Experiences of families post treatment for childhood brain tumours during medical clinic consultations regarding health‐related quality of life, unmet needs and communication barriers: A qualitative exploration

Abstract

Background Many studies highlight poor health-related quality of life (HRQoL) in children treated for brain tumours and their parents. However, little is known about the extent to which their informational, healthcare and communication needs regarding HRQoL are met during medical outpatient consultations.

Aim To explore the experiences of families regarding communication with physicians about HRQoL issues during consultations after treatment for childhood brain tumours.

Methods Interviews were conducted with 18 families of children and adolescents aged 8–17 years after completion of brain tumour treatment. Participants had completed treatment within the last 5 years and were receiving regular outpatient follow-up care. Thematic analysis was undertaken using the Framework Method.

Results Five main themes were identified: (i) unmet emotional and mental health needs; (ii) double protection; (iii) unmet information needs; (iv) communication barriers within consultations; and (v) finding a new normal.

Conclusion There was a need to improve communication between clinicians and these families, improve information provision, and overcome barriers to conversing with children within these outpatient consultations. Children and their parents should be supported to voice their current needs and concerns regarding their HRQoL. These findings will inform further development of the UK version of the ‘KLIK’ patient- and parent-reported outcome (PROM) portal.