8

Public Education and Awareness

A principal goal for epilepsy education and awareness programs for the public at large is to combat stigma, in the hope that this will lead to improved quality of life for people with epilepsy. Misinformation and misperceptions regarding epilepsy have a long history and are still prevalent throughout society. Although some surveys suggest that attitudes toward people with epilepsy have improved over time, it is not certain how contemporary attitudes compare and whether the overall improvements have affected behavior. People acquire information about epilepsy from many sources, including family and friends, entertainment and news media, the Internet, and social media. However, the accuracy of these sources is variable. Public campaigns have been conducted by the Epilepsy Foundation since the 1970s, including efforts to reduce stigma, but their long-term impact on attitudes is unknown. Advocacy campaigns for other health conditions provide a variety of lessons and best practices for the epilepsy community; some efforts have effectively used carefully selected spokespeople and have achieved important policy changes. Actions needed to improve public awareness and knowledge include informing journalists as well as writers and producers in the entertainment industry; engaging people with epilepsy and their families in public awareness efforts; coordinating public awareness efforts and developing shared messaging; and ensuring that all campaigns include rigorous formative research, considerations for health literacy and audience demographics, and mechanisms for evaluation and sustainability.



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8 Public Education and Awareness A principal goal for epilepsy education and awareness programs for the pub- lic at large is to combat stigma, in the hope that this will lead to improved quality of life for people with epilepsy. Misinformation and misperceptions regarding epilepsy have a long history and are still prevalent throughout soci- ety. Although some surveys suggest that attitudes toward people with epilepsy have improved over time, it is not certain how contemporary attitudes com- pare and whether the overall improvements have affected behavior. People acquire information about epilepsy from many sources, including family and friends, entertainment and news media, the Internet, and social media. How- ever, the accuracy of these sources is variable. Public campaigns have been conducted by the Epilepsy Foundation since the 1970s, including efforts to reduce stigma, but their long-term impact on attitudes is unknown. Advo- cacy campaigns for other health conditions provide a variety of lessons and best practices for the epilepsy community; some efforts have effectively used carefully selected spokespeople and have achieved important policy changes. Actions needed to improve public awareness and knowledge include inform- ing journalists as well as writers and producers in the entertainment industry; engaging people with epilepsy and their families in public awareness efforts; coordinating public awareness efforts and developing shared messaging; and ensuring that all campaigns include rigorous formative research, consider- ations for health literacy and audience demographics, and mechanisms for evaluation and sustainability. 383

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384 EPILEPSY ACROSS THE SPECTRUM Most of my life, I have been scared to talk about my epilepsy. Why? Because I was scared what others would think. Society does isolate, even discriminates against people with epilepsy. –Louis Stanislaw Through my relatively brief span of living with epilepsy, I have encoun- tered a large number of individuals who feel very ostracized and excluded from the general public. This emotion can lead to some tragic outcomes. I did get to know one man, approximately my age, who actually took his own life as a result of this apprehension. . . . He repeatedly had mentioned the fear his two teenage daughters had to be seen with him, lest a seizure should occur. Another individual whom I had met was a young lady who was also facing the struggles with epilepsy. I do recall her saying that she “simply wanted someone to go out to eat with or even just to see a movie.” –Mark Brooks W hy does it matter whether the public at large knows much about the epilepsies? Earlier chapters of this report have explored what health professionals need to know to care for their pa- tients with epilepsy and how knowledge is vital to people with epilepsy and their families for them to attain their maximum health and quality of life. But why should the public be a target for epilepsy information? People have harbored misunderstandings and passed on misinforma- tion and misperceptions about epilepsy and seizures for centuries. This misinformation has stimulated prejudice and discrimination against people with epilepsy, has caused them to be stigmatized and ostracized, and has compromised their ability to work and have an active social life (Bandstra et al., 2008; Eadie and Bladin, 2001; Jacoby et al., 2004, 2005a,b). Stigma is so prevalent that people with epilepsy may experience “felt” stigma, being ashamed of their condition and afraid to be open about it because of the negative reactions they anticipate may ensue. Stigma adds to the burden of the condition and significantly affects health and quality of life. To the extent that public awareness and information efforts can lay these misunderstandings to rest, correct misinformation, and provide accurate information and an understanding of the “human face” of people with epilepsy, they also may engender more positive attitudes—and, ultimately, behavior—toward people with this common condition. The stigma of epilepsy has evolved over the centuries, with “enacted” stigma (e.g., overt prejudice and discrimination) becoming less common in developed countries (Jacoby et al., 2005b; Reis and Meinardi, 2002). How- ever, beliefs that epilepsy is caused by evil spirits, witchcraft, or weakness persist in some cultures and regions of the world (de Boer, 2010). Surveys indicate that some people in the United States consider epilepsy a mental health condition or believe that it may be contagious (Austin et al., 2002; DiIorio et al., 2004; LaMartina, 1989; Sirven et al., 2005). Some cultures

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385 PUBLIC EDUCATION AND AWARENESS represented in the United States may attribute health conditions such as epilepsy and its seizures to supernatural or divine causes, and people in these communities who have epilepsy may face increased stigma and unique challenges in obtaining medical care (Fadiman, 1997). This chapter focuses on the U.S. public’s knowledge, attitudes, and beliefs concerning epilepsy: how the public receives information, campaigns to improve knowledge and reduce stigma, and goals for public awareness and education initiatives. The chapter also highlights the influential role of the news and entertainment media. As Coelho (2006) noted in an editorial in Epilepsy and Behavior, “The cloud grows darker each time the media . . . portrays epilepsy in a way that highlights myths, misconceptions and misunderstanding” (p. 3). The committee’s vision for appropriate public awareness and knowl- edge of epilepsy focuses on an improved public understanding of what epilepsy is—and is not—that supports the full inclusion of people with epilepsy at all levels of society. PUBLIC KNOWLEDGE, ATTITUDES, AND BELIEFS ABOUT EPILEPSY1 People with epilepsy who are stigmatized can endure devastating con- sequences, including lower self-esteem, social anxiety, discrimination, isola- tion, reduced access to care and resources, and negative health outcomes. Some studies suggest a relationship between stigma and reduced seizure control, psychopathology, and reduced quality of life (Hermann et al., 1990; Jacoby, 1994, 2002; Jacoby et al., 2005b; Whatley et al., 2010), and many of the psychosocial challenges experienced by people with epilepsy are also associated with stigma (Austin et al., 2002; Bandstra et al., 2008; Jacoby and Austin, 2007; Jacoby et al., 2004, 2005b). People with epilepsy may hide their symptoms from others and even delay seeking care, as found in interviews with African American women with epilepsy (Paschal et al., 2005) and in a survey of Midwestern neurolo- gists (Hawley et al., 2007). Many people with epilepsy fear that openly discussing their diagnosis will result in the loss of relationships, driving privileges, jobs, and more. Society reinforces these fears because of a lack of public knowledge and awareness, belief in misperceptions surrounding epilepsy and seizures, and negative attitudes and behavior that marginalize 1 The committee recognizes that a significant amount of work has been conducted on public knowledge, attitudes, and beliefs internationally (e.g., Chomba et al., 2007; Kim et al., 2003; Le et al., 2006; Njamnshi et al., 2009; Tekle-Haimanot et al., 1991; Yoo et al., 2009). For the purposes of this chapter, the discussion focuses primarily on work conducted in the United States and other developed nations having relatively comparable educational levels, health care availability, and media enterprises.

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386 EPILEPSY ACROSS THE SPECTRUM people with epilepsy (de Boer et al., 2008; Fernandes et al., 2011; Jacoby, 2002; MacLeod and Austin, 2003; Morrell, 2002; Paschal et al., 2005; Taylor et al., 2011). Survey research suggested that attitudes toward people with epilepsy in the United States improved in the decades leading up to 1980. The au- thors of a historic study, which summarized findings from seven Gallup surveys conducted over a 30-year period from 1949 to 1979, attributed the improved attitudes to educational efforts, improved control of seizures, employment of people with epilepsy in major industries, and policy and legal changes that protect against discrimination and improve opportuni- ties for people with epilepsy (Caveness and Gallup, 1980). However, in a 1987 survey of U.S. adults conducted by Gallup, nearly half (49 percent) of respondents could not identify a cause of epilepsy, only 19 percent said it was a brain disorder, and one in six believed it was a mental health condi- tion (LaMartina, 1989). Results from nine questions included on the 2002 HealthStyles Survey2 indicated that one-fourth of respondents believed they were knowledgeable about epilepsy, and about 30 percent said they knew someone with epilepsy, but this was not associated with improved knowledge about the condition. Only slightly more than one-third knew what to do if someone had a seizure, and most people reported that their information about epilepsy came from family, friends, or television (Kobau and Price, 2003). Studies conducted in other countries, including Italy, New Zealand, and Denmark, have identified a need for improved knowledge and attitudes about epilepsy (e.g., Canger and Cornaggia, 1985; Hills and MacKenzie, 2002; Jensen and Dam, 1992), while also documenting some progress. The United Kingdom’s Omnibus Survey has found that respondents are gener- ally well informed, with about 90 percent expressing positive attitudes on several stigma questions. However, one-fourth of respondents tended to agree or strongly agree with a statement that people with epilepsy have “personality problems,” and more than half agreed that they are treated differently by society (Jacoby et al., 2004). The authors nevertheless con- cluded that the trend appears to be moving in a positive direction, with the public more likely to “value rather than reject human differences” (p. 1412). They noted that the transition away from epilepsy being considered within a moral domain (focusing on misperceptions of “badness”) and toward epilepsy being identified within the medical model (emphasizing a brain disorder amenable to treatment) may have contributed to this change, 2 The HealthStyles Survey is a nationally representative mail survey conducted by Porter Novelli through a partnership with the Centers for Disease Control and Prevention that in- cludes questions on consumer topics such as media habits, product use, lifestyle habits, and health topics.

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387 PUBLIC EDUCATION AND AWARENESS and they called for research to design strategic communications campaigns that target negative attitudes. Similar findings were noted in analyses of opinion polls conducted in 1994 and 2000 in Hungary, with a notable trend toward acceptance of people with epilepsy in the second survey, which followed the Out of the Shadows global campaign on epilepsy (Mirnics et al., 2001). Positive attitudes about epilepsy and people with the disorder were highlighted in a survey conducted in New Zealand, and the authors attributed these findings, in part, to public education efforts and the work of the Epilepsy Association of New Zealand (Hills and MacKenzie, 2002). Although these surveys suggest possible improvements in attitudes toward people with epilepsy and generally point to the success of public education efforts, there remains a troubling lack of basic knowledge about the condition. Further, misperceptions about epilepsy remain remarkably common and fuel negative attitudes and, ultimately, stigma (Bandstra et al., 2008; de Boer, 2010; Kilinç and Campbell, 2009; Paschal et al., 2007). A large-scale, population-based survey specific to epilepsy has not been conducted in the United States in many years, so gaps in knowledge about contemporary attitudes and beliefs may exist. As noted in Chapter 6, ques- tions have been raised about the ability of surveys to accurately measure attitudes due to participants’ tendencies to provide socially desirable re- sponses, especially when they are aware that their responses are being used to measure their attitudes (Antonak and Livneh, 1995; Baumann et al., 1995; Bishop and Slevin, 2004; Caixeta et al., 2007). However, a number of tools for measuring stigma have been developed and validated in the last decade (described below) and offer potential for studying current attitudes, beliefs, and stigma. Measuring Stigma Tools have been developed and tested and numerous studies have been conducted to measure stigma among target audiences. The Centers for Dis- ease Control and Prevention’s (CDC’s) ABLE (Attitudes and Beliefs about Living with Epilepsy) instrument is a 46-item scale that measures attitudes of the public on four dimensions related to epilepsy: “negative stereotypes, risk and safety concerns, work and role expectations, and personal fear and social avoidance” (DiIorio et al., 2004, p. 970). Kobau and colleagues (2006) used the ABLE instrument to describe differences in negative stereo- types and risk and safety concerns in subgroups of the U.S. population. This instrument recognizes that attitudes are complex and multidimensional and can range from a general lack of knowledge and uncertainty to concern, worry, and fear about epilepsy, seizures, and people with epilepsy. These attitudes, in turn, have an impact on behavior and stigma. A short-form

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388 EPILEPSY ACROSS THE SPECTRUM EXAMPLES OF SURVEY ITEMS FROM THE ATTITUDES AND BELIEFS ABOUT LIVING WITH EPILEPSY Box 8-1 INSTRUMENT 1. would be nervous around a person with epilepsy because they might have I a seizure. 2. I believe people with epilepsy are unreliable. 3. I would consider a divorce if my spouse were diagnosed with epilepsy. 4. I believe people with epilepsy are not as smart as those without epilepsy. 5. I believe people with epilepsy should not marry. 6. I believe people with epilepsy are possessed by a supernatural spirit. 7. I would be uncomfortable being around a person with epilepsy. 8. I would not want to work with someone who has epilepsy. 9. I would not want my child to date someone with epilepsy. 0. I would be afraid to be alone with someone who has epilepsy. 1 11. I would avoid a person with epilepsy who has frequent seizures. 12. I would be embarrassed if someone in my family had epilepsy. SOURCE: DiIorio et al., 2004; Personal communication, R. Kobau, CDC, March 16, 2011. version of the ABLE instrument, which includes 12 questions (see Box 8-1) drawn from the original 46-item scale, was developed to further examine negative stereotypes and general discomfort and avoidance. If feasible, the CDC plans to support data collection using items from the ABLE instru- ment to capture current attitudes toward epilepsy and assess the current level of epilepsy stigma (Personal communication, R. Kobau, CDC, March 16, 2011). Brazilian researchers developed the Stigma Scale of Epilepsy, which is used to assess perceptions about epilepsy held by people with epilepsy and people in the community who do not have epilepsy (Fernandes et al., 2007, 2009). In a 2006-2007 study based on this scale, involving students at a summer camp, the word “epileptics” and the phrase “people with epilepsy” were used in questionnaires about perceived rejection, perceived difficulties in obtaining employment, perceived difficulties at school, and the respon- dent’s prejudice toward such people. The findings, which showed that the term “epileptics” generated higher scores on stigma measures, underscore the important influence that language and terminology have on stigma perceptions (Fernandes et al., 2009). Another mechanism that has been used to measure stigma involves interviews with people with epilepsy and their caregivers (Kilinç and Campbell, 2009; Wagner et al., 2009). In these situations, people with epi- lepsy are viewed as experts on their condition and discuss their own lack of knowledge, the lack of knowledge about epilepsy and stigma among

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389 PUBLIC EDUCATION AND AWARENESS the general public and school personnel, and their recommendations for responses to medical, educational, and social challenges. These tools and other validated mechanisms need to be used to measure and track improvements in the public’s knowledge and acceptance of people with epilepsy in society. A more precise understanding of how the public learns about epilepsy (and health generally) will help to inform interven- tions intended to produce the desired attitudinal and behavioral changes. HOW THE PUBLIC RECEIVES INFORMATION ABOUT EPILEPSY Healthy People 2020 ascribes an important role to the communications media in shaping the public’s views on health and disease. “Health commu- nication and health information technology (IT) are central to health care, public health, and the way our society views health” (HHS, 2011). Health information—of varying accuracy—is widely available and frequently con- sulted through a range of sources in today’s crowded media marketplace; this information plays a significant role in influencing knowledge, attitudes, and beliefs about epilepsy. Sources of epilepsy information include print, broadcast, and cable or satellite media; Internet websites such as YouTube and Facebook; and a diverse group of health and non-health organizations that conduct campaigns and host websites, such as the Epilepsy Founda- tion, the CDC, and TalkAboutIt.org. Additional sources of information include health care providers, family members, friends, and colleagues in professional and community settings. In a discussion of the 2002 HealthStyles Survey findings, the authors noted that fictional depictions of seizures, such as those on television, typi- cally portray severe tonic-clonic seizures (Kobau and Price, 2003). These vivid depictions may frighten the viewing public and foster the develop- ment of negative social attitudes. More than half of all survey respondents reported that they have seen a seizure on television, with adults under 35 more likely than other age groups to have seen one. Thus, television writers and producers are a critical audience for epilepsy education efforts. Despite the influence of writers and producers on public attitudes and beliefs about epilepsy, they may not be well informed about epilepsy or the potential impact of their story lines on viewers. The media preferences and habits of youth and adolescents are key to planning interventions that foster more positive attitudes and beliefs in this age group. Since 1999, the Kaiser Family Foundation has tracked media use by youth ages 8 to 18 (Rideout et al., 2010). The 2009 survey found clear evidence that older youth spend more time with media of all types than in the past, totaling nearly 12 hours a day (Rideout et al., 2010). Since 2004, the largest increases in media use by older youths are for television and video games. Use of print media (books and newspapers) has declined

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390 EPILEPSY ACROSS THE SPECTRUM slightly, while hours viewing movies in a movie theatre have remained constant. Ownership of mobile media (e.g., smartphones, MP3 players, laptops) has increased significantly since 2004 (Rideout et al., 2010). These mobile devices are creating a shift in how youths in the United States access entertainment and information; youth are still watching television shows, but they are increasingly using computers, phones, and other mobile devices (e.g., iPads or tablet computers) to stream them (Stelter, 2012). The sheer variety of media used—and, even for a single medium such as television, the variety of channels available—splinters this audience and makes it difficult to design a campaign that would have substantial reach. A recent Nielsen report indicates that the Internet is becoming a larger part of everyday life and a means for streaming entertainment, including television shows, for many people (Nielsen Wire, 2012). Moreover, the rise in popularity of social media (e.g., Facebook, Twitter) requires completely different content and tactics than the radio and television “public service announcement” campaigns of past decades. Of those who use the Internet, 65 percent of U.S. adults and 83 percent of those ages 18 to 29 now use social networking websites (Pew Internet and American Life Project, 2011). The Internet as a Source of Information About Epilepsy The Internet is the leading source for health information, primarily for consumers who are actively seeking more information regarding a diagnosis for themselves or someone they know (Sarasohn-Kahn, 2008). It is estimated that more than 100,000 websites are directly health related (McNeil et al., 2012). Information retrieved on the Internet also may influ- ence people who access it for entertainment and social networking purposes and are passively exposed to health-related content. Depictions of epilepsy and seizures on the video-sharing website YouTube offer both challenges and opportunities for reducing stigma. In August 2011, YouTube attracted nearly 128 million of the Internet’s es- timated 215 million users in the United States (Nielsen Wire, 2011b). The website hosts epilepsy-related videos that show physiology lectures, diaries, and a variety of seizure types, with “real-life” videos of seizures having vastly more hits than the informational videos (Lo et al., 2010). In a content analysis of viewer comments about the 10 most-watched epilepsy videos in 2007 (from 8 amateur and 2 professional producers), researchers found information-providing comments far more common than information-seeking comments, with a high rate of inaccuracy. While many viewers expressed empathy, many others found the seizures comedic. One video showed a fake seizure in a mall, with people walking by or stopping to stare, but not attempting to help or seek aid. The study’s authors called for more effective public education through more accurate YouTube videos

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391 PUBLIC EDUCATION AND AWARENESS to counter the stigma and misperceptions about epilepsy reflected in user comments. The authors proposed that YouTube might be an appropriate venue for public education because the website’s largely youthful audience may be amenable to change. However, new videos must be entertaining as well as educational to attract this audience. TalkAboutIt.org is an example of a website that features entertaining and informative videos designed to educate viewers about epilepsy. The website was developed by the parent of a person with epilepsy to encour- age dialogue among individuals, family members, and the general public. Content for the site was created with support and input from members of the epilepsy community, and it involves celebrity spokespeople. The premise is that greater knowledge will lead to more positive attitudes, beliefs, and behavior toward people with epilepsy. The interactive site allows visitors to “travel along a subway” where they hear from celebrities, learn about epilepsy and how it affects families, encounter common misperceptions that are subsequently dispelled, and are given credible resources for more infor- mation. The interactive technology and graphics, along with the celebrities and engaging website design, create an appealing and entertaining learning environment. Future educational efforts would benefit from an evaluation of this website’s reach and effectiveness in correcting misinformation and changing attitudes. As mentioned previously, social media are significant vehicles for in- formation sharing that reach large audiences. There is growing interest in how social media can be used to disseminate messages related to health promotion, medical advances, and health education. McNeil and colleagues (2012) conducted a review of seizure-related messages (tweets) posted on the social networking website Twitter during a week-long sample period. The study was conducted to understand how the public uses the term “sei- zure” and how seizures are characterized and to determine the potential for information dissemination. The review analyzed more than 5,000 mes- sages and determined that 41 percent of the tweets that referred to seizures were derogatory or had negative connotations, and only 12 percent were informative3 in nature. The authors concluded that, while social media and social networking websites provide an opportunity to share accurate information, a significant portion of the current usage disseminates negative messages about seizures and perpetuates negative attitudes, stereotypes, and stigma (McNeil et al., 2012). The study’s authors reiterate the existence of negative attitudes and stigma and the need for additional public education. 3 The accuracy of the information included in the messages that were classified as informative was not assessed. Authors indicated that additional work is needed to assess whether these informative messages may be propagating misinformation (McNeil et al., 2011).

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392 EPILEPSY ACROSS THE SPECTRUM Television and Film as Sources of Information In addition to the Internet, television and film remain popular media where viewers frequently receive information about health-related topics, including epilepsy, primarily in the form of news and entertainment shows, documentaries, and movies. In the 2001 HealthStyles Survey, more than half of respondents who were regular television viewers reported that they learned something about a health topic from a television story line, with black and Hispanic viewers reporting more resulting actions (e.g., discus- sion with others, seeking more information, doing something to prevent a problem, telling someone to do something, calling a health care provider) than white viewers (CDC, 2011). Discussion with others about the health topic included in the story line was the most common action taken by all groups of viewers, suggesting that televised information can penetrate be- yond the viewing audience. Educating the Public Through Television Story Lines A variety of health topics have been featured in story lines—including obesity, breast cancer, organ donation, syphilis, and human immunodefi- ciency virus (HIV)—with the goal of producing positive impacts on audi- ences. Increases in awareness, knowledge, discussions with other people, information seeking, and healthy behaviors and practices have been mea- sured as a result of exposure to these story lines. • At the same time as public health campaigns on obesity and healthy eating, an obesity story line was featured on the television drama ER that included an overweight African-American teenage male character with hypertension. Surveys conducted after this story line aired found a significant increase among some viewers in self- reported healthy behaviors (e.g., walking or other physical activity, having blood pressure checked, eating more fruits and vegetables). The greatest changes were among men, who had lower levels of nutrition knowledge pre-test than women (Valente et al., 2007). • A breast cancer story line included on a Spanish-language tele- novela (soap opera) resulted in increased knowledge among view- ers, with a significant increase in the number of male viewers who said that they would suggest that a woman they knew should have a mammogram (Wilkin et al., 2007). • Members of the organ donation community consulted with televi- sion writers on story lines that would correct misinformation about organ donation. Six story lines on four television dramas (Num- b3rs, Grey’s Anatomy, CSI: NY, and House) resulted in a positive change in knowledge and attitudes among viewers. The intention

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393 PUBLIC EDUCATION AND AWARENESS to become an organ donor increased significantly among viewers exposed to the story line on Numb3rs, which featured a dinner discussion that resulted in several characters’ encouraging the one non-donor to designate himself as an organ donor on his driver’s license (Huang et al., 2006). • A syphilis story line on ER involved homosexual men and was broadcast during a period of time when syphilis outbreaks had occurred in this population in several U.S. metropolitan areas. A survey revealed that viewers of the story line reported significantly greater intentions than non-viewers to be tested for syphilis and to advise someone else to be tested (Whittier et al., 2005). • An increase in information seeking was demonstrated by Kennedy and colleagues (2004) when a daytime drama (The Bold and the Beautiful) featured a story line about a character diagnosed with HIV. A public service announcement featuring the character aired at the end of two episodes and included the toll-free phone num- ber for the National Sexually Transmitted Diseases and Acquired Immune Deficiency Syndrome (AIDS) Hotline. Two large spikes in calls occurred, the first after the episode in which the main char- acter learned he was HIV positive, and the second after he told his girlfriend. This viewer response created more calls to the hotline that year than any television broadcast that included AIDS-relevant information (five out of six included the hotline number), as illus- trated in Figure 8-1. Although the examples of story lines described above are not specific to epilepsy, a variety of lessons can be learned and may be useful in promoting the development and use of epilepsy-related story lines: • Principles from social-cognitive theory, or social modeling, suggest that audiences learn from individuals with whom they identify and that they are likely to emulate behavior that has positive outcomes and avoid behavior with negative outcomes (Bandura, 1986). The entertainment-education approach, which involves educating writ- ers about health and social issues to inform storylines, was used in television in the 1970s with early work in Mexico to convey literacy messages through Spanish-language telenovelas (Bandura, 1986; Singhal et al., 2004). • Careful evaluation and viewer surveys are required to measure the success of story lines and to identify best practices for future efforts. • Clear, concise, accurate, and compelling information is necessary to inform writers and producers. For example, the following was used

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414 EPILEPSY ACROSS THE SPECTRUM leagues (2008) noted that “few interventions have specifically addressed the stigma associated with epilepsy” among the general public. When the Carter Center hosted an international meeting on mental health stigma in 2009, participants identified three components of success- ful anti-stigma campaigns for the public: (1) a focus on positive rather than negative messages (what you can do rather than what you should not do), (2) a plan for long-term sustainability, and (3) an evaluation that is planned and conducted from the beginning of the campaign, allowing evaluators to track data over time (Carter Center, 2009). The literature supports similar components, noting that the success of public health campaigns relies on several factors, including targeted, well- executed campaigns that are strategically designed to achieve behavior change (Noar, 2006) and the availability of resources, community pro- grams, and policies to reinforce behavior change (Wakefield et al., 2010). If the desired changes are going to be sustained over time, campaigns must be ongoing. Shorter campaigns may temporarily increase knowledge (Evans- Lacko et al., 2010) but are less likely to achieve the more difficult changes in attitudes, beliefs, and behavior. In short, efforts to reduce the stigma associated with epilepsy will require a commitment to long-term campaigns that stimulate broad-based community support and participation, supportive policies, and the re- sources for sustainability, in order to ensure that interventions and evalu- ations can be maintained at a level where they can both make a difference and document it. CONCLUSION In the summary report of the 2003 Living Well With Epilepsy II Con- ference, the work group on quality of life called for research to “assess the impact of public education campaigns and specific messages on social stigma and apply the results to future campaigns” (AES et al., 2004, p. 25). In a 2009 report, the Epilepsy Foundation proposed that a desirable goal for a social marketing campaign to reduce epilepsy stigma would be for the majority of people in a community to agree that epilepsy does not have a stigma (Epilepsy Foundation, 2009), with the implication that community members’ attitudes and behavior would support this belief. Numerous other studies and reports that discuss the well-being of people with epilepsy rec- ommend public education in order to remedy society’s lack of knowledge, misinformation, and stigmatizing attitudes and behavior. The committee agrees with these previous recommendations and pro- poses some goals for consideration in future public awareness and educa- tion campaigns, recognizing that formative research and data will dictate specific goals for the general public and for target audiences:

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415 PUBLIC EDUCATION AND AWARENESS • Promote core public knowledge about epilepsy: Epilepsy is a common brain disorder that affects men, women, and children of all ages, races/ethnicities, and socioeconomic backgrounds. Epilepsy is a spectrum disorder that varies in severity, causes, treatments, and outcomes and is not contagious. Epilepsy can be a serious, life-threatening disorder with great impact on health and quality of life, including increased risk of injury and death. Nearly two out of three people with epilepsy control their sei- zures with medication. Epilepsy specialists and centers have the expertise to treat and manage complex cases with both time-tested and new therapies and procedures, including surgery. Anyone can learn basic first aid to help someone when a seizure occurs. Most people with epilepsy are fully functioning members of so- ciety, with responsibility for jobs, families, and all aspects of life. The stigma associated with epilepsy can cause serious harm to the physical, mental, and social well-being of a person with epilepsy. • Increase positive attitudes and behavior, so that people feel comfortable around someone who has epilepsy; parents believe it is all right for their child to be around someone with epilepsy; teachers, employers, and colleagues understand that a person with epilepsy can be just as reliable and smart as someone with- out epilepsy; society supports the right of a person with epilepsy to marry and have children; no one would be embarrassed to have a family member with epilepsy; and everyone knows how to help someone having a seizure. Throughout this chapter, the committee has provided the basis for its research priorities and recommendations regarding improvements needed in educating the public about epilepsy, which are detailed in Chapter 9. In order to improve public awareness and knowledge, additional efforts need to be devoted to informing journalists as well as writers and produc- ers in the entertainment industry, engaging people with epilepsy and their

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416 EPILEPSY ACROSS THE SPECTRUM families in public awareness efforts, coordinating public awareness efforts and developing shared messaging, and ensuring that all campaigns include rigorous formative research, considerations for health literacy and audience demographics, and mechanisms for evaluation. With the broad base of support and collaboration demonstrated by members of Vision 20-20, the epilepsy community is positioned to embrace a coordinated communication planning effort to improve public awareness and education and reduce stigma. Recognizing the challenges and barriers associated with the current economic climate, the planning and implemen- tation of a large-scale, nationwide public awareness campaign will, more than ever, require creative partnerships and collaborations. Developing new partnerships—both within and outside the epilepsy field, identifying common goals, and exploring key strategies and messaging will take time, but first steps could begin now. The planning process should be informed by new data from national surveys, an understanding of the diverse media through which the public receives health information, and lessons from past health campaigns. REFERENCES AES (American Epilepsy Society), CDC (Centers for Disease Control and Prevention), Chronic Disease Directors, Epilepsy Foundation, and NAEC (National Association of Epilepsy Centers). 2004. Living well with epilepsy II: Report of the 2003 National Conference on Public Health and Epilepsy: Priorities for a public health agenda on epilepsy. http://www. cdc.gov/epilepsy/pdfs/living_well_2003.pdf (accessed February 2, 2012). Altman, L. K. 1987. Surgeons remove cancerous breast of Nancy Reagan. New York Times, http://www.nytimes.com/1987/10/18/us/surgeons-remove-cancerous-breast-of-nancy- reagan.html?pagewanted=all&src=pm (access-ed February 27, 2012). American Legacy Foundation. 2012. Youth activism. http://www.legacyforhealth.org/65.aspx (accessed February 17, 2012). Antonak, R. F., and H. Livneh. 1995. Development, psychometric analysis, and validation of an error-choice test to measure attitudes toward persons with epilepsy. Rehabilitation Psychology 40(1):25-38. Austin, J. K., P. O. Shafer, and J. B. Deering. 2002. Epilepsy familiarity, knowledge, and perceptions of stigma: Report from a survey of adolescents in the general population. Epilepsy and Behavior 3(4):368-375. Austin, J. K., D. A. Carr, and B. P. Hermann. 2006. Living well II: A review of progress since 2003. Epilepsy and Behavior 9(3):386-393. Autism Speaks. 2012. Autism Speaks state autism insurance reform initiatives. http://www. autismvotes.org/site/c.frKNI3PCImE/b.3909861/k.B9DF/State_Initiatives.htm (accessed February 17, 2012). Bandstra, N. F., C. S. Camfield, and P. R. Camfield. 2008. Stigma of epilepsy. Canadian Jour- nal of Neurological Sciences 35(4):436-440. Bandura, A. 1986. Social foundations of thought and action: A social cognitive theory. Engle- wood Cliffs, NJ: Prentice-Hall. Baumann, R. J., J. F. Wilson, and H. J. Wiese. 1995. Kentuckians’ attitudes toward children with epilepsy. Epilepsia 36(10):1003-1008.

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