Kaspar Jessen Pedersen1, Kirsten Arntz Boisen1, Julie Midtgaard2,3, Abbey Elsbernd4, Hanne Baekgaard Larsen1. 1. 1 Department of Pediatrics and Adolescent Medicine, Center of Pediatric Oncology, Copenhagen University Hospital Rigshospitalet , Copenhagen, Denmark . 2. 2 The University Hospitals' Centre for Health Research (UCSF), Copenhagen University Hospital Rigshospitalet , Copenhagen, Denmark . 3. 3 Section of Social Medicine, The University Hospitals' Centre for Health Research (UCSF), University of Copenhagen , Copenhagen, Denmark . 4. 4 University of Kansas School of Medicine , Kansas City, Kansas.
Abstract
PURPOSE: An insufficient transition to normal life after cancer treatment in adolescent and young adults (AYAs) may lead to decreased occupational and educational opportunities throughout a survivor's lifespan. Key informant interviews were used to access unique knowledge of the healthcare, educational, and social systems. METHODS: We used key informant interviews with professionals representing disciplines from healthcare, educational, and social systems (n = 15). Informants were recruited through purposive sampling and snowball sampling. Interviews were analyzed thematically using Malterud's Systematic Text Condensation and verified by member checking. RESULTS: We found four major themes: the impact of late effects, navigating the system, social reintegration, and the drive of youth. Although legal frameworks are often in place to assist AYA cancer survivors, navigating the public, educational, and social systems is a complex task and many AYAs do not have the required skill set or energy. Furthermore, AYA survivors often feel different from their peers and misunderstood by their surroundings, which may hinder reintegration into normal social life. CONCLUSIONS: In Scandinavia, healthcare and education are free of charge with equal access for all, primarily funded by government taxes. Therefore, insurance status and tuition fees should not constitute barriers for returning to education and work. However, this study finds that the public and educational systems are complex to navigate, and that AYAs face trouble mobilizing the energy to receive needed support.
PURPOSE: An insufficient transition to normal life after cancer treatment in adolescent and young adults (AYAs) may lead to decreased occupational and educational opportunities throughout a survivor's lifespan. Key informant interviews were used to access unique knowledge of the healthcare, educational, and social systems. METHODS: We used key informant interviews with professionals representing disciplines from healthcare, educational, and social systems (n = 15). Informants were recruited through purposive sampling and snowball sampling. Interviews were analyzed thematically using Malterud's Systematic Text Condensation and verified by member checking. RESULTS: We found four major themes: the impact of late effects, navigating the system, social reintegration, and the drive of youth. Although legal frameworks are often in place to assist AYA cancer survivors, navigating the public, educational, and social systems is a complex task and many AYAs do not have the required skill set or energy. Furthermore, AYA survivors often feel different from their peers and misunderstood by their surroundings, which may hinder reintegration into normal social life. CONCLUSIONS: In Scandinavia, healthcare and education are free of charge with equal access for all, primarily funded by government taxes. Therefore, insurance status and tuition fees should not constitute barriers for returning to education and work. However, this study finds that the public and educational systems are complex to navigate, and that AYAs face trouble mobilizing the energy to receive needed support.
Entities:
Keywords:
education; psychosocial; return to work; survivorship