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1.
Rev Bras Enferm ; 75Suppl 2(Suppl 2): e20210410, 2022.
Artigo em Inglês, Português | MEDLINE | ID: mdl-35674536

RESUMO

OBJECTIVES: to analyze the socio-discursive representations about leprosy produced in posters of educational campaigns of the Brazilian Ministry of Health. METHODS: a documentary and discursive research about posters of campaigns about leprosy produced by the Brazilian Ministry of Health and available on Google Search Images. For the analysis, we used the Critical Discourse Analysis approach and the Grammar of Visual Design. RESULTS: the socio-discursive representations of leprosy are based on the biomedical ideology, through a normative-curative discourse that focuses on the dermatological manifestations of the disease. Regarding the construction of the compositional space, there are posters that emphasize the meaning that the disease does not prevent affectionate relationships, and others highlight as "new" the clinical manifestations of the disease. FINAL CONSIDERATIONS: the normative-curative discourse produced in the campaigns is not enough to face stigma related to the disease. For leprosy to be understood as a common chronic disease, it is first necessary to fight the "social leprosy": the stigma.


Assuntos
Hanseníase , Brasil , Humanos , Hanseníase/prevenção & controle , Estigma Social
2.
PLoS Negl Trop Dis ; 16(3): e0010201, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-35299228

RESUMO

Leprosy, or Hansen's disease, is one of the oldest infectious diseases in the world. It has long been associated with stigma and discrimination, but only in recent years has this aspect been formally recognized by the international community as a human rights issue. The UN Human Rights Council first adopted a resolution on leprosy in 2008, and this was later followed by a UN General Assembly resolution in 2010. Nonbinding principle and guidelines on elimination of discrimination against persons affected by leprosy and their family members accompanied the 2010 resolution, but these have yet to be fully implemented. In 2017, the Human Rights Council appointed a Special Rapporteur on leprosy to investigate the extent to which the principles and guidelines have been implemented, and her term was extended for a further 3 years in 2020. Considering the proper implementation of the principles and guidelines to be key to eliminating the discrimination that persons affected by leprosy and their families face in various parts of the world, this paper looks at the contribution the Special Rapporteur can make. Based on an assessment of her activities to date, it concludes that the Special Rapporteur has actively worked to build networks with persons affected by leprosy and related organizations and gain their trust, but has faced challenges in organizing official country visits. It goes on to analyze what sort of legacy the Special Rapporteur should aim to leave behind after completing her second term and how she can go about doing so in the time remaining. To this end, it makes 5 suggestions: (1) gather information systematically on the actual situation of discrimination; (2) compile a collection of success stories; (3) ensure that there is consistency between legally binding international covenants and treaties and the principles and guidelines; (4) present proposals for concrete actions that can be taken after the Special Rapporteur's second term ends; and (5) initiate a feasibility study on creating an "index" and "indicators" to measure the current status of stigma and discrimination and the extent to which the principles and guidelines have been implemented.


Assuntos
Direitos Humanos , Hanseníase , Feminino , Humanos , Cooperação Internacional , Hanseníase/prevenção & controle , Estigma Social , Nações Unidas
3.
PLoS Negl Trop Dis ; 16(3): e0010335, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-35344566

RESUMO

BACKGROUND: Community participation and implementing interventions based on the community are key strategies to eliminate leprosy. Health professionals have an essential role as they are a necessary source of information because of their knowledge and experience, as well as their comprehensive perspective of contexts included in the programmes. This study has the aim of analysing the perceptions on the development of programmes with people affected by leprosy from the perspective of professionals that work at different organisations in endemic contexts. METHODOLOGY: A qualitative study was carried out with the written response to an open question questionnaire which was sent by email. The script content was related to positive aspects and difficulties in daily work, participation from the community in activities, contribution to gender equality and programme sustainability. 27 health professionals were interviewed, 14 women and 13 men, all of which belonged to 16 organisations in India and Brazil. Once the content of the interviews was analysed, two main topics emerged: barriers perceived by professionals and proposals to improve the sustainability of the programmes. PRINCIPAL FINDING: Professionals identify barriers related to social stigma, inequalities, gender inequalities, difficulty managing the disease, limited services, lack of resources and lack of community participation. Furthermore, some necessary recommendations were taken into account to improve programme development related to: Eliminating stigma, reaching gender equality, developing adequate and effective services, guaranteeing adequate and quality resources and achieving compassion among professionals. CONCLUSIONS: Although introducing community programmes with people affected by leprosy has a long history in countries such as India and Brazil, there are still several barriers that can hinder their development. Based on the specific needs of the contexts, recommendations are suggested that, with the involvement of all parties and with sensitive approaches towards human rights and gender, they could help to guarantee universal health coverage and the sustainability of said programmes.


Assuntos
Hanseníase , Feminino , Humanos , Hanseníase/epidemiologia , Hanseníase/terapia , Masculino , Avaliação de Programas e Projetos de Saúde , Pesquisa Qualitativa , Estigma Social , Inquéritos e Questionários
4.
Recurso na Internet em Inglês, Espanhol, Português | LIS | ID: lis-48612

RESUMO

La campaña #United4Dignity hace una llamada a la unidad para defender la dignidad de las personas que han padecido lepra. La campaña rinde homenaje a las experiencias vividas por personas que han pasado la lepra al 1) compartir sus historias de empoderamiento y 2) abogar por el bienestar mental y el derecho a una vida digna sin el estigma de la lepra.


Assuntos
Hanseníase , Estigma Social
5.
PLoS Negl Trop Dis ; 16(1): e0010132, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-35061673

RESUMO

BACKGROUND: Lower limb disorders including lymphoedema create a huge burden for affected persons in their physical and mental health, as well as socioeconomic and psychosocial consequences for them, their families and communities. As routine health services for the integrated management and prevention of lower limb disorders are still lacking, the 'Excellence in Disability Prevention Integrated across Neglected Tropical Diseases' (EnDPoINT) study was implemented to assess the development and delivery of an integrated package of holistic care-including physical health, mental health and psychosocial care-within routine health services for persons with lower limb disorders caused by podoconiosis, lymphatic filariasis and leprosy. METHODOLOGY/PRINCIPAL FINDINGS: This study was part of the first of three phases within EnDPoINT, involving the development of the integrated care package. Focus group discussions and key informant interviews were undertaken with 34 participants between January-February 2019 in Awi zone, Ethiopia, in order to assess the draft care package's feasibility, acceptability and appropriateness. Persons affected by lower limb disorders such as lymphoedema experience stigma, exclusion from families, communities and work as well as physical and financial hardship. Beliefs in disease causation inhibit affected persons from accessing care. Ignorance was a barrier for health care providers as well as affected persons. Training and education of affected persons, communities and caregivers is important in improving care access. It also requires time, space, materials and financial resources. Both top-down and grass roots input into service development are key, as well as collaboration across stakeholders including charities, community leaders and "expert patients". CONCLUSIONS/SIGNIFICANCE: This study highlighted the need for the EnDPoINT integrated care package and provided suggestions for solutions according to its three aspects of integrated care (integration into routine care; integration of mental health and psychosocial care; and integration of care across the three diseases), thereby giving support for its feasibility, acceptability and appropriateness.


Assuntos
Prestação Integrada de Cuidados de Saúde/métodos , Filariose Linfática/epidemiologia , Elefantíase/epidemiologia , Hanseníase/epidemiologia , Linfedema/psicologia , Adulto , Elefantíase/psicologia , Elefantíase/terapia , Filariose Linfática/psicologia , Filariose Linfática/terapia , Etiópia/epidemiologia , Feminino , Grupos Focais , Serviços de Saúde , Saúde Holística , Humanos , Hanseníase/psicologia , Hanseníase/terapia , Extremidade Inferior/patologia , Linfedema/epidemiologia , Linfedema/terapia , Masculino , Pessoa de Meia-Idade , Reabilitação Psiquiátrica , Estigma Social , Adulto Jovem
6.
Qual Health Res ; 32(4): 622-634, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34904455

RESUMO

A constructivist grounded theory approach was used to understand how some people living with stigmatized health conditions develop positive deviance to overcome stigma. We examined interviews from 13 identified positive deviants living with four different stigmatized health conditions (HIV, leprosy, schizophrenia, and diabetes) in Indonesia. Positive deviance develops in the form of psychological empowerment through improvement of self-belief and perception (intrapersonal component), development of understanding and skill to exert control in life (interactional component), and self-discovery of successful behaviors and strategies to avert stigma (behavioral component). Positive deviants, after being empowered, start empowering others affected by sharing their knowledge and fostering social awareness and acceptance. The findings revealed the presence of problem-solving ability and agency within the community of stigmatized individuals in Indonesia and warrant researchers to partner with the community to expedite the diffusion of transferable positive deviant strategies within and outside the communities.


Assuntos
Hanseníase , Esquizofrenia , Teoria Fundamentada , Humanos , Indonésia , Hanseníase/psicologia , Estigma Social
7.
Esc. Anna Nery Rev. Enferm ; 26: e20210114, 2022. graf
Artigo em Português | LILACS, BDENF | ID: biblio-1350749

RESUMO

Resumo Objetivo avaliar a descentralização do Programa de Controle da Hanseníase (PCH) em Governador Valadares. Método o referencial teórico-metodológico foi a Avaliação de Quarta Geração, de abordagem qualitativo-participativa. O estudo envolveu 30 sujeitos divididos em quatro grupos: gestores do PCH; profissionais do Centro de Referência (CR); profissionais da atenção básica e usuários. Os dados foram coletados por entrevistas, utilizando-se a técnica do Círculo Hermenêutico-Dialético. Posteriormente, realizaram-se três oficinas de validação e negociação dos dados. Utilizou-se o Método Comparativo Constante para a análise. Resultados evidenciou-se a manutenção do modelo vertical de atenção à hanseníase, sustentado por determinantes sócio-histórico-culturais que se expressam: na permanência da porta de entrada à demanda espontânea no CR; no encaminhamento rotineiro do usuário para a atenção secundária; na ineficiência da contrarreferência; na centralização da poliquimioterapia; na crença na necessidade do atendimento especializado e no estigma. Evidenciaram-se fragilidades no vínculo com a atenção primária. Conclusão a descentralização do PCH envolve a tensão entre os atores de cada ponto de atenção à saúde, gerando disputas de saberes e práticas de saúde. Implicações para a prática a sustentabilidade da descentralização requer envolvimento político e institucional focado no fortalecimento da atenção primária, na reorientação do papel dos serviços na rede de atenção à hanseníase e na educação em saúde.


Resumen Objetivo evaluar la descentralización del Programa de Control de la Lepra (PCL) en Governador Valadares. Método el marco teórico-metodológico fue la Evaluación de Cuarta Generación, con un enfoque cualitativo-participativo. El estudio involucró a 30 sujetos, divididos en cuatro grupos: gerentes del PCL; profesionales del Centro de Referencia (CR); profesionales de atención primaria y usuarios. Los datos fueron recolectados a través de entrevistas, utilizando la técnica del Círculo Hermenéutico-Dialéctico. Posteriormente se realizaron tres talleres de validación y negociación de los datos. Para el análisis se utilizó el Método Comparativo Constante. Resultados se evidenció el mantenimiento del modelo vertical de atención a la lepra, sustentado en determinantes socio-histórico-culturales que se expresan en la permanencia del ingreso a la demanda espontánea en el CR; en la derivación rutinaria del usuario a atención secundaria; en la ineficiencia de la contrarreferencia; en la centralización de la poliquimioterapia; en la creencia en la necesidad de atención especializada y en el estigma. Se evidenciaron debilidades en el vínculo con la atención primaria. Conclusión la descentralización del PCH involucra la tensión entre los actores en cada punto de la atención en salud, generando disputas sobre conocimientos y prácticas de salud. Implicaciones para la práctica la sostenibilidad de la descentralización requiere de una participación política e institucional, enfocada en el fortalecimiento de la atención primaria, reorientando el rol de los servicios en la red de atención a la lepra y en la educación para la salud.


Abstract Objective to evaluate the decentralization of the Leprosy Control Program (LCP) in Governador Valadares. Method the theoretical and methodological framework was the Fourth Generation Evaluation, with a qualitative-participatory approach. The study involved 30 subjects divided into four groups: managers of the LCP; professionals of the Reference Center (RC); primary care professionals and users. Data were collected through interviews, using the Hermeneutic-Dialectic Circle technique. Subsequently, three workshops were held for data validation and negotiation. The Constant Comparative Method was used for the analysis. Results the maintenance of the vertical model of leprosy care was evidenced, sustained by social-historical-cultural determinants that are expressed in: the permanence of the gateway to spontaneous demand in the RC; the routine referral of the user to secondary care; the inefficiency of counter-reference; the centralization of multidrug therapy; the belief in the need for specialized care, and stigma. Weaknesses in the link with primary care were evidenced. Conclusion and implications for practice The sustainability of decentralization requires political and institutional involvement focused on strengthening primary care, reorienting the role of the services in the leprosy care network, and health education. The decentralization of the LCP involves tension between the actors of each health care point, generating disputes of knowledge and health practices.


Assuntos
Humanos , Atenção Primária à Saúde , Avaliação em Saúde , Hanseníase/prevenção & controle , Programas Nacionais de Saúde , Encaminhamento e Consulta , Atenção Secundária à Saúde , Brasil , Pessoal de Saúde , Pesquisa Qualitativa , Estigma Social
8.
S Afr Fam Pract (2004) ; 63(1): e1-e6, 2021 10 29.
Artigo em Inglês | MEDLINE | ID: mdl-34797098

RESUMO

Leprosy (Hansen's disease) can affect multiple organs and body structures. Skin signs are typically observed in the early phase of the disease, hence being the first identifiable signs to propel clinical suspicion. Leprosy predominantly affects the skin and peripheral nerves. The disease has been documented many centuries preceding the biblical era. Over many decades, the classification of Hansen's disease has changed as modern medical science evolved. Patients with leprosy are usually subjected to discrimination, rejection from society and can suffer from social stigma, poor quality of life (QoL), low self-esteem and permanent disfigurements. Studies have shown that leprosy has a significant negative impact on the patients' QoL. Leprosy is often not suspected by practicing clinicians because it is no longer emphasised in the medical curricula. In modern years, attention has gradually shifted from leprosy to tuberculosis (TB) and human immunodeficiency virus (HIV).


Assuntos
Hanseníase , Qualidade de Vida , Afeto , Bíblia , Humanos , Hanseníase/diagnóstico , Estigma Social
9.
PLoS Negl Trop Dis ; 15(8): e0009651, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-34383768

RESUMO

BACKGROUND: The number of new leprosy cases is declining globally, but the disability caused by leprosy remains an important disease burden. The chance of disability is increased by delayed case detection. This review focusses on the individual and community determinants of delayed leprosy case detection. METHODS: This study was conducted according to the PRISMA guidelines (Preferred Reporting Items for Systematic Reviews and Meta-Analysis). The study protocol is registered in PROSPERO (code: CRD42020189274). To identify determinants of delayed detection, data was collected from five electronic databases: Embase.com, Medline All Ovid, Web of Science, Cochrane CENTRAL, and the WHO Global Health Library. RESULTS: We included 27 papers from 4315 records assessed. They originated in twelve countries, had been published between January 1, 2000, and January 31, 2021, and described the factors related to delayed leprosy case detection, the duration of the delayed case, and the percentage of Grade 2 Disability (G2D). The median delay in detection ranged from 12 to 36 months, the mean delay ranged from 11.5 to 64.1 months, and the percentage of G2D ranged from 5.6 to 43.2%. Health-service-seeking behavior was the most common factor associated with delayed detection. The most common individual factors were older age, being male, having a lower disease-symptom perception, having multibacillary leprosy, and lack of knowledge. The most common socioeconomic factors were living in a rural area, performing agricultural labor, and being unemployed. Stigma was the most common social and community factor. CONCLUSIONS: Delayed leprosy case detection is clearly correlated with increased disability and should therefore be a priority of leprosy programs. Interventions should focus on determinants of delayed case detection such as health-service-seeking behavior, and should consider relevant individual, socioeconomic, and community factors, including stigmatization. Further study is required of the health service-related factors contributing to delay.


Assuntos
Diagnóstico Tardio/estatística & dados numéricos , Pessoas com Deficiência/estatística & dados numéricos , Hanseníase/complicações , Hanseníase/epidemiologia , Tempo para o Tratamento/estatística & dados numéricos , Humanos , Hanseníase/diagnóstico , Hanseníase/tratamento farmacológico , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Fatores de Risco , Estigma Social , Fatores Socioeconômicos
10.
Psychiatriki ; 32(3): 183-186, 2021 Sep 20.
Artigo em Grego Moderno, Inglês | MEDLINE | ID: mdl-34390552

RESUMO

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.


Assuntos
COVID-19 , Transtornos Mentais , Distanciamento Físico , Distância Psicológica , Angústia Psicológica , Intervenção Psicossocial/métodos , Estigma Social , COVID-19/complicações , COVID-19/epidemiologia , COVID-19/prevenção & controle , COVID-19/psicologia , COVID-19/transmissão , Controle de Doenças Transmissíveis/métodos , Transmissão de Doença Infecciosa/prevenção & controle , Grécia/epidemiologia , Humanos , Transtornos Mentais/epidemiologia , Transtornos Mentais/fisiopatologia , SARS-CoV-2 , Discriminação Social/prevenção & controle , Discriminação Social/psicologia , Isolamento Social/psicologia , Tempo para o Tratamento
11.
PLoS Negl Trop Dis ; 15(8): e0009654, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-34424909

RESUMO

INTRODUCTION: Since ancient times leprosy has had a negative perception, resulting in stigmatization. To improve the lives of persons affected by leprosy, these negative perceptions need to change. The aim of this study is to evaluate interventions to change perceptions and improve knowledge of leprosy. METHODOLOGY/PRINCIPAL FINDINGS: We conducted a pre-post intervention study in Fatehpur and Chandauli districts, Uttar Pradesh, India. Based on six steps of quality intervention development (6SQuID) two interventions were designed: (1) posters that provided information about leprosy and challenged misconceptions, and (2) meetings with persons affected by leprosy, community members and influential people in the community. The effect of the interventions was evaluated in a mixed-methods design; in-depth interviews, focus group discussions, and questionnaires containing a knowledge measure (KAP), two perception measures (EMIC-CSS, SDS) and an intervention evaluation tool. 1067 participants were included in Survey 1 and 843 in Survey 2. The interventions were effective in increasing knowledge of all participant groups, and in changing community and personal attitudes of close contacts and community members (changes of 19%, 24% and 13% on the maximum KAP, EMIC-CSS and SDS scores respectively, p<0.05). In Survey 1, 13% of participants had adequate knowledge of leprosy versus 53% in Survey 2. Responses showed stigmatizing community attitudes in 86% (Survey 1) and 61% (Survey 2) of participants and negative personal attitudes in 37% (Survey 1) and 19% (Survey 2). The number of posters seen was associated with KAP, EMIC-CSS and SDS scores in Survey 2 (p<0.001). In addition, during eight post-intervention focus group discussions and 48 interviews many participants indicated that the perception of leprosy in the community had changed. CONCLUSIONS/SIGNIFICANCE: Contextualized posters and community meetings were effective in changing the perception of leprosy and in increasing leprosy-related knowledge. We recommend studying the long-term effect of the interventions, also on behavior.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Hanseníase/epidemiologia , Hanseníase/psicologia , Percepção Social , Adulto , Feminino , Grupos Focais , Humanos , Índia/epidemiologia , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Análise de Regressão , Estigma Social , Inquéritos e Questionários , Adulto Jovem
12.
Trans R Soc Trop Med Hyg ; 115(9): 1086-1087, 2021 09 03.
Artigo em Inglês | MEDLINE | ID: mdl-34302735

RESUMO

Brazil has been at the forefront in replacing the stigmatising term 'leprosy' with the non-pejorative alternative 'Hansen's disease' ('hanseníase'), with use of the former word prohibited by law since 1995. This change followed decades of advocacy, including by civil society organisations representing people affected by the disease. A survey of people affected by Hansen's disease in Brazil found that 111/112 respondents preferred the alternative term, supporting the view that consideration of non-stigmatising terminology that respects the wishes of people affected by the disease should be part of the WHO Global Leprosy (Hansen's disease) Strategy to achieve 'zero stigma' by 2030.


Assuntos
Hanseníase , Brasil/epidemiologia , Consenso , Humanos , Hanseníase/epidemiologia , Estigma Social , Inquéritos e Questionários
13.
PLoS Negl Trop Dis ; 15(4): e0009329, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33798199

RESUMO

BACKGROUND: Leprosy and leprosy-related stigma can have a major impact on psychosocial wellbeing of persons affected and their family members. Resilience is a process that incorporates many of the core skills and abilities which may enable people to address stigma and discrimination. The current study aimed to develop and pilot an intervention to strengthen individual and family resilience against leprosy-related discrimination. METHODOLOGY: We used a quasi-experimental, before-after study design with a mixed methods approach. The 10-week family-based intervention was designed to strengthen the resilience of individuals and families by enhancing their protective abilities and capacity to overcome adversity. The study was conducted in two sites, urban areas in Telangana state, and in rural areas in Odisha state, India. Persons affected and their family members were included using purposive sampling. Two questionnaires were used pre-and post-intervention: the Connor-Davidson Resilience Scale (CD-RISC, maximum score 100, with high scores reflecting greater resilience) and the WHOQOL-BREF (maximum score of 130, with higher scores reflecting higher quality of life). In addition, semi-structured interviews were conducted post-intervention. Data were collected at baseline, a few weeks after completion of the intervention, and in the Odisha cohort again at six months after completion. Paired t-tests measured differences pre- and post- intervention. Qualitative data were thematically analysed. FINDINGS: Eighty participants across 20 families were included in the study (23 persons affected and 57 family members). We found a significant increase in CD-RISC scores for persons affected and family members from Odisha state (baseline 46.5, first follow-up 77.0, second follow-up 70.0), this improvement was maintained at six-month follow-up. There was no increase in CD-RISC scores post-intervention among participants from Telangana state. WHOQOL-BREF scores were significantly higher at follow-up for persons affected in both states, and for family members in Odisha state. No families dropped out of the study. In the qualitative feedback, all participants described drawing benefit from the programme. Participants especially appreciated the social dimensions of the intervention. CONCLUSION: This pilot study showed that the 10-week family-based intervention to strengthen resilience among persons affected by leprosy and their family members was feasible, and has the potential to improve resilience and quality of life. A large-scale efficacy trial is necessary to determine the effectiveness and long-term sustainability of the intervention.


Assuntos
Saúde da Família , Família/psicologia , Hanseníase/psicologia , Qualidade de Vida/psicologia , Resiliência Psicológica , Adulto , Feminino , Humanos , Índia , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Pesquisa Qualitativa , Estigma Social , Inquéritos e Questionários , Adulto Jovem
14.
Nova Delhi; WHO; 15/04/2021. 30 p. tab, ilus, graf.
Monografia em Inglês | SES-SP, SES-SP, HANSEN, HANSENIASE, SESSP-ILSLACERVO, SES-SP | ID: biblio-1179115

RESUMO

The Global Leprosy Strategy 2021­2030 "Towards zero leprosy" was developed through a broad consultative process with all major stakeholders during 2019 and 2020. Valuable inputs were provided by national leprosy programme managers, technical agencies, public health and leprosy experts, funding agencies and persons or members of communities directly affected by leprosy. The Strategy aims to contribute to achieving the Sustainable Development Goals. It is structured along four pillars: ( i) implement integrated, country-owned zero leprosy road maps in all endemic countries; ( ii) scale up leprosy prevention alongside integrated active case detection; ( iii) manage leprosy and its complications and prevent new disability; and, ( iv) combat stigma and ensure human rights are respected. Interruption of transmission and elimination of disease are at the core of the Strategy


Assuntos
Organização Mundial da Saúde , Estratégias de Saúde Globais , Doenças Endêmicas , Prevenção de Doenças , Estigma Social , Hanseníase/complicações , Hanseníase/prevenção & controle , Hanseníase/epidemiologia
15.
Int Health ; 13(6): 527-535, 2021 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-33547894

RESUMO

BACKGROUND: Individuals affected by Hansen's disease (leprosy) often experience stigma and discrimination. Greater psychosocial resilience may enable people to deal with such discrimination. This study aimed to explore sources of strength and resilience for individuals affected by Hansen's disease in Brazil. METHODS: We used a cross-sectional study design with a qualitative approach. Semistructured focus groups were conducted. Analysis comprised thematic categorisation of transcripts. RESULTS: Thirty-one participants were included: 23 individuals affected by Hansen's disease and 8 healthcare providers. We found that while a few individuals affected were provided with formal psychological support in the early phases of their treatment, many noted the importance of providing such support at this time. Most participants described relationships with and social support from family members, friends and with others affected by Hansen's disease as their primary source of resilience. A key context for building resilience was through the peer-level sharing and engagement experienced in self-care and support groups. Participants also emphasised the importance of providing appropriate information about Hansen's disease and the importance of beliefs and spirituality. CONCLUSIONS: Hansen's disease services should seek to build resilience in early treatment through counselling and during treatment and beyond by having people affected getting together. Across both settings supporting family and social relationships, providing accurate information and acknowledging spiritual beliefs are important.


Assuntos
Hanseníase , Brasil , Estudos Transversais , Família , Humanos , Hanseníase/terapia , Estigma Social
16.
PLoS Negl Trop Dis ; 15(2): e0009167, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33600453

RESUMO

A key issue for persons with leprosy-, lymphatic filariasis- and podoconiosis-related disabilities is the life-long need to practice self-management routines. This is difficult to sustain without regular encouragement and support of others. Family-based support may be a sustainable and feasible strategy to practice self-management routines. This proof of concept study aimed to develop and pilot a family-based intervention to support prevention and self-management of leprosy, lymphatic filariasis and podoconiosis-related disabilities in Ethiopia. We used a quasi-experimental pre/post intervention study design with a mixed methods approach. The study population included persons affected by leprosy, lymphatic filariasis and podoconiosis and their family members. All persons affected had visible impairments due to their condition. We collected physical impairment outcomes, data on activity limitations, stigma and family quality of life using the SALSA scale (range 0-80), the SARI stigma scale (range 0-63) and the Beach Centre Family Quality of Life scale (range 0-125) and conducted in-depth interviews and focus group discussions. Quantitative data were analysed using paired t-tests, unequal variances t-tests, linear regression and binary logistic regression. Qualitative data were coded using open, inductive coding and content analysis. The family-based intervention consisted of self-management of disabilities, awareness raising and socio-economic empowerment. The intervention was delivered over several monthly group meetings over the course of several months. A total of 275 (100%) persons affected attended at least one session with a family member, and 215 (78%) attended at least three sessions. There was no significant improvement in eye and hand problems after the intervention. However, foot and leg impairments, number of acute attacks, lymphedema and shoe wearing all significantly improved at follow-up. In addition, family quality of life significantly improved from 67.4 at baseline to 89.9 at follow-up for family members and from 76.9 to 84.1 for persons affected (p<0.001). Stigma levels significantly decreased from 24.0 at baseline to 16.7 at follow-up (p<0.001). Activity levels improved, but not significantly. This proof of concept study showed that the family-based intervention had a positive effect on impairments and self-management of disabilities, family quality of life and stigma. We recommend a large-scale efficacy trial, using a randomised controlled trial and validated measurement tools, to determine its effectiveness and long-term sustainability.


Assuntos
Pessoas com Deficiência , Filariose Linfática , Elefantíase , Hanseníase , Autogestão/métodos , Adulto , Etiópia , Família , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Estudo de Prova de Conceito , Qualidade de Vida , Estigma Social
17.
PLoS Negl Trop Dis ; 15(1): e0009031, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33476343

RESUMO

BACKGROUND: Understanding how knowledge, attitudes and practices regarding leprosy differ in endemic countries can help us develop targeted educational and behavioural change interventions. This study aimed to examine the differences and commonalities in and determinants of knowledge, attitudes, practices and fears regarding leprosy in endemic districts in India and Indonesia. PRINCIPLE FINDINGS: A cross-sectional mixed-methods design was used. Persons affected by leprosy, their close contacts, community members and health workers were included. Through interview-administered questionnaires we assessed knowledge, attitudes, practices and fears with the KAP measure, EMIC-CSS and SDS. In addition, semi-structured interviews and focus group discussions were conducted. The quantitative data were analysed using stepwise multivariate regression. Determinants of knowledge and stigma that were examined included age, gender, participant type, education, occupation, knowing someone affected by leprosy and district. The qualitative data were analysed using open, inductive coding and content analysis. We administered questionnaires to 2344 participants (46% from India, 54% from Indonesia) as an interview. In addition, 110 participants were interviewed in-depth and 60 participants were included in focus group discussions. Knowledge levels were low in both countries: 88% of the participants in India and 90% of the participants in Indonesia had inadequate knowledge of leprosy. In both countries, cause, mode of transmission, early symptoms and contagiousness of leprosy was least known, and treatment and treatability of leprosy was best known. In both countries, health workers had the highest leprosy knowledge levels and community members the highest stigma levels (a mean score of up to 17.4 on the EMIC-CSS and 9.1 on the SDS). Data from the interviews indicated that people were afraid of being infected by leprosy. Local beliefs and misconceptions differed, for instance that leprosy is in the family for seven generations (Indonesia) or that leprosy is a result of karma (India). The determinants of leprosy knowledge and stigma explained 10-29% of the variability in level of knowledge and 3-10% of the variability in level of stigma. CONCLUSION: Our findings show the importance of investigating the perceptions regarding leprosy prior to educational interventions in communities: even though knowledge levels were similar, local beliefs and misconceptions differed per setting. The potential determinants we included in our study explained very little of the variability in level of knowledge and stigma and should be explored further. Detailed knowledge of local knowledge gaps, beliefs and fears can help tailor health education to local circumstances.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Hanseníase/epidemiologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Índia/epidemiologia , Indonésia/epidemiologia , Masculino , Pessoa de Meia-Idade , Percepção , Estigma Social , Adulto Jovem
18.
Glob Public Health ; 16(12): 1856-1869, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-33253049

RESUMO

ABSTRACTThis study explored the possibility of a common health-related stigma reduction intervention among people living with HIV, leprosy, schizophrenia and diabetes in Indonesia by assessing their perspectives towards others with the same (within group) and different health conditions (across groups), and willingness to participate in such a program. This mixed-methods study was conducted in West Java, Indonesia between March and June 2018. Eighty participants completed a survey with social distance scale (SDS), while 12 focus group discussion were conducted. Participants with HIV, leprosy and diabetes reported lower within-group SDS scores (4.14 ± 3.65; 4.25 ± 3.95; 7.23 ± 5.31, respectively) while those with schizophrenia reported the highest within-group SDS score (7.76 ± 4.63). Participants with diabetes reported a twofold higher across-group SDS score towards people with the other three health conditions (p < 0.05). The qualitative findings showed that the perception of participants towards one another was shaped by knowledge, understanding and relatedness to the experience of living with health-related stigma. Overall, participants supported the idea of a common stigma reduction intervention for different health conditions, but recommended step-wise implementation of such interventions. Accordingly, this study recommends piloting a common stigma reduction intervention with special focus on fostering understanding, awareness and empathy between people living with different health conditions.


Assuntos
Infecções por HIV , Hanseníase , Grupos Focais , Humanos , Indonésia , Estigma Social , Inquéritos e Questionários
19.
s.l; s.n; 2021. 14 p.
Não convencional em Português | HANSENIASE, HANSEN, HANSENIASE | ID: biblio-1147220

RESUMO

Analisar a concepção da mulher portadora de hanseníase na unidade hospitalar Instituto Lauro de Souza Lima (antigo Aimorés), localizado no município de Bauru Estado de São Paulo , com o objetivo de verificar a questão do preconceito vivenciado pela mulher portadora do bacilo de Hansen, como seria a sua inserção na sociedade hospitalar e como seriam aceitas as sequelas que a doença causava no corpo e em seu psicológico. Este estudo é importante para observar como a mulher portadora de hanseníase foi julgada e condenada por padrões médicos e morais de convívio sociais considerados adequados para a vida social e sadia. E como a doença poderia estabelecer condutas de vivência e padrões de convívio sociais, comportamentais e psicológicos distantes daqueles experimentados fora do asilo colônia. A pesquisa foi realizada por meio de texto de memória sobre o asilo colônia Lauro de Souza Lima e de obras historiográficas sobre a temática(AU).


This paper analyzes the woman with leprosy stigma at Lauro de Souza Lima Institute (former Aimorés) located at Bauru, São Paulo State, aiming to verify the prejudice experienced by women with Hansen's bacillus, their insertion in the hospital society and how they would be accepted with body and psychological sequels caused by the disease. This study is important to observe how the woman with leprosy was judged and condemned by medical, moral and social living standards considered adequate for social and healthylife. As well as, how the disease could establish conducts of social, behavioral and psychological living patterns far from those experienced outside the colony asylum. The research was carried out by means of a memory text on the Lauro de Souza Lima colony asylum and historiographical works on the theme(AU).


Assuntos
Humanos , Feminino , Mulheres , Hospitais de Dermatologia Sanitária de Patologia Tropical/história , Hanseníase/psicologia , Desejabilidade Social , Fatores Socioeconômicos , Brasil , Estigma Social , Memória
20.
Multimedia | MULTIMEDIA | ID: multimedia-7468

RESUMO

Maria da Silva Lima relembra a sua história com a hanseníase. Na década de 1970, ela chegou a ser separada da família por ter a doença. Ela saiu do interior do Amazonas para tentar recomeçar a vida em Rondônia. Muitos anos depois, a participação em um grupo de autocuidado e no projeto de reabilitação socioeconômica abriu novos caminhos para superar as marcas da discriminação. Os relatos integram o documentário Além da Hanseníase - Histórias de Esperança. Para conferir o material completo: youtu.be/dy1q46Ah8dY


Assuntos
Hanseníase/história , Preconceito , Estigma Social
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