Life after paediatric brain tumour; the perspectives of the survivors and their parents

Abstract

Aims: To explore how long-term and late effects of paediatric brain tumours influence the everyday lives of survivors at various ages and their parents.

Design: A qualitative interview study using reflexive thematic analysis.

Methods: We conducted individual interviews and focus groups with 14 paediatric brain tumour survivors aged 9-52 years and 16 parents, which were audiorecorded and transcribed. We inductively analyzed the data using Braun and Clarke's reflexive thematic analysis. Inductively derived themes were then mapped onto the components of the International Classification of Functioning, Disability and Health framework to examine the survivors' everyday functioning.

Results: All survivors experienced ongoing long-term and late effects but with considerable variations in how these restricted the survivors' functioning and thus their ability to participate in everyday life activities (e.g. social, educational and work activities). All survivors expressed an explicit focus on and use of different strategies to manage their perceived functional limitations and participation restrictions. Many survivors expressed discrepancies between their own goals, expectations and actual abilities post-cancer; making them very aware of their limitations. In addition, many survivors and parents experienced ongoing concerns about the survivors' future, including the risk of late effects, relapse or other complications.

Conclusion: A wide range of long-term and late effects continue to affect the survivors and their parents' functioning and everyday lives. Their ongoing needs emphasize the importance of comprehensive, life-long follow-up care, as recommended.

Implications for the profession and/or patient care: The complex challenges across the biopsychosocial realms faced by the survivors supports the call for multidisciplinary survivorship care. Nurses are well positioned to lead such care, as they are trained to provide holistic care and thereby support survivors' functioning and activity participation in everyday life.

Reporting method: We used the COREQ guidelines when reporting the study.

Patient or public contribution: Two user representatives (one young adult PBT survivor and one mother of a PBT survivor) ensured the relevance and quality of the semi-structured interview guides prior to the interviews with the survivors and parents. The guides were sent to the user representatives by mail, and they provided their written feedback by mail to the first author.

Keywords: cancer; childhood illness; family care; holistic care; long-term care; multiprofessional care; nursing; qualitative approaches; quality of life; rehabilitation.