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 f
