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.

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.

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.

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.

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.

Partnership for rehabilitation: looking beyond impairments.

Rehabilitation of leprosy-affected persons extends beyond the physical domain of prevention and treatment of impairments. A holistic rehabilitative approach should include addressing those problems that people may have in activities and difficulties that may prevent people from fully participating in social functions, i.e. being fully accepted as integrated members of the societies and communities to which they belong. This article highlights the activities of the Partnership for the Rehabilitation Program (PFR) of the International Nepal Fellowship (INF), Pokhara, Nepal. These activities aim to prevent, reduce or alleviate problems and difficulties that leprosy-affected persons may face in being respected and being contributing members of the communities of which they are a part.

Public communication campaigns in the destigmatization of leprosy; a comparative analysis of diffusion and participatory approaches. A case study in Gwalior, India

This was an experimental study designed to determine the relative effectiveness of diffusion and participatory strategies (in health campaigns) and the effect of caste on the dependent variables of knowledge, perception of risk, and behavioral involvement that were conceptualized as contributing to leprosy destigmatization in Madhya Pradesh state, India. The multivariate analysis of covariance (MANCOVA) procedure found significant difference between the communication treatments on the dependent variables. The discriminate analysis procedure was used to locate the source of the difference. Yhis procedure identified two significant discriminant functions; cognitive-affective and behavior-affective dimensions. The participatory treatment showed higher knoeledge and lower perception of risk on the cognitive-affective dimension, and higher behavioral involvement on the behavior-affective dimension, but the diffusion treatment showed only lower self-perception of risk on the behavior-affective dimension. The study concluded that participatory strategies promoting dialogue and interaction and incorporating people's knowlwdge and action component result in increased knowledge, lower percption of risk, higher bahavioral involvement, and, hence, destigmatization.

Stains on the caring mantle. Doctors in aboriginal Australia have a history.

Doctors new to Aboriginal Australia are not infrequently surprised that their choice to work with the needy and underprivileged is not cause for unconditional positive regard. The naïveté of this position reflects the assumption that the nature of medical work somehow separates doctors from other less caring Europeans who have intruded into Aboriginal Australia. In this paper the ambivalence with which medical professionals are viewed by Aborigines is explored through an examination of particular historical instances drawn from northern Australia, particularly the Kimberley region of Western Australia. It may be that a willingness to interrogate preconceived notions of privileged access will be in the best interests of the profession, and of doctors choosing to work in Aboriginal Australia.

Implicaçoes da perda da perscepçao tátil dos pacientes hansenianos no relacionamento com ambiente e na interrelaçao social

Nesta pesquisa investigou-se as implicaçoes da ausência de sensibilidade tátil e consegüente percepçao dos indivíduos portadores de hanseníase. Foram estudados 30 sujeitos adultos, subdivididos em três grupos, de acordo com a pré-determinaçao do grau de comprometimento da sensibilidade tátil das maos, sendo metade composta por sujeitos de sexo masculino e a outra metade por sujeitos do sexo femenino. A investigaçao divide-se em dois estudos: o primeiro comtém: a) a relaçao dos sujeitos com materiais e/ou objetos (comportando forma, textura, instrumentos) com a utilizaçao de uma atividade com material moldável (argila), em duas situaçoes distintas para os sujeitos: de olhos vendados e de olhos abertos. Tal atividade foi filmada em vídeo-teipe. Categorizou-se os movimentos realizados na execuçao da atividade, com reconhecimento de 12 categorias,, b) a manifestaçao de ânimo dos sujeitos face a condiçao do teste (de olhos vendados e abertos), c) a interrelaçao dos sujeitos com os demais pessoas e consigo mesma através do tato. Estes dois itens foram pesquisados por meio de um questionário