AIDS and Behavior

, Volume 19, Issue 4, pp 704–714 | Cite as

Understanding Treatment Refusal Among Adults Presenting for HIV-Testing in Soweto, South Africa: A Qualitative Study

  • Ingrid T. Katz
  • Janan Dietrich
  • Gugu Tshabalala
  • Thandekile Essien
  • Kathryn Rough
  • Alexi A. Wright
  • David R. Bangsberg
  • Glenda E. Gray
  • Norma C. Ware
Original Paper


HIV treatment initiatives have focused on increasing access to antiretroviral therapy (ART). There is growing evidence, however, that treatment availability alone is insufficient to stop the epidemic. In South Africa, only one third of individuals living with HIV are actually on treatment. Treatment refusal has been identified as a phenomenon among people who are asymptomatic, however, factors driving refusal remain poorly understood. We interviewed 50 purposively sampled participants who presented for voluntary counseling and testing in Soweto to elicit a broad range of detailed perspectives on ART refusal. We then integrated our core findings into an explanatory framework. Participants described feeling “too healthy” to start treatment, despite often having a diagnosis of AIDS. This subjective view of wellness was framed within the context of treatment being reserved for the sick. Taking ART could also lead to unintended disclosure and social isolation. These data provide a novel explanatory model of treatment refusal, recognizing perceived risks and social costs incurred when disclosing one’s status through treatment initiation. Our findings suggest that improving engagement in care for people living with HIV in South Africa will require optimizing social integration and connectivity for those who test positive.


Antiretroviral refusal Engagement in care South Africa Treatment refusal Linkage to care ART initiation 



This publication was made possible with funding from U.S. National Institutes of Health 5 K23MH09766703, and help from the Harvard University Center for AIDS Research (CFAR), an NIH funded program (P30 AI060354), which is supported by the following NIH Co-Funding and Participating Institutes and Centers: NIAID, NCI, NICHD, NHLBI, NIDA, NIMH, NIA, NIDDK, NIGMS, FIC, and OAR. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Conflict of interest

No authors have any competing interests.


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Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • Ingrid T. Katz
    • 1
    • 2
    • 3
  • Janan Dietrich
    • 4
  • Gugu Tshabalala
    • 4
  • Thandekile Essien
    • 4
  • Kathryn Rough
    • 1
    • 5
  • Alexi A. Wright
    • 2
    • 6
  • David R. Bangsberg
    • 2
    • 3
    • 7
  • Glenda E. Gray
    • 4
  • Norma C. Ware
    • 2
  1. 1.Division of Women’s HealthBrigham and Women’s HospitalBostonUSA
  2. 2.Harvard Medical SchoolBostonUSA
  3. 3.Massachusetts General Hospital Center for Global HealthBostonUSA
  4. 4.Perinatal HIV Research UnitSowetoSouth Africa
  5. 5.Department of EpidemiologyHarvard School of Public HealthBostonUSA
  6. 6.Dana Farber Cancer InstituteBostonUSA
  7. 7.Ragon Institute of Massachusetts General HospitalBostonUSA

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