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

Area of Science:

• Public Health
• Social Science
• Infectious Disease Epidemiology

Background:

• Leprosy-related stigma significantly impacts individuals and communities, affecting treatment adherence and quality of life.
• Understanding community knowledge and perceptions is crucial for developing effective stigma reduction strategies.

Purpose of the Study:

• To explore knowledge and perceptions of leprosy in endemic communities in Sulawesi, Indonesia, within the context of the MetLep trial.
• To assess the levels of community and institutional stigma associated with leprosy.

Main Methods:

• A mixed-methods cross-sectional study combining quantitative (NLR Perception Toolkit, EMIC-Community Stigma Scale, Social Distance Scale) and qualitative (semi-structured interviews, focus group discussions) approaches.
• Data collected from 402 participants, including individuals affected by leprosy, close contacts, community members, and healthcare workers.

Main Results:

• Low mean knowledge scores regarding leprosy symptoms, cause, and transmission, with prevalent misconceptions (e.g., hereditary, animal feces, sexual contact).
• Significant community and institutional stigma identified, with the local term "kandala" carrying negative socio-cultural connotations.
• Qualitative data revealed complex, context-specific experiences of stigma, care-seeking barriers, and social exclusion.

Conclusions:

• Substantial gaps in leprosy knowledge and high levels of stigma necessitate targeted, context-specific educational and public health interventions.
• Addressing leprosy stigma requires sustained political commitment, adequate funding, and stigma-sensitive approaches to improve healthcare access and reduce social exclusion.