‘Protective’ silence surrounding AIDS: Reasons and implications of non-disclosure among pregnant women living with HIV in Rio de Janeiro (Brazil)

Abstract

ABSTRACTThe persistence of stigma surrounding AIDS remains a challenge in the epidemic’s fourth decade. Based on qualitative research, this study analyses how pregnant women living with HIV/AIDS (PWLHA) experience and cope with AIDS stigma. A total of 29 semi-structured interviews were conducted with PWLHA focusing on socioeconomic profiles, the contexts in which they discovered HIV infection, experiences with health-care sites and ways of dealing with AIDS-related stigma. We recruited PWLHA at two prevention of mother-to-child transmission sites in Rio de Janeiro, Brazil. The PWLHA’s testimony indicates that access to care and treatment has a profound effect on the deconstruction of their understanding of AIDS as a fatal disease. However, fear of AIDS stigma is still predominant. The law guarantees HIV non-disclosure, and women see it as a way to protect themselves from discrimination. We argue, however, that the silence surrounding HIV diagnosis perpetuates the psychosocial and structural mechanisms that reproduce stigma. We conclude that diverse sectors of society, including health-care facilities, must be involved in confronting stigma by demystifying AIDS, improving patients’ knowledge of their rights, and increasing their access to material and symbolic goods.