Pregnant women, HIV and compliance wtih follow-up care in the prevention of mother-to-child HIV-transmission program: Lilongwe-Malawi

This short follow-up study was part of a larger prospective cohort of clients followed up for 18 months in a prevention of mother-to-child transmission program in Lilongwe-Malawi. It was set out to investigate why women in the program do not fully participate in their program’s follow-up care. During the period of data collection, this program was already in progress since April, 2002 as collaboration between the University of North Carolina project and the Malawi Ministry of health; supported by Elizabeth Glaser pediatric AIDS foundation and UNICEF-Malawi. The program operates in four public health facilities of Lilongwe and its components were integrated into the existing Maternal and Child Health program as per Malawi Ministry of health recommendations. In total, more than 18,000 pregnant women who attend their antenatal care in these facilities are reached out every year and over 80% of these women join the program. Despite these services in place, the program has lost to follow-up an estimated 20% of the HIV-infected women who had initially joined the program and little was known as to why women do not fully participate in their program’s follow-up care. The objectives of the study were therefore to identify the socio-demographic factors that are associated with client’s continued participation in the program’s follow-up care and; to identify clients’ stated reasons for continued participation and the defaulters’ reasons for not fully participating in the program’s follow-up care. Both qualitative and quantitative methods were used. Qualitative data was obtained through in-depth interviews and focus group discussions with both program compliers and the defaulters. Furthermore, an FGD with the participants’ partners was conducted to follow-up on some of the issues affecting them that these women had raised. For the quantitative part, socio-demographic data for both program compliers and defaulters were reviewed and analyzed for any variations in between these two groups. Results of the two approached were then converged to answer the research question. The study reveals that education and age of pregnancy at enrollment into the PMTCT program play a role. Furthermore, it demonstrates that negative community and family reactions as well as the gender and power in-equalities can contribute to non-participation by the clients in the PMTCT program. The study points to the importance of social support for overcoming such negative reactions to women’s participation, the need for male involvement in PMTCT programs and, recommends strategies to address these issues as a means of helping the women overcome their challenges to participation. It should also be noted that whilst quantitative data has helped to identify the socio-demographic factors associated with client participation in the program’s follow-up care, results obtained from the qualitative study are however most meaningful for understanding why women participate or not participate in their program’s follow-up care. Key words: PMTCT, default, community and family reactions, power relations, culture