Identifying gaps and needs in education and career support programs for childhood, adolescent, and young adult cancer survivors: An EU-CAYAS-NET focus group study

Background Advances in cancer treatment have improved survival among children, adolescents, and young adults (CAYAs). However, CAYA cancer survivors are at increased risk of long-term physical, cognitive, psychological, and social consequences of cancer and its treatment, including challenges with educational attainment and employment. Education and career support programs have the potential to improve social participation among this population. Aim The study aim was to identify gaps and needs in education and career support programs for CAYA cancer survivors. The findings are intended to inform the development and refinement of interventions that enhance social participation and quality of life. Methods This study was conducted as part of the European Network of Youth Cancer Survivors (EU-CAYAS-NET) project. A qualitative design was used, involving two focus groups with CAYA cancer survivors in Austria and the Netherlands. Participants were recruited through clinics, patient organizations, and social media. Discussions were audio-recorded, transcribed, and analyzed using thematic content analysis. A brief questionnaire captured demographic and clinical characteristics. Results Eleven survivors participated (Austria: 7; Netherlands: 4), all with experience in education and career support programs. Analysis of 557 codes revealed three main categories: individual behaviors (18%), sociodemographic and health factors (8%), and environmental conditions (74%). Environmental conditions dominated and included the domains infrastructure, support providers, employers, healthcare professionals, and interpersonal relationships. Participants emphasized the need for accessible systems, tailored support, proactive providers, employer engagement, and better integration between stakeholders such as healthcare professionals and vocational services. Conclusion CAYA cancer survivors experience gaps in education and career support. Beyond program availability, clear structures, effective referral pathways, and specialized, coordinated support from multiple stakeholders are needed. Our findings provide implications to guide interventions that improve social participation and quality of life.