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.