The role of informal carers in supporting gay men who have HIV related illness: what do they do and what are their needs?

Despite calls for a shift from hospital to community based care for people with HIV infection there has been some speculation about whether the facilities will actually be available. One central element of community care is informal care. Structured interviews with 125 people who were supporting gay men with HIV related illness including AIDS (hereafter PWA) provide information about the characteristics of people who were helping on an informal basis, what they did, and what support they needed for themselves. It was mostly male friends and partners who were offering support. Half the carers were carrying out specific physical tasks, though much of the support was more general, particularly emotional support. Where both people had experienced symptoms some reciprocity of caring was taking place. Resistance to being labelled a 'carer' was evident. Carers felt themselves inadequately supported both practically and emotionally and were specific about what could be done to change this.