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

Abstract

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.

‘I saw it as a second chance’: A qualitative exploration of experiences of treatment failure and regimen change among people living with HIV on second- and third-line antiretroviral therapy in Kenya, Malawi and Mozambique

“…Other researchers have also shown that PLHIV often blame themselves for dis-engaging from care, and that this sense of guilt and fault need to be carefully navigated by health care workers as they move forward in their treatment journeys (Layer et al, 2014). In addition, the precarity of the social transformations that accompany regimen change that we observed echo the findings in Russell and Seeley's research in Uganda among individuals who initiated first-line ART following HIV-related illnesses and recall the complexity of achieving sustained engagement with HIV care and treatment in the context of pervasive stigma and challenging social circumstances Skovdal et al, 2017;Stern, Colvin, Schutz, Burton, & Meintjes, 2017;Wamoyi et al, 2017). Other researchers have also noted apparent contradictions or paradoxes in the experiences of patients who have very long treatment histories, whereby optimism and hope often co-exist alongside new challenges that arise from sustained treatment-taking, and which may risk undermining treatment-taking (Nixon et al, 2018).…”

The Continuing Burden of Advanced HIV Disease Over 10 Years of Increasing Antiretroviral Therapy Coverage in South Africa

“…This is corroborated by surveys of HIV-associated morbidity in inpatient wards, where tuberculosis has been a major contributor to clinical presentation [ 19 ]. There is growing evidence that the successes of HIV treatment access are resulting in a sizeable population of individuals on ART who are vulnerable to rapid deterioration as they cycle in and out of care, as many do, owing to both service and personal challenges [ 12 , 20 ].…”

Echoes of old HIV paradigms: reassessing the problem of engaging men in HIV testing and treatment through women’s perspectives

“…The second theory hypothesizes that health services have been designed for women, and men have been systematically left out [ 10 ]. These theories are also influenced by contextual barriers including poverty, stigma and distrustful and difficult relationships with HCWs [ 33 ]. The findings of this study build on these two theories and provide an additional perspective; that outdated beliefs about HIV care and treatment deter men from engaging in HIV testing and treatment.…”