Caring for individuals with a brain tumour

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.