Families' experiences of child and adolescent brain tumor: A systematic review and synthesis of qualitative research

Objectives: Brain tumors are the most common and fatal of all solid tumors for children and adolescents; those who survive live with long-term physical and emotional consequences, as do their families. We aimed to synthesize relevant qualitative evidence on families’ experiences and psychosocial service needs across the lifespan to identify gaps in care delivery and research.Methods: Searches were conducted in Medline, CINAHL, PsycInfo, Embase, and Web of Science. Identified papers were assessed with the Joanna Briggs Institute Critical Appraisal Tool. Data were extracted into NVivo12 and analyzed by qualitative description and, where appropriate, thematic analysis.Results: The search yielded 628 papers, of which 40 (33 studies) were eligible (6%). Although the methodological quality of the papers was low, we identified concerns that were consistently reported over time and from different perspectives. Individual family members had varying psychosocial needs to be addressed within healthcare, schooling, and public policy. These include for survivor’s mental health (particularly for body image), and to the disproportionate biopsychosocial burden faced by mother-caregivers.Conclusions: Addressing the biological aspects of brain tumor cannot be our only focus. We have an obligation to provide services that meet the needs of families across diagnosis, treatment, survivorship, palliative care, and bereavement