ArticleJMIR research protocols2025
Cancer Care Experiences Among Adolescents, Caregivers, and Health Care Providers in a Regional Canadian Context: Protocol for a Qualitative Study.
Article in JMIR research protocols, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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Abstract
backgroundAdolescents diagnosed with cancer face significant disruptions to their development, education, and social lives. These challenges are pronounced in regional settings, where access to specialized, developmentally appropriate oncology care is limited. In Ontario, Canada, youth aged 12 to 18 years often fall between pediatric and adult care systems, leading to fragmented services, unmet psychosocial needs, and long-term disparities in survivorship. While international literature has examined the cancer experiences of adolescents and young adults, most research originates from the United States, limiting its relevance in the Canadian context. In Ontario's regional hospitals, youth and families face disparities in care quality, specialist access, and logistical challenges. More research is needed to inform equitable, youth-centered cancer care models.
objectiveThis study aims to explore the lived experiences of youth cancer survivors, their caregivers, and health care providers (HCPs) in a regional Canadian context. The study investigates four research questions: (1) What are the daily experiences and psychosocial needs of youth during and after treatment? (2) How do caregivers navigate cancer care for youth? (3) What are HCPs' perspectives on delivering cancer care for youth? (4) What recommendations can youth, caregivers, and HCPs offer to improve cancer care systems for youth?
methodsWe applied a qualitative descriptive design using semistructured web-based interviews and reflexive thematic analysis. Participants were recruited through a multimethod strategy, including clinician referral, posters, digital outreach, and professional networks. The anticipated sample includes 24 participants: 8 (33%) youth cancer survivors (aged 12 to 18 years at diagnosis), 8 (33%) caregivers, and 8 (33%) HCPs. Eligibility criteria were defined to ensure safety, diversity, and relevance. Interviews were conducted via Microsoft Teams, transcribed verbatim, and analyzed using the 6-phase reflexive thematic analysis approach described by Braun and Clarke. NVivo software supported coding and theme development. Demographic data were analyzed descriptively to contextualize the findings.
resultsAs of September 2025, 14 participants had completed interviews: 6 (43%) caregivers, 6 (43%) HCPs, and 2 (14%) youths. Youth recruitment has been challenging due to the developmental stage and competing commitments. Data collection concluded in December 2024. Preliminary transcript coding was completed in early 2025, with final analysis and synthesis of themes completed in June 2025. This study was funded in August 2023, and results are expected to be published in Fall 2025 and Winter 2026.
conclusionsThis study will provide critical insight into cancer care delivery for youth in a regional Canadian setting. Integrating youth, caregiver, and HCP perspectives will illuminate systemic gaps, relational dynamics, and context-specific barriers. The findings will inform policy, education, and service innovations aimed at improving equity, continuity, and developmental responsiveness in oncology care for adolescents and young adults in Canada. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/76877.
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