mothers as vulnerable or as having difficulty. They could also perceive her as having abilities. And sometimes when the major was seeing the mother as someone with difficulty or someone vulnerable, daughters would help their mother in a protective manner by doing things. Not at their place, but on their behalf or doing things for them. Like calling to take some appointment with a doctor, or sometimes censoring themselves, like avoiding some conversation. Like a daughter is saying that she had marital issue and she didn't want to worry her mother. So she would avoid having this discussion with her mother.
And the opposite, when daughters perceived more their mothers as having abilities, they would adopt trusting behavior. So encouraging their mothers to do things on their own, even if they may have some difficulty. So a daughter saying that she went to the bank with her mother, but she let her mother go and meet with a bank teller. Even if she saw her mom having some difficulties, finding her words, she let her mother try by herself. Or whenever they were using some communication strategies, recognizing that the mother had something to say. They were recognizing their competency. So that was a way of trusting her.
So we we kind of saw different type of relational scenarios, sometimes the mother could react by being satisfied, or sometimes being dissatisfied by the daughter's reaction. But we also identified how aphasia seem to complexify the adjustment to the relationship, because sometimes daughters seemed to avoid communication to solve their problem.
I have an example in mind of a daughter, who in the first place, kind of trusted her mother. She was living with her. She trusted her mother by going by herself to run some errands. So she left her mother alone in her house. So the daughter could go by herself go run some errands. But when she came back, she saw her mother was worried or crying. So she told herself—the daughter, she didn't speak about it with her mom, but she told herself, “I left my mother home, when I came back, she felt worried, I shouldn't do that again. Next time, I need to go to the grocery I’ll wait for my mom to be somewhere else at an appointment. So I won't leave her alone.” So instead of having an open discussion with the mother, asking, “What was going on? Are you worried? What could we do next time?”, she decided by herself not to solve this problem through communication. So it shows how aphasia can make this adjustment more complex, because you need to adjust to life with post-stroke aphasia, you may need to take some new roles and responsibilities, but because of aphasia, you may kind of avoid the use of communication to actually solve this problem.
Lyssa Rome
It sounds like some of those trusting behaviors really had to do with recognizing the underlying competency of the person with aphasia, these mothers with aphasia, and maybe also their abilities. I'm wondering how, recognizing that and sort of seeing these different kinds of perceptions that the daughters had about their mothers and the mothers had about their daughters and their level of satisfaction or dissatisfaction—how did that influence your own focus in your work on how speech language pathologists involve significant others in aphasia care?
Marie-Christine Hallé
I think it had the influence about how important it can be for us as speech language pathologists to involve significant others to better communicate with the person with aphasia, but to help them reveal and recognize their competency through communication. So this was kind of the the influence it had. How we can see that through communication, or that the competency that you can reveal through communication could then have influence on the relationship and domains other than communication.
It can even lead to a virtuous cycle, where you communicate with one another, you see the other’s competency during communication, but that can also foster some trusting behavior that can contribute to the person's autonomy. And at the same time as a caregiver, potentially, eventually less sense of burden, because the person can do things on her own. And the more the person does things on her own, the more you can see her as competent, as having abilities. That can nourish those trusting behaviors. So it's how we can connect what happens in communication, and what happens in the relationship outside communication as well.
Lyssa Rome
That makes a lot of sense to me. And I think that speaks to how central communication is for and how being successful in communication can have really broad impacts in the rest of someone's life and in their relationships and their sense of self as well. You've written about these experiences that significant others have of aphasia, and how that relates to their relationship with the person with aphasia in their life, and also their relationships with rehabilitation services. And I'm curious about if you could say a little bit more about what you've learned in those areas as you continue to study significant others and their experiences of aphasia?
Marie-Christine Hallé
Yeah, so by studying their experience of rehabilitation, what I learned is how significant others, when they get to rehabilitation after acute care, they get there in a state of being centered on the person with aphasia. So following the hospital, they may have feared to lose the person. They were there day in, day out at the hospital to take care of her, sometimes to speak on their behalf, making sure she receives good services. And then when they arrive in rehabilitation, they are in this state of being focused on the person with aphasia. So when they meet with health professionals, when they talk with health professionals, they talk about the person with aphasia. At the same time, health professionals respond by also being focused on the person with aphasia. So this kind of put significant others in the state of seeing rehabilitation as being about the person with aphasia, not necessarily about themselves. So this even influences their expectation of rehabilitation. If, for them, rehabilitation is about the person with aphasia, they will be satisfied by rehabilitation services as long as it fulfills their needs related to their caregiver role.
But what was really a revelation for me was also that what it can involve is that a significant other could speak of rehabilitation in really positive terms, saying, “Oh, that was a five star rehabilitation.” So they are very satisfied. But at the same time, they could also talk about struggling in their everyday life, needing some respite or having some challenges, maybe communicating with one another. So this is something else that I learned—how there was this possible coexistence between being satisfied with the services, but at the same time, going through some difficult stuff, and all that, because the rehabilitation was associated with the person with aphasia.
Lyssa Rome
Right, so they're not expecting or maybe even getting the message early on that aphasia rehabilitation is about more than just the person with aphasia, and that they also could benefit from, say, speech language pathology services, is that is that right? Is that getting it?
Marie-Christine Hallé
Yeah, absolutely.
Lyssa Rome
Where does that bring us in terms of what clinicians should know about how we can perhaps do a better job of bringing significant others in—I don't know, earlier on or in more meaningful ways—so that they feel part of the rehabilitation process.
Marie-Christine Hallé
So I feel there's something about the message we tell them. Yes, they can be centered or focused on the person with aphasia, but we have to think about what is the message we tell them, as well. So should we maybe be more explicit in telling them that aphasia is a family thing? That aphasia, yes, it happens to one person, but it affects all people surrounding the person. To let them know that the rehabilitation process can be about them as well. So I think there's something about these kinds of messages we tell them.
We also found that sometimes it could not be comfortable for them to think about them or sometimes some of their needs could be more kind of implicit at certain points, like their need to have a better relationship or better communication with the person maybe more implicit. So those more implicit needs, maybe we can more explicitly bring them or introduce them to significant others, so that they can feel that it's legitimate to feel the those kinds of things.
We can open discussion by saying we know how for some people communication can be sometimes difficult. Or sometimes you can understand one another but sometimes the topics you have in conversation are not the same topics as before. Or sometimes you can feel frustration we've heard this from other significant others. What about you? So to make it to make it okay to feel this or to help them maybe identify those needs that may be more implicit at certain points. So to open the discussion, make it okay, tell them like very clearly that it can be about them, that we can be here for them as a family unit.
Lyssa Rome
What you're saying rings so true to me, and the importance of letting significant others know that their experience of aphasia is also important and also worth addressing. You also then studied, I think, maybe more generally, but maybe you can tell us more about what else significant others need from the rehabilitation process?
Marie-Christine Hallé
Well, by studying their experience of rehabilitation, and understanding that they were focused or centered on the person with aphasia, it helped to identify a variety of needs that significant others can have. Something that can be helpful is how we can associate significant others’ different needs in relation to the different roles that they can have.
So when I said that significant others associate rehabilitation with the person with aphasia, or maybe themselves as caregivers, so there have they have needs as caregivers—the need to have information, the need to have tools to help the person with aphasia, the need to have hope that things are going to be okay, or the need to be part of the rehabilitation team, the need to feel that they are considered as a partner in this rehabilitation experience. Those can be some things we have identified related to the caregiver role.
But they also have other needs. Like I said earlier, when I talked about communication, so they can have the need to have a better communication with the person with aphasia, the need to have a better relationship with the person with aphasia, and this is more related to themselves being, well,l significant others or are people with an affective link with someone with aphasia. So, spouse, daughter, friend, and in their kind of role, they have their communication needs and needs to have better relationships. And when we think of significant others as patients themselves, we also identify that they have the need for support, the need to be supported, and the need for respite. So we can see this variety of needs.
Some of these were previously documented before my work. But this understanding of the rehabilitation process kind of helped to classify significant others with their roles. When you think of an iceberg, some needs are kind of outside of the water, or the obvious one that you see, those related to their caregiver role. And some other needs during their rehabilitation process, maybe when I say implicit, those that are hiding. Because they don't talk about those needs, or because they are still not clear to them to formulate them as needs so that they can ask for help.
Lyssa Rome
Can you say a little bit more about what some of those under the surface needs were that you were able to identify in these qualitative studies that you were doing?
Marie-Christine Hallé
Yes. So I remember a spouse, when she was talking about communication, she didn't say clearly or explicitly, “I want to have better communication with my husband.” But she said, “evenings,” I don't know how to say not “evenings are long, but that are less busy as before, like, not boring, but like the time is different now that their the way we spend our time together is different because we don't talk much to one another.” So this is also what I mean by implicit—it’s that there was this feeling of discomfort regarding communication, but it's not necessarily formulated as, “I want to better communicate.” More at this point, it can be kind of a discomfort.
Lyssa Rome
Yeah, and it sounds like also maybe a sense of loss, right? We used to have this evening that was full of conversation, and now we don't have that anymore. Thinking about those needs both the explicit ones and the implicit needs, what role does communication partner training play in how we as speech language pathologists can support the significant others of people with aphasia?
Marie-Christine Hallé
I think it's by helping them to keep on using communication to maintain their relationship. You spoke earlier about the idea of loss—so, that the loss of the way communication used to be or the way the relationship was before. So to keep on communicating with one another, and to use communication to solve problems. Like when I spoke earlier of how aphasia can make it more difficult to adjust to life with aphasia. So, if we train communication partners to use different strategies to keep on communicating with one another, to find still enjoyable time to communicate, they can use communication more frequently for the pleasure of communicating, and also for the use of solving some problems they can have in relation to the new role and responsibilities they can have. To help them to keep on having frank and honest communication, like authentic communication. When they keep on talking about what they used to talk about, even if sometimes some subjects may be more complex. But how can we still get to some authentic, significant topics that they would like to talk about. Even perhaps, how it can help to have more balanced relationships. So because we talked about the needs significant others can have as caregivers, but they are not only caregivers. So if they don't want to feel only as caregivers—and the same thing for the person with aphasia, if the person with aphasia wants to feel that person as still a spouse, still a daughter, can the communication have something authentic, that still feels like their previous relationship? So not just as someone helping someone else. That's what I mean about this idea of a more balanced relationship.
Lyssa Rome
And I think that that really underlines the importance of communication partner training to the Life Participation Approach, right? Because if communication partner training is allowing people to fulfill other roles, other than just being a care partner, but also still being a spouse, still being a daughter, or a sibling, or in some other role—the original role—with his change of aphasia, then in order to support that, we as speech pathologists need to be able to really help people learn better communication strategies.
Marie-Christine Hallé
Yes, and when you were speaking, I was also thinking about, as you said, the these other roles they can have. You know, earlier I've talked about their need for respite, the need to be supported, and how we can even help them to have support from the person with aphasia. In this idea of balanced and authentic communication and relationship, it can be interdependent, right? So the spouse or significant other can help the person with aphasia, but if they want to stilll have the relationship they used to have when you can communicate and have the person with aphasia still play a role of support, that can also be a way to fulfill their needs. But yes, to make this connection with this Life Participation Approach, where both members of the dyad can play their the different roles that they can play in their social life.
Lyssa Rome
Yeah. Given the importance of that, it seems like that leads very clearly into some of your other work that involves looking at how speech language pathologists include significant others and how SLPs think about their work involving significant others. You did some really interesting research on that question. One of the things that really stood out to me in your paper was this idea that SLPs thought about working with significant others, as—and this is a quote from the paper—“a challenging bonus to the fundamental patient-centered approach.” Can you explain a little bit more about that?
Marie-Christine Hallé
Yes. So this idea of the “challenging bonus” is while analyzing the data and the interviews, there was this dimension of bonus, like of a positive addition. When speech language pathologists were speaking of their work with significant others, they saw this as a positive addition to their fundamental approach. They were explaining that their focus was on the person with aphasia. That was the focus of their work. That was the focus of their intervention. And if they could meet with significant others, then that was like the cherry on top. The basis was working with the patient with aphasia. And the positive addition was, “Oh, well, if I can meet with the significant other, then it's even better than they can provide me some valuable information about the person with aphasia, then I can better adapt or tailor some intervention to the person with aphasia because I have more information from the significant other about the person with aphasia.”
So this is the expression challenging bonus, it’s how I identify the bonus part in the interviews. And this idea of a challenge is that even if this was seen as something positive, it was also seen as something challenging because speech language pathologist said that they sometimes had a hard time to actually meet significant others, to have access to significant others. So this idea of a challenge is this idea that they didn't meet with them frequently. And also, the idea of a challenge is that they were also careful about not overburdening significant others or not causing stress to the significant others, perhaps recognizing the vulnerability that significant others can have as well. So this also contributed to this idea of that positive addition, that is still challenging to to make happen, or that you have to be careful also, when when meeting with significant others.
Lyssa Rome
It sounds like there are some barriers to involving the significant others. And you sort of touched on those briefly—the idea that it's hard to access significant others sometimes. And also then some barriers having to do more with attitudes, like I don't want to overburden this person who's already feeling perhaps burdened. Can you talk a little bit more about some of the barriers and facilitators that you found when talking with SLPs, or when interviewing SLPs for your research? About sort of, what about the barriers and facilitators and about what they consider an ideal kind of practice in this area?
Marie-Christine Hallé
Yeah. In fact, even though it was hard sometimes for them to meet with families, when I asked SLPs the question, what would your ideal practice look like? Let's dream there are no barriers, what would you do? So this, there was this idea that, in an ideal world, they would meet with significant others, probably in their house. Like, to go in with significant others and people with aphasia, to go in their house to support them in a really natural and authentic kind of environment to have conversations. So when they dreamt, that's when what their practice looked like.
Even though the goal of this research project, at this point, was not to focus on or to study barriers and facilitators, because we didn't know what we would find. When I was doing this study, I wanted to know what was speech language pathologists’ experience, but I could still infer some barriers and facilitators. So when I said that SLPs said they had a hard time to meet with significant others, I think there was perhaps this idea of the timing that was maybe difficult.
What was fascinating is that speech therapists working in inpatient rehabilitation were saying that they didn't see significant others that often, because they were probably busy with other therapies, or they were still overwhelmed maybe by what was going on. On the other hand, you had speech language pathologists working in outpatient rehabilitation saying, “Well, now that some time has passed, significant others need some respite. So we don't see them that much anymore.”
So in terms of more specific barriers, there was this idea of the timing. Also, something related to the experience of speech language pathologists—and it's also related to the fact that they didn't see them that often. They didn't see them often, so didn't didn't have that much experience working with them. And some of them said, “I first want to be comfortable working with the person with aphasia, and then when I'll get more comfortable working with the person with aphasia, I can work with significant others as well.” But at the same time, they didn't see them that often.
Also, the impression that speech language pathologists were not necessarily allowed to go and meet patients in their house, it was not part of their the policies, or the institutional rules, where they worked. So this was a barrier also. And the way that speech language pathologist could perceive communication partner training, they say, so sometimes, “If the significant other or the person with aphasia, if they are focused on recovery, or if they are at the beginning of their grieving process, I cannot necessarily introduce them to communication partner training.” Or some SLPs would say, “I don't want to… I can do communication partner training, but as long as I don't add more stress to the dyad.” So there was this idea of a need to have different conditions there. But these conditions are not often altogether present.
Lyssa Rome
It points to kind of gap, I think, between what we know about the value of communication partner training, and then how SLPs are actually able to practice. And I think that you have been working on ways to bridge that gap. And your work on knowledge translation and implementation has sort of led in that direction, it seems to me. Can you say a little bit more about that?
Marie-Christine Hallé
Yeah. So once I had completed my PhD and had this indication of a gap, as I said, that was not the intent, it was more like an exploratory study, but it pointed to a gap, to some indication of a barrier. So afterwards, I went and studied more, I would say, intentionally, the current practices regarding communication partner training.
I have conducted a study that is not published yet. But in the province of Quebec, I have studied using surveys and medical chart reviews. What were the current practices of speech language pathologists regarding communication partner training? And this kind of confirmed this idea of a gap. Because it was a minority of speech language pathologists that would use that very often with people with aphasia. And then what I did was also to explore, intentionally, those barriers and facilitators to use communication partner training by asking speech language pathologists what are those barriers using a framework, using a theoretical framework—the theoretical domains framework—that is constituted of domains that are recognized as influential in one's behavior, like a professional practice. So we know that our professional practice can be influenced by our knowledge, our skills, our environment, the influence of people around us, the beliefs about our own capabilities. So these are some of the domains. So we've asked questions to speech language pathologists regarding those domains.
The idea is if we can identify and kind of classify those barriers in terms of domains, then we can identify and develop knowledge translation strategies that will aim to overcome those specific types of barriers. Because the better you know what is the essence of the problem, what is the essence of the barrier, then you can better adjust.
Lyssa Rome
I wonder when when we're able to overcome some of those barriers that you've identified, and translate the knowledge, what will our treatment look like?
Marie-Christine Hallé
Good question. And, well, if I respond, like in a simplistic manner, since there is a gap, I think that what we would aim for, or what we would expect our practice to look like is to have more frequent use of communication partner training. Or maybe a more… not a systematic offer, because you want to adapt the intervention to the dyad or the people you have in front of you, but still maybe offering it more often, discussing this more often. But I think that once we overcome these barriers, our practice could be different—and not only our practice, as speech language pathologists, but also I think, our practice as a whole team, because we are influenced by our colleagues as well, right?
So I think what the practice may look like, across the continuum of care, is we may have some different messages or discourse, like we've talked about earlier. Like from day one or early on following the stroke, in acute care, we may, as a team—as speech language pathologist, neurologist, nurse, physical therapist—give people the message that what happened to them is a family thing. So if early on, give people the message that they they have the right to be involved, they have the right for some needs to be fulfilled, then this may improve their level of readiness when we introduce this idea of communication partner training,
I also think that what our practice as a team may look like is to make sure that everyone from the interprofessional team is trained and uses communication strategies. So from day one, from acute care, people with aphasia and families will see people using communication strategies. It will not be an SLP thing. So if we want to kind of improve the buy-in or the acceptance regarding the use of communication strategies, if more people use it, it can contribute to this idea that it's acceptable and it's feasible. Because if not, you may think that it's an SLP thing. The SLP is the person able to do it, she will or he will become our translator. But if everyone uses it, then it can even give the message that I'm able to do it. And it can even be kind of empowering. So I think our practice can be different in that manner, as well.
And I think that our practice as speech language pathologists can also be different in the way we introduce what is communication partner training, like developing kind of an argument about how we present this, and how we react when people tell us that they are not interested. The idea is not… we don't want to force people, you know, to receive communication partner training. But if they tell us that they are not interested, that they are focused on recovery, do we just say, “Oh, okay, no, you're not ready.” Or should we have an open discussion, asking them, “What do you fear about communication partner training? How do you understand it? What do you think will happen if we use this training?” So we have access to some of their beliefs that they may be afraid that if we use some communication strategies, that the language will not get better. So if we have access to their belief, we can kind in a more adapted manner respond to this and potentially negotiate with them in a collaborative manner, but to help them take an informed decision about the care. So this is, I think, what the practice could look like.
Lyssa Rome
Yeah, the idea of everyone from the neurologists and the nurses and the whole rehab team using communication partner training is such a dream, I think, for all of us in the field. And I can see how if we had that, that kind of modeling, from very early on, it sort of normalizes using strategies in a way that I think would really change things. So, to wrap up, I'm curious, what would you leave SLPs, the clinicians listening to this? How should we be thinking about including significant others in our work?
Marie-Christine Hallé
I think we should see inclusion of significant others as a necessity, as opposed to a bonus. To feel that this is the basis of our work. To see that our patient is the family unit. I really liked this analogy of a family system as a mobile—you know, that you put above a baby's crib? And the analogy is not from me, it’s from people when I was trained in using family centered care. But you know, if you take a look at the mobile, and that is constituted of different pieces, and if wind blows on one piece of the mobile, the rest of the mobile, the other pieces, will move as well. If you pull or push one piece, the rest will move as well. And the other pieces that will move will influence, again, the other pieces. So you know, the pieces are related. They influence one another. And this is what families are. So if we see them as interrelated, interconnected, and as the whole unit being our patient, I think that can be a way to change our practice.
Lyssa Rome
What a great image. Thank you so much for talking with us, Dr. Marie-Christine Hallé. I really appreciate it.
Marie-Christine Hallé
Thank you so much to you too. It was a pleasure to talk with you.
Lyssa Rome
And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.
References and Resources
SAPPA
https://aphasie.ca/en/projet-sappa/
24 hour virtual Teach-In
Marie-Christine Halle, 24-Hour Virtual Teach-In
Google Scholar
https://scholar.google.com/citations?user=ybWvcBIAAAAJ&hl=fr&oi=ao
Selected References
Shrubsole, K., Power, E., & Hallé, M. C. (2022). Communication partner training with familiar partners of people with aphasia: A systematic review and synthesis of barriers and facilitators to implementation. International Journal of Language & Communication Disorders.https://doi.org/10.1111/1460-6984.12805
Hallé, M. C., Le Dorze, G., & Mingant, A. (2014). Speech–language therapists’ process of including significant others in aphasia rehabilitation. International journal of language & communication disorders, 49(6), 748-760. https://doi.org/10.1111/1460-6984.12108
Hallé, M. C., & Le Dorze, G. (2014). Understanding significant others’ experience of aphasia and rehabilitation following stroke. Disability and Rehabilitation, 36(21), 1774-1782. https://doi.org/10.3109/09638288.2013.870608
Hallé, M. C., & Le Dorze, G. (2013). A Grounded Theory of Caregiving Based on the Experience of the Daughter of a Woman with Aphasia. In Ball, M.J., Müller, N., & Nelson, R.L. (Eds.). Handbook of Qualitative Research in Communication Disorders (p. 271-282). Psychology Press. https://doi.org/10.4324/9780203798874
Hallé, M. C., Duhamel, F., & Le Dorze, G. (2011). The daughter–mother relationship in the presence of aphasia: How daughters view changes over the first year poststroke. Qualitative health research, 21(4), 549-562. https://doi.org/10.1177/1049732310391274
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