Social Distance in COVID-19: Drawing the line between protective behavior and stigma manifestation.

Social stigma has long been defined by Ervin Goffman as an attribute that it is deeply discrediting and reduces the individual who bears it from a whole and usual person to a tarnished one, unfit to be included into the mainstream society.1 As stigma spans time and space and has been documented in other social species such as ants and chimpanzees, one might argue for its adaptive potential. Neuberg and colleagues2 have suggested that humans generate stigmas against threats to effective group functioning, with a notable case being infectious diseases. A similar explanation has been put forward by other researchers who consider stigma to have evolved from disease-avoidance mechanisms.3 Hence, it is not surprising that tuberculosis, HIV and leprosy have been surrounded by stigma and discrimination.4,5 More recently, people who had survived the 2013-2016 Ebola outbreak tackled social exclusion and unemployment after returning to their neighborhoods.6 Nowadays, the global community faces an unprecedented challenge of grappling with the COVID-19 pandemic. From the very outset, social distance measures were introduced in order to contain the spread of the virus, ranging from maintaining 1.5 meters physical distance to strict lockdowns. However, this may easily escalate into stigmatizing and discriminatory behaviours (desired social distance is a proxy of discrimination) against people who have suffered from COVID-19, their relatives and their caregivers, with the United Nations stating that "fear, rumours and stigma" are the key challenges surrounding COVID-19.7 Apart from the psychological distress experienced by the stigmatized individuals, due to anticipated stigma people might start concealing their illness, avoid or delay seeking medical advice or testing until they are seriously ill and be reluctant to collaborate with authorities on tracing contacts. Therefore, timely identifying stigma and addressing it is an integral part of an effective health response to the ongoing pandemic. In spite of its importance, research on COVID-19 related stigma is scarce. From the perspective of the stigmatized individuals, a study in China8 demonstrated that COVID-19 survivors faced heightened levels of overall stigma, social rejection, financial insecurity, internalized shame and social isolation, compared to healthy controls. From the perspective of the general population, a study in US9 substantiated low levels of anticipated stigma and stereotype endorsement; however, respondents who anticipated greater stigma were less likely to seek a COVID-19 test. It is therefore clear that the international literature is still on its infancy with respect to COVID-19 related stigma. In this context, in the First Department of Psychiatry, University of Athens, we conducted a survey on public attitudes to COVID-19 and to mental disorders. The study would inform the design and implementation of anti-stigma initiatives, funded by the Regional Governor of Attica. As physical distancing and social distancing are interwoven, with some researchers and practitioners using the terms interchangeably, and social distancing is also a protective public health measure against COVID-19, we enquired about attitudes and desired social distance from people who had recovered from COVID-19. Nonetheless, it merits noting that evidence from other diseases indicates that stigma may persist even after recovery.10 Moreover, rather than describing public attitudes overall, we were more interested in investigating where COVID-19 related stigma stands as compared to the most stigmatizing health condition to date, i.e., severe mental illness.11 Interestingly enough, which elements of severe mental illness render it the most stigmatized as compared to other conditions is still speculative: is it the fear of madness? the severity and the type of symptoms? the purported incurability or its chronicity? In our study, evidence from a convenience sample of 370 residents of Attica indicates that the general population holds more negative attitudes towards people who have recovered from COVID-19 than towards people with mental disorders. Nonetheless, respondents reported lower levels of desired social distance from recovered COVID-19 cases as compared to mental illness cases in social interactions of graded intimacy; however, the difference between the two groups was found to decrease as the level of intimacy decreased as well. In other words, desired social distance from COVID-19 cases is more easily discernible in transient social encounters, like talking to a stranger. It is therefore clear that social distance is still a public health protective measure rather than a stigma manifestation. For social encounters of greater intimacy, usually a sign of discriminatory behaviours, having recovered from COVID-19 is not a deterrent to interaction. Findings can be explained by the acute (non-chronic) nature of the disease, both in terms of symptoms as well as the 10-day period since symptom onset for being contagious. Nonetheless, with emerging evidence substantiating the notion of long COVID-19, defined as the persistence of symptoms for 3 weeks after infection,12 this might quickly change. Moreover, with many public health protective measures available, such as the use of mask, diagnostic testing and vaccination, people who become infected are more likely to be blamed for contracting the disease and thus deemed responsible for this, in line with the Attribution Theory.13 Specifically, overarching evidence from stigma research in many diseases/conditions indicates that when an illness or a social condition, such as economic disadvantage, is attributed to internal causes, as compared to external, lay people are more likely to hold stigmatizing attitudes.14-16 Therefore, as attitudes towards COVID-19 are worse compared to those towards people with mental illness, if tailored anti-stigma action is not undertaken, it is only a matter of time for prejudices to evolve into discriminatory behaviours, with devastating consequences on both the individuals and the course of the pandemic. Concomitantly, as severe mental illness is neither life threatening nor contagious, but COVID-19 is, it is interesting to explore how stigma is related to evolutionary mechanisms favouring adaptability and survival as well as which elements are the drivers of stigma development and establishment. Therefore, comparing and contrasting the stigma surrounding these conditions may shed light on the underpinnings of social stigma and facilitate effective interventions to reduce it and eventually eliminate it.

Mulheres com hanseníase: interferências nos modos de viver / Women with leprosy: interferences in the ways of living

A hanseníase é uma doença milenar que carrega em seus acometidos, em especial nas mulheres, impactos importantes em seu cotidiano, em sua imagem e posição social. Os padrões de gênero socialmente impostos às mulheres vêm acompanhados de preconceitos que tomam novas proporções com a hanseníase, sendo causa de isolamento social, tristeza e depressão, trazendo reformulações nos modos de vida. O questionamento que norteia este trabalho é: Quais as interferências da hanseníase nos modos de viver de mulheres?. O objetivo foi analisar a interferência produzida pela hanseníase nos modos de viver de mulheres. Estudo de abordagem qualitativa, com quadro teórico metodológico com aproximações cartográficas e alguns conceitos da esquizoanálise, proposto por Gilles Deleuze e Félix Guattari. A produção de dados ocorreu por meio de entrevistas individuais e registros no diário de bordo da pesquisadora. Participaram do estudo nove mulheres, com idades entre 30 e 62 anos que no momento da pesquisa estavam em acompanhamento no serviço de saúde para tratamento de hanseníase. Os dados, em sua apresentação, foram baseados nas ideias relativas a diferença e repetição propostas pelos autores supracitados do referencial. Os resultados foram divididos em cinco eixos: 1. Hanseníase e Aparência das Mulheres: Encruzilhada entre a Pele, a Forma e o Feminino; acompanhamos inquietações referentes ao corpo feminino, o corpo alterado pela hanseníase e os efeitos sobre a aparência, que nos mostra que a relação com o corpo é uma construção social de um certo modo de ser mulher, de se apresentar ao outro e de se identificar tal como se espera. 2. Ganhar a Vida: um imperativo entre a Casa e o Trabalho; as participantes trouxeram angústias e preocupações com a remuneração para manutenção da vida. Foi observado também as situações de trabalho formal e informal. 3. Relações Familiares e as Mulheres com Hanseníase; são momentos que elas demonstram suas relações com filhos e marido, e como se dão as relações de poder dentro contexto doméstico. 4. Violência do Estado nas Práticas Profissionais; vimos situações em que o Estado é representado através de práticas profissionais, prejudicando direitos das mulheres. As mulheres relataram a perda de seus empregos, em função da doença, e a busca por auxílio. E por último, 5. Isolamento, Medo, Sofrimento, Fé: Enfrentamento da Hanseníase? as mulheres apresentaram algumas práticas que colocam para reflexão como elas têm enfrentado a hanseníase e a figura feminina isolada em seu próprio lar. Talvez a nossa pretensão fosse encontrar superação, força, potência nessas mulheres frente ao adoecimento. Mas mais que isso, com o referencial metodológico adotado pudemos mapear os encontros e afetos que evidenciaram dores e afetos tristes. A potência para agir se dá nos afetos, incluindo os tristes, não haveria força e potência sem o que as fizessem impulsionar. Apesar disso tudo, a vida dessas mulheres têm passado por reformulações e elas mesmas têm se reinventado a cada dia. Novas formas de viver foram criadas, seja amparada na fé, na família, na cura da hanseníase como marco para novos devires, e até mesmo a busca de força no devir-mulher

Leprosy is an age-old disease that has an important impact on its patients, especially on women, in their daily lives, in their appearance and social position. Gender standards socially imposed on women are accompanied by prejudices that take on new proportions with leprosy, causing social isolation, sadness and depression, imposing changes in the way of life. The objective and question that guides this work is: What are the interferences of leprosy in women's way of life? Thus, a qualitative approach study was made applying cartographic procedure and some concepts of schizoanalysis, proposed by Gilles Deleuze and Félix Guattari. Data production occurred through individual interviews and records in the researcher's logbook. Nine women participated in the study, aged between 30 and 62 years old who, at the time of the research, were being followed up at the health service for the treatment of leprosy. The data, in their presentation, were based on the ideas related to the difference and repetition proposed by the authors mentioned above. The results were divided into five axes: 1. Leprosy and the Appearance of Women: Crossroads between the Skin, the Form and the Feminine; we follow the concerns about the female body, its changes and effects because of the disease. Thus, it became evident that a woman's relationship with her body is a social construction, influencing the ways of presenting to others and comply with social expectations. 2. Earn a living: an imperative between Home and Work; the participants brought anguish and concerns about remuneration for life maintenance. Formal and informal work situations were also observed. 3. Family Relations and Women with Leprosy; moments when they demonstrate affection with their children and husband, and how power relationships take place within the domestic context. 4. State violence in professional practices; we saw situations in which the State is represented through professional practices, undermining women's rights. Women reported losing their jobs due to the disease and seeking help. Finally, 5. Isolation, Fear, Suffering, Faith: Facing Leprosy? Women presented some practices that pose for reflection how they have faced leprosy and the isolated female figure in their own home. Perhaps our intention was to find resilience, strength, power in these women in the face of illness. But more than that, with the methodological framework adopted we were able to map the factors and affections that showed pain and sadness. The power to act occurs in the affections, including the sad ones, there would be no strength and potency without what made them push. Despite all this, the lives of these women have been undergoing reformulation and they have reinvented themselves every day. New ways of living were created, whether supported by faith, family, the cure of leprosy as a framework for new "devires", and even the search for strength in "devir"-woman

Mal de Meleda: A great imitator.

Mal de Meleda is an hereditary palmoplantar keratoderma named for the Mljet Island in Croatia. The lives of those affected by this disease represent a complex situation that encompasses members of a vulnerable group. They require enlightenment and should be approached with awareness, taking into account their overall psychophysical status and the environment of each patient. Those afflicted with Mal de Meleda not only have to deal with a difficult life due to their affliction, but they also must cope with the hardships of socialization while trying to realize a normal life within their island community. This is compounded by the frequent interviews and examinations of researchers interested in the various aspects of their illness. The subject of this contribution is not about the nature of this disease, rather about the traces it has left on the (sub)consciousness of the population. It is also concerned with exploring ways of how to access patients and understanding the depth of their vulnerability. We present some thoughts tied to the interpersonal experiences of researchers and patients afflicted with Mal de Meleda.

Representações do estigma da hanseníase nas mulheres do Vale do Jequitinhonha-MG / Representations of leprosy's stigma in the women of the Jequitinhonha Valley-MG

Resumo O artigo analisa as percepções do estigma da hanseníase pelas mulheres que vivem no Vale do Jequitinhonha, em Minas Gerais. A produção está associada às marcas individuais e à interpretação social destas, sob a forma de rótulos que identifiquem o doente. Tal marca subentende a própria visão do indivíduo acometido que, no caso estudado, está relacionada à exclusão social, à pobreza e à religiosidade. Para compreender o estigma em meio à estruturação de serviços de saúde e trabalhos de informação das equipes de saúde, foram realizadas entrevistas com mulheres, sendo todas portadoras ou ex-portadoras da doença. As dificuldades de relacionamento com os serviços, com o próprio corpo, com a família, assim como a relação da doença com aspectos místicos e religiosos, são categorias analíticas que emergiram da pesquisa. O estigma manifesto em situações isoladas, e sob a decisão do indivíduo.

Abstract This article analyzes the perceptions of the stigma of leprosy by women living in the Jequitinhonha Valley, Minas Gerais. This production is associated with the individual's marks and their social interpretation, in the form of labels which identify the patient. Such marks imply the own vision of the affected person who, in the case studied, is related to social exclusion, poverty and religiosity. To understand this stigma among the structuring of health services and information work of the health teams, interviews were conducted with women, all of whom were carriers or former carriers of the disease. The difficulties of relationship with services, their own bodies, with their families, as well as the relationship of the disease with mystical and religious aspects are analytical categories that emerged from this research. The stigma manifested in isolated situations, and under the individual's decision.

A lesão social da hanseníase em mulheres curadas / The social lesion of leprosy in cured women

Introdução: O Brasil é o segundo país no mundo em número de casos novos de hanseníase, doença infecciosa, com alto poder incapacitante e historicamente ligada preconceito, estigma e castigo e à exclusão social pela política sanitária de contenção da doença até meados do século passado. Avanços tecnológicos e mudanças na política de controle da doença conduziram a possibilidade de tratamento ambulatorial, alta por cura e experiências de participação em grupos de apoio, entretanto, questiona-se como pacientes que receberam alta por cura percebem, o processo de adoecimento, atribuem significado à cura e vivenciam marcas do estigma e do preconceito relacionado à doença. Objetivos: Identificar relações que mulheres que tiveram hanseníase estabelecem entre essa enfermidade e suas implicações para a vida cotidiana de cada uma; identificar significados atribuídos, por mulheres que tiveram hanseníase, ao processo de adoecimento; identificar tipos de relações das mulheres com a participação em um grupo de apoio; desvelar sentidos atribuídos pelas mulheres à experiência da cura da hanseníase e às consequentes lesões sociais. Metodologia: Foram realizadas entrevistas com quinze mulheres, ex-pacientes e membros do Grupo de Apoio a Mulheres Atingidas pela Hanseníase- GAMAH que desenvolve atividades educativas de autocuidados, profissionalização e geração de renda. Resultados: Os relatos das mulheres estão relacionados à hanseníase no cotidiano, com as narrativas sobre a complexidade do diagnóstico, apresentando a dor como marca mais significativa. Outra categoria resgata o retardo no diagnóstico e se explica por ser dado por profissionais não especialistas, pelo desconhecimento dos sintomas da doença pelas mulheres, ou ainda pela negação de estar doente. O apoio social encontrado no GAMAH configura outro agrupamento de ideias, mostrando o apoio na forma de assistencialismo, a forma que conheceu o GAMAH, e o mesmo como espaço de compartilhamento de vivências. Outro grupo de respostas se refere às sequelas permanentes, como complicações depois da hanseníase, sobre o tratamento e o cotidiano, e também sobre os cuidados com o corpo. E o ultimo agrupamento de respostas, refere-se aos processos de alta e os significados da cura da hanseníase, a crença na cura em contraponto com a descrença na cura, com uso de alguns indicadores para justificar as respostas, e ainda relatos de estigmas e preconceitos como representação da lesão social. Considerações Finais Diante do significado da vivência das mulheres com a hanseníase e dos desafios das mesmas na vida cotidiana para superar o que se chamou de lesões sociais, desvelou-se a questão que parece relacionada não somente a insuficiente implementação de políticas públicas, mas igualmente a problemas de acolhimento para a multiplicidade de cuidados que a hanseníase exige em termos clínicos e sociais, com ações que vão além da perspectiva de contenção da doença

Brazil is the second country in the world in terms of number of new cases of leprosy, an infectious disease, with high incapacitating power and historically linked to prejudice, stigma and punishment, and to social exclusion by the health politics to contain the disease until the middle of the last century. Technological advances and changes in the control politics of the disease have led to the possibility of outpatient treatment, high cure and experiences of participation in support groups, however, it is questioned how patients who were discharged by cure perceive, the process of illness, give meaning To cure and experience marks of stigma and prejudice related to the disease. To identify relationships that women who had leprosy establish between this disease and its implications for the daily life of each one; To identify meanings attributed, by women who had leprosy, to the process of illness; Identify types of women's relationships with participation in a support group; Reveal the senses attributed by women to the experience of the cure of leprosy and the consequent social injuries. Interviews were conducted with fifteen women, former patients and members of the Support Group for Women Affected by Leprosy - GAMAH - who develop educational activities of self-care, professionalization and income generation. The reports of women are related to leprosy in daily life, with narratives about the complexity of the diagnosis, presenting pain as the most significant brand Another category rescues the delay in diagnosis and is explained by being given by non-specialists, by the lack of knowledge of the symptoms of the disease by women, or by the denial of being sick. The social support found in GAMAH sets up another grouping of ideas, showing the support in the form of assistance, the form that knew the GAMAH, and the same as space of sharing of experiences. Another group of responses portrays permanent sequelae, such as complications after leprosy, treatment and daily life, and body care. And the last grouping of responses refers to discharge processes and the meanings of the cure of leprosy, belief in cure versus disbelief in cure, use of some indicators to justify responses, and reports of stigma and Prejudices as a representation of the social injury. In view of the significance of women living with leprosy and their daily challenges in overcoming what has been called social injury, the issue that seems to be related not only to the insufficient implementation of public policies, but also to the Problems of reception for the multiplicity of care that leprosy requires in clinical and social terms, with actions that go beyond the perspective of containment of the disease

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 Use of Assistive Technology to Promote Care of the Self and Social Inclusion in Patients with Sequels of Leprosy.

BACKGROUND: This study is about the contribution of occupational therapy inside a rehabilitation group, and we focus on the autonomy of patients with disabilities due to leprosy. There are few studies on the use of assistive technology by leprosy patients; to our knowledge, none of them aim to have a subjective approach of care. Our purpose was to analyze the repercussions of assistive technology on autonomy of care of the self in patients with sequels of leprosy. METHODS: A qualitative, descriptive exploratory study with a semi-structured interview and a field observation as a research method was conducted between November 2014 and February 2015 at a University Hospital in Rio de Janeiro. FINDINGS: Eight patients from the service of Occupational Therapy were interviewed, and 44 hours of observation were performed. Interviews followed a semi-structured script and a field journal was used to take notes. Analysis was conducted by the hermeneutic approach. Costs were obtained after a global cost analysis of the fixed and variable expenses and direct and indirect costs to the manufactured products with an amount of 100 dollars. Results were grouped according to the following categories: contribution of the adapted devices for the care of the self and feelings and sensations provoked by the use of self-help devices. The reports revealed feelings, perceptions and meaningful contents about the social, familiar and individual dimensions, also the stigma coupled with leprosy. However, forms of re-signification were elaborated. CONCLUSIONS: Assistive technology empowers the subject to perform care of the self and promotes social inclusion.

The Exile of Hansen's Disease Patients to Moloka'i: A Diffusion of Innovations Perspective.

This article analyzes the exile of patients with Hansen's disease (leprosy) to Moloka'i (Hawaii) by applying the diffusion of innovations (DoI) theory. Developed by Rogers, DoI posits that an innovation (i.e., idea, movement, or trend) is initiated within a culture. Then, it is diffused via particular channels across diverse cultures. Instead of evolving independently, innovations diffuse from one culture to another through various forms of contact and communication. In the context of this analysis, the objective is to examine how the diffusion of certain ideas, namely, abolishing the stigma associated with leprosy, could have improved the lives of Hawaiians. An important premise of this article is that the Hawaiian government barely applied the tenets of DoI, which is the reason why many people lost their lives. So, this article seeks to explore what could have been done to improve their situation and what pitfalls should be avoided in the future.

Perception of social exclusion, neuropathy, and quality of life among Hansen's disease patients.

BACKGROUND: Leprosy subjects are strongly affected not only by physical issues such as peripheral neuropathy but also by massive social exclusion that may be related to quality of life (QoL) impairment. However, there are as yet no studies evaluating the impact of perceived stigma in conjunction with neuropathy on QoL and the respective role of each one on QoL. OBJECTIVE: The present study aims to investigate the variations in clinical and socio-demographic profile of Hansen's disease patients with/without perception of social exclusion (PSE) and neuropathy as the impact of both conditions on their QoL. METHODS: A sample of 160 consecutive leprosy outpatients seeking treatment in two reference centers for leprosy in Brazil was recruited. Patients were assessed using a socio-demographic questionnaire, M.I.N.I. PLUS and SF-36. Data from medical records were also collected. Participants were divided into four groups: control group, perceived stigma, neuropathy, and stigma neuropathy. RESULTS: Of the 160 patients who consented to participate, 78.75% completed the survey. All four groups were similar in terms of demographic parameters, except for occupational status, which was compensated statistically. The group with neuropathy and PSE reported the worst QoL in half of the evaluated domains. The cross-sectional design does not allow cause and effect to be established between variables, and the relatively small sample size may limit the ability to demonstrate a relative decrease in QoL scores from the isolated variables analyzed. CONCLUSIONS: The results of this survey show that the presence of both neuropathy and PSE significantly increases impairment in QoL, especially in some specific domains.

"Como ferrugem em lata velha": o discurso do estigma de pacientes institucionalizados em decorrência da hanseníase / "Like rust on an old tin can": the discourses of stigma of institutionalized patients with leprosy

Este estudo analisa os discursos de pacientes institucionalizados em função da hanseníase, focalizando o estigma e seu enfrentamento para inclusão social. Trata-se de estudo qualitativo, desenvolvido na Casa de Saúde Santa Fé, em Minas Gerais, Brasil. Participaram dez pacientes que responderam a uma entrevista no período de março a outubro de 2011. A história oral foi a metodologia adotada e utilizou-se a técnica da análise de discurso na avaliação das entrevistas, partindo-se do referencial psicossocial. Constatou-se, nos depoimentos, a força do estigma, bem como seu caráter, aparentemente permanente, no imaginário coletivo acerca da hanseníase. Percebe-se que o estigma ainda representa forte entrave no enfrentamento da doença, podendo produzir alterações no psiquismo e na história de vida dos indivíduos acometidos. Conclui-se pela necessidade de abordagem ampla de apoio à inclusão social de pacientes sequelados pela hanseníase.

This study aims to analyze the discourses of institutionalized patients with leprosy, focusing on stigma and fight for social inclusion. It is a qualitative study, developed in Casa de Saúde Santa Fé, in Minas Gerais state, Brazil. Ten patients were interviewed from March to October 2011. We adopted the oral history methodology and used discourse analysis in the evaluation of interviews, starting from the psychosocial reference. It was found, in the statements the strength of stigma, as well as its character, seemingly permanent, in the collective imagination regarding leprosy. We realize that the stigma is still strong obstacle in fighting the disease, and may produce changes in the psyche and history of life of affected individuals. We conclude that there is need for comprehensive approach to support the social inclusion of patients with sequelae by leprosy.

A imagem corporal nas ações educativas em autocuidado para pessoas que tiveram hanseníase / Body image in educational actions in self-care for people who had leprosy

Os comprometimentos físicos ocasionados pela hanseníase são pactuados nas ações do Plano Nacional de Controle da Hanseníase e são considerados um grave problema de saúde pública. Como forma de prevenir o avanço de incapacidades, o Ministério da Saúde propõe ações educativas em autocuidado. No entanto, apesar da enfática importância da realização do autocuidado, observa-se a não aderência dos pacientes ao programa, que pode ser justificada, dentre outros motivos, pela desestruturação de sua imagem corporal e pelo estigma advindo das representações sociais do corpo "leproso". Sendo assim, acredita-se na importância de ampliar o discurso tecnicista nas ações educativas em autocuidado, considerando a imagem corporal como aspecto importante nas estratégias de tratamento da doença. Objetiva-se conhecer a imagem corporal de pessoas que tiveram hanseníase e que desenvolveram incapacidades físicas. Para tanto, aplicou-se o teste psicológico Desenho da Figura Humana (DFH), com ênfase na análise interpretativa das mãos e dos pés, locais mais afetados pela hanseníase, em cinco mulheres cadastradas e em acompanhamento no Programa de Autocuidado em Hanseníase de um Ambulatório Regional de Especialidades de um município do Vale do Paraíba Paulista. O teste foi realizado no período de março a dezembro de 2009. Os resultados revelaram a não inclusão ou a desfiguração de mãos e pés. Existe uma falta de integração dessas regiões à consciência, acarretando desestruturação da imagem corporal, que pode decorrer tanto da perda de sensibilidade cutânea como da deformidade advindas da doença. Infere-se que essa desestruturação da imagem corporal dificulta a aderência ao autocuidado e a sociabilização dessas pessoas, aumentando o estigma da hanseníase...

Physical impairment caused by leprosy are agreed in the National Plan for Leprosy Control and are considered a serious public health problem. In order to prevent the advance of disabilities, the Ministry of Health proposes educational actions in self-care. However, despite the emphatic importance of performing self-care, we observe non-adherence of patients to the program, which may be explained, among other reasons, by the destruction of their body image and the stigma arising from the social representations of the "leprous" body. Thus, we believe in the importance of increasing the technicist discourse in educational actions in self-care, considering body image as an important aspect in the treatment strategies of the disease. We aim to meet the body image of people who had leprosy and developed disabilities. For this, we applied the psychological test Human Figure Drawing (HFD), with emphasis on interpretive bnalysis of the hands and feet, the most affected by leprosy, in five women registered and monitored by the Self-Care Program in Leprosy, in a Regional Outpatient Clinic in the district of Vale do Paraíba Paulista. The test was conducted from March to December 2009. Results revealed the inclusion or disfigurement of hands and feet. There is a lack of integration between these regions and awareness, causing disruption of body image, which may result from both loss of cutaneous sensibility and the resulting deformity disease. It is inferred that this disruption of body image hinders adherence to self-care and socialization of these people, increasing the stigma of leprosy...

Sonhos interrompidos, caminhos desviados: marcas amenizadas por pensões / Interrupted dreams, deviated pathways: marks aleviated by pension

Este artigo é resultado de pesquisa da Divisão Técnica de Hanseníase da Secretaria de Saúde do Estado de São Paulo realizada com pessoas acometidas pela hanseníase e que recebem pensões do Estado desde 1954, como política compensatória. Foi utilizado inquérito de saúde de base populacional com universo de 631 beneficiários, sendo entrevistados, através de um formulário, 485 sujeitos. As entrevistas com os pensionistas foram realizadas em Unidades de Saúde e nos antigos Hospitais-Colônia onde ainda vivem remanescentes do isolamento compulsório. A pesquisa foi dividida em duas fases: aspectos sociais, com questões fechadas e abertas, e avaliação de incapacidades.Portanto, trata-se de pesquisa com abordagem quantiqualitativa, que valorizou o discurso dos sujeitos.Os principais resultados qualitativos comprovam a importância do rendimento auferido pela pensão na sobrevivência dos pensionistas e familiares, bem como o impacto da hanseníase e do isolamento compulsório na vida destas pessoas.

Leprosy is a slow course, chronic, granulomatous infectious disease caused by Mycobacterium leprae.The disease causes lesions on face, hands and feet,which can generate severe physical disabilities that contribute to the installation of deformities and disabling patterns. The claw hand type lesion is a sequel observed in patients with upper limbs lesions. It canbe very disabling, making it difficult to the individuals to carry out their Daily Living Activities whichim pairs their quality of life and personal satisfaction.The occupational therapy intervention using low costassistive technology to aid in daily living activities ofpatients with claw hand aims at minimizing motorand manual dexterity deficits. Thus, this study aimsto demonstrate the self perception of patients about improving their feeding performance activity afteruse of functional adaptation. We conducted the Canadian Model of Occupational Performance protocol before and after 10 training interventions with adaptation to feeding activity to evaluate the perception of 20 patients on the Performance and Satisfaction with the performance of Daily Living Activities. It was observed that the variables showed improved indices with increase in the independence levels. The material proposed and used in this study showed to beadequate to the confection of the adaptations thatwere developed, which promoted reduction of costs.The adaptations developed in this study showed favorable results with statistical significance, obtained through analysis of the final data.

Privação e padecimento: uma compreensão existencial do ser frente à Hanseníase / Deprivation and suffering: an existential understanding of the Being front the leprosy

Este estudo teve como objetivo compreender a experiência de privação e padecimento em pessoas que vivenciaram o processo de isolamento compulsório po rhanseníase. Na perspectiva da Pesquisa Qualitativa e da Fenomenologia Existencial foram realizadas entrevistas narrativas com 06 pessoas, de ambos os sexos, que vivenciaram o processo de asilamento em um hospital colônia no estado de Minas Gerais. O discurso dos entrevistados revela que a hanseníase levou a uma ruptura no projeto existencial dos sujeitos, restringindo a liberdade do Dasein e substituindo o seu mundo próprio e familiar por outro marcado pela dor, privação e sofrimento. O estigma da doença dificultou a reinserção social,de modo que mesmo após a desinstitucionalização os entrevistados permaneceram na colônia. Apesar do sofrimento, os participantes construíram novas formas de enfrentamento e ainda novos significados à existência e ao padecimento.

This study aimed to understand the experience of deprivation and suffering of people who experienced the process of compulsory isolation of leprosy. In the view of the Qualitative Research and the Existential Phenomenology, narrative interviews were conducted with 06 people of both sexes who experienced the process of institutionalization in a colony hospital in the state of Minas Gerais. The speech of the respondents reveals that leprosy led to a rupture in the existential project of the subjects, restricting the freedom of Dasein and substituting their own world and family by other marked by pain, deprivation and suffering. The stigma of the disease prevented social reintegration, so that, even after deinstitutionalization, respondents remained in the colony. Despite the suffering, the participants constructed new ways of coping and even new meaning to the existence and suffering

Leprosy stigma: ironing out the creases.

Oft-cited as a deterrent to elimination of the disease, stigma is still a critical feature of the leprosy landscape leading to ostracism, loss of employment, loss of housing, ridicule and rejection from society. The reason for leprosy-stigma rests historically and culturally on the mythology about the disease's origin and transmission, and its aesthetic features such as the enigmatic physical disfigurement, and the distinctive ulcers consequent of untreated leprosy. While the literature on leprosy has been consistent in showing that stigma is a social complication of the condition worldwide, there is seldom recognition of processes of stigmatisation in broader contexts. Effective and sustainable interventions directed at curbing leprosy stigma and so improving its social course must, however, be informed by an appreciation of such contexts; particularly in the light of the goal to eliminate the disease worldwide. Examining stigma in the broader contexts of historical, social, economic, political contexts is the aim of this paper. The paper also has implications for broad ranging intervention efforts aimed at de-constructing leprosy-stigma in order to craft a more accommodating ambiance of acceptance, care and support for people affected by leprosy.

Social implications of leprosy in the Netherlands--stigma among ex-leprosy patients in a non-endemic setting.

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.

The inclusivity of exclusion: isolation and community among leprosy-affected people in the South Pacific.

From 1911 to 1969 those people diagnosed with leprosy in the South Pacific were gradually isolated and received medical treatment at the Central Lepers' Hospital, Makogai Island, Fiji. Until the discovery of sulfones in the 1940s leprosy was largely incurable and it was expected that those who went to the island would never return. This paper assumes that the stigma attendant on leprosy which provoked the isolation order is itself a form of disability. The paper draws on patients'stories to explore their individual and collective experience of isolation and suggests that for many, collective isolation on Makogai was an enabling experience. On Makogai, leprosy was the 'norm', the social disability of stigma was removed and people were able to be self-sufficient, to build community and social relationships and to live a fairly ordinary island life.

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.

Impacts of the diagnosis of leprosy and of visible impairments amongst people affected by leprosy in Cebu, the Philippines.

PURPOSE: To quantify the impact of the diagnosis of leprosy and of visible impairments in people affected by leprosy. SUBJECTS AND METHODS: Three interview-based questionnaires designed to measure activity limitation, participation restriction, and general self-efficacy were used to collect data from three Groups. Group 1: leprosy affected people with visible impairment, Group 2: newly diagnosed leprosy patients with no visible impairment, Group 3: patients with other skin diseases symptomatic for more than 1 month. RESULTS: One hundred and eight subjects were recruited. The subjects with visible impairments (Group 1) had higher levels of participation restriction than those with skin disease (P0.012), and participation restriction was similar between subjects in Groups 2 and 3 (P0-305). The people in Group 1 (35 subjects) also reported significantly more activity limitation compared to the people in either Group 2 (35 subjects) or Group 3 (38 subjects) (P 0-001, respectively). The subjects in Group 2 had no significant activity limitation compared with those in Group 3 (P0.338). A multivariate analysis showed that severe visible impairment was a risk factor for activity limitation (odds ratio 5.68, 95% CI: 1.09-297, P0.039) and a low level of self-efficacy (Odds ratio 6.38, 95% CI: 1.06-38.3, P0-043) among people affected by leprosy. CONCLUSION: Visible impairments affected the activities and attitudes of people affected by leprosy. However, others without visible impairment, had activity limitations, participation restrictions and levels of general self-efficacy that were similar to patients with other skin diseases. Prevention of visible impairments should be considered a key intervention for stigma reduction.

[Hansen's disease, exclusion and prejudice: life histories of women at Santa Catarina State]. / Hanseníase, exclusão e preconceito: histórias de vida de mulheres em Santa Catarina.

This article describes historical notes about leprosy, from the discovery of the bacillus to the treatment done today. In this text we try to analyze the perception of some women, former leprosy patients, residents of Santa Teresa Hospital, located in the city of São Pedro de Alcântara, Santa Catarina State, on the stigma, prejudice and exclusion they suffered and still suffer today. We used the oral history of three women for research purposes and we found as a result of this "excluding" treatment over the years, that it built some kind of rejection about the disease. The search and affirmation of the identity of the stigmatized subject has become a constant. The model of social acceptance and the fact of being recognized as different and not discriminated is the main issue.