Cancer Care Experiences Among Adolescents, Caregivers, and Health Care Providers in a Regional Canadian Context: Protocol for a Qualitative Study (Preprint)
Notice bibliographique
Résumé
BACKGROUND Adolescents 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. OBJECTIVE This 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? METHODS We 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. RESULTS As 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. CONCLUSIONS This 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 RR1-10.2196/76877
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Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,032 | 0,021 |
| Méta-épidémiologie (sens strict) | 0,002 | 0,003 |
| Méta-épidémiologie (sens large) | 0,003 | 0,003 |
| Bibliométrie | 0,004 | 0,006 |
| Études des sciences et des technologies | 0,017 | 0,005 |
| Communication savante | 0,006 | 0,003 |
| Science ouverte | 0,005 | 0,005 |
| Intégrité de la recherche | 0,003 | 0,005 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,046 | 0,004 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».