Addressing Stigma Related to Leprosy: Lessons from an Intervention Study in Thailand.

Aims: This study was conducted to develop de-stigmatising interventions aiming to reduce stigma related to leprosy; to improve the quality of life of the people affected; and to draw out lessons on how to set up such interventions elsewhere. Study Design: Intervention study. Place and Duration of Study: Raj Pracha Samasai Institute and Chaiyaphum province, Thailand, April 2011-December 2012. Methodology: De-stigmatising interventions were carried out by 3 different groups, namely a formal health care group, a local volunteer group and a self-help group. A baseline survey was done using both qualitative and quantitative methods. Qualitative data collection was conducted through semi-structured interviews with people affected with leprosy (n=19), community members (n=24) and health workers who were responsible for leprosy and tuberculosis at a district hospital (n=2), and those who were present at a sub-district promotion hospital at the time of interviewing (n=6). One focus group discussion was conducted among health volunteers who had people affected by leprosy in the areas for which they were responsible (n=6). For the quantitative data collection, community members and health workers were interviewed using the Explanatory Model Interview Catalogue (EMIC) stigma scale. To track the course of the interventions, two sets followup enquiries were conducted. People affected by leprosy, people with other disabilities, health volunteers, local volunteers, nurses, health workers and administrative officers were interviewed. Focus group discussions were held with health volunteers, with local volunteers and with the selfhelp group members. Content analysis was used to analyse qualitative data. A T-test, a Chi-square test and multiple linear regression analysis were used to analyse quantitative data. Observation was also conducted to evaluate the outcomes of self-care practice of people affected by leprosy. Results: Full participation of people affected by leprosy was found in interventions implemented by the self-help group, while little and no participation was found in those of the local volunteer and the formal health care group respectively. Self-esteem and social participation of the self-help group’s beneficiaries changed more than that of the local volunteer group, while there was no change in those taking part in the formal health care group. Conclusion: The findings support the study hypothesis that emphasises the importance of participation of different stakeholders. To maximise the likelihood of significant changes in attitudes, tailor-made education needs to be conducted to address negative attitudes and stigma perceptions found in the course of pre-intervention assessment.

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

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 badsmelling 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.

The Effectiveness of De-stigmatising Interventions.

Aims: This study on leprosy was conducted to assess the effectiveness of the destigmatising interventions which were launched by three different groups of people. Study Design: Cross-sectional survey. Place and Duration of Study: Raj Pracha Samasai Institute and Chaiyaphum province, Thailand, May 2013. Methodology: The study was done in three districts of Chaiyaphum province, Thailand. Community members and health workers were interviewed using the Explanatory Model Interview Catalogue (EMIC) scale. Frequency tables were used to describe the percentage of respondents who perceived stigma. A p-value of <0.05 was considered indicative of a statistically significant difference. A t-test was applied to compare between the mean EMIC score of community members and health workers before and after interventions. Results: It was found that de-stigmatising interventions involving affected persons resulted in a measurable reduction of perceived stigma related to leprosy among community members and health workers. In the area of a self-help group (SHG) significant reductions were found in the mean EMIC score after interventions. There was no reduction of negative attitudes and perceived stigma either among community members or health workers in the area where de-stigmatising interventions were launched by a formal health care group. A high percentage of people with perceived stigma were still found in all areas (ranging from 77 to 85 %). Conclusion: Involving the community and people affected themselves in de-stigmatising interventions, and tailor-made education are keys to success in reducing stigma related to leprosy. Sustaining of the intervention is important to ensure a gradual reduction of stigma in the long run.