Stigma associated with tuberculosis in a time of HIV/ AIDS: Narratives from the Eastern Cape, South Africa

Abstract

A pilot study, conducted in early 2006, explored perceptions of the stigma associated with tuberculosis (TB) in the Eastern Cape, a province of South Africa characterised by high levels of poverty and unemployment where TB is endemic. Focus group discussions conducted with residents of Grahamstown East, Makana, shed light on the manner in which stigma and discrimination is perceived to impact on the control of TB. Participants in the study represented a mix of generations, socio-economic backgrounds, and bio-medical and lay knowledge of TB. Stigma was spontaneously identified as a factor that competed with the burden of disease to discourage individuals to present for and complete treatment. The study found that the stigma associated with TB had come full circle in the Eastern Cape. Apparently, TB was stigmatised in the past when it was known mainly as an incurable ‘Xhosa disease’. TB lost its stigma when a cure was found, only later to be restigmatised as a marker of AIDS. Uncertainty surrounding the diagnosis and cure of TB for persons coinfected with HIV contributed to prejudice. By consensus, AIDS was characterised as a ‘killer’ disease. Similarly, TB was seen to be a very serious condition that could be fatal if not treated or diagnosed in time. However, in line with public health messages, TB was also projected as a curable and therefore less serious disease if the prescribed course of treatment was completed. The spread of TB and the incidence of multi-drug resistant TB were attributed mainly to the irresponsible behaviour of non-compliant TB patients and the AIDS epidemic. A question for future research is whether the new threat of extremely drug resistant (XDR-) TB will modify attitudes and the prospects of fighting the disease.

Keywords:

• Tuberculosis
• HIV/AIDS
• stigma
• discrimination
• narratives
• South Africa