Isolamento social, sociabilidades e redes sociais de cuidados / Social isolation, sociability and social care networks

Este trabalho examina, em caráter exploratório, experiências de isolamento social vividas por indivíduos portadores de hanseníase, internados na ex-colônia Tavares de Macedo, em Itaboraí, onde foram mantidas da década de 1930 até os dias de hoje, para problematizar noções sobre segregação e discriminação social presentes nesse meio. Para tanto, examina sociabilidades e redes sociais de cuidados estabelecidas na vida em comum nessa "ex-colônia de leprosos", quase sempre como alternativas às condições oferecidas pelos sistemas públicos de proteção social. Faz isso com base em narrativas de alguns desses sujeitos, vistos em suas diferenças - nas interseções das relações por sexos, classes, raças/etnias, gerações, e também por religiões e graus de escolaridade. Recorre à história oral, modo de oferecer novas interpretações qualitativas de processos histórico-sociais evidenciados nessas sociabilidades e redes, nem sempre visíveis como formas singulares de proteção social da vida em comum.

This exploratory work examines the social isolation experienced by individuals with leprosy admitted to the former colony Tavares de Macedo, Itaboraí, where they were kept from the 1930s until the present day, to question notions of segregation and social discrimination present in this environment. So it analyzes sociabilities and social care networks established in the common life in this "ex-leper colony," usually as alternatives to the conditions offered by the public systems of social protection. The work is based on stories of some of the subjects, seen in their differences - at intersection of gender relations, classes, races/ethnicities, generations and also by religions and educational backgrouns. It adopts the oral history, so as to offer new qualitative interpretations of social and historical processes shown in these networks and sociability, not always visible as unique forms of social protection of life in groups.

The history of a leprosy sanatorium in India. A literature review.

OBJECTIVE: Karigiri was set up initially to be a sanatorium with a difference, and the objective of this review is to study whether this had been achieved. METHODS: A broad search of 43 various publications from Karigiri. RESULTS: Stigma towards leprosy lead to the creation of this sanatorium, and within 20 years of its existence it made a significant contribution to the knowledge and treatment of this disease through research, and provided skilled manpower for both India and other developing countries.

[The Hospital-Colónia Rovisco Pais: the last Portuguese leprosarium and the contingent universes of experience and memory]. / O Hospital-Colónia Rovisco Pais: a última leprosaria portuguesa e os universos contingentes da experiência e da memória.

The Hospital-Colónia Rovisco Pais was inaugurated in Portugal in the 1940s for the treatment, study and prophylaxis of leprosy based on the compulsive internment model, whose configuration reflects the total institution concept proposed by Goffman. It concerns an important hygiene project of the Estado Novo. Its educative paradigm combined elements inspired in European social medicine and the ideology of the paternalistic Portuguese dictatorial regime. The Hospital Colony here will be thought of as a disciplinary dispositive, developing considerations regarding the confrontation between disciplinary power and experience. Memory emerges as a contingent instrument to access the practices and interstitial meanings woven into the Hospital Colony's daily life, seeking to find out about the experience of its former patients as political subjects.

The leprosy asylum in India: 1886-1947.

Writing against a historical practice that situates the leprosy asylum exclusively within prison-like institutions, this article seeks to show the variation in leprosy asylums, the contingencies of their evolution, and the complexity of their designs, by devoting attention to the characteristics of the leprosy asylum in India from 1886 to 1947, in particular to the model agricultural colony. Drawing upon the travel narratives of Wellesley Bailey, the founder of the Mission to Lepers in India, for three separate periods in 1886, 1890-91, and 1895-96, it argues that leprosy asylums were formed in response to a complex conjunction of impulses: missionary, medical, and political. At the center of these endeavors was the provision of shelter for persons with leprosy that accorded with principles of good stewardship and took the form of judicious use of donations provided by benefactors. As the Mission to Lepers began to bring about improvements and restructuring to asylums, pleasant surroundings, shady trees, sound accommodation, and good ventilation became desirable conditions that would confer physical and psychological benefits on those living there. At the same time, the architecture of the asylum responded to economic imperatives, in addition to religious and medical aspirations, and asylums moved towards the regeneration of a labor force. Leprosy-affected people were increasingly employed in occupations that contributed to their sustenance and self-sufficiency, symbolically reincorporating the body damaged by leprosy into the economic world of productive relations.

O Hospital-Colónia Rovisco Pais: a última leprosaria portuguesa e os universos contingentes da experiência e da memória / The Hospital-Colónia Rovisco Pais: the last Portuguese leprosarium and the contingent universes of experience and memory

O Hospital-Colónia Rovisco Pais foi inaugurado em Portugal na década de 1940, com vistas ao tratamento, estudo e profilaxia da lepra, de acordo com modelo de internamento compulsivo, cuja configuração remete ao conceito de instituição total proposto por Goffman. Trata-se de um importante projeto higienista do Estado Novo. O seu paradigma educativo combinava elementos inspirados na medicina social europeia e na ideologia do regime ditatorial paternalista português. O Hospital-Colónia será aqui ponderado como dispositivo disciplinar, desenvolvendo-se reflexão acerca do confronto entre o poder disciplinar e a experiência. A memória emerge como instrumento contingente para o acesso às práticas e aos significados intersticiais tecidos no quotidiano do Hospital-Colónia, buscando-se auscultar a experiência de seus ex-doentes como sujeitos políticos.

The Hospital-Colónia Rovisco Pais was inaugurated in Portugal in the 1940s for the treatment, study and prophylaxis of leprosy based on the compulsive internment model, whose configuration reflects the total institution concept proposed by Goffman. It concerns an important hygiene project of the Estado Novo. Its educative paradigm combined elements inspired in European social medicine and the ideology of the paternalistic Portuguese dictatorial regime. The Hospital Colony here will be thought of as a disciplinary dispositive, developing considerations regarding the confrontation between disciplinary power and experience. Memory emerges as a contingent instrument to access the practices and interstitial meanings woven into the Hospital Colony's daily life, seeking to find out about the experience of its former patients as political subjects.

[An effort to discontinue the use of verbal change of shift reports in a workplace with both nursing staff and personal support workers--encouraging independent information collection by personal support workers].

The change of shift report is of great importance in nursing in order to ensure the continuity of care, transfer information among nurses, and to ensure the transfer of responsibility from one shift to the next. In workplaces where nursing staff work together with personal support workers, it is important for staff to have common access to patient information in order to be able to use the information practically and carry out their individual responsibilities and roles. Until now, nursing staff and personal support workers collaborated and combined information for the verbal change of shift report, but the role of the personal support worker was in practice, more passive. Beginning 3 years ago, nurses began planning training sessions to educate personal support workers to increase their practical abilities. Through the training, personal support workers learned how to leave accurate patient records and nursing staff and personal support worker staff began to use a joint flow sheet to keep a record of patient information. This written record became the means of communication, making the verbal change of shift report redundant. As a result of trying to discontinue the verbal change of shift reports, personal support workers began to collect information more independently, and began to practice care more intentionally. In addition, the understanding of the role of the personal support worker deepened, the ability to care for patients improved, and it also led to better cooperation between nursing staff and personal support workers.

Hanseníase: Qualidade de vida dos moradores da area social do Instituto Lauro de Souza / Leprosy: quality of life of the inhabitants of the social area of the institute Lauro of Souza Lima

A qualidade de vida e um tema que vem despeertando interesse na comunidade cientifica, sendo definida pela Organizaçao Mundial de Saude como: "percepçao do individuo da sua posiçao na vida, no contexto da cultura e no sistema de valores nos quais vive e em relaçao aos seus objetivos, expectativas, padroes e preucupaçoes" (WHOQOL GROUP, 1994). Este estudo tem como objetivo avaliar a qualidade de vida (QV) dos que foram portadores de hanseniase curados, e teve alta e nao retornaram ao convivio familiar e social. E exploratorio descritivo e foi realizado na Area Social do Instituto Lauro de Souza Lima, no periodo de abril a maio de 2005. A amostra foi constituida de 36 moradores e o instrumento de coleta de dados foi a versao abreviada do World Health Organization Quality Of Life (WHOQOL-100), o WHOQOL-bref, que e composto por 26 questoes divididas em quatro dominios. A analise dos dados foi quantitativa, realizada por estatistica descritiva e aplicaçao do Teste de Quiquadrado, e qualitativo, utilizando a Tecnica de Entrevista em Grupo focal. Os resultados quanto a satisfaçao da QV foram estabelecidos em quatro dominios: no dominio 1: fisico, que aborda a dor, tratamento medico, energia, locomoçao, capacidade funcional e laboral o resultado foi de 33,3 a 52,7 por cento, no dominio 2: psicologico, que abrange o sentido da vida, concentraçao, aparencia fisica, satisfaçao consigo mesmo e sentimentos negativos, as respostas variaram de 33,3 a 68,3 por cento, no dominio 3: relaçoes sociais, que refere as relaçoes sociais, sexuais, e apoio dos amigos o resultado, variou de 47,2 a 68,3 por cento e por fim no dominio 4: meio ambiente, que fala sobre segurança, ambiente fisico, dinheiro, informaçoes, lazer, condiçoes de moradia, meio de transporte e serviços de saude, ficou entre 30,5 e 77,7 por cento.Nos quatro dominios a maioria das questoes foi estatisticamente significante para p<0,05. Na tecnica de entrevista em grupo focal foi confirmado o resultado obtido anteriormente. A aplicaçao de outros instrumentos de QV nesta clientela possibilitara novas comparaçoes.

Delineating disease: self-management of leprosy identities in South India.

The national and international agencies working to eliminate leprosy are also dominant in setting the boundaries of official discourse on the issue. Within these boundaries the disease is commonly represented as a medical problem with negative social consequences, and it is believed that both problem and consequences will be resolved if leprosy is eliminated and its victims treated and (if necessary) reintegrated within their social groups. For those affected by leprosy the issues are frequently different, elimination in some respects representing a problem as much as a solution. Against this background, which I describe with reference to a group of leprosy-affected people in South India and their position vis- -vis leprosy organizations, I explore some of the contexts in which leprosy patients actively manage their own situations, often in defiance of prevailing development orthodoxies. I conclude that closer observation and analysis of the strategies patients use to manage their disease status have important policy implications.

[Vicissitudes of treating leprosy handicaps in Kapolowé, Zaïre]. / Vicissitudes du traitement des handicaps hanséniens à Kapolowé (Zaïre).

In 1990 Kapolowé was, without a doubt, the site of the only surgical centre in Zaire dealing with handicaps which developed in as an after-effect of leprosy. It would be useful to explain the hazards involved in such a venture for reasons which do not pertain to medicine but, rather, to particularly trying socio-political circumstances. The best surgical expertise was thrown out for political reasons. Insecurity and economic hardships practically halted movement and, consequently, the wider application of such expertise. During a mission in 1994, there was a partial resumption of activities. The surgical team was reinstalled and made operational. It had been possible to state that multidrug therapy (MDT) had always ensured that the disabled leprosy patients, living in groups, and treated before 1990 under regular supervision, did not experience serious relapses. That fact corroborates earlier information relating particularly to surgical decompression. Although most of them were able to resume a certain measure of professional activity, social factors must still be borne in mind and the concept of partial permanent disability must be applied.

Gopouva, os hansenianos no mundo dos saos / ?

A hanseníase permanece como uma sério problema de saúde pública para os paises sub-desenvolvidos ou em fase de desenvolvimento. E por que? Por duas razoes. Primeiro porque a hanseníase acaba de entrar para o rol das doenças naturais nas quais as dimensoes econômicas e culturas desempenham importante papel. E em segundo lugar porque nos paises sub-desenvolvidos e em desenvolvimento tais dimensoes predominam como fundamentos da vida social e alimentar atitudes e comportamentos que obstaculizam qualquer programa de educaçao sanitária e de controle da endemia. As atitudes e os comportamentos aparecem hoje na literatura especializada sob a rubrica de barreiras psico-sociais entendidas como medo da doença, afastamento e discriminaçao em relaçao ao doente. A hanseníase nao é uma doença de pobres, pois atinge todos os grupos econômicos e culturais, mais é uma doença de paises pobres. Estuda-la e compreender as barreiras psico-sociais que a envolvem é uma forma de apontar as injustiças de regimes e sistemas econômicos e culturais que sustentam e alimentam as doenças em suas dimensoes sociais. O presente trabalho poe em evidência essa realidade

Relatorio das atividades da unidade de dermatologia sanitaria e saúde publica do Hospital Escola S Camilo e S. Luis em 1980 / Report of the activities of the unit of sanitary dermatology and public health of the hospital school Sant Camilo and Sant Luiz in 1980

Continuando as atividades ja iniciadas nos anos anteriores a Unidade de Dermatologia Sanitaria do Hospital Escola S Camilo e S Luis de Macapa (TFA) financidada com verba especial da OXFAM e em convenio com a Secretaria de Saúde e Ação Social do territorio, desenvolveu seu trabalho nos varios setores de saúde publica visando a possibilidade de descoberta de casos novos de hanseniase, controle dos doentes e seus contatos, recuperação e prevenção de incapacidades fisicas provocdas pela doença tendo realizado vacinações educações , educação sanitaria. Com essa finalidade vem realizando cursos de reciclagem para Agentes de Saúde e Parteira leiga trabalho da sapataria especializada. O diagnostico precoce da hanseniase tem sido realmente util, com a participação muitas vezes expontaneas das comunidades assistidas. Para desenvolver a assistencia e prevenção em hanseniase a Unidade de Dermatologia Sanitaria integrada em nosso Hospital ao Setor de Saúde Publica, realizou no decorrer do ano, varios serviços proveitosos.