Abstract #212  -  Ethical issues in HIV/AIDS research in Africa: Boundaries between research and intervention
Authors:   Presenting Author:   Prof Maretha Visser - University of Pretoria
Additional Authors:  Dr Jenny Makin, Prof  Brian Forsyth,
Aim: HIV/AIDS is probably the most researched topic in Africa with research results about prevalence, testing rates, level of disclosure, mortality level, number of children infected and orphaned in all of the countries published continuously. To participate in HIV research in Africa though presents a few ethical challenges for researchers. This paper will highlight some of these challenges experienced.
Method / Issue: A focus group discussion was conducted with the interviewers participating in a longitudinal research project following HIV+ women for a period of two years, about the impact of the research on their own lives and the lives of the participants.
Results / Comments: To obtain valid information from participants for research purposes, the interviewers had to build trusting relationships with the participants and became involved in their lives. Despite giving informed consent after explanation of what the research involved, the participants expected help to deal with their economic and psychosocial problems. The intense emotional pain and poverty experienced by the HIV+ women evoked a sense of responsibility in the researchers to help the women. This created a dilemma between the research (to gain information) and the necessity to intervene in their lives. Even though no specific intervention was offered, the participants benefited from the research by sharing their stories and receiving support during the interviews. In this way the research became an intervention in itself. The intense emotional content shared in interviews, resulted in the interviewers experiencing burnout, emotional distancing and lack of trust in their own relationships.
Discussion: HIV/AIDS research raises some ethical questions about the boundaries between research and intervention. At the onset of the research the researchers should be aware of the needs of respondents and form linkages to existing helping organizations or should assist in developing these infrastructures in resource-poor communities to assist HIV+ individuals and their communities. The researchers also need regular debriefing and counselling to cope with the emotional demands of the research.
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