The experience of the family caregivers' role: a qualitative study

In Ireland, there is a dearth of research exploring the perceived health and social care needs and experiences of family caregivers of older people. In response, this research study was conducted to explore the profile, role and needs of family caregivers as a means of understanding their experience of caring. The study also set out to identify coping strategies employed by caregivers and explore positive aspects of the caring relationship in relation to quality of life, information needs, day care and respite care, transport and emotional support. A multimethod approach used interviews, focus groups and postal questionnaires. In the main study a pretested questionnaire, comprising closed and open questions was used with a stratified, systematically randomized sample of caregivers in urban and rural home care settings, of which 52% of respondents to the questionnaire volunteered to partake in in-depth interviews. This article per deals predominantly with the findings arising from 10 in-depth qualitative interviews. The data yielded a rich and meaningful picture of the caregiving experience, profiling the complex nature of this diverse and multifaceted role. Findings showed that three main categories emanated from the data: the caring role-context and attitudes, the impact of caring and the need to support the carers' role. The need to develop continually an understanding of the effectiveness of specific health and social care interventions was also of paramount importance. The anticipated continuing demand for family care means that caregivers' needs and perspectives need to be integrated into future service planning and decision-making processes, in partnership with statutory and voluntary bodies. While this was the first study of its type in Ireland, the issues raised reflect the findings of other published studies and have important lessons for family carers and health care practitioners generally.