Experiences of Adolescents and Young Adults in Regional Cancer Care Systems: A Qualitative Study (Preprint)

BACKGROUND Adolescents and young adults (AYAs) with cancer encounter fragmented systems that often overlook their developmental and psychosocial needs. In Ontario, regional programs are expected to provide accessible care but frequently lack coordinated services, psychosocial and survivorship supports, and stable workforce capacity, leaving care dependent on individual providers. OBJECTIVE To examine how adolescents and young adults with cancer, caregivers, and healthcare providers experience regional cancer care, focusing on coordination, access, and developmental fit. METHODS This is an exploratory qualitative study. Participants were recruited through purposive sampling between July 2024 and March 2025 from Southwestern Ontario. Semi-structured interviews explored experiences across the cancer continuum with adolescents and young adults (aged 15-18 at diagnosis), their caregivers, and healthcare providers. Data were analyzed using reflexive thematic analysis, supported by NVivo. Trustworthiness and credibility were strengthened through reflexive team discussions and audit trail documentation. RESULTS Six key themes were generated: 1) structural gaps in coordinated care, 2) reliance on individual champions, 3) developmental and environmental misalignment, 4) barriers to youth engagement and autonomy, 5) gaps in psychosocial, palliative, and survivorship support, and 6) local system enablers. Participants described fragmented communication, inadequate training, and settings poorly suited to adolescent and young adult needs. Care continuity often relied on individual providers, while families bore the burden of navigating disconnected systems. Local supports, such as satellite clinics and community organizations, helped fill critical gaps. CONCLUSIONS Regional adolescent and young adult cancer care remains inadequate and developmentally misaligned. Addressing these challenges requires system-level reform to embed youth-centered, trauma-informed, and equitable care across all settings. INTERNATIONAL REGISTERED REPORT RR2-10.2196/76877