Epilepsy Across the Spectrum Promoting Health and Understanding (2012) / Chapter Skim
Currently Skimming:
7 Educating People with Epilepsy and Their Families
7 Educating People with Epilepsy and Their Families
Pages 327-382
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From page 327... ...
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.
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From page 328... ...
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.
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From page 329... ...
Moreover, having accurate, in-depth information about epilepsy helps people better understand the disorder, prevents misconceptions, and reduces concerns about stigma. Finally, epilepsy education helps promote optimal well-being and quality of life.
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From page 330... ...
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)
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From page 331... ...
It is especially 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)
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From page 332... ...
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 mortality risks (Prinjha et al., 2005)
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From page 333... ...
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)
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From page 334... ...
. 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)
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education, career, and employment decisions; (2) living a healthy lifestyle, including managing stress and getting sufficient sleep; (3)
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From page 336... ...
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.
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From page 337... ...
, 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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From page 338... ...
. In addition to seizures, contributing risk factors for falls include female gender, polytherapy, side effects of seizure medications (including dizziness or ataxia)
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From page 339... ...
, communicating with health professionals, interacting with school personnel, and finding support in the community (Buelow et al., 2006; Wagner et al., 2009)
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From page 340... ...
Some caregivers reported that they felt that health care providers did not care about their information needs (Kendall et al., 2004)
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From page 341... ...
WHERE, WHEN, AND HOW PEOPLE WITH EPILEPSY AND THEIR FAMILIES RECEIVE INFORMATION Traditionally, people with epilepsy and their families received information and education about the disorder one-on-one from health care providers. Although many people still prefer to receive health education in this manner (Fraser et al., 2011; Kendall et al., 2004)
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From page 342... ...
In fact, many providers recommend that patients and families seek information from outside sources to complement their own educational efforts. It is important that health professionals who educate patients and their families in a clinical setting understand the specific information needs and preferences of patients and their families and take into consideration factors related to health literacy and culture, including cultural differences that may exist between them and their patients (Chapter 5)
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From page 343... ...
. The timing of epilepsy education for young people depends on the youth's ability to understand it and interest in receiving it.
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From page 344... ...
People vary as to their preferred format for receiving information. For example, in a study of family caregivers of adults with epilepsy in EXAMPLES OF CRITICAL JUNCTURES FOR PATIENT Box 7-5 AND FAMILY EDUCATION • At diagnosis • During first year • When there is a change or new concerns develop Developmental status (beginning school, transitioning from pediatric to adult care, transitioning from adulthood to older adulthood, living independently)
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From page 345... ...
At that time, the authors noted the trend within the American Academy of Pediatrics and the public health community to create more low-literacy materials. Recent reviews of both print and online epilepsy educational materials indicate the problem
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From page 346... ...
. The National Action Plan to Improve Health Literacy recommends that developers of health educational content of any type (e.g., web, audio, video, print)
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However, the extent of a patient's health literacy is difficult to assess, and physicians have to be aware of and recognize the effects that low health literacy can have on patients' ability to understand health information related to their diagnosis and treatment (e.g., specific syndrome, seizure type and triggers)
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From page 348... ...
Role of the Internet in Educating People with Epilepsy and Their Families As Internet use becomes more widespread, it is an increasingly promising vehicle for delivering health education to people with epilepsy and their families, as well as general information about epilepsy to the public (Chapter 8)
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, information on living with epilepsy for individuals and families across the life span, strategies for communicating with health professionals, answers to frequently asked questions, and opportunities for e-community programs. The Epilepsy Foundation has developed parts of its website to reach culturally
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The Internet has an especially important role for families coping with the more severe epilepsy syndromes. For example, Dravet.org (formerly the International Dravet Syndrome Epilepsy Action [IDEA]
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From page 351... ...
Although individuals and families may be trying to find and use health information online, the sites are not often geared to people with low health literacy. Content assessments of the basic consumer education por
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From page 352... ...
In the long run, with additional focus on health literacy, comprehensive content testing with users, and optimization of content based on user feedback, online epilepsy educational resources could be important tools for all individuals and their families, including those with low health literacy. Online resources allow users to proceed at their own pace, and the technology enables written, visual, audio, and video learning experiences (Lewis, 2005)
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From page 353... ...
However, the committee questions the feasibility of this recommendation given the very short clinical encounters and lack of reimbursement for patient education. The committee found limited research that would guide health professionals in making recommendations about specific Internet sites to patients and families.
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The lack of studies on racial/ethnic minorities' preferences related to the delivery of epilepsy education suggests that research within these populations is especially needed to ensure that efforts are sensitive to potential cultural differences. Research is needed on the level of Internet access among different subpopulations of people with epilepsy (older adults, racial/ethnic minorities)
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From page 355... ...
The broad definition of self-management for chronic health conditions used by Lorig and Holman (2003) includes reference to both tasks and skills that can be introduced through education.
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From page 356... ...
. Some models have been expanded to include skills and knowledge in the following areas: information management, general health status, self-advocacy, development of productive patient-provider partnerships, individuals' ability to manage their lives within the context of having a chronic health condition, and competence and autonomy derived from self-determination theory10 (Buelow and Johnson, 2000; Clark et al., 2010; DiIorio et al., 2004; Shafer, 1998, 2009; Shafer and DiIorio, 2004, 2006)
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From page 357... ...
Development and Evaluation of Epilepsy Education Programs The committee explored the literature on the development and evaluation of epilepsy education programs aimed at improving at least one aspect of knowledge, self-management, coping, or quality of life in either patients or their families and found that the research base lags behind that for other chronic conditions, such as arthritis (Nunez et al., 2009)
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From page 358... ...
. Although many education programs focused solely on epilepsy, others were geared toward families of children with epilepsy and cognitive comorbidities; Buelow
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From page 359... ...
Epilepsy education programming for children and families has not been as thoroughly evaluated in the United States as in some other countries. Of four educational programs tested using randomized controlled trials (often referred to as the gold standard of research methodology)
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One of the earliest adult programs, the Seizures and Epilepsy Education
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J Mittan and formerly known as the Sepulveda Epilepsy Education pro gram.
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. In a study of the program's effects, patients newly diagnosed with seizure-like events with a psychological basis were given an informational leaflet with 14 points covering patients' representations of their health condition.
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. This concept is an important consideration for the development and evaluation of epilepsy education programs.
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For example, one diabetes education program designed to respond to cultural barriers to diabetes self-management successfully managed cultural barriers, increased participants' self-efficacy,13 and promoted engagement in healthier lifestyles (McCloskey and Flenniken, 2010)
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Outcomes such as these are clearly relevant to epilepsy education. An international literature review of studies evaluating outcomes of DSME was carried out to explore theoretical foundations, outcomes, and the use of community partnerships (Jack, 2003)
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From page 366... ...
The first was a review of the literature on programs for chronic health conditions to identify components taught across conditions. The authors identified 12 of these components, including symptom monitoring and response, strategies for handling emergencies, maintaining a healthy lifestyle, and managing emotional responses to the health condition.
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Attending these programs might also reduce feelings of social isolation. The finding that people in the condition-specific program demonstrated both earlier and greater improvement than people in the generic program suggests epilepsy-specific selfmanagement programs cannot be replaced with generic chronic health conditions education programs.
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suggests that online programs, both epilepsy-specific and generic for chronic conditions, could provide benefits for people with epilepsy who otherwise would not have access to them. Optimal Educational Outcomes for People with Epilepsy and Their Families The committee's vision for optimal patient and family education and outcomes is depicted in Figure 7-3.
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From page 369... ...
S EIZURE FREQUENCY AND SELF-MANAGEMENT COMMUNITY RESOURCES COMORBIDITY SEVERITY EDUCATION AND SERVICES • Epilepsy specific • Epilepsy information Uncompromised • No seizures self-management • Support as needed • No comorbidities • Information about resources • Epilepsy specific • Epilepsy information Mildly Compromised • Occasional seizures self-management • Support groups and/or • Referral and resources • Mild comorbidities for comorbidities EPILEPSY Moderately Compromised • Epilepsy specific • Epilepsy information • Persistent seizures self-management • Support groups and/or • Chronic care • Referral and resources • Moderate comorbidities self-management for comorbidities • Independent living support Severely Compromised • Respite services • Uncontrolled seizures • Support from relevant and/or organizations • Severe comorbidities FIGURE 7-2 Linking seizure frequency and comorbidity severity to self-management education and community resources and services.
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OPTIMAL PATIENT AND FAMILY EDUCATION O PTIMAL PATIENT AND FAMILY OUTCOMES 370 Self- Self- Resource Psychosocial Patient-Centered Knowledge Management Determination Access and Use Adjustment Outcomes INDICATOR AREAS Epilepsy Tasks and skills Self-e cacy Support groups Well-being Epilepsy management Treatment Epilepsy specific Empowerment Educational Quality of life goals • Seizures services Safety risks Advocacy skills Coping with • Treatment Self-management Vocational stigma • Safety goals Mortality risks Coping skills services • Comorbid Personal goals Healthy lifestyles Confidence in conditions Comorbidity self-management services Comorbidities Chronic care Participation in management Independent Social issues goal setting and • Healthy lifestyles living services decision making Emotional • Partnership Respite care response with providers • Independent Participation Available living skills in relevant resources organizations FIGURE 7-3 Education for people with epilepsy and their families to promote optimal outcomes. SOURCE: Adapted from Colagiuri and Eigenmann, 2009.
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From page 371... ...
In addition to these gaps in research, this chapter highlights several important points about education for people with epilepsy and their families: • Education for people with epilepsy and their families is critical around the time of diagnosis; through the first year; whenever there is a change in the person's condition, developmental status, or health status; and if new concerns or comorbidities develop. Few studies identify the most effective formats and delivery mechanisms for patient and family education, and evidence on educational pref erences is lacking, especially across diverse populations.
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From page 372... ...
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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From page 373... ...
2006. An evaluation of the quality of epilepsy education on the Canadian world wide web.
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From page 374... ...
. CDC, AES (American Epilepsy Society)
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From page 375... ...
2007. A health literacy assessment of the national Epilepsy Foundation web site.
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1990. Sepulveda Epilepsy Education: The efficacy of a psychoeducational treatment program in treating medical and psychosocial aspects of epilepsy.
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2007. Practice and research -- The PEPE project -- Katrina Kushinga describes how a German epilepsy education programme was adapted with the help of service users.
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1999. Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: A randomized trial.
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2006. Sudden unexpected death in epilepsy (SUDEP)
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2008. The Seizures and Epilepsy Education (SEE)
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2009. Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sud den Unexplained Death in Epilepsy.
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