Forgotten voices: lessons from bereaved caregivers of persons with a brain tumour

Abstract

Although investigators have identified rewards and difficulties from assuming the role of caregiver for persons with cancer and persons with Alzheimer's disease, few studies have examined factors that lead to role strain for caregivers of persons with both oncological and neurological symptoms. In this study qualitative methods were used to analyse data from self-report questionnaires from 43 caregivers of adults with a primary malignant brain tumour (PMBT) in the USA. Six themes emerged from the analysis: the work of caring, informal support, formal support, information, dealing with symptoms, and end of life. The data suggest that health-care providers (HCPs) may decrease role strain by helping to identify competing demands, clarifying expectations of the role, providing information to caregivers on how to use formal and informal support systems to delegate care tasks, and by teaching caregivers how and when to ask for help. HCPs may also assist caregivers by providing information on managing cognitive and neuropsychiatric problems at home, what to expect at the end of life, and by following up to determine the caregiver's ability to integrate information into providing care.