Systems Theory Model to Understand the Barriers and Facilitators to Palliative Care Referral for Pediatric Oncology Patients in Canada

PURPOSE: To explore pediatric oncology and palliative care health care providers' perspectives on the barriers and facilitators to pediatric palliative care (PPC) referral for children with cancer in Canada using a qualitative approach to inquiry. METHODS: Sixty-six health care providers from four tertiary pediatric hospitals across Canada participated in semistructured interviews. Data analysis used the grounded theory method. Data collection and analysis occurred concurrently using an inductive, constant comparative approach. Line-by-line coding guided the development of themes. NVivo software supported data management and coding. Through iterative analysis of the data, a systems theory-informed model of PPC referral was developed. RESULTS: The PPC referral process was best understood as a dynamic system involving four primary agents: oncologists, interprofessional oncology teams, PPC teams, and the patient and family. Each agent's readiness to initiate or accept referral was shaped by emotional, informational, cultural, skill-based, and environmental factors. We identified four distinct referral pathways, ranging from automatic referral at diagnosis to family-initiated referrals. Readiness for a referral emerged as a fluid, systemic state influenced by bidirectional interactions among all agents, rather than a static or solely clinical indicator. CONCLUSION: PPC referral is not a linear decision triggered by disease prognosis or progression alone, but rather a complex and evolving system shaped by interrelated human and organizational factors. Our systems theory model of PPC referral highlights the importance of fostering readiness across the health care team and integrating PPC as a relational and team-based process. These findings offer actionable insights to improve early PPC access and guide the design of interventions.