Stigma Hinders Participation in Clinical HIV Trials
Nairobi, Kenya (IRIN) – Would-be participants in HIV research often refuse to volunteer out of fear of being labeled as HIV-positive and subsequently stigmatized by their communities, according to a recent study conducted in Kenya.
Conducted by the USA’s Research Triangle Institute International and published by the US National Library of Medicine in November, the study involved over 130 participants – including current and former study participants, community leaders and study staff – at two research centers in Nairobi.
“Volunteers are often assumed by family and community members to be HIV positive because of their participation in vaccine research… HIV-related stigma is perceived as pervasive and damaging in the communities where volunteers live, thus they fear consequent stigma if people believe them to be HIV positive,” the authors say in the study abstract. “Potential volunteers fear being tested for HIV, a prerequisite for participation, because of possible disclosure of HIV status in communities with high perceived HIV-related stigma.”
According to Walter Jaoko, lead researcher at the Kenya AIDS Vaccine Initiative, misinformation about HIV clinical research is one of the biggest impediments to people’s participation in research, which is a crucial part of finding ways to combat the virus.
“People will tell you they will get infected with HIV if they participate in the study or some other people will tell them the same,” he told IRIN/PlusNews. “This is mainly misinformation and it is a big problem getting people to willingly participate in clinical studies – not just for HIV but for many other diseases.”
Protus Momanyi, a 33-year-old Nairobi resident, said the main impediment to his participation in HIV research was the requirement for an HIV test. “I have never been tested for HIV and I fear going for it for my own reasons,” he said.
The study authors concluded that there was a need for “integration of stigma-reduction programming into education and outreach activities for volunteers and the communities in which they live”.
Posted on December 21, 2011 at 3:50 pm