Barriers to tuberculosis care delivery among miners and their families in South Africa: an ethnographic study.

SETTING: South African miners suffer the highest tuberculosis (TB) rates in the world. Current efforts to stem the epidemic are insufficient. Historical legacies and persistent disease burden demand innovative approaches to reshape health care delivery to better serve this population.

OBJECTIVE: To characterize social and behavioral health determinants for successful TB care delivery and treatment from the perspective of miners/ex-miners, health care workers and policy makers/managers.

DESIGN: We conducted applied ethnography with 30 miners/ex-miners, 13 family/community members, 14 health care providers, and 47 local policy makers/managers in South Africa.

RESULTS: Miners/ex-miners felt health care delivery systems failed to meet their needs. Many had experienced unnecessary physical and psychological harm due to limited health education about TB, minimal engagement in their own care, lack of trust in providers, and a system that did not value their experience. Stigma and fear associated with TB result in denial of symptoms and delays in care seeking. Health care providers and policy makers/managers felt discouraged by system constraints in providing optimal care.

CONCLUSION: Our findings describe long-term effects of perpetual TB misinformation and stigma resulting from fear and disempowerment among miners and their families/communities. To reduce the TB burden, there is an urgent need to co-design a care delivery system with miners to better meet their needs.