Working with ambivalence: informal caregivers of patients at the end of life

Abstract.

Informal caregivers of patients at the end of life perform a crucial role in maintaining and supporting patients at home. They provide a high level of demanding care, and as a consequence have been shown to have high-level information and support needs themselves. However, they are less often identified as recipients of services than as providers, and little research has addressed how services should be developed to meet their needs. This study aimed to address obstacles in the access to and provision of targeted, appropriate interventions. Eighteen informal carers participated in this qualitative study, which used a grounded approach to the analysis and generation of concepts. The data showed that while recognising their stress, anxiety and need for a caregivers' service, caregivers were highly ambivalent with regard to their own needs. The design and delivery of an intervention aimed at caregivers should take account of their high level of ambivalence by addressing their lack of identification with their role, enhancing existing coping strategies, and ensuring that interventions are accessible and acceptable.