Experience and challenges in the recruitment and retention of HIV-infected rural Kenyan women and their children into a randomized nutrition intervention study

Abstract

Despite the knowledge and information available about HIV, stigma is still present. The affects of stigma are real and tangible. Globally HIV positive people are marginalized and often dread that their HIV status will adversely affect them socially. The belief that HIV-infected people are somehow deviant, or misconceptions about the mode of transmission fuels anxiety, fear, and distrust, which translates into barriers to adequate health care, emotional distress, and actions that can have adverse affects on health outcomes. When working with HIV-infected individuals and those at risk of becoming infected with HIV, the impact of stigma can be crippling to research. Stigma associated with HIV has had a significant role in the ability to recruit and retain eligible study subjects for a nutrition based HIV study, Increasing Animal Source Foods in Diets of HIV-infected Kenyan Women and Their Children (HNP). While this study specifically focused on HIV-infected women living in Kenya, the generalization gathered could be extrapolated to other populations. It is recommended that similar studies conduct focus groups with the study population prior to piloting, to ensure stakeholder input and an understanding of the particular challenges and concerns within a local context. Future studies should also employ individuals known in the community that the population trusts to assist with recruitment. Finally, factors that identify study staff, or associate subjects with the study should be minimal to reduce the risk of disclosing a subject’s HIV status.