Lived Experience of Treatment-Related Late Effects After Childhood and Adolescent Cancer

BACKGROUND: As the number of childhood and adolescent cancer survivors increases, deeper insight into their lived experiences of daily life after cancer with late effects becomes fundamental to provide tailored care. PURPOSE: To describe the lived experience of treatment-related late effects in the daily lives of childhood and adolescent cancer survivors. METHODS: We performed a secondary analysis of four online focus groups with childhood and adolescent cancer survivors and of complementary documents, that is, a book and documentary. The transcripts and documents were thematically analyzed in Atlas.ti informed by the interpretative phenomenological analysis approach. Themes were discussed and categorized in collaboration with survivors, researchers, late effects specialists, and a psychologist. RESULTS: Twenty-two childhood cancer survivors (aged 13-51 years) participated in the focus groups, and 32 childhood cancer survivors (aged 22-69 years) participated in the book and documentary. We grouped the results in two themes: an inner and a relational lived experience. As for the inner lived experience, daily life with late effects encompasses both benefits and burdens. In relation to the relational lived experiences, daily life is shaped by experiences of misunderstanding and understanding. CONCLUSION: Being aware of the co-existence of an inner lived experience, encompassing both benefits and burdens, and a relational lived experience, shaped by experiences of understanding and misunderstanding, in the daily life of survivors of childhood and adolescent cancer can help to communicate experiences of survivors in long-term follow-up care and supports to actively foster peer support among survivors.