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7 Educating People with Epilepsy and Their Families Accurate information for individuals with epilepsy and their families, edu- cation about the consequences of epilepsy, and skills development in self- management are essential components for helping individuals become better partners in patient-centered care. People with epilepsy and their families are often not educated about epilepsy’s risks, including injury and mortality. Parents of children with epilepsy need information about the disorder and available support resources. Children and youth with epilepsy, as they get older, need increasing information about the disorder and its implications for their future. Adults’ information priorities relate to employment, driving, and management of stress; and women need information about hormonal influences on the disorder and the potential effects of seizure medications on pregnancy. Older adults also may have specific information needs, given the likelihood they are taking medications for other chronic health conditions and have an increased risk of falls. People often rely on health care providers for this information, and a wealth of information is offered in written form and online. However, research suggests that both printed and online epilepsy information is written at too high a literacy level. Actions needed to improve education for people with epilepsy and their families include evaluating avail- able educational resources, such as Internet resources and tools; expanding the reach and dissemination of available resources; engaging people with epilepsy and their families in developing and testing educational resources; evaluating, replicating, and expanding the use of self-management programs; and exploring new opportunities for improving education, such as a central- ized web resource to connect people with epilepsy to reliable websites and a certification program for epilepsy health educators. 327
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328 EPILEPSY ACROSS THE SPECTRUM Our introduction to epilepsy came when we were abruptly woken to the sound of Savannah shaking and gagging. Doctors called her seizures at- tacks and spells, but never seizures. . . . [A]s a family living with these [epilepsy] statistics, what do we need? In the early years, we needed the facts—like the fact that approximately 33 percent of people with epilepsy don’t respond to treatment. We lost a great deal of trust in doctors because of their choice to censor. –Tracy Dixon-Salazar T he diagnosis of epilepsy, although given to an individual, affects the entire family and its constellation of friendships and other relation- ships. At onset all are confronted with the immediate need to learn about the disorder and its management. Receiving helpful information and education1 in the diagnostic phase of a chronic health condition can facilitate coping, because early perceptions may affect long-term adjustment to the condition (Johnson, 2003). Living with epilepsy, its unpredictable seizures, and its comorbid conditions presents many challenges over time. Again, continued educational efforts can play a key role in helping people learn to live with and understand epilepsy and its effects over the life span. Thus, individuals and families need education and skills building through- out the course of the disorder, particularly during times of change, such as an increased frequency of seizures, changes in treatment (e.g., switching medications, starting a new treatment option, discontinuing a medication or other treatment option), and major life transitions (e.g., from youth to adulthood, from adulthood to older adulthood). This chapter describes goals and priorities for educating people with epilepsy and their families, their knowledge acquisition needs across the life span, and methods through which individuals and families currently learn about epilepsy. It reviews different models, programs, and approaches to providing epilepsy education that have been developed and contrasts them with educational efforts in other chronic disease fields, in order to identify strategies for improvement. 1 Forthis report, the committee conceptualized awareness, information, education, and skills building as representing a rough continuum of knowledge development regarding epilepsy. Awareness is often the first step in knowledge development (discussed further in Chapter 8) and can be targeted to reducing stigma. For some diseases and conditions, awareness suffices for people in the general public. Information is what the public, to be well informed, needs to know about epilepsy (or other common medical conditions). Information tends to be gen- eral but suffices for most people not involved in the care or supervision of individuals with epilepsy. Education is the goal of efforts to provide more in-depth knowledge that increases understanding, decision-making capacity, and preparedness for action among people with epilepsy, families, and caregivers. Skills-building efforts are aimed at helping people acquire the specific capacities to carry out certain tasks. In the context of epilepsy, skills-building is often aimed at improving self-management and care provided by family members or other caregivers and begins with education.
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329 EDUCATING PEOPLE WITH EPILEPSY AND THEIR FAMIILIES GOALS AND PRIORITIES FOR EDUCATION In conceptualizing goals for patient and family education,2 the com- mittee considered recommendations for health care from the Institute of Medicine in Crossing the Quality Chasm: A New Health System for the 21st Century. The report recommends that health care in the 21st century be patient centered, which involves health care providers’ partnering with patients and families so that the care provided “is respectful of and respon- sive to individual patient preferences, needs, and values and [ensures] that patient values guide all clinical decisions” (IOM, 2001, p. 6). As described in Chapter 4, patient-centered care is the committee’s foundation for an epilepsy care model. The medical literature supports the importance of a patient-centered approach and indicates that people prefer patient-centered care. It even suggests which aspects of patient-centered care are most im- portant to them. For example, a study of UK patients found that three important components of a patient-centered approach were “communica- tion, partnership, and health promotion” (Little et al., 2001, p. 468). For patient-centered care and physician-patient partnerships to work, consis- tent, relevant health education efforts for patients and families are required. Cochrane (1995) emphasizes that epilepsy education helps people with epilepsy become self-confident, competent in self-management, aware of their needs, and able to access resources to meet their needs—in other words, it helps them become better partners in patient-centered care. More- over, having accurate, in-depth information about epilepsy helps people bet- ter understand the disorder, prevents misconceptions, and reduces concerns about stigma. Finally, epilepsy education helps promote optimal well-being and quality of life. The committee’s vision is for all individuals with epilepsy and their families to have access to relevant and usable knowledge to meet their individual needs and allow them to participate effectively in patient- centered care, to be competent in the management of their epilepsy, and to attain the best possible physical and emotional well-being. UNDERSTANDING INFORMATION NEEDS In patient-centered care, the specific health and quality-of-life needs of people with epilepsy and their family members must be paramount in guid- ing the care provided by health professionals; similarly, the information, 2 As noted in Chapter 1, terminology is a challenge for people with epilepsy and for the field in general. The committee was purposeful in the terms used throughout this report. The com- mittee recognizes that people with epilepsy and their families should not always be identified as patients, and throughout the report individuals are usually referred to as patients only when there is a direct intersection with health care providers or the health care system. However, for the sake of brevity, the committee uses the phrase “patient and family education” or “patient and caregiver education” in this chapter.
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330 EPILEPSY ACROSS THE SPECTRUM 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 re- sults 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 mispercep- tions 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 com- munity increase the stigma burden on African Americans with epi- lepsy. 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 them- selves 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 conse- quences 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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331 EDUCATING PEOPLE WITH EPILEPSY AND THEIR FAMIILIES double their medication dose before driving, do not drive alone, or pull over when they feel a seizure coming on (Long et al., 2000). When children lack knowledge about epilepsy, they are more likely to be worried and to have more negative attitudes about having epilepsy (Austin et al., 2006b). Moreover, when parents of children with epilepsy lack ad- equate knowledge or hold inaccurate beliefs about epilepsy, they may develop negative attitudes and reduced expectations for their children (Frank-Briggs and Alikor, 2011). Knowledge Needs of All People with Epilepsy and Their Families The literature indicates that all individuals with epilepsy and their fami- lies need to receive some level of education about the disorder, especially as it relates to each person’s specific diagnosis and treatment plan. It is espe- cially important that individuals with epilepsy and their families be given, preferably in writing, specific information about their syndrome, seizure type, and treatment plan. A review of literature on health information for adults with epilepsy by Couldridge and colleagues (2001) identified specific information needs related to diagnosis and treatment options, medications and their side effects, seizures and seizure control, safety and injury pre- vention, and common social and psychological problems. Individuals with epilepsy and their families also need to be informed about the full range of comorbid conditions associated with the disorder, including mental health, cognitive, neurological, and somatic disorders (Chapter 3). People with epilepsy and their family members may have many fears when the diagnosis is made. The onset of epilepsy during childhood can be particularly frightening (Oostrom et al., 2001), and seeing seizures may make parents believe their child’s condition is life-threatening (Besag et al., 2005). Children and adults with epilepsy likewise fear that mental health conditions, injury, or death may ensue (Austin, 2000). To manage these fears and prevent unnecessary anxiety, people with epilepsy and their families need complete and accurate information about the comorbidities and mortality risks associated with epilepsy, including sudden unexpected death in epilepsy (SUDEP), suicide, the risks of seizure-related injuries, and the risks of prolonged seizures such as status epilepticus (Ficker et al., 1998; Kwon et al., 2011; So et al., 2009). Patients and families need to be made aware of the risk for suicidal ideation associated with seizure medica- tion, including symptoms of depression and mood changes that should be reported to health care providers (FDA, 2008). My son, Tyler Joseph Stevenson, passed away on January 23, 2011, from a seizure in his sleep at the young age of 20. The more research we do and the interactions with families who have lost loved ones to SUDEP all share that they were never advised that their loved one could die from epilepsy
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332 EPILEPSY ACROSS THE SPECTRUM or a seizure. I knew in my previous research that people with epilepsy do not normally live as long as others but did not think that Tyler would die so young. –Mark J. Stevenson My son, Dallas, at the age of 5, passed away on January 12, 2011, of SUDEP. I and many other parents had never even heard of SUDEP until we lost our child. Physicians don’t want to scare parents, so they don’t discuss SUDEP, but the medical community has a responsibility to prop- erly inform patients and parents of SUDEP risk factors. The risk factors may not always be controlled, but it is only fair to tell parents the risks that are involved. –Mylissa Daniels The majority of families first hear about [SUDEP] upon the loss of their loved one. Realization of a lack of prior knowledge can have a devastating emotional impact, not only for individuals bereaved by a death in their family but also for individuals who first learn of SUDEP after having lived with epilepsy for some time. Education and communication is paramount to prevent this. –Tamzin Jeffs During its public workshops, the committee heard testimony from several families who had lost loved ones due to SUDEP; all of the families reported that health professionals had not discussed SUDEP with them, and they advocated for SUDEP education and information for people with epi- lepsy and their families (see excerpts of testimony above). Additional work is necessary to determine if health professionals need more education and knowledge about SUDEP generally and if they need more education on how to discuss this and other sensitive topics related to risks and mortality with their patients. Hirsch and colleagues (2011) recommended the development of evidence-based guidelines to inform health professionals of “why, when, and how SUDEP should be discussed with people affected by epilepsy” (p. 1937) based on discussion at a 2008 SUDEP workshop hosted by the National Institute of Neurological Disorders and Stroke. Additionally, the efficacy and reach of existing SUDEP educational materials designed for health professionals and individuals with epilepsy and their families needs to be reviewed and additional materials may have to be developed. Interviews with UK adults with epilepsy indicated a desire for more information about a broad range of disease-related topics, including mor- tality risks (Prinjha et al., 2005). A survey of UK neurologists indicated that only 30 percent discussed SUDEP with all or a majority of their patients, and one of the most common reasons for such a discussion was that the patients requested it (Morton et al., 2006). Similarly, a UK survey of pediatric neurologists and parents found that 91 percent of the parents desired information about SUDEP, but only 20 percent of the neurologists
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333 EDUCATING PEOPLE WITH EPILEPSY AND THEIR FAMIILIES consistently provided it to all patients (Gayatri et al., 2010). In this study, 61 percent of parents did not want their children to be told about SUDEP, while 21 percent did. Of those wanting their children to be told, almost half of the parents wanted to be the ones to tell them, and about one-third wanted the health professional to do so (Gayatri et al., 2010). People with epilepsy and their families also need information about living a healthy lifestyle, not only because of the impact of epilepsy, but also because of the associated physical comorbidities (e.g., diabetes, heart disease, high blood pressure). A survey of adults showed that in addition to information about epilepsy and their treatment, they wanted informa- tion on self-management, available social and community resources, sup- port groups, and counseling (Paschal et al., 2007). Box 7-1 provides an overview of these broad information needs. Having access to information about healthy lifestyles and community resources is essential for ensuring that people with epilepsy are able to achieve the best possible quality of life (see also Chapter 6). In a survey conducted by Paschal and colleagues (2007), concerns about stigma were prominent, with 89 percent of respondents perceiving that the public lacks awareness of and knowledge about epilepsy, 65 per- cent experiencing stress because of this lack of awareness, and 42 percent reporting stigma in the general public. Feelings of secrecy, shame, and worry about stigma also were identified in a qualitative study of children and adolescents (Lewis and Parsons, 2008). As described in Chapter 6, stigma has been associated with diminished quality of life. Additional work is needed to examine the role that educational materials and programs, support groups, and counseling resources may play in helping individuals and their families successfully cope with stigma and related concerns, such as the fear of having a seizure in public. Knowledge Needs of Children, Adolescents, and Youth Transitioning to Adulthood Studies consistently indicate that children and adolescents with epilepsy need increasing knowledge about their condition over time, tailored to their growing ability to comprehend the information and its implications. Empirical evidence suggests that children’s information needs are not being met. For example, a prospective study indicated that these needs remained high even 2 years after seizure onset, with 64 percent of children continuing to have questions about epilepsy’s causes, 64 percent still wanting to talk to another child who has seizures, and 62 percent wanting more information about keeping safe during a seizure (Shore et al., 2009). Children and adolescents want to understand and resolve their fears related to epilepsy, to understand how it might affect their future, and to
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334 EPILEPSY ACROSS THE SPECTRUM EXAMPLES OF BROAD KNOWLEDGE AREAS FOR Box 7-1 PEOPLE WITH EPILEPSY AND THEIR FAMILIES Basic Educational Needs of All People with Epilepsy • pilepsy—seizure type, syndrome, causes E • reatment and management—options, medications, devices, surgery, dietary T modifications, side effects, treatment discontinuation, seizure triggers, risk for suicidal ideation associated with medications, other management strategies • afety risks—risk assessment, seizure first aid, injury prevention, equipment to S prevent injury • ortality risks—sudden unexpected death in epilepsy, status epilepticus, M seizure-related injury, suicide • ealthy lifestyle—general health, sleep, fatigue, physical exercise H • ossible comorbidities P ental health (e.g., anxiety, depression, attention problems, behavior prob- M lems, psychosis, seizure-like events with a psychological basis) Cognitive (e.g., memory, information processing problems, learning problems) Neurological (e.g., stroke, autism spectrum disorders, migraine) Somatic (e.g., heart disease, bone health) • ocial concerns—engaging new friends, seizures in social settings, telling oth- S ers, family burden, stigma • motional response—coping, dealing with fears, stress management E • vailable informational and community resources—websites, state and local A Epilepsy Foundation affiliates, community agencies, health care providers Specific Educational Needs for Population Subgroups Children, adolescents, and youth transitioning to adulthood • chool—managing seizures at school, common learning problems, safety, partici- S pation in extracurricular activities learn how to manage it in their daily lives, especially at school (McNelis et al., 1998). A UK study demonstrated that providing information about mortality, including SUDEP, is especially relevant for youth, because of the higher death rates in individuals under age 30 who have long-term epilepsy (Mohanraj et al., 2006). While reluctant to initiate a conversation about sensitive topics such as alcohol use and sexual activity, older adolescents participated in these discussions when health professionals began them (Lewis et al., 2010). However, the researchers found that young people believed health professionals were more interested in providing medical information than in helping with more practical aspects of daily living (Lewis et al., 2010). Youth transitioning into adulthood need information and knowledge that will help them assume appropriate responsibility for managing their epilepsy and living a healthy lifestyle. However, few studies could be found
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335 EDUCATING PEOPLE WITH EPILEPSY AND THEIR FAMIILIES • ental health—attention deficit hyperactivity disorder, autism spectrum disor- M ders, social withdrawal • ealing with fears—future, death, mental health conditions, stigma D • ifestyle management—establishing healthy habits L • pportunity to discuss sensitive information, such as puberty, sexuality, drugs, O and alcohol • areer planning C • ransition to adulthood, such independence and driving T Adults • C areer and vocational concerns • D iscussions with employers • D riving regulations and transportation concerns • S exual and gender-specific topics, such as reproductive health and family plan- ning, hormonal changes and seizure frequency, effects of seizure medications on pregnancy • rug-alcohol interactions D • mpact on relationships I • ndependent living I Older adults • M edication side effects, adverse interactions, and adherence • D rug-alcohol interactions • I ndependent living • S afety and injury risks that focused on the needs of this “in-transition” group. Jurasek and col- leagues (2010) believe these youth need to be knowledgeable about the following: • Epilepsy management—Knowledge about their specific epilepsy condition (e.g., specific syndrome, seizure type and triggers) and treatment plans helps them make informed decisions about care. • Topics that emerge during adolescence—Knowledge about topics such as sexuality, alcohol and drug use, and driving, in the context of living with epilepsy, helps to support informed decision making. • Living independently—Skills that facilitate independent living are related to (1) education, career, and employment decisions; (2) living a healthy lifestyle, including managing stress and getting sufficient sleep; (3) self-management skills, such as knowing which
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336 EPILEPSY ACROSS THE SPECTRUM health care provider to contact, getting to appointments, knowing how to fill prescriptions, and medication adherence strategies; and (4) obtaining and paying for medications. Knowledge Needs of Adults In a large national survey, adults with epilepsy indicated that they have many fears related to seizures or dying during a seizure and that they face specific social challenges, including potential embarrassment about hav- ing a seizure in public (Fisher, 2000). Areas in which adults desired more information were related to employment (e.g., discussion of epilepsy with employers), the link between seizures and stress, dealing with cognitive problems, managing their emotions, and sleep and fatigue (Fraser et al., 2011). In another study, adults also needed more information about driving regulations (Couldridge et al., 2001) (see also Chapter 6). Gender-Specific Needs The predominant knowledge needs of women and men with epilepsy are summarized in Box 7-2. Women The specific knowledge needed by women with epilepsy, which may vary by age, has generally received insufficient attention. Because sex hormones can affect seizure frequency, girls and women need information related to hormonal fluctuations and seizure frequency.3 Further, women of reproductive age need to understand how their epilepsy and its treatment could affect pregnancy. In a UK survey, adult women with epilepsy between the ages of 19 and 44 identified their most important information needs as relating to risks of epilepsy and medication affecting the fetus (87 percent), the effect of pregnancy on seizure control (49 percent), and the risk of their children developing epilepsy (42 percent) (Crawford and Hudson, 2003). For example, recent findings that show an increased risk for congenital malformations and impaired cognition in children of women treated during pregnancy with valproate, a commonly used seizure medication, suggest that all women of child-bearing age need to be kept apprised of the lat- est research in this area (Harden et al., 2009). Women with epilepsy also have been found to have higher-than-expected rates of sexual dysfunction (Pennell and Thompson, 2009). Among women over age 44, the most 3 Studies have found higher-than-expected onset of seizures during the year of menarche; in girls with preexisting seizures, 29 percent experienced more frequent seizures during peri- menarche (Klein et al., 2003). Because of hormonal fluctuation, some women have a cyclic pattern of seizure frequency associated with their menses that often is unrecognized (Pennell and Thompson, 2009).
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337 EDUCATING PEOPLE WITH EPILEPSY AND THEIR FAMIILIES EXAMPLES OF SPECIFIC KNOWLEDGE NEEDS FOR Box 7-2 WOMEN AND MEN • regnancy, effects of medications on the fetus, and breastfeeding (women) P • one health B • ormonal states (e.g., sexual dysfunction; fertility rates; for women: menarche, H monthly hormonal patterns, menopause, hormone replacement therapy) • exual dysfunction S • eproductive endocrine disorders (women) R • riving and transportation D • mployment E • ognitive problems—memory C • ocial concerns S important information needs concerned epilepsy medication and osteopo- rosis (63 percent), seizure medications and aging (57 percent), and seizure changes during menopause (44 percent) (Crawford and Hudson, 2003). Men One of the least studied subgroups of people with epilepsy is men. Studies show that men with epilepsy are less likely to be married, they have lower-than-expected fertility rates, and about one-fourth have problems with sexual dysfunction (Pennell and Thompson, 2009). In one of the few studies examining the perceptions and experiences of adult men with epi- lepsy, 18 percent rated themselves at the highest level of knowledge about the condition, but 25 percent said they have a low level of knowledge (Sare et al., 2007). In that study, the men’s most common concerns related to limitations on driving and employment. More than half of the men reported that their epilepsy affected them either “a lot” or “some” in other areas, such as memory problems, confidence, ambition and plans for the future, sense of self-esteem, overall health, social life, and quality of life. Finally, more than half indicated that they worried about the possibility that their children might inherit their epilepsy. Knowledge Needs of Older Adults The education needs of older adults with epilepsy, their family mem- bers, and other caregivers are poorly understood and underexplored (Martin et al., 2003). The committee found few studies that considered them. Likely areas for education were identified by extrapolating factors that are unique to older adults with epilepsy. For example, because older adults are especially vulnerable to the adverse effects of medication (Leppik, 2006), they need education about the side effects of seizure medications, particularly given the likely complications of aging-related factors, such as
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372 EPILEPSY ACROSS THE SPECTRUM effectiveness of generic chronic care versus epilepsy-specific educa- tion programs individually and in combination are needed. • The use of the Internet presents many potential opportunities to ex- pand the reach and sophistication of epilepsy education programs, enabling them to respond to the needs of individual learners of dif- ferent literacy levels, language proficiencies, cultural backgrounds, and learning styles. Increased availability of online educational information and the use of social networking websites provide new opportunities for sharing information about the epilepsies and providing interpersonal support. • Individuals and their families need guidance to ensure that they are connected to the most accurate and reliable information resources and tools available, especially those available online. • High-quality, validated epilepsy education programs can pro- vide individuals, families, and caregivers with accurate informa- tion and education to build the skills needed to achieve optimal self-management. In order to be effective and to maximize reach, programs eventually will need to stratify and balance many dimensions—the severity of the disorders, the existence of co- morbidities, the racial/ethnic and cultural background of users, language, the level of general literacy and health literacy, age and gender, and preferred learning styles. Throughout this chapter, the committee has provided the basis for its research priorities and recommendations regarding improvements needed in education for people with epilepsy and their families, which are detailed in Chapter 9. In order to improve this education and build the necessary knowledge and skills of people with epilepsy and their families, additional research and time needs to be devoted to • evaluating available educational resources and tools, including those available on the Internet; • expanding the reach and dissemination of available resources; • engaging people with epilepsy and their families in developing and testing educational resources; • evaluating, replicating, and expanding the use of self-management programs; and • exploring new opportunities for improving education, such as a centralized web resource to connect people with epilepsy to reliable websites and a certification program for epilepsy health educators.
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373 EDUCATING PEOPLE WITH EPILEPSY AND THEIR FAMIILIES REFERENCES AES (American Epilepsy Society), CDC (Centers for Disease Control and Prevention), Chronic Disease Directors, Epilepsy Foundation, and NAEC (National Association of Epilepsy Centers). 2004. Living Well with Epilepsy II: Report of the 2003 National Conference on Public Health and Epilepsy: Priorities for a public health agenda on epilepsy. http:// www.cdc.gov/epilepsy/pdfs/living_well_2003.pdf (accessed February 2, 2012). Arhan, E., A. Serdaroglu, S. Soysal, A. Ozcelik, K. Gucuyener, and E. Demir. 2009. Assessment of mothers’ knowledge and perceptions of electroencephalography and determination of the short-term effect of an informational leaflet. Epilepsy and Behavior 15(4):491-495. Austin, J. 2000. Impact of epilepsy in children. Epilepsy and Behavior 1(1):S9-S11. Austin, J. K., and J. Tooze. 2003. Parenting the daughter with epilepsy. In Women with epi- lepsy: A handbook of health and treatment issues, edited by M. J. Morrell and K. Flynn. Cambridge, UK: Cambridge University Press. Pp. 249-262. Austin, J. K., A. M. McNelis, C. P. Shore, D. W. Dunn, and B. Musick. 2002. A feasibility study of a family seizure management program: Be Seizure Smart. Journal of Neurosci- ence Nursing 34(1):30-37. Austin, J. K., D. A. Carr, and B. P. Hermann. 2006a. Living Well II: A review of progress since 2003. Epilepsy and Behavior 9(3):386-393. Austin, J. K., D. W. Dunn, S. M. Perkins, and J. Shen. 2006b. Youth with epilepsy: Develop- ment of a model of children’s attitudes toward their condition. Children’s Health Care 35(2):123-140. Bandura, A. 1976. Social learning theory. Upper Saddle River, NJ: Prentice Hall. ———. 1997. Self-efficacy: The exercise of control. New York: W.H. Freeman and Company. Bautista, R. E., C. Graham, and S. Mukardamwala. 2011. Health disparities in medication adherence between African-Americans and Caucasians with epilepsy. Epilepsy and Be- havior 22(3):495-498. Berkman, N., S. Sheridan, K. Donahue, D. Halpern, A. Viera, K. Crotty, A. Holland, M. Brasure, K. Lohr, E. Harden, E. Tant, I. Wallace, and M. Viswanathan. 2011. Health literacy interventions and outcomes: An updated systematic review. Evidence report/tech- nology assessment no. 199. Rockville, MD: Agency for Healthcare Research and Quality. Besag, F. M., A. Nomayo, and F. Pool. 2005. The reactions of parents who think that a child is dying in a seizure—In their own words. Epilepsy and Behavior 7(3):517-523. Bishop, M., and C. Allen. 2007. Coping with epilepsy: Research and intervention. In Coping with chronic illness and disability: Theoretical, empirical, and clinical aspects, edited by E. Martz and H. Livneh. New York: Springer Publishing Co. Pp. 241-266. Black, A. P., and M. Baker. 2011. The impact of parent advocacy groups, the Internet, and social networking on rare diseases: The IDEA League and IDEA League United Kingdom example. Epilepsia 52(Suppl. 2):102-104. Bradley, P. M., and B. Lindsay. 2009. Care delivery and self-management strategies for adults with epilepsy. Cochrane Database of Systematic Reviews 1:CD006244. Buelow, J. M. 2001. Epilepsy management issues and techniques. Journal of Neuroscience Nursing 33(5):260-269. ———. 2007. An intervention for parents of children with epilepsy and significant learning problems: Lessons learned from a feasibility study. Journal of the American Psychiatric Nurses Association 13(3):146-152. Buelow, J. M., and J. Johnson. 2000. Self-management of epilepsy: A review of the concept and its outcomes. Disease Management and Health Outcomes 8(6):327-336. Buelow, J. M., A. McNelis, C. P. Shore, and J. K. Austin. 2006. Stressors of parents of children with epilepsy and intellectual disability. Journal of Neuroscience Nursing 38(3):147-154, 176. Burneo, J. G. 2006. An evaluation of the quality of epilepsy education on the Canadian world wide web. Epilepsy and Behavior 8(1):299-302.
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374 EPILEPSY ACROSS THE SPECTRUM Carton, S., P. J. Thompson, and J. S. Duncan. 2003. Non-epileptic seizures: Patients’ under- standing and reaction to the diagnosis and impact on outcome. Seizure 12(5):287-294. CDC (Centers for Disease Control and Prevention). 2011. Health literacy: Guidance and standards. http://www.cdc.gov/healthliteracy/DevelopMaterials/GuidanceStandards.html (accessed August 24, 2011). CDC, AES (American Epilepsy Society), Epilepsy Foundation, and NAEC (National As- sociation of Epilepsy Centers). 1997. Living Well with epilepsy: Report of the 1997 National Conference on Public Health and Epilepsy. http://www.cdc.gov/epilepsy/pdfs/ living_well_1997.pdf (accessed February 2, 2012). Census Bureau. 2012. Adult computer and adult Internet users by selected characteristics: 2000 to 2011. http://www.census.gov/compendia/statab/2012/tables/12s1158.pdf (ac- cessed February 22, 2012). Chiou, H. H., and L. P. Hsieh. 2008. Parenting stress in parents of children with epilepsy and asthma. Journal of Child Neurology 23(3):301-306. Clark, A. J., C. A. Espie, and A. Paul. 2001. Adults with learning disabilities and epilepsy: Knowledge about epilepsy before and after an educational package. Seizure 10(7): 492-499. Clark, N. M., S. Stoll, E. J. Youatt, M. Sweetman, R. Derry, and A. Gorelick. 2010. Foster- ing epilepsy self management: The perspectives of professionals. Epilepsy and Behavior 19(3):255-263. CMS (Centers for Medicare and Medicaid Services). 2011a. Toolkit for making written mate- rial clear and effective: Part 2. Using a reader-centered approach to develop and test writ- ten material. https://www.cms.gov/WrittenMaterialsToolkit/Downloads/ToolkitPart02. pdf (accessed August 25, 2011). ———. 2011b. Toolkit for making written material clear and effective: Part 7. Using read- ability formulas: A cautionary note. https://www.cms.gov/WrittenMaterialsToolkit/ Downloads/ToolkitPart07.pdf (accessed Feb-ruary 22, 2012). Cochrane, J. 1995. Patient education: Lessons from epilepsy. Patient Education and Counsel- ing 26(1-3):25-31. Cohen, A., M. Lancman, H. Mogul, S. Marks, and K. Smith. 1997. Strategies to protect bone mass in the older patient with epilepsy. Geriatrics 52(8):70, 75-78, 81. Colagiuri, R., and C. A. Eigenmann. 2009. A national consensus on outcomes and indicators for diabetes patient education. Diabetic Medicine 26(4):442-446. Couldridge, L., S. Kendall, and A. March. 2001. A systematic overview—A decade of research. The information and counselling needs of people with epilepsy. Seizure 10(8):605-614. Crawford, P., and S. Hudson. 2003. Understanding the information needs of women with epi- lepsy at different lifestages: Results of the “Ideal World” survey. Seizure 12(7):502-507. Cushner-Weinstein, S., K. Dassoulas, J. A. Salpekar, S. E. Henderson, P. L. Pearl, W. D. Gaillard, and S. L. Weinstein. 2008. Parenting stress and childhood epilepsy: The impact of depression, learning, and seizure-related factors. Epilepsy and Behavior 13(1):109-114. Davis, T. C., E. J. Mayeaux, D. Fredrickson, J. A. Bocchini, Jr., R. H. Jackson, and P. W. Murphy. 1994. Reading ability of parents compared with reading level of pediatric pa- tient education materials. Pediatrics 93(3):460-468. Deci, E. L., and R. M. Ryan. 1985. Intrinsic motivation and self-determination in human behavior. New York: Plenum Press. Devinsky, O. 2011. Sudden, unexpected death in epilepsy. New England Journal of Medicine 365(19):1801-1811. DiIorio, C. 1997. Epilepsy self-management. In Handbook of health behavior research II: Provider determinants. New York: Plenum Press. Pp. 213-230.
OCR for page 375
375 EDUCATING PEOPLE WITH EPILEPSY AND THEIR FAMIILIES ———. 2011. Education for self-management. PowerPoint presented at the IOM Workshop on Public Health Dimensions of the Epilepsies, June 28. http//iom.edu/~/media/Files/ Activity%20Files/Disease/Epilepsy/Panel%205%20DiIorio.pdf (accessed February 22, 2012). DiIorio, C., P. Osborne Shafer, R. Letz, T. Henry, D. L. Schomer, and K. Yeager. 2003. The association of stigma with self-management and perceptions of health care among adults with epilepsy. Epilepsy and Behavior 4(3):259-267. ———. 2004. Project EASE: A study to test a psychosocial model of epilepsy medication managment. Epilepsy and Behavior 5(6):926-936. DiIorio, C., C. Escoffery, F. McCarty, K. A. Yeager, T. R. Henry, A. Koganti, E. L. Reisinger, and B. Wexler. 2009a. Evaluation of WebEase: An epilepsy self-management web site. Health Education Research 24(2):185-197. DiIorio, C., C. Escoffery, K. A. Yeager, F. McCarty, T. R. Henry, A. Koganti, E. Reisinger, E. Robinson, R. Kobau, and P. Price. 2009b. WebEase: Development of a web-based epi- lepsy self-management intervention. Preventing Chronic Disease 6(1):A28. DiIorio, C. K., Y. A. Bamps, A. L. Edwards, C. Escoffery, N. J. Thompson, C. E. Begley, R. Shegog, N. M. Clark, L. Selwa, S. C. Stoll, R. T. Fraser, P. Ciechanowski, E. K. Johnson, R. Kobau, and P. H. Price. 2010. The Prevention Research Centers’ Managing Epilepsy Well Network. Epilepsy and Behavior 19(3):218-224. DiIorio, C., Y. Bamps, E. R. Walker, and C. Escoffery. 2011. Results of a research study evaluating WebEase, an online epilepsy self-management program. Epilepsy and Behavior 22(3):469-474. Donald, I. P., and C. J. Bulpitt. 1999. The prognosis of falls in elderly people living at home. Age and Ageing 28(2):121-125. Eichner, J., and P. Dullabh. 2007. Accessible health information technology (IT) for popula- tions with limited literacy: A guide for developers and purchasers of health IT. AHRQ Publication No. 08-0010-EF. Rockville, MD: National Resource Center for Health IT. Elliott, J. O., and B. F. Shneker. 2008. Patient, caregiver, and health care practitioner knowledge of, beliefs about, and attitudes toward epilepsy. Epilepsy and Behavior 12(4):547-556. ———. 2009. A health literacy assessment of the epilepsy.com website. Seizure 18(6):434-439. Elliott, J. O., C. Charyton, and L. Long. 2007. A health literacy assessment of the national Epilepsy Foundation web site. Epilepsy and Behavior 11(4):525-532. Escoffery, C., C. Diiorio, K. A. Yeager, F. McCarty, E. Robinson, E. Reisinger, T. Henry, and A. Koganti. 2008. Use of computers and the Internet for health information by patients with epilepsy. Epilepsy and Behavior 12(1):109-114. Faught, E., M. S. Duh, J. R. Weiner, A. Guerin, and M. C. Cunnington. 2008. Nonadher- ence to antiepileptic drugs and increased mortality: Findings from the RANSOM study. Neurology 71(20):1572-1578. FDA (Food and Drug Administration). 2008. Information for healthcare professionals: Suicidal behavior and ideation and antiepileptic drugs. http://www.fda.gov/Drugs/Drug safety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm100192.htm (ac- cessed January 5, 2012). Ferro, M. A., and K. N. Speechley. 2009. Depressive symptoms among mothers of children with epilepsy: A review of prevalence, associated factors, and impact on children. Epi- lepsia 50(11):2344-2354. Ficker, D. M., E. L. So, W. K. Shen, J. F. Annegers, P. C. O’Brien, G. D. Cascino, and P. G. Belau. 1998. Population-based study of the incidence of sudden unexplained death in epilepsy. Neurology 51(5):1270-1274. Fife, T. D., D. Blum, and R. S. Fisher. 2006. Measuring the effects of antiepileptic medications on balance in older people. Epilepsy Research 70(2-3):103-109. Fisher, R. S. 2000. Epilepsy from the patient’s perspective: Review of results of a community- based survey. Epilepsy and Behavior 1(4):S9-S14.
OCR for page 376
376 EPILEPSY ACROSS THE SPECTRUM Foster, D. R., and D. H. Rhoney. 2002. Readability of printed patient information for epileptic patients. Annals of Pharmacotherapy 36(12):1856-1861. Frank-Briggs, A. I., and E. A. Alikor. 2011. Knowledge and attitudes of parents toward chil- dren with epilepsy. Annals of African Medicine 10(3):238-242. Fraser, R. T., E. K. Johnson, J. W. Miller, N. Temkin, J. Barber, L. Caylor, P. Ciechanowski, and N. Chaytor. 2011. Managing epilepsy well: Self-management needs assessment. Epilepsy and Behavior 20(2):291-298. Gaitatzis, A., K. Carroll, A. Majeed, and J. W. Sander. 2004. The epidemiology of the comor- bidity of epilepsy in the general population. Epilepsia 45(12):1613-1622. Gayatri, N. A., M. C. Morrall, V. Jain, P. Kashyape, K. Pysden, and C. Ferrie. 2010. Parental and physician beliefs regarding the provision and content of written sudden unexpected death in epilepsy (SUDEP) information. Epilepsia 51(5):777-782. Gaynor, D., H. Cock, and N. Agrawal. 2009. Psychological treatments for functional non- epileptic attacks: A systematic review. Acta Neuropsychiatrica 21(4):158-168. Gilliam, F., P. E. Penovich, C. A. Eagan, J. M. Stern, D. M. Labiner, M. Onofrey, G. L. Holmes, E. Mathis, and J. Cramer. 2009. Conversations between community-based neurologists and patients with epilepsy: Results of an observational linguistic study. Epilepsy and Behavior 16(2):315-320. Glueckauf, R. L., S. P. Fritz, E. P. Ecklund-Johnson, H. J. Liss, P. Dages, and P. Carney. 2002. Videoconferencing-based family counseling for rural teenagers with epilepsy: Phase 1 findings. Rehabilitation Psychology 47(1):49-72. Goldstein, L. H., T. Chalder, C. Chigwedere, M. R. Khondoker, J. Moriarty, B. K. Toone, and J. D. C. Mellers. 2010. Cognitive-behavioral therapy for psychogenic nonepileptic seizures: A pilot RCT. Neurology 74(24):1986-1994. Grey, M., K. Knafl, and R. McCorkle. 2006. A framework for the study of self- and family management of chronic conditions. Nursing Outlook 54(5):278-286. Hall-Patch, L., R. Brown, A. House, S. Howlett, S. Kemp, G. Lawton, R. Mayor, P. Smith, and M. Reuber. 2010. Acceptability and effectiveness of a strategy for the communication of the diagnosis of psychogenic nonepileptic seizures. Epilepsia 51(1):70-78. Harden, C. L., K. J. Meador, P. B. Pennell, W. A. Hauser, G. S. Gronseth, J. A. French, S. Wiebe, D. Thurman, B. S. Koppel, P. W. Kaplan, J. N. Robinson, J. Hopp, T. Y. Ting, B. Gidal, C. A. Hovinga, A. N. Wilner, B. Vazquez, L. Holmes, A. Krumholz, R. Finnell, D. Hirtz, C. Le Guen, the American Academy of Neurology, and the American Epilepsy Society. 2009. Management issues for women with epilepsy—Focus on preg- nancy (an evidence-based review): II. Teratogenesis and perinatal outcomes: Report of the Quality Standards Subcommittee and Therapeutics and Technology Subcommittee of the American Academy of Neurology and the American Epilepsy Society. Epilepsia 50(5):1237-1246. Health Literacy Innovations. 2012. Improving health communication one word at a time. http://www.healthliteracyinnovations.com/home (accessed February 22, 2012). Health On the Net Foundation. 2011. The commitment to reliable health and medical information on the Internet. http://www.hon.ch/HONcode/Patients/Visitor/visitor.html (accessed January 26, 2012). Helgeson, D. C., R. Mittan, S. Y. Tan, and S. Chayasirisobhon. 1990. Sepulveda Epilepsy Education: The efficacy of a psychoeducational treatment program in treating medical and psychosocial aspects of epilepsy. Epilepsia 31(1):75-82. Hirsch, L. J., E. J. Donner, E. L. So, M. Jacobs, L. Nashef, J. L. Noebels, and J. R. Buchhalter. 2011. Abbreviated report of the NIH/NINDS Workshop on Sudden Unexpected Death in Epilepsy. Neurology 76(22):1932-1938. Hitiris, N., S. Suratman, K. Kelly, L. J. Stephen, G. J. Sills, and M. J. Brodie. 2007. Sud- den unexpected death in epilepsy: A search for risk factors. Epilepsy and Behavior 10(1):138-141.
OCR for page 377
377 EDUCATING PEOPLE WITH EPILEPSY AND THEIR FAMIILIES Houts, P. S., C. C. Doak, L. G. Doak, and M. J. Loscalzo. 2006. The role of pictures in im- proving health communication: A review of research on attention, comprehension, recall, and adherence. Patient Education and Counseling 61(2):173-190. IOM (Institute of Medicine). 2001. Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press. ———. 2004. Health literacy: A prescription to end confusion. Washington, DC: The National Academies Press. ———. 2009. Health literacy, eHealth, and communication: Putting the consumer first: Work- shop summary. Washington, DC: The National Academies Press. Jack, L. 2003. Diabetes self-management education research: An international review of inter- vention methods, theories, community partnerships and outcomes. Disease Management and Health Outcomes 11(7):415-428. Jantzen, S., E. Muller-Godeffroy, T. Hallfahrt-Krisl, F. Aksu, B. Pust, B. Kohl, A. Redlich, J. Sperner, and U. Thyen. 2009. FLIP&FLAP: A training programme for children and adolescents with epilepsy, and their parents. Seizure 18(7):478-486. Johnson, J. 2003. On receiving the diagnosis of multiple sclerosis: Managing the transition. Multiple Sclerosis 9(1):82-88. Jurasek, L., L. Ray, and D. Quigley. 2010. Development and implementation of an adolescent epilepsy transition clinic. Journal of Neuroscience Nursing 42(4):181-189. Kendall, S., D. Thompson, and L. Couldridge. 2004. The information needs of carers of adults diagnosed with epilepsy. Seizure 13(7):499-508. Klein, P., L. M. van Passel-Clark, and J. C. Pezzullo. 2003. Onset of epilepsy at the time of menarche. Neurology 60(3):495-497. Kobau, R., and P. Price. 2003. Knowledge of epilepsy and familiarity with this disorder in the U.S. population: Results from the 2002 HealthStyles Survey. Epilepsia 44(11):1449-1454. Kushinga, K. 2007. Practice and research—The PEPE project—Katrina Kushinga describes how a German epilepsy education programme was adapted with the help of service users. Learning Disability Practice 10(5):10-13. Kutner, M., E. Greenberg, Y. Jin, and C. Paulsen. 2006. The health literacy of America’s adults: Results from the 2003 National Assessment of Adult Literacy. Washington, DC: National Center for Education Statistics. Kwon, C., M. Liu, H. Quan, V. Thoo, S. Wiebe, and N. Jetté. 2011. Motor vehicle accidents, suicides, and assaults in epilepsy: A population-based study. Neurology 76(9):801-806. LaFrance, W. C., Jr., I. W. Miller, C. E. Ryan, A. S. Blum, D. A. Solomon, J. E. Kelley, and G. I. Keitner. 2009. Cognitive behavioral therapy for psychogenic nonepileptic seizures. Epilepsy and Behavior 14(4):591-596. Leppik, I. E. 2006. Epilepsy in the elderly. Epilepsia 47(Suppl. 1):65-70. Leventhal, H., M. Diefenbach, and E. A. Leventhal. 1992. Illness cognition: Using common sense to understand treatment adherence and affect cognition interactions. Cognitive Therapy and Research 16(2):143-163. Lewis, A., and S. Parsons. 2008. Understanding of epilepsy by children and young people with epilepsy. European Journal of Special Needs Education 23(4):321-335. Lewis, D. 2005. Delivery of online learning for healthcare consumers. In Consumer health informatics: Informing consumers and improving health care. Health Informatics Series, edited by D. Lewis, G. Eysenbach, R. Kukafka, Z. Stavri, and H. Jamison. New York: Springer. Pp. 71-84. Lewis, M. A., I. Salas, A. de la Sota, N. Chiofalo, and B. Leake. 1990. Randomized trial of a program to enhance the competencies of children with epilepsy. Epilepsia 31(1):101-109. Lewis, M. A., C. L. Hatton, I. Salas, B. Leake, and N. Chiofalo. 1991. Impact of the children’s epilepsy program on parents. Epilepsia 32(3):365-374.
OCR for page 378
378 EPILEPSY ACROSS THE SPECTRUM Lewis, S., S. Higgins, and M. Goodwin. 2008. Informing patients about sudden unexpected death in epilepsy: A survey of specialist nurses. British Journal of Neuroscience Nursing 4(1):30-34. Lewis, S. A., J. Noyes, and S. Mackereth. 2010. Knowledge and information needs of young people with epilepsy and their parents: Mixed-method systematic review. BMC Pediatrics 10:103. Little, P., H. Everitt, I. Williamson, G. Warner, M. Moore, C. Gould, K. Ferrier, and S. Payne. 2001. Preferences of patients for patient centred approach to consultation in primary care: Observational study. BMJ 322(7284):468-472. Long, L., A. L. Reeves, J. L. Moore, J. Roach, and C. T. Pickering. 2000. An assessment of epilepsy patients’ knowledge of their disorder. Epilepsia 41(6):727-731. Lorig, K. R., and H. Holman. 2003. Self-management education: History, definition, out- comes, and mechanisms. Annals of Behavioral Medicine 26(1):1-7. Lorig, K. R., D. S. Sobel, A. L. Stewart, B. W. Brown, Jr., A. Bandura, P. Ritter, V. M. Gonzalez, D. D. Laurent, and H. R. Holman. 1999. Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: A randomized trial. Medical Care 37(1):5-14. Lorig, K., P. L. Ritter, and K. Plant. 2005. A disease-specific self-help program compared with a generalized chronic disease self-help program for arthritis patients. Arthritis and Rheumatism 53(6):950-957. Lorig, K. R., P. L. Ritter, D. D. Laurent, and K. Plant. 2006. Internet-based chronic disease self-management: A randomized trial. Medical Care 44(11):964-971. Lu, C., E. Wirrell, and M. Blackman. 2005. Where do families of children with epilepsy obtain their information? Journal of Child Neurology 20(11):905-910. Lv, R., L. Wu, L. Jin, Q. Lu, M. Wang, Y. Qu, and H. Liu. 2009. Depression, anxiety and quality of life in parents of children with epilepsy. Acta Neurologica Scandinavica 120(5):335-341. Marks, R., J. P. Allegrante, and K. Lorig. 2005. A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: Implications for health education practice (part II). Health Promotion Practice 6(2):148-156. Martin, R., L. Vogtle, F. Gilliam, and E. Faught. 2003. Health-related quality of life in senior adults with epilepsy: What we know from randomized clinical trials and suggestions for future research. Epilepsy and Behavior 4(6):626-634. ———. 2005. What are the concerns of older adults living with epilepsy? Epilepsy and Be- havior 7(2):297-300. Martlew, J., A. Baker Gus, L. Goodfellow, N. Bodde, and A. Aldenkamp. 2007. Behavioural treatments for non-epileptic attack disorder. Cochrane Database of Systematic Reviews 1:CD006370. Mattson, R. H., and B. E. Gidal. 2004. Fractures, epilepsy, and antiepileptic drugs. Epilepsy and Behavior 5(Suppl. 2):S36-S40. May, T. W., and M. Pfäfflin. 2002. The efficacy of an educational treatment program for patients with epilepsy (MOSES): Results of a controlled, randomized study. Modular Service Package Epilepsy. Epilepsia 43(5):539-549. McCloskey, J., and D. Flenniken. 2010. Overcoming cultural barriers to diabetes control: A qualitative study of southwestern New Mexico Hispanics. Journal of Cultural Diversity 17(3):110-115. McNelis, A., B. Musick, J. Austin, D. Dunn, and K. Creasy. 1998. Psychosocial care needs of children with new-onset seizures. Journal of Neuroscience Nursing 30(3):161-165. McNelis, A. M., J. Buelow, J. Myers, and E. A. Johnson. 2007. Concerns and needs of children with epilepsy and their parents. Clinical Nurse Specialist 21(4):195-202. Miller, L., and S. Rollnick. 2002. Motivational interviewing. 2nd ed. New York: Guilford Press.
OCR for page 379
379 EDUCATING PEOPLE WITH EPILEPSY AND THEIR FAMIILIES Mittan, R. J. 2009. Psychosocial treatment programs in epilepsy: A review. Epilepsy and Behavior 16(3):371-380. Modi, A. C., J. R. Rausch, and T. A. Glauser. 2011. Patterns of nonadherence to antiepileptic drug therapy in children with newly diagnosed epilepsy. JAMA 305(16):1669-1676. Mohanraj, R., J. Norrie, L. J. Stephen, K. Kelly, N. Hitiris, and M. J. Brodie. 2006. Mortality in adults with newly diagnosed and chronic epilepsy: A retrospective comparative study. Lancet Neurology 5(6):481-487. Morahan-Martin, J. M. 2004. How Internet users find, evaluate, and use online health infor- mation: A cross-cultural review. Cyberpsychology and Behavior 7(5):497-510. Morton, B., A. Richardson, and S. Duncan. 2006. Sudden unexpected death in epilepsy (SUDEP): Don’t ask, don’t tell? Journal of Neurology, Neurosurgery and Psychiatry 77(2):199-202. Mu, P. F. 2005. Paternal reactions to a child with epilepsy: Uncertainty, coping strategies, and depression. Journal of Advanced Nursing 49(4):367-376. ———. 2008. Transition experience of parents caring of children with epilepsy: A phenom- enological study. International Journal or Nursing Studies 45(4):543-551. Nakhutina, L., J. S. Gonzalez, S. A. Margolis, A. Spada, and A. Grant. 2011. Adherence to antiepileptic drugs and beliefs about medication among predominantly ethnic minority patients with epilepsy. Epilepsy and Behavior 22(3):584-586. NCBDE (National Certification Board for Diabetes Educators). 2012. National Certification Board for Diabetes Educators. http://www.ncbde.org/index.cfm (accessed February 22, 2012). Neligan, A., and S. D. Shorvon. 2010. Frequency and prognosis of convulsive status epilepticus of different causes: A systematic review. Archives of Neurology 67(8):931-940. Nolan, K. J., C. S. Camfield, and P. R. Camfield. 2006. Coping with Dravet syndrome: Parental experiences with a catastrophic epilepsy. Developmental Medicine and Child Neurology 48(9):761-765. ———. 2008. Coping with a child with Dravet syndrome: Insights from families. Journal of Child Neurology 23(6):690-694. Nunez, D. E., C. Keller, and C. D. Ananian. 2009. A review of the efficacy of the self- management model on health outcomes in community-residing older adults with arthri- tis. Worldviews on Evidence-Based Nursing 6(3):130-148. ODPHP (Office of Disease Prevention and Health Promotion). 2010. National action plan to improve health literacy. Washington, DC: U.S. Department of Health and Human Services. Oostrom, K. J., A. Schouten, C. L. Kruitwagen, A. C. Peters, and A. Jennekens-Schinkel. 2001. Parents’ perceptions of adversity introduced by upheaval and uncertainty at the onset of childhood epilepsy. Epilepsia 42(11):1452-1460. Pack, A. M., and M. J. Morrell. 2001. Adverse effects of antiepileptic drugs on bone structure: Epidemiology, mechanisms and therapeutic implications. CNS Drugs 15(8):633-642. Paschal, A. M., E. Ablah, R. Wetta-Hall, C. A. Molgaard, and K. Liow. 2005. Stigma and safe havens: A medical sociological perspective on African-American female epilepsy patients. Epilepsy and Behavior 7(1):106-115. Paschal, A. M., S. R. Hawley, T. St Romain, K. Liow, C. A. Molgaard, J. Sly, and T. L. Sadler. 2007. Epilepsy patients’ perceptions about stigma, education, and awareness: Prelimi- nary responses based on a community participatory approach. Epilepsy and Behavior 11(3):329-337. Pennell, P. B., and P. Thompson. 2009. Gender-specific psychosocial impact of living with epilepsy. Epilepsy and Behavior 15(Suppl. 1):S20-S25. Pfizer. 2012. The newest vital sign: A new health literacy assessment tool for health care pro- viders. http://www.pfizerhealthliteracy.com/public-policy-researchers/NewestVitalSign. aspx (accessed February 22, 2012).
OCR for page 380
380 EPILEPSY ACROSS THE SPECTRUM Pramuka, M., R. Hendrickson, and A. C. Van Cott. 2010. Survey results of Internet and com- puter usage in veterans with epilepsy. Epilepsy and Behavior 17(3):366-368. Prinjha, S., A. Chapple, A. Herxheimer, and A. McPherson. 2005. Many people with epilepsy want to know more: A qualitative study. Family Practice 22(4):435-441. Prochaska, J. O., and C. C. DiClemente. 1982. Transtheoretical therapy: Toward a more inte- grative model of change. Psychotherapy: Theory, Research and Practice 19(3):276-288. Rajasundaram, R., S. Phillips, and N. R. Clay. 2006. Information leaflet used in out-patient clinics: A survey of attitude and understanding of the user. International Journal of Health Care Quality Assurance Incorporating Leadership in Health Services 19(6-7):575-579. Rau, J., T. W. May, M. Pfäfflin, D. Heubrock, and F. Petermann. 2006. [Education of children with epilepsy and their parents by the modular education program epilepsy for families (FAMOSES)—Results of an evaluation study]. Rehabilitation (Stuttgart) 45(1):27-39. Ried, S., U. Specht, R. Thorbecke, K. Goecke, and R. Wohlfarth. 2001. MOSES: An edu- cational program for patients with epilepsy and their relatives. Epilepsia 42(Suppl. 3):76-80. Rodenburg, R., A. M. Meijer, M. Dekovic, and A. P. Aldenkamp. 2005. Family factors and psychopathology in children with epilepsy: A literature review. Epilepsy and Behavior 6(4):488-503. Rowan, A. J. 2000. Epilepsy and the elderly. Epilepsy and Behavior 1(1):S12-S14. Safeer, R. S., and J. Keenan. 2005. Health literacy: The gap between physicians and patients. American Family Physician 72(3):463-468. Sample, P. L., P. L. Ferguson, J. L. Wagner, E. Elisabeth Pickelsimer, and A. W. Selassie. 2006. Experiences of persons with epilepsy and their families as they look for medical and community care: A focus group study from South Carolina. Epilepsy and Behavior 9(4):649-662. Sare, G., M. Rawnsley, A. Stoneman, and S. Duncan. 2007. Men with epilepsy—The lost tribe? Results of a nationwide survey of men with epilepsy living in the UK. Seizure 16(5):384-396. Shafer, P. O. 1998. Counseling women with epilepsy. Epilepsia 39(Suppl. 8):S38-S44. ———. 2009. Epilepsy self-management in clinical practice: What we do and know. Paper read at AES Annual Meeting, Boston, MA: Hynes Conference Center. Shafer, P. O., and C. DiIorio. 2004. Managing life issues in epilepsy. Continuum: Lifelong Learning in Neurology—Epilepsy 10(4):138-156. ———. 2006. Part one: Self-management in epilepsy care: Putting teen and families in the center. EP Magazine June:46-48, http://www.epilepsy.com/pdfs/Except_parents_art1.pdf (accessed January 5, 2011). Shope, J. T. 1980. Intervention to improve compliance with pediatric anticonvulsant therapy. Patient Counselling and Health Education 2(3):135-141. Shore, C. P., S. M. Perkins, and J. K. Austin. 2008. The Seizures and Epilepsy Education (SEE) program for families of children with epilepsy: A preliminary study. Epilepsy and Behavior 12(1):157-164. Shore, C. P., J. M. Buelow, J. K. Austin, and C. S. Johnson. 2009. Continuing psychosocial care needs in children with new-onset epilepsy and their parents. Journal of Neuroscience Nursing 41(5):244-250. Shorvon, S., and T. Tomson. 2011. Sudden unexpected death in epilepsy. Lancet 378(9808):2028-2038. Sirven, J. I., R. A. Lopez, B. Vazquez, and P. Van Haverbeke. 2005. Qué es la epilepsia? Attitudes and knowledge of epilepsy by Spanish-speaking adults in the United States. Epilepsy and Behavior 7(2):259-265.
OCR for page 381
381 EDUCATING PEOPLE WITH EPILEPSY AND THEIR FAMIILIES So, E. L., J. Bainbridge, J. R. Buchhalter, J. Donalty, E. J. Donner, A. Finucane, N. M. Graves, L. J. Hirsch, G. D. Montouris, N. R. Temkin, S. Wiebe, and T. L. Sierzant. 2009. Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sud- den Unexplained Death in Epilepsy. Epilepsia 50(4):917-922. Swarztrauber, K. 2004. Barriers to the management of patients with surgically remediable intractable epilepsy. CNS Spectrums 9(2):146-152. Tieffenberg, J. A., E. I. Wood, A. Alonso, M. S. Tossutti, and M. F. Vicente. 2000. A random- ized field trial of ACINDES: A child-centered training model for children with chronic illnesses (asthma and epilepsy). Journal of Urban Health 77(2):280-297. Tinetti, M. E., and C. S. Williams. 1997. Falls, injuries due to falls, and the risk of admission to a nursing home. New England Journal of Medicine 337(18):1279-1284. Wagner, E. H., S. M. Bennett, B. T. Austin, S. M. Greene, J. K. Schaefer, and M. Vonkorff. 2005. Finding common ground: Patient-centeredness and evidence-based chronic illness care. Journal of Alternative and Complementary Medicine 11(Suppl. 1):S7-S15. Wagner, J. L., and G. Smith. 2006. Psychosocial intervention in pediatric epilepsy: A critique of the literature. Epilepsy and Behavior 8(1):39-49. Wagner, J. L., P. L. Sample, P. L. Ferguson, E. E. Pickelsimer, G. M. Smith, and A. W. Selassie. 2009. Impact of pediatric epilepsy: Voices from a focus group and implications for public policy change. Epilepsy and Behavior 16(1):161-165. Wagner, J. L., G. Smith, P. Ferguson, K. van Bakergem, and S. Hrisko. 2010. Pilot study of an integrated cognitive-behavioral and self-management intervention for youth with epilepsy and caregivers: Coping Openly and Personally with Epilepsy (COPE). Epilepsy and Behavior 18(3):280-285. Wicks, P., D. L. Keininger, M. P. Massagli, C. D. la Loge, C. Brownstein, J. Isojarvi, and J. Heywood. 2012. Perceived benefits of sharing health data between people with epilepsy on an online platform. Epilepsy and Behavior 23(1):16-23. Wood, L. J., E. M. Sherman, L. D. Hamiwka, M. A. Blackman, and E. C. Wirrell. 2008. Maternal depression: The cost of caring for a child with intractable epilepsy. Pediatric Neurology 39(6):418-422. Wu, K. N., E. Lieber, P. Siddarth, K. Smith, R. Sankar, and R. Caplan. 2008. Dealing with epilepsy: Parents speak up. Epilepsy and Behavior 13(1):131-138.
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