Thilakavathi S, Manickam P, Mehendale S M
National Institute of Epidemiology, ICMR, 2nd Main Road, TNHB, Ayapakkam, Chennai.
Indian J Lepr. 2012 Jul-Sep;84(3):233-40.
As the leprosy burden has declined considerably, we need to understand the current social status of the disease and patients. A qualitative study was conducted in a rural community near Chennai in Tamil Nadu, between March and October 2011. In-depth interviews with 72 leprosy patients from 25 villages and 3 focus group discussions (FGDs) with 26 women from 3 villages were conducted using a guide. The qualitative data were grouped into different domains and analysed. Most of them did not have basic knowledge on leprosy; instead there were misconceptions on cause and spread of leprosy. Nearly one third of the patients had not disclosed about the disease to their spouse, family members, relatives or friends for fear of social rejection, discrimination and ill treatment. In all, more than half of them had self-stigma and, most of them who had deformity faced actual stigma by way of disowning, isolation and social rejection. Many patients, particularly PB cases had the behavior of "denial". FGD women reported of self and actual stigma, particularly towards deformity and disfigurement, for fear of getting infected. Stigma among patients with deformity, and denial of the disease among PB cases, were highlighted. Importance of awareness programmes to remove misconceptions related to cause and spread of the disease was stressed. Need for person-centered social treatment was suggested for increased case detection.
由于麻风病负担已大幅下降，我们需要了解该疾病及患者当前的社会状况。2011年3月至10月期间，在泰米尔纳德邦金奈附近的一个农村社区开展了一项定性研究。使用一份指南，对来自25个村庄的72名麻风病患者进行了深入访谈，并与来自3个村庄的26名妇女进行了3次焦点小组讨论。定性数据被归类到不同领域并进行了分析。他们中的大多数人对麻风病没有基本知识；相反，对麻风病的病因和传播存在误解。近三分之一的患者因担心被社会排斥、歧视和虐待而未向配偶、家庭成员、亲属或朋友透露病情。总体而言，超过一半的患者有自我污名化，其中大多数有畸形的患者面临着被抛弃、孤立和社会排斥等实际污名。许多患者，尤其是结核样型麻风病患者有“否认”行为。焦点小组讨论中的女性报告了自我污名和实际污名，特别是对畸形和毁容的污名，因为担心被感染。突出了畸形患者中的污名以及结核样型麻风病患者对疾病的否认。强调了开展提高认识项目以消除与疾病病因和传播相关误解的重要性。建议采用以患者为中心的社会治疗方法以提高病例发现率。
