Perceptions of Hansen's Disease in Northeast Brazil: A Community‐Based Study Integrating Stigma, Empowerment, and Social Distance

Perceptions of Hansen's disease (HD) can influence the level of stigma, empowerment, and intention to distance oneself from those affected by the disease. Knowledge, attitudes, and beliefs shape these perceptions. This study aims to understand perceptions of HD regarding stigma and empowerment. METHOD: A cross-sectional, mixed-methods research design was employed in endemic communities in the State of Ceará. The instruments were applied to people affected by HD, their contacts, community members, and health workers (including nurses, doctors, dentists, psychologists, occupational therapists, and others), as well as Community Health Agents (CHAs). The study assessed socio-demographic status, beliefs, knowledge, attitudes, and practices (KAP). Individual stigma was measured using the Explanatory Model Interview Catalogue - EMIC-AP; community stigma using the EMIC Community Stigma Scale - EMIC-CSS; social distance using the Social Distance Scale - SDS; and empowerment using the Empowerment Scale - ES. Semi-structured interviews and five focus group discussions were also conducted. Quantitative data were analyzed using descriptive statistics and multivariate regression. Qualitative data were analyzed using thematic analysis. FINDINGS: A total of 1,309 participants were included in the study: 203 people affected, 251 contacts, 350 community members, 302 CHAs, and 203 high-level health workers. A total of 89 qualitative interviews (in both municipalities) and five focus groups (in each municipality) were conducted. Items relating to knowledge of the cause, transmission, and duration of the disease were the lowest-scoring items, especially among community members, who also had the lowest average HD knowledge score and the highest average score on the social distancing scale. Community Health Agents (CHAs) reported more stigmatizing attitudes in the EMIC-CSS than community members did. Those affected perceived a high level of stigma and had low levels of empowerment. CONCLUSION: The community had poor knowledge of HD and exhibited negative attitudes towards affected individuals; stigma is still present today. This study highlighted the need for community health education and ongoing education from healthcare professionals. Health education plays an essential role in HD. There is also a need for strategies to overcome stigma and prejudice, and to improve understanding of the disease beyond its biological aspects.