Proceeding with care. Phase 3 of an on-going study of the impact of combination therapies on the needs of people with HIV

Duration: April 1999 - May 2000

This study looked at the needs of people with HIV using qualitative in-depth interviews with 47 people with HIV (29 men and 18 women). Respondents were a very diverse cross-section of people with HIV who were either on treatment or had been advised to go on to treatment but had decided not to do so. Some of the men and women interviewed had tried treatments but were no longer taking them.

The study demonstrated that combination therapy had affected everyone living with HIV, whether or not they were actually taking anti-HIV treatments. For those whose health had changed because of therapies, there had been immediate and often considerable changes in daily needs. For almost everyone, perceptions of the possibilities of life had shifted. The impact of these changed perceptions was highly individual, depending not only on personal circumstances, but also on the risks involved in change, including the risks of giving up current security; or of investing in a future when everything gained could be lost again. Consequently, needs were extremely diverse.

The needs which emerged could be classified under eleven main headings. In the report each broad need is described and illustrated with direct quotes from respondents. The report also demonstrates how people usually met most of their needs for themselves. When they did turn to others, their choices were based on many factors - who they trusted, who was around, who made a difference. These judgements were always open to change, so patterns of support were never predictable. Partners, friends, family and services were all prominent sources of support, but all played a part in creating needs as well as meeting them.

The central message of the study was that people's needs are very individual and should not be confused with their demand for any particular service.

The final report was called Proceeding with care. Phase 3 of an on-going study of the impact of combination therapies on the needs of people with HIV.