Whose health is it? Views about decision-making and information-seeking from people with HIV infection and their professional carers

The views of people with HIV and their professional carers about patients' views on involvement in decision-making and information-seeking were studied, using a standardized self-report instrument. Patients and staff reported high levels of desire for patients' involvement in their care, but there were important differences between groups. Staff had higher preference for patients' involvement in decision-making than the patients themselves, while the opposite was the case for information-seeking. There were differences between professional groups and symptomatic and asymptomatic patients, social workers generally reporting higher preference for patients' autonomy, while doctors reported lower levels. Symptomatic patients tended to have lower preference for autonomy than asymptomatic ones. The significance and practical implications of the findings are discussed.