Assess The Lived Experiences, Overall Stigma And Quality Of Life Among People Affected With Leprosy Of Selected District East Champaran, Bihar

Abstract

Introduction: Leprosy is a curable disease but stigma associated with it destroys lives. However people adopt with the situation but, it has significant impact on quality of life.

Objectives: The aim of the study was to assess the lived experiences, overall stigma and quality of life among leprosy affected people.

Method: A mixed method (concurrent triangulation) research design was used. 45 participants were selected by using purposive sampling techniques to assess overall stigma and QOL by using SARI stigma scale & WHO BREIF-QOL scale respectively. Lived experiences were assessed using semi-structured open-ended questionnaire. Sample size for qualitative data was depending on data saturation which was achieved after data collection from 15 participants. Data was collected from participants at leprosy welfare associations of selected district “East Champaran” by using interview method. Data of quantitative part was analysed using descriptive (frequency, percentage, mean and standard deviation) and inferential (Karl Pearsson, ANOVA and chi square) statistics and of qualitative part was analysed using Colaizzi method.

Results: Study result revealed 41.82±5.22 mean score of overall stigmas 72.46±9.16 of quality of life. In different aspects of stigma participant had experienced stigma with mean score 17.48±2.60, disclosure concerns with mean score 7.73±1.49, internalized stigma with mean score 5.73±2.48 and anticipated stigma with mean score 10.86±0.78. In QOL overall finding showed 23(51.1%) participants with moderate QOL followed by 21 (46.7%) with low QOL and then 1 (2.2%) with high QOL. According to share lived experiences five themes were identified that are initial attitude towards illness, signs and symptoms, challenges faced, supports and reintegration. Significant correlation between overall stigma and quality of life with “r” value 0.36 and “p” value is 0.01 was found.

Conclusion: It was concluded that participant faced significant stigma which affects their quality of life.