Perspectives of Adolescents and Young Adults, Caregivers, and Health Care Providers on Regional Cancer Care: Qualitative Study (Preprint)
Bibliographic record
Abstract
BACKGROUND 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. OBJECTIVE 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. METHODS 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. RESULTS 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. CONCLUSIONS 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. INTERNATIONAL REGISTERED REPORT RR2-10.2196/76877
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.005 | 0.006 |
| Meta-epidemiology (narrow) | 0.000 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.009 | 0.005 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.003 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".