Throughout history, epilepsy has been a misunderstood and highly stigmatized disorder. The word itself comes from ancient Greek and refers to “being seized by forces from without,” a reference to the supposed supernatural origins of the disease.¹ Divine retribution, demonic possession, and contagion have been common explanations for seizures, and until the late 1800s, people with epilepsy (PWE) were often incarcerated as “criminally insane.”

Over time, negative attitudes toward PWE have diminished,² yet a significant proportion of the population remains uninformed and stigma is still a major source of stress and limitations for PWE. The Global Campaign Against Epilepsy (GCAE): Out of the Shadows, a joint venture from the World Health Organization, the International League Against Epilepsy, and the International Bureau of Epilepsy, was established in 1997 with the mission of improving acceptability, treatment, services, and prevention of epilepsy worldwide.³ Perhaps appropriately, the primary focus of the GCAE has been in the developing world, where the stigma and dearth of knowledge concerning epilepsy have been the most severe. There is a large literature on the subject and some improvements for PWE living in these regions of the world.

By comparison, in Western developed countries, the degree of misconceptions and stigmatizing attitudes is unclear, even with national laws such as the Americans with Disabilities Act (ADA) and Individuals with Disabilities Education Act (IDEA). Relatively less effort has focused on the myths and misconceptions surrounding epilepsy in modern Western society, the impact on PWE, and means to overcome these misconceptions and stigma.

The Institute of Medicine (IOM) highlighted epilepsy stigma as an important priority, stressing the continuing negative effects of stigma on PWE.⁴ Stigmatized PWE have lower self-esteem, greater social isolation, poorer psychological health, lower quality of life, and worse epilepsy control.^5–10 The IOM noted some specific public health initiatives to reduce stigma associated with epilepsy and other conditions, but there is still substantial room for improvement and adaptation of other successful approaches, such as stigma reduction initiatives for mental health disorders need to be considered ^11–13 Initiatives to reduce mental health stigma can potentially inform new strategies to change attitudes and facilitate a supportive, positive, and socially inclusive environment for PWE.

We sought to understand the recent literature on misconceptions and stigma surrounding epilepsy in Western societies and to identify key information relevant to understanding and modifying these misconceptions in order to limit stigma in our own society. To this end, we conducted a literature review focused on epilepsy stigma over the last decade and identified key epilepsy stigma themes in these studies. We were especially interested in research that evaluated epilepsy stigma reduction interventions and summarized the specific formats and health communication approaches in which the stigma-reduction interventions were delivered.

Our investigations involved three levels of literature review all focused on manuscripts published from 2004 to January 2015 to ensure contemporary relevance: 1) A survey of the original reports on epilepsy stigma with emphasis on country or region of the world of origin; 2) A systematic review of those original reports that addressed misconceptions and attitudes of the general public (people without epilepsy) toward PWE in Western countries; and 3) A focused assessment of articles presenting interventions specifically designed to reduce epilepsy stigma in Western settings.

Findings from this literature review on epilepsy stigma and stigma-reduction efforts suggests that although there is a substantial literature on misconceptions, negative attitudes, and stigma surrounding epilepsy from developing and non-Western countries, there is a relative paucity of recent information from the Americas, Europe and Australia, and a very limited literature on stigma-reduction strategies in these settings. Most of the literature relies on responses to the same kinds of questions from decades ago, which reflect what we would today consider unacceptable forms of negative attitudes, especially in our post-ADA society. Notably, we found relatively little utilization of qualitative methods to elicit new information that could then be used in innovative intervention programs. Key findings of this literature review and implications for future work are noted in Figure 3.

Key epilepsy misconception themes in the research literature over the past decade include limitations on normal social roles (socializing with PWE, marriage, children, employment), conditions associated with epilepsy (cognitive and behavioral difficulties and disabilities), personal characteristics of PWE (unreliable, dangerous), restrictions placed on activities (driving, sports), and inaccurate beliefs regarding the causes, treatment, and prognosis of epilepsy. Unfortunately, we could not compare the frequency and nature of misconceptions across population subgroups because of extensive variability in study design and methods.

Most published studies on epilepsy misconceptions and stigma used standardized instruments that relied upon closed-ended questions. Some epilepsy misconception questions in published reports were worded such that they invited over-generalization of items that can be true for some individuals and turned them into blanket statements about all PWE. For example, saying “epilepsy can kill” is an important message for PWE who are at risk of Sudden Unexpected Death in Epilepsy (SUDEP).⁶³ However, portraying epilepsy as a lethal condition is unlikely to reduce stigma. For example, one could imagine that employers might be less likely to hire PWE if they think a person can die while having a seizure at work. Although PWE can have a variety of cognitive difficulties, most of these are relatively subtle and can be managed with appropriate compensatory approaches. Few studies used open-ended or qualitative methods that might provide a finer-grained understanding of current misconceptions and stigma. To arrive at different answers, it is important to ask new questions.

In the Americas, Australia, and Europe only a dozen interventional studies have been reported over the past decade targeting the general population which does not have epilepsy. Although the interventions in the 12 studies examined in this review improved attitudes about epilepsy, interventions were limited to healthcare and education settings and were time intensive and impractical to implement for the broad population.

This review suggests that published evidence on ways to best reduce epilepsy stigma in the general population is extremely limited. Summary findings demonstrate that both epilepsy knowledge and epilepsy attitudes can be improved with directed effort. While nearly all interventions appeared effective in improving epilepsy knowledge and attitudes in their respective target population, interventions mainly were intended for use in classroom or healthcare settings and used didactic delivery approaches that would not be expected to be practical or scale-able for the general population. Most importantly, their enduring impact was not assessed.

Given the paucity of evidence-based epilepsy stigma-reduction interventions, it may be reasonable to look at other stigmatizing disorder as to how future research might be operationalized. A mental illness stigma intervention protocol ⁶⁴ suggests anti-stigma interventions should examine the effect on stigma and discrimination of people with mental illness as well as their caregivers. A similar research protocol would be applicable for research on stigma among people with epilepsy.

In marked contrast to the limited number of published research studies that tested interventions to address epilepsy stigma, there has been extensive work, most notably conducted by advocacy groups such as the Epilepsy Foundation (EF) and government agencies such as the Centers for Disease Control and Prevention (CDC), to implement public awareness campaigns that broadly address epilepsy awareness ^{65; 66} and which are intended to improve understanding, promote social inclusion, and reduce stigma. Subsequent to our literature review, Price and colleagues published a comprehensive summary of multi-faceted public education awareness campaigns that have been implemented in the U.S. from 2001–2013.^{65; 67} Targeted educational efforts by CDC and EF support groups such as school nurses, first responders, school staff, and adult day-care personnel.⁶⁸

Consistent with recommendations by Corrigan⁶⁹ suggesting that stigma reduction is most likely to be effective when it is targeted toward specific populations, has local relevance, and uses people from the targeted population to deliver the message, the EF and CDC campaigns targeted important subgroups including Tweens, African-Americans, Hispanic-Americans and Asian-Americans using communication approaches that leveraged the strength of mass and social media and included multiple formats such as audio and video release, celebrity endorsement and community events. A key feature of the public campaigns implemented thus far is their extraordinary reach. For example, the “26 Days of Epilepsy Awareness and Action” campaign in 2012–213 was delivered to more than 3 million individuals, including 1.9 million Asian-Americans. However, an important limitation of these public awareness efforts is that impact data mainly consisted of process outcomes that provided information on reach or uptake of the information (number of website visits, attendance, etc.) rather than specific effects of these efforts on epilepsy misconceptions and stigma.⁶⁵

Health communication approaches used in interventions identified in this review used mainly lectures and videos. However, information provided through these means does not extend beyond the audience directly receiving the information. Effective health communication approaches need to engage individuals and communities in formats that are easily accessible and ideally without cost. Mass and multi-media health information can be delivered and shared at a rapid pace and potentially a larger audience. Future efforts to specifically target and reduce epilepsy stigma will almost certainly need to use technology-based approaches such as social media which might be expected to appeal to younger audiences. Novel communication technologies, including social network sites, text messaging, podcasts, blogs, and videos uploaded by organizations and Internet users are all potentially fruitful areas of investigation.⁷⁰ The ease of user “sharing” of web-based content allows for the continual spread of information. Since none of the epilepsy intervention studies in this review used novel health communication mediums, these new mediums need to be tested.

In addition to the format of communication channels utilized, it is important to consider the message being communicated. Protest against stigma, which involves identifying instances of incorrect ideas or discrimination and speaking out against them, can result in worse discrimination because of the increased focus on instances where it occurs.⁶⁹ Additionally, both cognitive beliefs (what a person believes is true/not true about PWE) and emotional responses that include fears about safety or risk can influence intentions for behavior that may result in avoiding PWE. ^{71; 72} Decision Theory posits that people have difficulty refuting negative information. Instead, correct positive information should be provided. ⁷³ As an example, the statement “people with epilepsy aren’t stupid” plants the connection of epilepsy with stupidity in the listener’s mind. A preferred approach is to remain positive and avoid negative connections such as the statement “Most people with epilepsy are bright, engaged, and living full lives.” Emotions are potent drivers of decision-making^{74; 75} and positive emotional content, such as health communication approaches that emphasize caring, inclusiveness and altruism are known to be effective in shaping attitudes. ^{76; 77}

Our literature search was focused on studies published in 2004–2015. As with any search, we may not have identified all pertinent articles, and our search and review strategy may have introduced some bias. Furthermore, while we identified similar themes across studies, findings from non-U.S. studies might not generalize to the U.S. population. A limitation common to most of the studies we reviewed is “social desirability bias,” meaning that respondents may provide answers that they feel are socially appropriate, but not necessarily reflective of true attitudes and behavior. This could explain some of the subtle discrepancies among answers within the same questionnaire, such as the fact that individuals endorsed having positive attitudes towards PWE, but would still not disclose having epilepsy if they themselves had epilepsy. There are only a limited number of epilepsy stigma-reduction interventions and the relatively narrow audience focus of the existing interventions limits an approximation of how they might perform in general population samples.

As our review findings illustrate, types of epilepsy misconceptions were similar in reports published over the last decade, although most referred to misconceptions that have already been previously described. While some factors associated with stigmatizing misconceptions are non-modifiable, having no familiarity or exposure to a PWE appears associated with more misconceptions and may be an avenue for intervention within specific subgroups. There are remarkably few published research studies which specifically tested epilepsy stigma-reduction efforts. Techniques that re-frame stigmatizing beliefs, create positive affective reactions and can be implemented on a broad and easily-accessible population-level should be incorporated into the next generation of approaches to reduce epilepsy stigma.