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

Abstract

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 follow-up 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 self-help 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.