The Experiences and Healthcare Needs of Families Living With Pediatric Brain Tumor: A Study Protocol

Most children and adolescents diagnosed with a brain tumour will experience considerably negative impact on their life and that of their family. In Australia, 5 year disease-free survival is 76%, meaning that almost 1 in 4 young people will live with negative consequences of the tumour and associated treatment. Little is known about the experiences and psychosocial healthcare needs of families living with brain tumour, particularly from the perspectives of children and adolescents. This study will aim to fill the knowledge gap to address the diverse needs of children and families living with a life-threatening illness. Families will be recruited through the largest state paediatric health service in Queensland and will be followed from diagnosis to capture their experiences and healthcare needs as they navigate their child’s treatment and beyond. All family members will be invited to participate. Reflexive thematic analysis will be used to explore the lived experiences of families, their community and health services needs and associated facilitators and barriers to receiving such care. Analysis will consider the individual, dynamics within each family, and patterns observed across families. This research will inform the co-design of interventions with families to address the service gaps and healthcare needs. Read full text