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1.
Artigo em Inglês | MEDLINE | ID: mdl-34379960

RESUMO

BACKGROUND: Vitiligo places a significant psycho-social burden on caregivers and family members. AIMS: The aim of the study was to develop and preliminarily validate a scale to measure the psychosocial impact of vitiligo on adult family members. METHODS: Themes that emerged from qualitative interviews and a focus group discussion with family members were used to generate items for a preliminary scale, followed by pre-testing and scale development. The new scale was then tested with two comparator scales and a global question. RESULTS: A preliminary scale with 32 items was pilot tested on 30 participants. Following this, the scale was condensed to 16 items in 12 domains that were administered to 159 participants. Scale scores ranged from 0 to 48 with a mean of 19.75 ± 12.41. The scale had excellent internal consistency with Cronbach's alpha coefficient of 0.92 (0.70-0.95) and also showed good test-retest reliability at two weeks (r = 0.946). The scale showed criterion, convergent and known group validity. LIMITATIONS: It was conducted in a large teaching hospital which may have resulted in selection of patients with persistent or progressive disease and more worried family members. Vitiligo is highly stigmatized in our country and the performance of the scale may need to be evaluated in other communities and cultures as well where stigma is less oppressive. CONCLUSION: Family Vitiligo Impact Scale appears to be an easy-to-complete, reliable and valid instrument to measure the psychosocial impact of vitiligo in family members of patients. It may be useful as an outcome measure in both clinical and research settings.


Assuntos
Qualidade de Vida , Inquéritos e Questionários , Vitiligo/psicologia , Adulto , Família , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Psicometria
2.
BMC Infect Dis ; 21(1): 282, 2021 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-33740912

RESUMO

BACKGROUND: Brazil has a high leprosy burden and poor treatment outcomes (TOs), manifesting in high relapse rates. Pernambuco, an impoverished Brazilian state suffering notable geographical health inequalities, has 'hyperendemic' leprosy. Although current literature identifies barriers and facilitators influencing leprosy treatment compliance, inadequate investigation exists on other factors influencing TOs, including carers' roles and psycho-dermatological impact. This qualitative study explores experiences and perceptions of leprosy patients and their carers in Pernambuco, Brazil; to identify location-specific factors influencing TOs, and consequently inform future management. METHODS: 27, semi-structured, in-depth interviews were conducted with 14 patients and 13 carers. Participants were recruited using maximum variation and snowball sampling from three clinics in Petrolina, Pernambuco. Transcripts and field notes from both participant groups were separately analysed using conventional thematic and deviant case analysis. The University of Birmingham Internal Research Ethics Committee and Instituto Lauro de Souza Lima provided ethical approval. RESULTS: Two homologous sets of four, primary, interdependent themes influencing leprosy TOs emerged: 'personal factors'; 'external factors'; 'clinical factors'; and 'the healthcare professional (HCP)-patient-carer relationship'. Poor participant knowledge and lack of symptomatic relief caused patients to distrust treatment. However, because participants thought HCP-led interventions were vital for optimal TOs, patients were effectively persuaded to adhere to pharmaceutical treatments. High standard patient and population education facilitated treatment engagement by encouraging evidence-based medicine belief, and dispelling health myths and stigma. Healthcare, on occasions, was perceived as disorganised, particularly in resource-scarce rural areas, and for those with mental health needs. Participants additionally experienced incorrect/delayed diagnoses and poor contact tracing. Leprosy's negative socio-economic impact on employment - together with stigma, dependency and changing relationships - caused altered senses of identity, negatively impacting TOs. Better dialogue between patients, HCPs and carers facilitated individualised patient support. CONCLUSION: This study highlights the importance of: effective evidence-based leprosy education; communication between HCPs, patients and carers; state-funded support; and healthcare resource distribution. These findings, if prioritised on governmental scales, provide the valuable insight needed to inform location-specific management strategies, and consequently improve TOs. Future research should evaluate the effectiveness of these implementations. Failure to address these findings will hinder regional elimination efforts.


Assuntos
Cuidadores/psicologia , Pessoal de Saúde/psicologia , Hanseníase/terapia , Pacientes/psicologia , Adulto , Idoso , Brasil , Feminino , Humanos , Entrevistas como Assunto , Conhecimento , Hanseníase/diagnóstico , Masculino , Adesão à Medicação , Pessoa de Meia-Idade , Percepção , Retratamento , Adulto Jovem
3.
Multimedia | MULTIMEDIA | ID: multimedia-7476

RESUMO

Pessoas nas ruas e jovens escolhem as perguntas sobre o que eles conhecem da hanseníase de uma forma geral. Convidamos os nossos entrevistados e você, ouvinte, a refletir algumas: questões os principais aspectos da doença, o acesso a informações educativas e o estigma associado à hanseníase. Neste primeiro episódio, contamos com a participação de Sacha Nogueira, professora do Departamento de Enfermagem da Universidade Federal do Ceará (UFC) e coordenadora da Liga Acadêmica em Doenças Estigmatizantes (Lades / UFC). Na conversa, trazemos um contexto histórico da hanseníase, informações iniciais sobre sinais e sintomas, o panorama atual no Brasil e respostas às dúvidas dos jovens fontes.


Assuntos
Hanseníase , Entrevistas como Assunto , Educação , Comunicação , Estigma Social , Hanseníase/história , Hanseníase/psicologia
4.
Multimedia | MULTIMEDIA | ID: multimedia-6295

RESUMO

A Colônia de Itanhenga, ou Hospital Colônia Pedro Fontes, foi inaugurada em 1937 e destinada ao isolamento de pessoas afligidas pela hanseníase no estado do Espírito Santo. Em 2012, Dona Maria Pereira foi entrevistada pela Dra. Patrícia Deps, onde conta a sua história de segregação compulsória e a separação de seus filhos ao nascer, levados para o Educandário Alzira Bley


Assuntos
Hanseníase/história , Isolamento de Pacientes/história , Entrevistas como Assunto , Segregação Social
5.
Multimedia | MULTIMEDIA | ID: multimedia-6297

RESUMO

O Educandário Alzira Bley foi inaugurado em 1940. O local acolhia as crianças separadas das mães segregadas na Colônia de Itanhenga (ES, Brasil). Em 2012, Heraldo Pereira, filho de Dona Maria, foi entrevistado pela Dra. Patrícia Deps, e contou sua traumática experiência de ter vivido sua infância e adolescência longe de seus pais. Heraldo expressa sentimento de injustiça e abandono, comum a todos os filhos e filhas que foram retirados dos braços de suas mães nos hospitais colônias do Brasil. Em 2020, estima-se que há aproximadamente 10 mil filhos e filhas vítimas desta política pública de saúde ocorrida em algumas colônias do Brasil até 1980.


Assuntos
Hanseníase/história , Isolamento de Pacientes/história , Entrevistas como Assunto , Segregação Social
6.
Multimedia | MULTIMEDIA | ID: multimedia-6299

RESUMO

Nessa entrevista com Drª. Alice Cruz, Relatora Especial das Nações Unidas para Eliminação da Discriminação contra as Pessoas Afetadas pela Hanseníase, ela conta um pouco sobre o que é esse trabalho e as situações pelas quais ela passa nessa tarefa.


Assuntos
Hanseníase , Entrevistas como Assunto , 50207 , Discriminação Social , Estigma Social , Nações Unidas
7.
Multimedia | MULTIMEDIA | ID: multimedia-6301

RESUMO

A Colônia de Itanhenga, ou Hospital Colônia Pedro Fontes, foi inaugurada em 1937 e destinada ao isolamento de pessoas afligidas pela hanseníase no estado do Espírito Santo. Entrevista com o Sr. Joaquim Soares, paciente de hanseníase, e ex morador da colônia.


Assuntos
Hanseníase/história , Entrevistas como Assunto , Isolamento de Pacientes , Hospitais de Isolamento , Segregação Social
8.
PLoS Negl Trop Dis ; 14(4): e0008248, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-32352967

RESUMO

BACKGROUND: There is a dearth of experience in and evidence for cost-effective integrated community-based management of skin neglected tropical diseases (NTDs). The objective of this study was to assess the knowledge, attitude and care-seeking practices including self-care with a view to introducing appropriate community-based interventions for skin NTDs in an endemic setting in Southern Nigeria. METHODS/PRINCIPAL FINDINGS: This exploratory study adopted a mixed-methods design consisting of cross-sectional surveys of community members and health workers using interviewer-administered questionnaires; and focus group discussions (FGDs) with community members, health care workers and patients with NTDs in Anambra State, Nigeria. The survey was completed by 353 community members (61.8% female) and 15 health care workers (100.0% female). A total of 52 individuals participated in six FGDs. Of the community members, 236 (66.9%) had heard or seen a case of leprosy; 324 (91.8%) and 131 (37.5%) had heard or seen a case of Buruli ulcer and lymphatic filariasis, respectively. Again, 213 (60.3%) of the respondents reported that the diseases were caused by witchcraft or curse. As regards prevention, 241 (68.3%) suggested avoiding handshake with affected persons. Up to 223 (63.2%) of respondents strongly agreed to the seriousness of skin NTDs in their community. Meanwhile, 272 (77.1%) of the respondents believed that the transmission of these skin NTDs can be prevented. Furthermore, 324 (91.7%) desired active community engagement for control of skin NTDs. Regarding community care seeking practices, 197 (55.8%) would first visit the health centre/hospital, followed by 91 (25.8%) traditional healer/herbalist and 35 (9.9%) pharmacy/patent medicine vendor if they develop a skin NTD. Overall, 332 (94.1%) of respondents expressed interest in being taught self-care practices for skin NTDs. Out of 15 healthcare workers, 13 (86.7%) were able to correctly diagnose two of these skin NTDs and 10 (66.7%) would encourage patients to practice self-care. Prominent themes in the FGDs were belief in witchcraft and herbal remedies; as well as the occurrence of physical, social and economic distress. CONCLUSIONS: Our study helped quantify the information gaps that need to be addressed in order to create demand for integrated skin NTDs services in an endemic setting in Nigeria. Individual, structural and socioeconomic challenges to access and delivery of services were identified. Community and health care workers' empowerment and engagement through outreach and regular training, respectively may alleviate these challenges.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Controle de Infecções/métodos , Doenças Negligenciadas/epidemiologia , Doenças Negligenciadas/prevenção & controle , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Dermatopatias/epidemiologia , Dermatopatias/prevenção & controle , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Transmissão de Doença Infecciosa/prevenção & controle , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Nigéria/epidemiologia , Adulto Jovem
9.
PLoS Negl Trop Dis ; 14(5): e0008291, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-32421709

RESUMO

BACKGROUND: Skin-related neglected tropical diseases (skin NTDs) occur against a background of a very high prevalence of common skin diseases in sub-Saharan Africa. In this study, we examined the knowledge, attitude and practices (KAP) and the impact of common skin diseases in children living in a leprosy and Buruli ulcer (BU) co-endemic district in a west African country of Côte d'Ivoire, in order to help inform disease control efforts for skin NTDs. METHODS AND PRINCIPLE FINDINGS: Fourteen focus group discussions (FGDs) with schoolchildren, 5 FGDs with parents of a child affected with skin disease(s), and 27 in-depth semi-structured interviews with key personnel were conducted. The Children's Dermatology Quality of Life Index (CDLQI) questionnaire was applied to 184 schoolchildren with skin diseases. We found that there was ignorance or neglect towards skin diseases in general, due to their high prevalence and also the perceived minimal impact on children's daily lives. While the median score for the CDLQI questionnaire was 5 (IQR 2-9) out of 30, a range of scores was observed. Symptoms such as pruritus and experiencing bullying by classmates contributed to reduction in their quality of life. Poor hygiene was considered as a major cause of skin diseases. CONCLUSIONS/SIGNIFICANCE: Despite their high impact on affected populations, we observed a high level of ignorance and neglect toward common skin diseases. There is a critical need to increase awareness of skin diseases, or skin health promotion, which supports changing of the health-seeking behaviour for skin conditions. This will aid in early detection and treatment of the skin NTDs, in addition to providing benefits for those affected by other skin diseases. Educational opportunities should be utilized to their utmost. One would be associated with water, sanitation, and hygiene (WASH) strategies, but careful messages need to be developed and delivered.


Assuntos
Úlcera de Buruli/epidemiologia , Doenças Endêmicas , Conhecimentos, Atitudes e Prática em Saúde , Hanseníase/epidemiologia , Doenças Negligenciadas/epidemiologia , População Rural , Adolescente , Úlcera de Buruli/prevenção & controle , Criança , Controle de Doenças Transmissíveis/métodos , Controle de Doenças Transmissíveis/organização & administração , Costa do Marfim/epidemiologia , Feminino , Humanos , Entrevistas como Assunto , Hanseníase/prevenção & controle , Masculino , Doenças Negligenciadas/prevenção & controle , Prevalência
10.
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
11.
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
12.
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
13.
Int J Colorectal Dis ; 33(3): 317-326, 2018 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-29397430

RESUMO

PURPOSE: It is controversial whether patients fare better with conservative or surgical treatment in certain stages of acute diverticulitis (AD), in particular when phlegmonous inflammation or covered micro- or macro-perforation are present. The aim of this study was to determine long-term quality of life (QoL) for AD patients who received either surgery or conservative treatment in different stages. METHODS: We included patients treated for AD at the University Hospital Grosshadern, Munich, Germany, between January 1, 2000, and December 31, 2010. Patients were classified by the Hansen and Stock (HS) classification, the modified Hinchey classification, and the German classification of diverticular disease (CDD). Pre-therapeutic staging was based on multidetector computed tomography. Long-term QoL was assessed by the Cleveland Global Quality of Life (CGQL) questionnaire, the Short Form 36 (SF-36), and the Gastrointestinal Quality of Life Index (GIQLI). Data are mean ± SEM. RESULTS: Patients with phlegmonous AD (HS type 2a, Hinchey Ia and CDD 1b, respectively) had a better long-term QoL on the GIQLI when they were operated (78.5 ± 2.5 vs. 70.7 ± 2.1; p < 0.05). Patients with micro-abscess (CDD 2a) had a better long-term QoL on the GIQLI, CGQL, and the "Role Physical" scale of the SF-36 when they were not operated (GIQLI 86.9 ± 2.1 vs. 76.8 ± 1.0; p = 0.10; CGQL 82.8 ± 5.1 vs. 65.3 ± 11.0; p = 0.08; SF-36/Role Physical 100 ± 0.0 vs. 41.7 ± 13.9; p < 0.001). Patients with macro-abscess (CDD 2b) had a better long-term QoL when they were operated (GIQLI 89.3 ± 1.4 vs. 69.5 ± 4.5; p < 0.01; CGQL 80.3 ± 7.6 vs. 60.5 ± 5.8; p < 0.05; SF-36/Role Physical 95.8 ± 4.2 vs. 47.9 ± 13.6; p < 0.001). CONCLUSION: Considering long-term QoL, phlegmonous AD (HS type 2a, Hinchey Ia and CDD 1b, respectively) should be treated conservatively. In patients with covered perforation, abscess size should guide the decision on whether to perform surgery later on or not. In the light of long-term quality of life, patients fare better after elective sigmoid colectomy when abscess size exceeds 1 cm.


Assuntos
Colo Sigmoide/patologia , Colo Sigmoide/cirurgia , Tratamento Conservador , Diverticulite/patologia , Diverticulite/cirurgia , Qualidade de Vida , Doença Aguda , Adulto , Idoso , Idoso de 80 Anos ou mais , Colo Sigmoide/diagnóstico por imagem , Diverticulite/classificação , Diverticulite/diagnóstico por imagem , Documentação , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Inquéritos e Questionários , Fatores de Tempo , Tomografia Computadorizada por Raios X , Adulto Jovem
14.
PLoS Negl Trop Dis ; 12(1): e0006219, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-29377890

RESUMO

BACKGROUND: Leprosy is a condition that has long been associated with stigma and discrimination, even when infected persons have been cured. This paper describes stigma and discrimination as viewed by caregivers who are associated with people affected by leprosy in Ghana. METHODS: A qualitative interview with semi-structured interviews were conducted for twenty caregivers. RESULTS: Findings indicated that caregivers were of the view that people affected by leprosy in Ghana are stigmatized and discriminated against by the larger society thus making their movements and interactions restricted to the Leprosarium. Besides, employments opportunities are unavailable to them thus making them exposed to financial challenges. The livelihood Empowerment Against poverty (LEAP) money given them is not sufficient for their daily upkeep. CONCLUSION: People affected by leprosy in Ghana are stigmatized and therefore find it difficult to interact freely with the public. The associated physical deformities with the disease also tend to impede their ability to relate to the general public. The LEAP cash given to people affected by leprosy is helpful however, it could be enhanced to keep pace with prevailing economic conditions in the country.


Assuntos
Cuidadores/psicologia , Discriminação Psicológica , Hanseníase/psicologia , Estigma Social , Adolescente , Adulto , Idoso , Feminino , Gana , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Adulto Jovem
15.
Rev. bras. enferm ; 71(supl.1): 660-667, 2018.
Artigo em Inglês | LILACS, BDENF | ID: biblio-898455

RESUMO

ABSTRACT 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.


RESUMEN Objetivo: Analizar la interferencia de la lepra en la vida de mujeres en relación al trabajo y las actividades de la vida diaria. Método: Estudio cualitativo exploratorio desarrollado a partir de entrevistas semiestructuras y con el uso de diario de campo. La estrategia de organización de los datos fue el análisis temático de contenido y referencial del proceso de trabajo en salud y género. Resultados: Los temas presentados son: "Los dolores de la lepra", "Cambios con la enfermedad y adaptaciones en el trabajo y en las actividades" y "Ser mujer con lepra". En ellos, presentamos los aspectos que cambiaron en la vida de las mujeres a partir de la lepra, especialmente con relación al trabajo y a las actividades diarias. Además de la limitación física, hay impactos en las relaciones sociales y sobre todo en el trabajo formal, con posibilidad incluso de dimisión. Consideraciones finales: En mujeres contagiadas por la lepra, el trabajo y las actividades diarias son directamente afectados, lo que profundiza las dificultades sociales y requiere atención de los profesionales de la salud.


RESUMO Objetivo: Analisar a interferência da hanseníase na vida de mulheres em relação ao trabalho e atividades de vida diária. Método: Estudo qualitativo exploratório desenvolvido a partir de entrevistas semiestruturadas e com uso de diário de campo. A estratégia de organização dos dados foi análise temática de conteúdo e referencial do processo de trabalho em saúde e gênero. Resultados: Os temas apresentados são: "As dores da hanseníase", "Mudanças com a doença e adaptações no trabalho e nas atividades" e "Ser mulher com hanseníase". Neles, apresentamos os aspectos que mudaram na vida das mulheres a partir da hanseníase, especialmente com relação ao trabalho e às atividades diárias. Além da limitação física, há impactos nas relações sociais e sobretudo no trabalho formal, podendo haver inclusive demissão. Considerações finais: Em mulheres acometidas pela hanseníase, o trabalho e as atividades diárias são diretamente afetados; isso aprofunda as dificuldades sociais e requer atenção dos profissionais de saúde.


Assuntos
Humanos , Feminino , Adulto , Idoso , Trabalho/psicologia , Hanseníase/complicações , Trabalho/normas , Saúde Pública/métodos , Entrevistas como Assunto/métodos , Efeitos Psicossociais da Doença , Pesquisa Qualitativa , Estigma Social , Hanseníase/psicologia , Pessoa de Meia-Idade
16.
São Paulo; s.n; 2017. 102 p.
Tese em Português | LILACS | ID: biblio-879290

RESUMO

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


Assuntos
Humanos , Feminino , Hanseníase , Percepção , Isolamento Social , Mulheres/psicologia , Atividades Cotidianas , Relações Interpessoais , Entrevistas como Assunto , Estigma Social
17.
PLoS Negl Trop Dis ; 10(4): e0004644, 2016 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-27124408

RESUMO

BACKGROUND: This study is about the contribution of occupational therapy inside a rehabilitation group, and we focus on the autonomy of patients with disabilities due to leprosy. There are few studies on the use of assistive technology by leprosy patients; to our knowledge, none of them aim to have a subjective approach of care. Our purpose was to analyze the repercussions of assistive technology on autonomy of care of the self in patients with sequels of leprosy. METHODS: A qualitative, descriptive exploratory study with a semi-structured interview and a field observation as a research method was conducted between November 2014 and February 2015 at a University Hospital in Rio de Janeiro. FINDINGS: Eight patients from the service of Occupational Therapy were interviewed, and 44 hours of observation were performed. Interviews followed a semi-structured script and a field journal was used to take notes. Analysis was conducted by the hermeneutic approach. Costs were obtained after a global cost analysis of the fixed and variable expenses and direct and indirect costs to the manufactured products with an amount of 100 dollars. Results were grouped according to the following categories: contribution of the adapted devices for the care of the self and feelings and sensations provoked by the use of self-help devices. The reports revealed feelings, perceptions and meaningful contents about the social, familiar and individual dimensions, also the stigma coupled with leprosy. However, forms of re-signification were elaborated. CONCLUSIONS: Assistive technology empowers the subject to perform care of the self and promotes social inclusion.


Assuntos
Pessoas com Deficiência , Hanseníase/terapia , Autocuidado/métodos , Equipamentos de Autoajuda , Humanos , Entrevistas como Assunto , Hanseníase/psicologia , Isolamento Social
18.
PLoS Negl Trop Dis ; 8(6): e2940, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-24901307

RESUMO

BACKGROUND: There are various factors which construct the perception of stigma in both leprosy affected persons and unaffected persons. The main purpose of this study was to determine the level of perceived stigma and the risk factors contributing to it among leprosy affected person attending the Green Pastures Hospital, Pokhara municipality of western Nepal. METHODS: A cross-sectional study was conducted among 135 people affected by leprosy at Green Pastures Hospital and Rehabilitation Centre. Persons above the age of 18 were interviewed using a set of questionnaire form and Explanatory Model Interview Catalogue (EMIC). In addition, two sets of focused group discussions each containing 10 participants from the ward were conducted with the objectives of answering the frequently affected EMIC items. RESULTS: Among 135 leprosy affected persons, the median score of perceived stigma was 10 while it ranged from 0-34. Higher perceived stigma score was found in illiterate persons (p=0.008), participants whose incomes were self-described as inadequate (p=0.014) and who had changed their occupation due to leprosy (p=0.018). Patients who lacked information on leprosy (p=0.025), knowledge about the causes (p=0.02) and transmission of leprosy (p=0.046) and those who had perception that leprosy is a severe disease (p<0.001) and is difficult to treat (p<0.001) had higher perceived stigma score. Participants with disfigurement or deformities (p=0.014), ulcers (p=0.022) and odorous ulcers (p=0.043) had higher perceived stigma score. CONCLUSION: The factors associated with higher stigma were illiteracy, perceived economical inadequacy, change of occupation due to leprosy, lack of knowledge about leprosy, perception of leprosy as a severe disease and difficult to treat. Similarly, visible deformities and ulcers were associated with higher stigma. There is an urgent need of stigma reduction strategies focused on health education and health awareness programs in addition to the necessary rehabilitation support.


Assuntos
Hanseníase/psicologia , Estigma Social , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Nepal , Fatores de Risco , Adulto Jovem
19.
BMC Health Serv Res ; 14: 81, 2014 Feb 21.
Artigo em Inglês | MEDLINE | ID: mdl-24559177

RESUMO

BACKGROUND: Ambulatory, community-based care for multi-drug resistant tuberculosis (MDR-TB) has been found to be effective in multiple settings with high cure rates. However, little is known about patient preferences around models of MDR-TB care. Médecins Sans Frontières (MSF) has delivered home-based MDR-TB treatment in the rural Kitgum and Lamwo districts of northern Uganda since 2009 in collaboration with the Ministry of Health and the National TB and Leprosy Programme. We conducted a qualitative study examining the experience of patients and key stakeholders of home-based MDR-TB treatment. METHODS: We used semi-structured interviews and focus-group discussions to examine patients' perceptions, views and experiences of home-based treatment and care for MDR-TB versus their perceptions of care in hospital. We identified how these perceptions interacted with those of their families and other stakeholders involved with TB. Participants were selected purposively following a stakeholder analysis. Sample size was determined by data saturation being reached within each identified homogenous category of respondents: health-care receiving, health-care providing and key informant. Iterative data collection and analysis enabled adaptation of topic guides and testing of emerging themes. The grounded theory method of analysis was applied, with data, codes and categories being continually compared and refined. RESULTS: Several key themes emerged: the perceived preference and acceptability of home-based treatment and care as a model of MDR-TB treatment by patients, family, community members and health-care workers; the fear of transmission of other infections within hospital settings; and the identification of MDR-TB developing through poor adherence to and inadequate treatment regimens for DS-TB. CONCLUSIONS: Home-based treatment and care was acceptable to patients, families, communities and health-care workers and was seen as preferable to hospital-based care by most respondents. Home-based care was perceived as safe, conducive to recovery, facilitating psychosocial support and allowing more free time and earning potential for patients and caretakers. These findings could contribute to development of an adaptation of treatment approach strategy at national level.


Assuntos
Assistência Centrada no Paciente/métodos , Tuberculose Resistente a Múltiplos Medicamentos/terapia , Adolescente , Adulto , Idoso , Antituberculosos/uso terapêutico , Feminino , Grupos Focais , Serviços de Assistência Domiciliar , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Preferência do Paciente , Satisfação do Paciente , Pesquisa Qualitativa , Tuberculose Resistente a Múltiplos Medicamentos/tratamento farmacológico , Uganda , Adulto Jovem
20.
J Korean Acad Nurs ; 44(6): 639-48, 2014 Dec.
Artigo em Coreano | MEDLINE | ID: mdl-25608542

RESUMO

PURPOSE: The purpose of this study was to identify life experiences of Korean patients with Hansen's disease (leprosy). METHODS: For this study, 5 participants from Sorok Island Hospital were purposively chosen. Data were collected through in-depth individual interviews from June to July 2014. Data analysis method was based on Colaizzi's approach. RESULTS: The study results showed that experiences of patients with Hansen's disease consisted of 14 themes and six theme clusters: 1) Bad disease approaching as fate; 2) Family breakup and far from the village; 3) New life in Sorok Island Hospital; 4) Treatment of Hansen's disease and disability; 5) Life in the disease community; 6) Comfort and hope of life. CONCLUSION: The findings of this study indicate that health care professionals should pay attention to patients with Hansen's disease not only to reduce their physical and psychological suffering, but also to help the community and public culture to reduce the social stigma surrounding this disease and causing suffering for the patients. The results of the present study can help us to have a better understanding of various aspects of patients' lived experiences.


Assuntos
Hanseníase/patologia , Acontecimentos que Mudam a Vida , Idoso , Relações Familiares , Feminino , Hospitais , Humanos , Entrevistas como Assunto , Masculino , República da Coreia , Inquéritos e Questionários
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