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Institute of Medicine (US) Committee on the Public Health Dimensions of the Epilepsies; England MJ, Liverman CT, Schultz AM, et al., editors. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington (DC): National Academies Press (US); 2012.

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Epilepsy Across the Spectrum: Promoting Health and Understanding.

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8Public 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.

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 encountered 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

Why 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 patients 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 misinformation 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). However, 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 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 knowledge 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 consequences, including lower self-esteem, social anxiety, discrimination, isolation, 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 neurologists (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 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 authors 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 opportunities 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 condition (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 generally 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 concluded 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, 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, questions have been raised about the ability of surveys to accurately measure attitudes due to participants' tendencies to provide socially desirable responses, 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 Disease 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 stereotypes 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 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 instrument to capture current attitudes toward epilepsy and assess the current level of epilepsy stigma (Personal communication, R. Kobau, CDC, March 16, 2011).

Box Icon

Box 8-1

EXAMPLES OF SURVEY ITEMS FROM THE ATTITUDES AND BELIEFS ABOUT LIVING WITH EPILEPSY INSTRUMENT. I would be nervous around a person with epilepsy because they might have a seizure. I believe people with epilepsy are unreliable.

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 respondent'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 epilepsy are viewed as experts on their condition and discuss their own lack of knowledge, the lack of knowledge about epilepsy and stigma among 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 interventions 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 communication 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 consulted 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 Foundation, 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, typically portray severe tonic-clonic seizures (Kobau and Price, 2003). These vivid depictions may frighten the viewing public and foster the development 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 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 influence 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 estimated 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 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 encourage 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 information. 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 information 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 “seizure” and how seizures are characterized and to determine the potential for information dissemination. The review analyzed more than 5,000 messages 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.

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., discussion 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 beyond 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 immunodeficiency virus (HIV)—with the goal of producing positive impacts on audiences. Increases in awareness, knowledge, discussions with other people, information seeking, and healthy behaviors and practices have been measured 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 telenovela (soap opera) resulted in increased knowledge among viewers, 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 television writers on story lines that would correct misinformation about organ donation. Six story lines on four television dramas (Numb3rs, Grey's Anatomy, CSI: NY, and House) resulted in a positive change in knowledge and attitudes among viewers. The intention 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 number 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 character 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 illustrated in Figure 8-1.
a line graph that illustrates the number of calls to the Centers for Disease Control and Prevention National Sexually Transmitted Disease and AIDS Hotline from January to December 2001

FIGURE 8-1

Calls to the Centers for Disease Control and Prevention's National Sexually Transmitted Diseases and AIDS Hotline, January–December 2001. The Bold and the Beautiful story lines aired on August 3 and August 13. NOTE: AIDS = acquired immune deficiency (more...)

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 writers 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 in conjunction with pitching an organ donation story line to writers: “Over 93,721 people are waiting for the gift of life” (Huang et al., 2006).
  • A variety of resources, such as websites, social media, and 800 numbers, offered in connection with the story lines provide viewers with multiple access points to valuable information, as well as a way to track audience response.
  • Public-private partnerships facilitate and expand advocacy and outreach efforts and can play an important role in activities, such as expert consultations on story lines and development of informational resources.

Currently, nearly 200 million viewers tune in to a variety of prime-time (8 to 11 p.m. in most U.S. time zones) television programs each week, including 56 percent who watch reality shows and nearly 24 percent who watch dramas (Nielsen Wire, 2011a). While reality television programs have grown in popularity over the past decade, especially among young adults and teens who may view them as factual, little systematic study has been conducted of audience effects and the health messages they might (sometimes incidentally) convey (Christenson and Ivancin, 2006). Primarily, researchers have conducted content analysis of reality television shows and found a lack of prevention messages (Manganello and McKenzie, 2009) or mixed messages at best (Blair et al., 2005; Christenson and Ivancin, 2006). Although some reality programs have included positive health-related messages (e.g., The Biggest Loser includes tips on diet and exercise), many portray risky behavior (e.g., alcohol and drug use). Despite the popularity of these programs, more information and data will be needed to determine whether there are any opportunities to leverage this form of entertainment to deliver accurate health information to viewers. Further, not all forms of entertainment are well suited to serve as vehicles to educate the public.

Depictions of Epilepsy in Television and Film

Several studies have been conducted to analyze epilepsy depictions in television and film, and they conclude that inaccurate first-aid treatment and exaggerated occurrences of more severe types of seizures are common. A study of four popular television medical dramas (House; Grey's Anatomy; Private Practice; and ER) during the 2004-2009 seasons identified 65 depictions of seizures (Moeller et al., 2011). The vast majority of these (53) were tonic-clonic seizures, but, most notably, nearly half of the depictions showed medical staff treating the seizure inappropriately. Because medical dramas are far more likely than other television dramas to retain medical consultants and writers, these depictions are arguably the closest-to-accurate seizure depictions on television. This suggests a critical need for education and awareness about seizure first aid among television writers who have the power to educate the general public through their storytelling.

Popular motion pictures also may influence the public's attitudes and beliefs about epilepsy. A 2010 survey of U.S. adults found that two-thirds of respondents had gone to a movie in the previous 6 months and one-fourth within the past 90 days (Experian Marketing Services, 2010). These figures do not include the millions of viewers who watch movies on DVD and television. Kerson and colleagues (1999) analyzed 20 films with epilepsy depictions, noting that seizures were often used by the filmmakers as part of character development. The researchers found fairly accurate depictions of seizures, but severe and uncontrolled seizures were far more common than less severe ones and offered mostly sensationalized and frightening images for viewers. Similarly, Baxendale (2003) reported that seizure depictions in film continue to be frightening, showing men with seizures to be “mad, bad, and dangerous,” while women with seizures were depicted as “exotic and vulnerable.” These portrayals may negatively influence the public's attitudes, beliefs, and responses to seizures, as well.

Based on experience in the mental health community, Wahl (2011) proposed strategies to improve the accuracy of epilepsy depictions, including education of entertainment media writers, in part by having people with epilepsy share their personal stories. The Los Angeles affiliate of the Epilepsy Foundation recognizes the need for outreach to the entertainment industry:

[W]e cannot fulfill our mission until we proactively impact and influence the entertainment industry to ensure that correct epilepsy information, accurate seizure first aid, and sensitive portrayals of epilepsy are portrayed on the big and small screen. This is both a local and national imperative if we are to increase awareness about epilepsy, secure the safety of individuals with epilepsy, and ensure their acceptance and access to all life experiences. (Pietsch-Escueta, 2009)

To ensure that the public receives accurate information, the epilepsy community will need to target the writers and producers of popular media content, including web, mobile, film, and television formats. Informational guidelines for accurate depictions and periodic meetings with writers are needed. Further, partnerships need to be developed between media content producers and the epilepsy community, with perhaps the most effective strategy being to connect content producers with people who have the disorder themselves or those who have a child or close family member affected.

Models for Improving Coverage and Depictions of the Epilepsies in the Media

A number of models and strategies for improving the accuracy and coverage of health topics in the news and entertainment media have been developed by government agencies, academic universities, nonprofit organizations, and foundations. These initiatives, which include a variety of educational opportunities and awards, typically target journalists and entertainment media writers and producers, in order to inform and engage the writers whose stories and interviews will inform and educate the public.

Programs for Journalists

In 1994, recommendations from a national workshop on suicide contagion and reporting on suicides were published in CDC's Morbidity and Mortality Weekly Report, in response to concerns that news media coverage of youth suicide had the potential to fuel suicide clusters (O'Carroll and Potter, 1994). The recommendations included general topics that public officials and health and media professionals should consider when reporting about a suicide and focused on factual and concise media coverage with specifics on ways to avoid sensationalizing the event or promoting suicide contagion among youthful audiences. Furthermore, the recommendations described how communities could confront the problem of youth suicide and potential contagion more effectively when a news story appeared (O'Carroll and Potter, 1994). This workshop provided public health guidance for journalists and emphasized the potential negative impact of media coverage on vulnerable populations.

Programs that have demonstrated success in training journalists about public health topics and in generating more accurate and in-depth coverage have evolved over the past few decades. One example is a program hosted through the Carter Center, the Rosalynn Carter Fellowships for Mental Health Journalism.4 This fellowship program offers stipends for journalists from the United States and other countries to support their efforts (including training and mentorship) to report on topics related to mental health.

Other programs designed to educate journalists about health-related topics include the following:

  • The California Endowment's Health Journalism Fellowships at the University of Southern California offer journalists an opportunity to learn from nationally renowned health experts, policy analysts, community health leaders, top journalists, and each other. Participants are encouraged to explore health challenges and social justice issues as they develop stories for their media outlets.5
  • The Association of Health Care Journalists offers a number of Health Journalism Fellowships that are supported through partnerships with the CDC and other organizations. These fellowships provide opportunities for reporters, writers, editors, and producers to study a variety of public health topics.6
  • The National Press Foundation, based in Washington, DC, conducts a variety of educational and awards programs around health and other topics, with an emphasis on public policy and how it affects U.S. readers and viewers.7
  • The Kaiser Media Fellowships in Health provide in-depth briefings and week-long site visits for invited health and health policy journalists, helping them to understand complex health policy dilemmas. The Kaiser Media Internships in Health Reporting program is designed for young U.S. journalists who want to specialize in health reporting.8

Programs for Writers in the Entertainment Media

For many years, key health organizations have worked closely with writers and producers of television shows to cultivate a “Hollywood presence.” By building relationships and making their health experts available to scriptwriters, they have identified and promoted constructive public health messages, with many of these messages subsequently used by writers in daytime and prime-time dramas on subjects such as HIV/AIDS and other health topics (KFF, 2008; Rideout, 2008). For example, it should be noted that pro-health messages are always subject to what the writers and producers need for their story lines. If they need a more compelling drama, they are likely to use a more dramatic portrayal of a topic. In the absence of expert input and consultation, it is even more likely that writers will take liberties with the health content to amplify the drama, which may help to explain why seizures of the most dramatic type are what television dramas typically portray.

Hollywood, Health and Society9 is an initiative conducting outreach to entertainment writers on public health topics in the United States (Beck, 2003). The project is funded by the CDC, other federal health agencies, and private foundations, and it is based at the Norman Lear Center at the University of Southern California's Annenberg School for Communication and Journalism. National health experts consult on specific story lines, provide briefings on a variety of public health topics, and participate in educational panels. Hollywood, Health and Society staff also help connect scriptwriters with people who have specific health conditions, so writers can “put a human face” on the experiences they are writing about, understand the emotional burden and challenges people confront, and ultimately develop a more realistic and compelling story line with characters to whom the audience will relate.

To reinforce exemplary depictions, several awards programs recognize accurate portrayals of health topics in entertainment programming and showcase winning story lines. The Sentinel for Health Awards, sponsored by Hollywood, Health and Society, and the Voice Awards, funded by the Substance Abuse and Mental Health Services Administration, are two examples. The Voice Awards program specifically recognizes entertainment programming that promotes dignified, respectful, and accurate portrayals that raise “awareness and understanding of behavioral health (mental health and/or addiction issues) and [promote] the social inclusion of individuals with behavioral health problems” (SAMHSA, 2011).

While none of the models described in this section have focused specifically on epilepsy, they suggest potential partners for collaboration to help media writers and producers understand the epilepsies and influence information and portrayals read and viewed by the public. Members of the epilepsy community need to build on these existing efforts in order to further improve public education about epilepsy.

PUBLIC AWARENESS CAMPAIGNS

The Evolution of Epilepsy Campaigns

The Epilepsy Foundation is a national, nonprofit organization whose mission, in part, focuses on educating the public “to improve how people with epilepsy are perceived, accepted and valued in society” (Epilepsy Foundation, 2011). Throughout a longstanding partnership with the CDC, the Epilepsy Foundation has committed substantial resources to improving public awareness, public understanding, and public acceptance of people with epilepsy—“the three cardinal virtues” on which the foundation's public education programs are based (Scherer, 2004). Noteworthy results have been achieved during and immediately following multiple Epilepsy Foundation campaigns, including the efforts described below. Results include increased phone calls for information on epilepsy, visits to the foundation's website, and attendance at educational events. However, the cost-effectiveness and long-term impact of these campaigns have not been evaluated to date.

Since the 1970s, Epilepsy Foundation campaigns have focused on improving seizure recognition and awareness and eliminating stigma, although their specific messages have evolved over time (Finucane, 2011). They have employed a variety of media channels at the national level, assisted by state and local Epilepsy Foundation affiliates' efforts to disseminate campaign messages locally.

In the 1970s, the Epilepsy Foundation engaged celebrities in education efforts, and epilepsy advocacy groups and campaigns consolidated.10 During this period, important policy changes (e.g., disability policies; Chapter 6) were being enacted and the first federally funded epilepsy treatment centers were established. In the next decade or so, from the 1980s to early 1990s, November was declared Epilepsy Awareness Month, and a common campaign theme for epilepsy recognition and awareness was “get the facts,” with an emphasis on messages that dispelled misperceptions (e.g., “it's not what you think”) and described the sometimes hidden signs of seizures (“is it daydreaming, spacing out, or a seizure?”) (Finucane, 2011). For the rest of the 1990s, normalizing messages that conveyed epilepsy as a chronic health condition were dropped in favor of messages that focused on epilepsy as a serious condition that required emergency response to a seizure and appropriate seizure first aid. Campaign messages were both general and tailored to specific audience segments, including women (to change behavior and treatment), older adults (“is it old age or epilepsy?”), and those who interact with people with epilepsy (Finucane, 2011). In the 2000s, campaign activities and educational programs have targeted teens and minority groups (Scherer, 2004) as well as specific professionals, such as school nurses and emergency medical services and law enforcement personnel (Chapter 5).

Epilepsy Campaigns to Reduce Stigma

Examples from epilepsy campaigns offer evidence that strategic education and awareness efforts can reduce stigma with a positive short-term impact on knowledge and attitudes, but there is little evidence to support positive changes in attitudes and beliefs over a longer time frame.

The Entitled to Respect Campaign

In 2001 and 2002, the Epilepsy Foundation partnered with the CDC to promote knowledge about the epilepsies and to increase social acceptance of adolescents with epilepsy (Austin et al., 2006; Epilepsy Foundation, 2001b; Scherer, 2004). The message of the Entitled to Respect Campaign was “that young people with epilepsy, like everyone else, are entitled to respect” (Scherer, 2004, p. 275), and the primary campaign medium was radio. Before the campaign launched in November 2001, a national survey on attitudes and beliefs about epilepsy was distributed to high school students in the areas of 20 local Epilepsy Foundation affiliates, with more than 19,000 surveys returned. These baseline data indicated that about half of youth were not sure whether seizures were contagious, and two-thirds would not know what to do in the presence of someone having a seizure (Austin et al., 2006; Epilepsy Foundation, 2001a,b). The subsequent campaign ran for a full year. In a review of stigma studies, Bandstra and colleagues (2008) questioned why the unfavorable perceptions from the 2001 survey were not explored to determine their origins. No post-test evaluation of the 2001-2002 campaign was conducted; therefore, although the need for the campaign was demonstrated by the national survey, its results are unknown.

In 2003, the campaign was adapted to target African American youth, through a partnership with 66 radio stations with strong reach into African American communities in 22 of the nation's largest urban markets (Epilepsy Foundation, 2001b, 2002; Scherer, 2004). Popular singers and actors served as spokespersons for the campaign's public service announcements, which received 9,900 plays and created 120 million media impressions (80 percent of which were among African American listeners). In addition, 12,000 brochures were distributed by participating stations, and 33 stations provided links to the Entitled to Respect Campaign website. Additional public service announcements were distributed to 1,800 youth-oriented radio stations, for a total of 5,800 broadcasts (Scherer, 2004).

Seizures and You: Take Charge of the Facts

In response to recommendations from the Living Well with Epilepsy II Conference, the Epilepsy Foundation, with CDC support, developed a focused classroom campaign and curriculum called Seizures and You: Take Charge of the Facts that was designed to raise awareness about epilepsy and improve knowledge of seizure first aid (Austin et al., 2006). During the 2006-2007 school year, a training module on basic seizure recognition and first aid, titled “Take Charge,” was distributed by state and local Epilepsy Foundation affiliates to science and health teachers nationwide (Epilepsy Foundation, 2009). In June and July, Harris Interactive conducted the 2007 Study on Teen Attitudes and Awareness of Epilepsy Survey of more than 2,000 teens whose demographics were similar to those in the 2001 attitude and awareness study. Results indicated a substantial drop in students who indicated they were “not at all/not too familiar with epilepsy,” from 70 percent in 2001 to less than 25 percent in 2007 (Epilepsy Foundation, 2009; Harris Interactive, 2007). Respondents who knew someone with epilepsy were more than twice as likely to say they were “extremely” or “very” comfortable around someone with epilepsy, compared to those who did not (47 versus 20 percent). This suggests that people with epilepsy who are willing to discuss their disorder openly can have a positive and powerful influence on friends and family members. Surprisingly, given the availability of the Take Charge curriculum, only 11 percent of students reported that they received epilepsy information in the classroom, pointing to a potential weakness of the campaign and an area for further development.

Project Access Communication Action Plan

Project Access (also discussed in Chapter 4) is a national initiative, funded by the Health Resources and Services Administration, that launched in September 2004 “to improve awareness and access to comprehensive, coordinated health care and related services for children and youth with epilepsy in medically underserved areas” (Epilepsy Foundation, 2010, p. 5). The public awareness component for the project's eight state demonstration grants funded from 2004 to 2007 had as a main goal to create community action “to improve awareness and understanding of epilepsy, reduce stigma, improve access, and achieve early detection, diagnosis and referral” (Epilepsy Foundation, 2010, p. 6). Target audiences included children and youth with epilepsy and their family members, as well as the general public.

With technical assistance from the Epilepsy Foundation, Ogilvy Public Relations Worldwide, and local community partners, each of the states planned and implemented social marketing outreach, including engagement with diverse communities, media utilization, and evaluation. Some of the tools and products developed by individual states included public service announcements and advertisements that ran on radio and television, in newspapers, and on public transit. Additional print materials were produced for health care providers, families with children who had epilepsy, and other target groups. One grantee estimated that the epilepsy awareness message on public transit reached 36 million riders during the 3 months it ran and 2,916 people attended 69 educational programs (Epilepsy Foundation, 2010).

Lessons Learned

All of these campaign efforts included anti-stigma messages; however, there was little or no measurement of attitudes and beliefs that characterize stigma to determine how they might have changed as a result of the campaigns. Most of the data documented process accomplishments, including audience reach and response in terms of dissemination of messages and materials, attendance at events, callers to 800 numbers, and website visits. The National Teen Survey conducted in association with the Entitled to Respect Campaign was a partial exception in that it provided credible pre-campaign data, but again, data on any changes in teens' awareness and attitudes were not collected. Prospective data collection over time, using reliable measures for epilepsy stigma, is necessary to help campaign planners assess and compare the impact of different campaign interventions. With data collection throughout the duration of the campaign, especially collection of pre- and post-campaign data on attitudes and behavior, planners will be in a stronger position to know how to allocate future resources most effectively.

Project Access identified important lessons learned from the eight demonstration projects. The lessons emphasize the importance of partnerships and collaboration to the overall success of the project, as well as buy-in from leadership to support the project when challenges arise and alternative approaches are needed (Epilepsy Foundation, 2010). Benefits of partnership and collaboration included

  • diversity of input in planning and implementation to better meet community needs,
  • improved performance accountability,
  • improved learning from a variety of past experiences,
  • building support for long-term success and sustainability,
  • improved service provider performance, and
  • project buy-in from community leaders.

Examples of Non-Epilepsy Health Campaigns to Reduce Stigma

The experiences of health campaigns that have focused on stigma associated with other conditions and those that have targeted specific audiences offer lessons to inform epilepsy campaigns. The following section provides a brief overview of lessons learned from campaigns that focused on HIV/AIDS, mental health, and youth.

HIV/AIDS Campaigns

Interventions to reduce stigma around HIV/AIDS have successfully used a variety of strategies, including information dissemination and personal contact with individuals with HIV/AIDS, with the combination of several interventions yielding the strongest effects (Brown et al., 2003). However, efforts to reduce HIV/AIDS stigma have had mixed results (Herek et al., 2002), because the disease is entangled with public attitudes concerning intravenous drug users, homosexuality, and sexual behavior (IOM, 2001). Little research is available to guide the individual who is newly diagnosed with HIV on the best approaches to confront stigma, including whether to talk to other people about the diagnosis or to conceal it (Rintamaki and Weaver, 2008).

In the United States, most efforts to reduce HIV/AIDS stigma have been targeted primarily to individuals, rather than population-level audiences.11 In other countries, especially African countries where the majority of the population knows someone with HIV or AIDS, stigma interventions are aimed at the community level (Brown et al., 2001). However, evaluations to measure impact have not been well documented. In most cases, an evaluation was not conducted or was not rigorous enough to demonstrate any effects of intervention. Limitations cited by researchers include the lack of studies with formative research that focus on stigma (Sengupta et al., 2011) and the lack of evaluations that include follow-up over time.

Mental Health Campaigns

In the United States, the mental health community has attempted to ameliorate stigma through both national campaigns and grassroots strategies. In 1999, a Surgeon General's report on mental health declared stigma a public health concern (HHS, 1999), and the President's New Freedom Commission on Mental Health (2003) called for a national campaign to reduce stigma and encourage people to seek care for mental health concerns.

Results from the 2006 General Social Survey indicate that the public's acceptance of mental health conditions as a neurobiological disorder had increased since the 1996 General Social Survey, when data on this topic were first collected, along with an increased belief in the benefits of treatment and hospitalization (Pescosolido et al., 2010). However, the public's acceptance of people with mental health conditions and the attitudes associated with stigma have not improved, motivating the authors to call for strategies that emphasize the competence of people with mental health conditions and the need for their inclusion in all areas of society.

In 2007, similar findings from 35 states12 indicated that more than 85 percent of respondents agreed that treatment could help people with mental health conditions, but far fewer (slightly more than 57 percent) believed that people are generally caring and sympathetic toward those with mental health conditions (Manderscheid et al., 2010). Only one-fourth of people who had a mental health condition responded positively to the second statement. The authors called for public education to help people understand how they can support individuals with these conditions and for local programs and media to decrease negative stereotypes that prevent people from seeking treatment.

The Substance Abuse and Mental Health Services Administration has a three-pronged approach to stigma reduction in mental health: (1) public education campaigns to counter misperceptions, (2) reward and protest strategies to respond to stigmatizing media coverage and business practices, and (3) the contact approach—to encourage interpersonal interactions between people with mental health conditions and the general public (Corrigan et al., 2001; Marshall, 2011). The campaign, titled What a Difference a Friend Makes, is based on a peer support recovery model, with public service announcements, a dedicated website, and social media components to reinforce campaign messages among 18- to 25-year-olds. Most noteworthy is the extensive evaluation undertaken to measure campaign impact. An Ad Council survey tracked the number of young adults who supported friends with mental health conditions, as well as any decreases in stigma around mental health. Additional evaluations were conducted using the HealthStyles Survey and a survey from the CDC's Behavioral Risk Factor Surveillance System, as well as a study conducted by the National Institute of Mental Health. Evaluation results indicate that respondents exposed to campaign messages were more likely to say they would support a friend with a mental health condition and more likely to discuss these conditions with friends and family (Marshall, 2011). Suggestions for successful campaign design deriving from this experience include that it should

  • be of at least 3 years' duration,
  • have clearly defined targets and results,
  • involve extensive pre-testing of materials,
  • include frequent distribution of new materials to drive media coverage, and
  • employ multifaceted approaches, including a variety of web and mobile materials and strategies.

The National Alliance on Mental Illness (NAMI) is a nonprofit organization that advocates for improved services and develops support and educational programs to educate the general public, people with mental health conditions, and family members about mental health conditions.13 To take on the problem of stigma, NAMI has adopted five strategies: praise, protest, personal contact, partnerships, and advocacy (Carolla, 2011). The protest strategy is operationalized through NAMI's Stigma Busters Program, which identifies negative portrayals of mental health conditions in the media and brings the portrayal to the media outlet's attention for remedial action and public education. In Our Own Voice and NAMI Walks are two programs that respond to stigma through personal presentations by, and community involvement of, people with mental health conditions (NAMI, 2011, 2012). Development of important partnerships and increased community awareness are considered significant outcomes that result from these types of programs.

Youth-Focused Campaigns

Two health campaigns that target youth are particularly informative for epilepsy, because youth are a priority target for epilepsy education and awareness. The American Legacy Foundation's well-funded Truth Campaign and the CDC's VERB campaign both have a long-term goal of preventing disease through reduced tobacco use and increased physical activity, respectively.

Since 2000, the American Legacy Foundation's Truth Campaign has focused on the prevention and cessation of youth tobacco use to prevent short- and long-term health consequences. To reach youth who are at greatest risk, the campaign has to overcome substantial challenges, such as the longstanding use of tobacco as a form of teenage rebellion and young people's disinterest in health risks that lay far in the future. Early evaluations of the Truth Campaign demonstrated impressive declines in youth smoking rates, with 22 percent of the decline between 1999 and 2002 attributed to the campaign (Farrelly et al., 2005). In more recent years, the campaign's awareness ratings have extended beyond the target age group of 12- to 17-year-olds to reach 18- to 24-year-olds. A majority of this older group is aware of the campaign, and about half of the reported antismoking attitudes and beliefs in this group are associated with the campaign (Richardson et al., 2010). However, these beliefs were only marginally associated with older teens' intention not to smoke or to quit smoking. A cornerstone of the foundation's work in tobacco prevention and control that has proven to be successful is youth activism, which engages youth in a range of activities including a fellowship program, leadership institute, online community, technical assistance, training, briefings on Capitol Hill, and an alumni network (American Legacy Foundation, 2012).

About the same time the Truth Campaign started, the CDC launched the VERB campaign to promote youth physical activity and reduce obesity and its associated chronic health conditions. The VERB campaign illustrates the power of paid advertising and social marketing approaches to create awareness of campaign messages and to positively influence youth behavior within a short period of time. The VERB campaign operated from 2002 to 2006 and was congressionally funded (Berkowitz et al., 2008; Cavill and Maibach, 2008; CDC, 2007; Wong et al., 2008). The campaign organizers invested in and planned evaluation mechanisms from the start. After a year of paid advertising, Huhman and colleagues (2005) reported that 74 percent of surveyed children were aware of the VERB campaign, and this awareness was associated with higher levels of physical activity (up to 34 percent) in several groups of children, compared to children unaware of the campaign. Higher levels of physical activity were found for 9- to 10-year-olds, girls, youth whose parents had less than high school education, youth in urban areas, and youth with low levels of physical activity at baseline (Huhman et al., 2005). Campaign organizers were encouraged by these results because awareness is the first step in changing attitudes and behavior. The authors also noted the importance of the message that physical activity is a fun social activity with friends, which may have had the strongest influence on the younger audience of 9- to 10-year-olds and girls, who generally have lower levels of physical activity. Importantly, advertisements were realistic, portraying activities that were appropriate for the environments in which the target groups of children lived.

Lessons Learned

The campaigns discussed in this section offer several lessons for the epilepsy community:

  • Engaging target audiences in the development of campaigns can increase efficacy.
  • Multiple interventions increase the success of stigma reduction efforts.
  • A variety of strategies and ongoing activities is required to reach campaign goals.
  • Peer support can be a powerful and effective strategy to reduce stigma.
  • Youth who are engaged as activists can have a significant influence on peer behavior.
  • Paid advertising can be an effective way for a social marketing campaign to engage high-risk target audiences and community members from the beginning. However, this approach may be costly.
  • Both short- and long-term evaluations are necessary to understand successes and shortcomings and to plan for future campaigns.

Health Literacy and Cultural Considerations

An improved understanding of epilepsy is needed by the general public and specifically among groups with limited health literacy and those with unique cultural backgrounds and beliefs. Since nearly half of adults in the United States have limited health literacy in terms of their ability to understand and act upon health information (IOM, 2004), all public education campaigns need to follow the principles of clear communication to ensure that key messages are comprehensible to their audiences.

A 2004 report based on qualitative research conducted to inform a grassroots communications campaign in 15 U.S. cities (StrategyOne, 2004) offers some formative data on African Americans' knowledge and views about epilepsy. More than half of the respondents in focus groups and interviews reported that they had too little information about epilepsy, and about half said they would not know what to do if someone had a seizure. Among those who said they knew what to do, 59 percent said they would put something in the person's mouth, an action that is not appropriate. One in three agreed with statements that people with epilepsy could be dangerous (to themselves or others) and that they should be accompanied by someone most of the time.

Similar studies in Hispanic populations found a lack of information about epilepsy and perceptions that are sometimes influenced by religious beliefs and the fear of death (Lopez, 2004; Sirven et al., 2005). Factors that negatively impact quality of life, such as stigma and restricted living, are often perceived as “sacrifices” that must be endured to earn a place in heaven (Lopez, 2004). Language barriers, reliance on word-of-mouth for health information, and distrust of sources outside the community contribute to poor access to accurate information.14 In this type of environment, misperceptions are common (e.g., a seizure can be contagious, a person will die if they have a tonic-clonic seizure, a person who has a focal seizure with impairment of consciousness or responsiveness is on drugs or has a mental health condition). Four focus groups with adults were conducted in four U.S. cities by the Epilepsy Foundation (Media Network, Inc., 2003) to learn about the experiences of Hispanic people with epilepsy. A key concern was the lack of knowledge about epilepsy in Hispanic communities. Participants described members of their community as having many misperceptions about epilepsy and its treatment. These serious misperceptions contribute to reluctance to discuss epilepsy openly with others.

In the formative process of a communication and awareness campaign, target audiences must be identified and engaged, including groups with low health literacy, populations with diverse cultural beliefs and backgrounds, and groups whose age, injury status, or health condition puts them at increased risk for epilepsy. Message development and dissemination need to be tailored to take into account the unique needs, health literacy levels, cultural beliefs, and media preferences of these populations.

Advocacy and Policy Considerations

Everyone knows why people wear pink ribbons, why do we not have this for epilepsy?

–Melinda Heine

Public policy and advocacy for people with epilepsy embrace a wide range of national, state, and local situations and priorities. The Epilepsy Foundation's areas of advocacy emphasis include civil rights, disability and Social Security benefits, family and community support, and public awareness. Advocacy efforts and campaigns target policy makers and influential individuals in order to improve their knowledge and awareness about epilepsy and to enlist their support for people with epilepsy, their family members, and organizations that conduct research, offer treatment, and provide services.

The breast cancer movement offers an example of continuing and successful advocacy and policy achievements, with increased public knowledge and awareness, reduced stigma, and impressive gains in research funding. Braun (2003) described the movement as having four key steps:

  • The first step, priming the market, occurred when two First Ladies—Betty Ford and Nancy Reagan—spoke publicly about their breast cancer in 1974 and 1987 (Altman, 1987; Lane et al., 1989; Rosenthal, 2011).15 Countless other women began sharing their stories about breast cancer through popular media16 and continue to do so today, through websites, chat rooms, and social media (Bender et al., 2011; Sharf, 2001). Equally important, breast cancer statistics were translated into easily understood messages for the general public.
  • The second step, engaging consumers, materialized as guidelines were developed for breast self-exams, mammograms, and clinical breast exams. At the same time, more media coverage and the launch of the Susan G. Komen for the Cure organization17 in 1982 helped to educate and involve the public and reach audience segments through targeted media.
  • The third step, political action, occurred during the 1980s and 1990s, when breast cancer advocates joined forces with the research community, which developed federal standards for mammography and gained quadrupled research funding in the 1990s.
  • The fourth step, going mainstream, established a strong base of ongoing support. This was achieved through extensive, creative partnerships with members of the business, government, sports, and scientific communities.

Since policy makers are members of the viewing public, they can be influenced by popular television programs as well. For example, after experts from the National Cancer Institute briefed writers and producers from the TV show ER about the patient navigator program for underserved individuals with cancer, the scriptwriters developed a story line that appeared in a program episode in early 2005. As a result, viewers heard about the patient navigator service and its benefits and about misinformation that was preventing some individuals from seeking early care for cancer. An important unintended effect of the ER story line was that congressional staff members and members of Congress viewed clips of the episode and discussed it, just prior to passing H.R. 1812, the Patient Navigator Outreach and Chronic Disease Prevention Act of 2005 (Marcus et al., 2010).

Grassroots media advocacy has resulted in enforcement and changes in a variety of health policies at state and local levels, as well. The following examples demonstrate the power of individuals and communities to mobilize and engage media for policy purposes:

  • The Community Trials Project in Berkeley, California, used media advocacy to raise community awareness of alcohol abuse and driving under the influence (DUI) enforcement efforts. The project was shown to be more effective than a public information campaign and demonstrated that community members, including volunteers, could be trained to generate local news coverage about DUI enforcement in electronic and print media (Holder and Treno, 1997). With increased awareness of enforcement, drivers may have been more likely to avoid driving under the influence of alcohol.
  • In 2005, Autism Speaks,18 a national organization founded by the former chairman of NBC Universal and his wife after their grandson was diagnosed with an autism spectrum disorder, began advocating for health insurance to cover treatment and services for children with autism spectrum disorders (Ursitti, 2008). At the time, few states required this coverage, and most insurance companies did not offer it. Through outreach efforts to media, stories about treatment needs and challenges were presented on the Today Show, NPR, and CNN, and articles appeared in the New York Times, Los Angeles Times, Boston Globe, and Washington Post. In addition to media outreach, the organization created a website that included state-by-state updates, access to resources, news updates, and legislative information. During this same time, under the auspices of Autism Speaks, families shared their stories in state legislative and committee sessions and, in some cases, with state news media. By 2008, seven states had passed laws requiring insurance coverage for children with autism spectrum disorders. As of February 2012, 29 states have such laws, 14 others are pursuing reform (Autism Speaks, 2012).
  • Epilepsy California was a collaboration among three local Epilepsy Foundation affiliates that led advocacy efforts focused on the California legislature to pass Senate Bill 161 in 2011. The bill allows teachers and other nonmedical school personnel to be trained to give emergency Diastat medication to students with epilepsy who have a seizure at school (Epilepsy California, 2011). Communications strategies included e-mails to stakeholders requesting they contact legislators, letters to the governor from neurologists, op-eds in daily newspapers, working with reporters to obtain news stories, and radio interviews (Personal communication, Jill Cabanillas, Epilepsy Alliance, October 27, 2011).

In summary, these organizations and efforts offer examples that may help inform epilepsy public awareness and education efforts. Specifically, they illustrate the important roles that volunteers and families can play in garnering media attention and promoting change at the national,19 state, and local levels—to achieve greater public awareness and education to reduce stigma, increase funding, support the development of new guidelines, encourage policy reform and enforcement, and even accomplish insurance reform. In the current economic environment, mobilizing families, volunteers, and organizational partners is critical to effectively communicate the challenges of epilepsy and other educational messages. By sharing their stories, as people with epilepsy and their families did during the Institute of Medicine committee's workshops and the advocacy effort for Senate Bill 161 in California, they become vital members of the public education effort.

HIGH-PROFILE INDIVIDUALS MAKING A DIFFERENCE

In addition to families and individuals who share their personal stories, carefully selected public personalities and celebrities who openly discuss a health condition can increase understanding of the condition and foster greater acceptance throughout society. People often become involved in a celebrity's narrative and may be inspired to care about a disease or disorder that is beyond the concerns of their own life and family (Beck, 2005). Brown and Fraser (2004) noted that it takes more than information to capture the public's attention, the celebrity's ability to engender emotional impact can lead to behavior change. Many celebrity stories have brought global attention to health concerns, reduced stigma, and influenced improvements in public education, public health, prevention, research funding, and policy.

In addition to the attention to breast cancer stimulated by the public stance taken by Betty Ford and Happy Rockefeller in 1974 and Nancy Reagan 13 years later (Altman, 1987; Lane et al., 1989; Rosenthal, 2011), two other announcements that similarly and immediately launched public dialogue and increased prevention and screening were Magic Johnson's revelation of his HIV-positive status and Katie Couric's campaign to promote colorectal screening after her husband died from colon cancer (Brown and Basil, 1995; Casey et al., 2003; Cram et al., 2003). Magic Johnson's greatest impact was on youth, who already closely identified with him as a popular professional basketball player. The important mediating influence was emotional, which had not characterized prior HIV informational messages that were prevalent, but often ignored. Katie Couric's story and resultant educational campaign helped to open public dialogue about the importance of colonoscopy, a procedure people often dread and generally consider inappropriate for public discussion. Both examples conveyed awareness that “anyone can be affected,” and the resulting campaigns increased knowledge about these diseases and arguably reduced the stigma associated with testing.

Michael J. Fox, who began an open discussion of his Parkinson's disease in 1998 (Michael J. Fox Foundation for Parkinson's Research, 2012), raised awareness of this neurological disorder with the same candor as the other celebrities cited above, but with some differences over time that are worth noting. The public has witnessed him living, acting, and aging with a disease that began when he was relatively young (he was diagnosed with early-onset disease at age 30 and publicly acknowledged it at age 37 [Michael J. Fox Foundation for Parkinson's Research, 2012]). His situation contrasts sharply with the experience of most people who develop Parkinson's disease later in life; the average age of onset is 60 years old (NINDS, 2004). He pursues an active and inspiring public life and career, despite his disability and dyskinesia, which causes the tremors and tics associated with Parkinson's. In 2000, Fox established the Michael J. Fox Foundation for Parkinson's Research.20 The foundation's success started with the dedication and efforts of its founder, but the annual reports and website also emphasize the critical role of volunteers, families, partnerships, and collaborations in maintaining its operations and the success of its fundraising and research. Fox also has appeared before Congress to advocate for more government funding for Parkinson's research.

Public figures and celebrities offer unique opportunities for building awareness, education, and advocacy and for increasing acceptance of people with the disorder. Policy makers and other leaders are often receptive to celebrities and high-profile individuals when they testify, participate in public forums, and “put a face on” a medical condition.

IMPROVING CAMPAIGNS TO ELIMINATE STIGMA

Public education and awareness campaigns are most often designed to communicate key campaign messages through mass media channels, such as television, radio, print, and other media (e.g., the Internet, DVDs, mobile devices), as well as through media targeted to specific groups. Over decades of evaluation, the literature supports the notion that mass media campaigns can influence large numbers of people to modify or avoid behavior that leads to disease, addiction, or injuries. Jacoby and Austin (2007) argued that disability and associated stigma are a social construct, so they are amenable to change. Lo and colleagues (2010) noted that epilepsy stigma is the result of misperceptions that flourish in the absence of authoritative, accepted information, which well-launched and well-presented campaigns can provide.

The National Cancer Institute's “pink book” details how to develop health communication campaigns and discusses their potential for changing social norms—that is, the beliefs and attitudes that contribute to stigma:

Society as a whole influences individual behavior by affecting norms and values, attitudes and opinions, laws and policies, and by creating physical, economic, cultural, and information environments. Health communication programs aimed at the societal level can change individual attitudes or behavior and thus change social norms. (NCI, n.d.)

People with epilepsy believe that education and awareness campaigns would help to reduce stigma in the general public (Paschal et al., 2007). Experts suggest that stigma needs to be tackled head on for longer-lasting effects (Birbeck, 2006). In a review of stigma studies, Bandstra and colleagues (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 successful 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 programs, 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 resources for sustainability, in order to ensure that interventions and evaluations 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 Conference, 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 recommend 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 proposes some goals for consideration in future public awareness and education campaigns, recognizing that formative research and data will dictate specific goals for the general public and for target audiences:

  • 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 seizures 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 society, 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 without 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 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.

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 implementation 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.

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Footnotes

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.

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 includes questions on consumer topics such as media habits, product use, lifestyle habits, and health topics.

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).

4
5
6
7
8
9
10

Prior to this consolidation, which led to the establishment of the present day Epilepsy Foundation, there were four independent nonprofit organizations—the Epilepsy Foundation, the Epilepsy Association of America (also known as the United Epilepsy Association), the American Epilepsy Federation, and the National Epilepsy League; each had separate missions and operating functions (Epilepsy Foundation, 1974).

11

A notable exception is the CDC's “Greater Than” campaign: http://www​.greaterthan.org.

12

The survey results are from questions related to mental health that were part of the 2007 CDC's Behavioral Risk Factor Surveillance System survey.

13
14

As in noted in Chapters 4 and 6, parent navigators, medical interpreters, community health workers/promotores de salud, social workers, and others may play a valuable role in bridging language, cultural, and access gaps between health professionals, health services, and people with epilepsy and their families.

15

The impact of Betty Ford's mastectomy on public awareness was intensified when, 2 weeks later, the vice president-designate's wife, Happy Rockefeller, also underwent a mastectomy (Medicine: Breast cancer: Fear and facts, 1974).

16

A prominent example was television journalist Betty Rollin's memoir, First, You Cry, published in 1976, which received (partly because of her media connection) tremendous publicity and further opened the public discussion about the emotional side of breast cancer and mastectomy (Lerner, 2001).

17
18
19

One recent example of a national-level effort to promote change and improve awareness was the introduction of H.R. 298, in the U.S. House of Representatives on June 3, 2011, which was developed in order to recognize the “need for specified agencies to coordinate and capitalize on existing programs for epilepsy awareness” (Govtrack.us, 2011).

20
Copyright © 2012, National Academy of Sciences.
Bookshelf ID: NBK100609

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