Families navigate fragmented healthcare and education systems while managing invisible labour that systems and professionals often don't recognize: coordinating care, translating information across sectors, and advocating for their children's needs. In this episode, researchers, a clinician, and parent partners discuss how lived experience must become integrated expertise driving system change, not just testimony, and how meaningful family participation in co-design creates solutions that actually work. The conversation highlights that building continuity across sectors and empowering families is essential to creating systems that serve children and youth with disabilities across their lifetimes.
Listen or watch episode 3 now!
Speakers:
Dr. Stephanie Glegg - Assistant Professor, Faculty of Medicine, Department of Occupational Science and Occupational Therapy, The University of British Columbia; Scientific Co-Director & Co-Lead, Knowledge Mobilization Program, CHILD-BRIGHT SPOR Network
Stephanie Glegg is a pediatric occupational therapist and implementation scientist. She studies the best ways to move knowledge into action to improve health care services, systems and outcomes. Her research aims to make practical changes that enhance the experiences of children/youth, families and health care providers, and to support informed health care decision-making based on research, lived experience, clinical experience, and other ways of knowing and being. She partners with children/youth, families, community organizations, health professionals, decision-makers and others, whose involvement throughout the research process drives meaningful change from diverse perspectives. She also co-leads the CHILD-BRIGHT Network Knowledge Mobilization Program (www.child-bright.ca) and leads the network's Clinician Hub. Her family includes her husband, kids, and a pandemic pup named Rolo. If she weren't a researcher, she'd be a pastry chef. In her spare time, she plays her 272-year-old cello with fellow musicians.
Jessica Green - Parent Partner with Parent Voices/CHILD-BRIGHT
Jessica Green is a parent partner-based in Whitehorse, Yukon. Speaking from lived experience as a mother navigating complex developmental, health, educational, and community systems alongside her son, her work explores participation, belonging, caregiver wellbeing, and the relational realities families encounter across childhood and development. Through advocacy and collaboration with family-partnered research initiatives, Jessica has become increasingly interested in how families experience the spaces between systems, and how lived experience functions not only as personal perspective, but as valuable systems knowledge. She is particularly drawn to conversations about meaningful participation, relational continuity, implementation, and the everyday conditions that allow children and families to flourish within their communities. Jessica brings a thoughtful, family-centered lens to conversations about disability, development, and systems change, grounded in the belief that belonging emerges through relationship, responsiveness, and environments willing to evolve alongside children and families.
Dr. Thuy Mai Luu - Staff pediatrician, Division of general pediatrics; Full professor, Faculty of medicine, Université de Montréal; Clinical scientist, CHU Sainte-Justine Research Center
Thuy Mai Luu is a pediatrician at CHU Sainte-Justine in Montreal and a full professor in the Department of pediatrics at Université de Montréal. She received her MD from McGill University and pediatric degree from Université de Montréal. She then pursued her training at Brown University to gain clinical and research knowledge in developmental follow-up of high-risk newborns. She also completed a Master’s degree in epidemiology and biostatistics at McGill University. She is the director of the Canadian Neonatal Follow-Up Network, a research network including the 26 neonatal follow-up programs across Canada. Her research focuses on long-term neurodevelopmental and physical health outcomes following preterm birth, from infancy to adulthood, looking at risk and resiliency factors along with best screening strategies to enhance clinical follow-up.
