Challenges and needs among pediatric oncology providers in caring for pediatric brain tumor patients and survivors: A qualitative study.
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CONTEXT: Children with pediatric brain tumors (PBT) follow a unique clinical course as diverse morbidities may emerge during treatment and may even persist into survivorship. Effectively addressing their needs requires joined efforts from various providers in order to provide optimal support. AIMS: To investigate the challenges and needs of providers working in pediatric oncology with PBT patients and survivors. METHOD: Providers with experience working with PBT patients were recruited throughout France to participate in a semi-structured interview. Data were analyzed following a reflexive thematic analysis method. RESULTS: 48 providers were interviewed, with a total of 46 participants included in the final study. Main challenges and needs were identified through 6 themes addressing the strained care environment, the triangular relationship with patients and their family, the complex needs of PBT patients, the emotional burden of care, the long journey of the care pathway, and coordination aspects. Main challenges encompassed poor communication among care teams, as well as patient-provider communication. Repeatedly facing poor prognoses and end-of-life situations were also identified as emotional challenges by providers. Participants also mentioned the necessity to decrease administrative task load, to increase the development of multidisciplinary care, and that training regarding specific PBT care needs is essential for providing optimal care. CONCLUSION: Pediatric neuro-oncology represents a unique and emotionally demanding field. Despite persistent communication and coordination challenges, findings highlight the critical importance of dedicated, well-coordinated multidisciplinary teams and long-term follow-up care to meet the complex needs of PBT patients and their families.