Experiences and Unmet Needs of Adolescent and Young Adult Survivors of a Brain Tumor (Aged 15–39 Years)

Abstract

Background Brain tumors account for 15% of all adolescent and young adult cancers, and survivors are at risk of ongoing late effects that can severely impact their ability to reach independence. Despite follow-up initiatives advocating a personalized approach, survivors continue to experience ongoing sequelae. A better understanding of the survivorship experience is required to ensure services are able to deliver personalized support. Objective The aim of this systematic search and meta-ethnography was to identify and synthesize qualitative studies to better understand the experiences, perspectives, and needs of adolescent and young adult brain tumor survivors. Methods Five databases were searched using predefined criteria, studies were independently screened by two researchers, and those meeting inclusion criteria were synthesized. Results Twenty-seven studies were synthesized, generating 2 main themes, each with subthemes: (1) individual factors impacting resilience, namely, positive coping styles, managing emotions, and family functioning, and (2) cancer-related factors that challenge the individual, namely, living with societal expectations and barriers to coping. Conclusion The conceptual framework illustrates the challenges and resilience of survivors along the continuum from adolescence to adulthood, reflecting the needs of this age group in 1 model, despite it being a time of rapid growth. The lack of awareness of potential physical and emotional late effects challenges individual resilience, which is further challenged when significant milestones cannot be reached. Implications for Practice There is a role for follow-up services to identify and address unmet needs, provide better information to equip survivors to manage late effects, and support families, particularly those who underwent more intensive treatment.