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

Research output: Contribution to journalArticlepeer-review

64 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)704-714
Number of pages11
JournalAIDS and Behavior
Issue number4
StatePublished - Apr 10 2015
Externally publishedYes


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

ASJC Scopus subject areas

  • Social Psychology
  • Public Health, Environmental and Occupational Health
  • Infectious Diseases


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