Therapeutic workshops and psychosocial rehabilitation for institutionalised leprosy patients.

Leprosy is still a major public health problem and psychosocial rehabilitation services for patients suffering from the disease remain insufficient. This study aimed to assess the impact of therapeutic workshops on quality of life and symptoms of depression among institutionalised leprosy patients. The Beck Depression Inventory (BDI) and generic World Health Organization Quality of Life questionnaire (WHOQOL-BREF) were used before and after the implementation of a series of therapeutic workshops over a period of six months. Sixty-two patients participated in the study. Almost all of the sample were elderly and had a low level of education. There was a significant reduction in the symptoms of depression scores after the intervention (p < 0,001) and a positive impact was shown for the psychological (p = 0,001), physical (p = 0,03) and environment (p < 0,001) domains, but not for the social relationships (p = 0,124) domain. Therapeutic workshops appear to a useful tool for psychosocial rehabilitation work with leprosy patients.

Oficinas terapêuticas para a reabilitação psíquica de pacientes institucionalizados em decorrência da hanseníase / Therapeutic workshops and psychosocial rehabilitation for institutionalised leprosy patients

A hanseníase ainda constitui um importante problema de saúde pública e as ações de promoção da reabilitação psíquica dos pacientes ainda são insuficientes. Este estudo se propôs a avaliar o impacto de oficinas terapêuticas sobre a qualidade de vida e sintomas depressivos em pacientes institucionalizados em decorrência da hanseníase. Aplicou-se o Inventário de Depressão de Beck e o instrumento genérico de avaliação da qualidade de vida WHOQOL-bref, antes e após o desenvolvimento de oficinas terapêuticas ao longo de seis meses. Participaram do estudo 62 pacientes, quase todos idosos, com baixa escolaridade. Observou-se uma redução significativa dos escores de sintomas depressivos após a intervenção proposta (p < 0,001) e impacto positivo para os domínios psicológico (p = 0,001), físico (p = 0,03) e de meio-ambiente (p < 0,001), mas não para as relações sociais (p = 0,124). Oficinas terapêuticas parecem ter o potencial de auxiliar na reabilitação psíquica de pacientes institucionalizados em decorrência da hanseníase.

Leprosy is still a major public health problem and psychosocial rehabilitation services for patients suffering from the disease remain insufficient. This study aimed to assess the impact of therapeutic workshops on quality of life and symptoms of depression among institutionalised leprosy patients. The Beck Depression Inventory (BDI) and generic World Health Organization Quality of Life questionnaire (WHOQOL-BREF) were used before and after the implementation of a series of therapeutic workshops over a period of six months. Sixty-two patients participated in the study. Almost all of the sample were elderly and had a low level of education. There was a significant reduction in the symptoms of depression scores after the intervention (p < 0,001) and a positive impact was shown for the psychological (p = 0,001), physical (p = 0,03) and environment (p < 0,001) domains, but not for the social relationships (p = 0,124) domain. Therapeutic workshops appear to a useful tool for psychosocial rehabilitation work with leprosy patients.

O envelhecer institucionalizado de sujeitos sequelados pela Hanseníase da U/E Abrigo João Paulo II / The institutionalized older subjects sequelae by Leprosy of U/E Abrigo João Paulo II

Este estudo objetiva (i) identificar como o estigma da hanseníase se relaciona ao processo de envelhecimento de idosos que foram compulsoriamente asilados, ainda jovens, na Unidade Especial Abrigo João Paulo II, e (ii) analisar a história de vida dos idosos, a partir do relato de suas impressões sobre o envelhecimento. A pesquisa foi realizada na U/E Abrigo João Paulo II, com participação de 12 idosos sequelados pela hanseníase, de idade entre 60 e 94 anos, 50% homens e 50% mulheres, residentes nessa Instituição, selecionados em 2 etapas: análise e avaliação de prontuários e entrevista com os sujeitos, seguindo um roteiro de questionário. Quanto ao nível educacional, apresentam baixo nível de escolaridade, sendo 16,66% analfabetos; e 83,33% com primário incompleto. Em em relação ao vínculo conjugal, observou-se que 75% são viúvos; 16,66%, solteiros; e 8,33%, casados. Destes últimos, 41,66% tiveram filhos biológicos; 25% filhos adotivos; 16,66% filhos biológicos e adotados; e 16,66% não tiveram filhos. O intuito foi ultrapassar o critério estatístico dos dados, e o discurso construído e socialmente aceito em torno da Hanseníase, trazendo vozes que expressam subjetividades, desvelando os diferentes modos de viver o envelhecimento, colaborando na construção de um saber gerontológico interdisciplinar.

Objective: Identify how the stigma of leprosy is related to the aging process of elderly people who were forcibly asylees, still young in the Special Housing Unit John Paul II and analyze the history of life for seniors, from the account of his views on aging . Methodology: The survey was conducted in the Special Housing Unit John Paul II, featuring 12 seniors sequelae by leprosy and residents in this institution. The research had two stages: analysis and evaluation of medical records and interview the subjects selected following a script of the questionnaire. Results and Discussion: There were 12 seniors, aged 60-94 years, 50% men and 50% are women. As for the educational level have low levels of schooling, and 16.66% are illiterate and 83.33% with incomplete primary, and in relation to marital bond was observed that 75% are widowed, single and 16.66% 8.33 % married and 41.66% of those already mentioned have biological children, adopted children 25%, 16.66% biological and adopted children and 16.66% had no children. Conclusion: The aim was to overcome the statistical data, and the discourse constructed and socially acceptable around the leprosy, bringing those voices that express subjectivity, revealing the different ways of experiencing aging, helping to build an interdisciplinary gerontological knowledge.

Translating leprosy: the expert and the public in Stanley Stein's anti-stigmatization campaigns, 1931-60.

This article examines three campaigns through which patient activist Stanley Stein sought to combat the stigmatized connotations of the word "leprosy." In 1931, soon after starting the first patient newspaper at the U.S. national leprosy hospital at Carville, Stein became convinced of the necessity of finding an alternative to "leprosy." His ensuing campaign to promote the use of the words "Hansen's Disease" to describe the condition from which he and fellow Carville patients suffered became his most passionate and life-long project. In the 1950s, Stein became involved in efforts to change the translation of "leprosy" in the Bible. Finally, in 1960, he waged a campaign to de-stigmatize encyclopedia entries on leprosy. These campaigns illustrate how even elevation of the medical expert and a seeming disdain for the public can function as a protest of medical authority and reveal a presumption that a significant degree of authority actually resides with the public.

The prevalence of dementia and depression in Taiwanese institutionalized leprosy patients, and the effectiveness evaluation of reminiscence therapy--a longitudinal, single-blind, randomized control study.

OBJECTIVE: This study investigated the prevalence of depression and dementia in long-term institutionalized older leprosy patients in Taiwan. We then examined the effectiveness of reminiscence group therapy on depressive symptoms and cognitive function in this population. METHODS: We recruited 129 long-term institutionalized older leprosy patients in Taiwan and used the Geriatric Depression Scale-Short Form (GDS-SF), the mini mental state examination (MMSE), and the Clinical Dementia Rating (CDR) scale for outcome measurement. We then conducted a single-blind, randomized, longitudinal quasi-experimental analysis comparing the pre-test and post-test results of two equivalent groups at a 24-week intervention interval. The intervention in the experimental group was three sessions of reminiscence group therapy per week, whereas that in the control group was weekly individual supportive interviews. RESULTS: The prevalence of dementia was 45.7-50.4% according to a CDR score ≥ 0.5 and an MMSE score < 25, and the prevalence of depression was 25% based on a GDS-SF score ≥ 7. According to the Wilcoxon signed-rank test, the GDS-SF scores in the experimental group decreased significantly (p = 0.02) after intervention as compared with that in the control group (p = 0.22), whereas the MMSE scores in both groups remained steady. CONCLUSIONS: The prevalence of dementia and depression in long-term institutionalized older leprosy patients in Taiwan is high. Reminiscence group therapy has been confirmed effective on depression in this population, but its effectiveness on cognitive function requires further verification.

Ocular leprosy in institutionalized Nigerian patients.

OBJECTIVE: This study was aimed at presenting the profile of ocular lesions observed in the in-mates on multidrug treatment, of a leprosy rehabilitation centre in Nigeria. DESIGN: Cross-sectional. METHOD: One hundred patients were selected by systematic random sampling. Sixty-nine had ocular involvement and were the subjects of this study. The age range was 15 to 80 years with a mean age of 51 years. There were 57 males (82.6%) and 12 females (17.4%). The range of duration of treatment was two months to 30 years, with a mean of 15 years. Examination of the anterior and posterior segments of the globe and its adnexa was carried out using Penlight, magnifying loupe and direct ophthalmoscope. Visual acuity was recorded using the Snellen charts. RESULTS: Lepromatous leprosy patients had the greatest incidence of ocular lesions. Ocular lesions were more in patients who have had leprosy for ≥ 15 years. Madarosis (72.5%) and lagophthalmos (29.0%) were the commonest lesions. Corneal involvement was seen in 36.2%. Conjunctivitis in 14.5% . Trichiasis in 10.1% and ectropion in 8.7% . 17.4% were legally blind (VA≤3/60) in the better eye, and 17.4% had cataract in at least one eye. There was no statistically significant difference in the incidence of ocular lesions among males and females, and between patients with Lepromatous and Tuberculoid leprosy. CONCLUSION: Ocular complications are common and sight threatening in leprosy patients. Regular screening and outreach by eye care providers should be incorporated into leprosy care programmes.

Cognitive performance of long-term institutionalized elderly patients with schizophrenia: a case control study / Desempenho cognitivo em pacientes idosos com esquizofrenia: um estudo caso-controle

Cognitive impairment is inherent to the ageing process. Several studies suggest that patients with late-life schizophrenia have more marked cognitive impairment. Objective: The aim of this study was to compare the cognitive performance of elderly institutionalized patients with schizophrenia and institutionalized elderly control patients without neurological or psychiatric diseases, matched for age, educational level and institutionalization time. Methods: The Cambridge Examination for Mental Disorders of the Elderly (CAMCOG) was used to test 10 institutionalized elderly patients with schizophrenia. Results were compared with those of 10 institutionalized control patients with history of Hansens disease. Results: Patients with schizophrenia showed a worse performance in terms of total CAMCOG score and on its subtests of orientation, language, abstraction, and memory. Patients with schizophrenia also disclosed a non-significant trend toward lower scores on the MMSE and on calculus. Conclusion: Findings demonstrated that schizophrenia was associated to worse cognitive impairment in long-term institutionalized elderly patients compared with institutionalized patients without neurological or psychiatric diseases.

Prejuízo cognitivo é inerente ao processo de senescência. Estudos tem sugerido que pacientes idosos com esquizofrenia apresentam esse prejuízo de maneira mais acentuada. Objetivo: O objetivo deste estudo foi comparar o desempenho cognitivo de pacientes idosos com esquizofrenia, institucionalizados, com indivíduos idosos, institucionalizados, sem doenças neurológicas ou psiquiátricas, pareados pela idade, escolaridade e tempo de institucionalização. Métodos: Cambridge Examination for Mental Disorders of the Elderly (CAMCOG) foi aplicado em 10 pacientes, institucionalizados, com esquizofrenia, cujo desempenho cognitivo foi comparado ao de 10 indivíduos, institucionalizados, com história de doença de Hansen. Resultados: Pacientes com esquizofrenia apresentaram um pior desempenho na pontuação total do CAMCOG e em seus subitens orientação, linguagem, abstração e memória. Pacientes com esquizofrenia também apresentaram uma tendência, não significativa, para menor pontuação no MEEM e cálculo. Conclusão: Nossos achados demonstram que a esquizofrenia está associada a piora do comprometimento cognitivo em pacientes idosos com institucionalização de longa permanência comparados a pacientes institucionalizados sem doenças neurológicas ou psiquiátricas.

[The compulsory isolation of Hansen's disease patients: memories of the elderly]. / Isolamento compulsório de portadores de hanseníase: memória de idosos.

From 1924 to 1962, Brazil used compulsory internment of Hansen's disease patients as one of the ways of controlling the disease in the community. After this policy ended, many patients continued to live in these units. The former Asilo Pirapitingui, now the Hospital Dr. Francisco Ribeiro Arantes, is the only old-style asylum for the socially determined internment of those suffering from Hansen's disease. Through recorded and transcribed interviews of eight of those remaining, we sought to learn their history and the meaning of this isolation in their lives. The thematic analysis of the discourse enabled identification of the following analysis categories: Hansen's disease; internment day-to-day life; the institution; current health conditions; and staying in the institution after the end of compulsory internment.

Isolamento compulsório de portadores de hanseníase: memória de idosos / The compulsory isolation of Hansen's disease patients: memories of the elderly

De 1924 a 1962 o Brasil utilizou a internação compulsória de pacientes de hanseníase como controle da doença na comunidade. Com o final dessa política, muitos pacientes continuaram a viver nessas unidades. O Asilo Pirapitingui, hoje Hospital Dr. Francisco Ribeiro Arantes, é a única retaguarda asilar para internação de portadores de hanseníase por indicação social. Obtivemos o relato da história de vida de oito de seus remanescentes, que foram gravados e transcritos. A análise temática desses relatos permitiu a identificação das seguintes categorias: hanseníase; internação; vida cotidiana; a instituição; condições atuais de saúde; e permanência na instituição após a extinção da internação compulsória.

From 1924 to 1962, Brazil used compulsory internment of Hansen's disease patients as one of the ways of controlling the disease in the community. After this policy ended, many patients continued to live in these units. The former Asilo Pirapitingui, now the Hospital Dr. Francisco Ribeiro Arantes, is the only old-style asylum for the socially determined internment of those suffering from Hansen's disease. Through recorded and transcribed interviews of eight of those remaining, we sought to learn their history and the meaning of this isolation in their lives. The thematic analysis of the discourse enabled identification of the following analysis categories: Hansen's disease; internment; day-to-day life; the institution; current health conditions; and staying in the institution after the end of compulsory internment.

La différence: condition of exclusion or of reconnaissance?

From the Middle Ages onto the 19th century, following the trend set in leper hospitals, madness was to be hidden, secluded in dark places, far away from the mainstream of society. The emergence of the mad person, perceived as inevitably different, allows to make the boundaries between reason and folly, between human and inhuman, irrelevant. If leper hospitals have almost emptied out, if there are much fewer confinement facilities, the values and images related to the leper or the mad person, as well as the sense of exclusion, continue to persist. The purpose of this paper is to show clearly that this matter of exclusion is a serious legacy that could very well apply nowadays to other figures that, each in their own way, symbolize menace or mockery. It applies notably to the aged and the dying who both appear as the opposite of modern society and its values of efficiency, productivity and profitability. The multiplication of places where old people are left to die, and the elderly who are crowded in old folks homes, stand as proof of their exclusion from society. Nevertheless, youth and old age coexist, as well as life and death. If care of others is the trait of a humane civilization, must it be understood that barbarism consists in ignoring its own humanity as well as that of others? In view of such practices of exclusion, policy statements based on recognition of human dignity, where ethical obligation rests on recognition of others and humanism, are rather paradoxical. Is this a paradox or a deadlock; a condition of exclusion or of reconnaissance?

Familial transmission of leprosy in post-war Britain--discrimination and dissent.

A Polish immigrant, who was resident in the United Kingdom (UK), presented with lepromatous leprosy and was detained in two hospitals against his wishes in the late 1940s. The public reaction to his diagnosis was remarkable, with street riots and questions in the Houses of Parliament about 'this leper'. His wife was persecuted and had to change her name. The index patient died of tuberculosis during enforced isolation in hospital, and several years later his daughter (who had never left the UK) presented with a left median nerve palsy and probable lepromatous dactylitis of the left third finger, eventually requiring amputation and prolonged dapsone treatment. Her disease resolved slowly but completely. We believe these two familial cases represent the first documented episode of autochthonous leprosy transmission in the UK since the early 1920s. They also demonstrate the ability of this disease to engender fear, dissent and discrimination amongst the public. Parallels are drawn with reactions to the cholera epidemics in nineteenth century Britain, and to HIV/AIDS, SARS and multi-drug resistant tuberculosis in more recent times.

Awareness about the persons with disability act among leprosy patients and other disabled persons.

To assess the level of awareness about the different provisions of the Persons with Disability Act (PWD Act) among leprosy patients and other disabled, 233 disabled persons from the self-help groups formed by Vadathorasalur Leprosy Control Unit have been interviewed using a structured interview checklist. The results show that 74.7% of the respondents were aware that identity cards are available for the disabled, 56.2% were aware of the free education benefit to the disabled, as low as 35.6% were aware of the scholarships, 33% knew about the employment reservations, 24.9% heard about the housing scheme of the government for the disabled, but 24.5% only knew about law against discrimination, 31.8% came in contact with institutions for the severely disabled and only 16% were aware of the unemployment allowance to the disabled. The level of awareness is low among women with regard to all components of the Act. It was found that students studying up to secondary level were not aware of the availability of scholarships and free education, which needs to be seriously looked into, especially by educational institutions. The level of formal education played a significant role in increasing awareness about the Act among literates. The knowledge is low among persons of all occupations. The study showed that there is a great need for an educational intervention programme to publicize the provisions of the Act among the disabled and their families.

[History of Hansen's disease control policy in the United States].

Federal government set up the institutions for the study and treatment of Hansen's disease patients in Hawaii in 1905. Then in 1917, a legislation was made to build a national leprosarium (leper home), authorize the Surgeon General (SG) to receive into that institution any person afflicted with leprosy who presents himself or herself for care, detention, and treatment, or any person afflicted with leprosy duly consigned to said home by the proper health authorities. The National Leprosarium (later renamed as National Hansen's Disease Center) opened in Carville in 1922. Although promin treatment had started in the early 1940s, the Public Health Service Act of 1944 retained the SG's authority for detention and apprehension. Discharge codes were gradually loosened since then, but the efforts to revise the Act were never successful for a long time. It was in 1985 when the Act was abolished. Provision of long-term care for new patients at the Center was terminated finally in 1997.

[Hansen's disease-associated disabilities in sanatoria residents. A study of the actual situation in three sanatoria located in the Setouchi area].

PURPOSE: Clarification of details of Hansen's disease in Japan is important for obtaining an adequate understanding of the present circumstances regarding control and for formulation of specific suggestions for future measures. The average age of residents in national Hansen's disease sanatoria reached 74.9 in May 2002 and most of these suffer from serious disabilities caused by the disease. In order to implement measures facilitating their return to society or secure living in sanatoria, a proper understanding of the residents' physical situation is essential. Therefore, the present study was conducted of residents suffering from Hansen's disease in Japan. METHOD: A direct interview was conducted with all 1282 residents of three sanatoria, located in the Setouchi area: Nagashima-aiseien, Oku-komyoen, and Oshima-seishoen. An investigator visited the rooms of the residents, interviewed them using a questionnaire, which consisted of about 100 items including the OPCS scale, and filled out an answer form. The reply rate was 64%. RESULTS: The average age of the residents was found to be 72.8 years, their average age when they entered the sanatoria was 26.0 years, and the average period of residence was 52.4 years. The damage they suffer as a result of the isolation policy is physical, mental, economical and social. That is to say, their entire life is harmed as a direct result of the Leprosy Prevention Law or the Eugenic Protection Law with discrimination in society and negative effects on their families. Their physical condition features serious disabilities in the use of fingers, as well as in walking and seeing caused by peripheral nerve damage. Such disabilities are related to their age and period of residence, and in addition, these in use of their fingers are related to the work which residents were forced to do in sanatoria. The results indicate that patients' physical condition is related to their age, how long they have had the disease and their work in sanatoria. CONCLUSION: It is clear that previous Hansen's disease control in Japan has caused a great deal of harm, from which it is very difficult to recover so that residents have to live with serious problems. In order to implement measures allowing their return to society or more secure life at sanatoria, sufficient care is needed to treat progressive disabilities caused by ageing and prevent deterioration caused by peripheral nerve damage.

La eliminación de la lepra en el año 2000: ¿qué será de Antonio y Bajamut? / The elimination of leprosy in the year 2000: What will be the fate of Antonio and Bajamut

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Conhecimento cientifico e controle social: a isntitucionalizacao do campo da hanseniase (1897-2000) / ?

Este trabalho analisa as concepcoes e praticas de controle social da hanseniase, mediante estudo das fontes documentais de dominio publico na perspectiva socioconstrucionista da Psicologia Social. O processo de institucionalizacao da hanseniase e analisado a partir da nocao de campo cientifico de Bourdieu e dos conceitos e definicoes cristalizadas em livros, revistas e indices bibliograficos. A perspectiva diacronica aponta as transformacaoes ocorridas ao longo dos anos: do paradigma da hereditariedade ao bacteriano e a imunogenetica atual. A serie historica analisada (1879-2000) mostra o discurso hegemonico, rejeitando os discursos marginais, tratou a doenca, nao o doente, ao qual nao deu voz. A institucionalizacao do campo da hanseniase ocorreu por um movimento mais amplo da Medicina Social

An exile in my own country: the confinement of leprosy patients at the United States National Leprosarium.

Leprosy is a disease which has long been stigmatized and persons afflicted with it have frequently been segregated from the rest of society. This paper focuses on the evolution of policies concerning the confinement of patients at the national leprosarium operated by the United States Public Health Service (PHS) at Carville, Louisiana. After a brief review of the origins of the Lousiana Leper Home, which eventually became the national leprosarium, the paper traces changing attitudes and policies at Carville from 1921, when the PHS took control of the facility, to the 1950s.

[Life satisfaction and its related factors among institutionalized patients at a Hansen's disease sanatorium].

We conducted a questionnaire survey on life styles and health status for 293 patients with Hansen's disease. They were admitted to the wards for disabled and physically able patients of Ohshima Seishoen, in Kagawa prefecture, in 1991. This institution is one of Japan's national leprosy sanitarians. We measured patients' life satisfaction with the Delighted-Terrible Scale. In this report, the distribution of life satisfaction and its associated factors were examined for 210(71.7%) respondents. Factors examined were length of treatment, physical health, and social aspects of life at the sanatorium. The major findings were as follows; 1. The patients aged under 60 had lower proportions of being satisfied with life than those aged 60 or older. The proportions of life satisfaction of the 40-59 age group were 17% for men and 22% for women, while for the 60 or older age groups were 33-44% for men and 41-45% for women. The proportions of life satisfaction in the 60 or older age groups were lower than those of community dwelling elderly persons. 2. We examined factors associated with life satisfaction for the respondents aged 60 or older. Dependence on activities of daily living (ADL) was associated with life satisfaction in some ADL items. Care and aid provided by the staff of the sanatorium may modify the relationship between ADL impairment and life satisfaction. For social aspects of life at the sanatorium, both having networks with family members and having resources other than family were associated with life satisfaction. Going out and positively spending their daily lives were associated with life satisfaction, too. These associations were significant for men. Similar patterns of association were observed for women, but were insignificant. This finding suggests that it is important for the health and medical care staff to pay attention to the social aspects of the life of elderly patients with Hansen's disease.