Epilepsy is a chronic neurological disease characterized as excessive hyper synchronized discharge of brain neurons (1, 2). Patients with epilepsy (PWEs) not only suffer from the physical problems (such as, fractures and bruising from injuries related to seizures), but also a series of complex psychosocial disorders, such as anxiety, depression, suicidal risk, stigma and discrimination, exclusion, and overprotection (1, 3–6). Among these psychosocial disorders, stigma is the one with great impacts on the recovery, prognosis, and quality of life among PWEs (7, 8), which is even greater than the adverse reactions of epileptic seizure and antiepileptic drugs (9).

The stigma related to epilepsy prevails globally (10), and it may be much more serious in China than elsewhere. To date, there are more than 9 million PWEs in China with a treatment gap of 63% (10–12). The incidence of stigma among PWEs in urban and rural areas are 71% and 89%, respectively (13). Guo pointed out that the sources of PWEs' stigma in China come from three main aspects: seizure attacks, social misconceptions, and negative attitudes toward epilepsy and negative psychological factors of patients (14). Unlike other chronic diseases, such as diabetes, the onset of seizures is sudden, uncontrollable, and always accompanied with a series of unsightly manifestations, such as sudden falls, limbs twitching, and foaming at the mouth (15), which may be a shock or an unacceptable thing to the witnesses for the first time. These feelings will alienate the witnesses from PWEs, which is a form of stigma. Besides, social misconception about epilepsy may contribute a lot to epilepsy-associated stigma (16). In rural areas of China, it is believed that epilepsy was caused by seeing ghosts, being possessed by devils, and was always thought to be a mental disease rather than neurological disease, with high possibility to be passed on to the next generation (17, 18). About 14% of parents do not want their children to play with children with epilepsy, and 75% of parents do not want their children to marry a PWE (19). Even the medical staffs in basic-level hospitals from southern China, they still showed negative and conservative attitudes toward PWEs (20). For PWEs themselves, they feel that they are physically defective and worry about their future career and social life because of their misperceptions about epilepsy, which will definitely lead to the aggravation of felt stigma (21). Therefore, it is of great importance to make everyone aware of the problems faced by PWEs and fundamentally change misconceptions of people and explore stigma determinants for social interventions in China.

To achieve effective stigma reducing interventions, stigma need to be measured accurately. The Epilepsy Stigma Scale (EES) and the Kilifi Stigma Scale of Epilepsy (KSSE) are the commonly used scales for evaluating self-stigma of PWEs (22, 23). From the perspective of people without epilepsy, the Stigma Scale of Epilepsy (SSE), developed by Brazilian researchers, has been widely applied all over the world, such as Zambia, the Czech Republic, Italy, India, and Korea (24–31). Some studies used “Public Attitudes Toward Epilepsy” scale (PATE) to evaluate the epilepsy-associated knowledge, attitudes, and practices (KAP) among the public (32, 33). But this scale lacks the focus on emotional reaction of public to epilepsy and PWEs. It is known that the PWEs are always accompanied with mood disorder, which would have effect on stigma (34). Furthermore, the public emotional reactions toward epilepsy or seizure attacks may be a source of stigma of PWEs (29). Thus, in our study, we chose the SSE to assess the epilepsy-related stigma and related emotional reaction from the perspective of people without epilepsy. Considering that its high internal consistency and validity has not been confirmed in China, we proposed to investigate the psychometric properties of the SSE and validate the Chinese version of SSE to access the epilepsy-related stigmatization of the public in China.

To validate the Chinese version of the SSE for accessing the epilepsy-related stigmatization of the public and to explore effective stigma reducing interventions, our study translated the SSE into Simplified Mandarin Chinese and qualified the translated scale with psychometric analysis, such as EFA, CFA, and internal consistency analysis. We provided clear evidence for the reliability and validity of the Chinese version of SSE.

Most of the participants included in our study were recruited via convenience sampling by randomly distributing questionnaires on the streets. Moreover, a part of the participants was enrolled through an online platform named Wenjuanxing, which enabled a wider coverage of our sample in geographical locations and life backgrounds. Indeed, the demographic data of our study indicated that our respondents had good social and cultural representation. The age of our respondents is mainly 18–60 years (95.4%). Compared with the study form Italy, our male-female ratio was more appropriate, avoiding the effect of excessive positive reactions of women on the results. As for the marital status and educational levels and medical background, there was no difference between the previous study and ours (38, 39). Additionally, most of our participants did not have family history of epilepsy or relatives with epilepsy (3.2%), whose proportion was lower than that of the previous study conducted in other counties (12.4%) (39).

With regard to reliability, the Cronbach's alpha value in our study was 0.936, and the Cronbach's alpha value of each factor of the five latent traits was above 0.7, indicating excellent internal consistency of our Chinese version of the SSE. Content validity is an important step before exploring the structure validity. It refers to the degree of agreement between the content actually measured by a scale and the content to be measured. The SSE was evaluated by experts and calculated CVI value above 0.78 indicated that the scale had good content validity.

For the structure of SSE, previous study has fitted SSE into a model with two latent traits using the exploratory item response theory (IRT) analysis. The first latent trait reflected the difficulties associated with epilepsy, whereas the second one reflected the emotions associated with epilepsy (40). Later, the Czech version was studied by Dana Brabcova et al. which extracted four-factor structure of SSE. The factor 1 and factor 3 were associated with responses of PWEs to epilepsy in their personal life and the effect of epilepsy on their study and work, whereas the factor 2 and factor 4 were associated with the emotional reaction of public to epilepsy, and their emotional perspective about PWEs (31). The Chinese version of SSE structure was a little different from others, we extracted a 6-factor structure of SSE by using the EFA. Factor 1 reflected the scare of respondents, and factor 2 reflected the sympathy of respondents, when they witnessed a seizure attack. The emotional reaction of the public to epilepsy was divided into two aspects, which might be contributed to cultural differences. Essentially, fear and sympathy are two different emotional reactions. Fear refers to a strong depressive emotional experience when people are facing a certain dangerous situation, trying to get rid of it but unable to do anything. Sympathy refers to a caring and understanding emotional response for the suffering and misfortune of others. Specifically, many people in our study said that “I was not scared when I witnessed an epileptic seizure, but I felt sad and pity for him/her.” The factor 3 reflected the difficulties faced by PWEs. The factor 4 reflected the thoughts of respondents about how PWEs felt, factor 5 reflected the prejudice associated with epilepsy, and the factor 6 reflected the knowledge of epilepsy. To be honest, the factor structure of Chinese version has been slightly modified from the original version, which might limit its application in other populations.

Items 1 and 13 were proved to be problematic and removed from the model. For item 1, it was the only item of factor 6, and thus incapable of being included in the model to evaluate the validity. Even though the phrase “be able to control their own epilepsy” sounds quite ambiguous when translated into Chinese, about 61.3% of our subjects believed that epilepsy could not be controlled by PWEs themselves or effective treatments. It is the Chinese people's subconscious understanding of epilepsy, thus forming an independent factor. Besides, the item 1 was not suitable for factor structure analysis just for statistical reasons, rather than incapacity of quantifying stigma. In fact, lack of knowledge is one aspect of stigma. People with a more knowledge or a higher education may have a lower score for stigma. In the case of item 13, it was removed for the reason that its factor loading in factor 3 and factor 4 were both higher than 0.5, which meant that item 13 had lower discriminant validity. In fact, the items 1 and 13 were also excluded in the recently validated Zambian and Czech version of the scale. They excluded items 1 and item 13 for their low factor load (31, 40).

We further validated the structural validity, convergent validity, and discriminant validity of the Chinese version of SSE. Structural validity refers to whether the structure of the scale is consistent with the theoretical assumptions of tabulation. The value of all metrics of the structural validity was excellent, indicating that the 5-factor construct of the scale fitted well. Convergent validity test showed that the item belonging to each factor was highly representative, and the discriminant validity test indicated the factors have a certain correlation, but they had a certain degree of discrimination between each other. Furthermore, we found that participants with medical background scored lower in factor 1 (the fear of seizure attacks) and factor 2 (sympathy for PWEs), which may be related to their deeper understanding of epilepsy. However, participants with family history of epilepsy scored higher on the total score and factor 2 (sympathy for PWEs), factor 3 (difficulties faced by PWEs), and factor 5 (discrimination against PWEs), which is in line with the fact we have observed clinically. Based on the above results, we hold the view that medical background and family history of epilepsy had an effect on the stigma, which is instructive for the application of the scale in the future and provides a theoretical basis for the design and grouping of subsequent studies on epilepsy stigma.

One limitation of the study is that a part of our respondents was recruited by an online platform, by which it may not include people who rarely access to computers or mobile phones, and those less educated people who were incapable of filling the scale online. Meanwhile, since our subjects mainly from Street random sampling and an online platform, we cannot carry out the test-retest reliability test. Besides, our study was conducted in Changsha, urban sampling could lower the participation rate of rural subjects thus affecting the results, as the incidence of stigma among PWEs in rural areas is higher than that of urban areas in China (13). Therefore, further studies with an adequate sample in different regions of China are needed.

Social stigma continues among PWEs. It brings them negative emotions such as anxiety and depression, restricts patients from seeking social support, and greatly affects the quality of life in PWEs. Therefore, it is crucial to formulate an effective public intervention for reducing stigma, starting with development and validation of an accurate Stigma Scale of Epilepsy, which might quantify the extent of stigma. Only when we are aware of the existence of epilepsy-associated stigma and psychosocial burden of PWEs can we have a deeper understanding of it, which may contribute to explore stigma reduction interventions to overcome prejudices, the false cognition, and to create a better social environment for PWEs and their family.

This study has shown that the Chinese version of the SSE is a valid and reliable measurement instrument.

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

The studies involving human participants were reviewed and approved by the Ethics Committee of the Xiangya Hospital of Central South University [No. 201912528]. Written informed consent to participate in this study was provided by the participants' legal guardian/next of kin.

YW and KH contributed to the acquisition of data, and the drafting of the manuscript for content and interpretation of data. LF and BX contributed to the study design and revision of manuscript. SW contributed to data analysis.

This work was supported by the Natural Science Foundation of China [Grant Numbers: 82071461 and 81771407].

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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