Participatory Methods for Stigma Reduction with HIV-Affected Families

HIV stigma contributes to risks for poor health; these risks are exacerbated by additional stigmas of race, gender, sexual orientation, and substance abuse history. As women continue to be infected by HIV and as people with HIV are living longer, their children, most of whom are not HIV infected, are affected by their parent’s HIV status. Children may feel stigma as acutely as their HIV-positive (HIV+) parents, contributing to the children’s vulnerability. Children of HIV+ mothers have more emotional problems, disrupted relationships, and poor school outcomes than those whose mothers are not living with HIV. As we learn about stigma’s impact beyond the individual, we are compelled to respond systemically within families to reduce future generations’ vulnerability to HIV and other risks. Based on a line of inquiry with HIV-affected teens about their stigma experiences, our multidisciplinary team discovered stigma’s impact on our ability, not only to study stigma, but to engage parents and especially their children in services and research. We draw on these findings and the literature on community-based participation to contend that participatory methods have value, not only for research and program development, but in reducing the impact of stigma with our HIV-affected partners. The participatory process is as important to stigma reduction as knowledge and service development outcomes. Participatory methods can expand our potential for breaking the cycle of intergenerational vulnerability by strengthening family skills and capacity and enhancing self-worth so those affected by HIV are empowered to overcome stigma’s impact.