Socioeconomic factors related to leprosy: an integrative literature review / Factores socioeconómicos relacionados con la lepra: revisión integrativa de la literatura / Fatores socioeconômicos relacionados à hanseníase: revisão integrativa da literatura

ABSTRACT Objective: To investigate in the literature the relation of socioeconomic factors in the incidence of the disease and other outcomes related to leprosy. Method: Integrative review conducted in Lilacs, Medline, Scopus databases and SciELO online library with studies from 2000 to 2016. Results: 32 studies were included. Only studies that analyzed statistical associations of socioeconomic factors and outcomes related to leprosy were selected. Conclusion: Leprosy is greatly affected by the social context in which the patient is inserted, the chances of exposure to illness are the result of a set of not only individual aspects, but also of contexts or collective conditions. It is imperative for Nursing, as an essential part of the multiprofessional team entrusted with the care and surveillance of the disease, to recognize these factors to predict unfavorable outcomes and to develop new practices capable of reducing inequities.

RESUMEN Objetivo: Investigar en la literatura la relación de los factores socioeconómicos en la ocurrencia de la enfermedad y otros resultados relacionados con la lepra. Método: Revisión integrativa realizada en las bases de datos Lilacs, Medline, Scopus y en la biblioteca en línea SciELO con estudios de 2000 a 2016. Resultados: Se incluyeron 32 estudios. Sólo las encuestas que analizaron las asociaciones estadísticas de los factores socioeconómicos y los resultados relacionados con la lepra fueron seleccionados. Conclusión: La lepra sufre una gran influencia del contexto social en que el paciente está inserto, las posibilidades de exposición al enfermo se derivan de un conjunto de aspectos no sólo individuales, sino también de contextos o condiciones colectivas. Es imperativo a la Enfermería, como parte esencial del equipo multiprofesional encargado, para el cuidado y vigilancia de la enfermedad, reconocer esos factores para predecir desenlaces desfavorables y construir nuevas prácticas capaces de reducir iniquidades.

RESUMO Objetivo: Investigar na literatura a relação dos fatores socioeconômicos na ocorrência da doença e outros desfechos relacionados à hanseníase. Método: Revisão integrativa realizada nas bases de dados Lilacs, Medline, Scopus e na biblioteca on-line SciELO com estudos de 2000 a 2016. Resultados: Foram incluídos 32 estudos. Apenas pesquisas que analisaram associações estatísticas dos fatores socioeconômicos e os desfechos relacionados à hanseníase foram selecionadas. Conclusão: A hanseníase sofre grande influência do contexto social em que o doente está inserido, as chances de exposição ao adoecimento são resultantes de um conjunto de aspectos não apenas individuais, mas também de contextos ou condições coletivas. É imperativo à Enfermagem, como parte essencial da equipe multiprofissional incumbida, para o cuidado e vigilância da doença, reconhecer esses fatores para predizer desfechos desfavoráveis e construir novas práticas capazes de reduzir iniquidades.

Benefícios previdenciários dos indivíduos acometidos por hanseníase no município de Vitória da Conquista, BA: sujeitos, direitos e trajetórias

Apesar dos avanços no combate a hanseníase, as dificuldades em erradicar a doença persiste no cenário brasileiro. Parte da população ainda é carente de informações acerca deste agravo, o que leva a procurar os serviços de saúde tardiamente. Associado a isso, o diagnóstico e o tratamento tardio repercutem em incapacidades físicas graves. Tais incapacidades impactam significativamente na vida do indivíduo, sobretudo, no trabalho. A inabilidade ao trabalho predispõe a busca por benefícios previdenciários. Tratando-se de uma doença marcada pela violação de direitos humanos desde o isolamento compulsório até os dias de hoje, a discussão referente a proteção dos direitos previdenciários dos indivíduos acometidos, se mostra relevante. O estudo analisou a garantia dos direitos previdenciários e a trajetória na defesa desses direitos por indivíduos acometidos por hanseníase no município de Vitória da Conquista (BA), por meio de uma pesquisa qualitativa de delineamento exploratório. Toda a discussão levantada pelo estudo foi centrada na narrativa de vinte sujeitos que descreveram a trajetória em busca da garantia do direito previdenciário. Diante das ponderações verificadas no estudo, conclui-se que embora muitos indivíduos acometidos pela doença não tenham registrado dificuldades em conseguir o benefício previdenciário, para muitos dos sujeitos, essa trajetória foi marcada por adversidades.

Despite of advances in the fight against Hansens disease, persists in the Brazilian scene the difficulties in eradicating the disease. Part of population is still lacking information about this injury, which leads them to seek health services late. Associated with this, diagnosis and late treatment reverberate in severe physical disabilities. Such disabilities impact significantly on the individuals life, especially at work. The inability to work predisposes the search for social security benefits. Treating of a disease marked by violations of human rights, since from the compulsory isolation until the present days, the discussion regarding to protection of pension rights of affected individuals, it’s shown relevant. The study examined the warranty of pension rights and the trajectory in defense these rights for individuals affected by leprosy in the Vitoria da Conquista Town (Bahia, Brasil), through a qualitative research of exploratory design. The whole discussion raised by the study was focused on the narrative of twenty subjects who described the journey in search of the guarantee the social security law. On the weights observed in the study, it was concluded that although many individuals affected by the disease have not registered difficulties in achieving social security benefit, for many others subjects, this trend has been marked by adversity.

Awareness about the persons with disability act among leprosy patients and other disabled persons.

To assess the level of awareness about the different provisions of the Persons with Disability Act (PWD Act) among leprosy patients and other disabled, 233 disabled persons from the self-help groups formed by Vadathorasalur Leprosy Control Unit have been interviewed using a structured interview checklist. The results show that 74.7% of the respondents were aware that identity cards are available for the disabled, 56.2% were aware of the free education benefit to the disabled, as low as 35.6% were aware of the scholarships, 33% knew about the employment reservations, 24.9% heard about the housing scheme of the government for the disabled, but 24.5% only knew about law against discrimination, 31.8% came in contact with institutions for the severely disabled and only 16% were aware of the unemployment allowance to the disabled. The level of awareness is low among women with regard to all components of the Act. It was found that students studying up to secondary level were not aware of the availability of scholarships and free education, which needs to be seriously looked into, especially by educational institutions. The level of formal education played a significant role in increasing awareness about the Act among literates. The knowledge is low among persons of all occupations. The study showed that there is a great need for an educational intervention programme to publicize the provisions of the Act among the disabled and their families.

Analise espacial da endemia hansenica na area urbana do municipio de Fernandopolis/SP / Spatial analysis of the leprosy endemic in the Fernandopolis municipality/SP

A hanseniase continua apresentando coeficientes de prevalencia superiores a 1 caso/10.00 habitantes em 12 paises no mundo. No Brasil, apesar de todo o esforco internacional e nacional, a meta de eliminacao da doenca proposta pela Organizacao Mundial da Saude - reducao da prevelencia para menos de um caso para cada dez mil habitantes -, foi postergada para 2005. Para analisar a endemia hansenica no municipio de Fernandopolis/SP partiu-se do pressuposto de que a ocupacao espacial da populacao e um processo socialmente construido, e sendo que o espaco social e determinante no processo saude-doenca, sendo as condicoes de vida da populacao a expressao mais significativa desse processo. O presente estudo identificou e agrupou areas homogeneas de risco dentro do municipio de Fernandopolis. Atraves das variaveis do Censo Demografico de 2000, relativas a renda, a escolaridade, a estrutura urbana e as condicoes de habitacao, criou-se um Indice de Carencia Social, classificando os setores censitarios urbanos e verificando a associacao dessa carencia com os coeficientes de deteccao da doenca. O metodo proposto contribuiu para detectar as desigualdades socio-economicas e identificar a coerencia com os padroes da distribuicao da ocorrencia da hanseniase, constatando areas de risco. Evidenciaram-se areas prioritarias para o desenvolvimento de acoes de saude, que possibilitara instrumentalizar o planejamento em nivel local e permitir a racionalizacao de recursos financeiros

Problems and coping strategies of families having patients with and without deformities.

Deformity in leprosy is a major problem causing serious socio-economic and psychological consequences to the patients and their families, as well as for the programmers. This paper examines the nature and extent of social and economic problems of leprosy-affected families having patients with and without deformities and their strategy to cope with those problems. The data were collected from 500 sampled families in two monotherapy districts in Tamilnadu in 1989-1990. About 20% of the families reported facing socioeconomic problems. The proportion of families having patients with deformities facing problems was ten times higher (57.3%) than those having patients with no deformities (5.7%). Majority of the problems of the affected families were economic. The major strategy adopted to deal with economic problems was to adjust within the earnings of other family members to make up the loss or reduction in income from the patient. The major social problem faced was denial of participation in the community. While families with deformed patients adopted "acceptance of their existing situation," families with non-deformed patients adopted "avoidance" as their coping strategy. Appropriate rehabilitation programmes to restore economic security to the patients and their families is called for. There is also the need to educate the community about the disease in order to dispel the myths and fears associated with leprosy.

Employment status of leprosy patients with deformities in a suburban slum.

In a poor slum area in suburban Bombay, a study of 129 leprosy patients with deformities revealed that only 46% were employed before the appearance of deformities and most of them had lost their jobs after deformities had appeared. Health education on care of anesthetic extremities did not have the desired impact on the patients, many of them had worsening of their deformities during the phase of their employment because they had to take up any kind of work in order to make a living. They were mostly poorly educated and lacked special skills. The only feasible alternative in this kind of situation appears to be a selective community-based rehabilitation of leprosy patients with deformities.