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Abstract

Survivors of pediatric cancer are at risk for late effects and require risk-adapted long-term follow-up (LTFU) care. Yet less than 50% of survivors attend LTFU care. This study aimed to identify barriers and enablers of engaging with LTFU care as perceived by Canadian survivors of pediatric cancer and healthcare providers (HCPs). Survivors (n = 108) and HCPs (n = 20) completed surveys assessing barriers and enablers to attending LTFU care, summarized using descriptive statistics. Participants were invited to participate in survivor focus groups (n = 22) or HCP semi-structured interviews (n = 7). These were analyzed using reflexive thematic analysis and the Capability, Opportunity, and Motivation for Behaviour Change (COM-B) model, which explores how an individual’s capability, opportunity, and motivation influence a target behaviour. Structural barriers, transitioning from pediatric to adult care, and time constraints were highlighted as barriers that affect survivors’ physical opportunity to engage in LTFU care. Accessibility, financial support, HCPs and family support, and community resources were highlighted as enablers that better survivors’ physical and social opportunity to engage in LTFU care. In conclusion, Canadian survivors of pediatric cancer highlighted barriers that limited their physical opportunity to attend LTFU care, while factors that enhanced their physical and social opportunities facilitated greater engagement with LTFU care.