Conceptions of agency and constraint for HIV-positive patients and healthcare workers to support long-term engagement with antiretroviral therapy care in Khayelitsha, South Africa

In the context of the optimism around antiretroviral therapy (ART) as prevention of HIV/AIDS, addressing the barriers to long-term ART adherence is critical. This is particularly important given the tendency to individualise or use a blame discourse when exploring why HIV-infected patients "fail" to adequately adhere to ART, and not sufficiently exploring contextual reasons for poor adherence that may require varying solutions. This study took place at three clinics and one hospital in Khayelitsha, South Africa, to document the contextual factors that challenged ART adherence in this community. Interviews were conducted with 20 HIV-infected patients who had defaulted on their ART and were subsequently admitted to Khayelitsha hospital for clinical complications, and 9 ART service providers including doctors, nurses and HIV counsellors. Interviews assessed the reasons patients defaulted on ART and explored ways this could be prevented. Data from both groups were analysed collectively using thematic analysis. While the interviews revealed a landscape of environmental risks threatening adherence to ART, all patients managed to overcome the identified barriers at some point in their treatment phase, indicating the fluidity of patients' needs and decision making. Patients reported that distrustful relationships with service providers could inhibit their understanding of ART and/or interrupt their follow-up at clinics. Patients described their rationale and agency underlying non-adherence, such as testing their bodies' physical limits without ART medication. The study speaks to the need to appreciate contextual social and structural barriers related to ART adherence, and how these are negotiated differently by specific sub-groups, to support an appropriate response. It is imperative to not solely emphasise loss to follow-up but also assess patients' subjective trajectory of their ART journey, decision making and agency with adhering to ART, their relations with healthcare workers, and how these dynamics are intertwined with broader constraints in health systems

Experiences and Conceptualizations of Sexual Debut from the Narratives of South African Men and Women in the Context of HIV/AIDS

Given the pivotal role of first sex in the development of sexual and reproductive health (SRH) practices; there is a need for more contextualised and nuanced understandings of young people's early sexual debut experiences. This study used sexual history narratives to investigate how South African men and women experience and attribute meaning to their sexual debut; and their SRH practices. In light of the gendered disparities among young people's SRH awareness and risk; differences between men and women's narratives of sexual debut were assessed. Fifty sexual history interviews were conducted with men and 25 sexual history interviews with women; with participants purposively sampled from three age categories; a range of cultural and racial backgrounds and urban and rural sites across five provinces. Narrative interviews were designed to elicit stories around participants' early knowledge of sex and sexual experimentation; their range of sexual relationships and SRH practices. The data were analysed using a thematic approach. Participants generally reflected on their early sexual experiences with feelings of inadequacy and disappointment. While men appeared to hold greater decision-making power than women at sexual debut; descriptions of men's early sexual experiences were often characterised by respect; intimacy and vulnerability. Many men attributed the timing of their sexual debut to peer pressure; which typically generated higher social status and rarely included consideration of the need to practice safer sex. Several women felt pressured by their partner to sexually debut; which could have informed their perceptions of men being sexually controlling and aggressive. The study demonstrates the value of a narrative approach for generating insights on young people's sexual debut experiences and SRH practices; and the underlying gendered norms and expectations that shape these. The findings indicate the need for gender transformative HIV interventions to take into the diversity of young people's SRH needs and social realities