Stigma scale of epilepsy: validation process

Abstract

-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.

Validation and Reliability Study of the Turkish Version of the Stigma Scale of Epilepsy

“…The questions of the SSE have satisfactory content validity and high internal consistency. It complies with the main requirements of a validation process, offering reliable measurements of stigma in epilepsy (13).…”

“…Numerical scales are easy to analyze, allowing assessment of high numbers of subjects in an objective manner (13). In our study all subjects completed the measure in a short time and very easily after the first correction.…”

“…Patients often describe social stigma and the fear of being discriminated. Epilepsy Stigma erodes individuals' social status and social network, all of which contribute to poor outcomes such as isolation, unemployment, lower prospects of marriage and not seeking treatment (4,13,14,15). Perceived stigmatization is a significant part of the hidden psychosocial burden of epilepsy since it has been related to low self-esteem, depression, anxiety, negative feelings, and impaired social skills (5).…”

“…Stigma is a term frequently used nowadays, but it is still difficult to conceptualize and measure it (13). In the literature, we found four stigma scales on epilepsy; Jacoby, Austin, Caroline, andthe24-item stigma scale of epilepsy (SSE), which was developed in Brazil.…”

Evaluation of the quality of life of patients with epilepsy and patients with physchogenic non-epileptic seizures

“…Стигма може бити лична (ин-траперсонална), интерперсонална и институционална (81). Лична стигма настаје нај-чешће од момента саопштавања дијагнозе епилепсије, а посебно код одраслих, где се са саопштењем дијагнозе развија унутрашња перцепција осећаја друштвене непо-жељности, мање вредности, различитости, повлачења, инфериорности, смањеног са-мопоштовања, самопоуздања, стида, срамоте, кривице, перцепција страха од напада, страха да буде одбачен, запостављен у породици, школи, околини, од губитка стату-са, страха од могућих непријатности приликом запослења, склапања брака... (82). Стигматизација код особе с епилепсијом доводи до поремећаја понашања код куће, радном месту и окружењу, доводи до појаве анксиозности и депресивности.…”