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1.
Recurso na Internet em Inglês, Português | LIS - Localizador de Informação em Saúde | ID: lis-47749

RESUMO

Relatório da Relatora Especial das Nações Unidas, Alice Cruz, para a Eliminação da Discriminação contra as Pessoas Afetadas pela Hanseníase e seus Familiares. Brasília, 14 Maio de 2019. Disponível nos idiomas inglês e português.


Assuntos
Hanseníase , Direitos Humanos , Nações Unidas , Equidade em Saúde , Políticas Públicas não Discriminatórias
2.
Rev Peru Med Exp Salud Publica ; 37(1): 25-31, 2020.
Artigo em Espanhol, Inglês | MEDLINE | ID: mdl-32520188

RESUMO

OBJECTIVES: In Peru, despite the small number of cases, there is evidence of late diagnosis and hidden prevalence of leprosy. In this context the objective of the study was to know the interpretation systems on leprosy, itineraries and therapeutic repertoires of patients diagnosed with leprosy who are in treatment or who have finished treatment. MATERIALS AND METHODS: A qualitative study was carried out, applying se mi-structured interviews to patients diagnosed with leprosy from the Loreto and Ucayali regions. RESULTS: 30 patients were interviewed. Most did not know the mechanism of leprosy transmission. In relation to therapeutic itineraries, patients generally went to health facilities on the recommendation of third parties who knew the disease. In some cases, health personnel made a bad diagnosis. The importance of the treatment indicated by the "Ministerio de Salud" (Ministry of Health) is recognized; however, economic factors and the distance to health facilities negatively affect adherence to treatment. In addition, it was evidenced that stigma persists towards the disease. CONCLUSIONS: Patients recognize the importance of treatment; however, they express misconceptions about the pathogenesis of leprosy, and weaknesses in the health system are also identified. These problems would lead to delay in diagnosis and treatment. It is recommended to strengthen control strategies and decentralize the care of leprosy with the participa tion of the community, patients, health personnel and healers, considering the identified barriers and a probable underdiagnosis in women.

3.
Recurso na Internet em Português | LIS - Localizador de Informação em Saúde | ID: lis-47229

RESUMO

Produzido pela Editora Caras, com o apoio do Facebook Journalism Project e do ICFJ – Internacional Center for Journalists, o documentário ‘Hanseníase Ontem e Hoje’ traz histórias emocionantes para abordar um tema que deve ser divulgado e debatido por conta da dificuldade que ainda existe em se diagnosticar a doença precocemente no Brasil e no mundo.


Assuntos
Hanseníase , História , Hanseníase/história , Isolamento Social , Estigma Social
4.
Rev. bioét. (Impr.) ; 28(1): 17-23, jan.-mar. 2020.
Artigo em Português | LILACS-Express | ID: biblio-1092422

RESUMO

Resumo Este artigo baseia-se no artigo 11 da Declaração Universal sobre Bioética e Direitos Humanos , que trata do princípio de não discriminação e não estigmatização. O texto discorre sobre os conceitos de discriminação, estigma e violência estrutural, pensando-os no caso específico da hanseníase, sob a perspectiva da bioética e dos direitos humanos. A pesquisa considera ainda o fato de que o Brasil é o segundo país mais afetado pela doença. Como conclusão, destaca-se a importância da referida declaração como instrumento teórico-prático para enfrentar a exclusão social de pessoas nessa situação.


Abstract This article is based on Article 11 of the Universal Declaration on Bioethics and Human Rights, which addresses the principle of non-discrimination and non-stigmatization. The paper discusses the concepts of discrimination, stigma and structural violence, analyzing the specific case of leprosy from the viewpoint of bioethics and human rights. The research also considers the fact that Brazil is the second country most affected by the disease. The conclusion stresses the importance of this declaration as a theoretical and practical instrument to address the social exclusion of people in this situation.


Resumen Este artículo se basa en el artículo 11 de la Declaración Universal sobre la Bioética y los Derechos Humanos , que trata del principio de la no discriminación y no estigmatización. El texto analiza los conceptos de discriminación, estigma y violencia estructural, teniéndolos en cuenta por el caso específico de la lepra, bajo la perspectiva de la bioética y los derechos humanos. La investigación también considera el hecho de que Brasil es el segundo país más afectado por la enfermedad. Como conclusión, se destaca la importancia de esta declaración como instrumento teórico-práctico para abordar la exclusión social de las personas en esta situación.

5.
Lancet Infect Dis ; 20(4): e75-e78, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-32135079

RESUMO

Leprosy is endemic in more than 100 countries worldwide, with over 200 000 new diagnoses each year and more than 4 million people living with some form of impairment related to leprosy. The term leprosy, as used in the Bible, designated a multitude of diseases with skin manifestations. Biblical leprosy carried huge stigma and was considered synonymous with impurity and divine punishment. Global actions to eliminate leprosy have been implemented but have yet to succeed, with stigmatisation and discrimination against people affected by the disease being recognised as two of the biggest obstacles. In Brazil, leprosy was officially renamed hanseníase (Hansen's disease) in 1975, and the Brazilian experience of renaming leprosy during the past four decades has given clear signs of the benefit of this measure in fighting stigma and discrimination. More recent actions by WHO and many years of advocacy by patient organisations have followed, but concrete and effective measures to dignify language and terminology need to be implemented as soon as possible.


Assuntos
Hanseníase/classificação , Discriminação Social , Estigma Social , Terminologia como Assunto , Brasil , Saúde Global , Humanos
6.
Rev. peru. med. exp. salud publica ; 37(1): 25-31, ene.-mar. 2020. tab
Artigo em Espanhol | LILACS-Express | ID: biblio-1101802

RESUMO

RESUMEN Objetivos: En Perú, a pesar del escaso número de casos, existe evidencia de un diagnóstico tardío y prevalencia oculta de la lepra. En este contexto el objetivo del estudio fue conocer los sistemas de inter pretación sobre la lepra, itinerarios y repertorios terapéuticos de pacientes con diagnóstico de lepra que se encuentren en tratamiento o con tratamiento culminado. Materiales y métodos: Se realizó un estudio cualitativo, aplicando entrevistas semiestructuradas a pacientes con diagnóstico de lepra de las regiones de Loreto y Ucayali. Resultados: Se entrevistaron a 30 pacientes. La mayoría no conocía el mecanismo de transmisión de la lepra. En relación con los itinerarios terapéuticos, los pacientes generalmente acudie ron a los establecimientos de salud por recomendación de terceros que conocían la enfermedad. En al gunos casos, el personal de salud realizó un mal diagnóstico. Se reconoce la importancia del tratamiento indicado por el Ministerio de Salud; sin embargo, factores económicos y la distancia a los establecimien tos de salud afectan de forma negativa la adherencia al tratamiento. Además, se evidenció que persiste el estigma de la enfermedad. Conclusiones: Los pacientes reconocen la importancia del tratamiento, sin embargo, manifiestan ideas equivocadas sobre la patogenia de la lepra, además se identifican debilidades en el sistema de salud. Estos problemas conllevarían al retraso en el diagnóstico y tratamiento. Se reco mienda fortalecer las estrategias de control y descentralizar la atención de la lepra con la participación de la comunidad, pacientes, personal de salud y curanderos, considerando las barreras identificadas y un probable infradiagnóstico en la mujer.


ABSTRACT Objectives: In Peru, despite the small number of cases, there is evidence of late diagnosis and hidden prevalence of leprosy. In this context the objective of the study was to know the interpretation systems on leprosy, itineraries and therapeutic repertoires of patients diagnosed with leprosy who are in treatment or who have finished treatment. Materials and methods: A qualitative study was carried out, applying se mi-structured interviews to patients diagnosed with leprosy from the Loreto and Ucayali regions. Results: 30 patients were interviewed. Most did not know the mechanism of leprosy transmission. In relation to therapeutic itineraries, patients generally went to health facilities on the recommendation of third parties who knew the disease. In some cases, health personnel made a bad diagnosis. The importance of the treatment indicated by the "Ministerio de Salud" (Ministry of Health) is recognized; however, economic factors and the distance to health facilities negatively affect adherence to treatment. In addition, it was evidenced that stigma persists towards the disease. Conclusions: Patients recognize the importance of treatment; however, they express misconceptions about the pathogenesis of leprosy, and weaknesses in the health system are also identified. These problems would lead to delay in diagnosis and treatment. It is recommended to strengthen control strategies and decentralize the care of leprosy with the participa tion of the community, patients, health personnel and healers, considering the identified barriers and a probable underdiagnosis in women.

7.
8.
Trans R Soc Trop Med Hyg ; 114(7): 476-482, 2020 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-32052043

RESUMO

BACKGROUND: Leprosy, cutaneous leishmaniasis (CL) and Chagas disease (CD) are neglected tropical diseases with a high psychosocial burden (PSB). These conditions are endemic in Norte de Santander and Arauca in Colombia, but data on the related PSB are scarce. Therefore, we assessed mental distress, participation restriction and stigma among CD, CL and leprosy patients. METHODS: In 2018, 305 leprosy, CD or CL patients were interviewed using a self-report questionnaire to assess mental distress, participation scale for participation restriction and explanatory model interview catalogue (EMIC) for stigma. Descriptive statistics and the significance of median score differences were compared. RESULTS: Fifty percent of CD patients and 49% of leprosy patients exhibited mental distress, percentages which were significantly higher than that of CL (26%). Twenty-seven percent of leprosy patients experienced participation restriction, which was lower for CL (6%) and CD (12%). Median EMIC scores were significantly higher for leprosy patients than for CD (27%) and CL (17%) patients. CONCLUSIONS: We found high levels of PSB among leprosy, CD and CL patients. Mental distress was highest among CD patients. Participation restriction and stigma were more prevalent in leprosy patients. Rural residence or lower educational status may impact PSB. Further investigation is needed to formulate evidence-based, holistic interventions.

9.
Glob Public Health ; 15(7): 1030-1039, 2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31971879

RESUMO

Leprosy stigma is more neglected than the disease itself since global interventions towards leprosy are focused on the medicalisation of individual-sufferers and statistical counting of documented cases and less prioritising the impact of leprosy stigma towards society. This paper examines the impact of courtesy stigma on society through comparative ethnographic method conducted in two sites in East Java Province, Indonesia. Investigation in the first site, Mandangin Island, found that the island suffers underdevelopment of public facilities such as clinics and clean water and migration and medical knowledge bottlenecks. In the second site, Sumberglagah village, leprosy patients and the community they live with are also socially separated from the locals and they are engaged in controversial businesses exploiting the public fear of leprosy. This study finds that leprosy stigma in two leprosy-impacted communities in East Java, Indonesia, does not only isolate individuals but also a whole community from a bigger society regardless of whether all of the community members have leprosy. This study also detects problems related to leprosy education within the two impacted communities. It is suggested that efforts to address the problems require holistic approaches and commitments from various actors in the area in complement to existing global health missions.

10.
Trop Med Int Health ; 25(2): 144-158, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31713954

RESUMO

OBJECTIVE: To analyse community intervention programmes for people affected by leprosy in 'global priority countries'. METHODS: Scoping review of articles in the databases PubMed, Scopus, SciELO, Lilacs and Web of Knowledge that made reference to community intervention programmes aimed at people affected by leprosy in global priority countries and which presented an evaluation of results. Analytical variables analysed were methodological characteristics of the study, type of intervention classified according to the Community-Based Rehabilitation Matrix, indicators and results of the evaluation, and the degree of participation of the community, which was graphically represented as a spidergram. RESULTS: Thirty articles met the inclusion criteria. They were mostly related to the health component of the RBC matrix and aimed at the adult population. All evaluated the indicators used positively. The degree of participation generally ranged between mobilisation and collaboration. CONCLUSION: Community intervention programmes for people affected by leprosy have a positive effect on health. There are attempts to include affected people and the community in implementing these programmes, but it is not possible to establish a direct relationship with effects of their participation on health due to the study designs used. Future research using more robust methods that include leprosy patients are necessary to evaluate the effectiveness of community participation.

12.
Clin Dermatol ; 37(3): 175-181, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31178100

RESUMO

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.


Assuntos
Ceratodermia Palmar e Plantar , Estereotipagem , Conscientização , Croácia , Ética , História do Século XVIII , História do Século XIX , História do Século XX , História Medieval , Humanos , Ceratodermia Palmar e Plantar/genética , Ceratodermia Palmar e Plantar/história , Ceratodermia Palmar e Plantar/patologia , Ceratodermia Palmar e Plantar/psicologia , Hanseníase , Qualidade de Vida , Distância Social , Isolamento Social , Rede Social , Percepção Social , Populações Vulneráveis
14.
BMJ Glob Health ; 4(2): e001250, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30997168

RESUMO

Introduction: Renewed interest in health-related stigma has invigorated calls to understand factors and processes underlying stigma. However, few empirical studies explore the influences of structural discrimination and moral status on leprosy-related stigma. We investigated how sociocultural context and organisational policies and practices influenced the connotations of leprosy, sources of stigma and the changing social responses to leprosy in Western Nigeria. Methodology: Ethnographic research conducted between 2008 and 2012 combined documents review with life history interviews of 21 individuals affected by leprosy and semistructured interviews with 26 community members in Western Nigeria. Interviews were audiotaped, transcribed verbatim and coded. Theoretical frameworks used to deepen social understandings of leprosy and responses to stigma included Link's and Phelan's conceptualisation of stigma and the concepts of structural discrimination and moral status. Results: Findings showed that connotations of leprosy in Yorùbá culture included the following: (i) perception of leprosy as the most shameful and detested condition and (ii) symbolic association with filth and immoral behaviour that is dishonouring to Yorùbá identity. Secondary analysis of archival materials revealed four sources of stigma: cultural beliefs about leprosy, health promotion messages embedded in primary school books, religious teachings about leprosy and campaigns conducted by the leprosy service in 1950s. Contrary to the portrayal of Yorùbá attitudes to leprosy as entirely negative, we identified that people affected by leprosy were creating new life courses to counter existing cultural accounts of marginalisation. Emerging narratives of inclusion outlined five facilitators of acceptance namely, antileprosy treatment, good moral character, supportive family networks, livelihoods, and contribution to community survival. Conclusion: Gaps highlighted by this study suggest that the global target of zero stigma and discrimination of leprosy will remain unattainable without better understanding of cultural significance(s) of leprosy and the local sources and underlying drivers of stigma that are crucial for developing context-specific stigma reduction interventions.

15.
Recurso na Internet em Português | LIS - Localizador de Informação em Saúde | ID: lis-46381

RESUMO

“Hanseníase. Identificou. Tratou. Curou”. Lançamento de uma nova campanha de conscientização do Ministério da Saúde do Brasil sobre a doença.


Assuntos
Hanseníase/prevenção & controle , Hanseníase/complicações
16.
Lancet ; 393(10170): 378, 2019 02 02.
Artigo em Inglês | MEDLINE | ID: mdl-30722951
17.
Rev. enferm. UFPE on line ; 13(2): 292-297, fev. 2019.
Artigo em Português | BDENF - Enfermagem | ID: biblio-1009887

RESUMO

Objetivo: analisar a percepção de adolescentes sobre a hanseníase. Método: trata-se de uma pesquisa qualitativa, descritiva, constituída por 30 adolescentes de uma escola pública, realizada no período de agosto a novembro de 2016. Coletaram-se os dados a partir do jogo dinâmica da face, cujas falas foram transcritas e analisadas conforme a técnica de Análise de Conteúdo na modalidade Análise Temática. Resultados: verificase, nas falas dos adolescentes, pouco conhecimento sobre a hanseníase, sem discernimento sobre os aspectos gerais da doença, associando-a a outras enfermidades. Percebe-se que eles têm a família e a televisão como principais fontes de informação sobre a doença, e o desconhecimento sobre a hanseníase gera uma atmosfera de medo, dúvida, angústia e preocupação, principalmente, por pensarem que a doença não tem cura, causa isolamento social, e pode ser transmitida a seus familiares. Conclusão: conclui-se que os adolescentes percebem a hanseníase como uma doença grave, incurável e causadora de medo, vergonha e isolamento social.(AU)


Objective: to analyze the adolescents' perception about leprosy. Method: this is a qualitative, descriptive study of 30 adolescents from a public school, carried out from August to November 2016. Data was collected from the dynamic face game; the speeches were transcribed and analyzed according to the Content Analysis technique in the Thematic Analysis modality. Results: there is little knowledge about leprosy in adolescents, without discernment about the general aspects of the disease, associating it with other diseases. It is perceived that they have family and television as the main sources of information about the disease, and the lack of knowledge about leprosy generates an atmosphere of fear, doubt, anguish and concern, mainly because they think that the disease has no cure, causes social isolation, and can be transmitted to their family members. Conclusion: it is concluded that adolescents perceive leprosy as a serious, incurable disease that causes fear, shame and social isolation.(AU)


Objetivo: analizar la percepción de los adolescentes sobre la lepra. Método: se trata de una investigación cualitativa, descriptiva, constituida por 30 adolescentes de una escuela pública, realizada en el período de agosto a noviembre de 2016. Se recogen los datos a partir del juego dinámico de la cara, cuyas palabras fueron transcritas y analizadas de acuerdo con la técnica de Análisis de Contenido en la modalidad Análisis Temático. Resultados: se verifica, en las conversaciones de los adolescentes, poco conocimiento sobre la lepra, sin discernimiento sobre los aspectos generales de la enfermedad, asociándola a otras enfermedades. Se percibe que tienen la familia y la televisión como principales fuentes de información sobre la enfermedad, y el desconocimiento sobre la lepra genera una atmósfera de miedo, duda, angustia y preocupación, principalmente, por pensar que la enfermedad no tiene cura, causa aislamiento social, y puede ser transmitida a sus familiares. Conclusión: se concluye que los adolescentes perciben la lepra como una enfermedad grave, incurable y causante de miedo, vergüenza y aislamiento social.(AU)


Assuntos
Humanos , Masculino , Feminino , Criança , Adolescente , Percepção , Jogos e Brinquedos , Serviços de Saúde Escolar , Conhecimentos, Atitudes e Prática em Saúde , Educação em Saúde , Adolescente , Hanseníase , Epidemiologia Descritiva , Pesquisa Qualitativa
18.
Artigo em Inglês | MEDLINE | ID: mdl-30691157

RESUMO

The consequences of leprosy go beyond the physical, social and psychological, as leprosy can drive persons affected and their families into poverty, stigmatization and disability. This paper describes the impact of a socio-economic development (SED) intervention that uses a twin-track approach (two micro-credit models) to reduce leprosy-related stigma in Cirebon District, Indonesia. A randomized-controlled mixed-methods study design was used to test the effectiveness of the SED intervention. Three scales were used to measure stigma and participation restrictions among 30 SED clients and 57 controls, 20 in-depth interviews with SED clients and seven Focus Group Discussions (FGDs) with key persons were held and 65 profiles of the clients were written up and analysed. The qualitative data shows the socio-economic status of 44 out of 65 SED clients (67%) improved. The median family income increased by 25%, more clients reported higher self-esteem, better interaction with neighbours and less stigma than before, although disclosure concerns remained an issue. The scales indicate a positive effect of the intervention on reducing stigma (e.g., Stigma Assessment and Reduction of Impact (SARI) stigma scale mean difference total score of pre and post assessment for SED clients versus the control group was 8.5 versus 5.6). A twin track socio-economic intervention, if embedded and integrated, can increase participation, and be constructive in reducing leprosy-related stigma.


Assuntos
Desenvolvimento Econômico , Hanseníase/psicologia , Estigma Social , Adolescente , Adulto , Idoso , Pessoas com Deficiência/psicologia , Revelação , Feminino , Grupos Focais , Humanos , Indonésia , Masculino , Pessoa de Meia-Idade , Pobreza , Classe Social , Adulto Jovem
19.
PLoS Negl Trop Dis ; 13(1): e0007075, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-30633780

RESUMO

BACKGROUND: Though Nepal declared leprosy elimination in 2010, its burden is constantly rising in Terai communities for the past 2 years with 3000 new leprosy cases being diagnosed annually. Community's perception is important for prevention and control of leprosy and enhancing quality of life of leprosy patients. Poor knowledge, unfavorable attitude and stigma create a hindrance to leprosy control. The main objective of this study was to assess the knowledge, attitude and stigma of leprosy amongst the community members living in Dhanusha and Parsa districts of Southern Central Nepal. METHODS: A total of 423 individuals were interviewed using a structured questionnaire in Dhanusha and Parsa districts. Data was analyzed using both descriptive (frequency, percentage, median) and statistical inferences (Chi-square test, Kruskal Wallis H test, Mann Whitney U test, binary logistic regression) using SPSSvs20. RESULTS: All respondents had heard about leprosy. Source of information on leprosy was mainly found to be health workers/hospitals (33.1%). Only 62.6% reported bacteria being its cause followed by other myths such as bad blood/curse/heredity/bad deeds (36%). Only 43.8% responded that leprosy is transmitted by prolonged close contact with leprosy patients and 25.7% reported religious rituals as the treatment. Only 42.1% had good knowledge and 40.9% had favorable attitude. Good knowledge of leprosy was highly associated with favorable attitude towards leprosy (P<0.001). The outcome variables- knowledge, attitude and EMIC score were found to have highly significant association with age, sex, ethnicity, religion, education and occupation of the respondents (P<0.001). Having knowledge on leprosy transmission was positively associated with favorable attitude towards leprosy (P<0.001). CONCLUSIONS: Strategizing the awareness programmes according to socio-demographic characteristics for enhancing the knowledge regarding leprosy cause, symptoms, transmission, prevention and treatment, can foster the positive community attitude towards leprosy affected persons. Enhancing positive attitude towards leprosy affected persons can reduce the community stigma, thus may increase their participation in the community. Positive attitude may further increase their early health seeking behaviour including their quality of life.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Hanseníase/psicologia , Estigma Social , Adolescente , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Nepal , Inquéritos e Questionários , Adulto Jovem
20.
Soc Work Health Care ; 58(2): 151-165, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30321131

RESUMO

Stigmatization of persons cured of leprosy (PCLs) is a long standing social problem especially in the developing world, which often leads to their isolation from mainstream society. This study presents the voices of PCLs in the Cured Lepers' Village in Ho, a community located in Southern Ghana. The study collected data through in-depth interviews and focus group discussions with 20 participants. Findings indicate that PCLs continue to live a significant number of years in the Cured Lepers' Village after they are cured of leprosy. This situation is due to several factors such as stigma (including self-stigma), isolation, and neglect. Fear of the disease and compliance with religious and sociocultural beliefs, and regulations regarding leprosy were identified as reasons for the isolation of people affected by the disease. The study recommends a comprehensive public education program on leprosy targeting community leaders to help re-integrate PCLs into their communities and calls for social workers to be part of this process.


Assuntos
Hanseníase/psicologia , Estigma Social , Idoso , Idoso de 80 Anos ou mais , Características Culturais , Feminino , Gana , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
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