Fear prompts women to drop out of HIV treatment programmes

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A US study investigated why HIV-positive pregnant women in Malawi and Uganda might drop out of a treatment programme 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 programme generally.

The study was conducted by MEASURE Evaluation, with support from the US 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 programme in urban and rural areas of Malawi and Uganda.

Enrolment in programmes 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 programmes 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 programmes, women who dropped out of such programs, health workers, and people working for organisations 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+ programme would be an important strategy to increase women’s participation.

We also suggest several programme-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 programmes, 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.

The role of gender in prevention of mother-to-child transmission (PMTCT) participation under Option B+ has not been adequately studied, but it is critical for reducing losses to follow-up. This study used qualitative methods to examine the interplay of gender and individual, interpersonal, health system, and community factors that contribute to PMTCT participation in Malawi and Uganda. We conducted in-depth interviews with women in PMTCT, women lost to follow-up, government health workers, and stakeholders at organizations supporting PMTCT as well as focus group discussions with men. We analyzed the data using thematic content analysis. We found many similarities in key themes across respondent groups and between the two countries. The main facilitators of PMTCT participation were knowledge of the health benefits of ART, social support, and self-efficacy. The main barriers were fear of HIV disclosure and stigma and lack of social support, male involvement, self-efficacy, and agency. Under Option B+, women learn about their HIV status and start lifelong ART on the same day, before they have a chance to talk to their husbands or families. Respondents explained that very few husbands accompanied their wives to the clinic, because they felt it was a female space and were worried that others would think their wives were controlling them. Many respondents said women fear disclosing, because they fear HIV stigma as well as the risk of divorce and loss of economic support. If women do not disclose, it is difficult for them to participate in PMTCT in secret. If they do disclose, they must abide by their husbands’ decisions about their PMTCT participation, and some husbands are unsupportive or actively discouraging. To improve PMTCT participation, Ministries of Health should use evidence-based strategies to address HIV stigma, challenges related to disclosure, insufficient social support and male involvement, and underlying gender inequality.

Valerie L Flax, Jennifer Yourkavitch, Elialilia S Okello, John Kadzandira, Anne Ruhweza Katahoire, Alister C Munthali

Science Speaks blog
PLOS One abstract

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