Beyond the Hospital: Understanding Psychosocial Support Uptake for Adolescents and Young Adults With Cancer in Community-Based and Nonprofit Programs.
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IntroductionAdolescents and young adults (AYAs) with cancer experience substantial psychosocial distress, yet participation in supportive oncology services remains low. Community-based and nonprofit programs outside hospital systems provide essential developmentally appropriate supportive care, particularly during transitions to surveillance and longer-term follow-up, yet determinants of uptake in these settings are understudied. We examined program leaders' perspectives on participation gaps and strategies to strengthen equitable engagement beyond the hospital.MethodsWe conducted a qualitative interview study using semi-structured interviews with leaders of community-based and nonprofit AYA psychosocial support programs in the United States and Canada (N = 21). A structured environmental scan and expert verification yielded a 132-program sampling frame; 33 organizations expressed interest. Interviews were analyzed using the Framework Method, organized deductively with the Social Ecological Model and the Theoretical Domains Framework and refined inductively. Transcripts were double-coded, and themes were developed through team consensus.ResultsLeaders described multilevel determinants of uptake, including fragmented referral pathways, limited organizational capacity and program visibility, stigma and safety concerns, and misalignment between program structures and early adulthood realities. Timing was a cross-cutting determinant: engagement was described as least feasible during intensive treatment and especially vulnerable at transitions such as treatment completion and early survivorship, when routines shift and clinical contact decreases. A central finding was wide variability in sociodemographic data collection. Many programs did not routinely collect participant sociodemographic information, limiting their ability to identify representation gaps and tailor outreach. Leaders prioritized strategies including ethical sociodemographic data collection, trust-based community partnerships, clinician-facing referral workflow supports, and shared infrastructure for repeated needs assessment and resource matching.ConclusionLow participation was shaped by implementation conditions, not individual disinterest. Improving equitable uptake may require investments in referral and re-referral workflows across care transitions, equity-monitoring infrastructure, and community-embedded approaches that build trust and improve discoverability beyond the hospital.