Patients’ experiences of an intervention to support tuberculosis treatment adherence in South Africa

Abstract

Objectives: Tuberculosis (TB) infects over 9 million people annually and, in high prevalence settings, is closely related to HIV/AIDS. Despite this, the two diseases are often treated using contrasting approaches: one focused on patient control, the other focused on empowerment. This article reports on patient experiences of a TB treatment programme in South Africa modelled on the empowerment-oriented antiretroviral treatment (ART) programme. Methods: Patients’ perceptions of the programme and its impacts on their lives were investigated through six focus groups with patients from intervention clinics; two focus groups with patients from a comparison clinic; and interviews with two patients who had failed to adhere to the intervention treatment. The data were analysed using content analysis. Results: The main themes that emerged were: the tension between agency and coercion in treatment taking; treatment as a lifestyle change; and the role of the lay treatment supporter as either constraining or facilitating empowerment. Patients reported having made lifestyle changes and discussed issues of treatment control and responsibility. However, it seemed that treatment supporters maintained a monitoring role regarding patients’ treatment, limiting patients’ opportunities to exercise control over their illness and their drug regimen. Conclusions: The study suggests that differences remain between the ART approach and the new TB treatment model. While the new programme seems to have succeeded in providing additional information, it is not clear that it substantially changed patient agency over their treatment taking in this setting.