Epilepsy Across the Spectrum Promoting Health and Understanding (2012) / Chapter Skim
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6 Quality of Life and Community Resources
6 Quality of Life and Community Resources
Pages 269-326
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From page 269... ...
Improvements in community services and programs are needed to ensure that they are individually centered to meet the needs of the person with epilepsy; locally focused, taking into account the full range of resources in the area; easily accessible; thoroughly evaluated; closely linked to health care providers, particularly epileptologists and epilepsy centers; and innovative and collaborative. Actions necessary to achieve these goals include identifying and disseminating best practices in the provision of epilepsy services and innovative collaborations with organizations and agencies focused on other neurological and chronic conditions or on similar service needs.
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From page 270... ...
The chapter begins with an overview of quality of life and the facets of quality of life that are particularly relevant for differing age groups. The major areas of focus for community services are then discussed -- families, day care and school, sports and recreation, employment, transportation, housing, and first aid training -- with each section providing the committee's thoughts on next steps and opportunities to be explored.
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From page 271... ...
• Federal and state websites and information resources • Health care providers, including community health workers • Case managers and social workers • State and local Epilepsy Foundation affiliatesa Information needs about local • Nonprofit organizations community services • Social workers, case managers Help in coping with the disorder • Support groups and the associated comorbidities • Self-management programs and challenges • Counseling School-related needs • Cognitive testing and educational assistance • Individualized education programs (IEPs) • Teachers and school counselors who are informed about epilepsy Employment-related needs • Vocational programs, vocational rehabilitation programs • Disability-related organizations and government agencies Transportation-related needs • Social service organizations • Local transportation agencies • Government agencies Housing-related needs • Social service organizations • Nonprofit organizations, including faith-based organizations • Government agencies Recreation and leisure • Camps • Sports and recreational programs Assistance for family members • Respite care programs and caregivers • Support groups for family members NOTE: As indicated throughout the report, family members, friends, caregivers, and others are key providers of social and psychosocial support.
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From page 272... ...
. Children and Adolescents In general, research comparing quality of life across different chronic conditions indicates that children and adolescents with epilepsy have a relatively high physical quality of life, but fare much worse in the psychological and social quality-of-life domains.
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From page 273... ...
$3,000 The amount I've paid to an advocate to secure services for Max at his current high school because of the ignorance of the school district regarding epilepsy and students with medical disabilities 19 Anti-seizure pills Max has taken per day 10 Medical and service providers that make up Max's support team 9 Anti-seizure medications he's tried 6:30 Pill-time -- morning and night -- it's set as an alarm on everyone's cell phone in the house 5 Number of caring and gifted teachers that have come to the house to teach math, English, and science in the last 3 years 4 Number of neurologists he sees regularly 3 Number of times Max has received the Anointing of the Sick 2 Number of additional diagnoses: ADD at age 7 and anxiety at age 10 due to the seizures 1 Years of home schooling while we tried to find a working combination of medications to control the seizures 0 Number of times he has said, "Why me" 0 Number of friends he has now Countless • ours waiting in line at the pharmacy, driving to doctors' appointments, H and documenting his seizure activity • ays missed from school due to seizures D • nsulting and rude remarks made by classmates (ignorant and informed) I because of his twitching, mumbling, seizing, and falling asleep in class • eetings, e-mails, and phone calls to his teachers and school support M personnel to explain what to expect with his medical condition • ays missed from my work to take him to doctors appointments, have D meetings at school, and just be there for him • inutes where my daughter and I watch Max slip away into another place M while his brain seizes • rayers from family and friends, coworkers, and neighbors P NOTE: ADD = attention deficit disorder.
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From page 274... ...
. Children with epilepsy and intellectual disability have high rates of mental health conditions; in one study, more than 90 percent of children with epilepsy and intellectual disability could be classified as having a psychiatric diagnosis also (Steffenburg et al., 1996)
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From page 275... ...
and other mental health conditions are risk factors for developing seizures in children (Hesdorffer et al., 2004; McAfee et al., 2007) (Chapter 3)
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From page 276... ...
aSelf-reported measure of health-related quality of life (Behavioral Risk Factor Surveillance System data)
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From page 277... ...
A study of three adult groups (young, middleaged, and older) with epilepsy found that young and middle-aged adults had higher physical functioning and poorer psychological functioning than
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From page 278... ...
Episodic chronic health conditions are considered among the most stressful for families, because even during periods of no symptoms, the family remains on alert in anticipation of problems (Rolland, 1994)
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From page 279... ...
The next section reviews what is known about the impact of epilepsy on the quality of life of the family, followed by how these negative effects can be reduced by improving programs and services. Three broad areas are discussed: emotional health, family social and leisure activities, and employment and role expectations.
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From page 280... ...
. Impact on Family Social and Leisure Activities Family social and leisure activities are often restricted because of epilepsy (Ellis et al., 2000; Taylor et al., 2011a)
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From page 281... ...
However, family members may be unaware of available community services. Health care providers should routinely provide information about community resources and support services to all families, and state and local Epilepsy Foundation affiliates and other epilepsy-specific organizations should be an integral part of discussions with individuals with new-onset epilepsy and their families to help direct them to needed community services.
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From page 282... ...
Seeking respite care is an important strategy, particularly for families of individuals with uncontrolled seizures or serious comorbidities. These families also could benefit from the availability of respite and day care services (Thompson and Upton, 1992)
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From page 283... ...
. Although little is known about the extent to which day care providers are aware of epilepsy and the range of types of epilepsy that could affect young children, there are concerns that some child care providers may refuse to accept a child with epilepsy based on their misconceptions about the disorder and about the amount of attention a child with epilepsy may need (Epilepsy Foundation, 2010)
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From page 284... ...
. As parents take on the role of advocate they can be supported by state and local Epilepsy Foundation affiliates and other nonprofit organizations through parent support groups; these organizations can provide written materials on epilepsy that parents can supply to their day care providers and other supporting efforts.
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From page 285... ...
The high prevalence of cognitive deficits consistently found in children with epilepsy, along with the negative impact of those deficits on academic achievement, make it imperative that children with epilepsy be screened early for cognitive problems and that early interventions be developed and applied (Fastenau et al., 2009)
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From page 286... ...
Results and recommendations from these tests are used in developing IEPs and other educational plans and are also important in helping adolescents and young adults identify independent living needs and skills and assist in planning their future. Unfortunately, currently there is no quick psychometric screen for assessing cognitive functioning for epilepsy, and research is needed that would enable the development of a tool to help identify children at risk for academic achievement problems.
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From page 287... ...
The Epilepsy Foundation has developed programs and resources to educate teachers and to help them increase epilepsy awareness in their classrooms. For example, the website-based program, Epilepsy Classroom, developed by UCB, Inc., in collaboration with the Epilepsy Foundation, provides lesson plans, classroom resources, and parent resources on a range of topics relevant to children with epilepsy in the school setting (Epilepsy Classroom, 2012)
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From page 288... ...
An IEP is a multipart written statement for the child with a disability that includes information on annual academic and functional goals, plans on how progress will be measured on those goals, details on the special education and related services to be provided to the child, and information on any appropriate individual accommodations necessary to measure the academic achievement and functional performance of the child on state- and district-wide assessments (U.S. Department of Education, 2011b)
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From page 289... ...
Parents and school staff can encourage students with epilepsy to reach out to peers and teachers for help with accommodations as needed and help students become strong and informed self-advocates. SPORTS AND RECREATION Physical activity and recreation are important components of physical and emotional well-being and quality of life for all people, and people with epilepsy are encouraged to be as physically active as possible (Epilepsy Foundation, n.d.; Howard et al., 2004)
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From page 290... ...
. In a study comparing siblings with and without epilepsy, no significant differences were seen for physical activity in children under 12 years, but youth ages 13 to 17 years participated less frequently in group sports and total sports activities, although participation in individual sports was similar (Wong and Wirrell, 2006)
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From page 291... ...
. Many nonprofit organizations, including state and local Epilepsy Foundation affiliates, offer information on and opportunities for summer camps and other recreational activities (Epilepsy Foundation, 2011; Epilepsy.com, 2011)
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From page 292... ...
Nonprofit organizations and the public health community can disseminate information tailored to meet this need. Individuals, parents, and caregivers should be sure that those with whom they work and who coach children and youth with epilepsy are fully aware of any specific limitations.
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From page 293... ...
. Although estimates of the extent of employment disparities vary based on methodology and sample characteristics, relatively lower levels of employment have been consistently found for people with 3 In both studies analyzing the BRFSS results, active epilepsy was defined as having 1 or more seizures in the past 3 months or taking medication for seizure control, and lifetime prevalence of epilepsy was defined as responding affirmatively to ever being told by a physician that they had a seizure disorder or epilepsy (Kobau et al., 2008; Konda et al., 2009)
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From page 294... ...
In a survey of state and local Epilepsy Foundation affiliates, none of the organizations reported that they counsel people to be open about their condition either on applications or in initial interviews, and more than half of respondents indicated that if an open discussion about the condition is necessary, they would advise that it be done after being hired (Bishop and Allen, 2001)
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From page 295... ...
. In surveys of employers, those from large companies were more likely to have positive attitudes about workers with disabilities; to hire more workers with disabilities, including workers with epilepsy (Jacoby et al., 2005)
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From page 296... ...
. Potential avenues for improving employment opportunities for people with epilepsy include employer education programs and awareness campaigns, vocational rehabilitation programs and career services, and enforcement of antidiscrimination and equal opportunity legislation.
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, and employment-related services offered by state and local Epilepsy Foundation affiliates across the country (Fraser, 2011)
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From page 298... ...
found positive employer attitudes toward employees with chronic health conditions, including epilepsy. However, epilepsy was noted as one of the conditions with which employers were least familiar (Jacoby et al., 2005)
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From page 299... ...
, the Epilepsy Foundation, and Epilepsy.com of the Epilepsy Therapy Project have developed and actively promote programs and educational materials that detail the provisions of the ADA and its amendments, as well as provide information and resources relevant to employment, such as job accommodations. The extent to which these resources are accessed by employers and whether they have increased employers' willingness to hire people with epilepsy needs to be explored.
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From page 300... ...
Any or all of these could be impaired by epilepsy and seizures, comorbidities associated with epilepsy, or side effects of seizure medications. People with epilepsy who drive vehicles may present safety concerns for themselves, their passengers, and the public (Drazkowski, 2007a,b; Drazkowski and Sirven, 2011)
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From page 301... ...
In 1994, the American Academy of Neurology (AAN) , AES, and Epilepsy Foundation developed a consensus statement that recommends a 3-month interval (AAN et al., 1994)
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From page 302... ...
. In the consensus statement noted above, the three organizations agreed that physicians should not be required to report people with epilepsy to state driving authorities (AAN et al., 1994)
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From page 303... ...
. Physician knowledge of state driving laws varies by specialty; more than a third of family physicians and internists incorrectly identified whether their state required mandatory reporting, compared with approximately 19 percent of neurologists (Vogtle et al., 2007)
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From page 304... ...
as alternatives to driving • ocument the discussion and advice in the patient's health record D • hen possible, provide written information on driving and advice to the W patient • evisit the topic of driving with the patient in subsequent visits R SOURCES: Drazkowski, 2007a,b; Elliott and Long, 2008; Webster et al., 2011. formance measure is adopted, implemented, and specific enough to include mention of driving restrictions, the potential impact could be significant if it were followed consistently: clinicians would be more likely to learn the state laws and restrictions in order to counsel their patients, the rates and regularity of patient counseling would increase significantly, patient awareness about safety issues could increase, and the topic would be revisited on an annual basis and messages about safety would be reinforced.
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From page 305... ...
Connections have been made between social support and access to transportation. For example, a survey of African American women with epilepsy indicated that those individuals with a strong social network were more likely to have access to needed transportation (Paschal et al., 2005)
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From page 306... ...
This is another area where the committee believes collaborative efforts of epilepsy organizations with disability organizations and other disease-specific organizations could be advantageous. Innovative housing models, including those that focus on older adults with disabilities, need to be explored and championed by nonprofit organizations, public–private collaborations, and government agencies.
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From page 307... ...
Community-based programs may be epilepsy-specific or they may address needs of people with a range of health conditions. For example, many epilepsy-specific programs at the community level are affiliated with the Epilepsy Foundation.
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From page 308... ...
Both professionals and lay volunteers can bridge the gaps between people with epilepsy and community services, as well as provide links and referrals to other services. Rehabilitation counselors frequently work with adults who have epilepsy in vocational rehabilitation programs or they may be employed by hospitals and schools to help people with psychosocial adjustment and coping, as well as educational and vocational planning and services.
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From page 309... ...
POTENTIAL MODERATING FACTORS Individual Resources • Resilience • Coping skills EPILEPSY AND OUTCOMES Employment/Financial Resources COMORBIDITIES Emotional and Social Support Family Environment Characteristics of Epilepsy • Seizure severity and frequency • Adverse effects of treatment Quality of Life • Physical Severity of Comorbidities • Psychological • Mental health • Social • Cognitive Community Resources and Services • Somatic • Psychological counseling • Educational assistance at school • Cognitive rehabilitation • Vocational counseling and employment programs • Respite care • Support for chronic care self-management • Support for independent living • Epilepsy organizations • Support groups • Recreational programs and camps FIGURE 6-2 Factors integral to quality of life for people with epilepsy.
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From page 310... ...
Clarifying Eligibility While services provided by Epilepsy Foundation affiliates and other epilepsy-specific organizations are open to any person with epilepsy or seizures, eligibility for other programs may be related to level of disability (e.g., Social Security Disability Insurance, Medicare, special education) , income (e.g., Medicaid and other financial assistance programs)
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From page 311... ...
The ability of community services agencies of all types to sustain their activities over time and meet the needs of their constituencies must be strengthened through innovative partnerships. Epilepsy organizations are well poised to build relationships and forge advocacy partnerships with organizations whose missions are to help people with other chronic diseases, especially other neurological disorders and health conditions that are frequently comorbid with epilepsy.
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From page 312... ...
People with epilepsy, their family members, and their caregivers can often be the first and most insightful source of information regarding epilepsy and can inform teachers, employers, colleagues, friends, and extended fam ily as well as work to promote improved community services.
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From page 313... ...
Family and community support are critical across a range of services. As a result, the committee urges improvements in community services and programs to ensure that they are • individually centered to meet the needs of the person with epilepsy; • locally focused, taking into account the full range of resources in the area; • easily accessible; • thoroughly evaluated; • closely linked to health care providers, particularly epileptologists and epilepsy centers; and • innovative and collaborative in working with organizations and agencies focused on other neurological and chronic conditions or on similar service needs.
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From page 314... ...
Innovative and financially attentive approaches to community services -- such as a 24-hour nonmedical help line for people with epilepsy and their families or ensuring the availability of local transportation -- can build on and contribute to efforts by organizations and programs for other chronic health conditions. A strength of the epilepsy community is the depth and number of epilepsy organizations and involved individuals; building on and coordinating their work is critical to further improvements in quality of life for people with epilepsy.
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From page 315... ...
2001. Employment concerns of people with epilepsy and the ques tion of disclosure: Report of a survey of the Epilepsy Foundation.
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From page 316... ...
2009. Occupational outlook handbook, 2010-11 edition: Child care workers.
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From page 317... ...
Developmental Medicine and Child Neurology 45(5)
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. Epilepsy Foundation Northwest.
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Landover, MD: Epilepsy Foundation of America. Hawley, S
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1999. Risk factors for seizure related motor vehicle crashes in patients with epilepsy.
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From page 321... ...
I: Social outcome and childhood factors. Developmental Medicine and Child Neurology 21(3)
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Journal of Vocational Rehabilitation 23:11-20. NACCRRA (National Association of Child Care Resource and Referral Agencies)
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Developmental Medicine and Child Neurology 44(12)
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From page 324... ...
Sec. 300.320 definition of individualized education program.
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From page 325... ...
2009. Living environment of persons with severe epilepsy and intellectual disability: A prospective study.
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