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Development and validation of the Epilepsy Self‐Stigma Scale

OBJECTIVE: Self‐stigma is the internalization of negative public attitudes and is often experienced by patients with epilepsy (PWE). Greater self‐stigma is associated with lower self‐esteem and hinders therapeutic behavior. The study aims were to develop the Epilepsy Self‐Stigma Scale (ESSS) to asse...

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Autores principales: Kuramochi, Izumi, Iwayama, Takayuki, Horikawa, Naoshi, Shimotsu, Sakie, Watanabe, Satsuki, Yamanouchi, Hideo, Yoshimasu, Haruo
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8633466/
https://www.ncbi.nlm.nih.gov/pubmed/34651460
http://dx.doi.org/10.1002/epi4.12547
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author Kuramochi, Izumi
Iwayama, Takayuki
Horikawa, Naoshi
Shimotsu, Sakie
Watanabe, Satsuki
Yamanouchi, Hideo
Yoshimasu, Haruo
author_facet Kuramochi, Izumi
Iwayama, Takayuki
Horikawa, Naoshi
Shimotsu, Sakie
Watanabe, Satsuki
Yamanouchi, Hideo
Yoshimasu, Haruo
author_sort Kuramochi, Izumi
collection PubMed
description OBJECTIVE: Self‐stigma is the internalization of negative public attitudes and is often experienced by patients with epilepsy (PWE). Greater self‐stigma is associated with lower self‐esteem and hinders therapeutic behavior. The study aims were to develop the Epilepsy Self‐Stigma Scale (ESSS) to assess self‐stigma in PWE and to examine the scale's reliability and validity. METHODS: We created a test scale based on items from an existing stigma scale and the results of a previous qualitative analysis we conducted. We recruited 200 outpatients from departments specializing in epilepsy (psychiatry, neurology, and pediatric neurology) at four facilities in Tokyo and Saitama prefecture, Japan, between September and December 2020. Participants also completed the Rosenberg Self‐Esteem Scale (RSES) and Beck Depression Inventory (BDI‐II). RESULTS: Questionnaires were returned from 102 participants (response rate: 51%). After excluding two participants with incomplete questionnaires, data for 100 participants were analyzed (53 women, 47 men; mean age [standard deviation]: 39.86 [17.45] years). Exploratory factor analysis extracted eight items loading on three factors: internalization of stigma, societal incomprehension, and confidentiality. Cronbach's α for all items and each factor demonstrated acceptable internal consistency (α = 0.76‐0.87). Test‐retest reliability was confirmed using data from 21 participants who completed the scale twice (r = 0.72 to 0.90). ESSS total scores and subscale scores correlated with RSES and BDI‐II scores (r = −0.30 to 0.55). The ESSS demonstrated substantial constructive validity. However, total scores did not significantly correlate with objective physician assessment of self‐stigma. SIGNIFICANCE: The results showed that the eight‐item ESSS has high reliability and validity. This scale could facilitate the examination of factors associated with self‐stigma in PWE, which could inform the development of effective interventions for reducing stigma.
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spelling pubmed-86334662021-12-06 Development and validation of the Epilepsy Self‐Stigma Scale Kuramochi, Izumi Iwayama, Takayuki Horikawa, Naoshi Shimotsu, Sakie Watanabe, Satsuki Yamanouchi, Hideo Yoshimasu, Haruo Epilepsia Open Full‐length Original Research OBJECTIVE: Self‐stigma is the internalization of negative public attitudes and is often experienced by patients with epilepsy (PWE). Greater self‐stigma is associated with lower self‐esteem and hinders therapeutic behavior. The study aims were to develop the Epilepsy Self‐Stigma Scale (ESSS) to assess self‐stigma in PWE and to examine the scale's reliability and validity. METHODS: We created a test scale based on items from an existing stigma scale and the results of a previous qualitative analysis we conducted. We recruited 200 outpatients from departments specializing in epilepsy (psychiatry, neurology, and pediatric neurology) at four facilities in Tokyo and Saitama prefecture, Japan, between September and December 2020. Participants also completed the Rosenberg Self‐Esteem Scale (RSES) and Beck Depression Inventory (BDI‐II). RESULTS: Questionnaires were returned from 102 participants (response rate: 51%). After excluding two participants with incomplete questionnaires, data for 100 participants were analyzed (53 women, 47 men; mean age [standard deviation]: 39.86 [17.45] years). Exploratory factor analysis extracted eight items loading on three factors: internalization of stigma, societal incomprehension, and confidentiality. Cronbach's α for all items and each factor demonstrated acceptable internal consistency (α = 0.76‐0.87). Test‐retest reliability was confirmed using data from 21 participants who completed the scale twice (r = 0.72 to 0.90). ESSS total scores and subscale scores correlated with RSES and BDI‐II scores (r = −0.30 to 0.55). The ESSS demonstrated substantial constructive validity. However, total scores did not significantly correlate with objective physician assessment of self‐stigma. SIGNIFICANCE: The results showed that the eight‐item ESSS has high reliability and validity. This scale could facilitate the examination of factors associated with self‐stigma in PWE, which could inform the development of effective interventions for reducing stigma. John Wiley and Sons Inc. 2021-10-26 /pmc/articles/PMC8633466/ /pubmed/34651460 http://dx.doi.org/10.1002/epi4.12547 Text en © 2021 The Authors. Epilepsia Open published by Wiley Periodicals LLC on behalf of International League Against Epilepsy. https://creativecommons.org/licenses/by/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Full‐length Original Research
Kuramochi, Izumi
Iwayama, Takayuki
Horikawa, Naoshi
Shimotsu, Sakie
Watanabe, Satsuki
Yamanouchi, Hideo
Yoshimasu, Haruo
Development and validation of the Epilepsy Self‐Stigma Scale
title Development and validation of the Epilepsy Self‐Stigma Scale
title_full Development and validation of the Epilepsy Self‐Stigma Scale
title_fullStr Development and validation of the Epilepsy Self‐Stigma Scale
title_full_unstemmed Development and validation of the Epilepsy Self‐Stigma Scale
title_short Development and validation of the Epilepsy Self‐Stigma Scale
title_sort development and validation of the epilepsy self‐stigma scale
topic Full‐length Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8633466/
https://www.ncbi.nlm.nih.gov/pubmed/34651460
http://dx.doi.org/10.1002/epi4.12547
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