Research Triangle Institute International, 805 15th St, NW, Suite 601, Washington, DC 20005, USA.
Vaccine. 2011 Nov 8;29(48):8924-8. doi: 10.1016/j.vaccine.2011.09.067. Epub 2011 Oct 1.
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.
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.
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.
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.
志愿者参与临床研究对于开发有效的 HIV 预防方法至关重要，包括 HIV 疫苗。本研究通过探索肯尼亚 HIV 疫苗研究参与的耻辱感和歧视感知作为参与的障碍，扩展了与撒哈拉以南非洲参与 HIV 疫苗研究相关的耻辱感和歧视的现有知识。
在肯尼亚内罗毕的两个中心进行了 18 个焦点小组，共 133 名参与者和 82 个个体访谈，调查对象包括同行领袖、社区咨询委员会成员、以前和现在的临床研究志愿者、研究人员、社区领袖和社区成员。采用迭代编码过程分析数据。
在两个中心的所有受访者群体中，都出现了四个突出的与耻辱相关的参与障碍：（1）由于志愿者参与疫苗研究，他们的家人和社区成员常常假设他们是 HIV 阳性；（2）在志愿者居住的社区中，人们普遍认为 HIV 相关的耻辱感是普遍存在且具有破坏性的，因此如果人们认为他们是 HIV 阳性，他们担心随之而来的耻辱感；（3）潜在的志愿者担心进行 HIV 检测，因为在认为 HIV 相关耻辱感较高的社区中，可能会披露 HIV 状况；（4）志愿者必须仔细管理有关其参与的信息，因为对疫苗研究志愿者存在误解和假设。
HIV 相关的耻辱感和歧视影响人们加入 HIV 疫苗相关研究的决定。研究结果强调需要将减少耻辱感的方案纳入志愿者和他们所居住的社区的教育和外展活动中。对于招募具有较高 HIV 风险的个体的试验来说，这一点尤为关键，因为这些个体往往已经受到高度歧视。
