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

Introduction: Since ancient times leprosy has had a negative perception, resulting in stigmatization. To improve the lives of persons affected by leprosy, these negative perceptions need to change. The aim of this study is to evaluate interventions to change perceptions and improve knowledge of leprosy. Methodology/Principal findings: We conducted a pre-post intervention study in Fatehpur and Chandauli districts, Uttar Pradesh, India. Based on six steps of quality intervention development (6SQuID) two interventions were designed: (1) posters that provided information about leprosy and challenged misconceptions, and (2) meetings with persons affected by leprosy, community members and influential people in the community. The effect of the interventions was evaluated in a mixed-methods design; in-depth interviews, focus group discussions, and questionnaires containing a knowledge measure (KAP), two perception measures (EMIC-CSS, SDS) and an intervention evaluation tool. 1067 participants were included in Survey 1 and 843 in Survey 2. The interventions were effective in increasing knowledge of all participant groups, and in changing community and personal attitudes of close contacts and community members (changes of 19%, 24% and 13% on the maximum KAP, EMIC-CSS and SDS scores respectively, p<0.05). In Survey 1, 13% of participants had adequate knowledge of leprosy versus 53% in Survey 2. Responses showed stigmatizing community attitudes in 86% (Survey 1) and 61% (Survey 2) of participants and negative personal attitudes in 37% (Survey 1) and 19% (Survey 2). The number of posters seen was associated with KAP, EMIC-CSS and SDS scores in Survey 2 (p<0.001). In addition, during eight post-intervention focus group discussions and 48 interviews many participants indicated that the perception of leprosy in the community had changed. Conclusions/Significance: Contextualized posters and community meetings were effective in changing the perception of leprosy and in increasing leprosy-related knowledge. We recommend studying the long-term effect of the interventions, also on behavior. Author summary: To improve the lives of persons with leprosy, perceptions about leprosy need to change. The aim of this study is to describe the development and evaluation of interventions (posters and community meetings) to change the perception and improve knowledge of leprosy in Fatehpur and Chandauli districts, India. To measure the effect of the interventions we administered questionnaires before and after the interventions and we conducted 48 interviews and eight group interviews afterwards. In total 1067 participants were included in the first survey and 843 in the second. We found that the interventions resulted in more knowledge of leprosy and in changed community and personal attitudes towards (persons affected by) leprosy. The percentage of participants with adequate knowledge of leprosy was higher in the second survey and the percentage of participants with negative community and personal attitudes was lower. In the interviews, many participants indicated that there had been a change in perception in the community. The more posters participants had seen, the better their knowledge of leprosy and the more positive their attitudes. Findings from this study suggest that contextualized posters and community meetings can be effective in changing the perception of leprosy and increasing leprosy-related knowledge. [ABSTRACT FROM AUTHOR]