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Green Pastures Hospital for leprosy patients in Pokhara Nepal, was established in 1957 by the International Nepal Fellowship (INF) in a decade which saw the establishment of many similar hospitals in other leprosy endemic countries. In recent years, mainly due to significant improvements in leprosy control services and the wide implementation of multiple drug therapy (MDT) for all patients, many of these specialist hospitals have encountered 1) a decline in prevalence rate, 2) a large decline in the percentage of patients presenting with WHO grade 2 disability, 3) a decline in the previous indications for hospital admission, e.g. immunologically mediated reactions, and 4) a need to develop financial independence making them less dependent on donor agencies. In addition, the decision to change from specialist to general services opened up the possibility of using facilities and expertise for the rehabilitation of non-leprosy affected persons, whilst also moving towards the reduction of stigma and prejudice against patients with leprosy. This paper describes the process of 'transformation' of an established and well known leprosy hospital in Western Nepal from 1997 onwards into a general rehabilitation hospital. Careful preparation, with full involvement of existing staff and co-operation with other agencies in the hospital catchment area were key factors in what has now become a successful venture. Surgical procedures and orthopaedic appliance services for non-leprosy affected persons have increased in recent years and the introduction of a dermatology service has resulted in out-patient attendance rising from about 1000 in 1999 to 4500 in 2003. No evidence of reluctance to attend and use the facilities offered by this hospital because of stigma against leprosy has been encountered. Many of the changes described have been made in order to reduce financial dependence on donor sources of support, but the underlying reason for transformation is still based on the vision of the INF mission to work for and improve the condition of the marginalized in society.
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PMID:Transformation of a leprosy hospital in Nepal into a rehabilitation centre: the Green Pastures Hospital experience. 1641 7

This paper focuses primarily on the extent to which a Stigma Elimination Programme (STEP) affected the social participation of people affected by leprosy in southern Nepal. The Participation Scale (popularly known as The P Scale) was applied to compare leprosy affected people who participated in STEP groups with a control group comprising leprosy affected people who lived in villages where STEP had not been implemented. It was found that STEP participants had significantly higher levels of participation compared with controls and that their levels of social participation were higher than would be expected even for the general population. It was also found that leprosy affected people without visible deformity or ulceration (whether in the STEP group or not) do not appear to suffer participation restriction in southern Nepal.
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PMID:STEP: an intervention to address the issue of stigma related to leprosy in Southern Nepal. 1641 11

After successful control of the endemic of leprosy in Shandong Province, China, how to deal with ex-leprosy patients living in the leprosy villages/leprosaria has become a hot topic among programme managers, medical staff and governmental officials at different levels. One of the possible solutions in dealing with the problem was proposed to combine small leprosy villages into a few larger, already existing, leprosaria/leprosy villages with better facilities, in order to provide better care for ex-leprosy patients and make better use of existing resources. With this assumption, social, economic and medical needs felt by ex-leprosy patients in three leprosy villages of Shandong province were assessed qualitatively, and the possibilities and obstacles regarding combination were explored. The results showed that the basic needs for living, such as food and clothes, were provided by state governments, although living standards remained at a low level. Medical care was not satisfactory, as many health problems related and unrelated to leprosy were increasing, and self-care needed to be addressed, as the dependents grew older and the disability status became worse. Although the majority of ex-leprosy patients, medical staff and government officials interviewed agreed with the idea of the adjustment of leprosy villages/leprosaria, some obstacles, including stigma, existed. Government commitment, ideally at top level, was needed in order to facilitate the process of combination.
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PMID:Qualitative assessment of social, economic and medical needs for ex-leprosy patients living in leprosy villages in Shandong Province, The People's Republic of China. 1641 13

The roles of literacy and gender in enhancing help seeking behaviour in leprosy need further research in order to maximize the effectiveness of health education programmes. A study on leprosy knowledge and attitudes was carried out in Uttar Pradesh, one of the hyper endemic states for leprosy in north India, on a random sample of 130 leprosy patients, 120 non-leprosy patients, and 150 community members. A questionnaire was prepared, tested and administered in Hindi, the local language, by a qualified interviewer. Statistical analyses were done in each group by gender and literacy, and compared. Almost everyone in the three groups knew of leprosy, but only a larger proportion of leprosy patients (60%) mentioned anaesthetic patch, as compared to about 20% or less in the other groups. A vast majority in all groups mentioned bad blood, or divine curse as the cause. Even among leprosy patients, less than 10% of illiterates and only about 40% of literates cited infection as the cause of leprosy. Literates had a better, though still quite a poor knowledge on the symptoms as well as the causation of leprosy. However, almost all stated that leprosy was curable, though they couldn't mention MDT specifically. They felt that not all patients need have deformity. About 20-30% of the leprosy affected, but nearly 50-60% in the other groups stated that there was discrimination. Nearly 70% felt that leprosy affected social participation, over 90% attributing this to adverse social stigma. Multivariate analyses, adjusted for sex, confirmed the significant association of literacy with both knowledge and attitudes. In the light of massive health education and IEC campaigns, the findings from this study are disappointing. Adult literacy programmes combined with more innovative focused approaches to suit various target audiences can impact knowledge and attitudes better.
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PMID:Knowledge of and attitudes to leprosy among patients and community members: a comparative study in Uttar Pradesh, India. 1671 91

Deformity seen in children with leprosy has not often been studied, as the disease itself is less common in children. Deformity, being synonymous with the stigma of leprosy, is a definite social problem in children. In this study we have focused on the burden of deformity in children with leprosy, and various factors responsible for the deformities are discussed. We have observed an incidence of 10.5% of Grade II deformities in children with leprosy, which is very high compared to the community rate of 1.4%. Various factors which contributed significantly to the deformities in our study were: increasing age of children, delay in accessing health care, multiple skin lesions, multibacillary disease, smear positivity, multiple nerve involvement, and reaction at the time of presentation to the hospital. Logistic regression analysis showed that children with thickened nerve trunks had 6.1 times higher risk of developing deformities compared to those who did not have nerve enlargement. Children with the above risk factors should be followed up more frequently so as to detect any deformity as early as possible.
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PMID:Visible deformity in childhood leprosy--a 10-year study. 1683 Jun 33

This essay explores how the concept of social marketing can be employed to change attitudes towards leprosy. Firstly, the concept of social marketing is discussed, then the attitudes that people have about leprosy, the stigma that people with leprosy and their families may face, and the detrimental effects that this can have on their lives. The effect of knowledge and education on attitudes towards leprosy is discussed, as this can be a key component of social marketing campaigns. Various methods of social marketing used to change attitudes and reduce stigma are examined, such as mass media campaigns, school based education, methods which involve community leaders, and the integration and improvement of leprosy services. Principles of social marketing which can lead to the success of campaigns such as incorporating local beliefs are emphasized. The success of the social marketing campaign in Sri Lanka is described, which aimed to remove the fear of leprosy, and to encourage patients to seek and comply with treatment. Finally, it is argued that social marketing, used correctly, can be highly effective at changing community attitudes towards leprosy, reducing stigma and improving the lives of patients, who become able to seek treatment sooner as they lose their fear of stigmatization.
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PMID:Can social marketing approaches change community attitudes towards leprosy? 1689 65

This study used the narrative analysis method to explore stories told by Taiwanese women who had suffered from leprosy. Twenty-one women from a leprosarium, a long-term care centre, and the community participated in either focus group discussions or individual interviews. The age range for the participants was 54-88, with an average of 68 years old. Physical impairments and disabilities of the participants included skin scars, claw fingers, drop feet, amputated legs, and facial disfigurement. Their stories were analysed in two phases: structural and holistic content analyses. Structural analysis identified four life stages: before being diagnosed, after being diagnosed, living with leprosy, and the future. Holistic content analysis uncovered common themes in each life stage. Findings indicated that stigma was experienced throughout the life course of these women. At this stage of life, these women were facing not only physical impairments and disabilities from the leprosy, but also the usual chronic health problems of the elderly. This study suggests that prevention and treatment of leprosy-related physical impairments and chronic diseases are important.
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PMID:From contagious to chronic: a life course experience with leprosy in Taiwanese women. 1689 66

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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PMID:Measuring health-related stigma--a literature review. 1713 68

In many health conditions, people are severely affected by health-related stigma and discrimination. A literature review was conducted to identify stigma-reduction strategies and interventions in the field of HIV/AIDS, mental illness, leprosy, TB and epilepsy. The review identified several levels at which interventions and strategies are being implemented. These are the intrapersonal, interpersonal, organizational/institutional, community and governmental/structural level. Although a lot of work has been carried out on stigma and stigma reduction, far less work has been done on assessing the effectiveness of stigma-reduction strategies. The effective strategies identified mainly concentrated on the individual and the community level. In order to reduce health-related stigma and discrimination significantly, single-level and single-target group approaches are not enough. What is required is a patient-centred approach, which starts with interventions targeting the intrapersonal level, to empower affected persons to assist in the development and implementation of stigma-reduction programmes at other levels.
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PMID:The fight against stigma: an overview of stigma-reduction strategies and interventions. 1713 71

This paper presents a perspective on stigma as an effect of leprosy. It identifies some of the strengths and weaknesses of current approaches to stigma reduction in leprosy and presents a rationale for considering alternative strategies. It is suggested that models used to explain health behavior in developed societies are inappropriate for explaining leprosy stigma or for developing strategies to address it. The author recommends due consideration of the alternative logic that characterizes cultural belief systems in countries where leprosy is a challenge. Criticism of the common practice of information dissemination as a strategy to address leprosy stigma is defended and the merits and limitations of an integrated health service in India is discussed. The author defends the suggestion that the principal objective of stigma interventions should be "normalization". An example of a Nepalese project based on empowerment theory is given to demonstrate how the transformation of identity from outcast to positive change agent, can effect "normalization".
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PMID:Interventions to address the stigma associated with leprosy: a perspective on the issues. 1713 73


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