‘It was never about me’: A qualitative inquiry into the experiences of psychological support and perceived support needs of family caregivers of people with high-grade glioma

Abstract

Background: Family caregivers of people with high-grade glioma often report high rates of psychological distress, which has been attributed to the unique aspects of the disease and onerous care demands. Clinical practice guidelines advocate for caregiver support from diagnosis through to end-of-life and bereavement. Yet, research has identified that caregivers’ support needs are often overlooked. Aim: To explore caregivers’ experiences of psychological support and perceptions of what constitutes optimal psychological support for caregivers in the context of high-grade glioma. Design: Qualitative study involving semi-structured interviews with data analysed using reflexive thematic analysis. Setting/participants: Eighteen current ( n = 11) and bereaved ( n = 7) family caregivers (73% female, aged 33–69 years) of adults with high-grade glioma participated. Interviews explored caregivers’ perceptions of psychological support. Results: Two major themes were generated. The first theme, ‘It was never about me’, reflected caregivers prioritise for people with high-grade glioma to be well supported despite experiencing their own unmet psychological support needs. The second theme, ‘Continuous, coordinated and personalised support’, highlighted the importance of timely and tailored interventions addressing caregivers’ practical, educational and emotional support needs throughout the illness journey. Conclusions: Caregivers commonly prioritise the support needs of people with high-grade gliomas; yet, have their own distinct needs that vary throughout the illness. Primary care providers have a potential role in facilitating timely access to palliative care, practical support and brain tumour-specific psychological support to meet caregivers’ diverse needs across the care continuum in the context of high-grade glioma.