Disclosure of HIV status among HIV-infected pregnant and postpartum women in Cape Town, South Africa

Background: With 2.7 million women living with HIV, the burden of HIV remains high in South Africa but adherence to antiretroviral therapy remains a concern among pregnant and postpartum women. Disclosure, or the process of gradually revealing one’s HIV status to individuals in one’s social network, is regarded as an important factor in HIV care, with potential benefits that include improved psychological well-being and adherence to antiretroviral therapy. This thesis sought to provide insights into the patterns, predictors and impact of HIV-status disclosure among pregnant and postpartum women in the context of lifelong antiretroviral therapy in South Africa, including considerations of stigma, social support, depression and unintended pregnancy. Methods: This research included women living with HIV in Gugulethu, Cape Town. A total of 1554 pregnant women were enrolled; those who were initiating antiretroviral therapy were followed up to 18 months postpartum, with one further visit at 36-60 months postpartum. Data were collected using questionnaires and blood specimens for HIV viral load testing. Findings: Across analyses, women’s social and economic circumstances emerged as central to understandings of disclosure, mental health and viral load. At entry into antenatal care, 95% of women who were diagnosed HIV-positive before the pregnancy had disclosed to at least one person but disclosure events formed two separate dimensions: disclosure to (i) a male partner and (ii) family/community members. Among women diagnosed during the pregnancy and initiating antiretroviral therapy, 61% disclosed to a male partner and 71% to a family/community member by 12 months after diagnosis; relationship status modified the impact of each of pregnancy intentions and poverty on disclosure to a male partner. During pregnancy, 1 in 10 women reported elevated depressive symptoms and 60% of women who were subsequently followed during the postpartum period reported that their pregnancy was unintended. Stigma modified the association between social support and depression: when levels of stigma were high, higher levels of social support were not associated with decreased depressive symptoms. Pregnancy intention modified the impact of disclosure to a male partner on depression during pregnancy: disclosure was associated with higher depression scores among women who reported that their current pregnancy was unintended but was associated with lower depression scores among women who reported that the pregnancy was intended. Further, unintended pregnancy was a persistent predictor of elevated viral load up to 60 months postpartum. Finally, the effect of disclosure on elevated viral load at entry into antenatal care, delivery and 12 months postpartum was complex and modified by three factors: (i) timing of HIV diagnosis (before versus during the pregnancy); (ii) relationship to the person(s) to whom women disclose; and (iii) in the case of disclosure to a male partner, relationship status. Conclusions: These findings suggest that despite the widely-held view that disclosure has beneficial impacts on psychological well-being and adherence, the individual is central to our understanding of disclosure. In particular, both the prevalence of disclosure and its impact on depression and viral load are modified by women’s circumstances. Unintended pregnancy emerged as a critical factor that heightens women’s vulnerability. In this setting, HIV-status disclosure does not appear to be universally beneficial and counselling about disclosure may be most effective if tailored to individual women’s circumstances