Adolescent Cancer Survivors and Their Parents' Experiences With the Transition Off Treatment to Survivorship: A Qualitative Interview Study

J Pediatr Hematol Oncol Nurs. 2024 Apr 24:27527530231214528. doi: 10.1177/27527530231214528. Online ahead of print.

Abstract

Background: Transitioning from active cancer treatment to survivorship represents a vulnerable yet underresearched phase for adolescents and their families. Knowledge of their support needs, the challenges they experience, and how they manage them are useful to inform tailored follow-up care. Thus, we aimed to explore their transition experiences. Method: We interviewed 15 adolescents (12-19 years) who had transitioned off of treatment 1 to 47 months prior at Oslo University Hospital's Department of Paediatric Haematology and Oncology and their biological parents (n = 16). The interviews were analyzed using inductive, reflexive thematic analysis inspired by Braun and Clarke. NVivo-12 was used for data management. Results: Four main themes were identified: (a) consequences of cancer beyond transition, (b) transition back to normalcy, (c) survivorship competence, and (d) changes in roles and relationships. The families described happiness and relief but also said that the lingering effects of cancer treatment had a profound impact on day-to-day living. The adolescents expressed closeness with and dependency on their parents, and they perceived family and friends as essential for social readjustment. Discussion: Although adolescent survivors and their parents described a wide variety of strategies for returning to "normalcy," their perspectives also illustrate ongoing psychosocial and educational support needs that changed over time. Our findings indicate a need for improved preparation for and support through the transition. Nurses are well positioned to provide continuous and structured transition support tailored to the needs of the individual survivors and their families.

Keywords: adolescent(s); oncology; pediatric; qualitative; research; survivorship; transition.