Leprosy perceptions and knowledge in endemic districts in India and Indonesia: Differences and commonalities

Abstract

Background 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. Principle findings 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. Conclusion 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.

Changing perception and improving knowledge of leprosy: An intervention study in Uttar Pradesh, India

“…6SQuID is a pragmatic guide, based on existing frameworks for the development of interventions with a wider public health focus. The main input for the selection of the interventions (content and modes of delivery) came from: a) ‘leprosy perception study’ (Survey 1) of people’s knowledge and perceptions of leprosy and persons affected by leprosy [ 8 , 22 , 24 ], b) a ‘communication needs assessment’, and c) a workshop with input from persons affected by leprosy and other key stakeholders. A detailed description of the selection and development, including the pilot tests, of the interventions can be found as supporting information file ( S1 Text ).…”

“…Half of the health care workers had received training about leprosy and had specific responsibilities for leprosy treatment services. Details about the selection procedure have been published previously [ 8 , 22 ]. Different (randomly selected) participants were included in the first and second survey.…”

“…Participants were interviewed by a trained research assistant at or near their homes, at primary health centers or the district offices of NLR India. Details of Survey 1 have been published previously [ 8 , 22 ].…”

“…Interventions should fit the audience [ 19 ]. They are more likely to be successful if culture-specific and contextualized (adapted to the local context) [ 20 , 21 ], addressing the main causes of leprosy: specific knowledge gaps, beliefs and fears [ 22 ].…”

Towards a cross-neglected tropical disease perception study toolkit: a prototype toolkit developed in the field of leprosy

“…Recently, 'leprosy perception studies' were conducted in endemic districts in Brazil, India, Nepal and Indonesia. 26,[69][70][71][72] The purpose of these studies was to investigate the perceptions regarding leprosy, i.e., the way people see leprosy, what they know about leprosy and their attitudes, beliefs, fears and reported behaviour towards persons affected by leprosy. Information of these studies is used to develop context-specific community education and behaviour change interventions that are implemented to raise awareness about leprosy and to improve knowledge, attitudes and behaviour towards (persons affected by) leprosy in the context of the PEP++ project, a cluster-randomised trial to test an enhanced regimen for postexposure prophylaxis against leprosy.…”