S3E3 - 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.