ABSTRACT
BACKGROUND: The Guarani-Kaiowá are Brazil's second-largest indigenous group. Average annual tuberculosis (TB) incidence rates among the Guarani-Kaiowá 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-Kaiowá 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.
Subject(s)
Indigenous Peoples/psychology , Social Stigma , Tuberculosis/psychology , Adult , Brazil , Female , Humans , Male , Patient Isolation/psychology , Social Isolation , Tuberculosis/prevention & control , Tuberculosis/therapyABSTRACT
Pohã Ñana: Fortalecimento, território e memória Guarani e Kaiowá é resultado de um amplo processo de diálogo entre o grupo de pesquisa Ambiente, Diversidade e Saúde da Fundação Oswaldo Cruz (Fiocruz) e o povo Guarani e Kaiowá das aldeias Guapo'y (Amambai), Jaguapiré, Guasuty, Kurusu Amba, Tapyi Kora (Limão Verde) e Takuapery, localizadas na região conhecida como cone Sul, no estado de Mato Grosso do Sul (Mapa). Este livro foi elaborado como produto da pesquisa "Práticas tradicionais de cura e plantas medicinais mais prevalentes entre os indígenas da etnia Guarani e Kaiowá, na região Centro-Oeste" e teve como objetivo identificar e descrever as práticas tradicionais de cura e as plantas medicinais mais prevalentes entre os Guarani e Kaiowá. Com isso, nossa intenção é proporcionar aos leitores uma aproximação do conhecimento tradicional Guarani e Kaiowá, a partir dos relatos de experiências ancestrais de ñanderu e ñandesy com o uso de plantas medicinais. Ademais, pretendemos compartilhar com os leitores os aprendizados construídos de modo dialógico com os jovens das aldeias, que se tornaram posteriormente pesquisadores/colaboradores em nosso grupo de pesquisa.
