"I have to do things differently now, but I make it work"-young childhood cancer survivors' experiences of self-management in everyday living

Abstract

Purpose: Living with late effects can affect young childhood cancer survivors' (CCSs) self-management (SM) abilities. In this study, we explored different approaches to SM of everyday life by young CCS.

Methods: This is a sub-study of a larger study on Physical Activity among Childhood Cancer Survivors (the PACCS study). We conducted individual interviews with 22 CCS aged 9 to 18 years who were at least 1 year off-treatment. An hybrid inductive-decductive thematic analysis was used.

Results: Three main themes were identified: (1) managing everyday life with fatigue, (2) building self-management competence, and (3) cancer survivor as part of identity. Late effects, especially fatigue, contributed to a perceived ability gap compared to peers, limiting participation in everyday activities. CCS developed new SM skills to overcome such challenges and pushed themselves physically and mentally to master and balance activities and rest to regain energy. CCS changed activities, adapted their expectations, or legitimized their apparent lack of SM skills to regain a sense of self-efficacy. Managing the impact of cancer on relationships with family and friends also required use of SM strategies.

Conclusions: The findings expand our currently limited knowledge of young CCS and SM skills they develop to manage everyday life after treatment completion. These, combined with ongoing support from family and peers, "make it work".

Implications for cancer survivors: The perspectives of young CCS illustrate their SM skills and support needs beyond transitioning off-treatment. Conceptualizing this within follow-up care may contribute to a feeling of mastery and increased satisfaction among CCS.

Keywords: Cancer; Childhood cancer survivors; Late effects; Oncology; Qualitative interviews; Self-management.