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.