Epilepsy Across the Spectrum Promoting Health and Understanding (2012) / Chapter Skim
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8 Public Education and Awareness
8 Public Education and Awareness
Pages 383-424
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From page 383... ...
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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From page 384... ...
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.
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From page 385... ...
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.
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From page 386... ...
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 includes questions on consumer topics such as media habits, product use, lifestyle habits, and health topics.
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From page 387... ...
. 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)
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From page 388... ...
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
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From page 389... ...
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.
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From page 390... ...
adults and 83 percent of those ages 18 to 29 now use social networking websites (Pew Internet and American Life Project, 2011)
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From page 391... ...
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)
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From page 392... ...
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.
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, 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)
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. • 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.
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From page 395... ...
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.
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From page 396... ...
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, ac curate seizure first aid, and sensitive portrayals of epilepsy are portrayed on the big and small screen.
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From page 397... ...
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)
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From page 398... ...
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.
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From page 399... ...
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)
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From page 400... ...
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 American Epilepsy Federation, and the National Epilepsy League; each had separate missions and operating functions (Epilepsy Foundation, 1974)
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From page 401... ...
. 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)
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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.
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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)
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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)
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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)
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. 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.
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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)
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cities by the Epilepsy Foundation (Media Network, Inc., 2003) to learn about the experiences of Hispanic people with epilepsy.
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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.
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From page 410... ...
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.
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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.
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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)
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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.
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. 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)
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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
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, CDC (Centers for Disease Control and Prevention) , Chronic Disease Directors, Epilepsy Foundation, and NAEC (National Association of Epilepsy Centers)
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2011. Seeking support on Face book: A content analysis of breast cancer groups.
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2001a. The Epilepsy Foundation National Teen Survey on Epilepsy: Report of find ings.
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Landover, MD: Epilepsy Foundation of America. Hawley, S
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1989. The impact of media coverage of Nancy Reagan's experience on breast cancer screening.
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From page 421... ...
Landover, MD: Epilepsy Founda tion of America. Medicine: Breast cancer: Fear and facts.
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From page 422... ...
Los Angeles, CA: Epilepsy Foundation of Greater Los Angeles. President's New Freedom Commission on Mental Health.
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From page 423... ...
Identification and the effects of a telenovela breast cancer storyline. Journal of Health Communication 12(5)
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