Generating a model of epileptic stigma: The role of qualitative analysis

Scambler, Graham; Hopkins, Anthony

doi:10.1016/0277-9536(90)90258-t

Cited by 124 publications

(90 citation statements)

References 6 publications

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“…Few studies have used objective measures to demonstrate negative views towards individuals with CFS. However, numerous authors describe the negative attitudes towards various medically unexplained syndromes (Beaulieu, 1997;Kirmayer, 1999;Hall & Morrow, 1988;Bammer, & Martin, 1992;Lennon et al, 1989), and account for these primarily by the attributions of symptoms to psychiatrie and psychological illness which have been shown to be highly stigmatized (Crisp et al, 2000;Markowitz 1998;Albrecht et al, 1982); Even in the absence of objective evidence of stigma, there is sorne evidence that the perception of stigma can lead to significant emotional distress (Scambler, 1984;Scambler & Hopkins, 1990). Subjective reports of stigma may have been influenced by the mood states and attitudes of respondents.…”

Section: Limitationsmentioning

confidence: 99%

Perceived stigma in functional somatic syndromes and comparable medical conditions

Looper

Kirmayer

2004

Journal of Psychosomatic Research

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Section: Limitationsmentioning

confidence: 99%

Perceived stigma in functional somatic syndromes and comparable medical conditions

Looper

Kirmayer

2004

Journal of Psychosomatic Research

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“…It has been assumed that the main t h reat comes from "normal" people who, ignor a n t and apprehensive about what epilepsy is, tend to maintain social distance through discriminatory p r a ctices in both public and private spheres 10 .…”

Section: Discussionmentioning

confidence: 99%

The second step in the construction of a stigma scale of epilepsy

Salgado

Fernándes

Noronha

et al. 2005

Arq. Neuro-Psiquiatr.

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-Rationale: The issue of stigmatization is one of the most common psychosocial problems faced by people with epilepsy. Purpose: A second step towards the development of a scale to measure epilepsy stigma. Method: We applied a closed questionnaire to 12 patients and 32 relatives from the Epilepsy Outpatient Clinic at the University Hospital of Campinas. Results: The results are grouped in three main domains: medical, social and personal areas. Medical: the subjects did not know exactly what epilepsy is or how it is caused; nonetheless they know how to treat it. Social: the most important areas that people with epilepsy are discriminated are at work and social relationships. Patients also complained about their lack of freedom and limits on re c reation activities. Personal Area: subjects apparently have the same feelings and thoughts about epilepsy and seizure s . C o n c l u s i o n: This study analyzed the most common aspects pre s e n ted in the questionnaire to assess epilepsy stigma for the Brazilian culture which are the base to the elaboration of a stigma scale of epilepsy.KEY WORDS: stigma, epilepsy, scale, quality of life, seizures.O segundo passo para a construção de uma escala de estigma na epilepsia RESUMO -I n t ro d u ç ã o:O estigma tem sido projetado como um dos problemas sociais mais comuns enfre n t ados por pessoas com epilepsia. Objetivo: Este estudo representa o segundo passo no desenvolvimento da escala para mensurar estigma na epilepsia. Método: O questionário foi aplicado em 12 pacientes e 32 familiares, entrevistados no Ambulatório de Epilepsia do Hospital das Clínicas, UNICAMP. Resultados: Os resultados estão agrupados nas três principais áreas: médica, social e pessoal. Médica: os sujeitos mostraram não ter informação suficiente ou adequada sobre epilepsia e crises, o que não aconteceu com relação ao tratamento. Social: o trabalho e as relações sociais apareceram como os aspectos de maior discriminação na epilepsia. Os pacientes também ressaltaram a falta de liberdade e restrição de atividades de lazer como aspectos bastante prejudicados. Área pessoal: todos os sujeitos aparentemente têm os mesmos sentimentos e pensamentos sobre epilepsia e crises epilépticas. Conclusão: Este estudo analisou os aspectos mais comuns apresentados no questionário para avaliar o estigma na epilepsia na cultura brasileira, os quais serão a base da elaboração da escala de estigma na epilepsia. PALAVRAS-CHAVE: estigma, epilepsia, escala, qualidade de vida, crises epilépticas.Epilepsy is a common neurological condition t h a t a ffects the psychological adjustment and the quality of people's life and there f o re, reveals a high incidence of fears, misunderstanding and stigma 1 , 2 . The social and psychological consequences of epilepsy a re numerous. Patients often describe social stigm a and the fear of being discriminated 3 . The issue o f stigmatization is one of the most common psychosocial problems faced by people with epilepsy 4 -9

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“…From the patient's view, the diagnosis of epilepsy triggers a change in perc e p t i o n , bringing on fears of being diff e rent and anxiety about the future in the community, with apprehension about getting a job or starting a family 1 3 . Perception is often negative, which may impair the patient's quality of life and reinforces the stigma 13 .…”

mentioning

confidence: 99%

Stigma scale of epilepsy: validation process

Fernándes

Salgado

Noronha

et al. 2007

Arq. Neuro-Psiquiatr.

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-Purpose: To validate a Stigma Scale of Epilepsy (SSE). Methods: The SSE was completed by 40 adult with epilepsy attending an Outpatient Epilepsy Clinic at the University Hospital of UNICAMP, and by 40 people from the community. People were interviewed on an individual basis; a psychologist read the questions to the subjects who wrote the answers in a sheet. The procedure was the same for all the subjects and completion took around ten minutes. Results: The SSE has 24 items. The internal consistency of the SSE showed C ro n b a c h 's coefficient 0.88 for the patients with epilepsy and 0.81 for the community. The overall mean scores of the Stigma Scale of Epilepsy formula were: 46 (SD=18.22) for patients and 49 (SD=13.25) for the community where a score of 0 would suggest no stigma, and 100 maximum stigma. Discussion: The SSE has satisfactory content validity and high internal consistency. It allows the quantification of the perception of stigma by patients and people from community; this can then be used for interventional studies, such as mass media campaign in minimizing the negative facets of stigma.KEY WORDS: stigma, epilepsy, instrument development, quality of life, validation, stigma scale. Escala de estigma na epilepsia: processo de validação RESUMO -Objetivo: Validar a Escala de Estigma na Epilepsia (EEE). Método: A EEE foi aplicada em 40 pacientes adultos com o diagnóstico de Epilepsia do Ambulatório de Epilepsia do HC/Unicamp e em 40pessoas da comunidade em geral. Os sujeitos foram entrevistados individualmente pelas psicólogas, que foram lendo as questões e anotando as respostas na escala. As condições de aplicação foram as mesmas e a aplicação durou cerca de 10 minutos. Resultados: A EEE possui 24 itens. A consistência interna da EEE mostrou de Cronbach, de 0,88 para os pacientes com epilepsia e 0,81 para a comunidade. As médias do valor geral de estigma obtido com a fórmula da EEE foram: 46 (DP=18,22) para os pacientes e 49 (DP=13,25) para a comunidade. Discussão: A EEE possui uma satisfatória validade e alta consistência interna. Isso permite uma quantificação da percepção de estigma da epilepsia na comunidade em geral, que pode ser utilizada para estudos interventivos, como campanhas na mídia, para minimizar as facetas negativas do estigma na sociedade.PA L AV R A S -C H AVE: estigma, epilepsia, criação de instrumento, qualidade de vida, validação, escala de estigma.

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Generating a model of epileptic stigma: The role of qualitative analysis

Cited by 124 publications

References 6 publications

Perceived stigma in functional somatic syndromes and comparable medical conditions

Perceived stigma in functional somatic syndromes and comparable medical conditions

The second step in the construction of a stigma scale of epilepsy

Stigma scale of epilepsy: validation process

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