Development of Educational Guidance Sessions for Adolescents and Young Adults With Cancer and Their Caregivers: A Component of the AYA-NAV Intervention.

ObjectivesAdolescents and young adults (AYAs) with cancer often experience educational and vocational challenges that hinder long-term developmental goals and milestones. While more attention has been paid to addressing employment-related needs, little research has focused on identifying and addressing educational needs during or after treatment for AYAs with cancer, particularly younger AYAs, who rely on caregivers for educational support and guidance. We report our process for developing and refining an educational guidance session for caregivers of AYAs with cancer.MethodsGuided by an extended Social Determinants of Health framework, we developed a standardized process to identify and address educational needs reported by caregivers of AYAs with cancer. Key stakeholders were consulted at multiple stages of development, and the process included a prescreening tool, guidance session, and curated resource list. During beta testing, formative guidance sessions were conducted with caregivers, followed by one- and three-month follow-up check-ins to collect feedback and refine the intervention.ResultsDuring beta testing, we pre-screened caregivers of 16 AYAs (ages 12-20 years; M = 16.31; SD = 2.18). Thirteen caregivers screened positive and were eligible for the guided session; 11 reported their AYA had unmet educational needs. Reported concerns were clustered into three domains: school enrollment, learning support, and school-related financial barriers. Most participants reported sessions were helpful and appreciated personalized resources. Preferences varied by depth and frequency of support, underscoring the need for flexibility in delivery and resulted in a standard, yet tailorable slide for future guidance sessions.ConclusionThis caregiver- and patient-informed intervention addresses a critical gap in AYA cancer care by identifying and responding to educational needs. The structured guidance model is more inclusive of educational needs specific to younger AYAs and caregiver support and thus integrated as a component of an AYA needs navigation program (AYA-NAV).