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      Factors Affecting Perceived Stigma in Leprosy Affected Persons in Western Nepal

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          Abstract

          Background

          There are various factors which construct the perception of stigma in both leprosy affected persons and unaffected persons. The main purpose of this study was to determine the level of perceived stigma and the risk factors contributing to it among leprosy affected person attending the Green Pastures Hospital, Pokhara municipality of western Nepal.

          Methods

          A cross-sectional study was conducted among 135 people affected by leprosy at Green Pastures Hospital and Rehabilitation Centre. Persons above the age of 18 were interviewed using a set of questionnaire form and Explanatory Model Interview Catalogue (EMIC). In addition, two sets of focused group discussions each containing 10 participants from the ward were conducted with the objectives of answering the frequently affected EMIC items.

          Results

          Among 135 leprosy affected persons, the median score of perceived stigma was 10 while it ranged from 0–34. Higher perceived stigma score was found in illiterate persons (p = 0.008), participants whose incomes were self-described as inadequate (p = 0.014) and who had changed their occupation due to leprosy (p = 0.018). Patients who lacked information on leprosy (p = 0.025), knowledge about the causes (p = 0.02) and transmission of leprosy (p = 0.046) and those who had perception that leprosy is a severe disease (p<0.001) and is difficult to treat (p<0.001) had higher perceived stigma score. Participants with disfigurement or deformities (p = 0.014), ulcers (p = 0.022) and odorous ulcers (p = 0.043) had higher perceived stigma score.

          Conclusion

          The factors associated with higher stigma were illiteracy, perceived economical inadequacy, change of occupation due to leprosy, lack of knowledge about leprosy, perception of leprosy as a severe disease and difficult to treat. Similarly, visible deformities and ulcers were associated with higher stigma. There is an urgent need of stigma reduction strategies focused on health education and health awareness programs in addition to the necessary rehabilitation support.

          Author Summary

          A total of 135 leprosy affected persons were interviewed with a questionnaire containing EMIC questions designed to assess the level of perceived stigma and the questionnaire containing variables for socio-demographic characteristics, knowledge about leprosy and the clinical presentations of the participants. Clinical presentation as disability was graded according to WHO guidelines, where grade 0 means no disability found, grade I means loss of sensation has been noted in the hand or foot while grade II means visible damage or disability. Total EMIC score was analyzed between sub-variables to see the factors associated with the higher level of perceived stigma score. Additionally, among the total participants, we included 20 of them who were admitted at hospital for various reasons. Two sets of focus group discussions were conducted with additional questions to derive the reasons behind frequently affected EMIC stigma domains. The factors associated with higher perceived stigma score were illiteracy (those who could not read and write), perceived economical inadequacy, lack of knowledge on leprosy, the perceptions as difficult to treat and severe disease and presence of visible deformities and ulcers. Considering our findings pertaining to higher perceived stigma, there is an urgent need of stigma reduction strategies which should focus on health education about leprosy that can change the perceived stigma in leprosy.

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          Most cited references14

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          Measuring health-related stigma--a literature review.

          Stigma related to chronic health conditions such as HIV/AIDS, leprosy, tuberculosis, mental illness and epilepsy is a global phenomenon with a severe impact on individuals and their families, and on the effectiveness of public health programmes. To compare stigma measurement in different disciplines, a literature review was conducted. References were obtained through a search of literature databases and through examining relevant bibliographies. Sixty-three papers were selected that addressed the issue of measurement of stigma or related constructs and that contained a sample of the instrument or items used. Five unpublished studies were also included in the review. The aspects of health-related stigma used for assessment can be grouped in five categories. First, the experience of actual discrimination and/or participation restrictions on the part of the person affected; second, attitudes towards the people affected; third, perceived or felt stigma; fourth, self or internalized stigma; and fifth, discriminatory and stigmatizing practices in (health) services, legislation, media and educational materials. Within each of these areas, different research methods have been used, including questionnaires, qualitative methods, indicators and scales. The characteristics of the instruments considered most promising are described and compared. The purpose of stigma assessment is to increase our understanding of stigma and its determinants and dynamics, to determine its extent or severity in a given setting or target group and to monitor changes in stigma over time. The conclusions from this review are that (a) the consequences of stigma are remarkably similar in different health conditions, cultures and public health programmes; (b) many instruments have been developed to assess the intensity and qualities of stigma, but often these have been condition-specific; and (c) development of generic instruments to assess health-related stigma may be possible. To achieve this aim, existing instruments should be further validated, developed or adapted for generic use, where possible.
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            The quality of life, mental health, and perceived stigma of leprosy patients in Bangladesh.

            The present study aims to determine the quality of life (QOL) and general mental health of leprosy patients compared with the general population, and evaluate contributing factors such as socio-economic characteristics and perceived stigma. A total of 189 patients (160 outpatients, 29 inpatients) and 200 controls without leprosy or other chronic diseases were selected from Dhaka district, Bangladesh, using stratified random sampling. A Bangladeshi version of a structured questionnaire including socio-demographic characteristics-the Bangla version of the World Health Organization Quality of Life Assessment BREF (WHOQOL-BREF)-was used to assess QOL; a Self-Reporting Questionnaire (SRQ) was used to evaluate general mental health; the Barthel Index to control activities of daily living (ADL); and the authors' Perceived Stigma Questionnaire was used to assess perceived stigma of patients with leprosy. Medical records were examined to evaluate disability grades and impairment. QOL and general mental health scores of leprosy patients were worse than those of the general population. Multiple regression analysis revealed that factors potentially contributing to the deteriorated QOL of leprosy patients were the presence of perceived stigma, fewer years of education, the presence of deformities, and a lower annual income. Perceived stigma showed the greatest association with adverse QOL. We conclude that there is an urgent need for interventions sensitive to the effects of perceived stigma, gender, and medical conditions to improve the QOL and mental health of Bangladeshi leprosy patients.
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              Measuring leprosy-related stigma - a pilot study to validate a toolkit of instruments.

              Stigma negatively affects the quality of life of leprosy-affected people. Instruments are needed to assess levels of stigma and to monitor and evaluate stigma reduction interventions. We conducted a validation study of such instruments in Tamil Nadu and West Bengal, India. Four instruments were tested in a 'Community Based Rehabilitation' (CBR) setting, the Participation Scale, Internalised Scale of Mental Illness (ISMI) adapted for leprosy-affected persons, Explanatory Model Interview Catalogue (EMIC) for leprosy-affected and non-affected persons and the General Self-Efficacy (GSE) Scale. We evaluated the following components of validity, construct validity, internal consistency, test-retest reproducibility and reliability to distinguish between groups. Construct validity was tested by correlating instrument scores and by triangulating quantitative and qualitative findings. Reliability was evaluated by comparing levels of stigma among people affected by leprosy and community controls, and among affected people living in CBR project areas and those in non-CBR areas. For the Participation, ISMI and EMIC scores significant differences were observed between those affected by leprosy and those not affected (p = 0.0001), and between affected persons in the CBR and Control group (p < 0.05). The internal consistency of the instruments measured with Cronbach's α ranged from 0.83 to 0.96 and was very good for all instruments. Test-retest reproducibility coefficients were 0.80 for the Participation score, 0.70 for the EMIC score, 0.62 for the ISMI score and 0.50 for the GSE score. The construct validity of all instruments was confirmed. The Participation and EMIC Scales met all validity criteria, but test-retest reproducibility of the ISMI and GSE Scales needs further evaluation with a shorter test-retest interval and longer training and additional adaptations for the latter.
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                Author and article information

                Contributors
                Role: Editor
                Journal
                PLoS Negl Trop Dis
                PLoS Negl Trop Dis
                plos
                plosntds
                PLoS Neglected Tropical Diseases
                Public Library of Science (San Francisco, USA )
                1935-2727
                1935-2735
                June 2014
                5 June 2014
                : 8
                : 6
                : e2940
                Affiliations
                [1 ]TB/HIV Department, Medecins Sans Frontieres Holland, Nasir Hospital, Nasir, South Sudan
                [2 ]College of Public Health Sciences, Chulalongkorn University, Bangkok, Thailand
                [3 ]Rissa Legesenter, Rissa, Norway
                [4 ]Department of Microbiology, Manipal College of Medical Sciences, Pokhara, Nepal
                [5 ]Green Pastures Hospital and Rehabilitation Centre, Pokhara, Nepal
                Common Heritage Foundation, Nigeria
                Author notes

                The authors have declared that no competing interests exist.

                Conceived and designed the experiments: BA NK RSC SR PR. Performed the experiments: BA NK RSC SR PR. Analyzed the data: BA NK RSC. Contributed reagents/materials/analysis tools: BA NK RSC PR. Wrote the paper: BA NK SR PR. Translation of questionnaire: BA SR PR. Ethical Permission: BA PR.

                Article
                PNTD-D-14-00291
                10.1371/journal.pntd.0002940
                4046961
                24901307
                1a999ec1-e1df-4288-8101-502d36f7f152
                Copyright @ 2014

                This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 19 February 2014
                : 30 April 2014
                Page count
                Pages: 8
                Funding
                The authors received no specific funding for this study.
                Categories
                Research Article
                Medicine and Health Sciences
                Social Sciences

                Infectious disease & Microbiology
                Infectious disease & Microbiology

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