“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.

Sobrevivência aos Cânceres Ósseos e Reinserção Social

“…As dúvidas sobre a vida vindoura, ou mesmo se haverá vida, o temor quanto ao desenvolvimento de novos tumores, a insegurança quanto aos relacionamentos amorosos, a vulnerabilidade quanto a constituir família. Enfim, predomina a sensação de impotência para planejar uma "vida dita normal", cuja ameaça traduz-se pelas indefinições quanto a um futuro que se manifesta em um presente urgente, na forma de indagações sem respostas imediatas, abrindo um vácuo existencial 7,[37][38][39][40][41] .…”

The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) Study: Protocol for an International Mixed Methods Study

“…Data from the patient and parent interviews have been analyzed and are currently being written for publication. A total of 2 articles have been published as of January 2022 [ 81 , 82 ], and 2 more are under preparation for publication. Data from interviews with local stakeholders are currently being analyzed, and 1 article is planned.…”

And what about today? Burden and support needs of adolescent childhood cancer survivors in long‐term follow‐up care—A qualitative content analysis

“…In the context of childhood cancer survivorship, promoting self‐management strategies (like adopting a healthy lifestyle, using social support, and creating a healthy environment) becomes crucial. These strategies can ensure independent LTFU care, help in managing psychosocial burden, and optimize long‐term quality of life (Brown et al, 2021; Larsen et al, 2022). Additionally, empowering parents to support their children during this period of life, fostering autonomy, becomes crucial.…”