Interpreting silence, documenting experience: An anthropological approach to the study of health service users' experience with HIV/AIDS care in Lothian, Scotland

This paper presents a critique of "health service user satisfaction studies" as a forum for users' voice and influence in health services evaluation and development. The study of service user experience is discussed from a social anthropological perspective, which explicitly theorises the relationship between the theoretical/epistemological foundation of health services evaluation and its political effects. It is argued that "experience" and its articulation are products of a social and political process in which research is implicated. "Experience" is thus not a static and absolute entity which can be measured or described out of the context in which data on experience are elicited and recorded--a context of which the researcher is a part. Validating findings on service user experience proceeds from a consideration of the way power and authority structure the situations where statements of experience are elicited and includes a critical appraisal of the researcher's role and ways in which this influenced interaction with study participants. The challenge and responsibility of the researcher is to capture the expression of experience without removing it from the flow of time and the situation and context where people have some control over its articulation. Attention to silence is suggested as a part of this strategy. An action research project concerned with coordination of services for people with HIV in Lothian, Scotland, is introduced. Material on users' experience of services is presented and discussed. In conclusion, the effects of research on the organisation and content of communication in the service settings studied are considered.