Episode 141: Taking Charge After Stroke: Self-Determination and Recovery with Vivian Fu

Episode: 140

Taking Charge After Stroke:

Self-Determination and Recovery with Vivian Fu

In this episode you will discover:

● The Conversation Is the Intervention — A structured, facilitated conversation that centers a person's identity, hopes, and vision for their best day produces measurable improvements in quality of life and independence a year after stroke. Connection isn't soft — it's evidence-based.

● Reframe the Expert in the Room — Take Charge asks clinicians to resist offering advice, validation, or direction — and to trust that the person with stroke already holds the wisdom they need. The hardest part of the facilitator role is staying out of the way.

● Self-Determination Is Not a Luxury — When people with stroke are supported to set their own direction, outcomes improve, costs decrease, and the effects last for years. Building systems that protect that autonomy isn't idealistic — it's what the data demands.

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong from Central Michigan University and a member of the Aphasia Access Podcast Working Group, a community dedicated to supporting better aphasia care.

Today I'm speaking with Dr. Vivian Fu, a stroke neurologist living and working in Kelowna, British Columbia, the unceded territories of the Syilx / Okanagan people. Vivian trained in Aotearoa New Zealand, where she completed her PhD running the Taking Charge After Stroke trial. Take Charge showed that people with stroke who were supported to follow their own self-determination had much better quality of life and independence a year after their stroke. The second Take Charge RCT showed that two sessions about six weeks apart produce better outcomes than one session. Vivian strives to embed the Take Charge philosophy in her daily practice, and is focused on improving access to high quality stroke care for rural, regional, and underrepresented populations.

I have been looking forward to this conversation. What drew me to Take Charge was how it reframes the question entirely — from what does the clinician do for this person to what does this person want for their own life. That shift is deceptively simple, and as you'll hear, the evidence behind it is anything but.

Let's get into it.

Katie Strong: Welcome, Vivian.

Vivian Fu: Thank you so much for having me, Katie. I'd like to start off with my Pepeha. This is an introduction in Te Reo Māori, which is the indigenous language of the people of Aotearoa New Zealand, and I'll just translate each line.

Nō Hong Kong ōku tīpuna. My ancestors come from Hong Kong.

I tipu ake au ki Aotearoa. I grew up in Aotearoa, New Zealand.

E noho ana au ki Ki-Low-Na. I live in Kelowna, British Columbia.

Ko tēnei taku mihi ki ngā tāngata whenua o te rohe nei. I like to pay my deepest respects to the first peoples of this land. I live on the unceded territories of the Syilx and Okanagan peoples.

Ko tēnei taku mihi ki ngā maunga, ki ngā awa, ki ngā roto, ki ngā Papatuānuku, o te rohe nei. I'd like to pay my deepest respects to the mountains, rivers, and the lakes, and to Mother Earth. All these important landmarks that have been here for millennia.

Nō reira, tēna koutou, tēna koutou, tēna koutou katoa. Therefore, hello, hello, hello, Ko Vivian Fu tōku ingoa. Lovely to be here.

Katie Strong: Well, I'm so glad you're here. And I wanted to start off today asking about the Take Charge program that you've been working with, and talk to me about how that began. What was the origin of that?

Vivian Fu: Sure, so really this work began in probably the late 90s early 2000s when clinicians in Aotearoa New Zealand realized that there were different outcomes for people who were Māori compared with non-Māori, and I guess an important point to illustrate is that in Aotearoa society we view things in a very bicultural lens, and by that I mean Tangata Whenua, who are the people of the land, so indigenous people of the Māori and Tangata Tiriti, so everyone else are people of the treaty. It doesn't really matter where you come from, but you are a person of the treaty if you live in Aotearoa, and so it's a bicultural lens, and so we always look at things in that way, and that's how our kind of entire society is grounded upon that. And so when we look at health outcomes, what we could see back then, and unfortunately what we, in a way, still see now is that Māori were experiencing a stroke at about 20 years younger than non-Māori, and they were more likely to die from their stroke, and also more likely to be severely disabled. And so there was a difference in life expectancy, a difference in overall rehabilitation access, difference in overall outcomes, and so it started off with Professor Matire Harwood's work. She is Tangata Whenua, and in her PhD, she was looking at why there were these differences in outcomes and wanting to address them. And so that started off with the Māori and Pacific Stroke Study, which was essentially conducted in just Māori and Pacific people in Aotearoa, New Zealand, out of many different centers around the country. It was a four arm study.. It was a randomized control trial, and it looked at a conversation, which was labeled as the "Take Charge" session, but it was, it was really a connection and a conversation versus a professionally made DVD from the New Zealand Stroke Foundation about people's experiences and stories after stroke. And then the fourth arm of the trial was getting both of those interventions, and there was a control group. So there were three active groups in one control group. And what the researchers basically found was that anybody who had received this session of discussion and connection did much better a year after stroke in terms of quality of life, independence, and caregiver strain. And so that was the first sort of indication that there was something in that conversation that was really important. Unfortunately, it didn't really take off in terms of being able to be implemented, and so then Dr. Harry McNaughton, who was Dr. Harwood's supervisor wrote multiple grants and tried to get this session into much more of a bigger trial with some some type of implementation, and that's where I came along and we essentially did two things. We operationalized the intervention into something that had a bit of a framework, so with a bit of a booklet and a bit of a structure to follow. Really looking into what was it about that conversation that was so powerful and made such a difference to people, and tried to put those things into practice. Then, secondly, to conduct a second trial in New Zealand out of seven centers for people with stroke who were non-Māori and non-Pacific, because the struggle that we came across was that it was only shown to be effective in a small group of people, but not in everybody, and so we had to do things backwards. And so that was really where it all began, from these principles of self-determination, so Tino Rangatiratanga, which is a really important principle in Te Ao Māori, and in the world of Māori, but also knowing that Māori and a lot of indigenous peoples, we think of health as this concept called Te Whare Tapa Whā, for example, which is the house with four walls. So a person is never just their body and their physical health, there are other walls that keep the house upright. So mental health, spiritual health, and family health, whānau is so important, and feeling as though you have strong foundations in where you belong is also really important. So it's that really holistic look at health of an individual and how we can address all of those things in an intervention is really where it all came from.

Katie Strong: Thank you for sharing. I appreciate the backstory, and also just the idea of what you're thinking about from a holistic health standpoint. I know our listeners are probably curious, some of them might not have heard about Take Charge before, so this is the first time of them hearing about this, and so I was hoping, Vivian, you could give us an overview of what the intervention is, and then maybe walk us through what a session actually looks like in practice.

Vivian Fu: Yeah, absolutely. So I'll talk you through the session in the way that it was done in the larger Take Charge trial. So this was done in 400 non-Māori, non-Pacific people with stroke, and our trial there had three arms. So there was a control group, there was a group that received just one session, and then there was a group that received two sessions six weeks apart roughly. The sessions were provided by a trained facilitator, and they were timed roughly somewhere between three to 18 weeks after stroke. So quite a large window, really, depending on when the person with stroke was ready to receive it. So the short version of what it looks like is it's based off the booklet and it's done face to face. It's a conversation and the facilitator is trained at the beginning to really try and establish a relationship…to build a relationship. There's a concept in Te Ao Māori called Whakawhanaungatanga, which is really sort of seeking another person's identity, recognizing who they are as a person, and trying to build connections. And so I guess in English, we think of that as building rapport, building trust. And so it in our trial was done face to face. We have also looked at ways of doing this via telehealth as well, which is, you can imagine, is a little bit different. But that step is really important, and we knew that it was important also in the initial Māori and Pacific trial, because the facilitators who were trained were actually ethnicity matched. So that's something where I think it came quite naturally in that trial, but in the second trial we really wanted to ensure that a relationship was built, and then there are three pages, initial pages in the booklet that look at different things. So the first page is looking at how the person has been affected by the stroke, and then asking them to think about actually who they really are as a person. It's a very simple concept, and a very sort of simple question, but for many people that's the first time they've really been asked that and have had to think about that. So anything that comes to mind that they can relate to, you know, who they are. An individual, and what it is that they love, so for example, for me, I would say, "I'm a mum, and I'm, I'm a stroke neurologist, I am a painter, I'm a poet, I'm someone who loves going for walks in hikes," and, you know, so those kinds of things, and it, and it kind of really builds on on that person's identity and who they are in the world. And so that's that sort of page one. It's really about establishing identity and sense of self.

And then the second page is talking then about my hopes and fears. And that might be a tricky one, really, for a lot of people to start talking about and thinking about. They may not want to express that, they may not have been asked that. Sometimes it brings out a lot of emotion, and that's why that initial beginning part of establishing trust and in a kind of a psychological safety space is really important. And then the third page is imagining or envisioning what my best day looks like. And you can be as wild and fantastical about that as you like. When we train our facilitators, we asked them to do these exercises as well themselves, so they can get a really good sense of what that's like, and I had a lovely training session with community health workers from Tanaha First Nation in Cranbrook, BC, and one of one of the attendees in the group said she'd love to have breakfast with a Sasquatch, and so that was absolutely, you know, it was so culturally relevant, so important.

Katie Strong: That makes my Pacific Northwest roots just smile there!

Vivian Fu: Exactly! Just so unique to that individual and to where they are in the world. And it's not something you can, you can pluck out of a textbook or pluck out of anything, right. It's where they are. I love that activity. It's quite magical what comes out. And then after those three pages are done, then there are some pages that are specifically related to goal setting, which may or may not be relevant to the person in front of you, things like a physical page, emotional, social, financial, health management type pages. And that really is a way to think about or encourage the person to think about, or we know what are the things that do matter to you, and and what are the things you would like to achieve in the long run, and what are some ways you might be able to break that down into achievable steps that you would personally want to do. But the session in practice can look like anything out of that. It can look from a person at session one being completely clammed up about not wanting to dig deep or not not being ready to engage in that. Or just kind of being, you know, keeping it all to themselves, and thinking about it, and ruminating about it, and then session two, looking very different after they've had that six weeks to think about it themselves. It can look like blank pages, or it could look like a person coming up with all sorts of brilliant ideas. Hopefully, you know, we always encourage if they can write the person with stroke as the one who is writing in the notebook. They keep it. They stick it on their fridge. They do whatever they like with it. They write in it in their own time, but it's completely fine to have blank pages. It's completely fine to have nothing come out of that conversation, nothing verbal, but it's just a space to an invitation to dig deep, and if there's something to say to feel heard. And I guess there was another question. I think that's quite important with regards to what the facilitator is doing, what are they not doing, and the facilitator is trained specifically to listen and ask questions and reflect the ideas that are being expressed by the person with stroke, but what they're not doing is they're not offering any advice or suggestions or pathways forward or how abouts or what abouts. They are not, and this is probably the hardest part. They're not passing any judgment, and that includes good judgment. So, by saying something like, "oh, that sounds like a really good idea", which seems like a really normal response from most people, it kind of implies that there are other ideas that are less good. Or the person with stroke might feel as though they are needing to have that kind of external validation, that external approval, and, and what we don't want is to for them to feel like they're doing this or saying this or thinking these things for the facilitator. We want them to think about it for themselves. And so all we encourage people to respond, is "oh, so you'd like to ride your bike, that's really interesting. How, how do you think you'll, you'll go about doing that?" You know, it's, it's much more neutral, but reflective way of speaking and listening, I guess.

Katie Strong: I am curious, how long is the training, or you know, what kinds of.. what we didn't talk about this, but I know people are going to want to know. So, what does it take to be trained?

Vivian Fu: This is quite funny. This is a thing that sort of been on my mind ever since we've started implementation around the world, and I have this ultimate goal of operate like actually making the training have some type of qualification and fidelity, and some structure. There is structure, but it's essentially myself or Harry doing a Zoom with people, and it takes maybe say four hours. But ideally, what we'd love to do is to have sort of recorded videos, and then we'd have live sessions, and then we'd have assessments, and then you get a certificate at the end. I have neither the budget or the…

Katie Strong: There's always the next step, for sure.

Vivian Fu: I'd love to be for people to be able to say, "Oh, I'm Take Charge trained" and for them to be able to like "Look, I've got this qualification, I'm Take Charge trained, I know how to do this," and especially for if we were thinking about doing it in more clinical trial settings, I think that's really important, but also, you know, for people, you know, to have on their CV, if they're moving between jobs and things, I think it's so useful. But yeah, basically people get in touch with myself or Harry and say, "Hi, we'd like to be trained, can you fit us in?" And we just do it for free.

Katie Strong: Lovely, I love it. And the other question I had as you were talking was how long is a typical session or or is there is there length?

Vivian Fu: So in the trial what our facilitators did was they because it was face to face and they had to drive between people's houses, they booked in the session, usually at 10:30 in the morning, and then another session, I think, if I remember correctly, either maybe it was 1:30 in the afternoon. And so you can probably surmise that for people with stroke, usually the 10:30 slot is the most popular. And you know, some people would would prefer to wake up earlier and be ready earlier, so they might ask for something like 9 o'clock and then they might usually go for about an hour and a half to two hours if it's a good going session, and they're really digging deep, and there's a lot to say. And often you know that first half an hour is, "Here's a cup of tea and a biscuit. Let's get to know each other. Tell me all about what happened with your stroke." That kind of stuff, so that listening and connecting stuff actually takes takes a while to establish, and I think people just allowed for that time. Then they'd do a second session in the afternoon again. There are lots of things, you know, cognitive problems, fatigue is a big one. So, if people felt like they couldn't keep going, the facilitator would say , "That's totally fine, we'll book in for, you know, do the rest of this another time, is that okay?" It was fine to really just, you can truncate it and break it up as much as the person really wants.

Katie Strong: Thank you. I appreciate the extra information. You had a recent publication in 2025 with some colleagues that looked at this work from a qualitative lens. You came up with some themes about doing things my way, coming to my own wisdom, and they're just so deeply related to identity, and what struck me was the contrast participants drew between Take Charge care and standard care, where they described being put in a box receiving scripted advice that had really nothing to do with who they were as a person. And when someone gets to tell the story of who they are to a genuinely good listener, something shifts. I was just curious, if you could think about what you think is happening there, or what you found in your study.

Vivian Fu: Well, I think for the most part, as a, you know, as a clinician, if we think about from the moment the person has a stroke, they disempowered from that very moment. Something happens where they just aren't themselves, and they are brought into a merge. A bunch of things happen to them that they can't really even speak up about. You know, they're popped in a scanner. They might get thrombolised, you know, all these things are happening. And the person doesn't really know what's going on. There are a lot of important qualitative studies that have been done, looking at that element of feeling disempowered, and what somebody in New Zealand study described as feeling gut-wrenchingly emotional. You know, experiences that that aren't heard and aren't ever expressed to to anyone in the healthcare side and aren't dealt with, and so, if you think about that, just that trauma of having a stroke and then going through all of that stuff, and you know, ending up in a bed somewhere on a ward with strangers on the other side of a curtain, and it's really pretty traumatic. And so I think what was powerful with Take Charge was it's an it's an opportunity for someone to finally tell their story and feel heard and for all that stuff to just come out. And a lot of the time you know people might say, "Oh, well, you could talk to your family, you can talk to your kids, or, you know, whatever. Once you get home" but actually, a lot of people don't feel like talking to those who are closest to them about how much it affected them, and there is still an element of stigma. There's still an element of, "Oh, you know, you look great physically, you to someone we know having had a big health scare, and then kind of coming back into that. But there's there's a real dissonance between what is going on inside a person and and how other people are reacting to them coming back into "normal spaces". And so I think the ability to tell your story from the very get go. You know, all of the messiness of it. All the things that went wrong, and then to have somebody listen to that really gives meaning to it and makes it real, but it also helps that person really reestablish their sense of power to regain some power from that that they had lost. And there's a lot of power in story, and I think the kind of, you know, lovely thing about it is that sort of all indigenous cultures sort of be like, you know, First Nations, Māori, Gaelic, a lot of cultures really put a lot of value in the power of storytelling. And that is how historically things were really passed down, and so I think it's through that ability to be able to feel heard and to tell your story that then the person who is speaking can actually hear themselves say things out loud for the first time. And then understand the power and the value and the worth in their words and their experience, and that is that process of coming to my own wisdom, is "Oh, actually, you know, I do know about my body. I am, I am the expert, not these people in their white coats, or you know, with their expertise, I am the expert. I know what I need. I can plan my rehabilitation. I can go back to the things that I want to do, and this is how I'm going to do it." And it's that, that kind of reestablishment of confidence and strength and hope that is so powerful. I think.

Katie Strong: I agree. I agree, Vivian. As you know, our listeners are primarily speech language pathologists working with people with aphasia. We also have people with aphasia that are listening, and researchers as well. But you know, the capacity for language being disrupted by aphasia. I was just curious, with Take Charge, as you've studied it, is you know, really a talking therapy with writing, and, and those sorts of things, and so I was just curious, you know, what would it take to extend this kind of intervention to people with aphasia, and what principles would you want to most preserve in the adaptation.

Vivian Fu: Yeah, thank you. That's such an important question. We certainly, in the Take Charge trial, included people with aphasia in the trial, and the way that we sort of just included them was if they could understand or the consent form and could mark an "x" on the form, we'd be happy to to have them included, and so we had people with mild to moderate and moderate to severe aphasia in the trial. And we hadn't made any specific changes or tweaks to the intervention, the facilitator just did what they could with what we had. But I think what has come out of reviews of the implementation of Take Charge now in New Zealand is that it is really important for us to look at how we can adapt the intervention for people with aphasia. I think for the facilitators in the trial, what they did was they allowed a lot more time, so the usual two and a half hours became three and a half hours, and that was fine if the person could continue. But also I think from the report we need to look at alternative ways of how we can complete some of these activities, whether it's providing images where people can point, whether it's a lot more inclusion of their family, their whānau important people to them who can help with, you know, subtle guidance, and, and, and having sort of lived with the person now, can read their non-verbal expressions a lot better than a stranger, a facilitator can and can help with the guidance of participating. And really, while Take Charge has been translated, I think, now into seven or eight different languages, we really need to adapt Take Charge to other communication needs and other languages, but what I.. so my role.. sorry, I didn't.. I'd actually say this, but my role in the in the large trial was as the blinded outcomes assessor, so I went around at one year after stroke. I traveled around to the 400 or so different other people, participants' homes around the country, and I sat in their living rooms, and I listened to their stories again. And then I did all of their outcome instruments and got all of their outcomes done, but I did not know which group they were allocated to. And then I locked all the data, and then I'd say, "Hey, so which group did you get Take Charge or not?" And it was really, it was good. I think out of the 400 there were only two people who, when I turned up, actually had the booklet on the table, and so you know, I just ignored it, and then, but yeah, it was, it was really good in terms of sort of blinding and masking, and then sort of having a guess as I was going through and checking where things were at. It was such a privilege for me to, as a stroke doctor, I think you know people don't usually get to do this as a physician, but to, to meet so many different people with so many different stories, and a number of people who still had moderate to severe aphasia, and and were telling me about the impacts of that on their life. But we were still able to communicate a year after stroke, and so I think it is so important that we don't exclude people with cognitive and communication difficulties. We have to adapt the things that we have to make it work for them. What I'd love is to be able to have some kind of focus group with people with aphasia, and, and show them Take Charge, and realize, oh, what can we do? How would this work better for you?

Katie Strong: I love that, and well. Well, and we haven't talked about the materials yet, but I do have to say they're so accessible, or they're very accessible from a visual standpoint as well.

Vivian Fu: Thank you. Yes, we are actually modifying them and making the font bigger and having better graphics. We started off with stick figures that Harry drew, and then I think we're actually making them a lot nicer in terms of the graphics, but what we do have at the moment is actually available online for free, and you can just download them as a package. It's if you Google it, it's the Medical Research Institute of New Zealand, or www.mrinz.ac.nz and then under programs, and we spell that as p r o g r a m m e s, and then under programs slash forward slash stroke, I think is where it lives, and at the bottom of the page you should be able to download, a training package and the booklet itself.

Katie Strong: Yes, lovely, and we'll have the links on our show notes as well, so you can check those out, listeners, if you're interested. So, thank you. You have two randomized controlled trials that you've talked a little bit about, and a cost effectiveness analysis and qualitative work, all pointing in the same direction that the cost data suggests that Take Charge actually might save money, and that is remarkable, and lots of evidence showing that, but still, it's a challenge in implementing into standard practice, and I was curious if you could talk with us about what you think stands between what the evidence shows and what actually gets implemented.

Vivian Fu: Sure, gosh, I love this question. It's it applies for so many interventions, I think, specifically for Take Charge, it's a number of things. So definitely the stuff that affects other interventions being implemented, but for Take Charge itself, it started off with a huge amount of disbelief bias, so people, you know, even after I presented the main results of the second trial at the European Stroke Conference in gosh, when was that? 2019 pre-COVID in Milan. So this is a huge international stroke conference, and this was a plenary session. People stood up and took photos of the results and went, you know, there was this collective gasp throughout the audience of 6000 odd people, but there's just this disbelief that something as simple as a conversation can make a difference to people's objective quality quantitative outcomes, like the, you know, Bartel or the FIM, what they, you know, what their physical outcomes are like at a year. And what their quality of life is like. I think for people who are stroke researchers, a lot of the focus is on that initial 24 to 48 hours after stroke. And you know, that that's kind of where that's kind of where all the funding goes, isn't it? So it's the pre-hospital stuff, and then the interventional things you can stick catheters into and thrombolysis, and you know that's, and that's all great. You know, I, as a stroke physician, I love that part of stroke as well, but to think that you could possibly do something at three to 18 weeks after stroke that could change a person's outcome by a year, and actually we've got a long-term follow-up study now that says that those those same magnitude of changes are still present at five years between the groups is, you know, kind of gobsmacking. And people just go, surely you've fudged this, or surely this can't be true. And so there's this huge disbelief bias that stopped us from being able to publish initially, and it was only after I presented the results in Milan that that we got accepted into a journal. And we'd been trying for about a year beforehand, and, and so there's, there's that disbelief. But also in the way that it has to be provided, you know, it's probably considered quite labor intensive. You know, one on one home visits, and that's why people of other researchers who do believe in Take Charge are now looking at providing take charge in different ways. Like I did a telehealth trial in Canada, in southern Alberta, when I was there as a fellow in Calgary, and there's potential other work that's being. Done in Australia with Take Charge, looking at providing it by computer avatars, by even maybe even AI, and maybe in a larger sort of telehealth format. And so you know other ways of doing it, but I think ultimately it's kind of cultural inertia, because you know, "We've never done this, this is not part of who we are. Why would we need to start something new?" There's probably kind of an established way of thinking about clinician and, and patient, rather than person with stroke, in still in how we practice, and this idea that the therapist and doctor are experts. And so I think it really challenges that dogma and challenges clinician's role, and therefore there's a resistance to accept that this is something that is useful and helpful, and actually doesn't, you know, you don't need to take it personally. You're still doing great work. Take Charge is just a tool that helps supplement everything else that's going on, and so there's a lack of time, and I think we also get quite, as practicing clinicians, we get quite tunnel visioned into this, you know, hamster wheel of go to work, treat all these people, go home. We just keep doing it. Hoping that things will get better for them, but, you know, we, it's only when we start looking at alternative interventions and alternative things that work and start trialing them and being open to that, that I think things will really start to change.

We've certainly had interest from random little parts around the world. I think it's been translated into Latvian. I've got people from Sweden who are interested. A little hospital in Germany, and then parts of it's been trialed in pilot studies in the UK. And Harry and I last year trained a whole bunch of occupational therapists in Hong Kong, so you know it is, it is kind of picking up, slowly but surely.

Katie Strong: Well to me, you know, most stroke survivors, or people with stroke, as you're referring to them, have chronic challenges, and so all of the early intervention, while important, doesn't necessarily help somebody navigate that longer term change. And so I love that this is just such an empowering way of putting that power back into the person's life, which it seems like it is showing up n in the results that you're sharing.

Vivian Fu: Oh, absolutely. I mean, if we think about it, if we just think about thrombectomy and thrombolysis, somewhere between five to 15% of all people with stroke are eligible, and then receive the treatment. That leaves what?, 85 to 95% of people who don't get to receive that. And even after they receive the treatment, there are consequences of stroke that are beyond the physical that don't you know don't have any other thing to address them apart from our routine care, so I completely agree with you.

Katie Strong: Well, thinking about what clinicians might be able to do tomorrow or you know, in the near future, for our speech-language pathologists or other practitioners who are listening today and are feeling the pull of this work, and you know, really encouraged by it, but are you know working in an embedded productivity driven impairment focused system, what's one thing that they could do differently in the very next clinical encounter that they have?

Vivian Fu: We have a paper, I think it's written. Oh gosh, where did it.. where did it get published? I think it was published in Practical Neurology. It's titled something, something intrinsic motivation. I should know better.

Katie Strong: I'm going find out, and I don't think I read that one, so I'm gonna find it, and I'll put the link in the show notes for everybody.

Vivian Fu: Sorry,Harry about the promo, but yeah, I'll send it to you, but essentially it's written to give some guidance on how you can embed Take Charge into your daily clinical practice. And it's written for neurologists, but honestly it applies to everybody. One of the key things is when you have that next encounter, obviously you know therapists do this a lot better than doctors do, but they ask a lot about, you know, what's outside of the person's life and what's important to them, but maybe move away just, you know, from the very practical questions like "How many steps do you have going in and out of your house?, and How do you hang up your washing?", or whatever, but it's, you know, really much less functional, but more, "Who are you? Tell me a bit more about yourself. What do you love doing? What gets you out of bed?" You know, if I might, the one that I like to use a lot on my ward rounds is, "If you weren't in this hospital bed right now, where would you rather be? What would you rather be doing?", and I do that on my rounds, and it's incredible, because you know, I'll hear all sorts of things, "I'll, you know, be on my boat fishing out on the lake", or I think this lady was like 84 or something. "I'll be with my girlfriends, we'll be having coffee at Tim Hortons", you know, and it's just, I don't know, it's something so unique to that person that I could never, you know, they're in their hospital pajamas with a whole bunch of stuff stuck to them, and I can't envisage them doing that, and yet I'm like, I want you to imagine yourself there. Where would you rather be? Okay, so everybody, that's our goal. It's not to get her home or to get her walking again. Our goal is to get her back in Tim Hortons with her eight friends, having coffee, like that is what this person loves to do. And I think that you know that inquiry, that it shows you care, it shows you see them as an individual, and I think it completely shifts your rehab focus, and then you can ask more questions about that, and they, you know, then you have this whole conversation about about what their life is like. And I think that part of being seen, even if it's only within 60 seconds, makes such a difference to that person. So that's one thing. The second thing I'd be, you know, doing is I'm trying to involve family as much as possible, as much as the person wants, and basically, just seeing them as an individual makes a huge difference already to the way you practice, that would be what I'd focus on.

Katie Strong: Agreed, agreed. Well, Vivian, is there something you wish people asked you about this work that they rarely do, something about Take Charge or stroke recovery more broadly that you think the field hasn't quite caught up to yet.

Vivian Fu: Oh gosh, this is a tricky one. I think one thing we ought to recognize is that everybody is doing the best that they can with what they have. And you know, we're not as clinicians on the ground on the front line, we're not involved with funding decisions, and what projects get funded and which ones don't. And there will be the ambitious amongst your listeners, who I really hope will be like, "Oh my gosh, I can apply for this little grant, and I'm going to pilot this, and I think we should give this a go with our people." and I think that is absolutely a great idea to have. And, and I would, myself and Harry will do everything that we possibly can to help support such projects from where we are.

I think the important thing to think about is that every little bit that you do makes a difference, and to not feel as though, because you know your funding runs out, or you don't get it, or the world is such a bleak place that you know it's not worth continuing to try. Because people with stroke who see you do this work, they will be grateful for it. And also the patient partners I've met that I've spoken with, and all of the people whom I've interviewed with the qualitative work, they're also happy to be part of something like this. And so even if it's a pilot project. Even if it's, you know, something that may not last, you'd be so surprised at how much momentum you can build with a movement of people who see the value in this and then take it further and further, And that's what I've been really impressed by, and kind of stunned by in all these different locations around the world who have contacted me. I've just been like, "Wow, can't believe [this]." There's this wonderful group in Hunter Medical Research Institute down in Australia, who basically took Take Charge back to their own unique Aboriginal community, the Gamilaroi peoples of that particular area of Australia. They have, like Canada and like the States, they have 1000s of tribes and lots of different groups that all speak completely different languages, but they took it to their local group, and they broke down, take charge into little bits, and then rebuilt it into an intervention that just works for them, and it's called "Yarning Up after Stroke", because what they do is they have a yarn. They yarn, and that's the way they tell their stories. It's yarning, and so you know, I just think it's incredible. Like, they got funding for it, they did it, and now it's an ongoing project that just keeps on in the community being provided to their people, and it's fantastic. So, I think it'll evolve. I love to see how it evolves, and I certainly don't think of, you know, this isn't the kind of intervention that we go around patenting and making a ton of money out of. It's the kind of intervention that everybody makes their own, and hopefully with a lot of input by people with stroke,

Katie Strong: I love it. Thank you. Thank you so much for being our guest today, and sharing about Take Charge, and your generosity in sharing about the intervention, and if people are interested in reaching out to contact you, so thank you so much, Vivian.

Vivian Fu: Thank you so much for having me. I hope I haven't spoken too long.

Katie Strong: Oh no, it's perfect.

Vivian Fu: I'm always happy to be contacted, and yeah, very happy to support anyone who'd like to explore this further.

Katie Strong: Thanks so much.

On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show, please see our show notes, available on our website at 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. For Aphasia Access Conversations, here at Central Michigan University in the Strong Story Lab, I'm Katie Strong.

Dr. Fu's Email dr.vivianfu@gmail.com

Resources and Readings

Fu, V. (2019). Taking Charge After Stroke: A novel, community-based intervention to improve the lives of people with stroke. https://www.semanticscholar.org/paper/Taking-Charge-After-Stroke:-A-novel,-intervention-Fu/3bc1dbb271f425c72e146510088856e3aad8683e

Fu, V., Fernando, K. M., Bright, F., Riley, J., McPherson, K., & McNaughton, H. (2025). Coming to my own wisdom: A qualitative study exploring the role of the Take Charge intervention in stroke recovery. Clinical Rehabilitation, 39(3), 377–387. https://doi.org/10.1177/02692155241310770

Fu, V., Weatherall, M., McPherson, K., Taylor, W., McRae, A., Thomson, T., Gommans, J., Green, G., Harwood, M., Ranta, A., Hanger, C., Riley, J., & McNaughton, H. (2020). Taking Charge after stroke: A randomized controlled trial of a person-centered, self-directed rehabilitation intervention. International Journal of Stroke, 15(9), 954–964. https://doi.org/10.1177/1747493020915144

Fu, V., Thompson, S., Kayes, N., & Bright, F. (2025). Supporting long-term meaningful outcomes in stroke rehabilitation. Current Neurology and Neuroscience Reports, 25, 17. https://doi.org/10.1007/s11910-025-01403-z

Harwood, M., Weatherall, M., Talemaitoga, A., Barber, P. A., Gommans, J., Taylor, W., McPherson, K., & McNaughton, H. (2011). Taking charge after stroke: Promoting self-directed rehabilitation to improve quality of life - a randomized controlled trial. Clinical Rehabilitation, 26(6), 493-501. https://doi.org/10.1177/0269215511426017

Te Ao, B., Harwood, M., Fu, V., Weatherall, M., McPherson, K., Taylor, W. J., McRae, A., Thomson, T., Gommans, J., Green, G., Ranta, A., Hanger, C., Riley, J., & McNaughton, H. (2022). Economic analysis of the 'Take Charge' intervention for people following stroke: Results from a randomised trial. Clinical Rehabilitation, 36(2), 240–250. https://doi.org/10.1177/02692155211040727

McNaughton, H., & Fu, V. (2023). Intrinsic motivation. Practical Neurology, 23(6), 489-492. https://pn.bmj.com/content/23/6/489

McNaughton, H., Gommans, J., McPherson, K., Harwood, M., & Fu, V. (2023). A cohesive, person-centric evidence-based model for successful rehabilitation after stroke and other disabling conditions. Clinical Rehabilitation, 37(7), 975-985. https://doi.org/10.1177/02692155221145433

Medical Research Institute of New Zealand. (n.d.). Take Charge rehabilitation resources. https://www.mrinz.ac.nz/take-charge-rehabilitation-resources

World Stroke Organization. (n.d.). Taking Charge after stroke: A person-centred approach to life after stroke [Webinar]. https://www.world-stroke.org/what-we-do/education-and-research/education/webinars/taking-charge-after-stroke-a-person-centred-approach-to-life-after-stroke