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Experiences of Adolescents and Young Adults in Regional Cancer Care Systems: A Qualitative Study
ABSTRACT
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.
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.