A study of factors influencing self‐stigma in people with epilepsy: A nationwide online questionnaire survey in Japan

Kuramochi, Izumi; Iwayama, Takayuki; Oga, Koko; Shiganami, Takafumi; Umemura, Tomoki; Kobayashi, Sayaka; Yasuda, Tamotsu; Yoshimasu, Haruo

doi:10.1002/epi4.12661

Cited by 10 publications

(10 citation statements)

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“…Previous studies determined that incorrect knowledge and misconceptions create negative attitudes toward patients and that this condition increases stigma 6,42 . However, neither the Japanese survey nor the present study found a correlation between knowledge about epilepsy and self‐stigma 21,33 . One possible reason for this difference is that most of the previous studies on stigma against epilepsy were reported in low‐ and middle‐income countries, which have different cultural backgrounds from Germany, where this study was conducted, and Japan, which has been reported in previous studies.…”

Section: Discussioncontrasting

confidence: 87%

“…Some previous studies have described an association between high seizure frequency and the stigma. 16,17,43 By contrast, a study in Japan showed a negative correlation, 33 and in Germany, there were no significant correlations between seizure frequency and self-stigma. These results suggest that only reducing seizures is an inadequate response to reducing the self-stigma of PWE.…”

Section: Usefulness Of Questionnaires For Clinical Applicationmentioning

confidence: 87%

“…6,42 However, neither the Japanese survey nor the present study found a correlation between knowledge about epilepsy and self-stigma. 21,33 One possible reason for this difference is that most of the previous studies on stigma against epilepsy were reported in low-and middle-income countries, which have different cultural backgrounds from Germany, where this study was conducted, and Japan, which has been reported in previous studies. Another possible reason is that the self-stigma might be internalized within the patients and is a complex phenomenon.…”

Section: Validity Of the German Version Of The Esssmentioning

confidence: 89%

“…This scale has three answer categories (“true,” “false,” or “I do not know”) and the percentage of correctly answered items is used as the total score. The Japanese version of this scale has been used in several studies on epilepsy in Japan 31–33 . One item of the original Epilepsy Knowledge Scale, which refers to driving (“If persons with epilepsy drive, they must inform the driving authorities about their condition.”), is not used in the Japanese version due to differences in road traffic laws in different countries.…”

Section: Methodsmentioning

confidence: 99%

“…In previous studies, the psychosocial variables most strongly correlated with self-stigma in PWE were selfesteem, depressive symptoms, and anxiety. 21,33 As for the relationship between QOL and self-stigma, previous studies on mental illness have reported and shown a negative correlation. 40,41 In our study, we found that higher levels of anxiety and depressive symptoms were associated with higher scores on the ESSS-G.…”

Section: Validity Of the German Version Of The Esssmentioning

confidence: 99%

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Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)

et al. 2023

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ObjectiveSelf‐stigma is the internalization of unfavorable public perceptions, which people with epilepsy (PWE) frequently experience. PWE with strong self‐stigma have low self‐esteem and are less likely to engage in treatment behavior. The Epilepsy Self‐Stigma Scale (ESSS) has been developed and validated in Japan. We translated the ESSS into German for this study to examine its reliability and validity.MethodsWe created the German version of ESSS (ESSS‐G) based on the original Japanese version. From May to October 2022, we recruited out‐ and inpatients from Bethel Epilepsy Centre, University Hospital for Epileptology, for psychometric evaluation. Inclusion criteria were an age of ≥18 years, sufficient reading and speaking skills in German, and the ability to comprehend the German questionnaires. Participants also completed the Rosenberg Self‐Esteem Scale (RSES), Neurological Disorders Depression Inventory for Epilepsy (NDDI‐E), Generalized Anxiety Disorder 7 (GAD‐7), Epilepsy Knowledge Scale, and items on “overall quality of life (QOL)” and “overall health” (items from QOLIE‐31).ResultsOne hundred twenty‐eight of 146 patients asked to participate granted informed consent and completed the study questionnaire (87.7% response rate). 115 cases were analyzed since 13 did not match the inclusion criteria. The analysis revealed a single factor explaining 49.2% of the total variance. All factor loadings were >0.40, and the reliability was high (Cronbach's α = 0.80). Higher ESSS total scores were associated with higher anxiety (GAD‐7, r = 0.54, P < 0.001) and depression (NDDI‐E, r = 0.45, P < 0.001), lower self‐esteem (RSES, r = −0.41, P < 0.001), overall QOL (r = −0.40, P < 0.001), and overall health (r = −0.35, P < 0.001), but not with knowledge about epilepsy (r = 0.03, P = 0.770). In Germany, females, younger individuals, patients with earlier seizure onset, and those with generalized epilepsy had significantly higher self‐stigma.SignificanceThe German version of the ESSS proved reliable and valid. It allows to evaluate the efficacy of treatment strategies in lowering self‐stigma and conducting intercultural comparisons of epilepsy self‐stigma.

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Section: Discussioncontrasting

confidence: 87%

Section: Usefulness Of Questionnaires For Clinical Applicationmentioning

confidence: 87%

Section: Validity Of the German Version Of The Esssmentioning

confidence: 89%

Section: Methodsmentioning

confidence: 99%

Section: Validity Of the German Version Of The Esssmentioning

confidence: 99%

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Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)

et al. 2023

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A study of factors influencing self‐stigma in people with epilepsy: A nationwide online questionnaire survey in Japan

et al. 2022

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Objective: Epilepsy carries a significant stigma. While there is some evidence that self-stigma accompanies a lack of knowledge about epilepsy, there are no studies in Japan. This study aimed to determine factors contributing to selfstigma in Japan. Methods:We conducted an online questionnaire survey. Three hundred and ten patients completed the questionnaire (mean age of 47.8 ± 11.9) in contrast to the total registered users on the questionnaire site as 28 315 from Jul 29 to Aug 2, 2021. We asked about demographic variables, satisfaction with treatment, limitations in life, support status, seizure frequency, the Epilepsy Self-Stigma Scale (ESSS), the Rosenberg Self-Esteem Scale (RSES), and the Epilepsy Knowledge Scale (EKS). We conducted the statistical analysis on self-stigma, self-esteem, knowledge of epilepsy, and seizure frequency associations by Spearman's rank correlation.

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A multicultural comparative study of self‐stigma in epilepsy: Differences across four cultures

Iwayama,

Mizuno,

Yildiz

et al. 2024

Epilepsia Open

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ObjectiveEpilepsy is a neurological disorder characterized by recurrent seizures, exhibiting variance in prevalence and treatment availability across diverse geopolitical contexts and cultural milieus. The stigma associated with epilepsy is a significant global issue affecting the quality of life (QOL) of people with epilepsy (PWE). This study aims to examine the relationship between self‐stigma and depressive symptoms in PWE, with a particular emphasis on understanding the manifestations of these across different cultural contexts. We aim to enhance the provision of customized care to diverse cultural settings, fostering the adoption of healthier lifestyles for PWE.MethodsWe recruited PWE who received treatment at specialized medical facilities for epilepsy in Japan, Malaysia (Chinese, Malay), and Turkey from February to October 2023. The Epilepsy Self‐Stigma Scales (ESSS), Neurological Disorders Depression Inventory for Epilepsy (NDDI‐E), and Generalized Anxiety Disorder 7 (GAD‐7) in local languages were used to assess self‐stigma, depressive symptoms, and anxiety.ResultsThe ESSS total scores were significantly higher among the Turkish and Japanese cohorts (F [3, 406] = 6.57, p < 0.001, η2 = 0.05). In addition, the self‐stigma observed moderate positive correlations for depressive symptoms (rs = 0.41–0.50, Ps < 0.001) and anxiety (rs = 0.42–0.44, Ps < 0.001). The ANCOVA findings suggested that the notable variations in self‐stigma, as found in the one‐way ANOVA conducted across four cultures, were reduced when taking into consideration depressed symptoms. Our finding highlights the potential influence of mental health factors over cultural factors concerning self‐stigma.SignificanceThe manifestation of self‐stigmatization within epilepsy exhibits distinctions across diverse cultural cohorts, regardless of the demographic and clinical variation, yet demonstrates a significant correlation with psychological factors. In subsequent research endeavors, we should comprehensively investigate these subtle differences, their potential impact on patient care, and the development of supportive approaches.Plain Language SummaryThis cross‐cultural study reveals significant variations in self‐stigma among people with epilepsy across different cultural contexts, with Turkish and Japanese cohorts showing higher levels. Self‐stigma demonstrated moderate positive correlations with depressive symptoms and anxiety across all cultures. Notably, differences in self‐stigma were reduced when accounting for depressive symptoms, suggesting that mental health factors may have a stronger influence than cultural factors. These findings underscore the importance of considering both cultural and psychological aspects in developing targeted interventions to address self‐stigma in epilepsy care.

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A study of factors influencing self‐stigma in people with epilepsy: A nationwide online questionnaire survey in Japan

Cited by 10 publications

References 27 publications

Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)

Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)

A study of factors influencing self‐stigma in people with epilepsy: A nationwide online questionnaire survey in Japan

A multicultural comparative study of self‐stigma in epilepsy: Differences across four cultures

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