Introduction: Leprosy is a chronic, infectious disease resulting in serious disability when left untreated. Early detection, diagnosis and treatment of the disease is often hampered by leprosy-related stigma. In Chandauli District relatively high incidence and prevalence rates are reported, thus here community education, complementary to other interventions, is implemented. Education, however, is only effective if adapted to the local reality. Therefore, the goal of this study was to provide a deeper understanding of the prevailing perceptions about leprosy, including leprosy-related stigma in Chandauli District, to develop locally appropriate, tailor-made education.
Methods: A cross-sectional study with a survey design, incorporating mixed-methods was conducted among 371 leprosy-unaffected community members. Participants were asked to complete a knowledge questionnaire, supplemented with the leprosy-adjusted EMIC-CSS and SDS. Additionally, semi-structured interviews were conducted with community members and local health care workers.
Results: A significant lack of knowledge or incorrect knowledge regarding the cause, symptoms, timeline and controllability of leprosy was reported amongst community members in Chandauli District. Furthermore, relatively high levels of negative attitudes were found, as over 94% of all participants harboured negative attitudes towards leprosy-affected people. Educational, religion, profession and knowing someone with leprosy significantly influenced these levels of negative attitudes, whereas age and gender did not. Marriage was most affected by leprosy-related stigma, from both a community and individual point of views. Also, an inverse relationship between leprosy-related knowledge and negative attitudes is reported here.
Discussion and conclusion: Community education should focus on increasing correct leprosy-related knowledge and decrease misconceptions. It is recommended to complement educational sessions with the involvement of stereotype-defeating persons affected by leprosy, visualization exercises and one-on-one counselling, to decrease leprosy-related stigma and to generate empathy. Additionally, regional key persons and religious leaders should be involved in community education, to enhance a change in attitudes. If necessary, gender-specific educational sessions could be organised. The use of visual material is necessary to circumvent illiteracy amongst community members. Local beliefs, such as those in the effectiveness of Ayurvedic medicine, should not be disregarded, but should be integrated into education.