Can the experience of caring at home affect carers' retrospective evaluation of community care services?

Abstract

This paper investigates whether informal carers' experience of caring for their dying cancer patients at home affects their retrospective evaluation of the services received by these patients from community nurses, GPs, and the health and social services in general. Analysis was conducted on a sub-sample of the Regional Study of Care for the Dying (RSCD), a retrospective survey of family members and others who knew most about the last year of life of a random sample of people who died in 20 health districts in the UK in 1990. The sub-sample consisted of 1,858 carers of people who died from cancer (ICD, 140-208). The results showed statistically significant associations between carers' satisfaction with community nurses, GPs, and the health and social services in general and their perceptions that caring at home was a rewarding activity, and that their social activities were severely or fairly restricted. Carers' satisfaction with all providers was also more likely to have been reported by those who reported having had no need for more home help. All this suggests the importance of supporting carers to enable them to fulfil their caretaking role and to cope with caring at home. This in turn could lead to an increase in their level of acceptability of the services provided.