A conceptual model of cancer care and lived experiences in adolescents and young adults with cancer: results from the multi-national European STRONG AYA project

Abstract Purpose Adolescents and young adults (AYAs, 15–39 years) with cancer face unique medical, psychosocial and developmental challenges. Existing conceptual models help explain AYA cancer experiences but are often limited by age or national context. The aim of this study was to develop a comprehensive conceptual model reflecting the diversity and complexity of AYA cancer experiences across Europe. Methods Within the STRONG AYA project, an exploratory qualitative study was conducted. Fifty-two semi-structured online interviews were completed with AYAs with lived experience of cancer and healthcare, allied health and other professionals involved in AYA cancer care, from European countries. Participants were asked about outcomes most important to AYAs. Data were analysed thematically, and the resulting themes informed a conceptual model. Results Four themes were identified: (1) healthcare delivery, access, quality of care and navigation, (2) economic instability and hardship in the cost of survival, (3) fertility and family planning: inequalities in counselling and preservation access and (4) liminal survivorship and societal reintegration. The model encompasses the following cross-cutting domains: structural/contextual factors (healthcare systems, policies, societal and cultural influences), mediators (information access, social support, financial coverage), processes (delayed decisions, fragmented care) and individual AYA outcomes (mental/physical health, identity, autonomy, education/work trajectories, relationships). Conclusions This conceptual model highlights how AYA cancer experiences/outcomes are shaped and influenced by interacting structural, societal, country-level factors, healthcare systems, cultural contexts and policies across settings. This model may be used to further develop and test culturally sensitive AYA-specific assessments/tools and interventions to improve care and support.