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