Hanseníase e estigma no século XXI: narrativas de moradores de um território endêmico

Abstract

For over a decade Brazil has had the world’s second highest number of Leprosy diagnoses, with 1.5 occurrences per 10,000 of population. Early diagnosis, examination of contacts and overcoming stigma are strategies deployed towards tackling this endemic. Despite scientific and technological advances and the existence of a care network within Brazilian’s Unified Health System (SUS), a long-held stigma lingered into the 21st century. The narratives deployed to express the impact of Leprosy derive from a historical process of segregation of the diseased for over two centuries in Brazil. The context for this project is the city of Uberlândia (state of Minas Gerais), regarded as highly endemic for Leprosy. The study was focused on one of the city’s hyperendemic clusters - the district of Lagoinha, outlined in the 1970’s and 80’s by a process of disciplinarisation of the diseased within the urban context. The objective is to understand the meanings derived from narratives regarding stigma, as produced by the region’s dwellers, and its implications on the maintenance of the endemic. This is a qualitative research in the form of case study with a triangulation of methods. Data collection tools were: meetings, home visits, in-depth and semi-structured interviews, focus groups, field diaries, and genograms. Participants were separated into three groups - G1: those who experienced the illness process, notified between 2005 and 2015 (index case); G2: family network of index cases; G3: healthy members of the community without exposure to the disease. Data was interpreted using discourse analysis, a method which according to Foucault raises a range of statements based on discursive formations, which in turn may or may not enable its achievement. Three formations were identified: (un)certainty of cure, persistence of fear, and up-to-dateness of stigma in the segregation. Stigma, be it experienced of presumed, surfaces as a barrier to the communication of diagnosis even amongst those who support the recommendation for examination of contacts. It influences the decision of disclosure to the family network, defining selection criteria often divergent from the clinical criteria. The pain and fear experienced during the diagnostic stage of examination are strongly present in the narratives. The molecular and immunological markers are referenced as a possibility for early diagnosis, and the certainty of cure stimulated by the treatment contrasts with the fear of transmission, of Leprosy reactions and relapse. The genogram of a family nucleus enabled a unique analysis of the “hereditary determination” of the disease. The study points to the importance of appreciating how people understand causes and effects of Leprosy and its influences on decisions related to the disease. The interpretations from patients and the community about the process of illness interfere with treatment, making it necessary to broaden the perspective of care given that the symbolic aspect has not been acknowledged as important for the reproduction of risks, thus being neglected by Brazilian public health policies. Finally, the application of serological diagnoses of the infection from qPCR to identify the DNA of the bacillus would be a great 21st century development in facing the endemic.