HIV-disclosure in the context of vertical transmission: HIV-positive mothers in Johannesburg, South Africa

Abstract

HIV-disclosure among childbearing women remains poorly understood, particularly in sub-Saharan Africa. This paper chronicles disclosure experiences of 31 women attending prevention of mother-to-child HIV transmission services in Johannesburg. Data collection entailed repeat in-depth interviews over a nine-month period. Virtually all women (93.5%) had told at least one person (usually a partner), most voluntarily and within a week of the test result. Secondary disclosure was most likely with female family members, through indirect means and involuntary. Confidentiality breach by primary targets likely contributed to the observed high rates of involuntary secondary disclosure and negative secondary disclosure experiences. For most mothers, voluntary disclosure was driven by the desire to ensure adequate infant care and avoid vertical HIV transmission. The impact of disclosure was not always clear-cut. While most primary disclosure experiences were ultimately constructive, secondary disclosure more likely led to rejection, stigmatization and the withholding of financial support. Our data illustrate the influence of social contextual factors on disclosure patterns and impact. For these mothers, socio-cultural norms, the current media and political environment surrounding HIV/AIDS, household composition and social networks and childbearing status shaped disclosure experiences; sometimes constraining disclosure circumstances and sometimes creating a safe space to disclose. Programmatic implications are also discussed.

Acknowledgments

The authors wish to thank the anonymous reviewers for their helpful comments and the support of Bristol Myers-Squibb Secure the Future Initiative and Elizabeth Glaser Pediatric AIDS Foundation for partial funding of this research.

Notes

1. The term target is used after Mason et al. (1995) to denote person(s) to whom an individual discloses. Here primary target refers to the first person to know of one's HIV-status and secondary target to those who learned of it later on.

2. The University of the Witwatersrand Ethics Review Board approved the research design and all participants provided written consent before being recruited into the study.

3. All 31 mothers in the study reported having chosen formula feeding as their preferred method of infant feeding once they learned they were HIV-positive.