The evolving landscape of pediatric palliative care in Canada: a qualitative descriptive study

Over the past 40 years, pediatric palliative care (PPC) in Canada has expanded, yet remains constrained by gaps in access. Infants, children, and youth are significantly underserved, and specialist-level care remains inequitably distributed with programs across the country being few and far between. To help inform health service planning and delivery, this study aimed to describe the evolution and current state of PPC in Canada. A qualitative descriptive study was conducted involving surveys, a document analysis, and interviews with representatives from all seventeen specialized PPC programs in Canada (hospital-based, hospice-based, and combined programs). Data was analyzed thematically using Braun and Clarke’s reflexive framework. Many PPC programs across Canada started with dedicated clinicians and families who recognized that the children they were caring for were dying without the support they needed. However, as one participant described, building these programs “was always a fight,” and today it is still a fight. At present, participants spoke of the chronic burden of defining and advocating for PPC, the fragility of programs due to funding precarity, the unique challenges of caring for children and families across a vast Canadian geography, and the value of building spaces of expertise. Moving forward, participants described the necessity for greater capacity building through, for example, education and collaboration. While there has been important growth in Canadian PPC over the past four decades, progress has been slow and faced with compounded barriers. Looking to the future, emerging collaborations mark the potential starting point for a new chapter of strengthened, sustainable, coordinated services, yet these demand intentional commitment and collective action.