Conhecimentos, atitudes, práticas e percepções relativos à hanseníase: perspectivas de estigma, empoderamento e distanciamento social em contextos de hiperendemicidade no Brasil

Abstract

Background: Leprosy represents a neglected chronic infectious condition primarily affecting the nerves, with significant social, economic, and psychological repercussions for affected individuals, their families, and communities. These repercussions are largely justified by the association with physical disabilities, deformities, stigma, discrimination, and prejudice. Thus, understanding perceptions related to the disease, as well as the community's negative attitudes towards leprosy, becomes a strategic action for addressing and analyzing interventions in the field of public health.. Objective: To analyze the knowledge, attitudes, practices, and perceptions related to leprosy in hyperendemic contexts in Brazil. Methods: Community-based cross-sectional study with a mixed-methods approach (quantitative and qualitative) conducted in endemic municipalities in the State of Ceará between 2018-2019. This is the baseline analysis of the PEP++ Program, an international multicenter study evaluating a combined post-exposure chemoprophylaxis regimen for Mycobacterium leprae. The study population included: individuals affected by leprosy, their contacts, community members, healthcare professionals such as doctors, nurses, dentists, and professionals from the Expanded Family Health Center (NASF) and Community Health Agents (ACS). Specific instruments were used for data collection: (a) sociodemographic characterization; (b) knowledge, attitudes, practices, and perceptions (KAPP); (c) individual stigma (Explanatory Model Interview Catalogue - EMICAP); (d) community stigma (EMIC-CSS: Community Stigma Scale); (e) social distancing (SDS: Social Distancing Scale); and empowerment (ES: Empowerment Scale). In addition to the quantitative component, semi-structured interviews and focus group discussions were also conducted to provide a detailed approach to knowledge, attitudes, practices, and perceptions of stigma and empowerment related to leprosy from different perspectives.which will be further explored in other outputs from this research. The sociodemographic profile data were analyzed using descriptive statistics, and all other instruments presented their respective scores by population, considering a 95% confidence interval using multivariate regression. All analyses were conducted using specific databases in the software EpiInfo 7 (US Centers for Disease Control and Prevention - CDC, Atlanta, GA). The qualitative component data were analyzed using thematic analysis, and the transcriptions were anonymized and grouped by study subpopulation. Results: A total of 1,309 participants were included: 203 affected individuals, 251 contacts, 350 community members, 302 CHA (Community Health Agents), and 203 healthcare professionals. A total of 89 qualitative interviews and 5 focus groups were conducted, reaching 79 people within the study subgroups. Knowledge about the cause, transmission, and duration of the disease were the items with the lowest scores, especially among community members, who also had the lowest average knowledge about leprosy and the highest score on the social distancing scale, indicating that community members desired greater social distancing and had a negative attitude towards affected individuals. CHA perceived more stigmatizing attitudes on the EMIC-CSS, followed by community members. Affected individuals perceived a high level of stigma and had low empowerment manifestations, with some affected individuals being unable to identify the cause of their own disease.Conclusion: The community still exhibits low levels of knowledge, even in hyperendemic contexts. Negative attitudes were perceived by all groups, especially the community and ACS, reinforcing the need for interventions that amplify and improve knowledge in these areas. Health interventions focused on these findings are essential to enhance early diagnosis, timely treatment, reduce physical disabilities, and overcome stigma, discrimination, and prejudice. In this perspective, it contributes to enabling affected individuals to live fully in society with better quality and free from stigma.. Keywords: Leprosy; Knowledge; Social Stigma; Prejudice; Empowerment