Factors that influence disclosure and program participation among pregnant HIV-positive women: a mixed methods study in Lilongwe, Malawi

Background: Programs for the prevention of mother-to-child transmission (PMTCT) of HIV are increasingly available in low-resource settings. Challenges, such as HIV disclosure, impede participation by pregnant HIV-positive women. This study describes factors that influence women's willingness to participate in PMTCT programs and explores factors associated with HIV disclosure by pregnant women to their partners in Lilongwe, Malawi. Methods: This study was conducted in three antenatal clinics from June 2006-May 2007. Qualitative interviews were conducted with 9 clinic nurses, 4 community nurses, and 30 pregnant HIV-positive women within a week of diagnosis. An additional twelve clinic nurses participated in two focus groups. A quantitative survey was administered to 300 HIV-positive women, using probability sampling. Results: The common facilitator for participation identified by women and providers was women's desire to know their disease status. Providers believed women's high level of PMTCT knowledge contributed to participation. The main barrier to participation identified by women and providers was the culturally dominant role of partners in decision-making. Despite provider's belief that HIV disclosure was a barrier to participation, most women (90%) disclosed their HIV status to their partner, and most (73%) did so early (day of diagnosis). Of women who disclosed, almost half (47%) told more than one person. Women who believed they were infected by their partner were more likely to disclose (OR=2.82, 95% CI 1.17, 6.81). Women who tested for HIV before their partner were more likely to disclose early (OR=2.26, 95% CI 1.14, 4.48) and to more than one person (OR=2.58, 95% CI 1.39, 4.78). Reasons women disclosed to their partners were often the same reasons nurses promoted in post-test counseling, specifically cultural obligation and communication norms with partners, belief the partner infected the woman, negotiation for condom use, and explanation for illness. Conclusions: Participation can be enhanced through outreach to men and women to increase knowledge of PMTCT and to promote clinic services. Post-test counseling should encourage participation and HIV disclosure. Providers should be educated that HIV disclosure was high and that women's perceptions of the source of HIV infection and of testing before their partners were powerful motivators for disclosure