The fluidity of disclosure: A longitudinal exploration of women's experience and understanding of HIV disclosure in the context of pregnancy and early motherhood

Abstract

HIV disclosure is emphasised as an important component of efforts to prevent HIV transmission, including those to prevent transmission from mother to child. Studies which approach disclosure as a dichotomous variable that is either present or absent have generated a significant body of research describing disclosure patterns, antecedents, barriers and consequences. This study joins a growing body of research which explores disclosure as a complex, selective and gradual process occurring within the context of relationships. Using a qualitative, longitudinal ethnographic approach, the study explores HIV-positive women's subjective experience of disclosure and how they make meaning and understand disclosure processes during pregnancy and early motherhood. An interpretative phenomenological analysis of field notes from participant observation and in-depth interview transcripts suggests that women may experience disclosure as a more fluid construct than previously assumed. In contrast to the traditional dichotomous and linear approach to understanding disclosure, the meaning ascribed to disclosure “events” and behaviours was changeable and even reversible over time. These shifts occurred alongside changes in women's internal, interpersonal and material worlds and served important psychological and social functions. The findings have important implications for HIV counsellors working to encourage disclosure in the context of prevention interventions.

Keywords:

• HIV disclosure
• prevention of mother-to-child transmission
• ethnography
• interpretative phenomenological analysis
• pregnancy
• motherhood

Acknowledgements

We would like to thank the research team from the Children's Institute at the University of Cape Town where the study was conducted: thanks to Andile Mayekiso for his invaluable role in fieldwork and initial data coding, and to the fieldworkers on the project, Khunjuzwa Khume and Zokiswa Mazula, for their tireless efforts in the field. We are also grateful to Prof Pamela Reynolds for her role in conceptualising the broader study. Funding from the Rockefeller Brothers Fund, Medical Research Council and the Humanist Institute for Development Cooperation (HIVOS) is gratefully acknowledged. Finally, we would like to thank the incredible women who participated in this study and gave so graciously of their time and energy.

Notes

1. Pseudonyms have been used throughout to protect confidentiality.

2. Derogatory term for foreigner.