A descriptive study of the self-perceived needs of carers for dependants with a range of long-term problems

This study aimed to identify qualitatively the need for health and social care of carers looking after dependants from different patient groups in a geographically defined area--Fife, Scotland. It was the first stage of a systematic process designed to assess and meet carers' needs.

Subjects for the study were unpaid (or 'informal') carers looking after dependants who were known to statutory or voluntary services. A series of 14 focus group discussions with carers of dependants from seven different patient groups took place. The main outcome measure was the qualitative descriptions of carers' self-reported health and social needs.

Needs 'common' to carers across all care groups were identified. These related to the need for: information (diagnostic, prognostic and where to obtain help), improved communication with professionals, relief from stress, respite care, training and practical support. Within each area of 'common' need, carers had specific needs, which related to the particular needs of their dependant. There were also needs that were identified by carers from one or more patient groups. Carers did not necessarily recognize themselves as carers at an early stage in their caring career. Therefore, their dependants' early medical contact with their general practitioner or hospital specialist was seen by carers as a crucial point at which their own needs for information and help could be recognized. Other opportunities for health professionals to help carers related to involving carers in case management, the provision of counselling and training carers to provide care themselves.

Many of the needs described by carers were of a social nature. However, carers also described needs relating to the health services--health professionals need to be proactive in recognizing carers' health and information needs and are required to recognize carers' contribution to the welfare of their dependant. In Fife, a multi-faceted approach was used to meet these needs. The challenge for the health service is to find a way to do this at a national level.