Carers of patients with a primary malignant brain tumour: Are their information needs being met?

Abstract

Providing care in the home is very demanding, particularly where people with a primary malignant brain tumour (PMBT) are concerned, as there are physical, cognitive and behavioural alterations that can make significant demands on family caregivers. Aim: The aim of this article is to consider carers' access to information following diagnosis of a PMBT and information on managing the caring role. Method: A grounded theory approach was used, with 22 open-ended interviews carried out with active carers at the time of the interview. Findings: Carers identified a lack of attention to their need for information particularly regarding medication, caring and working, and becoming a carer. They develop strategies such as using the Internet to search for information and support and using friends to filter information so they are not overwhelmed with depressing information. Using these strategies, carers reduce uncertainty, alleviate stress and find a way to continue to hope. Conclusions: Carers lack guidance on how to access information at different stages of the caring journey. However, they are resourceful in finding support and information and expect health services to include and signpost them to the most appropriate sources of information.