Living with sarcoma in childhood: an indepth qualitative exploration of psychosocial factors.

Abstract

Sarcomas are cancers of connective tissue and account for approximately 10-15% of all cancer cases in children aged ≤16 years. Treatment often involves chemotherapy, surgery and radiotherapy. The disease and the side-effects of treatments can adversely affect patients and their families' health-related quality of life (HR-QoL). Poorer HR-QoL is reported compared with other cancers; however, these studies are limited to generic cancer QoL measures. This qualitative study explored the psychosocial impact of sarcoma on children affected by sarcoma and their parents. Nine children (aged 8-16 years) and 12 parents from three UK Principal Treatment Centres participated in semistructured interviews based on the core domains of HR-QoL. The interviews were recorded, transcribed verbatim and analysed using thematic analysis. Six themes were identified from the analysis, mapping the journey from symptom onset and diagnosis to treatment experience and the lasting effects of living with sarcoma. The themes included: (1) experience of diagnosis; (2) consequences of treatment; (3) impact on family; (4) support systems; (5) disability and inclusion; (6) finding a way forward. The study's findings illustrate a marked lack of awareness of sarcoma among patients and their families, leading to pronounced distress for parents following their child's diagnosis and an initial sense of limited peer support. Treatment-related disability was an important issue for children and their families who described the lasting psychological and physical impact on life after surgery for sarcoma.