Available, but not always accessible: A nationwide, qualitative study of multidisciplinary healthcare providers’ experiences with follow-up care after paediatric brain tumour

Abstract

Objective Paediatric brain tumour (PBT) survivors face high risks of disabling long‐term and late effects. Whether survivors’ needs are met in a system with publicly funded services, but in the absence of a formal long‐term follow‐up model, is uncertain. Empirically based recommendations for a national model are needed. We explored multidisciplinary healthcare providers’ (HCP) experiences with providing such care.

Methods We conducted five focus‐group interviews and five individual interviews with a nationally representative sample of 33 Norwegian HCPs. Focus‐group interviews and individual interviews were analysed using systematic text condensation.

Results Three main themes were identified: (a) ‘Providing care above and beyond system constraints’, describing a perceived discrepancy between HCPs’ knowledge of, and their ability to meet, the survivors’ needs. (b) ‘System barriers to providing optimal follow‐up care’, describing a perceived lack of routines for communication and coordination between the HCPs and existing care services. (c) ‘Nurses and shared‐care to improve care’, including empowering nurses and establishing routines for collaborations and areas of responsibilities.

Conclusion The current healthcare system was perceived not to fully meet the survivors’ needs. Nurse‐led care models, including standardised patient‐care pathways, were suggested to increase the accessibility of already‐existing services and thus to improve long‐term follow‐up care.