Percepção do estigma e repercussões sociais em indivíduos com hanseníase / Perception of stigma and social impacts on individuals with Hansen's disease / Percepción del estigma y efectos sociales en personas con enfermedad de Hansen

Os portadores de hanseníase vivenciam situações de preconceito que, com o estigma e a discriminação, culminam para o isolamento social e a restrição dos relacionamentos sociais. Este estudo teve o objetivo de avaliar a percepção do estigma nos indivíduos com hanseníase e suas repercussões sociais. Caracterizou-se por um estudo qualitativo mediante aplicação de entrevistas semiestruturadas em 20 usuários cadastrados para tratamento poliquimioterápico nas unidades de referência na Zona da Mata Mineira, no primeiro semestre de 2014. A análise foi realizada por meio da análise de conteúdo e foram definidas as seguintes categorias de análise: Desconhecimento sobre a doença; Diagnóstico e cura; Discriminação e medo; Encobrimento da doença; Apoio social; e Vínculo e participação social. O desconhecimento sobre a doença interfere no enfrentamento por parte dos indivíduos e, aliado ao receio da discriminação, foi suficiente para que eles ocultassem seu diagnóstico para os outros. Dessa forma, não foi possível perceber nenhuma alteração em seu vínculo social. Destacaram-se as diversas reações emocionais no momento do diagnóstico além da ênfase dada à cura pelos entrevistados. Neste trabalho, ficou evidente que o encobrimento da doença e o suporte social atuaram como fatores de proteção que impediram momentos de discriminação e restrição de participação social.

The individuals with Hansen's disease experience situations of prejudice that, together with stigma and discrimination, culminate in social isolation and restrictions in social relationships. This study aimed to evaluate the perception of stigma in individuals with Hansen's disease and its social repercussions. It was configured as a qualitative study, by means of semi-structured interviews with 20 users registered to chemotherapy treatment in reference units of Zona da Mata Mineira, in the first half of 2014. The analysis was performed through content analysis and the following categories were defined: Lack of knowledge about the disease; Diagnosis and cure; Discrimination and fear; Concealment of the disease; Social support; and Bond and social participation. Lack of knowledge about the disease interferes with the individual's ability to cope with it, and coupled with fear of discrimination, it was enough for them to conceal their diagnosis from others. Thus, it was not possible to notice any changes in their social bonds. The different emotional reactions at the moment of diagnosis stood out, in addition to the emphasis on healing given by respondents. In this study, it became clear that the concealment of the disease and the social support acted as protective factors that prevented moments of discrimination and restriction in social participation.

Las personas con enfermedad de Hansen viven situaciones de prejuicio que, junto con el estigma y la discriminación, culminó con el aislamiento social y la restricción de las relaciones sociales. Este estudio tuvo como objetivo evaluar la percepción de estigma en personas con enfermedad de Hansen y sus repercusiones sociales. Caracterizado por un estudio cualitativo mediante la aplicación de entrevistas semiestructuradas con 20 usuarios registrados a tratamiento de quimioterapia en las unidades de referencia en la Zona da Mata Mineira, en el primer semestre de 2014. Se realizó el análisis mediante el análisis de contenido y las siguientes categorías del análisis se definieron: La ignorancia sobre la enfermedad; El diagnóstico y la cura; La discriminación y el miedo; El ocultamiento de la enfermedad; El apoyo social; y Enlace y la participación social. La ignorancia sobre la enfermedad interfiere con afrontamiento de los individuos y, junto con el temor a la discriminación fuera suficiente para ellos para ocultar su diagnóstico a los demás. Por lo tanto, no fue posible notar cualquier cambio en su enlace social. Destacado las diferentes reacciones emocionales al momento del diagnóstico, además del énfasis en la curación por los encuestados. En este estudio, se hizo evidente que el ocultamiento de la enfermedad y el apoyo social actuó como factores de protección que impedían momentos de la discriminación y la restricción de la participación social.

The stigma and prejudice of leprosy: influence on the human condition.

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.

The stigma and prejudice of leprosy: influence on the human condition

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. .

Portador de hanseníase: impacto psicológico do diagnóstico / Portador de lepra: impacto psicológico del diagnóstico / Hansen's disease patients: psychological impact of the diagnosis

A hanseníase, na atualidade, ainda representa um problema de saúde pública que pode causar no indivíduo consequências psicossociais. Objetiva-se, neste trabalho, identificar os impactos psicológicos provocados no paciente após o diagnóstico da hanseníase. Os sujeitos envolvidos constituem-se por cinco indivíduos em tratamento no CREDEN-PES de Governador Valadares-MG, com faixa etária entre 36 e 70 anos. Realizaram-se entrevistas não estruturadas e gravadas. Os dados foram analisados segundo Análise de Conteúdo de Bardin e categorizados em: acolhimento; informação sobre a doença; reação ao diagnóstico e cotidiano do hanseniano. Percebeu-se que as reações após o diagnóstico foram amenizadas pelo acolhimento e informação dos profissionais de saúde, e isso afeta diretamente o cotidiano do paciente. Portanto, concluiu-se que o diagnóstico da hanseníase causa no indivíduo impactos psicológicos, por se tornar um obstáculo físico, social e pessoal.

La lepra sigue siendo un problema de salud pública que puede causar consecuencias psicosociales individuales. En este trabajo, se buscó la identificación de los impactos psicológicos en los pacientes después del diagnóstico de la lepra. Los sujetos involucrados están formados por cinco personas en tratamiento en CREDEN-PES de Governador Valadares, Minas Gerais, con edades comprendidas entre 36 y 70 años. No hubo entrevistas estructuradas grabadas. Los datos fueron analizados mediante el análisis de contenido de Bardin y se clasifican en: recepción; información acerca de la enfermedad; reacción para el diagnóstico y rutina de la lepra. Se observó que las reacciones después del diagnóstico fueron mitigados por el anfitrión y la información para los profesionales de la salud, y esto afecta directamente a la vida cotidiana del paciente. Se concluyó que el diagnóstico de la lepra provoca efectos psicológicos en el individuo, para convertirse en obstáculos físicos, sociales y personales.

Hansen's disease is still a public health problem that can cause social and psychological consequences for individuals. The aim of this work is to identify the psychological impacts provoked in the patient after the diagnosis of the Hansen's disease. The subjects involved are constituted by five individuals in treatment in CREDEN-PES Governador Valadares, Minas Gerais state, in the age group of 36-70 years. Unstructured interviews were accomplished and they were recorded. The data were analyzed according to Bardin's Analysis of Content and categorized into: reception, information about the disease, reaction to the diagnosis and routine of hansen's disease. It was noticed that the reactions after the diagnosis were softened for the health professionals' reception and information, and this affects directly the daily living of the patient. Thus, it was concluded that Hansen's disease diagnosis causes psychological impacts in the individual, for it turning itself a physical, social and personal obstacle.

Disease-avoidance processes and stigmatization: cues of substandard health arouse heightened discomfort with physical contact.

An evolutionary approach to stigmatization suggests that disease-avoidance processes contribute to some instances of social exclusion. Disease-avoidance processes are over-inclusive, targeting even non-threatening individuals who display cues of substandard health. We investigated whether such cues motivate avoidance of physical contact in particular. In Studies 1 and 2, targets with disease (e.g., leprosy) or atypical morphologies (e.g., amputated leg, obesity) were found to arouse differentially heightened discomfort with physical (versus nonphysical) contact, whereas a criminal target (stigmatized for disease-irrelevant reasons) was found to arouse elevated discomfort for both types of contact. Study 3 used a between-subjects design that eliminated the influence of extraneous factors. A diseased target was found to arouse differentially heightened discomfort with physical (versus nonphysical) contact, and to do so more strongly than any other type of target.

O estigma da hanseníase: relato de uma experiência em grupo com pessoas portadoras / The hansen disease's stigma: an account of a group experience with hansen's disease patients

Este artigo é o relato de uma experiência em grupo com indivíduos portadores de hanseníase que tem por objetivo aprofundar as questões relativas ao ser humano, que apresenta esta doença. A hanseníase é uma enfermidade milenar que traz consigo a marcado preconceito, discriminação e exclusão social desde o seu surgimento. Durante um longo tempo os indivíduos foram rejeitados pela sociedade, família e amigos e condenados a viver em total situação de privação perdendo o contato com o mundo externo para evitara contaminação. O estigma se faz presente desde os tempos bíblicos e continua fazendo parte do imaginário das pessoas ainda nos dias atuais. Embora, atualmente a hanseníase tenha tratamento e cura, o estigma e o preconceito permanecem enraizados em nossa cultura e dificultam o indivíduo no enfrentamento da doença, trazendo-lhes sérias repercussões em sua vida pessoal e profissional. Os relatos dos sentimentos e vivências apresentados pelos participantes no grupo evidenciam as dificuldades enfrentadas pelos mesmos, desde a busca do diagnóstico, a conscientização do mesmo, a realização do tratamento e após a cura, uma vez que sua trajetória continua para tratar as incapacidades físicas. A hanseníase deixa marcas profundas nos seres humanos devido às inúmeras perdas decorrentes da doença. Os indivíduos necessitam resgatar sua auto-estima, seus vínculos e relacionar-se para reintegrar-se ao mundo real. Os sentimentos relacionados a esta doença como o medo, a vergonha, a culpa, a exclusão social, a rejeição e a raiva fazem parte do seu cotidiano

This article is an account of Hansen’s disease patients in a group experience with the aim of examining thoroughly the issues related to the human that has this pathology. The millennial Hansen’s disease brings prejudice, discrimination and social exclusion since its emergency. For a long time these individuals were rejected by the society, family and friends and condemned to live in hardship, losing contact with the outside world to avoid contamination. The stigma set in the biblical times and nowadays it is still part of people’s fantasies. Although today the Hansen’s disease has a treatment and cure, the stigma and prejudice are still rooted in our culture, hampering the individual to face the disease and leaving serious consequences in their personal and professional life. The reports of the feelings and life experiences presented by the participants in the group show the difficulties faced by these individuals beginning with the search for the diagnosis, its awareness, the treatment accomplishment and after the cure, the treatment of the physical incapacities. The Hansen’s disease leave deep scars in the human beings due to the countless damages resulted from the disease. The individuals need to recover their self-esteem, their bonds and connect to reintegrate themselves into the real world. The feelings related to this pathology as fear, shame, guilt, social exclusion, rejection and rage are partof their daily life.