Self-reported stigma and other challenges to HIV treatment adherence for clients in their first 6 months after treatment initiation in Zambia

Abstract Background The first six months after initiating or re-initiating antiretroviral therapy (ART) for HIV is the highest risk period for disengagement from care. Little qualitative research has explored ART clients’ experiences in this period in the era of universal ART eligibility. We aimed to understand clients’ challenges in the early treatment period in order to identify potential interventions that could both meet ART clients’ needs and optimize efficiency in this time of declining resources. Methods We surveyed adults who were initiating or had recently initiated (<6 months) ART at 12 healthcare facilities in two provinces of Zambia. A subset of survey respondents who had experienced or anticipated experiencing adherence challenges were recruited to participate in focus group discussions (FGDs) up to 12 months after the survey. FGDs included up to 10 participants each and were led by facilitators trained in qualitative methods. Results Fifteen FGDs were conducted (n=126 participants, median age 35). Themes emerged at the individual, interpersonal, facility, and community levels. Stigma related to HIV was the most common theme at all levels. Participants expressed self-stigma, fear of disclosure to family and acquaintances, concerns about what would happen to romantic relationships if their partner learned of their status, and fear of community gossip. Food insecurity was common. Clinic congestion, lack of privacy, and unsympathetic providers emerged as facility-level barriers. Participants mentioned lack of transport money and work conflicts as other impediments. Religious leaders and reliance on traditional healers discouraged ongoing engagement in care. Discussion Zambian ART clients faced multifaceted barriers to remaining in care during the critical first few months, with particular concern about the insidious roles of stigma influencing their behavior. While societal stigma remains stubbornly difficult to offset, clients’ early clinic experiences—often marked by unwelcome disclosure, facility inefficiency that is perceived as disrespect, and negative provider interactions—and financial and logistical challenges may be amenable to improvement by adapting existing evidence-based interventions.