Background: Global leprosy control has improved concerning detection in the community and better treatment adherence, yet leprosy remains endemic in many countries. Indonesia –with 17202 new cases in 2015 – ranks third after India and Brazil on the list of countries with the highest number of recorded new cases. Despite the existence of adequate treatment that addresses physical aspects of the disease, the stigma attached to leprosy has not been addressed sufficiently. Stigma results in negative perceptions, which in combination with a lack of knowledge affect awareness to act on symptoms and signs of leprosy. Working towards eliminating leprosy-related stigma regarding persons affected by leprosy and their family members should be done with public education interventions suitable for the local context. For this, we need to understand the community perception of leprosy and people affected by leprosy.
Research question This study aims to gain insights into the community perceptions of leprosy and people affected by leprosy, in the Pasuruan district of East-Java as one of the steps towards eliminating leprosy-related stigma affecting persons with leprosy and their family members, through public education interventions suitable for the context of Pasuruan. Gaining insights into perceptions will be done through assessing knowledge, beliefs, attitudes, and behaviour of the community members regarding leprosy in Pasuruan, East Java, Indonesia.
Methods: A cross-sectional mixed-methods study was conducted among community members. The quantitative questionnaires used were: KAP, EMIC-CSS*, and Leprosy adjusted SDS* in the Pasuruan regency, East-Java, Indonesia. Stratified random sampling was used, resulting in the inclusion of 7 sub-regions in which five villages were sampled. In total 350 community members participated in the age range of 18-95. Furthermore, 12 qualitative semi-structured interviews were held with 6 community members and 6 contacts (people who are with leprosy patient over 30 hours per week) who were selected purposively. Data obtained was analysed using descriptive statistics of frequency, distribution tables, means and standard deviation. The knowledge level was calculated. High and low endemic regions were compared. Inferences from the qualitative results were analyzed and used to explain the quantitative results.
Results: The mean EMIC-CSS score was 15,64 (SD: 7,82, [min 0-max 30]). In total, 79,4% of the participants scored above the minimum cut-off value of 8 points. The mean SDS score was 10,25 (SD: 5,31, [min 0-max 21]). Both scores were higher than, or comparable to previous measures in Indonesia, and indicated a high level of stigma in this community. Over half of the study population believed leprosy was a hereditary disorder, a belief that is likely to have a major impact on one’s social position with regards to marriage and family life. Besides that, people perceived leprosy as a disgusting shameful disease, and as a result sometimes discriminative safety measures were taken.
Discussion: The PEP++ project should work together with local community offices, and nonformal education institutions to educate community members about the cause of leprosy. This activity would make their work more sustainable because the misconceptions found are mostly rooted in religious beliefs. Besides education about the cause, stereotypes of severe causes should be weakened. So-called champions could become overt advocates, as a sort of ‘living proof’ or ‘real life cases’ to tackle these negative perceptions and demonstrate the true nature of the disease with the power to change the taboo image of leprosy and negative attitudes from community with it.