Issues for Primary, Informal, Home-based Carers of People Living with AIDS

Abstract

Central to the Australian national strategic response to HIV/AIDS is the need for training and support for volunteer carers of people with HIV/AIDS. However, the role of primary, informal, home-based carers of people with AIDS (PWA) is not clearly defined and the research about carers undertaken in Australia has not specifically looked at this group. The aim of the study described was to examine the experiences of primary, home-based carers of people with AIDS in order to inform policy and program development. Data were collected from 47 carers in New South Wales and Victoria between August and November, 1996. A short self-administered questionnaire collecting demographic information was followed by a longer questionnaire with mostly closed questions on preparation for caregiving, caregiving tasks, symptom management, service use, coping strategies, and impact of caregiving. Open-ended questions were about the provision of emotional support by the carer to the PWA, the carer's health and positive aspects of caregiving. Two key findings emerge from the content and thematic analyses. The first relates to the study respondents, who differ from the national profile of informal carers in two areas, gender and age. The second relates to the diverse nature of the caregiving experience, including the vast array of symptoms and diseases that an AIDS diagnosis can entail, the complexity of the relationship between the carer and care recipient and the experience of multiple caregiving. These findings highlight the difficulty in identifying simple, singular strategies for carer support and information.