Estigma da comunidade e da pessoa acometida pela hanseníase no cenário de endemicidade em municípios no sudoeste da Bahia

Abstract

Leprosy is an infectious, contagious, chronic, and curable disease. It is highly relevant in Brazil due to its capacity to cause physical disability and stigma. The term stigma is considered a deeply discrediting attribute, bringing signs that seek to highlight a moral status of those who present them and distance themselves from common and acceptable aspects of a society. Thus, leprosy control involves overcoming stigma, due to its potential to interfere with self care, mental health, and surveillance of its social network. Global and national strategies of confrontation have inserted in their goals the overcoming of this attribute. The present study aimed to analyze the stigma of the community and the person affected by leprosy in endemic settings in southwestern Bahia. This was a cross-sectional study with a population of people diagnosed with leprosy between 2001 and 2021, household contacts, social contacts as well as people from the community at risk for Chagas disease, all living in the municipalities of Anagé, Tremedal and Vitória da Conquista in southwestern Bahia. In the first step, a bibliographical and scientometric research was carried out using the descriptors: leprosy, Mycobacterium leprae, stigma and scale, with their respective translations into English. The searches included the databases Scopus®, Pubmed®, Web of Science® and Dimensions® with subsequent analysis and visualization of scientometric networks. In the second step, we sought to characterize the community stigma related to leprosy in the municipalities of the study. The Stigma Explanatory Model Interview Catalogue for Community Members (EMIC- CSS) scale was used. Finally, in the third stage, the stigma of the person affected by leprosy was investigated. This was done using the Explanatory Model Interview Catalogue Stigma Scale for persons affected by leprosy (EMIC-AP). In the last two steps, we used an instrument to collect information related to the socioeconomic and demographic conditions of the participants. The results of the first stage indicated an increase in the number of studies on the measurement of stigma in leprosy using scales globally from 2010. Most studies originated from Asia (n=27; 64.3%), with Indonesia (n=14; 28.7%) as the country of occurrence. Of the 153 people who responded to the EMIC-CSS, 148 demonstrated the presence of stigma (96.7%; 95% CI 92.5-98.9%). Similarly, of the 95 people who participated in the EMIC- 11 AP, most showed self-stigma and/or perceived stigma (n=85; 89.5%; 95%CI 87.3-91.7%). With EMIC-AP, significant importance of stigma related to female gender (p=0.016), low education (p=0.007) and unfavorable economic background (p=0.045) was evidenced. It evidenced the global growth of investigations on the measurement of stigma in leprosy through the use of scales, although with limited participation of research groups originating from endemic contexts. The results with the application of the scales, highlight the presence of stigma associated with leprosy in the community studied, as well as the manifestation of self-stigma and/or perceived stigma among individuals affected by the disease. These findings reinforce the imperative need to adopt comprehensive and integrated approaches in the care of people affected by leprosy, while intensifying the importance of reducing the stigma related to the disease, promoting inclusion, equality and social participation of these individuals. This perspective is supported by the Global Leprosy Strategy 2021- 2030 entitled "Towards zero leprosy", the fourth pillar of which consolidates the commitment to combat stigma and ensure full respect for human rights