Exploring leprosy perceptions in South Sulawesi, Indonesia: A mixed-methods study on knowledge, attitudes, practices, and stigma

Leprosy-related stigma has a profound impact on affected individuals and their communities. Embedded within the MetLep trial of adjunctive metformin for multibacillary leprosy, we explored knowledge and perceptions of leprosy in endemic communities in Sulawesi, Indonesia. We conducted a mixed-methods cross-sectional study using interview-administered questionnaires and qualitative methods. Quantitative data were collected using the 'NLR Perception Toolkit', including a knowledge-questionnaire, the EMIC-Community Stigma Scale (EMIC-CCS) and the Social Distance Scale (SDS). Semi-structured interviews (SSIs) and focus group discussions (FGDs) were conducted to gain in-depth insights into perceived stigma, fears related to leprosy, care-seeking behaviour and access to healthcare. Quantitative data were analyzed using descriptive and multivariate analyses, while qualitative data were analyzed using inductive coding and content analysis. A total of 402 participants completed the questionnaires: 75 affected by leprosy (18.7%), 126 close contacts (31.3%), 150 community members (37.3%), and 51 healthcare workers (12.7%). Most participants were female (75.6%), with a median age of 42.0 years (IQR 32.3-52.0). Twenty-five individuals participated in SSIs and FGDs. Mean knowledge-score was low (3.0; SD 2.0; range 0-9), particularly regarding leprosy symptoms, cause, and transmission. Misconceptions included hereditary transmission and transmission through animal feces, sexual contact, or intercourse during menstruation. Mean EMIC-CSS and SDS scores were 11.2 (7.1; 0-28) and 8.7 (4.1; 0-21), respectively, with the highest stigma levels among community members. Qualitative findings revealed that care seeking experiences and perceived stigma were complex and context specific. Leprosy was locally referred to as "kandala", a term with negative socio-cultural connotations, and was often associated with witchcraft, sinful behavior, and moral transgression. Persons affected by leprosy reported community rejection, social exclusion, and avoidance of physical contact. Institutional stigma persisted within national leprosy programs. Addressing leprosy stigma requires context-specific, stigma-sensitive educational and public health interventions, supported by sustained political commitment and adequate funding.