Magnitude and determinants of leprosy-related stigma among persons affected by leprosy and community contacts in southern Benin: a mixed-methods study

Abstract Background leprosy remains a highly stigmatized disease, despite being curable, with stigma contributing to delayed diagnosis, social exclusion, and reduced quality of life among affected individuals. This study aimed to assess the magnitude and factors associated with leprosy-related stigma, distinguishing between self-stigma among people affected and perceived stigma among their contacts in the Zou department of Benin. Methods we conducted a cross-sectional analytical study using a convergent mixed-methods approach. The study included former multibacillary leprosy patients registered between 2013 and 2023, their close contacts living within a 100-meter radius, and community members. Quantitative data were collected using ODK Collect between October 2024 and February 2025. Self-stigma and perceived stigma were assessed using the standardized Explanatory Model Interview Catalogue (EMIC) scale. Given the skewed distribution of stigma scores, median (50th percentile) quantile regression was used to identify associated factors. Results a total of 92 people affected by leprosy and 343 close contacts were included. Median stigma scores were 13.5 (IQR: 17.5) among affected individuals and 18 (IQR: 10.5) among close contacts, indicating a substantial burden of stigma, particularly at the community level. Among affected individuals, active screening (β = 14, p < 0.001) and late diagnosis (β = 10, p < 0.001) were associated with higher self-stigma scores. Additionally, participants residing in rural areas had significantly higher perceived stigma levels compared to those in urban settings (p = 0.03). Conclusions these findings suggest that stigma is shaped not only by individual disease experiences but also by social and structural factors, including screening practices and community context. Targeted interventions in rural areas that incorporate appropriate sociocultural approaches and involve also former leprosy patients are essential for limiting the psychosocial consequences of leprosy and promoting more humane and inclusive care.