SummarySetting: 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 healthcare 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, healthcare workers and policymakers/managers.
Design:We conducted an applied ethnography with 30 miners/ex-miners, 13 family/community members, 14 healthcare providers, and 47 local policymakers/managers in South Africa.Results: Miners/ex-miners felt healthcare delivery systems fail to meet their needs. Many experience unnecessary physical and psychological harm due to limited health education about TB, minimal engagement in their own care, a lack of trust in providers, and a system that does not value their experience. Stigma and fear associated with TB result in denial of symptoms and delays in care-seeking. Healthcare providers and policymakers/managers felt discouraged by system constraints to provide 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 with miners a care delivery system to better meet their needs.