PURPOSE: Participation of volunteers in clinical research is essential to the development of effective HIV prevention methods, including an HIV vaccine. This study expands current knowledge of stigma and discrimination related to participation in HIV vaccine research in sub-Saharan Africa by exploring the perception of stigma and discrimination as a barrier to participation in HIV vaccine research in Kenya. METHODS: Eighteen focus groups with a total of 133 participants and 82 individual interviews were conducted with a range of respondents at two centers in Nairobi, Kenya: a preventive AIDS vaccine trial center; and a preparatory clinical and epidemiological study center. Respondents included peer leaders, community advisory board members, former and current volunteers in clinical research, study staff, community leaders and community members. Data were analyzed using an iterative coding process. RESULTS: Four prominent stigma-related barriers to participation emerged among all respondent groups, across both centers: (1) volunteers are often assumed by family and community members to be HIV positive because of their participation in vaccine research; (2) 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; (3) 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; and (4) volunteers must carefully manage information about their participation because of misperceptions and assumptions about vaccine research volunteers. CONCLUSIONS: HIV-related stigma and discrimination influence people's decisions to join HIV-vaccine related research. Findings underscore a need for integration of stigma-reduction programming into education and outreach activities for volunteers, and the communities in which they live. This is particularly critical for trials recruiting individuals with higher HIV risk, who are often already highly stigmatized.
PURPOSE: Participation of volunteers in clinical research is essential to the development of effective HIV prevention methods, including an HIV vaccine. This study expands current knowledge of stigma and discrimination related to participation in HIV vaccine research in sub-Saharan Africa by exploring the perception of stigma and discrimination as a barrier to participation in HIV vaccine research in Kenya. METHODS: Eighteen focus groups with a total of 133 participants and 82 individual interviews were conducted with a range of respondents at two centers in Nairobi, Kenya: a preventive AIDS vaccine trial center; and a preparatory clinical and epidemiological study center. Respondents included peer leaders, community advisory board members, former and current volunteers in clinical research, study staff, community leaders and community members. Data were analyzed using an iterative coding process. RESULTS: Four prominent stigma-related barriers to participation emerged among all respondent groups, across both centers: (1) volunteers are often assumed by family and community members to be HIV positive because of their participation in vaccine research; (2) 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; (3) 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; and (4) volunteers must carefully manage information about their participation because of misperceptions and assumptions about vaccine research volunteers. CONCLUSIONS: HIV-related stigma and discrimination influence people's decisions to join HIV-vaccine related research. Findings underscore a need for integration of stigma-reduction programming into education and outreach activities for volunteers, and the communities in which they live. This is particularly critical for trials recruiting individuals with higher HIV risk, who are often already highly stigmatized.
Authors: Cecilia Akatukwasa; Monica Getahun; Alison M El Ayadi; Judith Namanya; Irene Maeri; Harriet Itiakorit; Lawrence Owino; Naomi Sanyu; Jane Kabami; Emmanuel Ssemmondo; Norton Sang; Dalsone Kwarisiima; Maya L Petersen; Edwin D Charlebois; Gabriel Chamie; Tamara D Clark; Craig R Cohen; Moses R Kamya; Elizabeth A Bukusi; Diane V Havlir; Carol S Camlin Journal: PLoS One Date: 2021-05-17 Impact factor: 3.752
Authors: Joyce L Browne; Connie O Rees; Johannes J M van Delden; Irene Agyepong; Diederick E Grobbee; Ama Edwin; Kerstin Klipstein-Grobusch; Rieke van der Graaf Journal: Trop Med Int Health Date: 2019-01-08 Impact factor: 2.622
Authors: Ariane van der Straten; Jonathan Stadler; Ellen Luecke; Nicole Laborde; Miriam Hartmann; Elizabeth T Montgomery Journal: J Int AIDS Soc Date: 2014-09-08 Impact factor: 5.396
Authors: Yang Zhao; Thomas Fitzpatrick; Bin Wan; Suzanne Day; Allison Mathews; Joseph D Tucker Journal: BMC Med Ethics Date: 2019-10-17 Impact factor: 2.652