Episode summary
In this onePERspective episode of asPERusual, we pass the mic from long-time patient partner Kathy Smith to new guest host Sasha Kullman — a doctoral trainee exploring how to meaningfully engage children, youth, and families in research. Sasha shares thoughtful, personal reflections on Season 3, Episode 3, which featured Brianna Hunt, Michelle Roy, and Onalee Garcia-Alecio in a powerful conversation about youth and family engagement in the iCARE study.
As a researcher stepping into pediatric-focused engagement work for the first time, Sasha brings a fresh and deeply introspective learner’s lens to this conversation. She reflects on what it means to create safe, youth-led spaces in research, the importance of honoring lived/living experience, and how small actions — like starting with a genuine smile — can lay the foundation for authentic relationships.
This episode invites listeners to rethink traditional research values, reflect on the role of trust and flexibility in engagement, and consider how we might measure research impact not just by outputs, but by the relationships we build and the communities we support. If you’re a researcher, student, or someone with lived experience interested in more meaningful engagement — this episode is for you.
👉 Tune in and reflect with us: How can we build a research culture that truly centers people?
Meet our guest listener
Sasha Kullman: Sasha is a PhD student in the College of Pharmacy at the University of Manitoba, supervised by Dr. Anna Chudyk. She holds a master’s degree from the Faculty of Kinesiology and Recreation Management at the same institution, where her research focused on health psychology, health promotion, and patient engagement in research. Funded by a CIHR Canada Graduate Scholarship, Sasha’s doctoral work continues to center on participatory approaches, involving patients and their families in research designed to enhance healthcare experiences.
Episode Transcript:
Anna Chudyk:
Hi everyone! Welcome to onePERspective — a bi-weekly segment where a featured guest shares their key reflections from the most recent episode of asPERusual, the podcast all about practical patient engagement in research. I’m your host, Anna Chudyk.
If you’ve been tuning in for a while, you’ll know that onePERspective was originally created and led by Kathy Smith, a long-time patient partner I’ve had the pleasure of working with from Thunder Bay, Ontario. With the podcast now shifting its focus toward child, youth, and family engagement — and with Kathy juggling a very full schedule — she’s decided to pass the mic, at least for now.
So today, I’m excited to welcome Sasha Kullman as our new onePERspective host. Sasha is a doctoral trainee working under my supervision on a project focused on engaging children, youth, and families to help redesign specialist care for people living with congenital heart disease. As part of this work, she’s shifting her usual focus on adult engagement into the pediatric space — which brings a really valuable learner’s lens to these conversations.
Welcome, Sasha! Tell the listeners a bit about yourself and then let’s hear your reflections on Season 3, Episode 3 of asPERusual.
Sasha Kullman:
My name is Sasha Kullman, and I am a PhD student in the College of Pharmacy at the University of Manitoba. And I consider myself very lucky because Anna is my supervisor. I’ve been following the asPERusual podcast since season 1. So when the opportunity came up to potentially be a guest, said 100% yes please sign me up that is awesome.
I started my research journey in 2019 as an undergraduate student working in health promotion and health psychology. My interest in patient oriented research was sparked in 2022 during my master’s degree when I took a course taught by Anna on patient engagement in research. She subsequently joined my master’s thesis advisory committee, and afterwards took me on as a PhD student. The work that I’ll be doing with Anna as part of my doctoral research will be engaging with youth and families living with congenital heart disease. So naturally I was really excited to listen and comment on my key takeaways from our last podcast episode.
To recap, last week’s episode was the kick-off to a series on engaging children, youth, and families in research. And we had the chance to hear from three wonderful guests: Brianna Hunt, who is a Patient Engagement Coordinator from the Children’s Hospital Research Institute of Manitoba, along with Michelle Roy, a parent advisor for the iCare study, and Onalee Garcia-Alecio, a youth advisor from the iCare study. Together, they reflected on their experiences with youth and family engagement.
As a research trainee, and someone who is hoping to engage with youth and families in my own work, this episode really resonated with me. Like Anna, almost all of my past engagement activities to date have been with adults, and working with youth is something new to me. I think there are different relationships, communication styles, power dynamics, and considerations for creating safe spaces when working with youth that are so important to consider. And I was entering this new phase of engaging with youth and families with excitement and some nerves too. The opportunity to hear from some folks who are embedded in the youth and family engagement community, and come away from the episode with those practical recommendation helped me feel more confident entering into this next chapter of research engagement experiences.
But going beyond just talking about the content of the episode a few really powerful points resonated with me that I wanted to share today.
Topic 1. Reasons for engagement
When Onalee and Michelle talked about the reasons for becoming youth and family partners and engaging in the iCARE study, they described turning the difficult situation of a Type II diabetes diagnosis into something more positive – an opportunity to learn, to help others, and to build new connections. This is a common theme I’ve heard from many of the patient partners or people with lived experience that I’ve gotten to work with over the last few years – that notion of taking a challenging situation, and finding this driving force within it, trying to help make outcomes and experiences better for others in the future. I think that motivation really speaks to the altruism embedded within the patient, youth, and family engagement community, and the respect that their engagement deserves.
This idea also connects to the importance of fair compensation that was discussed in the episode. I think as a researcher in training, something that I always want to be top of mind in my future career is that patient, youth, and family partners bring their lives into the research process through their lived expertise. And that expertise, along with the difficulties they may have experienced to gain it, should be compensated for in a way that shows respect for their contributions, fits their needs and preferences, and follows best-practice guidelines.
Topic 2. Getting youth and families on board
We also heard from Onalee, Michelle, and Brianna about how we can create research spaces that are safe, youth-centric, welcoming, and comfortable for them to share. I loved Michelle’s suggestion of just starting with a smile and building relationships from there. And that’s something that is really going to keep me grounded in the work that I do moving forward. Just letting the people I engage with know that I am happy to see them, that I am glad they are there and that I want to get to know them. It is was so validating to hear the guests say the time we spend building relationships is time well spent, because it’s true – that time is so important and sets the tone for the rest of the project.
Even as a student, I think it can be easy, in the world of academia, to think about projects, timelines, productivity, efficiency, to the point where we might be lost in thought a million miles away from the present moment or try to rush relationship building. I think some of that has to do with how we are trained, or maybe academic culture. And that tendency can be an advantage in some situations in the academic world. But in other situations, maybe less so. For me, I’ve sometimes wondered if all that emphasis on thinking in our academic work can lead us away from knowing how to BE and to FEEL and how to stay present in the moment in our work, because that’s where relationship building happens. I think Michelle’s suggestion was a great reminder to be authentic, smile, and remember why we are doing this work in the first place – it is often because we love it! And that will shine through and be clear to others. Like Brianna said, youth can tell from a mile away when we aren’t being genuine.
Topic 3: Considering the Youth Perspective
I also appreciated the nuanced conversation about creating spaces that are comfortable for youth, and that a comfortable situation might look different from person to person, and might differ between age groups as well. Something that I hope to avoid doing in my own work is engaging youth as though they are just small adults, and assuming the usual icebreakers and relationship-building activities I do with adults work just as well with youth. We learned from the last episode that different approaches are needed to create a youth-centric engagement space, and it seems like the best place to start is just asking the youth on your team what works best for them.
Something that stuck with me was Onalee’s story about how the iCARE team asked the youth advisory members of the study if they are comfortable, and then asked them how they could be MORE comfortable. To me, it seemed like doing that showed the youth on the team that they were prioritized and that they could be honest. And maybe this hit home so strongly for me because I am a young person too, and I have fairly recent memories of being a young person in situations with power differentials where I didn’t feel seen or heard. I actually googled the age cut-off for “youth” before this episode and I found out I left the youth age bracket just about a year ago. So as I move into this role of engaging youth and families, I want to be a facilitator like the ones in the iCARE study who creates spaces where youth can lead the way and share openly and honestly. When we get together, I want them to know that they know that they are seen, heard, and valued by our research team.
PERsonally Speaking
Just as Kathy did in previous seasons, I wanted to close out with a point to ponder. Throughout the last episode, our guests really emphasized the importance of flexibility, building trust, creating welcoming spaces, taking time to build relationships, and embracing the fact that expertise does not just stem from advanced degrees. These are all important lessons I’ve been learning throughout my time as a research trainee involved in patient-oriented research. When we talk about these qualities that contribute to strong research engagement experiences, they are often framed in a way that encourages researchers to rethink the ways they have traditionally approached research, or unlearn the thought patterns that have kept academic research locked in an ivory tower. But what if these qualities were re-framed as the standard of doing research that we taught to all students at the outset of their research training, and what if these qualities were more frequently recognized and rewarded by our academic institutions. What if our performance wasn’t just measured in research outputs, grants awarded, or publication metrics. What if it was also measured in the relationships we build and the collective impacts we made with our community partners? And what, if anything, can we do in our own work that brings us a little closer to that possibility? As a PhD student, that’s something I’m trying to discover for myself, and I’ve been lucky to have the guidance of my supervisor Anna and some wonderful patient and family partners along the way.
Anna:
Thanks so much, Sasha! I always love listening to your reflections on anything that we do together. Something that always comes through really clear is your unique ability to blend both your intellect with your heart center, which is really where a lot of engagement lies. I can't wait for you to keep going with future onePERspective episodes.
In the next full episode of asPERusual, I sit down with Angie Hamson, Family Engagement Specialist at the Knowledge Institute on Child and Youth Mental Health and Addictions. We’ll talk about her one-of-a-kind journey as a patient partner — from volunteer to professional roles — and all the lessons she’s learned along the way about engaging children, youth, and families in research and healthcare organizations. You won’t want to miss it.
In the meantime, head over to our website at asperusual.substack.com where you can find previous episodes, check out interactive transcripts, and subscribe to our newsletter. And if you haven’t already, please subscribe to the podcast, and leave a positive review, wherever you like to listen — it really helps others find us too.
You can always reach me directly at anna.asperusual@gmail.com, or connect with me on LinkedIn by searching for Anna M. Chudyk — that’s C-H-U-D-Y-K. You can add Sasha to LinkedIn my searching for Sasha Kullman - K-U-L-L-M-A-N.
Thanks again for listening — and until next time, let’s keep working together to make patient engagement the standard… or asPERusual.
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