Introduction: Though the Prevention of Mother-to-Child Transmission (PMTCT) programmes have been widely implemented with increased availability and improving coverage of services, there have been concerns of increasing numbers of mothers who are loss to follow-up (LTFU) and those who failed to adhere to treatment after giving birth. This has led to increasing new infections of Mother-to-Child Transmission (MTCT) during post-natal periods (UNAIDS 2017). Extensive research has focussed
on the ward-based implementation of the PMTCT programmes and clinical patterns of loss to follow-up (LTFU) and non-adherence to Human Immunodeficiency Virus (HIV) treatment and there is less research on social patterns and the lived experiences of HIV positive mothers in the PMTCT programmes. This study explored the lived experiences of HIV positive mothers and their perceptions of the Community Health Workers (CHWs), lay counsellors and professional nurses in the PMTCT programmes. Methods: This study followed a comparative approach to explore patterns or experiences during the provision of HIV services, care, and retention of HIV positive mothers. The study adopted a mixed methods approach (qualitative and quantitative methods). This includes a novel qualitative unmatched case-control design, a phenomenology research design, and a cross-sectional survey. For the unmatched case-control approach, semi-structured interviews were conducted with 18 mothers who have been LTFU (cases) and 20 mothers who were undergoing care (controls). The in-depth interviews were conducted with 20 CHWs. For the quantitative methods, a cross-sectional survey was conducted with a total population of 40 professional healthcare workers (nurses and lay counsellors). Results: The social patterns of LTFU and non-adherence are gender and family dynamics of HIV disclosure (fear, guilt and struggles with methods of HIV disclosure), and self-transfers to other health facilities (to clinics that are closer to home or due to poor or failed health systems). The social patterns include delays and interruptions of ART (unreadiness and unwillingness to initiate ART, denial of HIV and beliefs that their HIV is cured; and work responsibilities). The mothers experienced HIV medication barriers (fear of getting sick from the medication side effects, lack of support to cope with the side effects, taking alternative medicines, lack of food to take with the medication, lack of support when the medication runs out) and health system barriers (long waiting periods at the health facilities, and poor treatment from the healthcare workers). The study further found the following are associated barriers of LTFU and non-adherence to HIV treatment: the dearth of knowledge about MTCT, motherhood patterns (protectiveness, regrets and self-blame) and mix-feeding explained in terms of work/school responsibilities and lack of breastmilk and responding to the baby’s cries. The nurses and lay counsellors experienced the following implementation challenges that are associated with LTFU and non-adherence to treatment: clients’ attitude (75%), lack of resources (47.5%), poor support from the government (32.5%), poor systems (17.5%), and poor PMTCT guidelines and policies (10%). The CHWs struggled with tracing clients because of wrong contact/resident addresses or missing information and lack of support (clients, community, and government support). Conclusions and Recommendations