Background: Caring for a person with HGG is unique because patients often experience functional and neurological deficits from diagnosis, as well as behavioural and personality changes, and cognitive decline. We aimed to determine carers’ levels of distress over time, priortise their support needs and explore predictors of distress.
Methods: Carers of people with HGG planned for chemoradiotherapy (CRT) completed questionnaires during CRT, 3 and 6 months later. Questionnaires: Distress Thermometer, General Health Questionnaire (GHQ), Partners and Carers Survey and Brain Tumour Specific Supportive Care Needs for Carers Survey (BTSSCNCS).
Results: Participation was: Baseline n=119; 3 months n=95; 6 months n=71. At baseline,
61% of carers had moderate to high levels of distress, which persisted over the study period (57% at 3m; 58% at 6m). 39% reported a significant financial impact and 56% of those previously working full-time had taken leave or reduced working hours. Feeling unprepared to care, being the main carer, having difficulty understanding information, lacking confidence in caring ability, being male, and experiencing an employment decrease were associated with increased distress across time. Main carers and those who experienced difficulty understanding information had poorer GHQ scores from baseline to 3m. The most frequently reported PCS needs were: accessing carer relevant information, the impact of caring on usual life and understanding the experience of the person with cancer. The most frequently reported BTSSCNCS needs were: help accessing assistance they may be eligible for and adjusting to changes in the mental and thinking ability of the person with a brain tumour.
Conclusion: The experience of caring for someone with HGG is highly distressing, and remains distressing. It reduces carers’ ability to work and cope financially. Strategies are required to support carers to prepare for this new role. Future research should focus on testing interventions that aid in reducing carer distress.