“Always expected to be there”: The experiences of informal carers of adult palliative care patients in the community

The home is seen as a place of comfort, familiarity and security for many (Field & James, 1993) and the preferred place of death (Hinton, 1994). Family and friends provide most of the care when people die at home. With the increasing trend towards community care, more family and friends are becoming primary caregivers for palliative care patients living at home. The experiences of the informal carers and their perceptions of the role of the primary the caregiver has been overlooked to a large extent in the literature.

This study describes the positive and negative experiences of 28 informal carers providing home care to adult palliative care patients with advanced cancer.

Data collection included demographic information and the positive and negative dimensions of caregiving experiences of informal carers of palliative care patients using the Caregivers Reaction Assessment (CRA) tool (Given, Given, Stommel, Collins, King, & Frankin, 1992). The data collected via the CRA was anlaysed using descriptive statistics.

The results from this study showed that the informal carer role has a negative impact on informal carer health and daily schedule. However, informal carers felt that caregiving has a positive impact on their self-esteem. In addiion, they felt that they had good family support.

Implications for clinical nursing practice identified in this research include the importance of recognising the multidimensional aspects of the caregiving experience, and the impact of caregiving on the informal carer’s daily schedule and the need for support.