Caring for individuals with a brain tumour

Abstract

Background. A primary brain tumour (PBT) diagnosis carries a poor prognosis, and disease progression along with invasive treatment can result in significant functional and neuropsychological difficulties. Informal caregivers have a crucial role in supporting individuals with a PBT, and there is a need to understand the everyday caregivingexperiences within this context.

Aim. This review aimed to carry out a systematic search of the literature to understand the caregiving experiences of carers to people with a PBT and identify implications for research and clinical practice.

Design. An electronic search of existing qualitative literature was conducted using four databases, yielding 10 studies based on inclusion criteria. A quality appraisal and thematic synthesis of the studies was carried out.

Results. Six themes were developed: ‘Consumed by Caring’, ‘Impact and Isolation’, ‘Keeping Going’, ‘Adapting to New Ways of Living’, ‘Living With the Unknown’, and ‘Finding The ‘Right’ Support’. Each theme described a different aspect of the caregiving experience. Fifteen sub-themes were explored.

Discussion & Implications. Findings were discussed within the context of existing literature, and clinical implications, such as the need for flexible support for caregivers were
considered. Recommendations for further research are also suggested.

Date of Award	2024
Original language	English