Perception of leprosy patients towards the disease in a tertiary care hospital of high prevalent district in West Bengal, India: A qualitative study

Background: Leprosy is a disease having tremendous social implications due to ostracization. Despite continuous efforts made so far to eliminate leprosy, stigma/misbeliefs/adverse attitude toward leprosy still prevails among common people. Community perceptions and attitudes towards leprosy patients are critical and unique indicator of how society stereotypes leprosy. Aims: The qualitative study was conducted to explore the perceptions of leprosy patients towards leprosy. Materials and Methods: Two focused group discussions (FGDs) with 19 newly-diagnosed leprosy patients who can speak vernacular were conducted with help of a predetermined FGD-guide between April and June 2019 in the dermatology out-patient department of the tertiary-care center. Both FGD sessions were recorded, transcribed, and translated into English. These verbatims were thematically analyzed and emerging themes were identified with illustrative quotations. Free list and pile sort data obtained were analyzed by Visual Anthropac version 1.0 software for Smith's salience value Cognitive mapping with two-dimensional scaling and hierarchical cluster analysis. Results: Small size of wound, not giving importance, failure to realize, bad luck and scared of being isolated etc., were the most common reported perceptions. Overall, five themes emerged after pile sorting, namely ignorance about the disease, stigma and economic burden, positive perception after diagnosis, treatment-related suggestions, and myths and frequently asked questions. Conclusion: The study concludes that more IEC campaigns are required to abolish the stigma; and ASHA workers/front-line workers can play a pivotal role. The program (NLEP) can also utilize the role of satisfied cured-patient as peer-educator to improve the attitude of society towards this disease.