Attending to Adolescents' Well-Being During Their Transition off Cancer Treatment: Perspectives from a Nationwide Crowdsourcing Study.

Abstract

Purpose: The experience of cancer during adolescence is particularly challenging given developmental factors during this life stage. Therefore, the transition off cancer care and back to adolescent pursuits requires a developmentally sensitive approach. This study applied the Adolescent Well-Being Framework to qualitative data collected from adolescent and young adult (AYA) cancer survivors and their caregivers to better understand their experiences and needs and to develop recommendations for developmentally appropriate transition care for adolescents. Methods: Researchers partnered with a key informant community advisory board to develop study procedures and recruited participants in partnership with a national nonprofit organization serving caregivers of children with cancer. AYA cancer survivors (N = 30; aged 12-20 years; 53% female) and caregivers (N = 43; 100% female) responded to open-ended questions through an online crowdsourcing platform. Directed content analysis was used to distill themes relevant to fostering adolescent well-being during the transition off cancer treatment. Results: Eight distinct themes mapped onto the five domains of the Adolescent Well-Being Framework and highlight the need to attend to various aspects of adolescent well-being during the transition off cancer treatment, including physical recovery and mental health, connectedness to others, reentry into school and society, developing agency and resilience, and planning for a productive future. Findings informed specific recommendations to improve transition care for adolescents. Conclusion: Attention to the developmental needs and well-being of adolescents, as they end cancer treatment, may ease their transition away from their treatment team and improve engagement in post-cancer care while fostering a developmentally appropriate focus on health, connection, achievement, and resilience.