NLR, Amsterdam, The Netherlands.
Erasmus MC, University Medical Center, Rotterdam, The Netherlands.
PLoS Negl Trop Dis. 2021 Jan 21;15(1):e0009031. doi: 10.1371/journal.pntd.0009031. eCollection 2021 Jan.
Understanding how knowledge, attitudes and practices regarding leprosy differ in endemic countries can help us develop targeted educational and behavioural change interventions. This study aimed to examine the differences and commonalities in and determinants of knowledge, attitudes, practices and fears regarding leprosy in endemic districts in India and Indonesia.
A cross-sectional mixed-methods design was used. Persons affected by leprosy, their close contacts, community members and health workers were included. Through interview-administered questionnaires we assessed knowledge, attitudes, practices and fears with the KAP measure, EMIC-CSS and SDS. In addition, semi-structured interviews and focus group discussions were conducted. The quantitative data were analysed using stepwise multivariate regression. Determinants of knowledge and stigma that were examined included age, gender, participant type, education, occupation, knowing someone affected by leprosy and district. The qualitative data were analysed using open, inductive coding and content analysis. We administered questionnaires to 2344 participants (46% from India, 54% from Indonesia) as an interview. In addition, 110 participants were interviewed in-depth and 60 participants were included in focus group discussions. Knowledge levels were low in both countries: 88% of the participants in India and 90% of the participants in Indonesia had inadequate knowledge of leprosy. In both countries, cause, mode of transmission, early symptoms and contagiousness of leprosy was least known, and treatment and treatability of leprosy was best known. In both countries, health workers had the highest leprosy knowledge levels and community members the highest stigma levels (a mean score of up to 17.4 on the EMIC-CSS and 9.1 on the SDS). Data from the interviews indicated that people were afraid of being infected by leprosy. Local beliefs and misconceptions differed, for instance that leprosy is in the family for seven generations (Indonesia) or that leprosy is a result of karma (India). The determinants of leprosy knowledge and stigma explained 10-29% of the variability in level of knowledge and 3-10% of the variability in level of stigma.
Our findings show the importance of investigating the perceptions regarding leprosy prior to educational interventions in communities: even though knowledge levels were similar, local beliefs and misconceptions differed per setting. The potential determinants we included in our study explained very little of the variability in level of knowledge and stigma and should be explored further. Detailed knowledge of local knowledge gaps, beliefs and fears can help tailor health education to local circumstances.
了解麻风病相关知识、态度和实践在流行国家的差异有助于我们制定有针对性的教育和行为改变干预措施。本研究旨在探讨印度和印度尼西亚流行地区麻风病相关知识、态度、实践和恐惧的差异和共性及其决定因素。
采用横断面混合方法设计。纳入麻风病患者、密切接触者、社区成员和卫生工作者。通过访谈式问卷，我们使用 KAP 量表、EMIC-CSS 和 SDS 评估知识、态度、实践和恐惧。此外，还进行了半结构式访谈和焦点小组讨论。采用逐步多元回归分析定量数据。知识和污名的决定因素包括年龄、性别、参与者类型、教育、职业、认识麻风病患者和地区。使用开放式、归纳式编码和内容分析法分析定性数据。我们对 2344 名参与者（46%来自印度，54%来自印度尼西亚）进行了问卷调查。此外，对 110 名参与者进行了深入访谈，对 60 名参与者进行了焦点小组讨论。两个国家的知识水平都较低：印度的 88%和印度尼西亚的 90%的参与者对麻风病的认识不足。在两个国家中，麻风病的病因、传播途径、早期症状和传染性最不为人知，而麻风病的治疗和可治性则最广为人知。在两个国家中，卫生工作者的麻风病知识水平最高，社区成员的污名水平最高（EMIC-CSS 平均得分高达 17.4，SDS 平均得分高达 9.1）。访谈数据表明，人们担心感染麻风病。当地的信仰和误解不同，例如，麻风病在家族中会遗传七代（印度尼西亚）或麻风病是业力的结果（印度）。麻风病知识和污名的决定因素解释了知识水平变化的 10-29%和污名水平变化的 3-10%。
我们的研究结果表明，在社区开展教育干预之前，调查麻风病的认知非常重要：尽管知识水平相似，但当地的信仰和误解因环境而异。我们研究中纳入的潜在决定因素仅能解释知识和污名水平变化的很小一部分，需要进一步探讨。详细了解当地的知识差距、信仰和恐惧，可以帮助针对当地情况调整健康教育。
