Advancing Youth Engagement in Pediatric Palliative and End-of-Life Care Policy and Practice

Title: Advancing Youth Engagement in Pediatric Palliative and End-of-Life Care Policy and Practice 

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Description: This study represents a four-year national participatory research project that examines how children and youth with life-limiting illnesses can be more meaningfully engaged in pediatric palliative and end-of-life (P-EOL) care decisions and the institutional policies that shape those decisions. Grounded in the principles of Childhood Ethics and critical policy analysis, the project addresses significant gaps in understanding how young people are currently involved in decisions affecting their care, how they wish to be involved, and how healthcare institutions can better support their participation.

The study is organized around three objectives: understanding current approaches to youth engagement in pediatric P-EOL care across Canada; examining how institutional policies and practices align with young people’s preferences for participation; and collaboratively developing evidence-informed recommendations to strengthen youth engagement in policy and clinical practice. A Youth Advisory Steering Committee and youth co-researchers will play central roles throughout the project. Using a combination of national surveys, policy analysis, ethnographic observations, and arts-informed interviews conducted across pediatric hospitals and hospice settings in Halifax, Toronto, and Vancouver, the research will generate national evidence to guide policy and practice change.

Working alongside young people, families, healthcare providers, administrators, and policy makers, the project will produce policy briefs, youth-led knowledge forums, podcasts, and other accessible knowledge mobilization resources. By embedding youth perspectives into institutional decision-making, the project aims to establish a new national paradigm for authentic and meaningful youth engagement in pediatric palliative and end-of-life care.

Funding: The project is supported by a Canadian Institutes of Health Research (CIHR) Project Grant with $760,000 in funding.