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

Abstract

For most children and adolescents diagnosed with a brain tumor, whether malignant or not, there will be an irrevocably negative impact on their life and that of their family. In Australia, 5 year disease-free survival is 76% meaning that many young people will go on to live with the negative consequences—including neurological and cognitive deficits, reduced school performance, psychological problems, and problems with peer social relationships—of the tumor and associated treatment. Little is known about the experiences and psychosocial healthcare needs of families living with brain tumor, particularly from the perspectives of children and adolescents. We will fill this knowledge gap with a multimethods approach for flexible data collection that addresses the diverse needs of children and families living with a life-threatening illness. Recruited through the largest state pediatric health service in Queensland, Australia, we will follow families from diagnosis to capture their experiences and healthcare needs as they navigate their child’s treatment and survivorship or death. Data collection methods include semi-structured interviews, virtual tours and Photovoice; all family members will be invited to participate. Reflexive thematic analysis will be used to explore the lived experiences of families, and their community and health services needs and associated facilitators and barriers to receiving such care. Our analysis will consider multiple perspectives: 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 identified by participants.

Supporting families through paediatric brain tumour: Unmet needs and suggestions for change

“…Hospital restrictions related to the Covid‐19 pandemic, coupled with the nature of brain tumour and its treatment, inhibited our plans to include the experiences of children from their own perspectives 23 . Recruitment was limited to a single Australian state, and those families who clinical staff deemed appropriate to contact and who could read and speak English.…”

“…Hospital restrictions related to the Covid‐19 pandemic, coupled with the nature of brain tumour and its treatment, inhibited our plans to include the experiences of children from their own perspectives. 23 Recruitment was limited to a single Australian state, and those families who clinical staff deemed appropriate to contact and who could read and speak English. Nevertheless, parents of diverse families—in terms of both tumour type and treatment trajectory, and sociodemographic background—shared vital insight to their psychosocial care experiences and gave valuable suggestions for improvement.…”

“…We had originally anticipated that Author A would conduct the interview as she is a trained qualitative interviewer and, not being a clinician, was likely a ‘neutral’ person for families to speak with about their care experiences (see Young et al 23 . for original protocol).…”

“…We had originally anticipated that Author A would conduct the interview as she is a trained qualitative interviewer and, not being a clinician, was likely a ‘neutral’ person for families to speak with about their care experiences (see Young et al. 23 for original protocol). However, policies implemented during the initial phase of the Covid‐19 pandemic made it difficult for research staff to enter the hospital.…”