Perspective Chapter: How Can We Provide Lifelong Support for People with Epilepsy to Reduce Their Self-Stigma?

Abstract

Self-stigma denotes the internalization of negative societal attitudes, and it is commonly referred in patients with epilepsy (PWE). Higher levels of self-stigma have been linked to lower self-esteem. According to the author’s research, there is no significant correlation between knowledge level and self-stigma among PWE, and short-term treatment to control seizures alone proves inadequate for reducing self-stigma. These findings provide insights into the enduring nature of self-stigmatization, which appears to be influenced by cultural background, environmental factors, and personal experiences. Firstly, rectifying misinformation is crucial, as it promotes critical thinking and challenges cultural shame rather than accepting it. Secondly, cognitive approaches can be beneficial in helping individuals identify and overcome self-stigmatizing attitudes and beliefs. Recognizing the presence of social stigma and self-stigma are instrumental in reducing self-stigma. Lastly, facilitating individuals fostering a sense of agency in their lives can be accomplished through decision-making and empowerment strategies. Assisting clients in identifying their strengths and enabling them to make autonomous life choices can foster improved self-esteem and decrease self-stigma. While the primary goal of epilepsy treatment is the reduction of seizures, it is crucial for all stakeholders to acknowledge the persistent nature of self-stigma throughout the lifelong treatment trajectory of PWE.

1. Introduction

When considering “epilepsy,” individuals often form mental associations or stereotypes about this medical condition. Stereotypes are constructed and established based on the prevailing social characteristics of the majority within a specific society, generally accepted as factual by most individuals in that society [1]. When individuals endorse negative stereotypes, it develops negative emotions and emotional responses, commonly known as “prejudice.” For instance, someone who believes that people with epilepsy (PWE) pose a danger may experience fear toward individuals with this condition. The issue received significant attention in Japan following the media’s extensive coverage of traffic accidents involving individuals with epilepsy in 2011. As a result, the association between the public image of epilepsy and the concept of danger became more pronounced in 2013 [2].

These emotional reactions can manifest as discrimination, the behavioral response of harboring negative thoughts and feelings toward stigmatized groups. Due to fear (prejudice) and the acceptance of the associated stereotype, the general public may opt to maintain a physical and emotional distance from individuals with epilepsy. Epilepsy-related stigma is prevalent in numerous cultures [3, 4] and is widely recognized as one of the most significant factors negatively impacting the lives of PWE and their families [5, 6, 7, 8].

Among those who feel “stigmatized” by society and live within that society are PWE themselves. Some PWE has stereotypes and self-stigmas about themselves. These include acceptance of self-stereotypes (e.g., “I am a danger to myself with epileptic seizures.”), prejudice (e.g., “I am afraid of myself”), and the accompanying self-discrimination (e.g., social isolation due to self-blame). Internalizing negative stereotypes can trigger adverse emotional reactions, such as low self-esteem and diminished self-efficacy. Self-discrimination, particularly self-isolation, has detrimental effects, including reduced healthcare utilization, poorer health outcomes, and decreased quality of life [9]. Low self-efficacy and self-esteem have also been associated with missed opportunities for employment and independent living [10, 11]. Link et al. referred to this as the modified labeling theory, highlighting that individuals who internalize the stigma of mental illness worsen their condition due to the harm caused by internalized experiences [12, 13]. Self-stigmatization entails a reduction in self-worth and a detrimental impact on one’s aspirations toward personal goals. Consequently, self-stigma emerges as an intrapersonal phenomenon that leads to adverse health outcomes and diminishes the quality of life experienced by individuals diagnosed with epilepsy (PWE) [9, 14].

2. Efforts to reduce the stigma of epilepsy

Epilepsy has been documented as far back as 4000 B.C. and has had severe physical, mental, and social effects on patients for centuries, with no difference in age, race, country, or geographical location [15]. In response to the history of prejudice due to lack of knowledge, preconceptions, and discrimination against epilepsy, in 1997, the International Epilepsy Congress and the WHO, in collaboration with the International League Against Epilepsy (ILAE) and the International Bureau of Epilepsy (IBE), launched an international campaign called “Out of the (Shadows [16]).

The Intersectoral Global Action Plan (IGAP) on epilepsy and other neurological disorders aims to enhance accessibility to care and treatment for people with neurological disorders while concurrently preventing new cases and advocating brain health and development throughout the lifespan [17]. This comprehensive initiative spans 10 years, from 2022 to 2031. Its approval by 193 states on 27 May during the 75th World Health Assembly [17] signifies a decade-long commitment to prioritizing brain health by bolstering policy focus and governance; facilitating effective and timely diagnosis, treatment, and care; implementing strategies for promotion and prevention; fostering research and innovation; and fortifying information systems, as well as enhancing the public health approach to epilepsy [18]. However, to mitigate the societal stigma associated with epilepsy, continued efforts will be necessary to sustain the campaign’s impact.

3. Lifelong support for epilepsy patients to reduce self-stigma

What approaches help reduce self-stigma among people with epilepsy?

To adequately facilitate the reduction of self-stigma, it is imperative to comprehend the intricacies involved in the formation of self-stigma within distinct cultural contexts. The authors have investigated the actual status of self-stigma in epilepsy patients in Japan, developed a measurement scale, and conducted group psychoeducation programs [19, 20, 21]. This paper therefore introduces the studies conducted by the authors and discusses the direction of clinical practice and future research aimed at reducing self-stigma in Japan.

3.1 Self-stigma among epilepsy patients (results of qualitative analysis study)

The authors used semi-structured interviews and their qualitative analysis to analyze elements of self-stigma among Japanese PWE [19]. For historical reasons, epilepsy in Japan is treated by neurology, neurosurgery, and neuropsychiatry. In Japan’s administrative classification, epilepsy is classified as a psychiatric disorder, necessitating the involvement of psychiatrists due to its distinctive features. Analysis of 206 verbatim data obtained from epilepsy patients attending outpatient clinics in Japan resulted in the extraction of 74 codes. Qualitative analysis of these codes identified 22 subcategories of epilepsy-related self-stigma and three major categories: self-stigma, perceived social stigma, and actual distress/troubles. The subsequent paragraphs provide a detailed description of the self-stigma categories derived from the qualitative analysis.

Concerning self-stigma among PWE, negative beliefs are not only negative cognitions about the disease and diagnosis of epilepsy, such as “I am not capable” and “I am a weak person,” but also “I have an image that epileptic seizures are something that makes me foam and fall” and “I will be a burden to others if I have an epileptic seizure.” It was found that these included negative perceptions about epileptic seizures, such as “I will be a burden to others” and “People will feel uncomfortable if they figure out I have epileptic seizures.”

The findings additionally revealed the presence of “negative feelings about epileptic seizures,” exemplified by expressions such as “I do not want to have an epileptic seizure because I will burst into a bubble and collapse” and “It is painful to be seen having an epileptic seizure.” Furthermore, sentiments such as “It is embarrassing to be seen having an epileptic seizure,” “I hate going to a psychiatrist,” and “I have an aversion to seeing a psychiatrist” were also expressed within the dataset. Influenced by these adverse emotional experiences, the patients conveyed challenges encompassing various aspects of the disclosure, including “difficulties in revealing my epilepsy diagnosis to others,” “challenges in disclosing my condition to my family,” “obstacles in informing my teachers about my epilepsy,” “struggles in divulging my epilepsy diagnosis to my workplace,” and “difficulties in communicating my condition to doctors from other medical departments,” among others. The respondents admitted to behavioral changes such as “difficulty in telling my family that I have epilepsy,” “wanting to hide the fact that I have epilepsy,” “not wanting to take my medication in public,” and “wanting to hide the fact that I have epilepsy and have to go to the hospital for treatment.”

The behavioral manifestations of these negative changes were identified to be more prominently evident within the cognitive component, characterized by a “negative evaluation of my life so far,” as opposed to the emotional component, which featured a “decreased general self-confidence.” Additionally, the negative behavioral changes, precisely the “abandonment of various activities due to the presence of epilepsy,” exhibited a lesser degree of recognition compared to the cognitive component.

These findings specifically examine the stigma of epilepsy in Japan, and it is crucial to note that not all of the identified factors may be applicable to other countries or cultures. In particular, the pronounced association with psychiatry may be influenced by the distinctive medical context of Japan. However, those individuals involved in epilepsy care need to acknowledge that patients with epilepsy may experience and endure these self-stigmas associated with the condition.

3.2 Creation of the epilepsy self-stigma scale

The Epilepsy Self-Stigma Scale (ESSS) [21] (Table 1) was developed to measure self-stigma explicitly pertaining to “epilepsy” and to provide a convenient assessment scale suitable for use in a short consultation time. The development of the ESSS involved the utilization of results from qualitative analysis in Japan. Subsequently, the questionnaire was formulated based on the results of a qualitative analysis, and an exploratory factor analysis was conducted based on data obtained from 100 epilepsy patients attending outpatient clinics at multiple medical institutions. As a result, a final questionnaire comprising three factors (Internalization of stigma, Societal incomprehension, and Confidentiality) and eight items was derived. The ESSS items are rated on a four-point Likert-type scale: 1: Strongly Disagree, 2: Slightly agree, 3: Agree, 4: Strongly Agree. Total scores range from 8 to 32. The higher the total score, the greater is the extent of the self-stigma toward epilepsy. The calculation of scores for each factor enables a comprehensive assessment of the relative significance of different dimensions of self-stigma. In addition, high internal consistency has been obtained across the entire scale and all subscales, and high retest reliability and adequate construct validity concerning depressive symptoms and self-esteem. Cronbach’s α for the total scale and each factor demonstrated good internal consistency (α = 0.76–0.87). The ESSS has undergone a prolonged development process, and its utilization in various studies has been relatively limited, resulting in a scarcity of comprehensive information. However, it is noteworthy that no significant correlation was observed between external criteria, such as an objective assessment of self-stigma conducted by the subject’s physician, and the total score on the ESSS, which contrasts with findings from comparable scales. This finding aligns with the conceptualization of self-stigma as internalized stigma and highlights the challenge of accurately assessing a patient’s self-stigma solely within the consultation setting.

	Disagree	Weakly Agree	Agree	Strongly Agree
1. When I hear news about traffic accidents related to epileptic seizures, I feel like I am being told about myself.	1	2	3	4
2. I feel discriminated against by others because of epilepsy.	1	2	3	4
3. I sometimes feel embarrassed about epilepsy.	1	2	3	4
4. I feel different from others because I have epilepsy.	1	2	3	4
5. Ordinary people do not understand my suffering from epilepsy and the worry of seizures.	1	2	3	4
6. Few people have the correct information about the disease of epilepsy.	1	2	3	4
7. It is hard to tell others that I have epilepsy.	1	2	3	4
8. I want to hide the fact that I go to the hospital to receive therapy for epilepsy.	1	2	3	4

Table 1.

Epilepsy self-stigma scale (eight items) [21].

This questionnaire will ask you about what you think about having epilepsy.

For each question, please choose the most appropriate number from the scale to the right of each sentence.

3.3 Efforts to reduce self-stigma in people with epilepsy

3.3.1 Educational needs, psychosocial education programs

The first step in reducing self-stigma is to provide accurate information about PWE and its supporters. Education and awareness can reduce misconceptions and prejudices about epilepsy and promote public understanding and empathy. Education should be targeted not only to PWE and others affected by the disease but also to the general public, teachers, and healthcare professionals. People with epilepsy must understand their condition and learn about appropriate treatment and daily living precautions.

Psychosocial education programs on epilepsy have been conducted in various countries, and their usefulness has been reported [22]. Although psychosocial and educational programs took many forms depending on the country and context in which they were implemented, most interventions improved subjects’ knowledge about epilepsy. For example, the authors conducted the “Epi-school” program in Japan, which yielded notable outcomes [20]. Furthermore, other programs, such as MOSES [23], The Seizures and Epilepsy Education (SEE) Program [24, 25], FLIP & FLAP [26], Be Seizure Smart [27], Children’s (Epilepsy Program [28]), ACINDES [29], and A psychosocial self-management program for epilepsy [30], among others, have also showcased commendable effectiveness in this regard. The PEPE [31] and Ogata’s program in Japan [32] showed significant improvement in knowledge based on subjects’ subjective ratings. The FAMOSES [33, 34] program for young PWE is being implemented in Germany. It is a psychosocial educational program for children with epilepsy and their families. It is imperative to teach PWE of young origin to know about epilepsy with a view to the future in order to support epilepsy treatment throughout their lives.

The authors implemented a program named “Epi-school,” which targeted individuals diagnosed with epilepsy (PWE) aged 16 years and older and their supporters within the outpatient psychiatry department of a university hospital. The program dealt with the epidemiology and fundamental knowledge of epilepsy, diagnosis and treatment of epilepsy, self-control and prognosis of epilepsy, and psychosocial aspects. The program was managed by two fixed trainers (an epilepsy specialist and a psychiatric nurse specialist) and a multidisciplinary team, including a pharmacist, a psychologist, and a mental health worker, depending on the content of each session. In addition to significant increases in knowledge about epilepsy for patients and relatives before and after the program, positive changes were observed in overall life satisfaction and psychological acceptance of epilepsy as an optimistic illness. In addition to enhancing disease-related knowledge and coping mechanisms, numerous participants also expressed observations regarding alterations in the psychological aspects of the disease. Further research is warranted to examine the changes in the self-stigmatization levels of PWE before and after the psychosocial education program.

3.3.2 Psychological support

Epileptic seizures may cause emotional distress and social isolation in PWE. Psychological support is essential to reduce self-stigma, and psychotherapy and counseling, in particular, may promote patients’ mental health and reduce self-stigma. Psychological support includes counseling, acceptance and commitment therapy (ACT) [35, 36], cognitive behavioral therapy (CBT), relaxation methods, mindfulness, and motivational interviewing. Some psychosocial education programs mentioned in the previous section also offer psychosocial and psychological support.

Psychological support may be provided within psychosocial education programs, but individual psychotherapy and psychotherapy may benefit PWE who experience self-stigma, even in settings where dedicated psychosocial programs are unavailable.

3.3.3 Support groups, self-help groups

Support and self-help groups are places where people with the same illness can share information and experiences. For PWE, support and self-help groups can reduce feelings of isolation and anxiety by letting them know that others are going through similar experiences. Patients can increase their self-acceptance and reduce self-stigma by participating in support groups. In the context of self-help groups dedicated to epilepsy worldwide, enormous organizations have been established in various countries, including notable examples such as the Japan Epilepsy Association [37], the Epilepsy Foundation [38] in the United States, Epilepsy Action [39] in the United Kingdom, and Epilepsy Action Australia [40] in Australia. These organizations offer a range of information, consultation services and support activities pertaining to epilepsy. However, it is worth noting that the number of organizations operating on a global scale remains limited.

From the authors’ survey, in Japan, the use of psychosocial support, that is, participating in epilepsy self-help groups and educational programs, was 5.8% [41]. As a reason for not participating in self-help groups, PWE in Japan worry that they might be discriminated against by society for participating in such groups. In order to effectively address and mitigate self-stigmatization experienced by PWE throughout their lifespans, it is vital to create an environment where PWE feel at ease engaging in self-help groups and study groups. Thus, constant efforts must be directed toward reducing the societal stigma associated with epilepsy and preventing the emergence of new self-stigmatizing beliefs among PWE.

4. Conclusion

This paper introduces the present situation regarding the stigma of epilepsy in Japan and attempts to reduce it, inspired by the authors’ research findings. Healthcare professionals involved in epilepsy care must take positive action to prevent the continuation of inadequate knowledge, superstition, and prejudice. Research on self-stigmatization in relation to epilepsy remains limited, underscoring the necessity to develop assessment tools and intervention strategies informed by cross-national findings while accounting for cultural nuances and the specific circumstances surrounding the management of epilepsy in individual countries.

It is imperative to acknowledge that Goffman, the pioneer of the stigma concept, emphasized the significance of understanding stigma as a “relationship” rather than a mere attribute of an individual. This perspective holds spectacular importance in epilepsy, as it is insufficient to perceive epilepsy stigma solely as a characteristic of the individual with epilepsy. Consistent with Goffman’s original proposition, it is crucial to conduct research that delves into the process of stigma formation within the psychosocial context of interactions between individuals with epilepsy and their immediate environment and the broader society.

We hope that developing the Epilepsy Self-Stigma Scale (ESSS) and psychosocial education programs presented here will assist this effort and further expand research activities to reduce self-stigma in PWE.

Acknowledgments

We appreciate Dr. Lester Luo’s invaluable assistance in editing this manuscript in English.

Funding

This work was supported by the 31st Ochiai Memorial Award Research Grant (2020) and JSPS KAKENHI (No. 21 K13709) and the Maruki Memorial Special Award Research Grant (2022, No.22-1A-01). The funding source was not involved in the design of this study, the writing of this report, and the decision to submit the manuscript for publication.

Declaration of competing interests

None.