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
MetadataShow full item record
AbstractIn 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.
PublisherTaylor & Francis
- Antiretroviral therapy initiation and adherence in rural South Africa: community health workers' perspectives on barriers and facilitators.
- Authors: Loeliger KB, Niccolai LM, Mtungwa LN, Moll A, Shenoi SV
- Issue date: 2016 Aug
- Patient experiences of ART adherence clubs in Khayelitsha and Gugulethu, Cape Town, South Africa: A qualitative study.
- Authors: Venables E, Towriss C, Rini Z, Nxiba X, Cassidy T, Tutu S, Grimsrud A, Myer L, Wilkinson L
- Issue date: 2019
- Barriers and facilitators of adherence to antiretroviral drug therapy and retention in care among adult HIV-positive patients: a qualitative study from Ethiopia.
- Authors: Bezabhe WM, Chalmers L, Bereznicki LR, Peterson GM, Bimirew MA, Kassie DM
- Issue date: 2014
- Experiences of participating in an antiretroviral treatment adherence club.
- Authors: Dudhia R, Kagee A
- Issue date: 2015
- A qualitative study of patient motivation to adhere to combination antiretroviral therapy in South Africa.
- Authors: van Loggerenberg F, Gray D, Gengiah S, Kunene P, Gengiah TN, Naidoo K, Grant AD, CAPRISA 058 Study Team.
- Issue date: 2015 May