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Introduction: To analyze the knowledge, feelings and perceptions involving patients affected by leprosy, as a better understanding of these factors may be useful to decrease the stigma and prejudice associated with the condition., Methods: The study cohort consisted of 94 patients who underwent treatment for leprosy at the Health Units in the City of Cuiabá, Mato Grosso (MT), Brazil. The study questionnaire included items to collect information on socio-demographic data, knowledge about the disease, stigma, prejudice, self-esteem and quality of life of leprosy patients. Bivariate analyses were used to assess the data based on the chi-square test with a 5% significance threshold., Results: The results revealed that the study population consisted predominantly of males (55.3%) with an income between 1 and 3 times the minimum wage (67%). The survey respondents reported that the most significant difficulties related to the treatment were the side effects (44.7%) and the duration of the treatment (28.7%). A total of 72.3% of the subjects were knowledgeable about the disease, of whom 26.6% had the leprosy reaction. Stigma and prejudice were cited by 93.6% of the participants. Based on the responses, 40.4% of patients reported being depressed and sad, and 69.1% of the subjects encountered problems at work after being diagnosed. A total of 45.7% of the patients rated their quality of life between bad and very bad., Conclusions: Our results suggest that leprosy causes suffering in patients beyond pain and discomfort and greatly influences social participation.

Qualitative research whose objective was to understand the social representations of the body by women with alterations caused by leprosy, for nursing care can meet more broadly to your needs. The theoretical framework was the social representations. Forty-three women participated, all of them from a reference unit specialized in sanitary dermatology. Interviews were conducted, which contents were processed by the software ALCESTE, generating a class whose words were associated with preconception anchored in the negative perception of leprosy. The explanatory framework of social representations showed a strong brand of the social memory of leprosy, whose symbolic construction sustains itself on fear of the disease. It was concluded on the need to invest in the deconstruction of archaic beliefs about leprosy so that to have new ways of acting towards the disease.

Background: In the Netherlands, leprosy is a rare and non-endemic disease, still occurring as an 'import disease'. Moreover a considerable group of people affected by leprosy, originating mainly from the former Dutch colonies, suffer from neuropathic complications. This study investigates the social implications of leprosy for those affected in the Netherlands., Methods: Thirty-one people affected were interviewed as well as six medical leprosy experts. The social implications were measured by means of semi-structured interviews and the Participation Scale., Results: Self-stigma, shame and secrecy were often reported. Discrimination and stigmatisation of ex-leprosy patients by people around them seems a less frequent problem. Yet, people affected by leprosy seem to be a forgotten group with a high social burden due to low self-esteem and reduced social participation. Medical experts do not seem to be aware of the severity of leprosy-related forms of stigma in their patients. Ex-leprosy patients lack sound disease-related information and support groups. Due to the low incidence and as a consequence, the lack of awareness among doctors, leprosy patients in the Netherlands are faced with substantial diagnostic delay (mean delay 1-8 years)., Conclusions: Leprosy and its stigma affect the social lives of patients, even in a non-endemic area such as the Netherlands. Almost all respondents were affected by self-stigma. There is a need for 1) more information and support groups for patients, and 2) increased awareness among professionals.

This article sets out to expand the way stigma, and those affected by it, are understood within leprosy discourse and to apply these insights to the analysis of the experiences of leprosy workers. The term stigma is often used simply as shorthand for 'negative social experience'. However, to reduce the negative aspects of complex everyday life experiences to a single word is often overly simplistic and can serve to objectify, rather than illuminate, the experiences of those affected. This article argues that in order to understand the lived experience of stigma we must come to understand stigma as an ongoing, dialectical social process and develop an approach to stigma that analytically separates stigma from its negative social consequences. The article applies these insights to data collected during 14 months of fieldwork with front-line leprosy workers in India, which suggests that falling leprosy prevalence rates and a rapidly changing policy landscape have led to leprosy workers feeling marginalised and stigmatised within their own organisation. The article argues that, rather than seeing stigma merely as a negative process in which leprosy workers are passive victims, we must recognise that stigma also plays a key role in the creation and maintenance of leprosy workers' identity and is utilised as a strategic tool in the struggle for influence between different groups within the organisation. Finally, the article argues for the benefit of expanding our understanding of stigma across public health and of applying these insights to designing future interventions.

If it can be argued that no single attribute or condition (leprosy included) is inherently or universally considered to be 'deeply discrediting,' to quote Goffman, then we must consider how external factors shape stigma associated with that condition in different cultural and socioeconomic contexts. Often, an analysis of what is perceived to be stigma towards people affected by leprosy uncovers other prejudices or stigmatising attitudes associated with class, gender, and/or ethnic inequalities in that society. The movement of people across international borders adds new dimensions to the experience of leprosy, as affected individuals confront different sets of understandings of the disease among healthcare professionals, friends, family, and employers in host and sending countries. Preconceptions of the immigrant 'other' in host countries may be bound up with notions of disease and danger, further complicating the experience of leprosy treatment for immigrants. Drawing on the work of others and on early stage qualitative research on leprosy among Brazilian immigrants to the United States, this paper will consider the ways in which immigration and transnational processes could affect the experience of stigma among immigrants affected by leprosy.

While the experienced or enacted stigma may be the same for all health related stigma, in terms of isolation, discrimination and social participation restrictions of the affected persons; the concept and origin of stigma varies from one disease to another. An understanding of the cause of stigma is, therefore, essential to formulate effective strategies for its reduction/elimination. This is especially imperative in the case of leprosy where the basis of stigma is significantly different from other health related stigma. In this paper, a comparison is made between the concept and origin of leprosy stigma with that of other stigmatised diseases.

Objective: This paper proposes a mechanism by which socio-economic rehabilitation (SER) reduces stigma in northern Nigeria following are-analysis of the transcripts of interviews conducted to evaluate the impact of SER on leprosy-related stigma., Design: The evaluation combined quantitative questionnaire (P-scale) with qualitative interviews of 20 individuals affected by leprosy, five focus group discussions and 10 key informant interviews. From our data, we developed a leprosy-related stigma framework by integrating emerging themes with the construct of threat to group functioning to describe stigma processes experienced by people affected by leprosy in northern Nigeria., Results: Findings revealed people affected by leprosy are less likely to be stigmatised because of leprosy impairments than for their incapacity to contribute to family/community finances. We also identified micro-credit loans and vocational training as elements of SER for reducing stigma through the mechanism of protecting individuals against the loss of social value, and by facilitating their continued engagement in daily social roles in the family/community., Conclusion: We propose that SER stimulates attitudinal change towards, and inclusion of people affected by leprosy by protecting individuals against the loss of social value and increasing their contributive capacity. We recommend further empirical testing of the proposed framework to ascertain its utility in other cultures.

Leprosy in the ancient world involved quarantine from family and society and great stigma. Similarly, mental illness today can involve separation, lost potential, and stigma. As with leprosy, most people misunderstand etiology, treatment, and prognosis in mental illness. Nurses are in a key position to educate, intervene, and improve mental health outcomes.

This manuscript addresses the role and contribution of people affected by Hansen's disease (leprosy), especially through the efforts of Zen-Ryo-Kyo, the National Hansen's Disease Sanatoria Residents' Association, in changing laws and attitudes in Japan since the 1950's. Health social movements are discussed in the Japanese context and more broadly. An important contribution of this manuscript is the explanatory description of the activities of Zen-Ryo-Kyo in achieving change through addressing issues related to social stigma and discrimination. The argument is made for expanding the scope of social movements to include all stigmatised illnesses and disabilities. Another significant point discussed is the need to move beyond defining Hansen's disease in medical and legal terms, and to redefine it as a public health and social issue to be solved.

In response to the call for a new Science of Stigma, this anthropological study investigates the moral experience of patients diagnosed with severe multibacillary leprosy. From 2003 to 2006, fieldwork was conducted in the so-called 'United-States-of-Sobral', in Ceará State, Northeast Brazil. Sobral is highly endemic for leprosy, despite intensified eradication efforts and a 30% increase in primary care coverage since 1999. Of 329 active leprosy cases at two public clinics, 279 multibacillary patients were identified and six information-rich cases selected for in-depth ethnographic analysis, utilizing illness narratives, key-informant interviews, home visits, participant-observation of clinical consultations and semi-structured interviews with physicians. A 'contextualized semantic interpretation' revealed four leprosy metaphors: a repulsive rat's disease, a racist skin rash, a biblical curse and lethal leukemia. Far from value-free pathology, the disease is imbued with moral significance. Patients' multivocalic illness constructions contest physicians' disease discourse. 'Skin Spot Day' discriminates more than educates. Patients' 'non-compliance' with effective multi-drug therapy is due to demoralizing stigma more than a rejection of care. 'Social leprosy' in Northeast Brazil deforms patients' moral reputations and personal dignity.

This paper explores how iatrogenic stigma, or stigma that is produced through a patient's encounter with physicians or with biomedicine in general, might emerge in outpatient treatment for Hansen's disease, or leprosy. Based on in-depth interviews with people affected by Hansen's disease and observations conducted at several public health clinics in Rio de Janeiro, Brazil, this research identified several aspects of the biomedical encounter that generated or contributed to stigma, either felt or enacted. Also noted in the research were positive examples of techniques used by physicians and health care workers for minimizing or circumventing stigma. The paper touches upon several topics, such as culturally mediated responses to medication side effects and communication between health care workers and patients, that might be salient or useful for health educators and others who are attempting to reduce health-related stigma.

This study is a qualitative research with a socio-historic approach whose objective was to know the prejudice and stigma lived by the institutionalized patients/residents with hanseniase. To achieve this goal, three patients were intervewed who lived in a colony hospital during the research period, utilizing the oral history method. Data were collected and were further analysed, utilizing the stigma referencial. The results indicated that after the entry in the institution, these patients got their family bonds broken, lost their rights as citizens, regarding the situation, they took upon a new life, in a new environment. Concluding that, the nosocomial isolation for a long period of time (years of confinement and dismissal), caused the symbolic death of many patients that lived with the hope to cohabit with family and/or society.

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.

One thousand two hundred sixteen people living in 6 representative municipalities in Havana City were surveyed in order to know what they knew about leprosy and how these patients are perceived by them. The purpose was to ascertain if the community was prepared to help them to their adaptation to a socially useful life, which is one of the tenets of the Program for the Control of this disease. It was proved that only 10% had the necessary knowledge about leprosy and the remaining 90% had wrong notions about it. It is concluded that the community is not prepared for bringing about a change in the present status of this condition.