Assessing the Attitudes and Perceptions of Community Members and Health Workers Regarding Leprosy Stigma

Abstract

Aims: To examine the attitudes and the perceptions of community members and health workers towards leprosy, to study possible determinants of stigma and to provide baseline data for those who are interested in launching de-stigmatising interventions. Study Design: Cross-sectional survey using mixed methods Place and Duration of Study: Raj Pracha Samasai Institute and Chaiyaphum province, Thailand, March- August 2011. Methodology: The study was done using qualitative and quantitative methods in four districts. Interview guidelines, a predefined script and the Explanatory Model Interview Catalogue (EMIC) stigma scale were used as data collection tools. For qualitative data collection, community members were selected by maximum variation sampling based on sex, age and socio-economic status; health workers were selected by including those who were present at the sub-district health promotion hospital at the time of interviewing, and those who were responsible for leprosy and tuberculosis at the district hospital. Focus Group Discussions were conducted among health volunteers who were also community members and had people affected by leprosy in the areas in which they worked. For quantitative data collection, community members were selected by systematic sampling. Health workers were selected by convenience sampling. Content analysis was used for qualitative information. A t-test, a Chi square and multiple regressions were used for quantitative data. A p-value of <0.05 was considered indicative of a statistically significant difference or association. Results: An equal number of community members and health workers was enrolled (n=236). There was significant difference at the 5% level (p=0.007, Chi2 test) between the proportion of community members and of health workers who perceived stigma related to leprosy in the community (75.4% and 85.6%, respectively). A statistically significant association was found between age, education, number of family members and type of house, and those who perceived stigma. All 24 community members, four health volunteers and two health workers in the qualitative sample linked leprosy with disability, while none of the community members or health volunteers knew the cause of leprosy. All thought it to be incurable. Fifteen community members thought leprosy is hereditary. Seventeen community members and two health workers linked leprosy with dirtiness. One out of the two health workers linked leprosy with oozy and bad-smelling wounds. It was also found that people affected avoided social contact, attended health services as little as possible, and experienced negative interaction from others in the community, health workers included. Conclusion: In the perception of community members and health workers leprosy is a disabling disease that is incurable and hereditary, and is associated with dirtiness and oozy and bad-smelling wounds. These negative perceptions may result in reduced quality of life for those affected and hamper their access to health care services. The authors propose that de-stigmatising interventions be prioritised, taking local beliefs, attitudes, and perceptions into consideration.