Little Doctors: Agents of change in Indian rural communities.

The child-to-child approach to health advocacy is one that draws on the strengths and agency of children to make a positive impact within their communities. The approach has been popularly used for health education in low- and middle-income countries. This article describes the 'Little Doctors' program that implemented the child-to-child approach in the towns of KC Patty and Oddanchatram, located in remote hilly regions of Tamil Nadu, India starting in 1986 to train middle- and high school children to respond to diseases prevalent in their communities along with practices for preventative measures. The program involved sessions that used a combination of creative instructional methods to engage students and provided take-home messages for them to act on with their families and community. The program was successful in creating a creative learning environment for children, offering a shift from the traditional methods of classroom instruction. Students who successfully completed the program were awarded certificates as 'Little Doctors' in their communities. Although the program did not conduct formal evaluations of the program effectiveness, students reported successfully recalling complex topics such as early signs of diseases like tuberculosis and leprosy that were prevalent in the community during the time. The program experienced several challenges and had to be discontinued despite its continued benefits to the communities.

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

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

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

[Programmatic vulnerability in leprosy control: gender-related patterns in Bahia State, Brazil]. / Vulnerabilidade programática no controle da hanseníase: padrões na perspectiva de gênero no Estado da Bahia, Brasil.

The aim of this study was to analyze operational indicators and time trends in leprosy control from a gender perspective in Bahia State, Brazil, from 2001 to 2014. This was a time series study based on epidemiological data on leprosy from the Brazilian National System of Diseases of Notification, using joinpoint Poisson and polynomial regression. Of the 40,054 new cases of leprosy, 47.1% of the recorded contacts were not examined, with a significant upward trend, especially in women (average annual percentage change - AAPC = 5.6; 95%CI: 3.5; 7.7) when compared to men (AAPC = 3.0; 95%CI: 0.5; 5.6). The proportion of cure in the 2003-2014 cohort was 85%, with a downward trend, especially in men (AAPC = -0.5; 95%CI: -0.9; 0.0), compared to women (AAPC = -0.4; 95%CI: -0.7; -0.1). Treatment dropout rate was 5.5%, with a more significant downward trend in women (AAPC = -4.9; 95%CI: -8.7; -1.1) than in men (AAPC = -2.7; 95%CI: -4.4; -1.0). Relapse was recorded in 3.8% of all the entries during the same period; women showed a significant downward trend (AAPC = -2.2; 95%CI: -3.3; -1.0) and men a significant upward trend (AAPC = 4.9; 95%CI: 2.9; 6.8). Polynomial regression analysis was consistent with joinpoint regression. Leprosy in Bahia State shows operational indicators with significant magnitude and time trends, especially in the male population. Health services' insufficient performance in conducting contact surveillance and longitudinal care reveal various dimensions of vulnerability.

O objetivo deste estudo foi analisar indicadores operacionais de controle da hanseníase e sua tendência temporal, na perspectiva de gênero, no Estado da Bahia, Brasil, de 2001 a 2014. Trata-se de estudo de série temporal baseado em dados epidemiológicos da hanseníase no Sistema de Informação de Agravos de Notificação, com análise de regressão de Poisson por joinpoints e de regressão polinomial. Dos 40.054 casos novos de hanseníase analisados, 47,1% dos contatos registrados não foram examinados, mas com tendência significativa de aumento, de forma mais acentuada entre as mulheres (variação percentual anual média - AAPC = 5,6; IC95%: 3,5; 7,7) em comparação aos homens (AAPC = 3,0; IC95%: 0,5; 5,6). A proporção de cura na coorte 2003-2014 foi de 85%, com tendência de redução mais acentuada nos homens (AAPC = -0,5; IC95%: -0,9; 0,0), comparados às mulheres (AAPC = -0,4; IC95% -0,7; -0,1). A proporção de casos em abandono de tratamento no período foi de 5,5%, com tendência de redução mais significativa entre mulheres (AAPC = -4,9; IC95%: -8,7; -1,1) do que em homens (AAPC = -2,7; IC95%: -4,4; -1,0). Recidiva foi verificada em 3,8% de todas as entradas do período; as mulheres apresentaram tendência de redução significativa (AAPC = -2,2; IC95%: -3,3; -1,0) e os homens, de crescimento significativo (AAPC = 4,9; IC95%: 2,9; 6,8). A análise por regressão polinomial foi consistente com a análise de joinpoints. A hanseníase no Estado da Bahia apresenta indicadores operacionais com magnitude e tendência temporal significativas, em especial entre a população masculina. O desempenho insuficiente dos serviços de saúde em realizar a vigilância de contatos e a longitudinalidade do cuidado revelam diferentes dimensões de vulnerabilidade.

El objetivo de este estudio fue analizar indicadores operacionales de control de la lepra y su tendencia temporal, desde la perspectiva de género, en el estado de Bahía, Brasil, de 2001 a 2014. Se trata de un estudio de serie temporal, basado en datos epidemiológicos de la lepra en el Sistema Nacional de Enfermedades de Notificación Obligatoria, con análisis de regresión de Poisson por joinpoints y de regresión polinomial. De los 40.054 casos nuevos de hanseniasis analizados, un 47,1% de los contactos registrados no fueron examinados, pero con una tendencia significativa de aumento, de forma más acentuada entre las mujeres (AAPC = 5,6; IC95%: 3,5; 7,7), en comparación a los hombres (AAPC = 3,0; IC95%: 0,5; 5,6). La proporción de cura en la cohorte 2003-2014 fue de un 85%, con una tendencia de reducción más acentuada en los hombres (AAPC = -0,5; IC95%: -0,9; 0,0), comparados con las mujeres (AAPC = -0,4; IC95%: -0,7; -0,1). La proporción de casos en abandono de tratamiento durante el período fue de un 5,5%, con tendencia de reducción más significativa entre mujeres (AAPC = -4,9; IC95%: -8,7; -1,1) que en hombres (AAPC = -2,7; IC95%: -4,4; -1,0). La recidiva se verificó en un 3,8% de todas las entradas del período; las mujeres presentaron una tendencia de reducción significativa (AAPC = -2,2; IC95%: -3,3; -1,0) y los hombres, de crecimiento significativo (AAPC = 4,9; IC95%: 2,9; 6,8). El análisis por regresión polinomial fue consistente con el análisis de joinpoints. La hanseniasis en el estado de Bahía presenta indicadores operacionales con magnitud y tendencia temporal significativas, en especial entre la población masculina. El desempeño insuficiente de los servicios de salud al realizar la vigilancia de contactos y la longitudinalidad del cuidado revelan diferentes dimensiones de vulnerabilidad.

Courtesy stigma: A concealed consternation among caregivers of people affected by leprosy.

This study explored experiences of courtesy stigma among caregivers of people affected by leprosy. Using a qualitative research approach, twenty participants were purposively selected and in-depth interviews conducted. The interviews were audio-recorded, transcribed, and analyzed to identify emerging themes that addressed objectives of the study. The findings indicated that caregivers of people affected by leprosy experienced courtesy stigma. Evidence showed that fear of contagion underpinned caregivers' experiences, especially in employment and romantic relationships. In addition, participants adopted different strategies (disregarding, concealment, education, faith-based trust) to handle courtesy stigma. The findings demonstrate that psychosocial support and financial assistance to caregivers are necessary considerations for attainment of effective care for people affected by leprosy.

Vulnerabilidade programática no controle da hanseníase: padrões na perspectiva de gênero no Estado da Bahia, Brasil / Programmatic vulnerability in leprosy control: gender-related patterns in Bahia State, Brazil / Vulnerabilidad programática en el control de la lepra: padrones desde la perspectiva de género en el Estado de Bahía, Brasil

O objetivo deste estudo foi analisar indicadores operacionais de controle da hanseníase e sua tendência temporal, na perspectiva de gênero, no Estado da Bahia, Brasil, de 2001 a 2014. Trata-se de estudo de série temporal baseado em dados epidemiológicos da hanseníase no Sistema de Informação de Agravos de Notificação, com análise de regressão de Poisson por joinpoints e de regressão polinomial. Dos 40.054 casos novos de hanseníase analisados, 47,1% dos contatos registrados não foram examinados, mas com tendência significativa de aumento, de forma mais acentuada entre as mulheres (variação percentual anual média - AAPC = 5,6; IC95%: 3,5; 7,7) em comparação aos homens (AAPC = 3,0; IC95%: 0,5; 5,6). A proporção de cura na coorte 2003-2014 foi de 85%, com tendência de redução mais acentuada nos homens (AAPC = -0,5; IC95%: -0,9; 0,0), comparados às mulheres (AAPC = -0,4; IC95% -0,7; -0,1). A proporção de casos em abandono de tratamento no período foi de 5,5%, com tendência de redução mais significativa entre mulheres (AAPC = -4,9; IC95%: -8,7; -1,1) do que em homens (AAPC = -2,7; IC95%: -4,4; -1,0). Recidiva foi verificada em 3,8% de todas as entradas do período; as mulheres apresentaram tendência de redução significativa (AAPC = -2,2; IC95%: -3,3; -1,0) e os homens, de crescimento significativo (AAPC = 4,9; IC95%: 2,9; 6,8). A análise por regressão polinomial foi consistente com a análise de joinpoints. A hanseníase no Estado da Bahia apresenta indicadores operacionais com magnitude e tendência temporal significativas, em especial entre a população masculina. O desempenho insuficiente dos serviços de saúde em realizar a vigilância de contatos e a longitudinalidade do cuidado revelam diferentes dimensões de vulnerabilidade.

The aim of this study was to analyze operational indicators and time trends in leprosy control from a gender perspective in Bahia State, Brazil, from 2001 to 2014. This was a time series study based on epidemiological data on leprosy from the Brazilian National System of Diseases of Notification, using joinpoint Poisson and polynomial regression. Of the 40,054 new cases of leprosy, 47.1% of the recorded contacts were not examined, with a significant upward trend, especially in women (average annual percentage change - AAPC = 5.6; 95%CI: 3.5; 7.7) when compared to men (AAPC = 3.0; 95%CI: 0.5; 5.6). The proportion of cure in the 2003-2014 cohort was 85%, with a downward trend, especially in men (AAPC = -0.5; 95%CI: -0.9; 0.0), compared to women (AAPC = -0.4; 95%CI: -0.7; -0.1). Treatment dropout rate was 5.5%, with a more significant downward trend in women (AAPC = -4.9; 95%CI: -8.7; -1.1) than in men (AAPC = -2.7; 95%CI: -4.4; -1.0). Relapse was recorded in 3.8% of all the entries during the same period; women showed a significant downward trend (AAPC = -2.2; 95%CI: -3.3; -1.0) and men a significant upward trend (AAPC = 4.9; 95%CI: 2.9; 6.8). Polynomial regression analysis was consistent with joinpoint regression. Leprosy in Bahia State shows operational indicators with significant magnitude and time trends, especially in the male population. Health services' insufficient performance in conducting contact surveillance and longitudinal care reveal various dimensions of vulnerability.

El objetivo de este estudio fue analizar indicadores operacionales de control de la lepra y su tendencia temporal, desde la perspectiva de género, en el estado de Bahía, Brasil, de 2001 a 2014. Se trata de un estudio de serie temporal, basado en datos epidemiológicos de la lepra en el Sistema Nacional de Enfermedades de Notificación Obligatoria, con análisis de regresión de Poisson por joinpoints y de regresión polinomial. De los 40.054 casos nuevos de hanseniasis analizados, un 47,1% de los contactos registrados no fueron examinados, pero con una tendencia significativa de aumento, de forma más acentuada entre las mujeres (AAPC = 5,6; IC95%: 3,5; 7,7), en comparación a los hombres (AAPC = 3,0; IC95%: 0,5; 5,6). La proporción de cura en la cohorte 2003-2014 fue de un 85%, con una tendencia de reducción más acentuada en los hombres (AAPC = -0,5; IC95%: -0,9; 0,0), comparados con las mujeres (AAPC = -0,4; IC95%: -0,7; -0,1). La proporción de casos en abandono de tratamiento durante el período fue de un 5,5%, con tendencia de reducción más significativa entre mujeres (AAPC = -4,9; IC95%: -8,7; -1,1) que en hombres (AAPC = -2,7; IC95%: -4,4; -1,0). La recidiva se verificó en un 3,8% de todas las entradas del período; las mujeres presentaron una tendencia de reducción significativa (AAPC = -2,2; IC95%: -3,3; -1,0) y los hombres, de crecimiento significativo (AAPC = 4,9; IC95%: 2,9; 6,8). El análisis por regresión polinomial fue consistente con el análisis de joinpoints. La hanseniasis en el estado de Bahía presenta indicadores operacionales con magnitud y tendencia temporal significativas, en especial entre la población masculina. El desempeño insuficiente de los servicios de salud al realizar la vigilancia de contactos y la longitudinalidad del cuidado revelan diferentes dimensiones de vulnerabilidad.

Vivência e sentimentos de mulheres portadoras de hanseníase / Experience and feelings of women with leprosy

Objetivo: conhecer a vivência e os sentimentos de mulheres com hanseníase. Método: estudo qualitativo, descritivo e exploratório, realizado com 15 mulheres. Os dados foram produzidos por meio de entrevista semiestruturada, com perguntas abertas e fechadas, e um roteiro com questões norteadoras. Os dados foram analisados pela técnica de Análise de Conteúdo. Resultados: cinco categorias foram definidas após o processo de análise: >, >, >, >, >. Conclusão: os resultados mostraram que a hanseníase deixa marcas profundas na vida das mulheres como medo, insegurança, exclusão social, necessitando, portanto, da assistência humanizada, por parte dos profissionais de saúde, e do apoio das pessoas do seu convívio, para o enfrentamento da doença.

Factors preventing early case detection for women affected by leprosy: a review of the literature.

BACKGROUND: Although leprosy can affect both sexes equally, it is globally reported that men are affected, or simply report, more often than females at the average ratio of 2:1. If cases are simply not being reported, women may be suffering in silence more often than men, and, therefore, understanding the social reasons for this in a number of countries could support the prevention of long-term disabilities caused as a result of leprosy. OBJECTIVES: The objective of this review is to recognise the current academic literature surrounding the potential factors for late diagnosis of women affected by leprosy, giving possible explanations for the 2:1 gender disparity observed in case detection globally. It is hoped that health practitioners will become more equipped to recognise these barriers and ensure they are doing whatever possible to encourage women to report the early symptoms of leprosy. METHODS: The review used a systematic search process in order to identify gender-related publications using robust research, useful for gleaning a cross-cultural perception of issues women may confront on the prospect of a diagnosis of leprosy. RESULTS: Identifying 12 publications from just five countries, the review found there to be four overarching areas which may be considered barriers more often faced by women: societal stigma; women's dependence and low status; self-stigmatising attitudes; and the gender insensitivity of leprosy services. CONCLUSION: Stigma surrounding leprosy experienced from these four overarching areas can all be attributed to the later diagnosis of women affected by leprosy, in relation to their male counterparts. The need for future research surrounding the specific experience of women affected by leprosy is pressing.

The body mechanical: Building a caring community, crafting a functioning body.

When Hansen's disease became treatable in Taiwan in the mid-20th century, a group of Hansen's disease patients lost their sick role despite still having lingering symptoms that continued to evolve. While sociologists have explored in-depth situations in which the social role of the sick is ambiguous, few studies have investigated body experiences under liminality that requires sick people to find a new sick role. Living with lingering symptoms in a post-Hansen's disease world, the Hansen's disease patients I have studied face the conundrum of having to find an alternative sick role. Ethnographic fieldwork demonstrates how patients develop a specific set of body techniques that shape and are shaped by their membership in a patient community. Exploring the reinforcing projects of re-embodiment and sociality around Hansen's disease, I argue that patients are able both to legitimate each other's feelings of sickness and to use those feelings to manage their illness and, as such, to collectively acquire an alternative sick role. Adding to existing discussions of active patients, this article identifies the body mechanical as a way of practicing active patienthood organized around fixing, trials, mending and functionality.

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

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

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

Relações sociais e dimensões íntimas de idosos afetados por hanseníase / Social relationships and intimate imensions of elderly individuals affected by hansen's disease / Relaciones sociales y dimensiones íntimas de ancianos atingidos por enfermedad de hansen

Objetivou-se avaliar relações sociais e íntimas de pessoas idosas com hanseníase. Abordagem quantitativa, com 60 idosos em dois Programas de Controle da Hanseníase, em uma capital do nordeste brasileiro, utilizando o Domínio das Relações Sociais do World Health Organization Quality of Life ­ bref e a faceta Intimidade do World Health Organization Quality of Life ­ older adults, com análise estatística descritiva. A coleta de dados ocorreu entre dezembro de 2012 e junho de 2013. No Domínio das Relações Sociais, a satisfação foi de 85% nas relações pessoais, 78,3% no suporte social e 60% em atividade sexual. Na Faceta Intimidade, os idosos apresentaram menor satisfação. As Relações Sociais dos idosos com hanseníase apresentou alto escore devido à rede de apoio social, trazendo expressiva satisfação e se refletindo na sua qualidade de vida. Conclui-se sobre a importância da Enfermagem articular estratégias de práticas educativas e de cuidados à pessoa idosa e com hanseníase (AU).

The aim of this study was to assess social and intimate relationships of elderly individuals with Hansen's disease. This study has a quantitative approach, with 60 elderly individuals from two Hansen's Disease Control Programs in the capital city of a Brazilian Northeastern state, using the Social Relationships domain of the World Health Organization Quality of Life ­ bref and the Intimacy facet of the World Health Organization Quality of Life ­ older adults, with descriptive statistical analysis. Data were collected between December 2012 and June 2013. In the Social Relationships domain, satisfaction was found at 85% in personal relationships, 78.3% in social support and 60% in sexual activity. The elderly individuals presented lower satisfaction in the Intimacy facet. The Social Relationships of elderly individuals with Hansen's disease presented a high score due to the social support network, which presented significant satisfaction and reflected on quality of life. In conclusion, it is important that nursing coordinates strategies for educational and care practices for elderly individuals affected by Hansen's disease (AU).

El objetivo fue evaluar relaciones sociales así como íntimas de personas ancianas con enfermedad de Hansen. Abordaje cuantitativo, con 60 ancianos en dos Programas de Control de la enfermedad de Hansen, en una capital del nordeste brasileño, utilizando el Dominio de las Relaciones Sociales del World Health Organization Quality of Life ­ bref y la categoría Intimidad del World Health Organization Quality of Life ­ older adults, con análisis estadístico descriptivo. Los datos fueron obtenidos entre diciembre de 2012 y junio de 2013. En el Dominio de las Relaciones Sociales, la satisfacción fue de 85% en las relaciones personales, 78,3% en el apoyo social y 60% en actividad sexual. En la categoría Intimidad, los ancianos presentaron menor satisfacción. Las Relaciones Sociales de los ancianos con enfermedad de Hansen presentó alto escore a causa de la red de apoyo social, trayendo expresiva satisfacción y reflejando en su cualidad de vida. Se concluye que es muy importante que la Enfermería articule estrategias de prácticas educativas y de cuidados al anciano con enfermedad de Hansen (AU).

Socio-Economic and Health Status of Leprosy Affected Person: A Study in Jharkhand.

The study has been conducted in the Potka Block of East Singhbhum district of the state of Jharkhand. The district is mainly dominated by indigenous tribes, such as, Santhal, Munda, Ho, Bhumiz, Kharia, and Sabar. The unit of analysis of the study was an individual. The objectives were to: a) Understand the socio-economic and health status of LAP, b) Know the health seeking behavior and problems faced by the LAP, c) Assess the utilization of the programs related to Leprosy eradication in the study area and d), Suggest various measures for improving the socio-economic and health status of LAP. Fifty Leprosy affected persons (LAP) from the Potka block; comprising of 20% of LAP of that area have been selected as the study sample by using the method of Multi-Stage Random Sampling, with equal representation of men and women. The LAPs included leprosy patients, leprosy treated people and their family members. 39/50 (78%) of the respondents are illiterates and only 3/11 (6%) among the literate population have crossed matriculation and above. This seems to have resulted in the respondent's low level of awareness about the disease, resulting in delayed treatment. 14/25 (56%) percent of female and 13/25 (52%) of male respondents are considered untouchable by their natal families, thus forced to stay in congested leprosy colonies resulting in other social and health related issues. It was observed that leprosy cured children,and also children of LAP are being denied admission iany school, due to the social stigma attached to it. 27/50 (54%)of leprosy patients and leprosy cured people (mostly with visible deformities) were found to practice begging as their sole means of livelihood. Many LAPs are also engaged in cultivation and small scale business particularly among the rural population. An amount of gender disparity was also observed in the employment pattern among the LAPs. Among the, respondents 15/25 (60%) of the females are beggars as compared to 12/25 (48%) of the male respondents, 5/25 (25%) of males are each engaged in cultivation and small scale businesses in comparison to 1/25 (4%) of female and 6/25 (24%) of the female respondents are unemployed as compared to 2/25 (8%) of male respondents. It was observed that only 30% of the respondents were satisfied with the government treatment, 26% partially satisfied and rest were not satisfied with the government leprosy care system. Most of them wanted to seek treatment from the private health care providers. Overall this study reflects the poor socio-economic conditions of the LAPs. Though results of this exploratory study cannot be extrapolated to country or region or state without studying the situation in detail, it highlights the need for more in-depth studies and of government intervention in the form of encouraging awareness activities in the communities, engaging NGOs im case detection and after care service provision and rehabilitation of the LAPs.

La lepra en Colombia: estigma, identidad y resistencia en los siglos XX y XXI / Leprosy in Colombia: stigma, identity and resistance in XX and XXI centuries

Este artículo analiza la historia de la lepra o enfermedad de Hansen como un concepto reelaborado a lo largo de la historia por los discursos científicos, políticos, religiosos y por los saberes populares, puesto en relación al problema de la estigmatización. Buscamos realizar un análisis desde la teoría del estigma como un proceso social, que produce el aislamiento, la exclusión, discriminación y rechazo al enfermo y su familia, deteriorando la identidad de los mismos. Encontramos y analizamos cómo se produce en la interacción social la estigmatización, y a su vez, cómo los enfermos reelaboran su identidad, generando una serie de estrategias de afrontamiento y ocultamiento del estigma, estrategias de resistencia con las que reconstruyen su tejido social. Las categorías de análisis de la información fueron percepciones y creencias sobre la enfermedad, relaciones sociales y familiares, construcción de la imagen del enfermo y las metáforas de la enfermedad, actos de discriminación y rechazo, y actos de ocultamiento y afrontamiento del estigma. En este trabajo de carácter cualitativo, analítico y diacrónico, se utilizaron metodologías de investigación cualitativa, consistentes en entrevistas, observación etnográfica, trabajos de memoria y cartografía social, y revisión y análisis de fuentes primarias y secundarias, recolectando información de Colombia, específicamente los municipios de Agua de Dios, Cundinamarca y Contratación, Santander, considerando como marco temporal los siglos XX y XXI.

This article analyzes the history of leprosy or hansens disease as a concept that has been re elaborated throughout history by popular opinion and political, religious and scientific influence, all in relation with the problem of stigmatizing. Here we seek to make an analysis of the theory of stigma as social process that produces isolation, exclusion, discrimination and rejection of the sick and his family, reducing their own identity. We find and analyze how social interaction in stigmatization works, and how those with the disease recreate their identity, generating a series of coping strategies, ways of hiding the cause of stigma, and resilience strategy with which they rebuild their social network. The information was analyzed through the categories of perceptions and believes of the disease, social and family relations, self image construction of the sick and the metaphors of the disease, acts of discrimination and rejection, acts of hiding and confronting the stigma. In this work of analytic, qualitative and diachronic characteristics, we used qualitative investigation methodologies, consisting in interviews, ethnographic observation, social cartography and memory exercises, and reviews and analysis of primary and secondary sources. Information was collected from Colombia, specifically the towns of Agua de Dios, Cundinamarca and Contratacion, Santander, taking into account the XX and XXI century as the time frame.

A comparison of stigma among patients with leprosy in rural Tanzania and urban United States: a role for public health in dermatology.

BACKGROUND: Leprosy is a chronic infection of the skin and peripheral nerves caused by the bacterium Mycobacterium leprae, which causes peripheral insensitivity and disfigurements of the skin, limbs, and digits. Social stigma is a common consequence of leprosy and may differ according to level of physical disfigurement and geographic location. The objective of this study was to assess social stigma encountered by patients with leprosy in clinical settings located in rural Tanzania and urban USA and to compare the social stigma reported in these regions. METHODS: A total of 56 respondents were recruited from one leprosy inpatient facility in Shirati, Tanzania (n = 28), and one outpatient clinic in Los Angeles, USA (n = 28). Cross-sectional data were obtained from face-to-face interviews, which were conducted with respondents at each clinic location. Measures of perceived stigma were assessed in family relationship, vocational, social interaction, and interpersonal contexts. RESULTS: Patients in Tanzania, as compared with those in the USA, reported significantly higher levels of stigma in family relationship and vocational contexts. Tanzanian patients also reported higher levels of stigma in social interaction and self-esteem contexts, but these differences were marginally significant and may reflect the small sample size. CONCLUSIONS: Leprosy-related social stigma is a major problem in regions of both developed and developing countries; however, patients with leprosy in developing countries reported higher levels of stigma in four social contexts. A public health role in dermatology is discussed as an agent of early diagnosis, control, and education in order to reduce social stigma and promote social rehabilitation.

A qualitative exploration of social contact patterns relevant to airborne infectious diseases in northwest Bangladesh.

In South Asia, the burden of infectious diseases is high. Socioeconomically and culturally-defined social interaction patterns are considered to be an important determinant in the spread of diseases that are transmitted through person-to-person contact. Understanding of the contact patterns in this region can be helpful to develop more effective control measures. Focus group discussions were used in exploring social contact patterns in northwest Bangladesh. The patterns were assessed for perceived relevance to the spread of airborne infectious diseases, with special focus on diseases, like leprosy and tuberculosis, in which the role of social determinants is well-recognized. Highly-relevant social contact patterns inside the home and the neighbourhood, across age and sex groups, were reported in all group discussions. Outside the home, women and girls reported relevant contacts limited to the close neighbourhood while men mentioned high relevant contacts beyond. This implies that, in theory, infectious diseases can easily be transmitted across age and sex groups in and around the home. Adult men might play a role in the transmission of airborne infectious diseases from outside this confined area since only this group reported highly-relevant social contacts beyond the home. This concept needs further exploration but control programmes in the South Asian region could benefit from considering differences in social contact patterns by gender for risk assessments and planning of preventive interventions.

Disability in people affected by leprosy: the role of impairment, activity, social participation, stigma and discrimination.

BACKGROUND: Leprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a mere physical dysfunction, and includes activity limitations, stigma, discrimination, and social participation restrictions. We assessed the extent of disability and its determinants among persons with leprosy-related disabilities after release from multi drug treatment. METHODS: We conducted a survey on disability among persons affected by leprosy in Indonesia, using a Rapid Disability Appraisal toolkit based on the International Classification of Functioning, Disability and Health. The toolkit included the Screening of Activity Limitation and Safety Awareness (SALSA) scale, Participation Scale, Jacoby Stigma Scale (anticipated stigma), Explanatory Model Interview Catalogue (EMIC) stigma scale and Discrimination assessment. Community members were interviewed using a community version of the stigma scale. Multivariate linear regression was done to identify factors associated with social participation. RESULTS: Overall 1,358 persons with leprosy-related disability (PLD) and 931 community members were included. Seventy-seven percent of PLD had physical impairments. Impairment status deteriorated significantly after release from treatment (from 59% to 77%). Around 60% of people reported activity limitations and participation restrictions and 36% anticipated stigma. As for participation restrictions and stigma, shame, problems related to marriage and difficulties in employment were the most frequently reported problems. Major determinants of participation were severity of impairment and level of education, activity and stigma. Reported severity of community stigma correlated with severity of participation restrictions in the same districts. DISCUSSION: The majority of respondents reported problems in all components of disability. The reported physical impairment after release from treatment justifies ongoing monitoring to facilitate early prevention. Stigma was a major determinant of social participation, and therefore disability. Stigma reduction activities and socio-economic rehabilitation are urgently needed in addition to strategies to reduce the development of further physical impairment after release from treatment.

Effectiveness of social skills training for reduction of self-perceived stigma in leprosy patients in rural India--a preliminary study.

OBJECTIVES: To assess the effectiveness of social skills training in leprosy patients to raise self-esteem and reduce self-perceived stigma. DESIGN: Five leprosy patients were given 10 day-long group-sessions of social skills training over 3 weeks. Training involved: identification of the emotions and concerns of patients when interacting socially; analysis of positive and negative social interactions and non-verbal and verbal skills training. Role-plays, videos and live models were used. Self-esteem and a reduction in self-perceived stigma were assessed qualitatively before and after training using semi-structured interviews. Assessment of change was scored under the indicators: self-perception, family, wider community and job. Patients were assessed for displaying new ways of interacting with people and changes in expectations for the future. RESULTS: Qualitative analysis of the interviews before and after training suggested that social skills training could raise the self-esteem of leprosy patients and combat self-perceived stigma. Increase in self-esteem, as evident through the verbal interactions with the interviewers and behavioural changes in the community, were noted in the majority of patients. CONCLUSION: Social skills training along with counseling may be able to increase the self-esteem of leprosy patients, and so be a useful part of leprosy rehabilitation schemes to try and combat the stigma of leprosy.

Awareness, social acceptance and community views on leprosy and its relevance for leprosy control, Tamil Nadu.

As the leprosy burden has declined considerably, we need to understand the current social status of the disease and patients. A qualitative study was conducted in a rural community near Chennai in Tamil Nadu, between March and October 2011. In-depth interviews with 72 leprosy patients from 25 villages and 3 focus group discussions (FGDs) with 26 women from 3 villages were conducted using a guide. The qualitative data were grouped into different domains and analysed. Most of them did not have basic knowledge on leprosy; instead there were misconceptions on cause and spread of leprosy. Nearly one third of the patients had not disclosed about the disease to their spouse, family members, relatives or friends for fear of social rejection, discrimination and ill treatment. In all, more than half of them had self-stigma and, most of them who had deformity faced actual stigma by way of disowning, isolation and social rejection. Many patients, particularly PB cases had the behavior of "denial". FGD women reported of self and actual stigma, particularly towards deformity and disfigurement, for fear of getting infected. Stigma among patients with deformity, and denial of the disease among PB cases, were highlighted. Importance of awareness programmes to remove misconceptions related to cause and spread of the disease was stressed. Need for person-centered social treatment was suggested for increased case detection.

Clinical profile and impact on quality of life: seven years experience with patients of alopecia areata.

BACKGROUND: Alopecia areata (AA) is the most common cause of localized, non-scarring alopecia. Stress and other psychological factors have been implicated in the causation of the disease, and it is also found to alter the course of the disease process. Unfortunately no one has studied the impact of AA on the quality of life, which includes the social life of the patients. AIM: To study the clinical profile and impact of alopecia areata on the quality of life, including the social life of adult patients with severe forms of the disease. METHODS: The present study determined the clinical pattern of AA and its impact on the quality of life (QOL) in all the patients with severe forms of alopecia areata attending the Dermatology Outpatient Department. RESULTS: The male : female ratio was 1.86 : 1. Most (58.03%) of the patients were between 21 and 40 years of age. Almost 40% of the patients had associated systemic disease or other dermatological disorders. A family history of AA was found in 593 (20.02%) of the patients. Nail changes were observed in 297 (10%) of the patients. There were significant differences between the mean Dermatology Life Quality Index (DLQI) score in cases with severe forms of AA and controls ( P < 0.001). CONCLUSIONS: Severe forms of alopecia areata had a major impact on the psychosocial well-being of the patients. These individuals had to be treated early, and they required more than just prescription drugs. Educational and psychological support in addition to medical therapy for AA could improve their long-term physical outcomes.