Study finds fear drives pregnant women with HIV from prevention services

“If my husband leaves me, I will go home and suffer, so better cling to him and hide this thing”

The following is a guest post by Valerie Flax for MEASURE Evaluation

A study published June 8, 2017 in PLOS One investigated why HIV-positive pregnant women might drop out of a treatment program that would protect their infants and possibly save their lives. For many, the answer was fear.

Fear of HIV disclosure, fear of stigma, fear of their husband’s reaction, risk of divorce and loss of economic support, along with a lack of social support, lack of self-efficacy and agency for women in the culture, and a lack of male involvement in the program generally.

The study was conducted by MEASURE Evaluation, with support from the U.S. Agency for International Development, and focused on the influence of gender and gender roles on women’s participation in the Option B+ Prevention of Mother To Child Transmission program in urban and rural areas of Malawi and Uganda. Enrollment in programs for prevention of mother-to-child transmission of HIV has increased in recent years under Option B+, which provides lifelong antiretroviral therapy to pregnant and breastfeeding HIV-positive women regardless of their health status. However, keeping women in such programs has been challenging. We need to understand why this is the case, so that programs can improve retention.

In the Option B+ model, women learn about their HIV status and start lifelong antiretroviral treatment on the same day, before they have a chance to talk to their husbands or families. Typically, their husbands are not with them at this clinic visit, because antenatal care sites are seen as female spaces where men would not go.

Our study conducted in-depth interviews with women participating in PMTCT programs, women who dropped out of such programs, health workers, and people working for organizations that support PMTCT services. We also held 16 focus group discussions with men.

We found if a woman did not disclose her status, it was difficult for her to take her medication or visit the clinic in secret, due to fear of her husband finding out her status and becoming angry, possibly violent, and preventing her participation. Involving couples in the consultation leading to enrollment in the Option B+ program would be an important strategy to increase women’s participation.

We also suggest several program-specific strategies to facilitate women’s continued participation. Support in the form of encouragement from relatives and health workers, reminders to take medication, and money for transportation to the clinic would lift participation.

Overall, to improve participation in PMTCT programs, we recommend that ministries of health use evidence-based strategies to address HIV stigma in the society, address the challenges related to disclosure of HIV status in families and communities, build social support and male involvement in the program, and address underlying gender inequality.

Valerie Flax, PhD, MPH, is International Nutrition Research Advisor at RTI International

Reprinted with permission from Science Speaks.