Direitos e garantias da pessoa atingida pela Hanseníase
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Data
2017-02-21
Autores
Teixeira, Rafael Monteiro [UNESP]
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Universidade Estadual Paulista (Unesp)
Resumo
A hanseníase é uma doença crônica infecciosa, de evolução lenta, que se manifesta sobretudo mediante sinais e sintomas dermatológicos, tais como lesões na pele e nervos, especialmente nos olhos, mãos e pés cujo agente etiológico é o Mycobacterium leprae. A doença é considerada um grande problema de saúde pública, devido a sua magnitude e alto poder incapacitante. O reconhecimento precoce e o tratamento oportuno são elementos chave para cessar a transmissão prevenindo incapacidades. A assistência integral à pessoa com hanseníase requer a organização de equipes multidisciplinares da rede pública de serviços do Sistema Único de Saúde (SUS), da atenção básica à média e alta complexidade, de acordo com a necessidade de cada caso e com os princípios de equidade e integralidade. Diante desse cenário, compete ao Estado nos termos do artigo 1°, III e do artigo 5° da Constituição Federal de 1988 disponibilizar ferramentas para que o cidadão tenha condições de subsistir com dignidade, assegurando meios de efetivação dos seus direitos. Diante do exposto, este estudo tem por objetivo descrever os direitos da pessoa atingida pela hanseníase com vistas a oferecer aos profissionais da saúde ferramentas para que estes possam informar e orientar a existência e o acesso a esses direitos. É um estudo quantitativo, que foi realizado no ambulatório de referência de hanseníase do Hospital das Clínicas - UNESP em Botucatu/SP e também nas unidades de saúde das cidades que compõem o Polo Cuesta.Participaram do estudo profissionais da área da saúde que trabalham no ambulatório de hanseníase e profissionais que trabalham nas unidades de saúde das cidades que integram o pólo cuesta diretamente ligados ao atendimento das pessoas atingidas pela hanseníase que aceitaram a participar do estudo assinando o termo de Consentimento livre e Esclarecido. Também participaram das pesquisas pessoas atingidas pela hanseníase maiores de 18 anos que aceitaram a participar do estudo assinando o termo de Consentimento livre e Esclarecido. Os dados foram coletados mediante questionário realizado e aplicado pelo pesquisador. A amostra foi composta por 31 pessoas atingidas pela hanseníase e 26 profissionais da saúde diretamente ligados ao atendimento dessas pessoas. Quanto a categorização das pessoas atingidas verificou-se o predomínio de pessoas do sexo masculino, quanto a idade a amostra demonstra que as pessoas atingidas pela hanseníase estão em idade economicamente ativa. De acordo com o estado civil mostra o predomínio de pessoas casadas ou vivendo em união estável. Quanto ao perfil demográfico dos profissionais de saúde nas unidades estudadas observou-se uma prevalência de mulheres, com idade mediana de 34 anos, são profissionais médicos e enfermeiros em sua maioria. Com relação ao conhecimento da pessoa atingida pela hanseníase sobre os direitos decorrentes da doença o estudo revela o prevalente desconhecimento acerca dos direitos que o portador de hanseníase possui e observa-se que, frequentemente, os pacientes não são orientados quanto aos seus direitos.Com relação ao conhecimento dos profissionais diretamente ligados ao atendimento da pessoa atingida pela hanseníase acerca dos direitos legais desse paciente, verifica-se pela análise dos dados que a prevalência é de profissionais que, quando questionados de forma geral, não conhecem os direitos da pessoa atingida pela hanseníase e mesmo os que conhecem não orientam seus pacientes a exercitar esses direitos. Já quando os questionamentos foram pontuais acerca de direitos específicos os profissionais demonstram maior conhecimento, no entanto o percentual de profissionais que orientam é relativamente baixo. Os direitos questionados foram tratamento gratuito, ao ter suas informações mantidas em sigilo, reabilitação em todos os níveis terapêuticos, recebimento gratuito de órtese e prótese, pleitear de forma administrativa ou judicial, quando necessário, auxílio doença, aposentadoria por invalidez e benefício assistencial. O que se verifica na literatura é a descrição pormenorizada da doença, suas manifestações clínicas, formas de tratamento e prevenção, no entanto, é extremamente escassa com relação à descrição e divulgação dos direitos legais da pessoa atingida pela hanseníase. Do mesmo modo verificou-se a escassez de artigos relacionados ao conhecimento dos profissionais da saúde ligados ao atendimento de pessoas com hanseníase acerca dos direitos legais aplicáveis a essa situação, razão pela qual o presente estudo descreve de forma não exaustiva quais são esses direitos e os mecanismos para seu exercício.Este estudo resultou na elaboração de uma cartilha que contempla de forma simples e objetiva informações acerca da hanseníase e dos direitos e garantias assegurados à pessoa atingida, permitindo assim a disseminação desse conhecimento.
Leprosy (etiological agent Mycobacterium leprae) is a chronic infectious disease of slow growth, manifesting itself mostly through dermatological signs and symptoms, such as skin and nerve lesions particularly on the eyes, hands and feet. The disease is regarded as a major public health problem due to its magnitude and high incapacitating power. Early detection and timely treatment are key elements in stopping transmission thus preventing incapacities. Comprehensive healthcare assistance for Leprosy sufferers requires the organization of multidisciplinary teams across the national healthcare service network of Brazil (SUS), from basic to mid and highly complex care, in accordance with the necessities of each case and based on equity and integrality principles. It is therefore, the role of the State as per the terms under Article 1°, III and Article 5° of the 1988 Constitution of the Federative Republic of Brazil, to provide the citizen with tools to allow subsistence with dignity by ensuring ways in which to implement their rights. In view of the aforementioned, this study aims to describe the rights of the person affected by Leprosy, in order to offer health professionals tools to guide and inform about the existence and access to these rights. It is a quantitative study that was conducted at the Reference Centre for Leprosy at the Hospital das Clínicas (São Paulo State University – UNESP- Medical School’s Clinical Hospital) in Botucatu/SP, as well as health care units in the cities that make up the “Polo Cuesta” (Cuesta Tourist Pole, a tourism consortium non-profit association of twelve municipalities in the state of São Paulo). Taking part in the study were health professionals, all providing direct assistance to those affected by Leprosy, working on the health care units in the cities that make up the “Polo Cuesta” and those working at the Reference Centre for Leprosy, as well as people affected by Leprosy, over 18 years of age only, all of whom have agreed to participate by signing the Informed Consent Form. The data was collected through a questionnaire created and administered by the researcher. The sample was composed by 31 people affected by Leprosy and 26 health professionals directly linked to assisting these people. As for the categorization of the people affected by Leprosy, the sample shows the predominance of males, it also demonstrates that people affected by Leprosy are of an economically active age. In terms of marital status, it presents a predominance of people either married or in a stable union. As per the demographic profile of the health professionals from the studied unities, a prevalence of women with an average age of 34 years old was noted, most of them professional doctors and nurses. In relation to the knowledge of the rights derived from the disease by the person affected by Leprosy, the study reveals a prevalent unfamiliarity about their own rights and it has been observed that quite frequently, the patients are not guided in relation to their rights. In terms of the knowledge held by the professionals directly linked to those affected by Leprosy about the legal rights of said patient, it was verified by data analysis that most professionals when questioned, in general, have no knowledge of the rights a person affected by Leprosy is entitled to, and even when they are aware, they do not guide their patients to exercise their rights. On the other hand, when clearly questioned about specific rights, the professionals demonstrated wider knowledge. However, the percentage of professionals that guided their patients was relatively low. The specific rights in question were free treatment, having their information confidentially kept, rehabilitation on all therapeutic levels, receipt of orthosis and prosthesis free of charge, administrative or judicial plead, when necessary, for disability aid, retirement due to disability and benefits program. What is seen in the literature is the detailed description of the disease, its clinical manifestations, forms of treatment and prevention, however it is extremely scarce in relation to the description and disclosure of the legal rights of the person affected by Leprosy. Likewise, there was a shortage of articles relating to health professionals who assist Leprosy sufferers and their knowledge of the legal rights applicable to this situation, which is why the present study describes in a non-exhaustive way, what these rights are and the mechanisms for their exercise. This study resulted in the elaboration of a booklet that provides information in a simple and objective way, about Leprosy and the rights and guarantees assured to the affected person, thus allowing for the dissemination of this knowledge.
Leprosy (etiological agent Mycobacterium leprae) is a chronic infectious disease of slow growth, manifesting itself mostly through dermatological signs and symptoms, such as skin and nerve lesions particularly on the eyes, hands and feet. The disease is regarded as a major public health problem due to its magnitude and high incapacitating power. Early detection and timely treatment are key elements in stopping transmission thus preventing incapacities. Comprehensive healthcare assistance for Leprosy sufferers requires the organization of multidisciplinary teams across the national healthcare service network of Brazil (SUS), from basic to mid and highly complex care, in accordance with the necessities of each case and based on equity and integrality principles. It is therefore, the role of the State as per the terms under Article 1°, III and Article 5° of the 1988 Constitution of the Federative Republic of Brazil, to provide the citizen with tools to allow subsistence with dignity by ensuring ways in which to implement their rights. In view of the aforementioned, this study aims to describe the rights of the person affected by Leprosy, in order to offer health professionals tools to guide and inform about the existence and access to these rights. It is a quantitative study that was conducted at the Reference Centre for Leprosy at the Hospital das Clínicas (São Paulo State University – UNESP- Medical School’s Clinical Hospital) in Botucatu/SP, as well as health care units in the cities that make up the “Polo Cuesta” (Cuesta Tourist Pole, a tourism consortium non-profit association of twelve municipalities in the state of São Paulo). Taking part in the study were health professionals, all providing direct assistance to those affected by Leprosy, working on the health care units in the cities that make up the “Polo Cuesta” and those working at the Reference Centre for Leprosy, as well as people affected by Leprosy, over 18 years of age only, all of whom have agreed to participate by signing the Informed Consent Form. The data was collected through a questionnaire created and administered by the researcher. The sample was composed by 31 people affected by Leprosy and 26 health professionals directly linked to assisting these people. As for the categorization of the people affected by Leprosy, the sample shows the predominance of males, it also demonstrates that people affected by Leprosy are of an economically active age. In terms of marital status, it presents a predominance of people either married or in a stable union. As per the demographic profile of the health professionals from the studied unities, a prevalence of women with an average age of 34 years old was noted, most of them professional doctors and nurses. In relation to the knowledge of the rights derived from the disease by the person affected by Leprosy, the study reveals a prevalent unfamiliarity about their own rights and it has been observed that quite frequently, the patients are not guided in relation to their rights. In terms of the knowledge held by the professionals directly linked to those affected by Leprosy about the legal rights of said patient, it was verified by data analysis that most professionals when questioned, in general, have no knowledge of the rights a person affected by Leprosy is entitled to, and even when they are aware, they do not guide their patients to exercise their rights. On the other hand, when clearly questioned about specific rights, the professionals demonstrated wider knowledge. However, the percentage of professionals that guided their patients was relatively low. The specific rights in question were free treatment, having their information confidentially kept, rehabilitation on all therapeutic levels, receipt of orthosis and prosthesis free of charge, administrative or judicial plead, when necessary, for disability aid, retirement due to disability and benefits program. What is seen in the literature is the detailed description of the disease, its clinical manifestations, forms of treatment and prevention, however it is extremely scarce in relation to the description and disclosure of the legal rights of the person affected by Leprosy. Likewise, there was a shortage of articles relating to health professionals who assist Leprosy sufferers and their knowledge of the legal rights applicable to this situation, which is why the present study describes in a non-exhaustive way, what these rights are and the mechanisms for their exercise. This study resulted in the elaboration of a booklet that provides information in a simple and objective way, about Leprosy and the rights and guarantees assured to the affected person, thus allowing for the dissemination of this knowledge.
Descrição
Palavras-chave
Hanseníase, Tratamento, Diagnóstico, Direito da saúde, Direitos humanos, Leprosy, Treatment, Diagnostic, Health law, Human rights