S3E6 Transcript - Don't Call Me Marginalized
Engaging Youth with Lived Experiences of Sensitive Topics
Overview
In this latest episode of asPERusual, host Anna Chudyk is joined once again by Brianna Hunt and new guest Sunday Queskekapow to explore what it truly means to engage children, youth, and families with lived/living experiences of sensitive topics—such as homelessness, substance use, and systemic oppression—in health research. Building on their work in the Art as Knowledge Mobilization project, they discuss the importance of using art, ceremony, and community-rooted relationships to foster trust, safety, and meaningful participation in research.
Sunday, a Two-Spirit Swampy Cree advocate and peer researcher, shares firsthand how centering Indigenous methodologies and lived experience transformed the project into something affirming and empowering for youth participants. Brianna, a settler researcher and community advocate, highlights the need for justice-oriented research that not only avoids harm but actively dismantles oppressive systems. Together, they emphasize the vital importance of language, relationship-building, compensation equity, and collective data analysis in creating ethical and transformative research spaces.
Key Takeaways
Lived/living experience must be at the center of research on sensitive topics to ensure ethical, trauma-informed, and culturally grounded approaches.
Language matters: Terms like “peer researcher” and “sensitive topics” empower participants more than labels like “vulnerable” or “marginalized.”
Relationships are foundational—building trust and mutual respect between researchers and communities is essential across all stages of the research cycle.
Honoraria and support must be thoughtful and equitable, reflecting participants’ expertise and lived experience on par with other research professionals.
Justice-oriented research goes beyond ethics—it aims to actively disrupt systems of inequity and empower communities through reciprocal partnerships.
Meet our guests
Sunday Queskekapow
Sunday Queskekapow is a Two-Spirit Swampy Cree advocate, consultant, and Gladue Writer originally from Ohpáskowayáhk (The Pas/OCN) and a proud band member of Kinoséwi Sípíhk (Norway House Cree Nation). With roots across Treaty 5. Now living on Treaty 1, Sunday advocates for northern 2SLGBTQIA+, trans health, and for Indigenous neurodivergent voices as an AuDHD person.
Brianna Hunt
Brianna Hunt calls Treaty 1 Territory her home, where she is grateful to live, work, and raise her little one. Brianna was the local project lead for the Art as Knowledge Mobilization Project. She also works at the Children’s Hospital Research Institute of Manitoba as the Institute’s Patient Engagement Coordinator.
Contact the host: Anna M. Chudyk - anna.asperusual@gmail.com
Table of Contents
To be updated soon
Resources
All of the resources below are free for everyone to read:
CanChild – Trauma Informed Practice in Family Engaged Research
Here and Now: Winnipeg Plan to End Youth Homelessness Youth Engagement Toolkit
Turuba, R., Irving, S., Turnbull, H., Amarasekera, A., Howard, A. M., Brockmann, V., Tallon, C., Mathias, S., Henderson, J., & Barbic, S. (2022). Practical Considerations for Engaging Youth With Lived And/or Living Experience of Substance Use as Youth Advisors and Co-Researchers. Journal of Participatory Research Methods, 3(3). https://doi.org/10.35844/001c.38683
Project Partner – Graffiti Art Programming
Project Partner – Manitoba Harm Reduction Network
Transcript
Anna
Hi everyone, thanks for tuning in to season three, episode six of asPERusual, a podcast for practical patient engagement. My name is Anna Chudyk and I am your host. For today's episode, we're continuing our focus on engagement of children, youth and families. But this time within the context of engaging people with lived/ living experiences of sensitive topics such as those without a fixed address, who use substances, who are facing different forms of oppression or facing systemic racism.
Before I go any further, I'd like to take a pause to acknowledge that my guests and I are all coming to you from University of Manitoba campuses, which are located on the traditional territories of the Anishinaabeg, Ininiwak, Anisininewuk, Dakota Oyate, Dene and Inuit people, and on the National Homeland of the Red River Métis. We also respect and honor Treaty Three territory, Shoal Lake 40 nation, as the source of Winnipeg's clean drinking water. As a first generation immigrant, and with all that is going on in the world right now, I am beyond grateful to be residing on these lands. That said, I'm also very well aware of the harms and mistakes of the past, including broken treaties that have contributed to me being able to live here. Thus, I dedicate myself to moving forward in partnership with Indigenous communities in a spirit of reconciliation and collaboration, through both my professional work and also in my own personal learning about Indigenous worldviews, which I've applied daily to help guide my life. Miigwetch.
Brianna
Thanks so much, Anna. I also think it's so important when we're reflecting on the topics that we're going to be exploring today, like systems of inequity that systematically impact Indigenous folks, so First Nation, Métis and Inuit folks, I think it's so important that we really take the time to pause and reflect on those acknowledgments and who are the stewards of the land that we're occupying, and how do the artifacts of colonialism and the ways that colonialism still applies today still impact those communities. So I really appreciate you opening with that, and I encourage everyone to take the time to reflect on that as we discuss our topic today.
Anna
Thanks so much, Brianna. And for anyone who thinks, hey, that voice sounds familiar. It's Brianna Hunt from season three, episode three, and she's made a surprise comeback, to talk about something else.
As always, I'll begin the episode with guest introductions before moving into discussions of key definitions and concepts and then exploring practical applications to patient engagement. So sit back, and send some positive energy to my two guests today, which will be helping lead us through this important focus: Sunday Queskekapow and Brianna Hunt.
Can you please introduce yourselves to our listeners?
Sunday
I go by Sunday Queskekapow. I am a Two-Spirit Swampy Cree First Nations person, originally from Opaskwayak, also known as the Pas (OCN), a proud band member of Kinoséwi, which is also known as Norway House Cree Nation. My family originates all over Treaty Five, I come from a long line of Cree people and have many relations in the north. I'm a proud Swampy Cree person whose home is in the North, but now I live and go to university at the University of Manitoba on Treaty One Territory with a major in Indigenous studies and a minor in gender and women's studies. I'm also an advocate and business owner, a Gladue writer and a proud advocate for our community.
Anna
Brianna, maybe before you introduce yourself, Sunday, what business do you own? Do you want to tell us about it? Just briefly.
Sunday
Oh, yeah. I co-own and co-founded a business called Kiwetinohk Consulting, where we consult on 2SLGBTQ+. We also do law policy, and we do Gladue reports.
Anna
And if somebody is trying to type that into Google, what would they write? How do you spell that?
Sunday
It is k-i-w-e-t-i-n-o-h-k (Kiwetinohk) and then consulting.com we have our website and we also have Instagram, LinkedIn, Facebook.
Anna
Amazing. I learn something new about my guests every day, even if I've had a chance to get to know them a little. So thanks for sharing Sunday.
Brianna
And I'm Brianna Hunt. Thanks for having me back on the podcast. I always think it's important when I introduce myself to just position myself as a settler on Treaty One Territory. So on this land, I have the privilege to raise my family and to work, and to play. Some of the work that I do, which I talked about on the last episode, is working with the Children's Hospital Research Institute of Manitoba. Some of the other work that I do is as a community researcher. So I work on different projects that are kind of passion projects for me, and the project that we're going to be talking about today is art as knowledge mobilization, and that's one of my passion projects. So this project specifically deals with lots of issues of inequities that disproportionately impact Indigenous youth. And so as someone who has so much privilege as a settler on the land that I live and work on, I really do feel that it's my responsibility to use the skills that I've had the privilege of developing, through my education and various work experiences, to amplify and make space for the voices of Indigenous youth who sometimes aren't included in every conversation where they really should be. So that's really how I see my role on this project, and I'm so grateful that I'm able to come and share a little bit about it, and just to spend time with Sunday as they share about their experience as well.
Anna
Amazing. Thanks so much to both of you for coming on and for introducing yourselves. So, Brianna, you've already basically touched on the answer to my next question. But please, after Sunday shares, feel free to add in anything that you think you may have missed.
But Sunday, could you please share what lived/living experiences of patient engagement are informing your perspective today, so that the listeners may have a bit of a better idea of where you're coming from and where your knowledge base lies with this?
Sunday
Yeah, so I was a peer advisor for art as knowledge mobilization, art and action. And so pretty much this project was a research project based in Winnipeg where we engaged with youth on houselessness, homelessness, sleeping rough, however they wanted to describe it and what their experiences were like and how we could use art to empower that in their knowledge. We made a lot of art throughout that, and we ended up making a zine and having an art show, and it was just really amazing and super empowering for our youth to be in ceremony. As a peer advisor, it was really important for us to have people like myself and our other peer advisors [to be] people with lived experience. Also all the peer advisors are also Indigenous, which wasn't a prerequisite to youth participating in our project, but it just so happened that all the youth participating in our research project were Indigenous. So it was super great to have all the peer advisors have experience with houselessness, sleeping rough, homelessness, and we're all Indigenous. And I felt like that really brought a lot of knowledge just from lived experience.
But also, at least for myself personally, I have worked with Indigenous communities and Indigenous youth for a lot of years. I also come from an Indigenous community in the North, and have been on the opposite end of this, of the research project, too, where a lot of northern communities are over-researched. And so I have been, like I said, on the other end of that, where there's a lot of systems and big academic people coming into our communities and kind of extracting information and not really doing it in a good way. And so as a peer advisor, with that lived experience and with experience engaging with youth in my past jobs, it was super important to me to do the exact opposite of what those people were doing to me when I was a kid. And so that was super important, just like leading in with ceremony and meeting people where they're at. And also, just being someone that could connect with these youth, just because of our mutual lived experience, even though the experiences are quite different, we had some commonality in a lot of things, and also all of us being Indigenous was super connecting as well.
Anna
Thanks so much Sunday! Before we dive deeper, I'd like to start off with talking about the terminology that we'll be using on today's episode. As always, when we're talking about engaging patients, caregivers and members of the public in research, we're referring to the active involvement of these individuals as members of our research team, in helping to guide the decisions that are made about the planning and conduct of a study or in research governance, through roles such as research advisors, collaborators, or leaders. Now, typically you’ll hear this podcast refer to people that are engaged in this capacity as patient partners, however in this episode we’ll mostly be referring to them as peer researchers.
So I’m wondering, Brianna or Sunday, can you help explain why we’re going with the term peer researcher in this episode?
Brianna
Yeah, I’m happy to give a bit of context to that, Anna, thank you. I have found, in my work with the Children’s Hospital, as well as my work in community, and working more in mental health, or social work-centric spaces that the terms are often very different. So I found that in Health Sciences, often folks refer to patient partners, or they’ll talk about, participant advisors, things like that. Whereas, in the social work, or more social sciences spaces, the terms that are often used are like, peer, someone again with lived experience, but those terms are just a little bit different. So they’ll usually say like a community partner, or a peer researcher, peer advisor, which just means that it’s someone who is, in one way or another, sharing the same experience as the people who are the participants in the study. So they are a peer to the folks who, for lack of a better term, are being researched. I think this comes from a peer support model, because in social work and social sciences and the mental health space, it's very common to have a peer support model of counseling or therapy or group work, and so having that term peer I think is really normal in that space.
Anna
Thank you for explaining that. That actually makes a lot of sense, and I'm really looking forward to further examining exactly how this whole idea of a peer is so vital to this research as well. But before we do that, I know that's something that I really found interesting and stimulating when we met ahead of this episode, was our talk about different terminologies when referring to the types of populations and peoples that make up this whole idea of sensitive topics. We very mindfully chose to go with the term sensitive topics rather than referring to these individuals as being vulnerable or from marginalized communities.
So could either of you also, because I know you'll do a much more eloquent job than me, explain why it is that we did land on this terminology?
Brianna
So one of the things that has been shared with me, by elders and knowledge keepers in community, is that often when we're talking about difficult topics or we're speaking about ways that folks have experienced oppression, we do it in a really disempowering way or a way that is really deficit based. We usually will start with what's lacking or what the problem is. So I've heard from those teachers that when we use words like vulnerable or marginalized, sometimes it can give the unintended effect of taking power or strength away from those youth or community members who are experiencing something challenging or something difficult.
And so they've encouraged me to kind of flip that and instead start with a strength based perspective, which I think is a really beautiful way to frame things. But we also don't want to sugarcoat. We know that not everything can always be flipped toward a positive. So when you say someone who's experienced something difficult or you're talking about a sensitive topic, it puts the onus on, rather than on the person as being vulnerable, it's something that a person has experienced or something that they're experiencing. So those are some of the teachings that I draw on when I think about what language to use, especially in the research space, where we know there's been a lot of harm caused in research. So we want to make sure that we're just approaching everything in a good way and taking those teachings forward that we get from our elders and knowledge keepers.
Sunday
I think you explained it pretty well. I feel like all I can really do is just reiterate that when researchers come into communities and their project is titled or what they're coming in with that mindset of like, we’re researching this vulnerable community. They're already coming in with this mindset, that label, for these people, from themselves. That's what they're giving them and not letting the people be able to label themselves and have that autonomy and sovereignty over themselves, instead of being labeled by the systemic power that is extracting information. It's just not a good way to start things.
Brianna
Thank you so much, Sunday. There was a teaching that I got from a friend of mine, actually, who I completed my graduate studies with, and she's like this badass black Indigenous woman. And she said, don't ever call me marginalized, I don't want to be within your margins. And I'll never forget that, I thought that was really, really cool and it's always stuck with me.
Anna
Thanks for sharing that, and something that popped out of our discussions for me, that's really stayed in the back of my mind around this whole conversation, is really the whole idea that we should never be defining folks’ experiences for them, including what they would like to refer to them as. And, that if we just come in with our own labels on how to define people and their experiences, we're actually the ones that are perpetuating the circle and the cycle of oppression, which in most instances we are there trying to help break. So that's why it's so important to go in and work with the communities and the people that you are trying to help, or engage, or partner with, and let them define for you what it is that they would like their community or their experiences to be referred as, what the focus of your research should be. We're going to dive into that more and more, but that's something that I'm really, really looking forward to with this episode. And I might keep repeating that, that I'm looking forward to this or that, but this episode is going to be great for a lot of these exact reasons.
So what are some of the key spiritual and emotional aspects of working with youth and families, with lived/living experiences of sensitive topics?
And I know that this may sound a bit ethereal to some of our members who are listening in today. But really, what I'm trying to get at is that when you're working, partnering with these individuals, it's important that we move beyond this biomedical sterile perspective to really consider the whole person and the whole nature of what makes them a person, as well as their experiences.
Brianna
Absolutely. Thanks, Anna. I think in particular in these areas of research, when you're working around sensitive or difficult topics, whether you're looking at something like experiences of violence, or in our project where we were looking at youth who have been unhoused and experienced substance use, it's really important that you're approaching it with a trauma-informed perspective. And that in order to do research in these areas ethically, I think you do need peer or lived experience engagement. So there are some research disciplines where I wouldn't necessarily always say that you need to have members of the research team from the community; although that's an ideal, of course, whether you're talking about basic science or even like things that are done in a lab, it's great to have a patient or a peer researcher on your team.
But I think in these cases, it really is unethical to do this research without folks who have that lived experience. And that might be a little bit challenging to some of what we think about the research world. But I do think it's integral to doing ethical research around these topics. So when you're going in to get started, I think you really need to approach it from a trauma-informed perspective, which means you need to do your own research, right? You need to understand what are the different factors that go into folks who have lived experience of this particular issue, whatever it is you're looking at, and how can you connect with folks in a really considerate and a really compassionate and empathetic way. And this might involve extra training, extra teaching, but I promise it's worth it. And that will really enable you to understand that when we talk about health around these issues, they're really multifaceted and intersectional issues where we need to consider the whole person.
Because in our work, we were working with youth who are unhoused, and over 80% of youth who are unhoused in Manitoba are Indigenous, we knew that we needed to use Indigenous research methodology, and our project team is made up of a wide variety of researchers who identify as settler, and First Nations and Métis. So, we were very lucky to have that perspective from the beginning. And we have a wonderful knowledge keeper who is able to inform that holistic perspective. And maybe Sunday, you can talk a little bit about how we used ceremony and how Leslie Spillett our knowledge sharer taught us in those spaces.
Sunday
Yeah. For sure. It was super important to have Leslie Spillett our knowledge keeper there, to be able to open us in ceremony and to be able to just open us up in a good way, to have a smudge, have a sharing circle, and then doing the same at the end as well. And it's super important because all of our youth were Indigenous and kind of like what Briana was saying too, it's just really important to have people with lived experiences and people from those communities to be a part of the research. Because some folks, if you're not from that community that you're serving, might not just understand the importance behind Indigenous knowledges and spirituality. And yeah, just of course, the spiritual aspect of being unhoused or being extracted from your community, it's really hard to explain that to a Western academic lens of like, it's not just the physical and mental that is getting hurt, to these youth and to homeless folks. It is also like the spiritual toll as well as not being connected to your community, not being connected to ceremony, and not being connected to your homeland. And yeah, sometimes it's not seen as valid in Western lenses and standards. So making sure that our Indigenous youth felt heard and seen, not just with their physical and mental struggles, and knowledges that they share with us, but also the spiritual needs —that they also need to be met as well. And that was just super important to be able to connect with as, again, someone with lived experience and also someone who could relate spiritually to a lot of these youth as well, thanks to coming from the same culture generally.
Anna
Thanks so much, Sunday. That makes a lot of sense.
So from what I've heard you say, it helps the research team to be able to more holistically conceptualize what the research problem is that they think that they're trying to study, and also ways to meaningfully and truly engage with the population to help dismantle likely some of what's previously existed in terms of bad experiences with other research groups, as well as lack of trust in authority figures and perhaps the health and social care systems in general. Would you say that's right?
Sunday
Yeah, for sure. And something I can kind of compare this to as well — when I was doing work with the Trans Health Clinic here in Winnipeg, I was doing a development day kind of deal with their doctors and their nurse practitioners. And trying to explain to them that, it's not just that Indigenous folks and 2SLGBTQ+ youth in northern communities in Manitoba need to be able to access trans health care in Winnipeg, it's that they need to be able to access trans health care in their own community. Because they couldn't understand or they eventually, I think they could kind of understand to their own extent of course… but they never thought of the spiritual aspect of having to leave your community to receive health care and having to explain to these practitioners that a lot of Indigenous people are land tied to their communities. And so leaving their communities to be able to receive such vulnerable care is really hard. And not being able to be around their community in their homeland is really emotionally devastating to a lot of us. And that's just something that they had never thought of, because none of them were Indigenous and none of them were, of course, from a northern community. They've always just had, the practitioners, have always had the privilege of receiving health care in the in their home community. So they've never really had to think about what it might be like for someone having to leave their home community, and also having that ancestral connection to the land where we come from.
Anna
That makes a lot of sense, Sunday.
And would you also say there is any particular benefits to the people who are participating in the research as participants to have a peer researcher that's maybe helping collect the data? So you've talked about how it can impact the way the studies planned, making sure that everything is, hopefully, holistically being taken account of. But what do you think, does it make any difference to the participants themselves to see a member of their own community, or someone with shared experiences being there, actually helping to do the research?
Sunday
Yeah, for sure. I think it's super important. Even just from like my own experience, I instantly feel safer knowing that there is another Indigenous person in the room, and especially if that person is helping with the study or pretty much just a part of that system that's supposed to be serving our communities. And also, it's just super important that most Indigenous people unfortunately know and have experienced the lack of data sovereignty in our communities and just the extraction from researchers and just systems in general, really. So, someone who's non-Indigenous or from a non-BIPOC community, they might not see a problem with gathering information and never talking to that group again because they're like, oh, we got our information. It's been since the dawn of academics that they kind of get their information and they go, and then they publish it or they give it to like higher ups or whatever. But then the community itself never sees it and they have no sovereignty over that, and sometimes there's harm done within that. And so to me, it's super important to have an Indigenous person on a team like that to ensure that doesn't happen. Because again, if you've never experienced that, you might not see a problem with it, and then the Indigenous communities are having to pretty much educate the researchers. And now a further weight is being put on their shoulders, not just giving them their knowledges, but also now having to teach the researcher how to treat them like a human being and not like a subject.
Anna
And would you say also, I know that in the past I co-conducted qualitative interviews with the patient partner, Roger Stoddard, and we interviewed patient partners. And I know some of the feedback that we got there was that patient partners felt that they could really relate to Roger because he had the shared experiences that they had. And when he'd sometimes ask follow up questions, they were different than ones that I could think of because of the differences in our own shared lived/living experiences.
So do you find that, as a peer researcher, maybe you found that other people who are the research participants related to you a bit differently, or perhaps you were able to get at things differently than the other, maybe non-peer researcher members of the team?
Sunday
Yeah for sure. I definitely felt like I could connect with a lot of youth, and that's kind of been the way that it is for most of my working career, just because of like my identity as well. I'm Indigenous, I'm First Nations, I'm queer, and I'm also autistic, and so like I got a lot of things to relate to, like many other Indigenous people. And I just turned 24, and so a lot of these youth are not that much younger than me. And I've worked with youth before in my career where we've been in the same high school together, and I'm working at that youth center, and I see them in the halls, and it's really funny that way to be a youth working with youth.
But it's also super great because I can relate with them so well and be that safe space. And a lot of the times, youth are going to come and tell me things, or open up about things with me because they don't see me as an authority figure. They see me as a fellow peer who also has lived experience and comes from a common background. And so they might be open to telling me something that they might be a little bit more reserved about than like an adult. You know, I am an adult, but like a non-youth person or like a kookum or like an aunty figure, which are very safe spaces, and hold a lot of importance in our community. Fellow peers also hold that safe space to be open to some things that you might not be able to talk about with other folks. So I think yeah, just being able to connect with people that way has been really great. This is why it's important to also, if you're conducting youth engagements, to have youth team members because I find that they can connect a lot easier with youth, they might feel a bit safer, connecting and chatting and sharing knowledge with them.
Anna
Thanks, Sunday, that makes a lot of sense. Brianna, maybe you could answer this one — something else that I found really interesting when we all met to talk about this episode, was something that you brought up in the context of Manitoba.
When talking about sensitive topics, Indigenous people are often overrepresented. And I know that you had shared with me some really great ideas about how you may really be losing the context that surrounds the topic that you are studying, when you don't engage these people with these lived/ living experience in the research itself. So would you care to speak to that?
Brianna
Sure, yeah, I think it also connects back to what I was saying before — that if you're trying to look at an issue or examine something scientifically that has a real world application and that folks are feeling real world consequences from, you really, in order to do it ethically, you need to have relationships with those people. There was a quote from Leanne Simpson that I watched in a mini documentary recently, where she was saying, if you are interested in doing Indigenous health research or if you are trying to tell Indigenous stories and you don't have authentic, real relationships with Indigenous people, I don't see how you can ethically do that.
And so in Manitoba, when we're looking at, because of the social determinants of health and because of the impacts, the ongoing impacts of colonization, we see a lot of overrepresentation of Indigenous folks. Whether it's chronic conditions, mental health stuff, like in our project when we're talking about unhoused youth, those things are very deeply connected to colonial systems like child and family services and other forms of oppression. So in order to ethically examine those issues and tell those stories, we needed to have Indigenous team members and folks who could show us how to do that in a really safe and culturally relevant, reciprocal and respectful way. And so, in addition to working with Leslie Spillett, Sunday, and our friendship and relationship that developed between Sunday and the other peer researchers, Cheyenne and Jaden, myself and our other team members, both Indigenous and non-Indigenous. Those relationships were really at the center of everything that we were doing, and made it ethical as much as we could. We were working toward doing justice-oriented research, and I think that's really necessary in this context.
Anna
Could you explain what you mean by justice-oriented research? Because I think the listeners get the idea of what you mean by ethical research, but what's justice-oriented?
Brianna
So when I'm saying justice-oriented research, I really mean research that goes beyond just being ethical and not causing harm, but actually is trying to work toward a world without health inequities. So that's what I'm talking about when I'm talking about justice-oriented research. Research where the purpose is to dismantle systems of oppression and to achieve equity.
Anna
That makes a lot of sense, because how can you dismantle a system of oppression when you're not actually the one who's directly experiencing the oppression? If you think about it, that's absurd, because what you're trying to dismantle is probably a system that you were part of, creating oppression that you're not even aware of. So I think when you explain it that way, it all made intuitive sense, but it really stands out and I hope the listeners hear that as well.
Okay, so as we move into the tail end of this episode, I was wondering whether you folks had any practical tips that you'd like to share for engaging children, youth, and families with lived experiences of sensitive topics across the research cycle? So I know you have a lot to share about knowledge mobilization, which I can't wait to reach, but since I'm a linear thinker, why don't we start with first conceptualizing and planning studies.
So what are some practical tips that you may have when it comes to engaging children, youth, and families with lived experiences of sensitive topics in conceptualizing and planning your study?
Brianna
I think the most important thing when you're thinking about engaging to start to conceptualize, apply for funding, all of those first steps is you have to really remember that relationship is at the root of it. So I would say this is the most important thing, and it's not something that's naturally fostered within the health system generally, like you're not really supposed to build relationships with your patients. You're supposed to keep really, really clear and distinct boundaries. Doctors don't really come into appointments often and engage in a lot of self-disclosure or vulnerability, but that's what you need to do to build authentic relationships before you can even begin to think about, you know, planning a study together. And that's the key word, right? Planning things together.
So in an ideal world, you will want to do all of the background knowledge and training around the specific issue that you're looking at, how systems of oppression play into that. Make sure you really understand the context around it and then be prepared to make friends. And so practical tips I would say take folks for coffee, don't be afraid to share about yourself, and be vulnerable to build those relationships. That's really going to be at the root of engaging in those first days. And then think about structuring your meetings and your research team get togethers around things that work for the folks that you're engaging with.
Say you are engaging with someone who is in the care of CFS (Child and Family Services), right? Like a 16 year old who lives in a group home. You need to engage with their social worker in order to get permission to have them as part of the research team, those are all things to think about. And then make sure that you're not scheduling your meetings during the school day, between 830 and 330 on a Wednesday, you're going to want to do like an evening meeting or a Saturday workshop, those kind of really practical things. And then also, if you're working with communities where gifting is part of the protocol, make sure that you're presenting tobacco and gifts whenever you're engaging with folks. And perhaps most importantly, make sure that you are offering generous honoraria or financial compensation as a gift, in honor of the time that the youth and families that you're working with are giving to your project, right? Reciprocity is a really important part of the process, so making sure that you are able to compensate folks in a really meaningful way that communicates that you really value them.
Anna
I'm glad that you brought up compensation because that's an important issue in engagement in general, but also seems to warrant extra consideration when working with people with lived experiences of sensitive topics.
So do you have any ideas for things that researchers should really start to be thinking about early when it comes to compensation?
Brianna
Yeah, I think one of the best pieces of advice that I have recently received is to compensate your partners with lived experience with the same amount that you compensate any other subject matter expert on your research team. So look up the rates of like what you would, how you would compensate a data analyst that you bring on your team, or any other really highly qualified personnel and then compensate your folks that have lived experience in that same way. Right? So I really appreciated that tip.
Sometimes there's a misconception that if folks have, for example, if folks are using substances that you shouldn't compensate them with a monetary gift. But I think it's important to really just challenge those ideas and misconceptions, because even people who use substances are just as deserving of compensation, and their time is just as valuable as anyone else’s. So I would say if you're coming against systems that are challenging, you're valuing and you're respecting of the time of your peer researchers, that it's okay to stand your ground and it's okay to say, no, this is really important, and we have to compensate folks with lived experience the same way that we would compensate any other expert. There are lots of things that you can draw on for that. Like you can go online and you can find different, you know, reasonings and rationales around why it's so important. Unfortunately, we do come across red tape, so just continue to be an advocate, that's part of the advocacy and part of that justice oriented research.
Anna
Thank you. And something else that I've heard that is really for me, helped to underscore the importance of peer researchers, especially in this space, is that they can also help you think of perhaps different types of roadblocks or considerations that you really need to account for, ahead of beginning to recruit participants. And then, of course, talk to the individual participants about them so that you're not just painting everybody's potential circumstances with a single brush. But things that some people may not think about is that not everybody has a bank account that's open, that you can just deposit money into. Or I know in some institutions it's common when someone makes above a set amount that you have to compensate them by mailing a cheque. Well, if someone doesn't have a permanent address or again, they don't have a bank account, then that's not exactly helpful as well. So it's important to think about these different possibilities. And then when you're actually recruiting participants, or even working with peer researchers, not to come in hot and insensitive and just assume that about them, but rather to engage in questions that you hopefully already have potential solutions to, about how best it is to compensate them.
Sunday
Yeah, I pretty much agree with, of course, everything that Briana said to you, it was super important to be able to treat our youth how they should be treated, like having a really good honorarium. And also of course, having honorarium that day, preferably in cash, also having lots of food, having medicines, having them to be able to do what they want when they need to. That's super important as well. They shouldn't be super structured… structured but it shouldn't be planned out to the T. You know, let youth go out for smoke breaks, let them come back in and out. Don't create that barrier even further with no smoke breaks or, you know, once you leave, you can't come back kind of deal. Yeah, meeting youth where they're at.
I'm also trying to think, which I don't remember if Brianna had mentioned this, there actually needs to be some sort of benefit to the people you're researching, because they're not just research subjects.
Anna
That makes a lot of sense. And the only way that you can actually know if the research that you are proposing to carry out is beneficial, and to actually structure research that is beneficial to these communities and groups of people, is by working with them in partnership to decide what that benefit is, right? You can't just go in and impose, oh, no this benefits you for these reasons because it doesn't work that way, nor should it.
So then what about when we think about recruitment? Do you have any tips for how to best recruit people from these populations into a study, both as research participants as well as peer researchers or research partners?
Sunday
For our project, one of our big things was we printed out posters about our project and the information on that, and we posted them in places that we thought that the youth we were kind of hoping to connect with would frequent. So this being like resource centers or just certain areas of the city, really just anywhere where we think youth might see them. So catering to your demographic. If you're catering to a northern community, maybe putting them in like the band office or putting it on Facebook or like mailing things because there's not always user centers for people to go to. Just trying to make sure that you understand your target demographic and where they're at, that people might not have phones and it might be best to like do it with posters. Or if you have connections with different organizations to be able to do that word of mouth as well. That's what I can think of off the top of my head.
Brianna
I agree 100%. The only other thing that I would add is because we were a study that was a partnership between community based organizations, so the Manitoba Harm Reduction Network, Graffiti Art Programming, and Laurier University out in Waterloo, we had the advantage of the social media network reach of Manitoba Harm Reduction Network and Graffiti Art Programming. So if you are, working on a study where you have community partnerships or you're working in partnership with different non-profits, or different organizations, definitely leveraging those partnerships and your recruitment can be so helpful.
Anna
Awesome.
Okay, so then moving along the research cycle, what about some tips for planning or carrying out data collection? I know we have gone through a lot of these in the actual episode itself, but if you had any key Coles notes for those people who are like me and want to make sure they don't miss the main points, what would you say they are?
Brianna
I think you highlighted so many of these really well, Sunday, so just to recap, give folks food, bring folks cash. Make sure you are flexible. I would say the most important one is make sure you're always flexible.
Anna
I know for me, something that really stood out as well is the importance of , as well as the very specific questions that you ask- so that you're not causing further harm, you're not offending anyone, and you're also actually capturing the data, the information, and the experiences that are truly relevant to these individuals, not what you think, as an outsider, of these experiences is important to measure. Because again, as has hopefully been the theme of this episode, if you don't do that, you're just perpetuating the systems of oppression, the cycles that you're actually in, they're hopefully trying to break or at least help disassemble.
Brianna
I think another thing with data collection that was really helpful for us with having, Sunday and Cheyenne and Jaden an active part of the workshops where we did all of our data collection. It was alsi the relationships between the peer researchers and the other members of the research team like myself and Quinn and Jody and some of the other folks who are part of our research team. Not only was Sunday and the other peer researchers able to build unique relationships with the participants, but also seeing the relationships between like Sunday and myself, for example, was a really good indication that the research space was safe, I think, for participants. So that is kind of that other layer of creating a safe space in addition to having Leslie there and having medicines available. But seeing the relationship that Sunday and I, and the peers and the other members of the research team built, I think, really created that space.
Anna
I have no doubt, it definitely creates a very safe and warm and open space here among us, and we're just hanging out virtually, having a podcast shoot, so I can only imagine what it would have been like live.
So moving into the end of the research cycle or the second last point anyways — do you have any practical tips for engaging children, youth, and families with lived experiences of sensitive topics in data analysis and synthesis?
Brianna
Sunday, do you want to talk about our data analysis workshop?
Sunday
As someone who doesn't do a lot of research, I really appreciated our data analysis workshop. Again, going off of the relationships built and continuing to build those relationships, the data analysis was super, I don’t know, community-based? I feel like I can't really like say it other than that, because, you know, we're all people from community, working in community and all just being able to talk and talk openly and about our findings and personal experiences and experiences throughout the project, made the space feel very safe and collaborative. Definitely more community driven than you know, you clock in 9 to 5 and you do your work in your little silos, and you bring in your part of the report to do that, and then, you know, it all comes together at the final end. But we all worked on it together, and collaboratively, and we all got to hear each others opinions throughout the whole thing. So it just wasn't one person, like taking over or doing different sections. We all just kind of switched and did a lot of teamwork, of course, and yeah, it was really great. I think that was a great way to carry out that community aspect throughout the whole project. And yeah, I don't think there is one part of the project that felt like it wasn't community centered.
Brianna
Thanks, Sunday. So we did a collective data analysis process for the Art is Knowledge Mobilization Project, where we all came together for a weekend. And so on the Saturday morning of the weekend, everyone on the research team, the investigators, the community based researchers, the peer researchers, all came together. And on the Saturday morning we had a little intro workshop on what is an intro to thematic analysis and thematic coding. And so that was put on by the PI [Principal Investigator] of this study and some of the more experienced researchers to do some capacity building for the rest of the team around what do we mean by thematic analysis and how do we do it. And then we actually all had printouts of the transcripts, because we did qualitative data analysis. So we had printouts of the transcripts and we all split up into groups. We just sat together for the whole weekend and did like a hand coding process where we came up with a collective code book where everyone was present- so all of the peer researchers and then the rest of the research team.
In order to make it accessible, we also hired childcare, and we had two rooms where at the University of Winnipeg, actually, where we were able to have the kids in one room with the child care practitioner because lots of us are moms. And then we had us all together doing the data analysis, in another room. And it was a really beautiful process where we collectively came up with the main codes that we would use, and then took that away for like a secondary data analysis. But this was a really wonderful period of like a full day Saturday and full day Sunday, where we all shared food, got to visit, got to really dive into the data together. And that's, I think, one of the things I'm most proud of about the project is that each phase was really focused on engagement and that we were such, we had such strong relationships in the research team, especially after spending all of that intentional time together.
Anna
Wow, that truly is amazing and I hope you folks are planning on writing up a methods paper that describes your approach in greater detail. I know one of the chagrins of patient engagement and research is that usually, unless you're trying to find a journal that'll let you publish something that's a bajillion words that you really can't do justice to the methods and the approaches of engagement. This definitely sounds like something that deserves its own manuscript or its own peer reviewed focus. So I can't wait to see it -I see you nodding. All right, so I know this is your passion and I'm super stoked on it.
So could you share any tips that you have for engaging in knowledge mobilization, as well as your specific experiences with what that looked like in your project?
Brianna
So from my perspective, because this project rested so heavily on the input and the feedback given to us by the peer researchers, we thought it was only appropriate that in whatever capacity they were interested and able, that the peers really led the knowledge mobilization process. So a big part of our knowledge mobilization is we created a zine from the art that was actually created during the workshops that we held with the youth, and that was done again through a collaborative process with the peers and the rest of the research team.
Anna
Before you move on, could you explain what a zine is? Because not everyone is as hip as you.
Brianna
Yeah, so a zine is, I think it comes out of the 80s. It's just a small, self-published magazine often associated with like alternative movements, human rights movements and social justice movements, also closely tied to the punk scene in the 80s, from what I understand, from my small knowledge of zine history. One of our research team members, their name is Jody Martens, and they did their whole master's thesis on creating zines as methods of empowerment with youth, and so they're well-versed in that, but I'm just kind of dipping my toes in it. So in addition to that zine, which we circulated to a lot of professionals working with youth who are unhoused, and we brought it to conferences, both international and national conferences. The peers have led a lot of presentations. So I'll let Sunday talk about some of those presentations that they've been a part of, as well as the other peers.
Sunday
So we just did in a conference, the International Conference for Indigenous Child Health, and we've done a few conferences in regards to like harm reduction. We went to the End Homelessness Winnipeg conference. We also did, oh gosh, what else was there?
Brianna
Cheyenne did the International Conference on Youth Homelessness Prevention in Toronto.
Sunday
Yes. Yeah, the one in Toronto. We really justcatered to conferences where these voices really needed to be uplifted. Especially, yes, the one in Toronto, and the international one for Indigenous child health, where a lot of homelessness and harm reduction methods aren't really talked about in these spaces.
Brianna
What was that process like for you Sunday? What have the presentations been like for you?
Sunday
The presentations have been really, really good. I find that a lot of people are really intrigued by the method of art used for knowledge mobilization and especially with connecting with youth. And I think a lot of people were very intrigued about our method, how we connected with youth and how we went about the project. I think that was probably one of the most asked questions and stuff that we talked about during our conferences besides, of course, the work with our youth. It was really great to be able to connect with a lot of other organizations and folks around the country about how to better engage with Indigenous youth and especially with Indigenous homeless youth.
Anna
I know that some peer or patient partner researchers who are tuning into this episode may be both intrigued, as well as a little bit intimidated by the notion of engaging in presentations about the research. I know that I myself, as a quote unquote researcher, was really nervous the first few times, and still continue to be, that I was put in charge of both organizing or giving a presentation.
So what would you say, Sunday, were some things that really helped you become more comfortable, or that just basically helped you be able to take part in these presentations?
Sunday
I think it really helped us having the team with me and having us all together and just knowing that we went about the work in a good way, but that I also wasn't scared of criticism or any sort of recommendations. And knowing that we're all working towards the same goal of helping our youth. And I think that's what made it the easiest for me. Yeah, just being super open to community feedback, and knowing how important this topic is and how to better educate people and how to engage better with youth and Indigenous youth and homeless youth really just persevered. And I think, I know like all the the other research advisors were also quite nervous to do presenting and whatnot. What I think all of us having each other's backs and then being supported by Brianna and Jody and a few other people on on our team, it was really great.
Brianna
And some practical tips that I would offer as well for researchers. If you're presenting with peers who have helped you, take on or shoulder some of that load of going through the administrative process, because you've probably gone through it at least a handful of times, whereas often your peer or patient partners won't have that much experience. So even though I knew that Sunday would be leading the presentation, I took on a lot of the role of writing up the abstract, making sure, of course, that Sunday and the other peers felt comfortable with everything that was submitted. But I went through those hoops and stuff because they were just more familiar to me, and I had more to draw on. So not expecting them to take the front load of that labor, but then giving the opportunity for them to be kind of in the spotlight whenever they felt comfortable.
And then the other thing that I would say that has been a learning experience for me is it's really important to offer opportunities and also make it clear that it's not a requirement, right? Because sometimes folks are really eager and they are really interested in presenting, and sometimes people just don't care, and it's not really of value to the peers that you're working with. So don't make assumptions that everyone's going to want to add that to their CV. It might be very valuable to you to present at a conference, but it might not be valuable for someone else. So make sure to ask those questions.
Anna
Amazing. Thank you for that. And so we're at the top of the hour, and before we bid everyone adieu, I wonder Sunday and Brianna, if you could help give the listeners an idea of what you think are some key takeaways from this episode. I know that's a huge ask, but I guess what really I'm asking is:
What are some key messages that you really hope the listeners walk away with from this episode?
Sunday
I know for myself, I really hope that people can take away how important it is to have people with lived experience on your research team and just be able to just be open to non-Western standards of research.
Brianna
Yeah, those are great. I think one of the key things that I'd love people to take away is the importance of flexibility. I think that's really important, especially when you're working with folks who might be navigating difficult things in their personal lives. It's always important to be flexible in our work, and I think sometimes we work within systems that don't really lend themselves to being flexible or to having that work life balance. But when you're working with folks who are navigating, maybe they're navigating difficult systems, things like that, it's really important to have that flexibility.
Make sure you show your appreciation when you're partnering with youth and families, especially around difficult topics, and make sure you're creating opportunities for support. So an important thing that we offered was connection with a social worker. If it was needed at any point, we always let people know, we're going to be talking about difficult topics. This is something we're going to be exploring, and these are the supports that we have in place should you need to connect with them. Build relationships, that's one of the most important things. Sunday, are you okay with it if I share just a little bit about what we learned together through the process that we talk about all the time?
Sunday
Yeah. For sure.
Brianna
So, with Sunday's permission, of course, I'll share that there were some topics that came up throughout the time that we worked together that were really emotionally heavy. And that Sunday recognized that they were triggering for them, and because we had a really strong relationship, we were able to talk about it and to navigate ways to work together and partner to make the process more easy. If we didn't have that relationship, I'm afraid that those learnings would have been more harmful and might have created might have had a negative impact much longer than they did. Even when you have the best intentions sometimes when you're working around difficult topics, harm can still be caused, and people can still experience harm. But when you have a grounding and good relationship and your research team is a safe space, it can create a buffer so that that harm can be turned into a learning, or you can make some meaning out of that.
Anna
Thank you for sharing that. And definitely one of my key takeaways from your episode is the whole importance of relationship building, and also of not assuming. One of my favorite things about patient engagement and research is that you, as the researcher, no longer have to assume what you think is important to the research, based on previous literature, or clinician experiences. You get to work with the people who are actually affected by whatever topic you are interested in, to understand and plan and shape studies that not only holistically study the topic that you're interested in, but also with the help of these people, hopefully start to contribute to dismantling the systems and righting the harms and the wrongs that have been created in the first place.
So thank you both for coming on. As we wrap, I'd like to take a moment to thank Briana Kelly and the George and Fay Yee Center for Healthcare Innovation for the help with editing this and last season's episodes. Next time you're on your smart device or computer, I'd ask you, the listener, to please check out our website: As per usual.substack.com for resources from today's episodes, as well as interactive transcripts from this and previous episodes. While you're there, please be sure to subscribe to the podcasts newsletter. And importantly, if you've enjoyed today's episode, please do share it with others as well as subscribe to the podcast itself, through wherever it is that you download your episodes from. This really helps others more readily find the podcast. If you'd like to contact me, please shoot me an email at Anna.asperusual@gmail.com. And do be sure to add me to LinkedIn by searching Anna Chudyk, and my last name is spelled c-h-u-d-y-k. As always, thanks so much for tuning in and please, until next time, let's keep working together to make patient engagement and research the standard. Or as per usual.