S3E3 Transcript - Kick off to engaging children, youth, and families in research
Overview
In this episode of asPERusual, host Anna Chudyk launches a new series focused on engaging children, youth, and families in research. Joined by Brianna Hunt (Patient Engagement Coordinator at the Children's Hospital Research Institute of Manitoba), Michelle Roy (parent Patient Advisory Group member for the iCare study), and Onalee Garcia-Alecio (youth Patient Advisory Group member for the iCare study), the episode explores their personal experiences with patient engagement over a decade. Brianna emphasizes how equity, flexibility, and relationship-building are key when involving young people and families, while Michelle and Onalee share the vital role of creating fun, welcoming environments that make sustained engagement possible — highlighting activities like games, small breakout groups, and the use of anonymous tools like Mentimeter to foster honest, meaningful contributions.
The episode dives deeply into practical considerations for researchers, including when and how to engage youth directly versus working through parents, and how to adjust activities across a wide age span. Michelle and Onalee reflect on how engaging in research helped them transform a difficult type 2 diabetes diagnosis into a source of empowerment and community building, stressing that lived experience is just as valuable as formal education in shaping research. The episode also discusses barriers to engaging Indigenous families in research and offers strategies to build trust, such as involving Elders and creating visibly inclusive spaces. The episode closes with a hopeful message: patient engagement across age groups is less about perfect strategy and more about authenticity, relationship-building, and honoring everyone's contribution as essential towards better, more equitable science.
Meet our guests
Brianna Hunt
Brianna Hunt calls Treaty 1 Territory her home, where she is grateful to live, work, and raise her little one. Brianna works as the Patient Engagement Coordinator on the iCARE Cohort Study, part of her broader role at the Children’s Hospital Research Institute of Manitoba.
Onalee Garcia-Alecio
Onalee Garcia-Alecio has been diagnosed with type 2 diabetes since 2015, and a part of the iCare research group ever since. She is a 21 year old First Nation and a second generation Canadian.
Michelle Roy
Michelle Roy is the mother of two young adults with type 2 diabetes. Her and her children are status to Treaty 5 and have been apart of iCare research group for about 10 years now. She views this research group (through Children's Hospital Research Institute of Manitoba) as having been a blessing and providing an opportunity to give back to her and her children’s community.
Contact the host: Anna M. Chudyk - anna.asperusual@gmail.com
Table of Contents
Coming soon
Resources
All of the resources below are free for everyone to read:
iCARE Study Info - https://www.dreamdiabetesresearch.com/research/type-2/icare/
Training Modules on Patient Engagement in Child Health Research - https://porcch.ca/modules/ (Modules Patient Engagement 101 Parts 1&2 are targeted toward researchers and research staff)
Ethical Research Engagement with Indigenous Youth from the Yellowhead Institute: https://yellowheadinstitute.org/resources/ethical-research-engagement-with-indigenous-youth-seven-requirements/
Conducting Research with and by Indigenous Youth from the First Nations Child & Family Caring Society of Manitoba: https://fncaringsociety.com/sites/default/files/indigenous_youth_voices-_a_way_forward_in_conducting_research_with_and_by_indigenous_youth.pdf
Youth Engagement Guidebook for Researchers from camh INNOVATE Research: https://foundrybc.ca/wp-content/uploads/2020/06/E.12-INNOVATE-Research-Youth-Engagement-Guidebook.pdf
Transcript
Anna
Hi everyone! Thanks for tuning in to the season three, episode three of asPERusual -- a podcast for practical patient engagement. My name is Anna Chudyk and I am your host. Today's episode is a special one because it kicks off our series of episodes focused on engaging children, youth, and families in research. For those of you who are unsure of what I mean by engagement, I mean actively involving children, youth, and families in shaping the planning and conduct of research. This could involve, for example, having them help decide what questions to ask, how to design a study, and/or how to synthesize and share the results in partnership with the broader research team. Throughout this episode, you'll hear us refer to children, youth, and families who are engaged in this capacity as partners, advisors, or peer community researchers. All right, so enough for me. Let's get started by learning a bit about our guests and the experiences that brought them on to this podcast and informed the perspectives that they share: Brianna Hunt, Onalee Garcia-Alecio, and Michelle Roy. Welcome!
Could you please introduce yourselves to our listeners?
Brianna
Absolutely. Thanks, Anna. My name is Brianna Hunt, and I am the patient engagement coordinator at the Children's Hospital Research Institute of Manitoba. Before we get started, I just wanted to take a moment to express gratitude for the land that we're on today. So I'm joining the podcast, and I know some others are as well, from Treaty One territory, which is the traditional territory of the Anishinaabe, the Inninu, Anisininew, the Dakota and the Dene peoples, as well as the homeland of the Métis Nation. For myself as a settler and uninvited visitor to the to this land, it's very important for me to take a moment to express that appreciation for these Indigenous peoples who have been the stewards of this land for time immemorial.
I came to my work in patient engagement from a health equity perspective. So I did my graduate training in mental health and social determinants of mental health- health equity, justice anti-oppression and anti-racism in research, particularly as it pertains to health research, are really what brought me to the field of patient engagement. The World Health Organization and other governing health bodies have been saying for years that one of the main things we can do in the move toward more equitable health systems is to engage those people who are most impacted — so patients, youth, families — I'm really passionate about making sure that their voices are centered in the research that we do. Thanks again.
Michelle
Thank you Brianna. My name is Michelle Roy and I'm part of the PAG group, for the iCare Research Study, PAG standing for the Patient Advisory Group. I am the parent of Onalee Garcia-Eliseo. We were approached initially, upon diagnosis back in 2015 to become a part of this research group, and it's been a delight and a wondrous, and the things that we have done throughout the years, which are really important to me, are to provide education, to break some of that stigmatization, and also just to let the general public and everybody know what it's like to be a youth diagnosed with diabetes type two, and for the family as a whole.
I'm also Indigenous, I come from the treaty five territory of the Anishinaabe people. My mom was a residential school survivor, so through the Truth and Reconciliation movement, we are now able to get reconnected with all that we have lost. Especially for myself and my family, we're more urban members of our reserve, off-reserve members, so we have lost a great deal, including our traditions, our healings, our teachings, our language, etc. That is the negative ripple effect of residential schools, how it's affected generations that go beyond the people that actually were members of those schools, like my mom is such. And that movement has brought an ability to heal for everyone. And hopefully these ripples will go on throughout the generations so that our kids, my daughter's kids and future generations will know what it means to be Anishinaabe. And be able to stand tall being Anishinaabe.
Onalee Garcia-Eliseo
Hi, my name is Onalee Garcia-Alecio and I am 21 years old. I am type two diabetic and I was diagnosed in 2015 as a preteen.
Anna
Thanks again Brianna, Onalee, and Michelle for coming on to this podcast. Something that I find daunting and exciting about the concept of engaging youth, adolescents and family in patient engagement and research is that in a way, it does really stream such a wide range of ages and experiences as compared to, for example, adults or older adults even. So even though the age range may be wider, to me at least, the methods and the approaches that you would use among, let's say adults age 24 are probably very similar to the ones you'd use among adults aged 45 or older adults age 65. So as we make it through the season, something that I'm always going to ask our guests is to help the listeners hear about what experiences they're sharing in terms of their age range as well. I think that'll really help anyone listening to think about, okay, if this is the age range that I'm looking to engage, these may be the tips for it.
So now, with that out of the way, I was wondering if you could explain where your engagement experiences came from in terms of the age range through which you Onalee, as a youth were engaged in? And through that, Michelle, to understand who you were a parent to within the engagement spectrum as well?
Onalee
Okay, well, I was diagnosed at the age of 11 with my brother. What made me engage mainly was the honorariums. Also the fact that I would have my mother there with me, to make sure nothing was like going wrong and I was safe at all times. Another thing that got me interested was the fact that I could help people through this diagnosis.
Anna
So you started at the age of 11 and now you're 21.
So, have you been engaging with the study over the span of ten years?
Onalee
Yes, I have been. I have been a part of this study for about like ten years. They approached us, I would say, about two days after we got diagnosed. I approached this really fast.
Anna
I find that fascinating because with your wide range of experience, I think one of my big stressors or sources of anxiety of moving into engaging youth and families is that whole spectrum of age and how people change over time, and how ways you'd connect with an 11 year old, may be different than a 14 year old than a 17 year old. I know when I volunteered at my kid's school and I was in charge of monitoring lunchtime, 12 year olds just stared at me, no matter what I did. And so I'm terrified of trying to engage 12 year olds and just having them stare at me again as well.
So, what would you share in terms of how you saw the evolution of engagement? So you would have gotten older over time, so maybe you were more comfortable with it, but did you find different activities, maybe worked with you better, or how was that from being 11 to 21? Are my fears founded or no?
Onalee
I would say your fears are founded a bit. When I was 11, what really got me intrigued into the program was the fact that I could help people. And well yeah, the honorariums, of course, but it was more the fact that I was able to help people and I was able to learn more about this diagnosis that was given to me at a very young age. And I was also able to make light out of a very negative situation, because it took away a lot of things, but it also gave me a lot of opportunities at the same time. I would say some activities that got me truly engaged were probably group talking, asking me questions about how I felt and how this affected me because I like talking about that. Other things that got me engaged were the reward systems. I did homework, I got rewards for that and stuff. Also, everybody was always really nice, no matter what. Everyone was always kind and patient, and I really appreciate that, because that also helped me feel very comfortable in this situation because everyone was much older than me.
Anna
So, what was the age range then? Was it a blending of people, not just 11 year olds? Or tell me more about that?
Onalee
It was, I would say, a blend of people. I apparently was the youngest. I don't know who the oldest was or how old they were, but I'm assuming like the group age was around 16.
Michelle
Yeah, It’d have to be under 18, and then over. Because we grew with the program, as a family, and as my kids grew, they also grew, and the assignments became a little bit more, their views on it became different. They had different opinions and different things to say and whatnot. But it was just really an awesome blessing to our family as a whole, this group and the engagement piece has actually been pretty easy for us. We don't have a lot of hurdles to get over, we live within the city of Winnipeg, we can easily attend in-person meetings. We can access and have better access to internet here, so we're a lot easier to engage. Whereas more of the groups that are up north, or cities around, or reserves around, they have those barriers. So engagement was really quite easy for us. I think now my kids, as an adult, they have the choice whether or not they want to participate. I don't ever say yes for them as a whole, I give them the opportunity and they just automatically jump into it and plunge into it because they want more of the good feelings that come with it, with helping others and the education piece that we still learn because it's everlasting. Every journey here, with us, with diabetes, learning how to manage it and all that. I just see the only thing that's changed is basically their age and maybe some of their insights they give.
Anna
So for those of you listening, we're going to get into the nitty gritty of different activities that can be used to engage with youth and families later into the episode. So if you're sitting here now being like, ask a question about specific activities, we're going to cover that in probably 20 minutes, so park that for now.
The two follow up questions that I would like to ask, I'll start with the first one;
What made you stay? Because that's also quite the feat, being engaged over ten years. So we heard about what made you join… but what made you stay? And was that the experience of the other members in the panel as well? Like, were you guys the only ones who stayed for ten years, or was there real retention among the group?
Onalee
I would say that we were not the only ones to have stayed for the ten years. We have switched out like a few people every now and then, but there is still a handful of people that have been there for a really long time. What keeps me there though, is the environment overall, I would have to say, because it's such a nice calming environment and it's so accepting and they're always trying to find new ways to improve it, and that's really great. And they're trying to make more ways for everyone to be more comfortable and to share their ideas. Because at first not everyone was comfortable, so they started asking us, how can we make you more comfortable sharing your ideas in this environment, in this group? And that really actually helped. And they listened to us, which we appreciate it very much.
Anna
What do you think for you, Onalee, was the biggest change or something that really helped you feel more comfortable?
Onalee
The biggest change was probably splitting into smaller groups. I've never been a big public speaker, so it's kind of hard for me to public speak in front of people. And I really appreciated that they would break us up into smaller groups so we didn't have to talk in front of ten plus people. We would only have to talk to about 4 or 5 people, very helpful.
Anna
And what about you, Michelle? What do you think made you stay all these years? And were you, would you say, one of the only guardians that stayed or was there a lot?
Michelle
No, I'm definitely not the only guardian or parent that has stayed within the group. For me, just being involved, getting those feel good feelings from the effort that my kids put in and the insights that we gained from it, and working together with all those different activities. They come up with the TikTok videos and the educational posters and Onalee being part of a scientific paper here and being an author on it, and just the general going into giving samples. I found every aspect of it very fascinating and very welcoming and very-especially the samples, because I got reports that were really detailed about my children's health. So those were really great, and it looked at other aspects too, I was able to discover that Onalee was very anemic and very low in iron. So just that brought me a sense of comfort — the samples that my kids would give and the reports that we would get back. But I do not have a problem staying engaged. I'm one of the easiest people to stay engaged because I love the feel good feelings that it brings. It brings light and blessings to that very devastating, that moment of diagnosis. I just can't get enough of it.
Anna
I have two more questions before we move on to ask you, Brianna, some questions as well.
Something that you had mentioned, Onalee, that really helped you initially say yes to the engagement process, was the fact that your guardian or parent could be with you as well. Were kids and their guardians engaged together for all of the engagement sessions, or was there maybe some would be with the guardians and the youth together and other sessions would be split? How did that look?
Onalee
Well, some of our sessions were split but the majority of them were together, the blood sample, the heart rate machine, and then the meetings were all with parents. But with questionnaires, you were able to kick your parents out of the room because, sometimes you don't want your parents have too, well not too much information, but personal information you don't want them to know. So in that case we were able to separate.
Anna
And then when you were part of the PAG, as you call it, the Patient Advisory Group,
Did those sessions where you provided feedback on the study, that helped make the decisions around it, were those also together? Or were they separate from the Guardians, would you say Onalee?
Onalee
Sometimes we would have breakout rooms where the youth would go into one and then the adults and parents would go into another one. But we would always meet together at the end and in the beginning of the meetings to discuss what is supposed to be about. And then we would break out and then they would ask us questions, and then we would come back together and we would discuss what we learned.
Anna
I find that really interesting because for me, that's something I've been trying to think through. One study that I'm helping launch, we're going to be bringing people together to give their perspectives on, it's called pharmacogenetics testing, but basically taking your blood to help the doctors decide what medicines may be the best for you. And so initially we were thinking about having two separate groups, so a parent advisory group and a youth advisory group as well. And I don't know why it never occurred to me that you could actually have both groups together, as long as they're not too big, and then just separate out into breakout groups so that you could get the separate perspectives.
Can you think of any downsides to that? The only thing I can think of is maybe it would take more time for the group to meet itself, if you're always kind of coming back to discuss what was said. But, could you guys help me through that with your experiences? Do you think that's a better approach than had you perhaps been split into two separate groups that always met separately?
Michelle
For me, I like the format of coming together and then breaking out into breakout rooms. It may take a little bit more time, but I don't mind that so much. As a parent, I would find it a little bit more overwhelming trying to juggle work, home, all their curricular activities and then research study groups. So let's say one night is just for them, then the next night is for me, I'd find that a little bit more overwhelming at points, because then that would mean I'd have to schedule myself to be able to drop them off and pick them up to that group. So I really liked it together. Even though it may have took a little bit more time at that one time, I found it more convenient. What's your thoughts Onalee?
Onalee
I liked it, I don't know if I would consider it more convenient. I guess in the sense of you it would be more convenient, but I personally liked it. So downfalls is that maybe some kids would not talk unless their parents were around.
Michelle
They would either talk if we were around or not around? I think it depends on the individual.
Onalee
It does depend. But for me personally, I needed my mother there for like the first few groups to truly become comfortable. And then after I was able to talk without her being there.
Anna
That makes a lot of sense and I think applied to my own work and the different age ranges, especially if it's younger people as well, like an 11 year old, that would be a very important grounding. Just as you even establish the group, thinking about cohesiveness, but then also giving the opportunities to split out because like you said, some people may not be as honest in front of their parents, especially depending on the questions that you're asking. And some parents, in my head, have a tendency to speak over their children as well. So that could be another thing that would definitely affect, how many answers and, how truthful answers you got from the youth as well.
Switching gears to my last question about this before we move on to you, Brianna, in your response, you had mentioned about your community and less access and how some people were from up north. So, my understanding is that over 80% of youth iCare PAG members are Indigenous, which reflects the fact that Indigenous people are disproportionately impacted by diabetes.
I know that when we had talked, you had said that perhaps you could share your experiences about facilitators and barriers to engagement of urban Indigenous people, or perhaps even those from up north as well. So I was wondering if you'd still be willing to expand upon that?
Michelle
For sure. Winnipeg itself is considered an urban reservation. So we are Indigenous here, but we have never lived on our actual homeland per se. And that has a lot to do with the residential school and my mom. But to get them engaged, whether they live in the city or not, they still have to build some kind of bridge of trust. Because there's a lot of Aboriginals or Indigenous people that lost trust in the medical system and medical professionals, for very good reasons. And the racism that happens in these places, not our clinic, we've never experienced it there, or in the iCare PAG group, but within the hospitals themselves. I've gone to hospitals myself and I've declared that I was Aboriginal and the treatment that I got after I declared that was vastly different than if I went to that same hospital and they thought I was a French person because my name, Michelle Roy, is pretty French, so I can definitely see that line there. So it's a little bit more of an effort that they would have to do on their end to kind of bridge that gap, and heal that, and build trust with those community members in the reservations a little harder, they'd have to work at that, as opposed to the urban people, I find.
The ones that have grown up in the city like myself, I'm a little bit more trusting with the medical professionals than my family that lives on the reservation. And a lot of times when they come in from the reserve for medical attention, if I'm close to them, they're asking me to come with them, as a support, to bridge that, that's the way they look for that kind of gap. So I think bringing Indigenous people into your group, especially Elders and stuff, to have a moment to provide teachings or to share a smudge or to share a sharing circle, those kind of things would add in to bringing the trust and building that bridge, with this particular study and other studies that maybe have many Indigenous members in it.
Anna
Onalee, what about you? Do you have any experiences or perspectives you'd like to add on that?
Onalee
I do not have any experiences, but my mother's perspective I would have to say is spot on.
Michelle
Yeah, I think with the youth, there's that extra layer of trust that you got to build with them. And for my kids, they found me being a part of it was that bridge also. But that's a catch 57 right. Depending on your topic, if you're talking about sensitive things like sex or, you know, suicide ideology, the children aren't going to want their parents so close.
Anna
So I guess what I'm hearing you say too, when people are thinking about engaging and recruiting youth into their studies, yes, it depends on the topic. And I know, Brianna, you and I have talked about marginalized populations as well, or sensitive topics, how sometimes you actually need to recruit outside of family units as well, and just go to the youth themselves if they maybe don't want to necessarily have certain things shared about themselves, with their parents, or their parents don't know. So that aside, it sounds like if you're recruiting youth into something that is less sensitive, a good idea is to target the family unit, even if it's just the youth that you're looking to work with. With this approach, the parents can help reinforce with the youth maybe the value of the study, and even more than that, establish that bridge of trust that the youth can trust you, it is a good use of their time, and they'll be okay as well.
So then something that's going through my head is maybe even if you just are looking to engage with youth, maybe depending on the age, the first study or two, you invite the parents in as well so the children feel safer and then you can slowly start moving on to only working or engaging with the youth. What do you guys think about that?
Onalee
I think that's a wonderful idea actually. Getting to work with the parents and getting the child comfortable in the environment is a really good idea.
Michelle
I think it's great. Throughout my experience being a parent, there's moments, you've taken them to the hospital where I got to step out, when they're talking to a doctor, a medical professional. Because I know they don't want me to know about it, and I want them to be completely open and trustworthy with them or truthful with them - so I'll step out, at those moments. And also, there's information I don't want to know about my kids too, as a whole, so I think it's great. I love the format that they use, how they bring everyone together, and then they break off into little rooms as needed, depending on the topic. Even when they're doing the questionnaire at the PAG iCare study, there's a questionnaire that they give to the parents to fill out about the mental health aspect, what we see in our children, and they give that questionnaire to the kids and they situate us in two different spots. So we're filling this out privately at the same time. And I thought that was really great, because it gave me a chance to be truthful and honest without them knowing, and it gave them a chance to be truthful and honest without me knowing. So it worked, I believe that's a really great model.
Anna
That's awesome. Thank you for sharing all of that. And now Brianna, let's turn the spotlight, if you will, on to you. But Michelle and Onalee, as you'll see, these questions go across the research cycle, so please also feel free to jump in. And more than feel free, please do jump in as we work through this next step of the conversation.
So just to begin with, Brianna, could you tell us more about your role as a patient engagement coordinator and how you facilitate engagement of children, youth, and families in it?
Brianna
I am the patient engagement coordinator at the Children's Hospital Research Institute of Manitoba. And that's a really broad role, so I love variety, and I definitely get that in my role. I get to work with a lot of different research teams across different areas of health research, and there are so many different ways to do patient engagement. So with the iCare study here, we have a Participant Advisory Group, which as we discussed, is made up of youth who are participants in the study, who are living with type two diabetes and who come together to form an advisory group that guides the directions of the study. And it's a long term cohort study, so as we've established, the group has been around for a long time and has been guiding the research for a long time. On the other side of that, there are also shorter term projects that want to involve patients or family members or community members, and they'll consult on a shorter term basis. So maybe they would bring someone on as a project advisor specific to one project over the course of a year.
And I also run advisory groups that are for CHRIM or the Children's Hospital Research Institute, internally. So we have a research advisory council and a research advisory council for youth that all of the CHRIM researchers can access if they want to run a material by a group of youth, if they want to run maybe a set of results and say, hey, did we frame this in a way that is non-stigmatizing? They're able to run that by those advisory councils. So it's a really broad spectrum, and I'm so lucky to be able to engage folks at all of those different levels and in all of those different ways.
Anna
So you in many ways are living my anxiety and thriving in it. An anxiety in the fact that you're figuring out how to engage what to me, seems like such a diverse age range of not only children, youth, but then their parents as well. So, I'm hoping we can dive into that more by really having you describe maybe thinking across the research cycle. So beginning with, even when researchers are starting to think about a study, and hopefully realize that that's one of the better times to actually starting to engage with people of lived experience.
So what would you say are the key facilitators and barriers that you guide research teams to consider as they engage youth, children, families across the research cycle? And are there special considerations that vary across these age groups?
That's something that I want to figure out as I made this big thing that terrifies me.
Or are there some core truths, that everybody should consider and then maybe adapt depending on the age range or whether it's children with their guardians, etc.?
Brianna
So a few things that I would ask every researcher or research team to consider first and foremost are their capacity to engage with community, their flexibility and the study that, to what extent are they going to be able to make changes dependent on the feedback that they receive and then also their resources. And this is a really important one, and can be kind of a tricky one to talk about, because there's still this pervasive idea in research and in academics, in some fields more than others, but that expertise only comes from like doctors, professionals, folks who have advanced degrees, that's really where we should be honoring our expertise. But you really need resources in order to properly compensate the expertise that people with lived experience bring. So no matter what age range, or what community I'm looking at, I always ask folks, what resources do you have in terms of capital, like financial resources that you can use to compensate folks, as well as human resources to do good coordination and relationship building with anyone you want to bring on to your research team as an advisor. So whether that's a kiddo, a family member, or an older youth with lived experience, those are really important factors that I would ask about first.
And then, like you said, at the very beginning of a research project, that's a great time to engage because there often is a lot of flexibility. And, I also would challenge the research team to think about whether or not they're willing to be flexible in their methods. So even pre-grant application, or pre-proposal, sometimes we're really fixed in our ideas. And sometimes engaging with community requires a little bit more flexibility there. And then I usually check in around their understanding of community engagement as a method of working toward health equity. So, I really want to make sure that everyone has an understanding of why you might come across barriers. Just as Michelle so eloquently put, there is in many communities, a very understandable mistrust of researchers in the research field, especially in health research. And so I want to make sure that teams really are grounded in that understanding and aren't going to project any difficulties that they're having on the families that they're trying to engage with. So that would be my grounding.
Anna
And for those wondering, what do you mean by community engagement? So do you mean patient engagement or are you using that term interchangeably or what's it mean to you?
Brianna
Yeah, I use community engagement as a really broad term that could encompass like community advocates, kiddos with lived experience, youth with lived experience, patients, participants, family members. I consider those all part of the community that we're trying to to reach. So when I say community engagement, I really mean it in that broad sense.
Anna
And so with that, when you say community engagement towards equity, you're also really pushing people at the very beginning. So we can now move into recruitment. But first, Michelle and Onalee, I'll see if you have anything to add on the whole idea thinking about how do I make the engagement process more equitable.
So as I'm engaging, I'm not just recruiting those who may be the easiest to join, but also thinking about different subsets of the population that I work with, and trying to ensure that even the voices of those less heard from are also being included. Is that right?
Brianna
Yeah, absolutely. And it's also such a benefit to researchers. So I also, in addition to all of those really important things, I really want researchers to understand that by nature of engaging community members, they're going to be doing more equitable health research. So it's that two fold piece of benefit and really understanding how to support and try to work toward equity in the way that they're doing research as well.
Anna
And why does that matter? I always go down to the why, but I find if you can understand the why, then you don't have to memorize anything. It's what I even tell my children. And that's how I try to live with life, if I can understand why, then I can internalize it.
So why does it matter?
Brianna
So we see so many illnesses and disparities in health along socially determined lines in Canada. So I'm sure many listeners are familiar with the social determinants of health framework. And the more that we work toward health equity, the better outcomes that we're going to see for all communities, and the less that we're going to see socially determined outcomes that are negative for communities who have been underserved. And in Canada, we know specifically in Manitoba that our First Nations, Métis and Inuit people who are living in Manitoba have far worse health outcomes, due to inequities in health care, and due to a long history of colonization. So I think that's really at the root of why it's important, and when we start to work toward health equity, we will see improvements in health for all folks who live in Manitoba.
Michelle
I think it'd be good for health, for health equity, for Indigenous people, it really has to work on that trust. I should be able to feel confident walking into an emergency room, knowing I'm going to get the proper care whether or not I acknowledge I'm Aboriginal or Indigenous, or not. Because it depends where I go, if I will acknowledge it. So eliminating that would be a great help to equity in the health care system, because a lot of Indigenous family, my family members, they're sick as heck. They don't want to go to the doctor because they fear getting that bad care. They fear sitting in the waiting room and then passing away. They fear the racism they face from the health care professionals and the environment itself. So what I find is when I walk into a space and I'm looking at the walls and stuff, if I see some Indigenous art, then I think, okay, they're more welcoming of my heritage, my background. This might be a place where I can be a little bit more comfortable. So just simple things like that. I think a lot of professionals don't focus on the environment, the walls, like hanging some Indigenous art, acknowledging that kind of stuff goes a long way.
And with the research groups I found when I first got approached, I was like, well, I'm not educated, I'm not a health care professional. What benefit would it be for me and my kids to be in it? So having the endocrinologists to just say to us, hey, this is your opportunity to educate us was a big winning point for me. I think that would be great to put into when you're bringing people in to research groups that don't have that formal background.
Anna
What do you think, Onalee? What do you think helps with recruitment? So something you've said earlier on was the buy in from your parent or guardian. Do you think, maybe even going beyond your own experience, since you've worked with the advisory group for so long, what do you think would help make youth want to join or be a part of an engagement opportunity?
Onalee
Probably the part where they could do some good to the world and help people, because everybody wants to live on and everybody wants to be remembered. So it's like, hey, you'll be remembered if you're in this research because you helped.
Anna
We did a study, it was talking with patient partners who were older, but that was one of the themes that really came out was altruism. And that's why many people do enter engagement opportunities because they want to give back, they want their experiences to be applied, to help make other people's experiences better.
Michelle
And sometimes you need to point out that their experience is valuable, and it is needed for them to actually say, okay, yeah, I want to be a part of this because I thought, what's the sense of us being a part of it initially? We're not educated, we're not medical professionals, how are we going to help this research group? And they had to actually point out, your lived experience here is very valuable, your story is very valuable. And the other thing I find with youth that gets them to engage is not to tell them, but to plant a question that causes them to think. And that thinking process automatically starts the engagement process, I find that works with my youth really well.
Anna
Thanks so much Michelle, and Onalee for getting us onto the whole idea now of recruitment.
So what would you say, Brianna, are some key considerations that you tell researchers looking to recruit children, youth and families into their engagement project? And how do they vary, maybe across the age span?
Brianna
So this is an area that is definitely age and demographic specific. So I would always ask, who are you trying to target with your recruitment materials? And then, we're going to create the materials and distribute them based on that. So if you're looking at a younger set of kiddos and you want to connect with them, probably connecting with parents is going to be a good idea. So where are the parents going to be? Maybe in the clinic when they're coming in with their kiddos, that's probably a good place to start. Parent and kid programs around the city can be a good place to start. So if you can build relationships with folks who offer parent and kid programming, whether it's like community centers or different health centers that will have parents coming in, that can be a really good place to start. One thing that I'm just beginning to explore, and I've only been in my role for less than two years now so I'm still building those relationships, I'm really curious of what it takes to build relationships in different school divisions. So that's something I'm looking at exploring now, but I'm certainly not an expert there.
And then as you look to connect with older youth, if you're not using social media, you're missing a huge opportunity. And, I'm also not a communications person or a social media whizz, but I recently sat down with someone who is, and they walked me through the steps of building a social media toolkit, and it's not just about posting. So you could certainly go on your CHRIM or your research team Instagram account and post a post. But if you're able to connect with larger organizations that might have a bigger following like say, Klinic with a K, or the Rainbow Resource Center, some local organizations that are already have a lot of youth followers and ask them if they'll connect with you. That can be a great way to get your recruitment materials out there as well. In addition to sharing within your own research communities, because there might be folks who are your colleagues who have an awesome young adult or family member who they've worked with on another project, who they think might be a really great fit for your project too. So definitely recruit in those professional circles as well. But I would say social media is a big one, and then looking at connecting with other local organizations.
Anna
And since I'm such a concrete person and I know there's not a straight answer, when would you roughly say you make the switch between targeting parents to recruit youth, versus going straight for the youth?
Brianna
It really depends on the person. And I think Michelle and Onalee articulated this so well when Onalee said, I felt more comfortable when my mom was there. But we know that there are youth who feel the opposite, right? So it's really about variety. You might have, a 13 year old who is really eager to participate without a family member. And then you might have folks up to 14 or 15 who really want their family members there. So I would say the key age where there might be overlap would be between 12 and 15. Certainly 16 and up I would be looking at targeting youth and not so much parents unless it was a very specific reason for doing a dyad. And then under 16 maybe looking at those pairs.
Anna
So you've recruited parents, youth, parents and youth into the study, what would you say then, if someone's coming to you and now asking;
I've got these people, now what? What are different activities that I use? I've got 11 year olds and 18 year olds, how do I engage them together? Or perhaps I only have 12 year olds, how do I stop them from just looking at me blankly, like when I was a lunchtime monitor that one time, I will never repeat. What are tips? Are there key suggestions? Help me with my anxiety.
Brianna
Try to make it fun. And then the biggest thing is relationship building at the beginning. So whether you're going to have a meeting where everyone comes together on zoom or everyone comes together in person. Let's just take that as an example: You have a group and you have folks all the way from age 11 up to 19, plus caregivers. Let's say you have this wide group and you're coming together online. A great thing to do is do like an online trivia or something to to get things started. And don't be afraid to really share about yourself too, and have space in a first meeting for it to be about relationship building. Don't have a super packed agenda where you review a huge terms of reference, and then you set three goals and five strategies moving forward, don't do that. Just focus on getting to know each other in that first step and make it really fun.
And then I often will do with a mixed group some separation. So if it's online -into breakout rooms, if it's in person-making sure that you have enough facilitators that you can break off into 2 or 3 smaller groups, maybe parents and younger kid dyads, and then older youth in one room. So separate into those two groups, that could be a really helpful way to go about things when you're having those first conversations. But certainly start with fun, start with games, and don't be afraid to spend that time because it's not time wasted. I know we're so stuck on productivity, and we want to make sure that we're not wasting any of our time because it's so precious, but I promise it's not wasted time.
Michelle
I have to second that, Brianna. I absolutely agree, you need to take that time to build relationships and have fun. That's what brought us to it, and that's what's kept us in it. Every time we come to a meeting, we know we're going to have fun, and we know we're approached by friendly people that embrace us, that welcome us, that don't judge us. And the one thing you can always start off with is a smile. Like if you greet people with a smile automatically, that's like, hey, I'm welcome here. So I really love that.
Anna
So, Onalee, what would you say were the most fun? Let's start with icebreakers and then move into general engagement activities that you've been engaged through, that you would say people should really consider because they seem like real winners for getting people to talk and contribute, or even to team build.
Michelle
The one activity that sticks out in my mind with these iCare PAG meetings, it was one of the first in-person ones after the COVID that we attended. We were given a piece of paper and they were told what to draw, but we weren't allowed to look at our drawing during the time we were drawing it and everybody was doing the same activity. And then afterwards we'd look at our picture and we'd share our picture. I absolutely loved that, that building, because it was fun and we were all doing it together. But everybody’s drawing was so diverse and so different, and it's something that is always stuck in my mind. So, play play play. Making it fun, light, sharing laughter, all those good feelings will bring people back.
Anna
And what about you, Onlaee?
Onalee
I would have to second, one of the most fun things was probably the drawings. They would get us to draw like random pictures and then we would share. There was other things I'm trying to remember. The one time where they got us to draw these things on plates, and then we shared them with the rest of the group. And after that we took, like a photo. Yeah, that was really fun, and I appreciate that.
Michelle
It's actually one of the photos that I kept to because it held a special meaning. We had fun in that moment, everybody was working on that plate, drawing their picture, not looking (It was a paper plate, by the way) at their picture as they're drawing it. And it was one person in the group that was leading it and describing it, and we had to draw what she was describing. So it was really fun to see what we drew and what everybody drew, and how it did not look like what they were describing in some cases. And yeah, it just brought about laughter, it was really great.
Anna
So for those who don't understand necessarily, or who may be a bit more new to this area and may not fully grasp — the importance of the fun is that it brings you together. It brings you out of your shell, and it really creates a space where people feel as they're part of something, a group. And then that's what establishes the openness or helps establish, to share and get down to business about providing feedback on a study or helping shape it, or direct it, or create it.
Michelle
It makes you feel good, so you want to go back for more. You want to attend, you want to participate, you feel like you can contribute, you don't need that degree to contribute. So it's really great the play aspect, I loved it. The more they make me smile, the more they make me laugh, the more dopamine and all those feel good hormones they release, the more I want to be a part of it. So it's really great to do that, I love that Briana brought that up.
Anna
I can totally agree with that from personal experiences. So we've got the icebreaker activities all about fun, getting people to engage, laugh, think. So then what about when it comes to actual engagement activities.
Are there any staple ones that, Brianna, you recommend to people if they're really trying to get people to help them, maybe think through the type of data that they should collect, or the priorities to focus on, outcomes that matter to patients, all the things that patient oriented research is about? Are there any ones that you suggest to people as winners?
Brianna
I'm sure that there are people who have great answers to this question and really creative ones. I'm not the most creative person, so I do a lot of just transparent sharing. And so once we've gone through, and had a lot of fun, I'll often ask folks to help walk through a document with me, do a read aloud and give feedback thing that can be really helpful. Online, I've started using the online tools like Mentimeter, where you can get live feedback as you're going through a meeting. And I found that's really helpful, especially if you have people who are shy to be able to contribute their ideas. So I ask a lot of really transparent questions and say, this is where we're trying to go with this, does this make sense from your experience? Do you want to share a story about how this has been reflected in your life? Does it not make sense? Those kind of things I think are really basic, but it's where I'll start to elicit that feedback.
Michelle
And if I could add, if you had a blend of questions in there, open ended and closed ended questions, that would be really great. Because sometimes, if it's all open ended, that thinking is overwhelming. So if you could have some close ended, just a quick yes or no, that's really awesome. That Mentimeter, it's a wonderful tool, I absolutely love it. But some of the open end questions I struggle through, because I'm trying to listen to the meeting, but I'm also trying to think. So then it gets to the point where the next question comes, and I didn't get to put my answer in because I was too busy participating and listening. But yeah, it's really great.
Anna
Are there any activities where you've come together and the research team's asking you to help them decide maybe, how to change a tool, like a survey, that they'll be using in the actual study? Or maybe they'll want to know what are different ways that we could measure outcomes- are there any activities that you found were really beneficial? When the research group really wants to get your perspectives on how to design or run the study?
Onalee
I really like the Mentimeter.
Michelle
We did that, remember, we were looking at the questionnaires, and we went through them and we broke out into separate groups, the adults and parents in one and the youth in the other. Did you like that?
Onalee
Yes, I did like that. I like breakout groups too, yes. I also really appreciate the breakout groups because they honestly helped me get my information out of there, because sometimes I don't really want to talk because sometimes older people scare me a little bit.
Also, the Mentimeter thing is brilliant, especially for when I don't feel like talking. I can just put my answers in and send it away. And also nobody knows they're my answers, it's completely anonymous. I hope, at least I think!
Michelle
No, I can’t see your answer.
Brianna
No one knows, Onalee, it’s all anonymous.
Anna
Because I've never actually used it in an engagement, so do people ask a prompt? People write in the answers and then everyone has a chance to contribute a written answer, and then you share with the group what people said, and those who want to build upon it can, before you move on to the next question? That's how I’d apply that, but how have you seen it used?
Onalee
I've seen it used the exact way you've explained it. They would ask the questions and then we would type in our answers, and then they would go through the answers, and whoever wanted to elaborate or add on to them would add on to them. But I've noticed there's usually, the elders and the older people that would add on to them. And then the youth tend to only use Mentimeter.
Michelle
Also, with the Mentimeter, there's some questions where you had a selection for your answers. Then it would present it as a poll, 37% like this, 50% like this. So, it all depends on the style of question you use. But it is a valuable tool, it's fun actually, brings a little fun into the meetings too.
Anna
I find that really helpful, because in my mind I thought you always have to think up fun games to keep everyone engaged and entertained as you're trying to get feedback on the study, and that's been one of my greatest anxieties, is how do you find these games? So that's really reassuring to hear that it's important to set the stage, as with any engagement experience. And then you can use more traditional means, but then it also seems like it's important to give people the opportunity to provide written feedback and to expand upon it as well. And another big take home message that I have is instead of just doing big group things, taking the time to break out into smaller ones as well, so that people may feel more comfortable, especially if there's a wide age range because older people are scary sometimes.
So we've talked about helping provide feedback on data collection. But what about when you're bringing people together to help you make sense of the data — so to maybe to co-analyze it or synthesize it and then turn it into some sort of knowledge mobilization product as well- what would you say are some key tips around that, Brianna?
Brianna
Yeah, I think when we're talking about data analysis, for this project specifically and some of the other projects that I work on too, sometimes the statistical analysis really goes over my head and I know goes over the head of a lot of us who are engaged in the PAG. So what we'll try to do is figure out how to frame the results, that the statistics whizzes and that the doctors come back to us with, and they say, hey, we found this correlation between A and B, or we found this finding, why do you think that we might have found that? What in your lived experience could explain this? And opening it up with that question, sometimes we'll do it in smaller groups, sometimes we'll do it as the big group, we'll ask a little more targeted questions. But that's the biggest and most brilliant thing that participants and family members and community members can bring is, from your experience, how can we explain this result? And that can really help to avoid any… sometimes with diabetes and other sensitive topics, there's a lot of stigma that can go along with it, and we always want to make sure that we're framing things in a way that is not stigmatizing, and that is empowering and strengths based, and we wouldn't be able to do that without the PAG.
Anna
Michelle, Onalee, do you have anything to share, maybe some good approaches that researchers have used to get your feedback, or your input on making sense of findings?
Michelle
Questions is always a great place to start because it gets the wheels turning and it plants the seed, the thought and it engages the person automatically. I find questions are really great. Yeah, I think you really got to consider your subject in that too. Like if you're talking about something, say, suicide ideology, something a little heavier, you might want to do it in smaller groups, maybe even an individual level.
Anna
That’s a really good point, so it's not only thinking about the general aspect of getting feedback, it's also what are you asking feedback on and how sensitive is it, and probably will youth and guardian perspectives vary, and will they vary if they're asked separately as well. So, I love that.
And then lastly, what about when it comes to knowledge mobilization? So taking the data that's been collected, the analyses that have been done, and really trying to turn them into manuscripts, to write them up or other sources of outputs as well. What would you say have been really useful activities for that? Are they the same as the other ones, or are there any unique ones that you think people should consider?
Michelle
I think the ones that we discuss are really great, but also there's that reciprocal thing there of knowledge mobilization. It has to be a reciprocal relationship, right? Our knowledge has to be mobilized towards the researchers and their knowledge mobilized towards us. So it's a learning curve, and we have to learn from them, they have to learn from us kind of thing. But definitely play groups, fun activities, relationship building would be really great, start on that. It's absolutely necessary in order to get into the mobilization. Being clear on how you want that information, that knowledge to be moved and where it's going to be moved to, the audience that will be receiving it, all that comes into play. It would be a lot different if we were doing something for youth that we're trying to entice youth in, or if we're working with older adults or even with professionals. So you have to consider your audience.
Brianna
I'm excited to share some of the awesome stuff that you guys have been involved with. So iCare has done some really cool knowledge mobilization stuff over time, and they've done things like co-creating infographics. So when they came together and really told the research team, you need to shift your focus away from just the biological model of type two diabetes and start looking at like the psychological and social implications as well. They created a graphic that was a biopsychosocial model of type two diabetes for youth. And that's a really cool graphic that we still use today.
We're presenting together, so Michelle and Onalee and her brother and myself are presenting together at a conference at the end of this month. And on the poster that we're presenting, we use that graphic that was created a number of years ago. So very exciting stuff. They've also made a TikTok, and we're looking at creating another series of short videos that can be released on TikTok, Instagram and Facebook Reels, as well as YouTube shorts. And I know they've done some other wonderful infographics too. So, co-creation, working on things all at the same time, and then also just sending things for feedback, right? So creating a graphic together and then making sure it hits all of the heads on the team before it is released to the public. I think that process is really beautiful and the families add so much to it.
Michelle
And that's also where your audience comes in. Because if you're creating an infographic for older adults, you're going to avoid colors like yellow and red because it's hard for them to see. So you also got to bring your audience in, where this infographic is going to be presented to, who's going to view it? But yeah, I think knowledge, that piece is my favorite part about this. I love sharing my knowledge and input and seeing other people's knowledge and input and putting that together, like Brianna does really great with that and presents a little piece of everybody and everything she does, it's amazing.
Anna
It totally make sense too that if you're trying to create outputs for that audience, you should have that audience involved in the creation of them. That's one of the basic logical arguments for patient engagement in research, so I'm glad you brought that up as well. I've really appreciated talking to you all, and I know that we're getting up to the top of the hour.
So right before we wrap up, I wonder if there are any key takeaways that you would like to share, that you'd like listeners to walk away with from this episode?
Michelle
For me, I would just like to say, you know what? Take the plunge, take the risk, jump on in, and be a part of a research study group. You'll find that it's rewarding in many ways, and it brings a lot of feel good feelings. So for the youth out there, the families out there, the parents out there, really think about it, really try. Because if you see, if you put in good effort, you're going to get good things back.
Onalee
I would have to say the same thing, just jump into it. It opens a lot of opportunities. You have an opportunity to help the medical field and make it a little bit better for the people around you, so they don't have to experience what you experience, which is a great thing, if you ask me.
Michelle
And just that, you don't have to be have a degree to participate. Your lived experience and your story are just as valuable as a degree.
Anna
Beautifully said, that's such an honest and important truth that I'm glad that you shared with everyone, and I hope, if nothing else, that is what both people who'd like to engage in research walk away with, and also those who are looking to engage patients or other people with lived experience in research really walk away with and internalize as well. It's the value and the importance of lived experience and it’s vital role in the scientific endeavor.
Michelle
The guidance that the people, the educated people with degrees brings that's valuable too. That's absolutely necessary, I don't want to downplay that.
Anna
No, it's together that it makes something better.
Brianna
I think my main takeaway is going to be for you and researchers like you who are scared about youth engagement. It's a fair fear because youth can smell when you're not being genuine, from miles and miles away, and you know, they can be a tough crowd, a tough audience. Especially that like 12 to 14 age range can be really tough. But we have lots of tools that can help, and if you are transparent and focus on relationship building, those are the two main things that can help to facilitate really strong relationships with participants and family, as time goes on. So don't be scared, there are lots of tools available, there are great resources online as well. I wish I could think of some off the top of my head, but perhaps we can link some resources for youth engagement that folks can use if they want to know where to get started, because there's a lot out there. And think about what you like to do for fun too. So I thought it was so sweet, what Michelle and Onalee shared about the drawing game, because that was actually a game that someone taught me at my baby shower and I just brought it to a PAG meeting one time thinking, this might be a fun thing to do. And so the fact that that stayed with them for so long is really powerful, so embrace the fun and don't be scared.
Anna
That's awesome, honestly one of my key takeaways is I can do this. Because one of my favorite things about engagement is the relationship building, is the collegiality, is the idea that I, as a researcher, am not expected to, nor do I have to, have any, or all of the answers. It's all about bringing people together and working together to find solutions and come up with ideas. And it sounds like that's universal, regardless of the age that you engage. So thank you so much! And as the season goes on, I'm going to learn more about the different ways through which I will do it. So thanks again, Brianna, Onalee, and Michelle for coming on to the podcast today and helping us begin our journey focused on child, youth and family engagement.
As we wrap, I'd like to take a moment to thank Brianna Kelly and the George and Fay Yee center for Healthcare Innovation, for their help with editing this season's episodes. Next time you're on your phone or at your computer, please check out our website — asperusual.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 our podcast newsletter, as well as to subscribe to the podcast in general through wherever it is that you download your podcast episodes from. This helps other people find the podcast as they're perusing. 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 A-n-n-a C-h-u-d-y-k. Thanks so much for tuning in! And until next time, let's keep working together to make patient engagement in research the standard, or as per usual.