Experiences of stigma and access to HAART in children and adolescents living with HIV/AIDS in Brazil

Abstract

This study describes and conceptualizes the experiences of stigma in a group of children living with HIV in São Paulo, Brazil, and evaluates the impact of access to highly active antiretroviral therapy (HAART) over the social course of AIDS and over the children's experiences of stigma. Through ethnographic research in São Paulo from 1999 to 2001, the life trajectories of 50 children ages 1-15 living with or affected by HIV were studied. Data were collected via participant observation and semi-structured informal interviews and analyzed using social theories on illness experience and social inequality. Our results demonstrate that AIDS-related stigma occurs within complex discrimination processes that change as children reach adolescence. We found that structural violence in the forms of poverty, racism, and inequalities in social status, gender, and age fuels children's experiences of stigma. We also describe how access to HAART changes the lived experience of children, reduces stigma, and brings new challenges in AIDS care such as adolescents' sexuality and treatment adherence. Based on these results, we propose structural violence as the framework to study stigma and argue that interventions to reduce stigma that solely target the perception and attitudes toward people living with HIV are limited. In contrast universal access to HAART in Brazil is a powerful intervention that reduces stigma, in that it transforms AIDS from a debilitating and fatal disease to a chronic and manageable one, belongs to a broader mechanism to assure citizens' rights, and reduces social inequalities in access to health care.