A qualitative exploration of parental caregivers’ experience caring for children who have survived medulloblastoma

Abstract Background Approximately 70% of children diagnosed with a medulloblastoma will become long‐term survivors. Medulloblastoma therapy frequently causes long‐term morbidities in survivors, which places a considerable burden on parental caregivers. We aimed to explore the experience of parental caregivers caring for medulloblastoma survivors. Methods We conducted a qualitative study using grounded theory thematic analysis. We used semi‐structured parental caregiver interviews to explore family experiences, social circumstances, and family‐reported impact within families of children who had survived medulloblastoma. Parental caregivers were recruited from specialized survivor clinics at two large quaternary centers in Toronto, Canada. Results Sixteen of 22 eligible families participated, and 20 parental caregiver interviews were completed. Survivors were a median age of 6 years (range: 1–9 years) at diagnosis, and were 9.5 years (range: 5–12 years) from treatment at the time of the interview. Three major themes and associated subthemes emerged: (i) parental caregivers described significant long‐term challenges associated with their child's survivorship. Subthemes included medical treatment sequelae, school issues and behavioral concerns, and surveillance and access to care. (ii) Parental caregivers recognized the impact that their child's quality of life (QOL) had on both their personal and family QOL. Subthemes included parental QOL, parental mental health and coping, spousal relationships, and effects on the family unit as a whole. (iii) Parental caregivers reported experiencing conflicting emotions related to their child's survivorship status and long‐term effects. Subthemes included feeling happiness with concurrent worry, fear, and stress, as well as concerns about the future. Conclusions Parental caregivers of medulloblastoma survivors experience long‐term challenges, with personal and family impacts. Further work is needed to improve care models and support systems for families with a child who has survived medulloblastoma.