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1.
PLoS Negl Trop Dis ; 14(3): e0008173, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-32155158

RESUMO

BACKGROUND: Several studies have shown that leprosy, podoconiosis and lymphatic filariasis impact individual quality of life. In contrast, family quality of life has not received as much attention despite evidence that families are also affected. This is especially relevant given the crucial role of the family in most societies around the world. This study looks at the impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life. METHODOLOGY: The study used a cross-sectional design with a qualitative approach. Both semi-structured interviews and focus group discussions were conducted. Participants, persons affected and their family members, were selected by purposive sampling. Data were collected between August and November 2017 in Awi zone, Northwest Ethiopia and analysed by three independent researchers using open, inductive coding and content analysis. RESULTS: A total of 86 participants were included in this study: 56 participants in the in-depth interviews and 30 participants in the focus group discussions. We found that participation restrictions, reduced productivity and marginalisation were common. In addition, discrimination in the communities occurred often, often extending to family members of persons affected. Divorce and difficulties in finding a spouse were common for persons affected and their family members. Many persons affected reported mental health problems. While most people got social and physical support from their families, there were a few exceptions. In particular, persons with younger children seemed to lack social support. Having to provide for their affected family member sometimes caused stress, school dropouts and an additional workload. Financial problems and loss of livelihood were reported by almost all participants. CONCLUSION: This study revealed that leprosy, lymphatic filariasis and podoconiosis have an effect on several dimensions of family quality of life. Many problems reported related to stigma and poverty.


Assuntos
Filariose Linfática/psicologia , Elefantíase/psicologia , Saúde da Família , Família/psicologia , Hanseníase/psicologia , Qualidade de Vida/psicologia , Adolescente , Adulto , Idoso , Estudos Transversais , Etiópia , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Estigma Social , Adulto Jovem
2.
Rev Bras Enferm ; 72(5): 1405-1415, 2019 Sep 16.
Artigo em Inglês, Português | MEDLINE | ID: mdl-31531668

RESUMO

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.


Assuntos
Hanseníase/economia , Fatores Socioeconômicos , Saúde Global , Humanos , Hanseníase/epidemiologia , Hanseníase/psicologia , Saúde Pública/métodos
3.
PLoS Negl Trop Dis ; 13(9): e0007710, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31490931

RESUMO

BACKGROUND: Integrated disease management, disability and inclusion (DMDI) for NTDs is increasingly prioritised. There is limited evidence on the effectiveness of integrated DMDI from the perspective of affected individuals and how this varies by differing axes of inequality such as age, gender, and disability. We used narrative methods to consider how individuals' unique positions of power and privilege shaped their illness experience, to elucidate what practical and feasible steps could support integrated DMDI in Liberia and beyond. METHODS: We purposively selected 27 participants affected by the clinical manifestations of lymphatic filariasis, leprosy, Buruli Ulcer, and onchocerciasis from three counties in Liberia to take part in illness narrative interviews. Participants were selected to ensure maximum variation in age, gender and clinical manifestation. Narrative analysis was grounded within feminist intersectional theory. FINDINGS: For all participants, chronic illness, morbidity and disability associated with NTDs represented a key moment of 'biographical disruption' triggering the commencement of a restitution narrative. Complex health seeking pathways, aetiologies and medical syncretism meant that adoption of the 'sick role' was initially acceptable, but when the reality of permanency of condition was identified, a transition to periods of chaos and significant psycho-social difficulty occurred. An intersectional lens emphasises how biographical disruption is mediated by intersecting social processes. Gender, generation, and disability were all dominant axes of social inequity shaping experience. SIGNIFICANCE: This is one of the first studies to use narrative approaches to interrogate experience of chronic disabling conditions within LMICs and is the only study to apply such an analysis to NTDs. The emotive power of narrative should be utilised to influence the value base of policy makers to ensure that DMDI strategies respond holistically to the needs of the most marginalised, thus contributing to more equitable people-centred care.


Assuntos
Doença Crônica/psicologia , Doenças Negligenciadas/psicologia , Adaptação Psicológica , Adolescente , Adulto , Úlcera de Buruli/psicologia , Pessoas com Deficiência/psicologia , Filariose Linfática/psicologia , Feminino , Humanos , Hanseníase/psicologia , Libéria , Acontecimentos que Mudam a Vida , Masculino , Pessoa de Meia-Idade , Oncocercose/psicologia
4.
BMC Public Health ; 19(1): 424, 2019 Apr 23.
Artigo em Inglês | MEDLINE | ID: mdl-31014307

RESUMO

BACKGROUND: This paper investigates the relationship between psychological health and quality of life (QOL) of people affected by leprosy (PAL) living in a community in Guangdong province, China. METHODS: A population-based cross-sectional survey was conducted from April to October 2016 in Guangdong province, China. The 12-item general health questionnaire (GHQ12) and World Health Organization Quality of life-BREF (WHOQOL-BREF) were used to evaluate the psychological health and QOL of the participants. PAL recruited for this study included those who were (1) registered in LEPMIS by the end of 2015 and living in the community, (2) able to be contacted by investigators, and (3) willing to provide informed written consent for enrolling in the study. Proportions, medians, and ratios were used to describe the demographics of the participants and χ2 test was used to compare groups with different psychological health states. Pearson's correlation coefficient and logistic regression analyses were used to assess the relationship between GHQ12 and QOL score. RESULTS: A total of 7230 PAL (5527 males and 1701 females, average age 67.3 ± 13.1 years) living in the community participated in the study. The participants averaged 1.7 ± 2.7 points on the GHQ12. Of these, 23.5% had scores meeting a psychological disorder (≥3 points). The scores for the physical, psychological, and social relationships, and environment dimensions of QOL were 17.2 ± 2.4, 20.6 ± 2.7, 9.7 ± 1.7, and 24.6 ± 4.0, respectively. Gender, age, employment, profession, and the four dimensions of QOL were independent factors associated with psychological health of PAL. CONCLUSION: In addition to focusing on the factors associated with poor QOL and psychological health amongst PAL, there is an urgent need for stigma reduction, rehabilitation programs and social integration. This may be achieved by engaging community members together with PAL to design a locally tailored intervention program.


Assuntos
Hanseníase/psicologia , Transtornos Mentais/psicologia , Qualidade de Vida , Adulto , Idoso , China , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
5.
PLoS One ; 14(2): e0210955, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30726259

RESUMO

BACKGROUND: Leprosy remains a disease of concern in many countries including Nepal. To achieve the target of elimination, the WHO strategy promotes comprehensive education of patients, healthcare workers (HCWs), and the public on leprosy-related issues. However most educational programs are based on the concerns of HCWs and not on patients' needs. The objective of this paper is to explore the educational needs of leprosy affected patients in Nepal and compare them to the needs perceived by HCWs. METHODOLOGY/PRINCIPAL FINDINGS: Semi directive interviews were conducted with patients and HCWs. The data was analyzed using the basic interpretative qualitative framework. The study was conducted in two leprosy referral centers, one university hospital and one primary health care center: Lalgadh Leprosy Hospital and Services Centre, Anandaban Hospital and its satellite clinic in Patan, B. P. Koirala Institute of Health Sciences in Dharan, and the Itahari primary health care centre. The results show that there remains a lack of knowledge regarding the disease (origins, manifestations, prevention and treatment) contributing to late care seeking behavior and high levels of stigma, with an important psychological and financial stress for patients. All of the HCWs displayed a good understanding of patients' difficulties and needs and acknowledged the key role of patient education. However, they expressed several challenges in managing patients due to lack of time, human resources and training in patient education. CONCLUSIONS/SIGNIFICANCE: Further efforts need to be made to increase patients' general knowledge of the disease in order to motivate them to seek healthcare earlier and change their perception of the disease to reduce stigma. HCWs need proper training in patient education and counseling for them to acquire the necessary skills required to address the different educational needs of their patients. The use of lay and peer counselors would be an option to address the workload and lack of time expressed by HCWs.


Assuntos
Cuidadores/psicologia , Aconselhamento/métodos , Hanseníase/psicologia , Educação de Pacientes como Assunto , Relações Profissional-Paciente , Adolescente , Adulto , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Hanseníase/diagnóstico , Hanseníase/terapia , Amor , Masculino , Nepal , Grupo Associado , Pesquisa Qualitativa , Estigma Social , Adulto Jovem
6.
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
7.
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
8.
Rev. pesqui. cuid. fundam. (Online) ; 11(1): 211-215, jan.-mar. 2019. graf., tab.
Artigo em Inglês, Português | LILACS, BDENF - Enfermagem | ID: biblio-968500

RESUMO

Objetivo: Avaliar os aspectos referentes as limitações físicas, psicossociais e qualidade de vida das pessoas atingidas pela hanseníase. Método: Estudo quantitativo, transversal. Foram aplicadas as escalas Screening Activity Limitation and Safety Awareness (SALSA), Participação Social e World Health Organization Quality of Life (WHOQOL-bref) com 31 sujeitos. Resultado: Evidenciou-se que a maioria dos participantes apresentava algum grau de restrição física e social. Correlacionando com o grau de incapacidade, destaca-se que os pacientes que apresentaram restrições também possuíam grau II de incapacidade. Quanto à qualidade de vida, o domínio psicológico e o de relações sociais apresentaram as médias mais altas, enquanto o físico e o ambiental tiveram as mais baixas. Conclusão: Afirma-se a necessidade de priorização e intensificação das ações de prevenção de incapacidades da hanseníase


Objective: Analyze the aspects related to the physical, psychosocial and quality of life of people affected by leprosy. Method: Quantitative, crosssectional study. The Screening Activity Limitation and Safety Awareness (SALSA), Social Participation and e World Health Organization Quality of Life (WHOQOL-bref) scales were applied with 31 subjects. Result: The majority of the participants presented some degree of physical and social restriction. The correlation with the degree of disability highlighted that the patients who presented restrictions also had degree of disability II. About the quality of life, the psychological domain and the social relations showed the highest averages, while the physical and the environmental had the lowest ones. Conclusion: It is necessary to prioritize and intensify actions to prevent disability in leprosy


Objetivo: Evaluar los aspectos referentes a las limitaciones físicas, psicosociales y calidad de vida de las personas afectadas por la lepra. Método: Estudio cuantitativo, transversal. Se aplicaron las escalas Screening Activity Limitation and Safety Awareness (SALSA), Participación Social y World Health Organization Quality of Life (WHOQOL-bref) con 31 sujetos. Resultado: Se evidenció que la mayoría de los participantes presentaba algún grado de restricción física y social. Correlacionando con el grado de incapacidad, se destaca que los pacientes que presentaron restricciones, también poseían grado II de incapacidad. En cuanto a la calidad de vida, el dominio psicológico y el de relaciones sociales presentaron las medias más altas, mientras que el físico y el ambiental tuvieron las más bajas. Conclusión: Se afirma la necesidad de priorización e intensificación de las acciones de prevención de incapacidades de la lepra


Assuntos
Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Idoso , Hanseníase/prevenção & controle , Hanseníase/psicologia , Hanseníase/terapia , Qualidade de Vida , Autocuidado , Perfil de Impacto da Doença
9.
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
11.
PLoS One ; 13(12): e0209676, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30589875

RESUMO

BACKGROUND: Leprosy remains a major stigmatizing condition. Stigma is a dynamic process resulting from the interaction between physical attributes caused by leprosy and the existing stereotypes in a community. Leprosy has pervasive impacts on all areas of life including psychosocial burden to an individual, social interaction, marriage, and employment. These impacts vary and are largely dependent on a particular culture and community. The main objective of this study was to explore the perceived stigma of leprosy amongst community members and health care providers in Lalitpur district of Nepal. METHODS: A total of six focused group discussions (FGDs) with 43 participants from a community living close to Anandaban Leprosy Hospital and ten semi structured interviews (SSIs) with health care providers were conducted between October and December 2016. An interview guide was used for the FGDs and SSIs. All qualitative data were transcribed and translated into English and were thematically analyzed using Atlas.ti software. RESULTS: Visible deformities due to leprosy was one of the major contributing factors for stigma. Stigma was further exacerbated by an attitude to conceal the disease due to perceived fear of potential discrimination. While over the years, stigma was felt to be decreasing, various aspects of life were still affected by leprosy stigma including marriage, employment and social interaction. This was largely attributed to leprosy and its consequences, specifically the disability and deformity caused by leprosy. CONCLUSION: Leprosy was still perceived to be feared and concealed because of potential discrimination, even within the community that was close to a long established leprosy hospital. Various aspects such as marriage, employment and social interaction were still affected by the stigma which was strongly associated with visible deformities. In addition to ongoing rehabilitation and stigma reduction programs, integrating strategies such as community engagement wherein community and leprosy affected person jointly take a role in stigma reduction programs can be helpful.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde , Hanseníase/epidemiologia , Hanseníase/psicologia , Percepção , Estigma Social , Adulto , Idoso , Estudos Transversais , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Nepal/epidemiologia , Pesquisa Qualitativa , Inquéritos e Questionários
12.
PLoS Negl Trop Dis ; 12(9): e0006808, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-30252851

RESUMO

INTRODUCTION: Assessment of attitudes of health care professionals is important as negative attitude could constitute a major deterrent to care-seeking by persons affected by neglected tropical diseases (NTDs) such as leprosy. Leprosy continues to pose a major disease burden in India with an annual new case detection rate of 10.17 per 100,000 population. This paper reports on the development and validation of a culturally appropriate scale to measure attitude of health care providers (HCPs) towards persons affected by leprosy in Tamil Nadu, India. METHODOLOGY/PRINCIPAL FINDINGS: The Affective, Behavioural and Cognitive (ABC) model of attitudes guided the development of the scale. Steps in scale development included qualitative interviews and focus group discussions with medical officers and paramedical staff selected from high prevalence districts in Tamil Nadu, India which informed the development of the draft scale. Reviews of existing attitude questionnaires in related areas further contributed to scale development and together helped to generate a large pool of items which was then subjected to Thurston's scaling method for selection of items from this pool. Face and content validity were obtained, following which internal consistency and test, re-test reliability were assessed. Scaling exercise resulted in 11 items being discarded from an initial pool of 38, owing to the poor agreement among experts regarding relevance. Face and content validity were good with experts endorsing relevance and applicability of items. The intra-class correlation coefficient (ICC) for test re-test reliability of the 27 item scale was 0.6 (95% CI: 0.20-0.78) indicating marginal intra-class correlation. The overall Cronbach's alpha was 0.85 while the alphas for each of the affective and behavioural components was good at 0.78 and 0.69 respectively indicating a good degree of consistency and homogeneity between items but the alpha for the cognitive component was low at 0.53. CONCLUSIONS: The ABC model of attitudes guided the development of the scale, ensured a mix of 27 items tapping into the three domains of Affect, Behaviour and Cognition which best explained the attitude construct. With good validity and alphas for each of the affective, behavioural components and overall alpha estimates, this scale can be a valuable tool to provide accurate estimates of the true attitudes held by HCPs. This, in turn, would be useful to obtain insights for appropriate intervention programmes that would help change negative attitudes of HCPs towards persons affected by leprosy. With some adaptations, the scales can be validated for other NTDs as well.


Assuntos
Atitude do Pessoal de Saúde , Pessoal de Saúde/psicologia , Entrevista Psicológica/métodos , Hanseníase/psicologia , Humanos , Índia , Hanseníase/diagnóstico , Hanseníase/tratamento farmacológico
13.
Int J Mycobacteriol ; 7(3): 247-250, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30198504

RESUMO

Background: This study aimed to explore the disease severity perceived by people affected with leprosy reporting at leprosy referral center, Purulia, West Bengal, India. Methods: A cross-sectional study was conducted among 358 persons affected by leprosy above the age of 18 and married who were reporting at tertiary leprosy referral hospital, Purulia, West Bengal, India. A semistructured questionnaire was prepared to collect the demographic profile, disease profile, and perceived severity of the disease. Results: Among the participants, 41% of them were female, 60% were aged between 18 and 45 years, 58% were literate, and 40% of the participants had physical disability. The participants had multiple feelings of fear, anxiety and sorrow when first diagnosed as leprosy affected. Majority (69%) of the participants had fear of the disease. A significant association was present among males and females feeling fear of leprosy and the female feared more than male. Conclusion: The present study emphasizes the need for continuous counseling and health education for persons affected with leprosy to avoid or minimize the psychological problems. Periodical screening and counseling will improve their psychosocial well-being and quality of life.


Assuntos
Pessoas com Deficiência/psicologia , Hanseníase/psicologia , Adolescente , Adulto , Idoso , Estudos Transversais , Medo/psicologia , Feminino , Humanos , Índia/epidemiologia , Hanseníase/diagnóstico , Hanseníase/epidemiologia , Masculino , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Índice de Gravidade de Doença , Inquéritos e Questionários , Adulto Jovem
15.
Bull Hist Med ; 92(2): 261-286, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29961715

RESUMO

In the face of an obdurate disease, the Mission to Lepers made a virtue out of "saving" children from leprosy and from paganism by separating them from their parents so that they became a source of publicity, sponsorship, and fund-raising. This policy transformed a benevolent work of mercy into a professional one, for it soon became clear that children separated from their parents did not develop leprosy. Consequently, the asylum became a site where scientific conclusions were made about the transmission of the disease, and the authority of the mission was enhanced at international medical conferences. This nascent professionalism became sufficient for the Philippines to also be persuaded to remove children from their leprosy-infected parents. In turn, Culion-based research on the observations of children ensured the authority of the American and Philippine doctors in informing decisions made by the League of Nations and later the World Health Organization.


Assuntos
Hanseníase/história , Religião e Medicina , Adolescente , Criança , Pré-Escolar , História do Século XIX , História do Século XX , Humanos , Índia , Hanseníase/psicologia , Hanseníase/terapia , Filipinas
16.
Fontilles, Rev. leprol ; 31(4): 271-289, ene.-abr. 2018. maps, tab, graf
Artigo em Espanhol | IBECS | ID: ibc-173249

RESUMO

La lepra o enfermedad de Hansen es una enfermedad infecciosa crónica incapacitante. Esta enfermedad permanece en el olvido de la ciencia y de la investigación en el campo de la salud; las mujeres que la padecen sufren doblemente la exclusión, por su condición de enfermas y de mujeres. Ser mujer hará que tengan menos probabilidades que los hombres de ser diagnosticadas a tiempo, aumentando el riesgo de desarrollar una discapacidad de por vida. Lo que hace que se observe, dentro de la propia exclusión de la enfermedad, una triple discriminación en las mujeres y niñas enfermas de lepra, por su género, por las discapacidades que resultan de la enfermedad y por sufrir el impacto del estigma, lo que acentúa aún más su pobreza


Leprosy or Hansen's disease is a chronic disabling infectious disease. This disease remains in the oblivion of science and research in the field of health; women who suffer from it suffer double exclusion, because they are sick and women. Being a woman will make them less likely than men to be diagnosed early, increasing the risk of developing a disability for life. What makes observed, within the exclusion of the disease itself, a triple discrimination in women and girls suffering from leprosy, by their gender, by the disabilities that result from the disease and by suffering the impact of stigma, which it further accentuates their poverty


Assuntos
Humanos , Feminino , Estigma Social , Hanseníase/epidemiologia , Gênero e Saúde , Fatores de Risco , Pobreza , Hanseníase/psicologia , Discriminação Social/psicologia , Etiópia/epidemiologia , Instalações Sanitárias
17.
Rev Bras Enferm ; 71(suppl 1): 660-667, 2018.
Artigo em Inglês, Português | MEDLINE | ID: mdl-29562025

RESUMO

OBJECTIVE: To analyze the interference of leprosy in women's life regarding work and daily life activities. METHOD: Exploratory qualitative study developed from semi-structured interviews and with the use of field diaries. The strategy of the organization of data was a thematic analysis of content and referential of the work process in health and gender. RESULTS: The themes presented are: "The leprosy pains", "Changes with the disease and adaptation at work and activities" and "Being a woman with leprosy". On them, we present the aspects that changed in women's life from the leprosy, especially regarding work and daily activities. Beyond physical limitation, there are impacts on social relations and above all on formal work, there may even be dismission. FINAL CONSIDERATIONS: In women affected by leprosy, work and daily activities are directly affected; this deepens the social difficulties and requires attention of health professionals.


Assuntos
Hanseníase/complicações , Trabalho/psicologia , Adulto , Idoso , Efeitos Psicossociais da Doença , Feminino , Humanos , Entrevistas como Assunto/métodos , Hanseníase/psicologia , Pessoa de Meia-Idade , Saúde Pública/métodos , Pesquisa Qualitativa , Estigma Social , Trabalho/normas
18.
BMC Public Health ; 18(1): 201, 2018 01 30.
Artigo em Inglês | MEDLINE | ID: mdl-29382314

RESUMO

BACKGROUND: Lymphatic filariasis (LF) and leprosy are disabling infectious diseases endemic in Nepal. LF infection can lead to lymphoedema and hydrocoele, while secondary effects of leprosy infection include impairments to hands, eyes and feet. The disabling effects of both conditions can be managed through self-care and the supportive effects of self-help groups (SHGs). A network of SHGs exists for people affected by leprosy in four districts in Nepal's Central Development Region, however no such service exists for people affected by LF. The aim of this study was to determine the feasibility of integrating LF affected people into existing leprosy SHGs in this area. METHODS: A survey was conducted using a semi-structured questionnaire to elicit information on: (i) participant characteristics, clinical manifestation and disease burden; (ii) participants' knowledge of management of their condition and access to services; and (iii) participants' knowledge and perceptions of the alternate condition (LF affected participants' knowledge of leprosy and vice versa) and attitudes towards integration. RESULTS: A total of 52 LF affected and 53 leprosy affected participants were interviewed from 14 SHGs. On average, leprosy affected participants were shown to have 1.8 times greater knowledge of self-care techniques, and practiced 2.5 times more frequently than LF affected participants. Only a quarter of LF affected participants had accessed a health service for their condition, compared with 94.3% of leprosy affected people accessing a service (including SHGs), at least once a week. High levels of stigma were perceived by both groups towards the alternate condition, however, the majority of LF (79%) and leprosy (94.3%) affected participants stated that they would consider attending an integrated SHG. CONCLUSIONS: LF affected participants need to increase their knowledge of self-care and access to health services. Despite stigma being a potential barrier, attitudes towards integration were positive, suggesting that the SHGs may be a good platform for LF affected people to start self-care in this area. TRIAL REGISTRATION: This is not a registered trial.


Assuntos
Serviços de Saúde Comunitária/organização & administração , Prestação Integrada de Cuidados de Saúde , Filariose Linfática/terapia , Autocuidado , Grupos de Autoajuda/organização & administração , Filariose Linfática/psicologia , Estudos de Viabilidade , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Acesso aos Serviços de Saúde , Humanos , Hanseníase/psicologia , Hanseníase/terapia , Masculino , Pessoa de Meia-Idade , Nepal , Estigma Social
19.
PLoS Negl Trop Dis ; 12(2): e0006233, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-29432474

RESUMO

BACKGROUND: Although leprosy is one of the oldest diseases known to humanity, it remains largely misunderstood. Misconceptions about leprosy lead to stigma towards people with the disease. This study aimed at exploring the knowledge, perceptions and attitudes regarding leprosy in rural Cameroon. METHODS: We carried out a cross-sectional community survey of 233 respondents aged 15-75 years, free from leprosy, and living in two rural health districts of the South-west Region of Cameroon. A questionnaire designed to evaluate knowledge, perceptions and attitudes about leprosy was used. Binary logistic regression was used to determine independent predictors of negative attitudes. RESULTS: About 82% of respondents had heard about, and 64.4% knew someone with leprosy. Information on leprosy was mainly from community volunteers (40.6%), friends (38.0%), and the media (24%). Only 19.7% of respondents knew the cause of leprosy, and a considerable proportion linked it to a spell (25.3%), unclean blood (15.5%) and heredity (14.6%). About 72% knew that leprosy is curable and 86.3% would advise medical treatment. Attitudes towards leprosy patients were generally negative. Only 42% would shake hands, 32.6% would share the same plate, and 28.3% and 27% respectively, would allow their child to play or marry a person with leprosy. Furthermore, only 33.9% approved of participation of leprosy patients, and 42.9% of their employment. Independent predictors of negative attitudes were: the belief that leprosy is a curse; is caused by a germ; and having seen a leprosy patient. The negative attitudes were dampened by: the beliefs that leprosy is a punishment, is hereditary and is due to poor personal hygiene. CONCLUSION: An awareness intervention using community volunteers and the media, with information on the cause of leprosy, its clinical manifestations and curability, and sensitization messages correcting the misconceptions and beliefs regarding leprosy, could improve the community knowledge and attitudes towards leprosy. This would ultimately contribute to the reduction of leprosy burden in the community.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Hanseníase/psicologia , Adolescente , Adulto , Idoso , Camarões/epidemiologia , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , População Rural , Inquéritos e Questionários , Adulto Jovem
20.
Rev Bras Enferm ; 71(1): 163-169, 2018.
Artigo em Inglês, Português | MEDLINE | ID: mdl-29324959

RESUMO

OBJECTIVE: To characterize approach methods for intradomiciliary contacts (IdC) of leprosy cases resident in Northern Brazil, during 2001-2012. METHOD: A cross-sectional and descriptive study in the state of Rondônia. Included IdC of leprosy cases diagnosed/reported in SINAN-Ministry of Health (MS), 2001-2012. A semi-structured instrument was applied to the IdCs, with six interventions: complete dermatological examination; complete neurological examination; BCG vaccination; instructions for return to the health unit; BCG guidance; and guidance to mobilize other contacts.Results: From a total of 459 IdCs included, failure to perform the dermatological examination was reported by 191 people (41.6%) and the neurological examination, by 252 (54.9%); 138 (30.1%) did not have BCG indicated and 122 (26.6%) did not receive guidelines; 257 (56.0%) were not advised to return for a new evaluation/follow-up and 186 (40.5%) were not asked to mobilize other contacts. CONCLUSION: Despite the favorable indicators of IdC examination coverage in the state, the evaluation process presents patterns that indicate operational quality failures.


Assuntos
Hanseníase/epidemiologia , Pacientes/psicologia , Percepção , Vigilância da População/métodos , Adolescente , Adulto , Brasil/epidemiologia , Criança , Busca de Comunicante/métodos , Estudos Transversais , Feminino , Humanos , Hanseníase/psicologia , Masculino , Pessoa de Meia-Idade
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