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1.
PLoS Negl Trop Dis ; 16(1): e0010132, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-35061673

RESUMO

BACKGROUND: Lower limb disorders including lymphoedema create a huge burden for affected persons in their physical and mental health, as well as socioeconomic and psychosocial consequences for them, their families and communities. As routine health services for the integrated management and prevention of lower limb disorders are still lacking, the 'Excellence in Disability Prevention Integrated across Neglected Tropical Diseases' (EnDPoINT) study was implemented to assess the development and delivery of an integrated package of holistic care-including physical health, mental health and psychosocial care-within routine health services for persons with lower limb disorders caused by podoconiosis, lymphatic filariasis and leprosy. METHODOLOGY/PRINCIPAL FINDINGS: This study was part of the first of three phases within EnDPoINT, involving the development of the integrated care package. Focus group discussions and key informant interviews were undertaken with 34 participants between January-February 2019 in Awi zone, Ethiopia, in order to assess the draft care package's feasibility, acceptability and appropriateness. Persons affected by lower limb disorders such as lymphoedema experience stigma, exclusion from families, communities and work as well as physical and financial hardship. Beliefs in disease causation inhibit affected persons from accessing care. Ignorance was a barrier for health care providers as well as affected persons. Training and education of affected persons, communities and caregivers is important in improving care access. It also requires time, space, materials and financial resources. Both top-down and grass roots input into service development are key, as well as collaboration across stakeholders including charities, community leaders and "expert patients". CONCLUSIONS/SIGNIFICANCE: This study highlighted the need for the EnDPoINT integrated care package and provided suggestions for solutions according to its three aspects of integrated care (integration into routine care; integration of mental health and psychosocial care; and integration of care across the three diseases), thereby giving support for its feasibility, acceptability and appropriateness.


Assuntos
Prestação Integrada de Cuidados de Saúde/métodos , Filariose Linfática/epidemiologia , Elefantíase/epidemiologia , Hanseníase/epidemiologia , Linfedema/psicologia , Adulto , Elefantíase/psicologia , Elefantíase/terapia , Filariose Linfática/psicologia , Filariose Linfática/terapia , Etiópia/epidemiologia , Feminino , Grupos Focais , Serviços de Saúde , Saúde Holística , Humanos , Hanseníase/psicologia , Hanseníase/terapia , Extremidade Inferior/patologia , Linfedema/epidemiologia , Linfedema/terapia , Masculino , Pessoa de Meia-Idade , Reabilitação Psiquiátrica , Estigma Social , Adulto Jovem
2.
PLoS Negl Trop Dis ; 15(8): e0009654, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-34424909

RESUMO

INTRODUCTION: Since ancient times leprosy has had a negative perception, resulting in stigmatization. To improve the lives of persons affected by leprosy, these negative perceptions need to change. The aim of this study is to evaluate interventions to change perceptions and improve knowledge of leprosy. METHODOLOGY/PRINCIPAL FINDINGS: We conducted a pre-post intervention study in Fatehpur and Chandauli districts, Uttar Pradesh, India. Based on six steps of quality intervention development (6SQuID) two interventions were designed: (1) posters that provided information about leprosy and challenged misconceptions, and (2) meetings with persons affected by leprosy, community members and influential people in the community. The effect of the interventions was evaluated in a mixed-methods design; in-depth interviews, focus group discussions, and questionnaires containing a knowledge measure (KAP), two perception measures (EMIC-CSS, SDS) and an intervention evaluation tool. 1067 participants were included in Survey 1 and 843 in Survey 2. The interventions were effective in increasing knowledge of all participant groups, and in changing community and personal attitudes of close contacts and community members (changes of 19%, 24% and 13% on the maximum KAP, EMIC-CSS and SDS scores respectively, p<0.05). In Survey 1, 13% of participants had adequate knowledge of leprosy versus 53% in Survey 2. Responses showed stigmatizing community attitudes in 86% (Survey 1) and 61% (Survey 2) of participants and negative personal attitudes in 37% (Survey 1) and 19% (Survey 2). The number of posters seen was associated with KAP, EMIC-CSS and SDS scores in Survey 2 (p<0.001). In addition, during eight post-intervention focus group discussions and 48 interviews many participants indicated that the perception of leprosy in the community had changed. CONCLUSIONS/SIGNIFICANCE: Contextualized posters and community meetings were effective in changing the perception of leprosy and in increasing leprosy-related knowledge. We recommend studying the long-term effect of the interventions, also on behavior.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Hanseníase/epidemiologia , Hanseníase/psicologia , Percepção Social , Adulto , Feminino , Grupos Focais , Humanos , Índia/epidemiologia , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Análise de Regressão , Estigma Social , Inquéritos e Questionários , Adulto Jovem
3.
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
4.
Glob Public Health ; 16(12): 1856-1869, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-33253049

RESUMO

ABSTRACTThis study explored the possibility of a common health-related stigma reduction intervention among people living with HIV, leprosy, schizophrenia and diabetes in Indonesia by assessing their perspectives towards others with the same (within group) and different health conditions (across groups), and willingness to participate in such a program. This mixed-methods study was conducted in West Java, Indonesia between March and June 2018. Eighty participants completed a survey with social distance scale (SDS), while 12 focus group discussion were conducted. Participants with HIV, leprosy and diabetes reported lower within-group SDS scores (4.14 ± 3.65; 4.25 ± 3.95; 7.23 ± 5.31, respectively) while those with schizophrenia reported the highest within-group SDS score (7.76 ± 4.63). Participants with diabetes reported a twofold higher across-group SDS score towards people with the other three health conditions (p < 0.05). The qualitative findings showed that the perception of participants towards one another was shaped by knowledge, understanding and relatedness to the experience of living with health-related stigma. Overall, participants supported the idea of a common stigma reduction intervention for different health conditions, but recommended step-wise implementation of such interventions. Accordingly, this study recommends piloting a common stigma reduction intervention with special focus on fostering understanding, awareness and empathy between people living with different health conditions.


Assuntos
Infecções por HIV , Hanseníase , Grupos Focais , Humanos , Indonésia , Estigma Social , Inquéritos e Questionários
5.
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
6.
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
7.
PLoS One ; 13(6): e0199474, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29940012

RESUMO

BACKGROUND: Tuberculosis is a major public health problem in Liberia. According to the World Health Organization (WHO), the incidence of tuberculosis in Liberia is significantly increasing from year to year. However, little is known about the performance of the programme and the challenges after the 14 years of civil war which ended in 2003.The purpose of the study was to evaluate the performance of the TB programme of Liberia. METHODS: The study utilised mixed research design; both quantitative and qualitative methods were used in this study conducted from 2013 to 2014. For the quantitative part of the study, a questionnaire, laboratory performance and eleven years TB programme data (2003-2013) were used. For the performance of tuberculosis laboratory testing, all the 107 functional tuberculosis microscopy centers in Liberia were included. For the qualitative part of the study, an interview of 10 informants and two focus group discussions (FGDs) were also conducted, each comprising of eight people. Themes and subthemes emerged from the two FGDs. Data was analysed in line with the Donabedian model. Quantitative findings were analysed and presented using both descriptive and inferential statistics. RESULTS: The study findings pointed out that there was overall improvement in the performance of the tuberculosis control programme in Liberia from 2003 to 2013. The percentage of cured patients was 60% in 2005 and 62% in 2013. Percentage of treatment completed was 16% in 2005 and 21% in 2013. The case detection rate was 57% and treatment success rate 80% in 2013. The default rate was 11% in 2013. Of the 139 participants, 120 (86%) completed TB treatment while 19 (14%) did not. CONCLUSION: Between 2003 and 2013, the National Leprosy and Tuberculosis Control Programme (NLTCP) succeeded in restoring the TB services and improving some of the TB treatment outcomes including the Directly observed treatment short courses(DOTS) coverage. Despite these improvements, the TB treatment, laboratory services and human resource capacity lagged behind. The TB programme of Liberia needs to develop new strategies to address its challenges.


Assuntos
Conflitos Armados , Promoção da Saúde , Tuberculose/prevenção & controle , Adolescente , Adulto , Idoso , Coinfecção/epidemiologia , Feminino , Grupos Focais , Humanos , Hanseníase/prevenção & controle , Libéria/epidemiologia , Masculino , Pessoa de Meia-Idade , Prevalência , Avaliação de Programas e Projetos de Saúde , Resultado do Tratamento , Tuberculose/epidemiologia , Adulto Jovem
8.
Fontilles, Rev. leprol ; 30(1): 31-43, ene.-abr. 2015.
Artigo em Espanhol | IBECS | ID: ibc-139973

RESUMO

La lepra, aunque actualmente está desapareciendo, no ha sido derrotada todavía en Surinam. En la época colonial fue un gran problema para el gobierno colonial y la población, siendo la mayoría de pacientes (en la época pre-abolicionista) esclavos. En el siglo XVIII se estableció un sistema de control que ya incluía la en la legislación la detección y el confinamiento como métodos importantes. Los médicos holandeses que ejercían en Surinam durante el siglo XVIII y primera mitad del siglo XIX propusieron modelos contagionistas de contención que sugieren que la lepra era causada por una mezcla de factores, siendo la infección uno de ellos. Pero durante la primera mitad del siglo XIX, los investigadores europeos rechazaron mayoritariamente la infección y prevaleció el anti-contagionismo, considerando la herencia y los factores medioambientales como su causa. Al mismo tiempo, en Surinam - puesto que la lepra estaba incontrolada - la lucha contra la lepra se reforzó promulgando leyes implacables para perseguir e identificar a los leprosos. A su vez, Charles Louis Drognat-Landré defendió el punto de vista (tesis Utrecht) de que solamente la infección es la causa de la lepra. Su argumento sobre el contagionismo fue rechazado en Holanda, pero posteriormente publicó sus ideas en francés y así llegaron a ser más conocidas internacionalmente e influyeron en el noruego Hansen. Este descubrió algunos años después el microorganismo causal. Se afirma que hay una relación entre el desarrollo de una forma de contagionismo típico surimanés, un sistema de control de la lepra brutal y la estructura política autocrática, no liberal (hacia los esclavos) de la colonia holandesa de Surinam


Leprosy is nowadays a disappearing but not yet defeated disease in Suriname. In colonial times it was a burden for colonial government and people, the majority of patients (in preabolition times) being slaves. In the 18th century a control system was established, with detection and isolation, anchored in legislation, as major methods. Dutch physicians working in Suriname in the 18th and first half of the 19th century proposed contingent contagionistic models, according to which leprosy was caused by a mixture of factors, infection being one of them. But in the first half of the 19th century European researchers generally denied infection as the cause of leprosy and the paradigm of anti-contagionism prevailed, considering heredity and environmental factors as its cause. At the same time in Suriname - because leprosy appeared uncontrollable - the fight against the disease was reinforced by promulgating more relentless laws to hunt and identify lepers. In line with this, the Suriname born Charles Louis Drognat-Landré defended the view (thesis Utrecht) that infection is the one and only cause of leprosy. His extreme contagionism was sharply rejected in The Netherlands, but then he published his ideas in French and so could reach the international scene and influence the Norwegian Hansen. The latter discovered the culpable micro-organism a few years later. We claim a correlation between the development of a typical Surinamese form of contagionism, the brutal leprosy control system and the autocratic, non-liberal (towards the slaves) political structure of the Dutch colony Suriname


Assuntos
Feminino , Humanos , Masculino , Hanseníase Virchowiana/metabolismo , Hanseníase Virchowiana/transmissão , Suriname/etnologia , Escravização/etnologia , Escravização/história , História do Século XIX , Saúde Pública/economia , Saúde Pública , Grupos Focais/métodos , Hanseníase Virchowiana/complicações , Hanseníase Virchowiana/diagnóstico , Suriname/epidemiologia , Escravização/economia , Escravização/psicologia , Saúde Pública/legislação & jurisprudência , Saúde Pública/estatística & dados numéricos , Grupos Focais
9.
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
10.
J Health Popul Nutr ; 31(4): 424-34, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-24592583

RESUMO

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


Assuntos
Doenças Transmissíveis/epidemiologia , Doenças Transmissíveis/transmissão , Relações Interpessoais , Comportamento Social , Adolescente , Adulto , Distribuição por Idade , Idoso , Bangladesh/epidemiologia , Escolaridade , Feminino , Grupos Focais , Hinduísmo , Humanos , Islamismo , Hanseníase/epidemiologia , Hanseníase/transmissão , Masculino , Pessoa de Meia-Idade , População Rural/estatística & dados numéricos , Distribuição por Sexo , Tuberculose/epidemiologia , Tuberculose/transmissão , População Urbana/estatística & dados numéricos , Adulto Jovem
11.
Afr Health Sci ; 12(2): 231-9, 2012 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-23056033

RESUMO

BACKGROUND: Stigma has been associated with chronic health conditions such as HIV/AIDS, leprosy, tuberculosis, Mental illness and Epilepsy. Different forms of stigma have been identified: enacted stigma, perceived stigma, and self stigma. Stigma is increasingly regarded as a key driver of the HIV/AIDS epidemic and has a major impact on public health interventions. OBJECTIVES: The initiative was to provide activities in the clinic while patients waited to be seen by healthcare professionals. It was envisaged this would contribute to reduction of clinic based stigma felt by clients. METHODS: This was a repeated cross-sectional survey (October-November 2005 and March-April 2007) that was conducted at the Infectious Diseases Institute clinic (IDC) at Mulago, the national referral hospital in Uganda. We utilized quantitative (survey) and qualitative (key informants, focus group discussions) methods to collect the data. Data were collected on stigma before the creativity initiative intervention was implemented, and a second phase survey was conducted to assess effectiveness of the interventions. RESULTS: Clients who attended the IDC before the creativity intervention were about twice as likely to fear catching an infection as those who came after the intervention. The proportion that had fears to be seen by a friend or relative at the clinic decreased. Thus during the implementation of the Creativity intervention, HIV related stigma was reduced in this clinic setting. CONCLUSIONS: The creativity intervention helped to build self esteem and improved communication among those attending the clinic; there was observed ambiance at the clinic and clients became empowered, with creative, communication and networking skills. Improved knowledge and communication are key in addressing self stigma among HIV positive individuals.


Assuntos
Infecções por HIV/psicologia , Educação em Saúde/métodos , Conhecimentos, Atitudes e Prática em Saúde , Rede Social , Estigma Social , Estereotipagem , Adulto , Instituições de Assistência Ambulatorial , Atitude do Pessoal de Saúde , Criatividade , Estudos Transversais , Feminino , Grupos Focais , Hospitais , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Encaminhamento e Consulta , Autoimagem , Distribuição por Sexo , Fatores Socioeconômicos , Uganda
12.
Lepr Rev ; 83(2): 205-17, 2012 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-22997697

RESUMO

This paper presents a record of a focus group discussion that took place in Nyapyitaw, Myanmar in December 2010. Those contributing to the focus group discussion were senior post holders in the National Leprosy Control Programme (NLCP), Myanmar. The Myanmar programme had been targeted for further enquiry after it became apparent, through an earlier survey of national programme managers and consultants, that the programme had been relatively successful in the measures taken to facilitate the integration of POD into the government health delivery programme. The experience gained by the NLCP, Myanmar was recorded and is offered here as an example of how POD can be successfully developed by a government leprosy control programme to become integral to general health delivery.


Assuntos
Atenção à Saúde/organização & administração , Programas Governamentais/organização & administração , Hanseníase/complicações , Hanseníase/reabilitação , Grupos Focais , Humanos , Mianmar , Educação de Pacientes como Assunto , Autocuidado , Fatores Socioeconômicos
14.
Lepr Rev ; 82(2): 147-54, 2011 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-21888139

RESUMO

If it can be argued that no single attribute or condition (leprosy included) is inherently or universally considered to be 'deeply discrediting,' to quote Goffman, then we must consider how external factors shape stigma associated with that condition in different cultural and socioeconomic contexts. Often, an analysis of what is perceived to be stigma towards people affected by leprosy uncovers other prejudices or stigmatising attitudes associated with class, gender, and/or ethnic inequalities in that society. The movement of people across international borders adds new dimensions to the experience of leprosy, as affected individuals confront different sets of understandings of the disease among healthcare professionals, friends, family, and employers in host and sending countries. Preconceptions of the immigrant 'other' in host countries may be bound up with notions of disease and danger, further complicating the experience of leprosy treatment for immigrants. Drawing on the work of others and on early stage qualitative research on leprosy among Brazilian immigrants to the United States, this paper will consider the ways in which immigration and transnational processes could affect the experience of stigma among immigrants affected by leprosy.


Assuntos
Emigração e Imigração , Hanseníase/psicologia , Preconceito , Estereotipagem , Idoso , Brasil/etnologia , Discriminação Psicológica , Grupos Focais , Humanos , Hanseníase/etnologia , Masculino , México/etnologia , Pessoa de Meia-Idade , Percepção Social , Estados Unidos , Vietnã/etnologia , Trabalho
15.
Lepr Rev ; 82(2): 178-87, 2011 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-21888142

RESUMO

OBJECTIVES: Chemoprophylaxis with single dose rifampicin is a promising intervention to prevent leprosy in close contacts of patients. However, application in control programmes often requires disclosure of the leprosy diagnosis, which is still a stigmatised disease in many countries. Promoting control and treatment of stigmatised diseases without contributing towards stigma of the individuals involved can be very difficult. The objective of this study was to assess the social acceptability of disclosure of the diagnosis and the attitude towards taking prophylactic medicines in a leprosy endemic area in Bangladesh. DESIGN: Qualitative study through focus group discussions with 136 healthy men and women from different age groups and religions, coming from two rural villages and an urban area in northwest Bangladesh, and 14 health workers with extensive experience with leprosy patients. RESULTS: The participants would not object to disclosure of the diagnosis to household members and nearby family if they were diagnosed with leprosy. However, many participants were not willing to share this information with their neighbours and other social contacts due to stigma of the disease. All healthy participants were willing to take chemoprophylaxis if any of their close contacts were diagnosed with leprosy, even after explaining that full protection against leprosy was not guaranteed. CONCLUSION: It can be concluded that chemoprophylaxis for household contacts of leprosy patients is an effective and socially acceptable addition to the current leprosy control programme. Chemoprophylaxis for other categories of contacts likely to benefit would only be feasible, without disclosure of patient information, if given in the form of mass campaigns for the whole population in the area.


Assuntos
Hansenostáticos/uso terapêutico , Hanseníase/prevenção & controle , Rifampina/uso terapêutico , Adolescente , Adulto , Bangladesh/epidemiologia , Características da Família , Feminino , Grupos Focais , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Hanseníase/epidemiologia , Masculino , Aceitação pelo Paciente de Cuidados de Saúde , Preconceito , Pesquisa Qualitativa , Estereotipagem , Revelação da Verdade , Adulto Jovem
16.
Lepr Rev ; 81(3): 196-205, 2010 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-21067060

RESUMO

UNLABELLED: This is the second part of a study conducted to evaluate the decentralisation of leprosy control activities in Betim, Minas Gerais, Brazil. OBJECTIVES: To identify factors which hindered or facilitated the decentralisation of leprosy control activities in Betim municipality and to evaluate the quality of care after decentralisation. DESIGN: The study comprised a 2 1/2 hour focus group discussion with 10 professionals who participated in the decentralisation process. The group included health service managers and professionals from different backgrounds and types of health services involved in leprosy control. RESULTS: The following factors were identified as having hindered decentralisation: staff attitude, lack of staff training, stigma and health system organisation and management. The facilitating factors were: staff training in Betim, existence of a Municipal Reference Centre. The group considered that quality of care improved after decentralisation. CONCLUSIONS: The problems identified cannot be addressed with simple, immediate solutions. They require coordination with partners both within and outside the municipal health secretariat. Ongoing staff training is essential and should be done using existing expertise in the municipality. An easily accessible reference centre is important as a place for training and backup for newly trained professionals.


Assuntos
Atitude do Pessoal de Saúde , Atenção à Saúde/organização & administração , Pessoal de Saúde/educação , Hanseníase/prevenção & controle , Política , Brasil/epidemiologia , Doenças Endêmicas , Feminino , Grupos Focais , Humanos , Hanseníase/diagnóstico , Hanseníase/epidemiologia , Masculino
17.
Cad Saude Publica ; 25(4): 857-67, 2009 Apr.
Artigo em Português | MEDLINE | ID: mdl-19347212

RESUMO

This article reflects on the communications processes in the Hansen Disease Control Programs under the Unified National Health System (SUS) in Brazil, analyzing how professionals at two public health services in Rio de Janeiro perceive the educational materials on the disease. The article discusses how analysis of printed materials favors negotiation of prevailing meanings and practices on Hansen disease in the programs. Thirty-eight different educational materials were analyzed (produced from 1993 to 2005 by governmental and nongovernmental institutions) through two focus groups with program staff. Six materials were examined during the focus groups. The findings showed the communications processes are vertical and fragmented, with an emphasis on campaigns, centralized production of materials, homogenization of target publics, and a focus on biomedical knowledge. Horizontal and participatory activities were uncommon. A gap was identified between the institutionalization of the discourse on Hansen disease as an alternative to leprosy terminology and its circulation and uptake among different social actors.


Assuntos
Educação em Saúde/métodos , Pessoal de Saúde , Hanseníase , Saúde Pública , Materiais de Ensino/normas , Brasil , Grupos Focais , Humanos , Programas Nacionais de Saúde , Folhetos
18.
Cad. saúde pública ; 25(4): 857-867, abr. 2009. ilus
Artigo em Português | LILACS | ID: lil-509769

RESUMO

O artigo objetiva refletir sobre os processos comunicativos de Programas de Controle de Hanseníase (PCH) do Sistema Único de Saúde (SUS), por meio da análise da recepção de materiais educativos por profissionais de dois serviços de saúde pública no Rio de Janeiro, Brasil. O trabalho discute em que medida a análise de impressos favorece a negociação dos sentidos e das práticas sobre hanseníase vigentes nos PCH. Foram analisados 38 materiais produzidos entre 1993 a 2005, por instituições governamentais e não-governamentais e realizados dois grupos focais com profissionais atuantes no PCH. Durante os grupos focais 6 materiais foram examinados. Os resultados revelaram a verticalidade e fragmentação nos processos comunicativos, expressas pela: ênfase em campanhas, produção centralizada, homogeneização dos públicos e conteúdos e privilégio dado ao saber biomédico. As atividades horizontais e participativas não eram comuns. Foi identificada uma lacuna entre a institucionalização do discurso da hanseníase, como alternativa à terminologia da lepra, e a sua circulação e consumo entre os diferentes atores sociais.


This article reflects on the communications processes in the Hansen Disease Control Programs under the Unified National Health System (SUS) in Brazil, analyzing how professionals at two public health services in Rio de Janeiro perceive the educational materials on the disease. The article discusses how analysis of printed materials favors negotiation of prevailing meanings and practices on Hansen disease in the programs. Thirty-eight different educational materials were analyzed (produced from 1993 to 2005 by governmental and nongovernmental institutions) through two focus groups with program staff. Six materials were examined during the focus groups. The findings showed the communications processes are vertical and fragmented, with an emphasis on campaigns, centralized production of materials, homogenization of target publics, and a focus on biomedical knowledge. Horizontal and participatory activities were uncommon. A gap was identified between the institutionalization of the discourse on Hansen disease as an alternative to leprosy terminology and its circulation and uptake among different social actors.


Assuntos
Humanos , Pessoal de Saúde , Educação em Saúde/métodos , Hanseníase , Saúde Pública , Materiais de Ensino/normas , Brasil , Grupos Focais , Programas Nacionais de Saúde , Folhetos
19.
Disabil Rehabil ; 29(9): 689-700, 2007 May 15.
Artigo em Inglês | MEDLINE | ID: mdl-17453991

RESUMO

PURPOSE: The purpose of this study was to develop and validate a method of measuring activity limitation in leprosy and diabetes. The resulting questionnaire should be quick and simple to use in basic clinical settings, not require any testing skills or equipment, be validated across a number of cultures in order to be widely applicable, be relevant for anyone with long-standing peripheral neuropathy and be sensitive to changes in clients' capabilities. Because of impaired sensibility in hands or feet, persons affected by leprosy or diabetes are expected to be aware that many activities carry a risk of injury, particularly repetitive stress, excess pressure, friction or burns. They are expected to avoid these risky activities, or modify how they are carried out, in order to prevent injury. An additional aim of the study was therefore to find ways of assessing how far clients were aware of safety issues and how much they limited their activities voluntarily because of safety concerns. METHOD: Lists of activities of daily living relevant for the target populations were generated through individual interviews and focus group discussions. A questionnaire of 374 items was compiled and administered to 436 persons affected by leprosy and 132 affected by diabetes in five countries in four continents. A total of 76% of respondents had impairments. Occupational therapists not otherwise involved in this study gave an independent assessment of the degree of activity limitation of 207 respondents. The process of item selection from this database is presented step by step. Items for the SALSA scale were practised by at least 70% of respondents in all participating populations, were easy to perform for some but difficult for others, correlated well with the assessment of independent practitioners and had good item-total correlation. The present set of 20 items is well represented by a single principal component and had a high scale reliability coefficient. RESULTS: On a 20-item scale, one would expect a score of 20 if the respondents practiced all the activities listed without difficulty. Higher scores reflect increasing activity limitation. The SALSA score varied from 10 to 75 with a mean of 32. The distribution of the scores was not different between men and women or between disease groups. There was a consistent increase of the SALSA score with age and with the level of impairment. Compared to India and Nigeria, the average SALSA scores, adjusted for age and impairment level, were higher in Israel and Brazil, but lower in China. The spearman correlation coefficient between the SALSA scores and the scores assigned by the independent experts was 0.67. Among 23 respondents without overt disease, the SALSA score had a median of 19 and half the respondents scored between 18 and 20. CONCLUSIONS: The present research has resulted in the SALSA scale, a short questionnaire which can be administered within 10 min and which provides a standardized measure of activity limitation in clients with a peripheral neuropathy. It can be used to make comparisons between (groups of) individuals in different countries and in the same person (or group) over time. General health workers can use SALSA to screen clients and refer those with high scores to specialised services. In addition, the scale will assist service providers in designing appropriate interventions.


Assuntos
Atividades Cotidianas , Diabetes Mellitus/fisiopatologia , Hanseníase/fisiopatologia , Doenças do Sistema Nervoso Periférico/fisiopatologia , Segurança , Inquéritos e Questionários , Adolescente , Adulto , Fatores Etários , Conscientização , Diabetes Mellitus/epidemiologia , Avaliação da Deficiência , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Hanseníase/epidemiologia , Masculino , Programas de Rastreamento , Pessoa de Meia-Idade , Limitação da Mobilidade , Doenças do Sistema Nervoso Periférico/epidemiologia , Autocuidado , Trabalho
20.
World Health Popul ; 9(1): 14-23, 2007 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-18270497

RESUMO

This qualitative study explores socio-cultural and health systems factors that may impact on death reporting by lay people to registry systems at the commune level. Information on local perceptions of death and factors influencing death reporting were gathered through nine focus group discussions with people of different religions and ethnic affiliations in a rural district of northern Vietnam. Participants classified deaths as "elderly deaths," "young deaths," and "child deaths." Child deaths, including newborn deaths, used to be considered punishment for sins committed by ancestors, but this is no longer the case. Concepts of the human soul and afterlife differ between the Catholic and Buddhist groups, influencing funeral rituals and reporting, especially of infant deaths. Participants regarded elderly deaths as "natural" and "deserved," while young deaths were seen as either "good deaths" or "bad deaths." "Bad deaths" were defined as deaths of "dishonourable" persons who had led a "bad life" involving activities such as gambling, drinking or stealing. The causes of "bad deaths" and deaths due to stigmatized diseases (e.g., HIV/AIDS, tuberculosis and leprosy) were often concealed by the family. The study suggests that the risk of under-reporting deaths seems to be largest for deaths of infants and "bad deaths." Little awareness of regulations and lack of incentives for reporting or lack of sanctions for not reporting deaths also result in under-reporting of deaths. Therefore, education programs and enforcement of legal regulations on death notification should be emphasized. The risk of misreporting the real causes of "bad deaths" and deaths due to stigmatized diseases should be considered in verbal autopsy interviews. Using different sources of information (triangulation) is useful in order to minimize both under-registration and misreporting causes of death.


Assuntos
Atitude Frente a Morte/etnologia , Características Culturais , Atestado de Óbito , Fatores Etários , Feminino , Grupos Focais , Rituais Fúnebres , Humanos , Masculino , Preconceito , Religião , Vietnã/epidemiologia
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