Family life does not come to a stop because your child has been diagnosed with epilepsy. However, you can still do most things that your family enjoyed doing before the seizures. The fact that your child has seizures may require you to do more planning for some of these activities. Talk with your neurologist to help identify a way to make the activity safe. For example, if you enjoy wilderness camping and your child experiences prolonged seizures, you may want to talk with your neurologist about medication that you can take with you to treat these seizures. You may want to invest in a cell phone and make sure that your camping remains in areas where you can use the phone to get medical assistance if it became necessary.
You might want to camp in a park near an urban area rather than in a wilderness preserve, a compromise that allows you to enjoy nature while still being near medical care. Seizures themselves are seldom a threat to family activities, but the financial expenses related to the treatment of epilepsy may limit the amount of money that is left for family activities. If this happens, view it as an opportunity to try new things.
You can do many inexpensive things as a family. Create adventures. A picnic in the park can be a treat to a child who has not done that before. A nature hike around the neighborhood can turn a regular walk into a special learning adventure. Create new family traditions. Many families rediscovered the joy of reading with their children each night while sharing the Harry Potter series. Children love to help in the kitchen, and an afternoon together making cookies may be as much of a treat to them as a trip to the movies. Children value some individual time with Mom or Dad every bit as much as they value material possessions.
For most families, being organized is the key to balancing these needs. When you have a child with epilepsy, you have a few more things to fit into that balance. When learning problems accompany epilepsy, helping your child complete homework may leave less time for other family members. Tell your neurologist what your child enjoys and ask if she can continue these activities. In determining the appropriateness of activities for your child, you and your neurologist must consider the specific characteristics of your child, characteristics of her seizure disorder, and characteristics of the activity.
In considering the characteristics of your child, think about things that would be considered by any parent in selecting activities for a child. Age is an important variable.
With increasing age, children develop the physical skills balance and coordination and cognitive skills attention, memory, imagination, judgment that allow for successful participation in activities. If your child has physical limitations or is developing cognitive skills at a slower pace than other children, activities appropriate for most children of the same chronologic age may not be a good choice. Some restrictions are related to seizure type. If seizures result in a loss of consciousness, you would not want your child to go hang gliding, scuba diving, rock climbing, or dangle from the top of the monkey bars.
Seizures that affect control in an arm and hand, even if your child remains conscious, would also make these activities dangerous. However, it is important to consider the time of day when seizures occur in making decisions about these activities, some of which may be acceptable for children whose seizures only occur during sleep or at the time of awakening.
Some restrictions are related to activities that trigger seizures. Children whose seizures are sensitive to light patterns may not be able to play some or all video games. Children whose seizures are triggered by physical exertion may not be able to go out for track, but may be able to play golf. Some restrictions make good sense for everyone. No one should swim alone. Everyone is safer swimming in a pool than in a lake or ocean.
Everyone should wear a helmet when riding a bike, using roller blades, or riding a skateboard. If you have a teenager, one limit is defined by law: Your teenager will not be allowed to drive if he has seizures. Appendix B summarizes driving regulations by state. Most children with seizures can still participate in sports, enjoy time with friends, and do the things that everyone else their age does. Your child can have chores and be expected to help out around the house. Your child can go to school and learn. Unfortunately, epilepsy continues to be misunderstood.
Myths are stories that have no basis in fact, misconceptions are ideas accepted as fact, and stereotypes are information that may be true for a limited number of people in a group, but that are not true of everyone. Myths, misconceptions, and stereotypes regarding epilepsy are common.
How someone reacts to the information that your child has epilepsy will be related to the accuracy of the information that person has about epilepsy. Your job is to provide accurate information. First, you need to get accurate information yourself. Your neurologist may have pamphlets to get you started, and the Epilepsy Foundation has pamphlets that you can share.
Second, you need to be a good role model. If you continue to treat your child as a capable, responsible person, others will follow your lead and view your child in the same light. This question is addressed in more detail in the age-specific chapters that follow. First, you need to tell your family, including extended family members siblings, grandparents, aunts, uncles, cousins.
Trying to keep epilepsy a secret within the family is like trying to ignore an elephant in the living room—it can be done, but it is a lot of work. By trying to keep it a secret, it tells your child that he has a disease that is so horrible that no one can talk about it. Telling family members is a good place to practice what you are going to say to others. It will help you find out what questions are likely to be asked and allow you to get more information before you take on people outside the family. Second, you need to tell any adult who may be responsible for your child if she has a seizure.
You want them to know what to do—and what not to do—for your child during and after a seizure. Third, you may need to help your child tell his friends in an age appropriate fashion. If a medical emergency should occur, the treating physician needs this information. Some families choose to have their child wear a medic alert bracelet to address this need.
A handicap is defined as something that hinders a person, placing him at a disadvantage. Having epilepsy does not make your child handicapped. Research by Dr. Joan Austin and her associates have looked at the effect of a diagnosis of epilepsy on self-esteem, by comparing children with epilepsy to children with asthma. The incidence of depression and behavior problems was higher in the group of children with epilepsy than in the asthma group.
This does not have to happen. You can help your child develop and maintain positive self-esteem and age-appropriate behavior. You can make sure that your child remains an active, important member of your family. It is important to recognize that the diagnosis of epilepsy has not made your child a different person from who he was before the diagnosis. It has just provided you with additional information about your child. He still needs praise, hugs, and kisses. He still needs discipline. A study by Dr.
If your child did not sleep with you before the diagnosis, you do not need to invite her into the bedroom after the diagnosis. If your child was bathing alone prior to the diagnosis of seizures, she should still have privacy in the bathroom once seizures are diagnosed. However, if your child loses consciousness during seizures, you will want her to take a shower rather than a bath and make sure that the bathroom door remains unlocked.
Some parents have placed a nursery monitor in the bathroom to allow their teenager to have privacy while showering, yet allow parents to know if a seizure occurs. Each of these potential roles takes some time. Because parents are busy with their new roles, all children in the family may have new chores so that there can be time left for family fun. Brothers and sisters may initially be angry about changes in family life. They may become jealous of the time you spend with the child with seizures, or of the attention he now gets from others.
It is important to have a little private time with each child in your family. Going for a walk together or spending a few minutes alone together prior to tucking the child in for the night can provide opportunities for siblings to share their feelings. Teachers, parents of friends, or relatives may also be good sources of information regarding how siblings are feeling. Sometimes when a child is diagnosed with epilepsy, relatives become more involved in the family. Grandparents, aunts, and uncles may decide to become an epilepsy information source, searching the Internet for treatment suggestions.
This assistance can be a good thing or a bad thing. As your lives become busier, it is important that you find time for one another. It is important that you have time to share information about all your children. It is important that you have time to discuss expectations for each child, to set consistent household rules, and to agree on consequences for rule violation. It is important that you have time to talk openly about finances and budgeting. Often one parent becomes responsible for taking the child to medical appointments.
Prior to medical appointments, it can help to make a list of questions that will be asked. The parent attending can take the list along and write down answers. Some physicians may be willing to take calls from the parent who cannot attend the appointment or schedule a separate time to meet with both parents together if a major decision needs to be made.
Sometimes children with epilepsy have parents who are divorced. Sometimes these parents have remarried, adding step-parents to the caring network surrounding the child with epilepsy. Communication remains the key for helping your child. Your neurologist must be aware of custody arrangements, particularly whether one or both of you retain the right to make medical decisions.
If one parent is not allowed access to medical information, your neurologist needs to know this as well. Epilepsy is no different than other chronic childhood medical conditions in that the diagnosis can mean changes in family roles and challenges to family finances. Epilepsy does differ from other medical conditions in that there is still a great deal of misunderstanding associated with this diagnosis. Unlike other children, parents and teachers often feel confused about how to respond to this misbehavior. What if it is a seizure?
What if the medication is making him act that way? What if discipline makes her have a seizure? Too often, misbehavior is ignored as parents attempt to find the answers to these questions.
All children misbehave as they learn ways to cope. Providing a child with structure and limits provides a safety net as she explores means for coping. Failing to provide discipline and guidance into more socially acceptable ways of coping robs the child of this security and of an important learning experience. Children misbehave to achieve a goal. The goal may be to rid themselves of an uncomfortable feeling such as frustration, anger, fear, or sadness. The goal may be to avoid frightening or frustrating situations.
The goal may be to gain adult attention. The goal may be to demonstrate limited competence so that help is always available. The goal may be to test the limits to make sure that her safety net is dependable. When you understand the goal, you will understand how to help your child learn a more appropriate way to meet it. Discipline is important for two reasons. This gives your child the opportunity to be successful as he leaves home, initially to play with others, then to go to school, and eventually to live on his own. Second, it provides your child with a sense of security. Emotional reactions can leave a child feeling overwhelmed and out of control.
Consistent discipline lets your child know that you will not let his actions go too far. Your child will know that he is safe because you are there to help. The presence of seizures and medication often cloud the process. Questions about possible seizure activity may be substituted for questions regarding the goal of the misbehavior.
Questions involving effects of medications may interfere with action to help the child learn a more appropriate behavior. At least, not until the parents are certain that she really meant to do it. If your child has seizures characterized by staring, this question may arise when she does not respond to the direction that you have just given.
How can you be sure that you were heard and understood? You use the same approach as parents whose children do not have epilepsy use to make sure that they are understood. If your child is watching TV, turn it off or stand between the child and the screen. If your child is looking at you, she is more likely to be listening to you. Do you want to brush your teeth first or put on your pajamas? Look for signs of typical seizure.
If you see seizure activity, re-orient the child and give the direction again. Many children can repeat back what they have heard, but still do not know how to turn that information into action. By having your child demonstrate what was commanded, you can be sure the child understood.
Demonstration has the added bonus of getting your child started on the task. Redirect the child to the task. You can either remain to supervise task completion or let her know that you will check back to make sure the task is done. When children have complex partial seizures, questions may arise regarding whether or not aggressive behavior was the result of a seizure. Observing the kind of aggression that has occurred usually provides an answer to this question. Children experiencing complex partial seizures may react with aggressive behavior if someone attempts to restrain their movement.
This reflects the fact that the child is confused. The aggression is in the form of combative behavior, attempting to get away from the restraint. Combative behavior will occur regardless of who provides the restraint. Automatisms, repetitive actions during a seizure, may inadvertently lead to destruction of papers on which the child is working or of material handled during the seizure. Children experiencing automatisms demonstrate the same type of automatism with each seizure, with damage to property only occurring if something happens to be within reach. During seizures, individuals do not become aggressive in the sense of seeking out and hurting others.
When Joey slugs his sister or Suzie pinches her brother, this is not a seizure. She may be able to provide an answer or may recommend a prolonged EEG recording to capture the behavior that concerns you. Children with frequent seizures or attention problems can be provided with a checklist that outlines the steps they are expected to complete. Involve your child in making the checklist by talking about each step for the task, and asking him to suggest a key word or phrase to remind him of the step.
For young children, pictures can be substituted for the phrases or key words on the checklist. For frequently occurring tasks, such as daily chores, a wipe off board or laminated checklist allows your child to actually mark off each item as it is completed. Initially the number of steps on the list should be kept small. You may need to check frequently to ensure that your child is making progress with the list.
If the child is off-task, interrupt her and prompt her to look at the list, helping her to recognize what she should be doing. As your child learns to use the checklist, you will be able to gradually reduce the amount of supervision you provide. There are two types of medication side effects. First, changes in behavior can be the direct consequence of the medication. Medications differ in their likelihood of producing behavioral side effects and in the kind of side effects they produce. For some medications, behavioral side effects are consistently related to use of the drug.
For others, side effects may occur only at certain doses, or only as the child is getting used to the drug. Since children react differently to medications, it is important that you use experience with your own child rather than base your decision on what happened to some other child on this medication. Indirect effects occur when side effects of a medication provide your child with a new challenge with which to cope.
For example, medication may make your child more fatigued or increase his appetite. Introduction of a medication may make your child feel different, such as light-headed or dizzy. Skill changes, such as a fine tremor that slows writing speed, slowed thinking, or word finding problems, may increase his level of frustration.
For young children, the lack of an effective vocabulary to talk about these changes may produce fear and confusion; these in turn may result in an increase in clingy behavior, irritability, and moodiness. You need to be a good observer, a good detective. Is there a relationship between the behavior and a change in medication? Is there a pattern involving problems only at certain times of day?
Is the behavior worse during the week or on the weekend? Is it a problem at school? Is it just a problem at home? Keep in mind that children with epilepsy are not immune to the many other normal stresses encountered in childhood and adolescence. Childhood stresses include: moving to a new home; parent change in employment going to work, new hours ; death of a family member, friend, or pet; illness of family member; parental conflict, separation, divorce; natural disaster tornadoes, hurricanes, floods ; highly publicized criminal behavior e.
The key to understanding whether or not medication is playing a role is to look for timing. If medication is contributing to behavior change, you would expect to see the emergence of the behavior or an increase in its frequency after a medication change. Some behaviors are dose related, and occur when the medication is at its highest or lowest level in the blood stream.
For doserelated effects, behavior problems tend to happen at the same time each day. Behaviors related to medication change are usually evident in more than one setting. If problems occur only in one setting, the behavior change is less likely to be medication related. There are two answers to this question: change the medication or deal directly with the behavior. You need to share your observations with your neurologist. Sometimes, the neurologist can suggest another medication that would be equally effective.
The neurologist may ask you to give the current medication more time to see if behavior improves as your child adapts to it. When the neurologist encourages you to manage the behavior, two approaches can be taken—you can try to contain the behavior, or you can work on teaching your child a different, more appropriate way to deal with the emotional or physical changes that resulted in the inappropriate behavior.
Containing the behavior means that you accept that the behavior will occur and focus on changing the environment so that the behavior becomes a less serious problem. Changing behavior involves the teaching of new coping strategies. Some medications make a child moody or irritable. The child appears to be on an emotional roller coaster. Often aggressive behavior, either verbal outbursts or evidence of physical aggression, occur with little to no warning. The child is taught to change her coping strategy. For irritable behavior, the child can be taught to recognize when anger is increasing and to leave the situation before losing control time away.
Taking time away is a means of containing irritable or aggressive behavior. This approach works best when the child is helped to identify a means for releasing her feelings. In other words, the child is taught a new coping strategy. For example, she may be sent to her bedroom time away and encouraged to hit a pillow or rip up old newspapers coping strategy.
The child may be taught to take a few deep breaths and count to 10 coping strategy. This intervention focuses on containing the problem by addressing an environmental factor that contributes to the inappropriate behavior. Some medications may result in a skill change such as decreased impulse control, decreased attention span, difficulty retrieving words, tics, or tremor. For these types of problems, the environment must be changed to contain the problem, limiting the effects of the skill change on daily functioning.
For impulsivity and hyperactivity, this may involve adding structure in the environment through increased supervision and more clearly defined rules and boundaries. The disruptive effects of tremor on handwriting can often be avoided by using computer technology as a means for completing written work. The effects of word finding problems on skill demonstration in school can be reduced by the use of recognition format tests e. When tics involuntary, repetitive movements or vocalization are present, it is important to educate teachers and friends so that the child is not punished or teased for the tics.
Many parents express fear that discipline will result in emotional upset, which in turn will trigger a seizure. For most children, seizures are a random event. They can occur at any time, without warning. If a seizure occurs while the child is sleeping, few parents would conclude that they should not let the child sleep.
If a seizure occurs during an important activity, such as while attending reading class, few parents would conclude that the child should never learn to read. Some moments are part of life sleeping , part of growing up enjoying a party , or too important to be avoided learning to read. However, some parents view discipline as something negative that they are expected to do to their child, rather than as a positive learning experience for their child. Thus, if discipline is associated with a seizure, discipline is optional.
After all, the reasoning goes, the child already has too much to cope with because she has seizures. This line of thinking is faulty in two respects. First, children gain security from knowing that there are rules and boundaries. If the rules that they have trusted are suddenly changed, children experience more rather than less emotional distress.
Children learn coping strategies by facing the problem causing the stress, not by avoiding the stressful situation. Every child will experience negative consequences for behavior from someone. Every child needs to learn how to handle it. This fear is most often expressed when children demonstrate fluctuations in important skills such as language comprehension or motor control related to seizures or medications. By trying to be fair and by attempting to make life easier for the child, the parent has acted in a manner that makes life more unpredictable, and therefore more difficult, for the child.
What can a parent do? First, look at the relationship between the skill change and the command that was given or the rule that was broken. When there is no relationship between the skill change and the command given or rule broken, the child deserves to experience the usual consequence of his misbehavior. Third, be consistent. You may change the content of commands, the frequency with which you give commands, or the manner in which the command is given in response to skill changes following seizures.
However, it is essential that when you give a command, you also enforce it. Fourth, some rules are too important to ever be broken. It is never OK to give your brother a bloody nose or bite your teacher. It is never OK to play in the middle of a busy street. A number of books have been written for parents on behavior and discipline. You can start at your local library or check with your local school district. Some schools provide parenting groups through community education programs. The school psychologist, guidance counselor, or social worker may also be able to direct you to appropriate reading material.
Representative books regarding discipline are listed at the end of the age-specific chapters that follow. Seek professional help. A child psychologist or psychiatric social worker can work with you and your family in applying general parenting principles to the unique demands of your family and your resources.
If your child had diabetes or a heart condition, would you tell the school? Parents fear that other children with tease their child, or avoid her. However, there are three good reasons for telling school personnel your child has epilepsy: reducing stigma, protecting self-esteem, and ensuring your child gets appropriate treatment in a medical emergency. By not telling the school that your child has seizures, you may be contributing to stigma.
School personnel will miss the opportunity to learn about the range of seizure manifestations, and fail to gain the personal experiences that provide the basis for understanding. They will have no reason to make epilepsy education a priority for themselves or for their students. Ignorance sustains stigma. Education and personal experience reduces stigma. Your child knows that he has seizures. Your actions are telling your child that seizures are so bad that no one can find out about them.
However, if your child is on medication, the school needs to know what medication he is taking even if you do not provide the reason why it is given. Although rare, emergencies can happen at school. Children fall and break a bone. Children sprain ankles. Children run into each other, knock heads, and briefly lose consciousness. If your child needs emergency medical care, you want school personnel to be able to provide all the information necessary to the emergency medical staff so that they can help him. Remember that epilepsy refers to recurrent unprovoked seizures, but that these seizures may take many different forms.
It is your job to provide the school with resources to help them get accurate information. Contact the Epilepsy Foundation via the Internet at www. The Epilepsy Foundation is a wonderful source of written information for your school. It can also provide you with the name and location of the regional Epilepsy Foundation chapter closest to you. A catalog for this bookstore can be mailed to you if you do not have Internet access. What is appropriate for helping the preschool- or kindergarten-age child would not be appropriate for the student in high school.
Specific suggestions for helping your child talk with peers about her epilepsy are included in the age-specific chapters that follow. In general, your child needs a label for her seizures. For younger children, this can be accomplished through role playing i. For older children and adolescents, the child may want to practice with a good friend before taking on other students.
This description should include what the teacher might see before a seizure. Some seizures have warnings, such as staring, repeatedly swallowing, a funny sensation, or seeing colored patterns. The teacher needs to know what will occur during the seizure and how long it will typically last. Will he stop work and stare? Will he fumble with clothing?
What will his hands, arms, and legs do? Finally, the teacher needs to know what happens when the seizure ends. Will your child be able to immediately return to work? Will he be confused? Will he need to sleep before being able to return to school activities? If your child has more than one type of seizure, the school should be provided with this information for each type of seizure manifestation. School personnel need to know what you do for your child during a seizure.
Do they need to protect your child from falling or guide your child if she begins to wander? Should they just observe the seizure while providing reassurance to other students? Will they need to help your child get back on task when the seizure is over? Will your child need a change of clothes at school due to incontinence during the seizure? They also need to know if you want to be informed of every seizure that occurs at school.
If you want to be informed, do they need to call you as soon as a seizure occurs, or simply send home notes to let you know how many seizures were seen during the day? Do you want the school to keep a seizure log, sharing it with you on a weekly or monthly basis? Are there specific types of seizures or a length of seizure that requires medical intervention?
If you are unsure, ask your physician to help you set guidelines for the school staff. Many neurologists work with a nurse who can be a contact to the school nurse or health aide, answering questions about the seizures and medications. They need to know when things change. If your child has developed a new seizure type, you need to provide the school staff with a description. Some schools have refused to allow the child to participate in strenuous activities such as physical education class or exciting activities such as field trips, for fear of causing a seizure. Some schools have refused to allow the child to climb a flight of stairs for fear that if a seizure occurred, the child would be injured.
While these restrictions sometimes may be appropriate, they are not appropriate for all children with epilepsy. If your school has outlined restrictions for your child, discuss these restrictions with your neurologist. She can help you determine what restrictions, if any, are appropriate for your child. The neurologist can then provide a letter to the school administration indicating that inappropriate restrictions should be lifted. What does this mean? Risk refers to the chance that something will happen.
Empowering Epilepsy Recommended Reading List
Every child is at risk for learning problems, but for most children this risk is extremely low, meaning that it is unlikely that problems will occur. However, this does not mean that it will happen to your child. We know from research that the risk of learning problems is related to a number of factors, including age of seizure onset, type of seizures, number of seizure types the child experiences, type and number of medications, and frequency of seizures.
These factors are not independent. The type of medication chosen for your child is related to the type of seizures that your child experiences. Different types of seizures are likely to become evident at different ages. The size of the steps taken in learning skills may be smaller. Your child may need more practice to learn and remember a skill.
He may need certain kinds of material more verbal description or more visual materials in order to learn. Learning problems come in many forms See Table 4. Some children with epilepsy have subject-specific learning problems. Children with complex partial seizures are at increased risk for this type of learning problem. While the child does well in some subjects, one or two subjects are extremely difficult. A learning disability reflects a relative weakness in some type of information processing.
Information processing refers to how the child interprets what he sees or hears, not to how well the child sees or hears acuity. If the weakness is in auditory processing, the child may have a disability that involves reading, spelling, or written language. If the weakness is in visual processing, the child may have a disability involving math or handwriting. Intervention involves teaching the problem subject in a different way than it is taught for most children e. If a child experiences a slower rate of learning in all subjects, this may reflect lower than average intelligence.
When the learning problems are accompanied by delays in the development of self-care skills and social skills, the more appropriate term is mental retardation. Mental retardation refers to a slower rate of learning. It does not mean that a child is unable to learn. The child with mental retardation needs skills broken into smaller steps, with fewer steps presented at one time.
Children with generalized tonic clonic seizures, with multiple seizure types, or with frequent, prolonged, poorly controlled seizures are at increased risk for mental retardation. Children with epilepsy may have other special learning needs. Some children have difficulty with memory.
Memory involves a number of steps, including initial encoding, transfer of the information to a long-term memory store, and finding the information again once stored. Seizures and medications can affect any or all steps in this process. Once the step s being affected have been identified, study strategies or methods for measuring learning can be modified to help the child. Some children with epilepsy experience brief lapses in consciousness that disrupt their attention.
These children may need a study partner, closer supervision from the teacher, or to be allowed to tape record lectures. Many children with epilepsy process information more slowly than average. These children may need reduced assignments or extra time to complete assignments and tests in order to compete fairly with peers. Some children with epilepsy have difficulty with organization and planning, leading to problems with working independently. These children may need more structure from teachers and may require direct instruction in order to learn ways to stay organized.
While visiting the classroom, look at the work posted in the room, so that you can get a sense of what other children are able to do. It is normal to see a range of skills. You want to know if your child is within that range. Talk with your child about school.
Does your child like to go to school? Go over completed work that your child brings home. You can use the completed work to check on her understanding of the assignment. Do homework with your child. You will learn a lot by having your child show you what she is supposed to be doing with assignments, or by having her explain directions to you. Observe your child in activities with other children of the same age. Does she relate well to peers? Does your child share the same interests as others? Does she seem as coordinated as her peers?
First, get more information from the teacher. Most often, teachers begin the conversation by providing you with their conclusion e. Ask for a description. What has the teacher seen that has led her to draw this conclusion? Find out when the teacher first noticed the problem.
You want to know if the problem is getting better, worse, or staying the same. You need to know if the problem is evident throughout the school day. Ask what happens as a result of the problem. Does your child have other children doing written work for him? Is your child unable to read math story problems, but able to read his reading textbook?
Does your child still have to do the math story problems even if he can not read? Find out what the teacher has already tried. Has the teacher given your child some extra help, or referred her for remedial services? Did the teacher try any different ways of presenting the material that is hard for your child? With this information in hand, you are now ready to talk to your child.
Let her know that the teacher has concerns, and reassure her that you want to help make school go better for her. Ask your child what she thinks will make it better. Your investigation may have provided you with the answer to how to help your child. If not, you may want to contact your neurologist with the information that you have collected. Section of the Rehabilitation Act of applies specifically to individuals with a physically handicapping condition. See Table 4.
The first step in this process is for you to meet with school staff multidisciplinary team to discuss your child and what the school plans to do to better understand his special learning needs. An assessment plan will be generated describing what tests and classroom observations will be done.
The school staff person responsible for each test or observation will be listed. This may include special education teachers, a school psychologist, a speech and language pathologist, an occupational therapist, and a physical therapist. A teacher may observe your child working in his classroom. The school social worker may meet with you to gather more information about your child. The school needs your permission to do this assessment. When the assessment has been completed, you will meet with the multidisciplinary team to review the results. This defines what services your child will receive, the goals that his teachers expect your child to accomplish with these services, and when his progress will be reviewed.
This means that you can offer suggestions about the goals that you want to include and goals that you do not feel are appropriate for your child. The school needs your permission to provide the services identified in this plan. IDEA is a federal law that has created an outline of the process through which children shall be identified as having special needs. Each state has passed legislation defining how this law will be carried out in that state. Most states have parent advocacy groups that can help you learn about the laws in your state. If disagreements arise, these groups can help you locate a parent advocate—a parent who has been trained to help other parents resolve disputes with schools.
Cohen M. Chicago: Monahan and Cohen Law Firm, It often addresses issues such as modifications in testing procedures e. A neuropsychologist may use some of the same tests that are used by the multidisciplinary team in the school. The neuropsychologist is interested in how your child achieved the scores. If your child does poorly on a task, neuropsychologic assessment is focused on breaking the task into components and attempting to identify what piece of the process is missing.
When the neuropsychologist sees a weakness in a skill, she uses additional tests to try to identify why weaknesses are present. She can then select tests sensitive to these problem areas. She may talk to you about your child being an auditory or visual learner. Compensatory skills can be introduced before a problem develops rather than after your child has experienced failure.
Your neurologist can help you make this decision. In addition, you may want to consider practical issues such as the speed with which your child will be seen by the school assessment team and whether or not your insurance will help to cover the cost of neuropsychologic assessment. The Model IEP in Appendix A summarizes testing approaches that the school staff can use to begin assessment of problem areas that occur frequently in children with epilepsy. After the change in treatment, the neuropsychologist repeats the baseline tests to see if the treatment resulted in a change in skills.
For most children with epilepsy, the reason for the seizures is not known. However, some children have seizures as a result of a malformation a small part of brain that does not form correctly , as a result of a tumor, or as the result of damage to the brain such as a stroke or accident. The school has the right to have a staff person present during this review. The school staff will either remove the information or mark it as no longer accurate.
For a child to be successful as an adult, she has to feel effective and that she can meet any challenges that occur. Untreated learning problems result in school failure, which in turn damages self esteem. While a child may be teased about getting special help, children are also teased about failing in school.
If the child feels successful—has positive self esteem—she will be able to handle the teasing. Labeling your child in order to get the educational services that she needs is a small price to pay for supporting her self esteem. If your child attends a private or parochial school, he is still eligible for all of the services covered by IDEA. These services are available to him through the public school district in which you live. Your child is entitled to assessments by the therapists and psychologists employed by the public school.
If he needs special education services, he can receive these services through the public school. In other words, you may have to take your child to the public school for testing. The public and private school may need to work out a way for your child to get special education services at the beginning or end of the school day, moving between the public and private school setting.
Section applies to any school that receives federal funding. A private school does not have to make the accommodations that a public school must make under Section However, most teachers are committed to helping the children they teach. Most teachers are willing to make the accommodations that your child needs even if they are not required by law to do so. If your child develops special educational needs while attending private school, it is important to weigh the advantages and disadvantages to continuing at the private school.
Private schools often offer a smaller class size. What your child misses in special education service may be offset by what he gains in individual attention from the teacher. Friendships are another important consideration. If your child has met with acceptance and understanding in his current school setting, it may be best to keep him in that setting.
It is helpful to make lists of the advantages and disadvantages offered in each setting when deciding if a change in schools is appropriate. All parents dream of their child growing up, getting a job, and establishing a life of his own. These dreams are challenged when mental retardation or severe learning disabilities occur. In some cases, dreams are shattered. If your dreams are challenged, allow yourself time to grieve. It is a normal reaction. Recognize that grief may pop up repeatedly as your child grows to adulthood, often triggered by events that remind you of your old dreams.
Build new dreams for your child. Every child achieves something. Helping children to do well in school is a big job for any parent. That job is more difficult when your child has a chronic health problem. When your child has a health problem that is often misunderstood, the job is even more challenging. But there is good news. You will find teachers, speech pathologist, occupational therapists, physical therapists, psychologists, and neuropsychologists to work with you to help your child succeed during the school years.
Grosselin K. Taking Seizure Disorders to School. Bowman Grey Medical School. Seizure Man: In the Classroom. Spider-Man Battles the Myth Monster. Marvel Comics. The frontal lobes are connected to all other parts of the brain. They contain the motor pathways that allow us to respond to what is occurring around us.
While other parts of the brain process and interpret sensory information, the frontal lobes determine what response is made to that information, organizes the response, executes it, and assesses the effect to determine if the response should be repeated in the future. While other parts of the brain are involved in storing information in memory, the frontal lobes are involved in retrieving that information and applying it to new situations. The frontal lobes play a role in determining where attention is focused and how long it stays focused.
Frontal lobes control motor output, our means of demonstrating what we are thinking, feeling, and wanting to do. These skills develop gradually during childhood and adolescence. A variety of behaviors can occur when the frontal lobes do not function effectively. The specific set of problems you may see in your child are related to the specific areas of the frontal lobe that are not working well.
In some cases, dysfunction makes it hard for a child to start a response. He may be unable to find something to do, just sitting and doing nothing until prompted by his parent and helped to get involved in an activity. The child may know that he wants something, but make no effort to get it unless it is visible to him. Problems with initiation are less common than problems with stopping or inhibiting responses. When a child has problems stopping or inhibiting responses, this problem is called disinhibition.
Some children with frontal lobe dysfunction have difficulty keeping their thoughts to themselves. The child says whatever she is thinking. She may interrupt when others are speaking or change topic in the middle of a conversation. Frequently, comments are tangentially related to what is occurring.
Some children with frontal lobe dysfunction are impulsive. The child acts before he has a chance to consider if the action is really a good thing to do. For example, the child may run into the street without looking just because he saw a friend on the other side. He may get up and run to the window because he hears a siren, even though he is in the middle of dinner. Impulsive children have difficulty delaying the meeting of a need, such as waiting to eat a meal if they happen to be hungry or waiting their turn to play a game. Organizing How to Respond The frontal lobes are responsible for generating problem solving strategies and organizing responses.
While all young children engage in trial-and-error problem solving, children should become more systematic in their approach with age. Instead of repeating errors, the child becomes more aware of things she has already tried and avoids repeating errors. The next step in normal development involves learning to use language as part of the problem solving process. First, children will talk out loud, appearing to discuss options with themselves. They do not appear to pay close attention to their work, fail to recognize an accurate action, and make the same mistake repeatedly. As a result, efforts to reach the desired goal are often met with frustration.
The frontal lobes are involved in sequencing a pattern of movements to achieve a specific goal. For example, he may stack toys on top of dirty clothes, only to then dump the stack of toys to pick up the dirty clothes. The frontal lobes are also involved in organizing language output, or sequencing thoughts in order to relate an event or information in an organized fashion.
Children with problems that involve frontal lobe functions may relate bits of information, with the listener then faced with the problem of organizing and integrating it in order to understand what the child meant. In relating an event, the child may mix information from the ending with information from the beginning. For example, a child may start telling a stranger about various family members without recognizing that the stranger does not know to whom the names refer.
Organization of visual scanning, such as moving from left to right to read, is a frontal lobe function. Most children learn to scan from left to right across a page, which is essential for reading. Children with frontal problems may skip words or lines in their scanning efforts. On worksheets, these children may jump around, completing whatever item catches their interest. They may turn in worksheets that are incomplete, failing to recognize that they missed some of the items.
Adapting Responses Children with frontal lobe problems may fail to alter future responses based on the effect of a past response. They may repeat the same behaviors over and over again even though they are ineffective. For example, a child may repeatedly ask the same question even when she knows the answer. She may make a mistake in school work, erase the mistake, and make the same mistake again. This inappropriate repetition is called perseveration.
Perseverative behavior can contribute to problems in accepting transitions getting ready for school, changing to a different subject in school, stopping play to eat a meal. Such children may become upset when parents or teachers need them to shift from one behavior or activity to another. Often children with frontal problems are dependent on routine and become upset if the routine is interrupted or changes. Regulating Emotions Most of us are able to feel emotions with varying degrees of intensity. Someday, it may be possible to tailor web-based health information to the learning style and, potentially, language and literacy level of a specific user.
Design guidelines specific to websites are evolving as use of the Internet for health care communications expands to ensure readability for populations with limited literacy Eichner and Dullabh, Nevertheless, guidelines that do exist emphasize many of the same themes relevant to health communication in general:.
There are downsides to health information obtained online, including varying quality of the information, complexity that may lead to misunderstanding, and its sheer volume Lewis, The author of this study highlighted the potential value of the Internet in educating patients and families, which has the potential to help health care providers maximize their time with patients. Another Canadian study of families of children with epilepsy found that Internet sites were the most often used sources of information outside the clinic, and those recommended by a health care provider were judged by families to be the most accurate Lu et al.
In a review of the literature on how Internet users find, evaluate, and use websites for health information, Morahan-Martin found that many users are concerned about the quality of the information they retrieve, but their skills in evaluating the material are limited. The author recommended that health professionals specifically recommend sites and be proactive in helping patients and families become better at conducting searches and evaluating and using the information found. 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. The committee has identified this as an opportunity for epilepsy organizations to fill an important gap in patient and family education. These organizations could collaborate on a common website clearing house linking to the spectrum of websites that include reliable, high-quality information.
The common website could describe the content and types of information found on various websites, along with contact information for the organizations providing it. Information about the common website could be widely disseminated to the full range of professionals who work with people with epilepsy. Based on its review of Internet sources of patient and family education, the committee concludes the following:. The committee has identified the need for more research to guide the delivery of patient and family education in epilepsy.
Individuals and families vary greatly in how they want to receive information, with some wanting it orally, some wanting written instructions, and some being comfortable using the Internet, which suggests that educational content will reach the greatest numbers of people if it is made available in multiple formats. Oral face-to-face education could be delivered to small groups, requiring less time from health care providers Couldridge et al.
Delivery mechanisms need to take into consideration the age, health literacy level, and cultural background of the target audience. Studies are needed on relationships between Internet use for education and various clinical or psychosocial outcomes. Epilepsy-specific websites need to be evaluated for their inclusion of information that reflects health literacy and cultural considerations. Knowing which websites are best suited to different population groups would aid health professionals in making recommendations to patients and families.
The committee also noted that research on the use of social networking websites for information sharing and obtaining social support for people with epilepsy is needed. In short, although today there are many more channels for delivering health education about epilepsy, what is not yet known is which channels are the most useful for which purposes. For example, social networking websites may be most effective in providing social support or helping families with practical problems encountered in daily living; epilepsy-specific websites may be most effective in helping individuals with epilepsy and their family understand drug regimens and side effects, because they can be visited repeatedly, or in identifying local resources; and a one-on-one visit with a clinician, in which follow-up questions can be asked, may be the most effective educational approach in initial conversations about diagnosis and in providing the motivation and reassurance to engage in self-management.
Health professionals have been informally educating patients and families about epilepsy for many years using a variety of strategies and supporting materials; however, only in recent decades have formal education models and programs been developed that focus on self-management strategies to improve health outcomes, quality of life, and well-being.
Sometimes, a caregiver is not related to the individual at all. Many people with epilepsy may find full participation in self-management beyond their capabilities for any number of reasons—such as age, developmental status, extent of impairment and comorbidities, overwhelming personal situations, or low health literacy—which makes it difficult to understand, take necessary steps, or follow clinical recommendations.
The broad definition of self-management for chronic health conditions used by Lorig and Holman includes reference to both tasks and skills that can be introduced through education. The tasks focus on three areas: managing the medical aspects of the condition, adapting or creating new behavior and new roles that incorporate the condition into one's life, and dealing with the emotional effects of having a chronic condition; and the five skills involve learning to solve problems, make decisions, use resources, develop partnerships with health care providers, and take action.
It is important to note that learning self-management skills begins with education and that a critical goal for patient and family education is to help people acquire and master self-management skills. This section focuses on the educational factors and efforts that are necessary to facilitate and promote optimal self-management for people with epilepsy and their families. Over the last two decades, a number of self-management programs have been designed that include educational programs, behavioral and counseling programs, and mind-body techniques DiIorio, A number of the efforts focused on education are described below.
The identification of the core elements of self-management for individuals with epilepsy is an evolving process that has been informed by the Living Well Conferences and the work of the Managing Epilepsy Well MEW Network, 9 an organization whose mission is to advance self-management in the epilepsy field AES et al.
Core elements of self-management models often focus on the connections between knowledge, attitudes, skills, and behaviors and individuals' ability to manage seizures, medications, safety considerations, communication, and healthy lifestyle choices Buelow, ; DiIorio, , ; Shope, 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 theory 10 Buelow and Johnson, ; Clark et al.
Many of these elements support the need for a patient-centered approach to education, provide individuals and their families with knowledge and skills that promote competency in optimal self-management, and apply to managing both epilepsy and its comorbidities. Knowledge and skills necessary for optimal self-management can be divided into two broad categories—epilepsy-specific management and chronic care management.
Epilepsy-specific self-management domains relate to managing seizures, medications and treatments, safety concerns, seizure triggers, and comorbidities. The epilepsy-specific knowledge needs of individuals and their family vary, depending the characteristics of seizures and the severity of comorbidities. Other information is useful for all people with epilepsy and their families.
For example, they must understand the importance of medication adherence, because nonadherence is a common trigger for the development of status epilepticus Neligan and Shorvon, and is associated with higher rates of emergency room visits, hospital admissions, auto accidents, fractures, and mortality in adults Faught et al. Chronic care self-management education domains relate to knowledge and skills that are necessary for maintaining a healthy lifestyle, having an active partnership with the health care team, and living independently—broad domains that are important to all individuals living with a chronic condition regardless of the specific condition.
Table provides an overview of the knowledge and skills for epilepsy-specific management and chronic care self-management. 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.
There are signs of progress, however, with a number of innovative education programs that are now under development and being evaluated. This section describes what is known about the efficacy of several epilepsy-specific educational and self-management programs for children, families, and adults. These descriptions are followed by discussion of a program specific to seizure-like events with a psychological basis and a review of educational programs for people with low health literacy. In its review of the literature, the committee determined that educational programs for children and their families were generally intended to increase knowledge about epilepsy; improve skills in self-management, communication about epilepsy to others, and developmental tasks e.
Programs differed in length from intensive 2-day programs to weekly sessions over months , intervention strategy e. Although many education programs focused solely on epilepsy, others were geared toward families of children with epilepsy and cognitive comorbidities; Buelow , for example, taught parents of children with long-term epilepsy and learning difficulties skills related to problem solving, partnership development, and advocacy.
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 Glueckauf et al. A challenge for many U. Nevertheless, programs tested in randomized clinical trials and those with sound methodologies have achieved improvements in a number of outcome variables for both children and parents.
In a review of epilepsy education programs for youth, Lewis and colleagues found these programs produced positive trends toward improvements in health-related knowledge and quality of life. The evaluation of a large, comprehensive educational program for children is highlighted in Box Tieffenberg and colleagues developed a program to enhance child autonomy and self-management and tested it in children, ages 6 to 15, with epilepsy. The program involved five weekly meetings more Other promising research may contribute to the field by overcoming recognized limitations in program and study design, such as the lack of a theoretical foundation for a program and limited study participation.
For example, despite a small sample size, Wagner and colleagues used empirically supported cognitive-behavioral treatment as the foundation for their COPE Coping Openly and Personally with Epilepsy program, which has the objective of improving skills related to self-management, self-efficacy, and coping. Other programs use communications technology to make education programs more available to families unable to travel long distances to participate. For example, Glueckauf and colleagues used videoconferencing to offer counseling to rural teenagers and their parents, and Austin and colleagues used telephone conferencing to deliver tailored educational materials for the Be Seizure Smart intervention.
The curriculum was carefully developed based on needs identified in qualitative interviews and further evaluated in a pilot study. Teaching methods also varied and included imagination techniques, role playing, and teaching problem-solving skills using an experience-based learning approach. The intervention was an intensive 2-day program delivered to parents and children separately; data were collected immediately before the program and 6 months later.
Compared to a control group, children in the intervention group showed greater knowledge about epilepsy and improvement in parent-reported self-management and communication skills. Parents showed improvement in knowledge and fewer epilepsy-related worries. Relatively few evaluations of epilepsy-specific educational programs for self-management were found for adults. However, the committee found significant recent progress in the development and evaluation of self-management educational programs through the MEW Network DiIorio et al.
One of the earliest adult programs, the Seizures and Epilepsy Education SEE program, 12 delivers health education and psychosocial therapy in a 2-day program. The program uses facts to resolve common fears of individuals with epilepsy and their families, provides information on medication management, and teaches strategies for living successfully with epilepsy. A small randomized clinical trial by Helgeson and colleagues tested the SEE program and demonstrated a significant decrease in participants' fears and misinformation or misunderstandings, as well as a significant improvement in self-management and medication adherence, compared to the control group.
The modules are designed to improve knowledge about epilepsy, its treatment, and its psychosocial effects; self-management; and independence Ried et al. Participants reported significantly greater knowledge, improved coping with epilepsy, and improved seizure outcomes at the 6-month follow-up.
The committee found assessments of two self-management programs for adults with epilepsy who also had intellectual disabilities. Clark and colleagues evaluated a video-assisted program that involved three 1-hour group sessions, a minute video that was viewed twice, participation in a discussion of epilepsy medication and safety, and learning about using seizure diaries. Pre- and post-assessments documented a percent increase in knowledge about epilepsy, with increases particularly in understanding the purpose of an electroencephalograph EEG and the need to keep a seizure diary.
This multimedia program, which used film clips, quizzes, and photographs, was led by two trained interviewers and was presented over eight 2-hour sessions.
A pilot study showed high participant satisfaction with the program characters and the social interaction during the program, and an increase in participants' knowledge about seizures and medication. Educational programs developed for improving self-management via the Internet also are being tested. The theoretical foundations for WebEase include social cognitive theory Bandura, , the transtheoretical model of behavioral change Prochaska and DiClemente, , and motivational interviewing Miller and Rollnick, WebEase program modules encourage participants to learn about targeted concerns, explore readiness for change, and set goals.
Participants have access to online tools that are used to track thoughts, concerns, actions, and progress. Modules focus on medication-taking practices, sleep, and stress management. The program was evaluated in a randomized controlled trial in adults with epilepsy and demonstrated improvements in medication adherence, perceived stress, knowledge, and self-management compared to a control group DiIorio et al. This study also collected information from participants about their experience in using the online program that could be helpful in further program development DiIorio et al.
Despite the advantages offered through online programs, some individuals prefer programs that consist of individual meetings or in-person group meetings that are led by a health professional or a peer Fraser et al. Although literature reviews show few assessments of educational interventions for seizure-like events that are determined to not be epilepsy Martlew et al. One educational program that shows promise was developed by Hall-Patch and colleagues in the United Kingdom, based on the self-regulation model Leventhal et al.
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. There was also a guide for physicians with explanations for each of the points and advice for providing information to patients. Follow-up interviews indicated that 94 percent of patients found the leaflet easy to understand, and only 11 percent had questions that it did not answer.
Although 86 percent of patients reported negative emotions during the consultation, 94 percent had their questions answered, and 90 percent felt their feelings had been heard. Moreover, only 14 percent were confused about the diagnosis, and only 4 percent were angered by it, a much lower rate than described in an earlier study 18 percent among people who did not receive an educational intervention Carton et al.
Approximately 3 months later, 63 percent of the study participants had a greater than percent reduction in seizure-like events, and 14 percent were event-free Hall-Patch et al. In addition to educational interventions, cognitive-behavioral therapy shows promise as an effective approach for reducing the frequency of seizure-like events and improving psychosocial outcomes for individuals who have seizure-like events with a psychological basis Goldstein et al. Clear communication about health-related topics not only helps those who have low health literacy, but can benefit everyone.
This concept is an important consideration for the development and evaluation of epilepsy education programs. Berkman and colleagues conducted a recent review of studies of programs for low-literacy populations, including those with diverse chronic diseases and conditions, not specifically epilepsy, but their findings regarding the impact of these programs are suggestive for this population. Findings from 42 studies of general interventions i.
Although the overall strength of evidence supporting specific design features was low in part because of the diversity of interventions , the following features seemed to improve the comprehension of low-literacy populations:. Berkman and colleagues concluded that intensive self-management and adherence interventions appeared to increase self-management and reduce disease severity, as well as reduce emergency department visits and hospitalizations.
Despite the paucity of epilepsy education program evaluations, the committee was encouraged that all of the programs that were tested documented significant improvements in at least one outcome. However, none of the programs appeared to have been tested in more than one study. Replication and assessment of existing programs, especially those tested in only a small number of individuals, are needed.
Moreover, new programs should be developed and tested in populations that have been understudied, including older adults, parents and caregivers of infants and young children, and individuals with uncontrolled seizures, serious comorbidities, and cognitive limitations. Finally, educational programs that include all of the recommended content for epilepsy-specific knowledge and skills that are necessary for optimal self-management described in Table also are still needed.
The committee noted the need for greater attention to cultural diversity in the programs. Educational programs developed for diverse population groups in other clinical areas have achieved positive results and might provide a model for epilepsy. 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, The committee found that many programs currently being developed have the potential to make major contributions to the field of epilepsy self-management.
Many are being guided by evidence-based principles of program design. For example, the WebEase self-management program, which is based on proven techniques of motivational interviewing and stages-of-change research DiIorio et al. Additional core modules could be developed for epilepsy-specific areas, such as comorbidities, safety, and risks including mortality, again using evidence-based methods. Finally, the positive outcomes from the available educational programs, coupled with the promise of innovative programs being developed, led the committee to conclude that this is a propitious time for the CDC to continue its investment in educational and self-management programs for individuals with epilepsy.
Existing MEW Network programs should be implemented using strategies that will ensure their sustainability and expanded use. The MEW Network could also work to develop additional educational programs for people with epilepsy across the life span and across the epilepsy spectrum. In selecting models from other health conditions that might suggest strategies to inform the development of educational programs for people with epilepsy and their families, the committee considered 1 the nature of the epilepsies, with their wide spectrum of characteristics and associated comorbidities; 2 the broad range of individual and family needs for information; and 3 the areas of knowledge and skill development identified in epilepsy self-management models.
Therefore, the committee explored both condition-specific models and models for the management of chronic health conditions in general and selected one of each for further exploration below. Diabetes educators are a model for the provision of condition-specific health education by a health professional and are certified by the National Certification Board for Diabetes Educators. Diabetes educators come from a variety of health care disciplines e.
Diabetes education programs are based on evidence-based standards and take into account the individual needs, goals, circumstances, and experiences of the patient. DSME is designed to increase knowledge, improve problem-solving skills, and develop skills for self-management. Patients learn informed decision making and how to establish effective partnerships with their health care team, which in turn can lead to improved clinical outcomes e. An Australian national consensus study on outcomes and indicators for diabetes education identified primary goals and optimal outcomes in three areas: living with diabetes, physical health, and cost-effectiveness Colagiuri and Eigenmann, Because of the difficulty in linking diabetes education with clinical and cost outcomes, the desired outcomes identified by this group were knowledge, self-management, self-determination, and psychological adjustment.
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, Of the eight studies selected for review, only two used a theory to underpin the education. Half of the programs measured both short-term and intermediate outcomes. Results demonstrated that both short-term e. Many programs developed collaborative relationships among diabetes care providers, researchers, and community programs, including faith-based organizations, support groups, and health clubs and recreational facilities.
These community partnerships were important to the success of all of the programs studied, by improving recruitment and continued participation Jack, Lessons from this review of DSME programs that are applicable for epilepsy education include 1 identification of the components knowledge, self-management, self-determination, and psychological adjustment that are relevant to optimal living with a chronic condition; 2 the importance of effective community partnerships in the delivery of educational programs; and 3 recognition of the importance of outcomes of educational programs over time.
Additionally, the development of a cadre of well-trained, certified diabetes educators could serve as a model for an educator program specific to the epilepsies. A major assumption underlying this generic approach to self-management is that many concerns, tasks, and skills are common to managing all chronic conditions Lorig et al. 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. The second needs assessment involved 11 focus groups of adults older than age It asked participants to describe, for example, the impact e. Information from these two needs assessments shaped both the content and the delivery of the CDSMP program Lorig et al. The theoretical foundation for delivery of the program is self-efficacy theory, which suggests that people do better in managing a situation when they believe they can do so successfully Bandura, There is empirical support for using self-efficacy concepts in self-management programs Marks et al.
The content is delivered in small groups of 10 to 15 adults with diverse chronic conditions and their family members. The group is facilitated by a volunteer lay leader, often someone who also has a chronic condition. The leader is trained and uses a teaching manual. The course is generally offered in weekly 2. ASMP was also developed based on needs assessments of patients and their rheumatologists. The two programs were compared in a randomized controlled trial and followed for a year.
Both programs showed improvements. However, short-term results indicated that individuals in the arthritis-specific self-management program had significantly greater improvement in distress, limitation of activity, and fatigue, compared to individuals in the generic program. Furthermore, there was a trend toward greater improvement in other outcomes, such as global health and pain. By the 1-year follow-up the gap in improvements between the groups had narrowed, and participants in both programs had significant improvements; however, overall improvement and self-reported ratings of global health and fatigue were still better for people who received the arthritis-specific program Lorig et al.
These findings have relevance for epilepsy. Individuals with epilepsy might benefit from attending CDSMP programs, because some of the content e. 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 self-management programs cannot be replaced with generic chronic health conditions education programs. S-9 should be at the center of a health care system that is designed to provide access to high-quality epilepsy care Chapter 4.
To be consistent with this broad framework for the delivery of health care, appropriate educational programs and resources ought to be readily available to ensure that people with epilepsy and their families and caregivers, as needed are knowledgeable about their condition and have the requisite skills to engage in productive interactions with their health care team. The committee conceptualized a combination of epilepsy-specific self-management—which would include epilepsy-specific knowledge and skills related to seizures, medication and treatments, safety, and comorbid conditions—with chronic care management, which would include knowledge and skills related to maintaining a healthy lifestyle and behaviors, actively partnering with a health care team, and living independently see Table The committee recognizes that because of the diverse nature of the epilepsies, some people with epilepsy will need more educational assistance than others.
Figure depicts how different severity levels of seizures and comorbidities could be linked to different levels of education and resources. Epilepsy-specific education may meet the needs of people with mild forms of epilepsy or those who are mildly compromised—people who may be seizure-free and have no associated comorbidities or those with occasional seizures or mild comorbidities. However, individuals who are seriously compromised—those with uncontrolled seizures and severe comorbidities—will have much greater resource and educational needs.
These individuals and their families will need comprehensive education that would include both epilepsy-specific and chronic care self-management program elements. Linking seizure frequency and comorbidity severity to self-management education and community resources and services. Some moderately compromised adults also might benefit from both epilepsy-specific education and chronic care programs, such as the CDSMP.
A possible benefit of this combined approach, which could be tested through research, is that some somatic comorbidities associated with epilepsy, such as cardiovascular disease, diabetes, and osteoporosis Chapter 3 , could be improved through participation in a generic chronic care program. The committee's vision for optimal patient and family education and outcomes is depicted in Figure The education side of the model includes three major domains—knowledge, self-management, and self-determination—and the corresponding indicator areas necessary for optimal patient and family education.
The indicator areas define a combination of knowledge, perceptions, tasks, and skills that can be used to measure the efficacy of education programs. Education for people with epilepsy and their families to promote optimal outcomes. Reprinted with permission from John Wiley and Sons.
Growing Up with Epilepsy: A Practical Guide for Parents
Because there is not a direct cause and effect between the quality of patient education and health outcomes and because health outcomes can be affected by a complex array of factors, the committee concentrated on outcomes more directly related to education. Therefore, the outcomes side of the model focuses on those that can result from optimal education: access to and use of community resources, psychosocial adjustment, and patient-centered outcomes.
Corresponding indicator areas define a range of desirable services and patient outcomes. For example, educational programs focusing on self-management and self-determination would prepare people to take advantage of community resources, such as support groups and educational services; similarly, educational programs focusing on increasing knowledge about treatment would help individuals set and monitor epilepsy management goals.
Thus, the outcome indicators are important measures of the success of educational efforts. Designing educational programs to achieve optimal outcomes requires consideration of the characteristics of program participants, such as health literacy, cultural diversity, age and developmental stage, cognitive ability, severity of disease, and gender. Over the course of its work, the committee identified and reviewed the literature base documenting the general information needs of people with epilepsy and their families. In addition to these gaps in research, this chapter highlights several important points about education for people with epilepsy and their families:.
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.
For this 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 general 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. 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 committee 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. 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 perimenarche Klein et al.
Because of hormonal fluctuation, some women have a cyclic pattern of seizure frequency associated with their menses that often is unrecognized Pennell and Thompson, Centers for Medicare and Medicaid Services' Toolkit for Making Written Material Clear and Effective described later includes a useful section on the limitations of using some of the common readability assessment tools in evaluating health education materials CMS, b. Box contains a list of examples of existing epilepsy-related websites as of March Due to the dynamic nature of the Internet, websites and website content will change over time.
The self-determination theory is based on the premise that internal and external motiva-tors exist and have varying roles in and influence on individual and social development Deci and Ryan, A variety of seizure diaries and tracking tools are available online and through epilepsy organizations. Developed by R. Mittan and formerly known as the Sepulveda Epilepsy Education program.
The SEE program has recently been revised for children with epilepsy and their families; a pilot study showed promising results Shore et al.
- Professional Verification: A Guide to Advanced Functional Verification (IFIP Advances in Information and Communication Technology).
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- Premier Care Pediatrics Patient Information: Epilepsy: Resource List.
- Educating People with Epilepsy and Their Families - Epilepsy Across the Spectrum - NCBI Bookshelf?
In the context of epilepsy, self-efficacy theory stresses the importance of an individual's belief that he or she can successfully manage the challenges of the condition, and it is an important underpinning for self-management programs that affects many aspects of how people think, feel, and act. Turn recording back on. National Center for Biotechnology Information , U. Search term. 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, A large telephone survey of U.
Spanish-speaking adults found a similar lack of information about epilepsy and many misperceptions about the causes of seizures, beliefs that people with epilepsy were dangerous, and the use of unconventional treatments such as vitamins, herbal remedies, and spiritual healing Sirven et al. According to Paschal and colleagues , lack of knowledge and misperceptions about epilepsy in the African American community increase the stigma burden on African Americans with epilepsy.
Moreover, people with epilepsy reported they had to spend a substantial amount of time teaching family members about their disorder. Knowledge Needs of All People with Epilepsy and Their Families The literature indicates that all individuals with epilepsy and their families need to receive some level of education about the disorder, especially as it relates to each person's specific diagnosis and treatment plan. 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.
Jurasek and colleagues believe these youth need to be knowledgeable about the following: Epilepsy management—Knowledge about their specific epilepsy condition e. 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 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 having a seizure in public Fisher, Gender-Specific Needs The predominant knowledge needs of women and men with epilepsy are summarized in Box Knowledge Needs of Older Adults The education needs of older adults with epilepsy, their family members, and other caregivers are poorly understood and underexplored Martin et al. Education Needs of Parents and Other Caregivers Research demonstrates that families of children with epilepsy function less well, experience more problems in parent-child relationships, and show more maternal stress and depression than families of children with other chronic conditions Rodenburg et al.
Needs of People with Seizure-Like Events In many cases, seizure-like events include symptoms very similar to the seizures associated with epilepsy, but occur without the electrophysiological changes associated with epilepsy seizures Carton et al. Closing Knowledge Gaps In general, the committee found substantial evidence that people with epilepsy, their families, and caregivers want more information than they currently receive and that they want to be educated in a manner that best meets their specific situations see discussion below.
Timing, Format, and Delivery of Epilepsy Education Timing Few studies have investigated how epilepsy information should be provided, and most such studies were conducted in the United Kingdom. Format and Delivery Little evidence is available on the best format for education, with the exception that educational materials and information need to be customized to meet individual needs and circumstances, regardless of whether they are presented orally or in writing Couldridge et al.
Health Literacy Considerations for Educational Resources Written materials, which are often used to augment a clinical encounter, can be an effective, inexpensive, and easy-to-implement strategy to improve patient and family understanding of a condition or its treatment Arhan et al. Tools to accomplish this have been developed for hospitals, health centers, and pharmacies. ODPHP, Sources of Information for People with Epilepsy and Their Families Most parents navigate [the care] process with very little information. 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.
There is wide variation among the types of data that can be collected from websites, such as time spent on a page, bounce rate, number of pages per visit, and referral websites. Average visits per month to the various websites ranged from approximately 1, to more than ,, with the most-visited site being geared toward general information for a broad audience. Search engines are the largest source of traffic for many of the sites, in a number of cases representing approximately two-thirds of referrals.
Websites that are able to track how many visitors they receive through social media and visitors using mobile devices noted an increase in traffic from these sources over time. Keyword searches and the most-viewed pages vary from one site to another depending on the site content and its audience, for example:. General terms and page topics, such as epilepsy, seizure types, and treatment e. Topics related to quality of life, family and caregiving, and schools were popular for users of websites that target families of people with specific epilepsy syndromes.
When available, patient-oriented tools and resources, such as seizure first aid, seizure diaries, seizure action plans, and medication information, were popular with users. Take advantage of the Internet's capacity to provide choices and additional information in various forms e. Use the most widely accessible formats e. Engage in iterative testing. Eichner and Dullabh, ; IOM, There is a wealth of reliable and accurate information available online for individuals and their family about the epilepsies.
Greater attention to health literacy and concepts of clear communications is needed when developing web content. Greater attention to the needs of target audiences is necessary to ensure they are able to find the information they want and need. Innovative strategies to convey information that is engaging, user friendly, and action oriented and that provides links to other epilepsy resources need to be explored and implemented. Epilepsy organizations can take advantage of communications opportunities offered by online communities, social networking, and the increasing use of mobile devices when possible.
Opportunities to Improve Information Delivery The committee has identified the need for more research to guide the delivery of patient and family education in epilepsy. 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.
Programs for Children and Their Families In its review of the literature, the committee determined that educational programs for children and their families were generally intended to increase knowledge about epilepsy; improve skills in self-management, communication about epilepsy to others, and developmental tasks e.
Programs for Adults Relatively few evaluations of epilepsy-specific educational programs for self-management were found for adults. Educational Programs for Seizure-Like Events Although literature reviews show few assessments of educational interventions for seizure-like events that are determined to not be epilepsy Martlew et al. Health Literacy Considerations for Educational Programs Clear communication about health-related topics not only helps those who have low health literacy, but can benefit everyone. Although the overall strength of evidence supporting specific design features was low in part because of the diversity of interventions , the following features seemed to improve the comprehension of low-literacy populations: presenting essential information by itself,.
Next Steps for Epilepsy Education Programs Despite the paucity of epilepsy education program evaluations, the committee was encouraged that all of the programs that were tested documented significant improvements in at least one outcome.
Diabetes Self-Management Education Diabetes educators are a model for the provision of condition-specific health education by a health professional and are certified by the National Certification Board for Diabetes Educators. Educational Needs Across the Spectrum The committee recognizes that because of the diverse nature of the epilepsies, some people with epilepsy will need more educational assistance than others.
FIGURE Linking seizure frequency and comorbidity severity to self-management education and community resources and services. 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 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 preferences is lacking, especially across diverse populations. Relatively few epilepsy-specific self-management programs have been developed and tested, and none have been replicated.
All of the programs have demonstrated some positive outcomes, and newer programs show much promise in improving options for the delivery of patient and family education. Studies comparing the effectiveness of generic chronic care versus epilepsy-specific education programs individually and in combination are needed. The use of the Internet presents many potential opportunities to expand the reach and sophistication of epilepsy education programs, enabling them to respond to the needs of individual learners of different 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 provide individuals, families, and caregivers with accurate information and education to build the skills needed to achieve optimal self-management.
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