TB stigma and Quality of Life

Rationale: The detection of extreme-drug resistant Tuberculosis in South Africa is variously seen as a sign that TB is out of control. This South Africa- Netherlands Research Programme on Alternatives in Development supported project (2006-8) asks whether the stigma associated with TB is undermining detection and treatment. 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.

What the pilot study found: A pilot study conducted in Grahamstown East/Rhini in 2006 found stigma was indeed a factor that competed with the burden of disease to discourage individuals to present for and complete treatment. Apparently, TB was stigmatised in the distant past when it was known as an incurable Xhosa disease. TB lost its stigma when a bio-medical cure was found, only later to be restigmatised as a marker of AIDS. Uncertainty surrounding diagnosis and cure, especially in the case of the HIV-infected, 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.

The main study underway: An attitude survey was conducted in November and December 2007 that built on the knowledge gained from the pilot study. The sample survey of over 1000 randomly selected adults over 18 years covered all neighbourhoods of Grahamstown East/Rhini.

Researchers: Project leader Valerie Møller (ISER) and Ida Erstad (formerly ISER, now based at the University of Oslo, Norway), Netherlands research partners Harry Finkenflügel and Anna Nieboer (Erasmus Medical Centre, Rotterdam), Penny Barnard (Anthropology), Stella Kwizera (Walter Sisulu University), and consultants Dr Nommso Stubbs and Dr Nancy Phaswana-Mafuya (HSRC). Tinashe Ndoro (a Masters student in Psychology) joined the project in 2007.

Publications

Erstad, I. 2006. The Resurgence of Tuberculosis in South Africa: An Investigation of Socio-Economic Aspects of the Disease in a Context of Structural Violence in Grahamstown, Eastern Cape. Master’s thesis, Rhodes University, Grahamstown.

Møller , V., and Erstad, I. 2007. Stigma associated with tuberculosis in a time of HIV/AIDS: narratives from the Eastern Cape, South Africa. South African Review of Sociology 38(2): 103-119.

Møller, V. 2008. Living in Rhini: A 2007 update on the 1999 social indicators report. Report Series No. 14, Institute of Social and Economic Research, Rhodes University, Grahamstown.

Møller, V. and Erstad, I. 2006. ‘TB is Not an Easy Thing’: Focused discussions on the stigma related to tuberculosis in the Eastern Cape in a time of HIV/AIDS. Research Report Series No. 13, Institute of Social and Economic Research, Rhodes University Grahamstown, Pp. 77.

Møller, V., Erstad, I., Cramm, J.M., Nieboer, A.P., Finkenflügel, H., Radloff, S., Ndoro, T. and Kwizera, A.S. Delays in presenting for tuberculosis treatment associated with fear of learning one is HIV-positive.
African Journal of AIDS Research 2011, 10(1): 25-36.