The contribution of stigma to the transmission and treatment of tuberculosis in a hyperendemic indigenous population in Brazil

Background The Guarani-Kaiowa are Brazil's second-largest indigenous group. Average annual tuberculosis (TB) incidence rates among the Guarani-Kaiowa are nearly 400/100,000 in Mato Grosso do Sul state, ten times the national average. Although stigma is considered crucial for TB control in indigenous communities, few studies have investigated TB stigma among indigenous populations. This study sought to understand the role of TB-related stigma and perceptions of TB in maintaining hyperendemic TB transmission in the Guarani-Kaiowa communities. Methods Various forms of stigma were explored through semi-structured interviews with 19 patients, 11 relatives, and 23 community members. Patients were identified from the registry of the healthcare service. Community members, selected by snowball sampling, were matched by gender and village of residence. Interviews were conducted in Guarani and Portuguese and later translated into English. Framework analysis was performed using NVivo. Results Traditional beliefs of a weakening of the body allowing the disease to enter were common, but the exact mechanism of transmission was unknown. Strong community/public stigma associated TB with uncleanliness, abuse, and irresponsibility. Anticipated stigma led to significant treatment delays for fear of exclusion and losing employment. While most patients felt supported by their families, nearly all patients related experienced/enacted stigma in the community such as gossip, avoidance, and social exclusion, leading to long-lasting internalized/self-stigma. Secondary stigmatization of relatives was widespread, and blanket latent TB infection (LTBI) treatment of patients' households was a contributing factor in treatment delay. The healthcare service unnecessarily added to stigmatization by enforcing separate utensils and sleeping arrangements for patients. Conclusions Our findings suggest that stigma is a driver for treatment delay and continued transmission of TB in the community. The stigmatization of TB was rooted in a poor understanding of TB transmission, partly because of incorrect orientation by the healthcare service. Interventions to reduce TB-associated stigma are urgently needed.