If, When and How to Tell: A Qualitative Study of HIV Disclosure among Young Women in Zimbabwe

"In the Shona culture of Zimbabwe, a high regard for childbearing contributes to strong pressures on women to have children. For young women living with HIV, consequently, disclosure of HIV status can be a central strategy to garner support for controlling fertility."

This paper reports findings from qualitative interviews with 28 young Shona women aged 16-20 living with HIV in urban Zimbabwe on disclosure of HIV status and discusses how these findings can contribute to better policies and programmes for this population. “Regardless of their current relationship status, interview participants described disclosure as a turning point in romantic partnerships, recounting stressful experiences with major ramifications such as abuse and abandonment on the one hand, and support and love on the other."

"This qualitative study is nested within the ongoing SHAZ!-Plus intervention trial, conducted by the Pangaea Global AIDS Foundation and the Zimbabwe AIDS Prevention Programme of the University of Zimbabwe with funding from the National Institute of Child Health and Human Development. Since 2000, SHAZ! (Shaping the Health of Adolescents in Zimbabwe) has examined the effects of combined life skills education and economic opportunities on HIV outcomes among orphaned and vulnerable young women in Zimbabwe. Issues of interest include economic indicators; treatment adherence and overall health status; sexual and reproductive health outcomes; and prevention of onward transmission of HIV to infants and partners. In the current trial, young women aged 16-19 living with HIV are randomized to either receive health education and medical care (control group) or these services plus an enhanced life-skills intervention, vocational training and a micro-grant (intervention group)."

This sub-study recruited 28 of the female participants to be interviewed by Zimbabwean female researchers. The interview guide was written in English and translated into Shona. It explored "participants’ desires in terms of starting or expanding a family, as well as how those desires may be shaped by HIV or health status, family and partner expectations, and community norms around childbearing."

Related to child bearing, community norms were described as discouraging child bearing for those with HIV, despite the high value of bearing children in the culture. These norms add difficulty and stigma to disclosure of HIV status. Participants acknowledged fears of rejection and partner violence. Of the disclosed responses, there was a range between negative/abusive and caring. Some negative reactions included the male partner's disclosing the participant’s status to family members. Those participants who had not disclosed described feeling stressed about the non-disclosure, and those who were single preferred to wait for a supportive partner before disclosing their HIV status. Participants described the desire for marriage and children, but those who had lost infants expressed fears of repeated pregnancy and loss.

"Participants demonstrated high knowledge of strategies for prevention of mother-to-child transmission of HIV (PMTCT). However, many women with previous pregnancies described challenges in preventing transmission to infants. Most had tested HIV-positive preceding hospital deliveries and had taken antiretroviral regimens to prevent transmission. A few who could not pay medical fees had given birth at home, resulting in a lack of PMTCT services. Still others who knew their HIV status had not accessed PMTCT services due to a desire to keep their status private."

The majority of participants underwent testing before their partners did and described a close connection between disclosing their HIV status and engaging their partner in discussion about his HIV status or testing history.

The study concludes "that HIV and sexual and reproductive health services have failed to respond to the complicated realities and conflicting pressures facing young women living with HIV in Chitungwiza, Zimbabwe, leaving them without adequate information or resources to control fertility and achieve optimum health outcomes for themselves and their children. The study population expressed a clear desire for spaced and limited pregnancy as a way to protect their health and plan for future healthy families. HIV and sexual and reproductive health services for young women in Chitungwiza and similar settings should consider comprehensive programs that better address the complexities of disclosure as it intersects with fertility control. To help young women utilize HIV prevention and treatment services, interventions should address social norms that stigmatize people living with HIV and their families, as fear of discrimination poses a barrier to accessing care and following precautions to reduce the risk of transmission to infants and partners.”