"I am so grateful you made me do this": Navigating AYA-Caregiver Discordance on Shared Decision-making about...

As survival rates improve for adolescents and young adults (AYAs) with cancer, understanding barriers to fertility preservation (FP) decision-making has become increasingly important. FP decisions involve both AYAs and caregivers, yet discordance in fertility goals is common and may hinder FP utilization. The factors contributing to discordance and its impact remain underexplored. This study used the Ottawa Decision Support Framework (ODSF), which identifies essential medical decision-making needs and categorizes barriers into 7 domains, to examine the experiences of discordance in FP decision-making.

Semi-structured qualitative interviews were conducted with AYA-caregiver dyads who experienced discordance during FP decision-making. Participants were aged 12-25, were ≥6 months post-cancer diagnosis, read and spoke English, and were at risk for infertility due to gonadotoxic therapy. Interviews were conducted via ZOOM between July 2024 and January 2025. Data analysis used a content analysis approach guided by existing theory and the ODSF.

Caregivers emphasized accurate information, AYAs' maturity, and seeking external advice, whereas AYAs had greater difficulty with internal confidence and decision-making uncertainty. Caregivers often assumed directive roles due to treatment urgency and perceived AYA immaturity. AYAs, despite valuing autonomy, deferred to caregivers due to emotional distress and limited knowledge.

The ODSF-guided analysis revealed several sources of discordance, though none led to FP refusal. Structured counseling mitigated decisional conflict, and all participants expressed decision satisfaction. The findings support structured counseling to align AYAs' autonomy with caregiver support. Future studies should include more diverse sociodemographic, multi-institutional samples and the perspectives of those who declined FP.