Patterns of disclosure : an investigation into the dynamics of disclosure among HIV-positive women in two PMTCT settings in an urban context, KwaZulu-Natal, South Africa.

Abstract

Introduction: Little guidance is given to health professionals over how to deal with HIV disclosure complexities in the biomedical setting. Given the paucity of related research in this context, there is also little consideration of the actual effect of HIV disclosure in a given context. Social constructionist theory is an important contribution to disclosure research because it shifts the focus from a biomedical perspective to one that incorporates an individual's experience with HIV infection in a specific context. The task of this study was to develop substantive theory, with the aim of providing a theoretical framework for public health and health care practitioners to better understand HIV disclosure dynamics in the PMTCT setting. Methods: This was a qualitative study which explored the experience of disclosure amongst HIV positive pregnant women in the PMTCT context. Between 5 June – 31 November 2008, a total of 62 participants were recruited from two urban-based PMTCT programmes located within the eThekwini District, KwaZulu-Natal, South Africa. Results: Participants disclosed to two main groups: sexual partners, and family/others. Structural and relationship network factors shaped transmission risk behaviour, subsequent disclosure behaviour and outcomes. The circumstances which placed participants at risk for HIV acquisition also affected the likelihood of disclosure and health behaviour change. HIV and pregnancy diagnoses often occurred concurrently which profoundly impacted on participant's social identities and disclosure behaviour. Current HIV testing protocols within PMTCT settings often recommend disclosure to sexual partners under the assumption that couples will engage in safer behaviours, yet findings from this study indicate that this assumption should be challenged. Discussion: The study findings are synthesized in a conceptual model which offers substantive new theory over the concepts and interrelated factors that were identified to shape HIV disclosure and outcomes in the PMTCT context. The model identifies the following domains: 1) social networks and social support; 2) identity; 3) risk behaviour; 4) HIV and pregnancy diagnoses; and 5) HIV disclosure process to partners and others. Recommendations: Assumed pathways to risk reduction and HIV prevention need to be relooked and reconsidered. The conceptual model provides a proposed framework for future research, intervention design and implementation planning in the PMTCT setting.