Abstract
BACKGROUND: In 2012, Uganda started implementing lifelong antiretroviral therapy (ART) for prevention of mother to child transmission (PMTCT) in line with the WHO 2012 guidelines. This study explored experiences of HIV infected pregnant and breastfeeding women regarding barriers and facilitators to uptake and adherence to lifelong ART. METHODS: This was a cross-sectional qualitative study conducted in three districts (Masaka, Mityana and Luwero) in Uganda, between February and May 2014. We conducted in-depth interviews with 57 pregnant and breastfeeding women receiving care in six health facilities, who had been on lifelong ART for at least 6 months. Data analysis was done using a content thematic approach with Atlas-ti software. RESULTS: Initiation of lifelong ART was done the same day the mother tested HIV positive. Several women felt the counselling was inadequate and had reservations about taking ART for life. The main motivation to initiate and adhere to ART was the desire to have an HIV-free baby. Adherence was a challenge, ranging from not taking the drugs at the right time, to completely missing doses and clinic appointments. Support from their male partners and peer family support groups enhanced good adherence. Fear to disclose HIV status to partners, drug related factors (side effects and the big size of the tablet), and HIV stigma were major barriers to ART initiation and adherence. Transition from antenatal care to HIV chronic care clinics was a challenge due to fear of stigma and discrimination. CONCLUSIONS: In order to maximize the benefits of lifelong ART, adequate preparation of women before ART initiation and on-going support through family support groups and male partner engagement are critical, particularly after birth and cessation of breastfeeding.