An exploration of the causes, manifestations and consequences of tuberculosis stigma in an urban district in Ghana

This thesis used a qualititave research approach to explore the causes, manifestations and consequences of tuberculosis (TB) stigma in an urban district in Ghana. It examined reasons why TB is stigmatised and elucidated how TB stigma manifests within the community setting and the healthcare system. It also explored the feelings and experiences of TB patients, to highlight how the fear of stigmatisation may affect case finding and treatment adherence. Twenty eight focus groups (6 with patients, 6 with health workers and 16 with community members) and 121 individual interviews (66 with community members, 34 with patients and 21 with health staff) were conducted. Data were analysed using Grounded Theory techniques and procedures. Eleven causes of TB stigma were identified: fear of infection; physical frailty of TB patients; association of TB with HIV/AIDS; perceived causes and spread of TB; outdated societal practices about TB; public health practice and discourse; attitudes of healthcare workers towards TB patients; health staff’s own fear of TB; self-stigmatisation by TB patients; judgement, blaming and shaming TB patients; and past experiences with TB. Elements of physical and moral threats were identified in all these causes of TB stigma. The threat the disease poses to community members led to imposition of socio-physical distance, participatory restrictions and rules for unexpected interactions on those suffering from TB in society. Within the healthcare system, the threat of TB affected the attitudes and behaviours of healthcare workers towards TB patients and TB work. Health managers also sited TB units/wards in isolated parts of the hospital, and failed to provide adequate tools and equipment, support and supervision to enable the provision of quality TB services. The fear of stigmatisation made the patients deny the obvious symptoms of the disease, and report to the hospital only after prolonged period of self-medication in the community. When diagnosed, they cried, questioned how they got the disease, contemplated committing suicide and were mostly isolated within the family and community. For everyone, the threat of TB underlies their beliefs, attitudes, actions and behaviours when interacting with TB patients. It also forms the basis of avoidance of social interactions, and attitudes and practices of healthcare workers towards TB patients. The TB control programme should encourage open discussion about TB in the community and tailor health education messages to the community’s understanding of the disease. TB services should be completely integrated into the general healthcare system and community members involved in activities of the TB control programme. Regular refresher courses in TB control and management should be organised for health professionals and a national guideline for the prevention of TB in health workers developed