knowledge, and skills-building needs of patients and families must guide educational efforts.

Lack of Knowledge and Familiarity with Epilepsy

At the time of epilepsy onset and diagnosis, most patients and families probably know as much about epilepsy as the general public does, and their knowledge does not always improve in the period following diagnosis (Elliott and Shneker, 2008). Literature reviews and U.S. surveys show that knowledge about epilepsy among the general public is low (Chapter 8):

•  An analysis of the 2002 Porter Novelli HealthStyles Survey results concluded that only about one-fourth of respondents believed they were knowledgeable about epilepsy, and only about one-third thought they knew what to do in the event of a seizure (Kobau and Price, 2003).

•  A large telephone survey of U.S. Spanish-speaking adults found a similar lack of information about epilepsy and many misperceptions about the causes of seizures, beliefs that people with epilepsy were dangerous, and the use of unconventional treatments such as vitamins, herbal remedies, and spiritual healing (Sirven et al., 2005).

•  According to Paschal and colleagues (2005), lack of knowledge and misperceptions about epilepsy in the African American community increase the stigma burden on African Americans with epilepsy. Moreover, people with epilepsy reported they had to spend a substantial amount of time teaching family members about their disorder.

Research consistently demonstrates that people with epilepsy themselves do not have a solid understanding of basic information about the condition, including knowledge about their diagnosis, seizure precipitants or triggers, specific seizure type(s), the purpose and potential side effects of seizure medications, safety concerns, and the risks and potential consequences of seizures (Bishop and Allen, 2007). In one of the few U.S. studies that examined knowledge about epilepsy among people with the disorder, less than 60 percent of the questions were answered correctly (Long et al., 2000). Thirty percent of respondents believed that epilepsy is contagious or a type of mental disorder. Some of this misinformation had the potential to affect personal safety; for example, 41 percent of people with epilepsy believed that something should be put in the mouth of the person having a seizure, 25 percent thought that women should discontinue medication when they are pregnant, and 25 percent believed it is safe to drive if they



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