Development and validation of the Epilepsy Self‐Stigma Scale
Abstract 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)...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2021-12-01
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| Series: | Epilepsia Open |
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| Online Access: | https://doi.org/10.1002/epi4.12547 |
| _version_ | 1818742787141533696 |
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| author | Izumi Kuramochi Takayuki Iwayama Naoshi Horikawa Sakie Shimotsu Satsuki Watanabe Hideo Yamanouchi Haruo Yoshimasu |
| author_facet | Izumi Kuramochi Takayuki Iwayama Naoshi Horikawa Sakie Shimotsu Satsuki Watanabe Hideo Yamanouchi Haruo Yoshimasu |
| author_sort | Izumi Kuramochi |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-12-18T02:18:04Z |
| format | Article |
| id | doaj.art-198d2cad7a4940e59c4c36b53622f24d |
| institution | Directory Open Access Journal |
| issn | 2470-9239 |
| language | English |
| last_indexed | 2024-12-18T02:18:04Z |
| publishDate | 2021-12-01 |
| publisher | Wiley |
| record_format | Article |
| series | Epilepsia Open |
| spelling | doaj.art-198d2cad7a4940e59c4c36b53622f24d2022-12-21T21:24:20ZengWileyEpilepsia Open2470-92392021-12-016474875610.1002/epi4.12547Development and validation of the Epilepsy Self‐Stigma ScaleIzumi Kuramochi0Takayuki Iwayama1Naoshi Horikawa2Sakie Shimotsu3Satsuki Watanabe4Hideo Yamanouchi5Haruo Yoshimasu6Department of Psychiatry Saitama Medical Center Saitama Medical University Saitama JapanDepartment of Psychiatry Saitama Medical Center Saitama Medical University Saitama JapanDepartment of Psychiatry Saitama Medical Center Saitama Medical University Saitama JapanFaculty of Human Development and Education Kyoto Women's University Kyoto JapanSaitama Medical University Comprehensive Epilepsy Center Saitama JapanSaitama Medical University Comprehensive Epilepsy Center Saitama JapanDepartment of Psychiatry Saitama Medical Center Saitama Medical University Saitama JapanAbstract 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.https://doi.org/10.1002/epi4.12547epilepsypatients with epilepsyscaleseizureself‐stigma |
| spellingShingle | Izumi Kuramochi Takayuki Iwayama Naoshi Horikawa Sakie Shimotsu Satsuki Watanabe Hideo Yamanouchi Haruo Yoshimasu Development and validation of the Epilepsy Self‐Stigma Scale Epilepsia Open epilepsy patients with epilepsy scale seizure self‐stigma |
| 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 | epilepsy patients with epilepsy scale seizure self‐stigma |
| url | https://doi.org/10.1002/epi4.12547 |
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