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
Open accessAbstract
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.
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These theories are also influenced by contextual barriers including poverty, stigma and distrustful and difficult relationships with HCWs.
“These theories are also influenced by contextual barriers including poverty, stigma and distrustful and difficult relationships with HCWs [33].”
From Echoes of old HIV paradigms: reassessing the problem of engaging men in HIV testing and treatment through women’s perspectives (2017) · cites this paper as [33]
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- Authors
- Stern, E., Colvin, C., Gxabagxaba, N., Schutz, C., Burton, R., & Meintjes, G.
- Affiliations
- University of Cape Town (ZA)
- Corresponding author
- Stern, Erin
- Venue
- African Journal of AIDS Research
- Published
- 2017-01-02
- Volume
- 16
- Issue
- 1
- Pages
- 19-29
- ISSN
- 1608-5906 (ISSN-L)
- 1727-9445
- PMC
- PMC5557274
- OpenAlex
- W2604223714
- Cited by
- 30
- References
- 34
- Citations by year
- 2026: 2 · 2025: 2 · 2024: 3 · 2023: 2 · 2022: 7 · 2021: 4 · 2020: 1 · 2019: 4 · 2018: 3 · 2017: 2
- FWCI
- 2.10
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- African Journal of AIDS Research (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- LSHTM Research Online (London School of Hygiene and Tropical Medicine) (acceptedVersion)
- Medecins Sans Frontieres Field Research (Medecins Sans Frontieres) (submittedVersion)
- Funders
- South African Social Science and HIV (SASH) Programme at the University of Cape Town (Award #R24HD077976)
- Topics
- Health Sciences › Medicine › Infectious Diseases › HIV/AIDS Research and Interventions
- Health Sciences › Medicine › Family Practice › Medication Adherence and Compliance
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › HIV/AIDS Impact and Responses
- Keywords
- antiretroviral therapy adherence, HIV, treatment default, patient agency, caregiver-patient relationship, loss to follow-up, healthcare workers, Khayelitsha, HIV prevention
- MeSH terms
- Adult, Female, Health Personnel, Humans, Male, Professional-Patient Relations, Risk Factors, Socioeconomic Factors, South Africa, HIV Infections, Antiretroviral Therapy, Highly Active, Qualitative Research, Medication Adherence, Public Health Surveillance
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