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

ABSTRACT

The 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.

KEYWORDS:

• Stigma
• AIDS
• reproduction
• women
• health-care services

Acknowledgements

We would like to thank the 29 women interviewed. We would also thank the anonymous reviewers for their constructive and relevant feedback.

Disclosure statement

No potential conflict of interest was reported by the authors.

ORCiD

Simone Monteiro http://orcid.org/0000-0003-2009-1790

Adriana Pinho http://orcid.org/0000-0003-2219-1066

Notes

1 Family income includes social stipends such as the Bolsa Familia program (Family Grant), a government income-transfer programme for families in poverty and extreme poverty with a per-capita income of up to US$55 per month in 2013.

2 In 2013 the minimum monthly wage in Brazil was around US$315.

3 The women’s initials are cited after all the testimonies reproduced in the text so that the reader can identify the characteristics of the speaker in Table 1.

4 http://www.actupny.org/reports/silencedeath.html (accessed on November 30, 2014).

 

Additional information

Funding

We would like also to acknowledge the financial support from FAPERJ (Fundação de Amparo a Pesquisa do Estado do Rio de Janeiro) (Research Support Foundation of the State of Rio de Janeiro) [grant number E-26/111.116/2013]; and CNPq (Conselho Nacional de Desenvolvimento Cientifico e Tecnologico) (National Council for Scientific and Technological Development) [grant number N. 400149/2011-7], [grant number 307256/2012-0].