Abstract

BackgroundLeprosy remains a major stigmatizing condition. Stigma is a dynamic process resulting from the interaction between physical attributes caused by leprosy and the existing stereotypes in a community. Leprosy has pervasive impacts on all areas of life including psychosocial burden to an individual, social interaction, marriage, and employment. These impacts vary and are largely dependent on a particular culture and community. The main objective of this study was to explore the perceived stigma of leprosy amongst community members and health care providers in Lalitpur district of Nepal.MethodsA total of six focused group discussions (FGDs) with 43 participants from a community living close to Anandaban Leprosy Hospital and ten semi structured interviews (SSIs) with health care providers were conducted between October and December 2016. An interview guide was used for the FGDs and SSIs. All qualitative data were transcribed and translated into English and were thematically analyzed using Atlas.ti software.ResultsVisible deformities due to leprosy was one of the major contributing factors for stigma. Stigma was further exacerbated by an attitude to conceal the disease due to perceived fear of potential discrimination. While over the years, stigma was felt to be decreasing, various aspects of life were still affected by leprosy stigma including marriage, employment and social interaction. This was largely attributed to leprosy and its consequences, specifically the disability and deformity caused by leprosy.ConclusionLeprosy was still perceived to be feared and concealed because of potential discrimination, even within the community that was close to a long established leprosy hospital. Various aspects such as marriage, employment and social interaction were still affected by the stigma which was strongly associated with visible deformities. In addition to ongoing rehabilitation and stigma reduction programs, integrating strategies such as community engagement wherein community and leprosy affected person jointly take a role in stigma reduction programs can be helpful.

Highlights

  • There have been great strides towards leprosy elimination with most cases concentrated in India (60%), Brazil (13%) and Indonesia (8%) which accounted for above 80% of new cases in 2015 [1]

  • A total of six focused group discussions (FGDs) with 43 participants from a community living close to Anandaban Leprosy Hospital and ten semi structured interviews (SSIs) with health care providers were conducted between October and December 2016

  • Stigma was further exacerbated by an attitude to conceal the disease due to perceived fear of potential discrimination

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Summary

Introduction

There have been great strides towards leprosy elimination with most cases concentrated in India (60%), Brazil (13%) and Indonesia (8%) which accounted for above 80% of new cases in 2015 [1]. Apart from the disability caused by leprosy, the perceived stigma towards leprosy affected persons has been found to be persisting in Thailand and Nepal. In Western Nepal, 51% of community members perceived that leprosy affected persons conceal their conditions for fear of ostracization [6]. Leprosy has pervasive impacts on all areas of life including psychosocial burden to an individual, social interaction, marriage, and employment. These impacts vary and are largely dependent on a particular culture and community.

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