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1.
PLoS Negl Trop Dis ; 17(10): e0011235, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37801432

RESUMEN

BACKGROUND: The Beach Center Family Quality of Life Scale has been developed and validated in different languages in different countries. However, this scale has not been validated in the Ethiopian Amharic language context. Therefore, this study aimed to investigate the cross-cultural validity of the Beach Center Family Quality of Life Scale, among Ethiopian families of persons affected by leprosy and podoconiosis. METHODOLOGY: We explored the semantic equivalence, internal consistency, reproducibility, floor and ceiling effects, and interpretability of the Beach Center Family Quality of Life Scale in Amharic. A cross-sectional study was conducted after the translation and back-translation of the instrument. A total of 302 adult persons affected by leprosy or podoconiosis was asked about their level of satisfaction with their family life, using the Beach Center Family Quality of Life Scale. In addition, 50 participants were re-interviewed two weeks after the initial assessment to test the reproducibility of the scale. Participants were recruited in the East Gojjam zone of Northwest Ethiopia. RESULTS: The findings of this study showed that the Beach Center Family Quality of Life Scale had high internal consistency (Cronbach's alpha of 0.913) and reproducibility (intra-class correlation coefficient of 0.857). The standard error of measurement was 3.01, which is 2.4% of the total score range. The smallest detectable change was 8.34. Confirmatory factor analysis showed adequate factor loadings and model fit indices like the original scale. The composite reliability and average variance extracted from the scale were acceptable. No floor and ceiling effects were found. CONCLUSIONS: Our findings indicate that the Amharic version of the Beach Center Family Quality of Life Scale has adequate cultural validity to assess the family quality of life in Ethiopian families of persons affected by leprosy and podoconiosis.


Asunto(s)
Elefantiasis , Lepra , Adulto , Humanos , Reproducibilidad de los Resultados , Calidad de Vida , Comparación Transcultural , Etiopía , Estudios Transversales , Encuestas y Cuestionarios , Psicometría
2.
PLoS One ; 14(12): e0223042, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31794554

RESUMEN

BACKGROUND: Many neglected tropical diseases (NTDs) are not fatal, but they are disabling, disfiguring and stigmatizing. More accurate data on these aspects would benefit planning, monitoring and evaluation of interventions, as well as provision of appropriate services for the often life-long consequences. In 2015, a cross-NTD toolkit was developed, consisting of a variety of existing questionnaires to measure morbidity, disability and health-related quality of life. The toolkit covers the domains of the International Classification of Functioning, Disability and Health (ICF) framework. These tools have been developed in a source country, however, it was intended for the cross-NTD toolkit to be applicable across NTDs in many countries with different cultures and languages in order to generate universally comparative data. Therefore; the present study aimed to validate several tools of the toolkit among people affected by leprosy or leishmaniasis in the cultural settings of Cartagena and Cúcuta, Colombia. METHODOLOGY: This study aimed to validate the following tools among 55 participants between 18-85 years old, affected by leprosy and leishmaniasis: (I) Clinical Profile, (II) Self-Reporting Questionnaire (SRQ), (III) WHO Quality of Life assessment-abbreviated version (WHOQOL-BREF), and (IV) WHO Quality of Life assessment-Disability (WHOQOL-DIS). The tools were administered during face-to-face interviews and were followed by open questions about the respondents' thoughts on format of the tool and the understanding, relevance and acceptability of the items. The tools were validated using a qualitative method approach based on the framework for cultural equivalence, measured by the cultural, item, semantic and operational equivalences. RESULTS: The Clinical Profile was seen as acceptable and relevant, only the semantic equivalence was not as satisfying and needs a few adaptations. The SRQ was very well understood and shows to reach the equivalences for the population of Colombia without any additional changes. Several items of the WHOQOL-BREF and the WHOQOL-DIS were not well understood and changes are recommended due to semantic difficulties. Operational equivalence of both questionnaires was not as desired in relation to the used response scales. The participants shared that the tools are relevant and important for their particular situation. CONCLUSIONS/SIGNIFICANCE: The SRQ is found to be a valid tool for Colombia and can be included in the cross-NTD toolkit. The Clinical Profile, WHOQOL-BREF & WHOQOL-DIS need changes and retesting among Colombian people affected by an NTD. The toolkit as a whole is seen as useful to show the effects leprosy and leishmaniasis have on the participants. This cultural validation will contribute to a universally applicable cross-NTD toolkit.


Asunto(s)
Enfermedades Desatendidas/diagnóstico , Psicometría/métodos , Adulto , Anciano , Anciano de 80 o más Años , Colombia , Comparación Transcultural , Femenino , Humanos , Leishmaniasis/diagnóstico , Lepra/diagnóstico , Masculino , Persona de Mediana Edad , Morbilidad , Enfermedades Desatendidas/mortalidad , Satisfacción Personal , Calidad de Vida , Reproducibilidad de los Resultados , Proyectos de Investigación , Autoinforme , Encuestas y Cuestionarios , Medicina Tropical
3.
Indian J Dermatol Venereol Leprol ; 84(4): 431-436, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-28485307

RESUMEN

BACKGROUND: Treatments for autoimmune blistering disease carry significant risks of medical complications and can affect the patient's quality of life. Recently, the Treatment of Autoimmune Bullous Disease Quality of Life questionnaire was developed in Australia. OBJECTIVE: The objective of this study was to evaluate the reliability and validity of the Chinese version of the Treatment of Autoimmune Bullous Disease Quality of Life questionnaire in Chinese patients with autoimmune blistering diseases. METHODS: The Chinese version of the Treatment of Autoimmune Bullous Disease Quality of Life questionnaire was produced by forward-backward translation and cross-cultural adaptation of the original English version. Autoimmune blistering disease patients recruited in the study self-administered the Chinese Treatment of Autoimmune Bullous Disease Quality of Life questionnaire, the Dermatology Life Quality Index and the 36-item Short-Form Health Survey. Reliability of the Chinese Treatment of Autoimmune Bullous Disease Quality of Life was evaluated using internal consistency and test-retest (days 0 and 7) methods. Validity was analyzed by face, content, construct, convergent and discriminant validity measures. RESULTS: A total of 86 autoimmune blistering disease patients were recruited for the study. Cronbach's alpha coefficient was 0.883 and the intraclass correlation coefficient was 0.871. Face and content validities were satisfactory. Convergent validity testing revealed correlation coefficients of 0.664 for the Treatment of Autoimmune Bullous Disease Quality of Life and Dermatology Life Quality Index and -0.577 for the Treatment of Autoimmune Bullous Disease Quality of Life and 36-item Short-Form Health Survey. With respect to discriminant validity, no significant differences were observed in the Treatment of Autoimmune Bullous Disease Quality of Life scores of men and women (t = 0.251, P = 0.802), inpatients and outpatients (t = 0.447, P = 0.656), patients on steroids and steroid-sparing medications (t = 0.672, P = 0.503) and patients with different autoimmune blistering disease subtypes (F = 0.030, P = 0.971). LIMITATIONS: Illiterate patients were excluded from the study. The patients were from a single hospital and most of their conditions were in a relatively stable status. CONCLUSION: The Chinese version of the Treatment of Autoimmune Bullous Disease Quality of Life questionnaire is a reliable and valid instrument to measure treatment burden and to serve as an end point in clinical trials in Chinese autoimmune blistering disease patients.


Asunto(s)
Enfermedades Autoinmunes/diagnóstico , Comparación Transcultural , Calidad de Vida , Enfermedades Cutáneas Vesiculoampollosas/diagnóstico , Encuestas y Cuestionarios/normas , Traducción , Adolescente , Adulto , Anciano , Enfermedades Autoinmunes/etnología , Enfermedades Autoinmunes/psicología , China/etnología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Proyectos Piloto , Calidad de Vida/psicología , Reproducibilidad de los Resultados , Autoinforme/normas , Enfermedades Cutáneas Vesiculoampollosas/etnología , Enfermedades Cutáneas Vesiculoampollosas/psicología , Adulto Joven
4.
Rev Saude Publica ; 51: 80, 2017 Sep 04.
Artículo en Inglés, Portugués | MEDLINE | ID: mdl-28876410

RESUMEN

OBJECTIVE: Describe the process of cross-cultural adaptation of the "Explanatory Model Interview Catalog - Stigma Scale" for people affected by leprosy in Brazil. METHODS: After being authorized by the author of the scale to use it in the national context, we initiated the five steps process of cross-cultural adaptation: (1) translation, (2) synthesis meeting, (3) back-translation, (4) committee of experts and (5) pre-test. The internal consistency of the scale was evaluated using Cronbach's alpha coefficient. RESULTS: The 15 items of the scale's original version were translated into Brazilian Portuguese. The adapted scale showed evidence of a good understanding of its content, attested both by experts and members of the target population. Its internal consistency was 0.64. CONCLUSIONS: The adapted instrument shows satisfactory internal consistency. It may be useful in future studies that intend to provide broad situational analysis that supports solid public health programs with a focus on effective stigma reduction. In a later study, the construct's validity, criterion, and reproducibility will be evaluated. OBJETIVO: Descrever o processo de adaptação transcultural da "Explanatory Model Interview Catalogue - Stigma Scale" para pessoas afetadas por hanseníase no Brasil. MÉTODOS: Após a autorização do autor da escala para seu uso no contexto nacional, deu-se início aos cinco passos do processo de adaptação transcultural: (1) tradução, (2) reunião de síntese, (3) retrotradução, (4) comitê de peritos e (5) pré-teste. A consistência interna da escala foi avaliada utilizando o coeficiente alfa de Cronbach. RESULTADOS: Os 15 itens da versão original da escala foram traduzidos para a língua portuguesa do Brasil. A escala adaptada apresentou evidência de boa compreensão de seu conteúdo, atestada tanto por peritos como por membros da população alvo. Sua consistência interna foi de 0,64. CONCLUSÕES: O instrumento adaptado apresenta consistência interna satisfatória. Pode ser útil em estudos futuros que intencionem viabilizar ampla análise situacional que sustente programas sólidos de saúde pública com enfoque na efetiva redução de estigma. Em estudo ulterior será avaliada a validade de constructo, critério e reprodutibilidade.


Asunto(s)
Comparación Transcultural , Lepra/psicología , Estigma Social , Encuestas y Cuestionarios , Adulto , Anciano , Brasil , Femenino , Humanos , Lenguaje , Masculino , Persona de Mediana Edad , Traducciones
5.
Artículo en Inglés | LILACS | ID: biblio-903230

RESUMEN

ABSTRACT OBJECTIVE Describe the process of cross-cultural adaptation of the "Explanatory Model Interview Catalog - Stigma Scale" for people affected by leprosy in Brazil. METHODS After being authorized by the author of the scale to use it in the national context, we initiated the five steps process of cross-cultural adaptation: (1) translation, (2) synthesis meeting, (3) back-translation, (4) committee of experts and (5) pre-test. The internal consistency of the scale was evaluated using Cronbach's alpha coefficient. RESULTS The 15 items of the scale's original version were translated into Brazilian Portuguese. The adapted scale showed evidence of a good understanding of its content, attested both by experts and members of the target population. Its internal consistency was 0.64. CONCLUSIONS The adapted instrument shows satisfactory internal consistency. It may be useful in future studies that intend to provide broad situational analysis that supports solid public health programs with a focus on effective stigma reduction. In a later study, the construct's validity, criterion, and reproducibility will be evaluated.


RESUMO OBJETIVO Descrever o processo de adaptação transcultural da "Explanatory Model Interview Catalogue - Stigma Scale" para pessoas afetadas por hanseníase no Brasil. MÉTODOS Após a autorização do autor da escala para seu uso no contexto nacional, deu-se início aos cinco passos do processo de adaptação transcultural: (1) tradução, (2) reunião de síntese, (3) retrotradução, (4) comitê de peritos e (5) pré-teste. A consistência interna da escala foi avaliada utilizando o coeficiente alfa de Cronbach. RESULTADOS Os 15 itens da versão original da escala foram traduzidos para a língua portuguesa do Brasil. A escala adaptada apresentou evidência de boa compreensão de seu conteúdo, atestada tanto por peritos como por membros da população alvo. Sua consistência interna foi de 0,64. CONCLUSÕES O instrumento adaptado apresenta consistência interna satisfatória. Pode ser útil em estudos futuros que intencionem viabilizar ampla análise situacional que sustente programas sólidos de saúde pública com enfoque na efetiva redução de estigma. Em estudo ulterior será avaliada a validade de constructo, critério e reprodutibilidade.


Asunto(s)
Humanos , Masculino , Femenino , Adulto , Anciano , Comparación Transcultural , Encuestas y Cuestionarios , Estigma Social , Lepra/psicología , Traducciones , Brasil , Lenguaje , Persona de Mediana Edad
6.
PLoS Negl Trop Dis ; 8(11): e3274, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-25376007

RESUMEN

BACKGROUND: Stigma plays in an important role in the lives of persons affected by neglected tropical diseases, and assessment of stigma is important to document this. The aim of this study is to test the cross-cultural validity of the Community Stigma Scale (EMIC-CSS) and the Social Distance Scale (SDS) in the field of leprosy in Cirebon District, Indonesia. METHODOLOGY/PRINCIPLE FINDINGS: Cultural equivalence was tested by assessing the conceptual, item, semantic, operational and measurement equivalence of these instruments. A qualitative exploratory study was conducted to increase our understanding of the concept of stigma in Cirebon District. A process of translation, discussions, trainings and a pilot study followed. A sample of 259 community members was selected through convenience sampling and 67 repeated measures were obtained to assess the psychometric measurement properties. The aspects and items in the SDS and EMIC-CSS seem equally relevant and important in the target culture. The response scales were adapted to ensure that meaning is transferred accurately and no changes to the scale format (e.g. lay out, statements or questions) of both scales were made. A positive correlation was found between the EMIC-CSS and the SDS total scores (r=0.41). Cronbach's alphas of 0.83 and 0.87 were found for the EMIC-CSS and SDS. The exploratory factor analysis indicated for both scales an adequate fit as unidimensional scale. A standard error of measurement of 2.38 was found in the EMIC-CSS and of 1.78 in the SDS. The test-retest reliability coefficient was respectively, 0.84 and 0.75. No floor or ceiling effects were found. CONCLUSIONS/SIGNIFICANCE: According to current international standards, our findings indicate that the EMIC-CSS and the SDS have adequate cultural validity to assess social stigma in leprosy in the Bahasa Indonesia-speaking population of Cirebon District. We believe the scales can be further improved, for instance, by adding, changing and rephrasing certain items. Finally, we provide suggestions for use with other neglected tropical diseases.


Asunto(s)
Lepra/psicología , Estigma Social , Adulto , Anciano , Comparación Transcultural , Femenino , Humanos , Indonesia/epidemiología , Lepra/epidemiología , Masculino , Persona de Mediana Edad , Proyectos Piloto , Psicometría , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Adulto Joven
7.
Fontilles, Rev. leprol ; 29(5): 437-451, mayo-ago. 2014. graf
Artículo en Español | IBECS | ID: ibc-131029

RESUMEN

Antecedentes: La lepra es una enfermedad infecciosa crónica que ha estigmatizado a los afectados desde la antigüedad hasta nuestros días. Objetivo: Se llevó a cabo esta revisión para entender el concepto, la causa y los determinantes del estigma de la lepra. Métodos: Se realizaron búsquedas electrónicas empleando PubMed (Medline) y las bases de datos CINAHL y Psyclnfo. Se buscaron trabajos no incluidos en estas bases de datos mediante Google Académico. El principal criterio para la inclusión fue el de trabajos relacionados con el estigma o lepra escritos en Thai o inglés. Resultados: Después de las búsquedas se identificaron 84 trabajos, 3 fueron eliminados por duplicidad y publicación paralela y 20 se eliminaron al revisar el resumen. Después de revisar 61 trabajos, se excluyeron 7. Por tanto, se incluyeron 54 trabajos en esta revisión. Se halló que el concepto de estigma implica no solamente características consideradas poco deseables, sino también el contexto social del individuo o grupo afectado. Las causas y determinantes del estigma relacionados con la lepra son las manifestaciones visibles de la enfermedad, las creencias culturales o religiosas, el miedo a la transmisión, la asociación con personas consideradas inferiores o intervenciones públicas relacionadas con la sanidad. Conclusión: El estigma es un fenómeno complejo que tiene múltiples causas, muchas veces relacionadas con el contexto cultural en que se presenta. A pesar de esto, se encontraron muchas similitudes con el estigma relacionado con la lepra en distintos países y culturas, que facilitaron el desarrollo de las intervenciones y el estudio


Background: Leprosy is a chronic infectious disease that has stigmatised people affected since ancient times until now. This has resulted in difficulties in the lives of those affected. Purpose: this literature review was conducted to understand the concept, causes, and determinants of stigma in leprosy. Methods: electronic searches were undertaken using PubMed (Medline), CINAHL and Psyclinfo databases. The internet was searched through Google Scholar for papers not found in these databases. The main inclusion criteria were papers related to stigma or leprosy written in Thai or English. Results: After searching the databases, 84 papers were identified, 3 were removed because of duplication and parallel publication, and 20 were removed on abstract screening. After reading 61 full papers, 7 were excluded. Finally, 54 were included in this review. It was found that the concept of stigma involves not only characteristics considered undesirable, but also the social context of the individual or group. Reported causes and determinants of stigma related to leprosy are the external manifestations of the disease, cultural and religious beliefs, fear of transmission, association with people considered inferior and public health-related interventions. Conclusion: Stigma is a complex phenomenon that has multiple causes, often linked to the cultural context in which it occurs. Despite this, many similarities were found in leprosy-related stigma across countries and cultures, which would facilitate the development of interventions


Asunto(s)
Humanos , Lepra , Estigma Social , Comparación Transcultural , Causalidad
8.
Compr Psychiatry ; 55(1): 221-31, 2014 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-24060237

RESUMEN

The Internalized Stigma of Mental Illness (ISMI) scale is a 29-item questionnaire measuring self-stigma among persons with psychiatric disorders. It was developed with substantial consumer input and has been widely used, but its psychometric qualities have not been comprehensively evaluated across multiple versions. Here we review the 55 known versions, and provide the 47 available versions, including: Arabic, Armenian, Bengali, Bulgarian, Chinese (Mainland, Taiwan, Hong Kong), Croatian, Dutch, English (USA, South Africa), Estonian, Farsi, Finnish, French, German, Greek, Hebrew, Hindi, Japanese, Khmer, Korean, Lithuanian, Lugandan, Maltese, Polish, Portuguese (Portugal, Brazil), Romanian, Russian, Samoan, Slovenian, Spanish (Spain), Swahili, Swedish, Tongan, Turkish, Urdu, and Yoruba, and qualitative English and Swahili versions, as well as versions for depression, schizophrenia, substance abuse, eating disorders, epilepsy, inflammatory bowel disease, leprosy, smoking, parents and caregivers of people with mental illness, and ethnicity. The various versions show reliability and validity across a wide range of languages, cultures, and writing systems. The most commonly reported findings of studies using the ISMI are that internalized stigma correlates with higher depression, lower self esteem, and higher symptom severity. Initial studies of ways to reduce internalized stigma are promising and warrant further investigation.


Asunto(s)
Cultura , Trastornos Mentales/psicología , Autoimagen , Estigma Social , Estereotipo , Comparación Transcultural , Humanos
9.
Psychol Assess ; 25(4): 1103-10, 2013 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-23730826

RESUMEN

Standard clinical significance classifications are based on movement between the "dysfunctional" and "functional" distributions; however, this dichotomy ignores heterogeneity within the "dysfunctional" population. Based on the methodology described by Tingey, Lambert, Burlingame, and Hansen (1996), the present study sought to present a 3-distribution clinical significance model for the 21-item version of the Depression Anxiety Stress Scales (DASS-21; P. F. Lovibond & Lovibond, 1995) using data from a normative sample (n = 2,914), an outpatient sample (n = 1,000), and an inpatient sample (n = 3,964). DASS-21 scores were collected at pre- and post-treatment for both clinical samples, and patients were classified into 1 of 5 categories based on whether they had made a reliable change and whether they had moved into a different functional range. Evidence supported the validity of the 3-distribution model for the DASS-21, since inpatients who were classified as making a clinically significant change showed lower symptom severity, higher perceived quality of life, and higher clinician-rated functioning than those who did not make a clinically significant change. Importantly, results suggest that the new category of recovering is an intermediate point between recovered and making no clinically significant change. Inpatients and outpatients have different treatment goals and therefore use of the concept of clinical significance needs to acknowledge differences in what constitutes a meaningful change.


Asunto(s)
Terapia Conductista , Terapia Cognitivo-Conductual , Trastorno Depresivo/psicología , Trastorno Depresivo/terapia , Trastornos Mentales/terapia , Inventario de Personalidad/estadística & datos numéricos , Trastornos de Adaptación/diagnóstico , Trastornos de Adaptación/psicología , Trastornos de Adaptación/terapia , Adolescente , Adulto , Anciano , Atención Ambulatoria , Trastornos de Ansiedad/diagnóstico , Trastornos de Ansiedad/psicología , Trastornos de Ansiedad/terapia , Comparación Transcultural , Trastorno Depresivo/diagnóstico , Femenino , Hospitalización , Humanos , Masculino , Trastornos Mentales/diagnóstico , Trastornos Mentales/psicología , Persona de Mediana Edad , Trastornos del Humor/diagnóstico , Trastornos del Humor/psicología , Trastornos del Humor/terapia , Evaluación de Procesos y Resultados en Atención de Salud/estadística & datos numéricos , Trastornos de la Personalidad/diagnóstico , Trastornos de la Personalidad/psicología , Trastornos de la Personalidad/terapia , Psicometría , Psicoterapia de Grupo , Trastornos Psicóticos/diagnóstico , Trastornos Psicóticos/psicología , Trastornos Psicóticos/terapia , Calidad de Vida/psicología , Valores de Referencia , Reproducibilidad de los Resultados , Trastornos Relacionados con Sustancias/diagnóstico , Trastornos Relacionados con Sustancias/psicología , Trastornos Relacionados con Sustancias/terapia , Estados Unidos , Australia Occidental , Adulto Joven
10.
Int J Dermatol ; 52(4): 432-40, 2013 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-23451850

RESUMEN

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


Asunto(s)
Comparación Transcultural , Lepra/psicología , Estigma Social , Adulto , Anciano , Estudios Transversales , Dermatología , Empleo , Relaciones Familiares , Femenino , Educación en Salud , Humanos , Relaciones Interpersonales , Entrevistas como Asunto , Lepra/diagnóstico , Lepra/prevención & control , Los Angeles , Masculino , Persona de Mediana Edad , Salud Pública , Autoimagen , Tanzanía
11.
Disabil Rehabil ; 28(4): 193-203, 2006 Feb 28.
Artículo en Inglés | MEDLINE | ID: mdl-16467054

RESUMEN

PURPOSE: To develop a scale to measure (social) participation for use in rehabilitation, stigma reduction and social integration programmes. METHOD: A scale development study was carried out in Nepal, India and Brazil using standard methods. The instrument was to be based on the Participation domains of the International Classification of Functioning, Disability and Health (ICF), be cross-cultural in nature and assess client-perceived participation. Respondents rated their participation in comparison with a "peer", defined as "someone similar to the respondent in all respects except for the disease or disability". RESULTS: An 18-item instrument was developed in seven languages. Crohnbach's alpha was 0.92, intra-tester stability 0.83 and inter-tester reliability 0.80. Discrimination between controls and clients was good at a Participation Score threshold of 12. Responsiveness after a "life change" was according to expectation. CONCLUSIONS: The Participation Scale is reliable and valid to measure client-perceived participation in people affected by leprosy or disability. It is expected to be valid in other (stigmatised) conditions also, but this needs confirmation. The scale allows collection of participation data and impact assessment of interventions to improve social participation. Such data may be compared between clients, interventions and programmes. The scale is suitable for use in institutions, but also at the peripheral level.


Asunto(s)
Personas con Discapacidad , Indicadores de Salud , Salud Pública , Rehabilitación , Encuestas y Cuestionarios/normas , Algoritmos , Brasil , Comparación Transcultural , Personas con Discapacidad/psicología , Personas con Discapacidad/rehabilitación , Personas con Discapacidad/estadística & datos numéricos , Femenino , Humanos , India , Relaciones Interpersonales , Entrevistas como Asunto , Masculino , Nepal , Satisfacción del Paciente , Salud Pública/estadística & datos numéricos , Calidad de Vida , Rehabilitación/estadística & datos numéricos , Reproducibilidad de los Resultados , Factores Socioeconómicos
13.
J Eur Acad Dermatol Venereol ; 16(6): 573-8, 2002 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-12482039

RESUMEN

BACKGROUND: Vitiligo, a common pigmentary disorder, is recognized to be associated with a high psychiatric morbidity, yet compared to other dermatological disorders like leprosy, psoriasis, etc., it has not been subjected to detailed evaluation of its psychological consequences. The data from the developing countries on this aspect in particular is meager. METHODS: One hundred and thirteen cases with vitiligo were evaluated along with 55 healthy controls comparable for sociodemographic profile and matched on attitude to appearance scale. Clinical details, impact of illness, associated dysfunction and psychological morbidity were additionally assessed. RESULTS: Twenty-eight patients with vitiligo were found to have psychiatric morbidity, a clinic prevalence rate of 25% (95% confidence interval 20.3-29.3%). The majority of the cases had a diagnosis of adjustment disorder. Psychiatric morbidity was significantly correlated with dysfunction arising out of illness. CONCLUSIONS: Vitiligo is associated with high psychiatric morbidity. There is a need to develop cross-cultural database on psychosocial aspects and psychiatric morbidity associated with vitiligo.


Asunto(s)
Trastornos de Adaptación/epidemiología , Vitíligo/psicología , Adulto , Estudios de Casos y Controles , Comparación Transcultural , Femenino , Humanos , India/epidemiología , Masculino , Morbilidad , Prevalencia , Vitíligo/epidemiología
14.
s.l; s.n; 2002. 6 p. tab.
No convencional en Inglés | Sec. Est. Saúde SP, HANSEN, Hanseníase, SESSP-ILSLACERVO, Sec. Est. Saúde SP | ID: biblio-1241011

RESUMEN

BACKGROUND: Vitiligo, a common pigmentary disorder, is recognized to be associated with a high psychiatric morbidity, yet compared to other dermatological disorders like leprosy, psoriasis, etc., it has not been subjected to detailed evaluation of its psychological consequences. The data from the developing countries on this aspect in particular is meager. METHODS: One hundred and thirteen cases with vitiligo were evaluated along with 55 healthy controls comparable for sociodemographic profile and matched on attitude to appearance scale. Clinical details, impact of illness, associated dysfunction and psychological morbidity were additionally assessed. RESULTS: Twenty-eight patients with vitiligo were found to have psychiatric morbidity, a clinic prevalence rate of 25 per cent (95 per cent confidence interval 20.3-29.3per cent). The majority of the cases had a diagnosis of adjustment disorder. Psychiatric morbidity was significantly correlated with dysfunction arising out of illness. CONCLUSIONS: Vitiligo is associated with high psychiatric morbidity. There is a need to develop cross-cultural database on psychosocial aspects and psychiatric morbidity associated with vitiligo.


Asunto(s)
Masculino , Femenino , Humanos , Adulto , Comparación Transcultural , Morbilidad , Prevalencia , Trastornos de Adaptación/epidemiología , Vitíligo/epidemiología , Vitíligo/psicología , India/epidemiología
16.
Soc Sci Med ; 42(1): 3-19, 1996 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-8745104

RESUMEN

The study analyzes the traditional beliefs and practices concerning leprosy of the Limba people of Sierra Leone. It shows that this dialectally diverse ethnic group has two views of leprosy and its cause, and two varieties of stigma associated with the disease. The Limba have abandoned their traditional treatments for leprosy in response to an effective leprosy control programme, but retained their traditional world view, including its definition of illness, which holds a person seriously ill only when he has severe pain or disability. Thus, they seek treatment from the programme, but often at a relatively advanced stage of the disease. The study shows that the Limba have reinterpreted the notion of 'germs' as introduced by medical workers, and that leprosy control workers have their own misunderstandings of Limba beliefs and practices. The study points the way to improved communication between leprosy workers and Limba patients by focusing on the points at which their views differ, and by identifying concepts within Limba world view that can be adapted by leprosy workers to help convey their message. The study emphasizes the importance of world view as a key to understanding patient attitudes and behaviour in developing countries, and to making valid cross-cultural comparisons, but notes that it can take years for an investigator to understand the world view of a particular culture. It argues that in short-term research projects there is an advantage to working with an anthropologist who has in-depth knowledge of the culture, but who may not be a specialist in medical anthropology.


Asunto(s)
Actitud Frente a la Salud , Evolución Cultural , Educación en Salud , Lepra/prevención & control , Antropología Cultural , Comparación Transcultural , Humanos , Lepra/etnología , Lepra/terapia , Medicina Tradicional , Fitoterapia , Prejuicio , Población Rural , Sierra Leona/etnología , Valores Sociales , Hechicería
19.
Soc Sci Med ; 39(4): 537-41, 1994 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-7973853

RESUMEN

A study to determine some socio-cultural factors influencing knowledge and attitudes of the community toward leprosy was carried out in north-western Botswana, where cases of leprosy have been known to exist over the years. The study was largely qualitative, using ethnographic approaches. The research was tailored in a way to capture the ethnic diversity of the region, in particular two ethnic groups, namely Bayei and Bambukushu. The name or symptom complex associated with leprosy was 'ngara' or 'lepero' and this was associated with bad blood. Knowledge on disease causation was lacking, which in turn influenced health seeking behaviour of patients. Patients were well integrated and accepted into the social structure of communities. Women caring for these patients did experience some additional burden and identified time as their major constraint in caretaking. It was apparent that the degree of rejection correlated with seriousness of the disease and extent of disabilities and dysfunction. The present pattern of health seeking behaviour needs to be altered, so that an early diagnosis can be made at the health facility. This will aid appropriate management and prevent occurrence of deformities and disabilities, which in turn will reduce rejection and isolation of patients. Education of community, patients, traditional and religious healers on various aspects of the disease, especially causation, is essential to achieve a change in the health seeking behaviour.


Asunto(s)
Características Culturales , Países en Desarrollo , Lepra/psicología , Opinión Pública , Rol del Enfermo , Botswana , Comparación Transcultural , Conocimientos, Actitudes y Práctica en Salud , Humanos , Lepra/etnología , Lepra/prevención & control , Medicina Tradicional , Aceptación de la Atención de Salud , Religión y Medicina , Población Rural
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