JMIR Publications

ABSTRACT

Background:

Adolescents diagnosed with cancer face significant disruptions to their development, education, and social lives. These challenges are amplified in regional settings, where access to specialized, developmentally appropriate oncology care is limited. In Ontario, youths aged 12–18 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 adolescent and young adult (AYA) cancer experiences, most research originates from the United States, limiting its relevance in the Canadian context. In Ontario’s regional hospitals, disparities in care quality, access to specialist services, and logistical burdens (e.g., travel for treatment) further complicate cancer care for youth and their families. There is an urgent need for Canadian, context-specific research to explore how cancer care is delivered and experienced in regional settings and to identify opportunities for more youth-centred, equitable care models.

Objective:

This study aims to explore the lived experiences of youth cancer survivors, their caregivers, and healthcare 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 youth cancer care? (4) What recommendations can stakeholders offer to improve cancer care systems for youth?

Methods:

A qualitative descriptive design was employed using semi-structured virtual interviews and reflexive thematic analysis. Participants were recruited through a multi-method strategy, including clinician referral, posters, digital outreach, and professional networks. The anticipated sample includes 24 participants: eight youth cancer survivors (aged 12–18 at diagnosis), eight caregivers, and eight HCPs from Windsor Regional Hospital. Eligibility criteria were defined to ensure safety, diversity, and relevance. Interviews were conducted via Microsoft Teams, transcribed verbatim, and analyzed using Braun and Clarke’s six-phase reflexive thematic analysis approach. NVivo software supported coding and theme development. Demographic data were analyzed descriptively to contextualize findings.

Results:

As of December 2024, 14 participants have completed interviews: six caregivers, six HCPs, and two youths. Youth recruitment has been challenging due to the developmental stage and competing commitments. Preliminary transcript coding is complete, and theme refinement is underway. Final analysis and synthesis of themes across stakeholder groups are anticipated by June 2025.

Conclusions:

This study will provide critical insight into youth cancer care delivery in a regional Canadian setting. Integrating youth, caregiver, and provider perspectives will illuminate systemic gaps, relational dynamics, and context-specific barriers. Findings will inform policy, education, and service innovations aimed at improving equity, continuity, and developmental responsiveness in Canadian AYA oncology care.