Anthea Lesch 1 , Leslie Swartz 1 and Surita Roux 2

1. “Coming to fetch AIDS’’: Research participants talk about misconceptions and stories about HIV/AIDS and HIV vaccine research among community members Anthea Lesch1, Leslie Swartz1 and Surita Roux2 Department of Psychology, Stellenbosch University; 2. Desmond Tutu HIV Foundation

2. Community participation in HIV vaccine trials • Increasing numbers of clinical trials are being conducted in low-income settings. • Communities form an integral part of development of new HIV prevention technologies. • Concerns about the rights and vulnerabilities of communities who participate in clinical research. • Brings to the fore issues relating to community understanding and knowledge of the scientific process and their participation in it.

3. Community participation in HIV vaccine trials • Community members require knowledge about clinical trials to make informed decisions about participating in research studies. • Building public understanding of science to prepare communities to participate in clinical trials to test candidate HIV vaccines is a pressing need. • Research centres invest much effort into HIV vaccine education and awareness raising efforts. • The extent to which communities are scientifically literate regarding HIV/AIDS and HIV vaccine research is not clear.

4. Goal of the research • How do we utilize community participation processes to build scientific literacy in an HIV vaccine trial site community? • To gain insight into the knowledge and understanding of HIV/AIDS and HIV vaccines of community members who reside in communities being targetted for participation in HIV vaccine research.

5. The research setting • A research clinic in a peri-urban community in the Western Cape area. Population: 20 000 • 98% of the population is Xhosa-speaking • 35% of the population is unemployed • Facilities: five schools, a police station, two clinics and one community health centre • Community education and awareness-raising activities are geared towards enhancing the likelihood of community members participating in research being conducted in the area.

6. Method • Purposive sampling to identify information rich cases. • Data was collected using focus group discussions. • Thematic analysis outlined by Braun and Clarke (2006). • Permission from the Ethical Review Board of the Faculty of Health Sciences at Stellenbosch University and the University of Cape Town. • Participants completed informed consent forms.

7. The research participants • 24 participants, between the ages of 18-40 years. • 8 male; 14 female; 2 did not report their gender • 7 completed grade 8-11; 17 completed high school • 3 employed; 19 unemployed ; 2 did not report • All participants had attended an HIV vaccine discussion group. • 15 participants were currently enrolled in studies being conducted at the research centre.

8. Results • Participants reported that an atmosphere of fear, mistrust and avoidance of anything or anyone associated with HIV/AIDS persists in their communities. • Fear and avoidance is fuelled by a lack of knowledge of HIV/AIDS and HIV vaccines. • Misconceptions and stories about the research centre, people who visit the research centre, HIV vaccine research and trial-related procedures and the benefits conferred by participation.

9. Misconceptions and stories about the Research Centre • They say there is no reason for coming here because here they give us HIV/AIDS. (FGD 3, p.9) • They just tell you ‘’you are mad, why are you going there? ‘’ They will tell you ‘’sweetheart you just go and find yourself a brain because I’m not going there. I will fight when I am sick’’. (FGD 2, p. 15) • They don’t want to know they are sick. They say: ‘’they put HIV in you’’. You can go and dig your own grave. (FGD 2, p.15) • They say that when you come to …, they are coming to fetch AIDS and more special when they get, when they were injected. (FGD 2, p. 20)

10. Misconceptions and stories about people who visit the Research Centre • They think the reason we come to this clinic is because we are positive. We are just disguising and if they also come here they will also be positive. We are calling them to come here and be injected by these needles and get infected by HIV. They do not have information and even if we try to explain to them what is going on they don’t want to listen. (FGD 3, p. 7) • We started on the participation and we are being stigmatised and being called ‘’those guinea pigs’’. (FGD 1, p. 3)

11. Misconceptions and stories about HIV vaccine research and trial-related procedures • I told them that blood is taken then they say “they’re going to use your blood and get money for drugs for us” (FGD 3, p.5) • I also brought four people here who are my friends, who said we get money here. I said to them they must come here and find out about themselves. I left them here, it was Thursday. When I went to visit them again to find out how was their visit to …, they said “that place is not right. They asked us to undress and show them our private parts’’ (FGD 3, p. 6) • They said ‘’that vaccine needle is going to give you HIV’’. They can participate at the start and get the money of the transport but at the end they don’t want to participate when it comes to the needle part (FGD 3, p. 16)

12. Misconceptions and stories about the benefits of participation • The mistake that people make is they want to test if the vaccine can cure HIV. They did not hear clearly in the beginning that the vaccine is not a cure and it will never be a cure (FGD 3, p.3)

13. Conclusions • At the community level, misconceptions about HIV/AIDS and HIV vaccines act as a barrier to community participation in HIV vaccine research. • Social and contextual factors impede efforts to build public understanding of science. • At the individual level, some community members continue to participate in HIV vaccine research. • We need to build on this and strengthen and expand our efforts into a ‘’science of community engagement’’ (Newman, 2006)

14. Next Steps • Creating an enabling and empowering environment for community education about HIV/AIDS and HIV vaccines. • Systematic evaluation of community engagement strategies being used at the Research Centre • (Co-Investigators: Leslie Swartz, Ashraf Kagee, Anthea Lesch, Zuhayr Kafaar, Peter Newman; Funded by CHVI).