The family caregivers journey in end of life care: Recognizing and identifying with the role of carer

Abstract

The process of dying in the 21st Century is often protracted. An ageing population and increasing long term conditions have resulted in a need for increased palliative and end of life care. Formal health care services are unable to fully provide the level of support required at the end of life. Increasingly therefore family caregivers are being relied upon to provide often complex interactions and support to people who are dying. More is now understood about the activities they engage in and their potential support needs, however, the carer role is an elusive concept that many carers in palliative and end of life care settings do not recognise or identify with. This has implications for the interactions they may share with health and social care professionals. Drawing on current literature, policy, and a qualitative study of the perceptions of family caregivers in a palliative care setting this paper will seek to consider the role of family caregivers in palliative care settings and to explore the ways in which health and social care practitioners can assist them in undertaking this role.