Perspectives of Adolescents and Young Adults, Caregivers, and Health Care Providers on Regional Cancer Care: Qualitative Study

TL;DR

This study explores how regional cancer care in Ontario meets the unique needs of adolescents and young adults, identifying structural barriers and potential improvements.

Contribution

The study provides new insights into the experiences of youth, caregivers, and providers in regional cancer care systems, emphasizing developmental and psychosocial needs.

Findings

Regional cancer care systems often lack coordinated, developmentally appropriate support for adolescents and young adults.

Participants highlighted reliance on individual champions rather than structured systems to address youth needs.

Local satellite clinics and community organizations help reduce travel and provide long-term support for patients and families.

Abstract

Adolescents and young adults with cancer have distinct developmental and psychosocial needs that require care models bridging pediatric and adult oncology systems. While survival outcomes have improved, there is growing recognition of the need to strengthen coordinated care, psychosocial support, and survivorship services. In Ontario, regional and community-based cancer programs play a central role in delivering accessible care and are well-positioned to support adolescents and young adults closer to home. However, variation in infrastructure, workforce capacity, and system-level coordination influences how developmentally appropriate oncology care is implemented. Existing literature has focused on tertiary and specialty centers, highlighting the need to leverage and strengthen regional systems, providers, and community resources to support high-quality adolescent and young adult cancer care.

This study aimed to explore how structural barriers and supports shape the experiences of adolescents and young adults with cancer, their caregivers, and health care providers (HCPs) in accessing and navigating regional cancer care in Ontario.

An exploratory qualitative study was conducted between July 2024 and March 2025, guided by Bronfenbrenner’s Ecological Systems Theory and a social constructionist orientation. Semistructured interviews were conducted with 14 participants (adolescents and young adults, caregivers, and HCPs) in Southwestern Ontario. Participants were recruited through purposive sampling. Data were analyzed using reflexive thematic analysis. Trustworthiness and rigor were strengthened through reflexive team discussions and audit trail documentation.

A total of 2 adolescents and young adults, 6 caregivers, and 6 HCPs were interviewed. Youth were in their early 20s and represented different cancer diagnoses. Most caregivers (n=5) were mothers, and HCPs had 2-20 years of experience. 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 care poorly suited to adolescents’ and young adults’ needs. Care environments often defaulted to child- or adult-oriented models, limiting autonomy and engagement. Psychosocial, palliative, and survivorship supports were unevenly available, particularly during transitions off treatment. Despite these challenges, local satellite clinics and community organizations reduced travel burden, fostered continuity, and provided long-term emotional and financial support.

Adolescent and young adult cancer care in regional settings is delivered within evolving systems adapting to youth’s developmental and psychosocial needs. Our findings suggest that targeted investments in workforce development, coordinated communication structures, and age-appropriate care models can further enhance regional capacity to support adolescents and young adults across the cancer trajectory. By shifting from reliance on informal solutions toward more structured, team-based approaches, regional programs can build resilient, youth-responsive systems that promote high-quality, equitable adolescent and young adult cancer care.

RR2-10.2196/76877