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107doien, there are those who have a catastrophic pattern inich seizures persist and can occur so frequently that theruption of their life by seizures becomes the norm.

ducation andupport of Parentsore et al2 have certainly added much to our understandingthe psychsocial needs of families of children with epilepsy.their studies of children with new-onset seizures, theirults showed that when a child is diagnosed with epilepsy,rents need information and support, and their needsould be assessed at every encounter.2 McNelis et al3 further

of children with long-standing or intractable seizures.Certainly, early on in the diagnosis we can educate parents

about epilepsy. We teach them about the treatment options,instruct them on how to handle a seizure, offer suggestionson how to talk to the child, dispel myths, and offer advice ondealing with schools and family members. We try to makethem feel confident in their ability to help their child. How-ever, when it becomes obvious that they are not respondingtomedications, we need to start to prepare them for the rigorsof intractability. We can help them make decisions aboutdietary treatments, stimulation therapies, and surgical solu-tions. We answer all their questions and provide as muchinformation as we can. In some cases, we can connect themwith another family to learn about it from their perspective,but when the seizures are not responding to any therapy,when the child is constantly being hospitalized, and whencomorbid issues are more problematic and their lives become

m the Comprehensive Epilepsy Program, Brain Institute, Miami Chil-drens Hospital, Miami, FL.dress reprint requests to Patricia Dean, ARNP, MSN, Comprehensiveounseling of Parents of ahild With Uncontrollabletricia Dean, ARNP, MSN

This review deals with the problem of couepilepsy. The previous topics address thetreatment options available both mainstreamsons for intractability or the reasons for treahealth care professional in trying to help fambasis. There is no greater challenge for the eof patients. How do we help the parents of chbe able to eliminate seizures, we can be accefamilies develop strategies, skills, and resosituation more effectively.Semin Pediatr Neurol 18:209-212 2011 El

hildhood-onset epilepsy can range from a mild inconve-nience to a catastrophic illness. Some children will out-

w their seizure disorder, some will have excellent seizurentrol, some will have occasional breakthrough seizures,d some will become intractable. Population-based studiesicate that at least 50% of childhood-onset epilepsy goeso remission.1 So, although a large percentage of childrentgrow their epilepsy, it is just the beginning for many of along experience for them and their families. What thismoall

Epilepsy Program, Brain Institute, Miami Childrens Hospital, 3100 SW62nd Avenue, Miami, FL 33155. E-mail: Pat.Dean@mch.com

1-9091/11/$-see front matter 2011 Elsevier Inc. All rights reserved.:10.1016/j.spen.2011.06.008izures

g parents of children with intractablelexity of the pathophysiology and thealternative. However, knowing the rea-failure may be insufficient to guide thedeal with this problem on a day-to-dayy professional than caring for this groupwe cannot help? Although we may notand listen openly. We can try and helpthat empower them to manage their

Inc. All rights reserved.

amined the needs of children and parents through a qual-tive focus group design and learned that these needs weregoing and changed with time. Some of their studies fo-sed on the benefit of educational interventions for fami-s.4,5 Their work has shown us that we need to explorerental concerns and fears on an ongoing basis, continuallyessing their knowledge deficits and addressing them. Al-ugh these studies offered us some insight into howwe canlp parents, the groups they studied were children withre and more disrupted, it gets harder to know how toeviate their concerns and meet their needs.

209

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210 P. Deanhe Problems of Chronicityd Seizure Recurrence

e parents of a child with a chronic condition have to copeth the burden of daily care related to the illness and thenstant demands of the chronic condition.6 When theronic condition is epilepsy, the social stigma associatedth the condition and the loss of sense of mastery experi-ced by the parents of these children contribute to long-m family stress and affect family adjustment.7,8 They needquickly learn how to respond to a crisis situation anddify their lifestyle to accommodate the emotional andysical needs of their child.9 Although we may be able toch them how to respond to the crisis, it is a much moreuous task to know how to counsel them on how to livey to day with this frightening and often devastating condi-n.In an exploratory study of seizures in infants and youngildren, Aych et al10 interviewed the parents of 31 childrenth a seizure disorder under the age of 5 years. Most of theseilies found the onset of seizures frightening and difficult.er that initial period, parents of children with well-man-d seizures were able to resume a normal parenting pat-n. In contrast, parents of children with severe and a highquency of seizures experienced a much more challengingd adverse situation that resulted in high stress levels andntinuous disruptions in daily routines.10

Having a child with any chronic illness alters the lives ofparents and ultimately changes the dynamic of the family.

cause of the nature of seizures and their unpredictability, iteven harder for families to adapt. Although it is a chronicorder, it has a recurrent course. There are repeated crisisth periods of remission in between. Once a seizure is over,y begin to worry about when the next one will occur.rents of children with intractable epilepsy live in a state ofntinuous anxiety, knowing that another seizure will occurt not knowing when.

arental Stress inarents of Childrenith Continuing Seizuresven the episodic nature of epilepsy, parents of childrenth epilepsy are naturally at high risk for increased parentaless.11,12 Although this seems like an obvious conclusion, itan important area for study because increased stress cangatively affect parenting.13 Although multiple factors canrease parenting stress, it is logical that the persistence ofzures despite treatment would surely be the main reasonthis stress. Studies on the cause of parental stress in epi-sy tend to include comorbidities as a major contributingtor. This may be because a large majority of children withractable epilepsy have behavior, attention, developmental,d or learning problems. In a study of this patient popula-

n, it is almost impossible to find a significant number ofildren without one of these variables. It is also equally hard

ofttheparents to make the distinction of the effect each one hastheir stress level.A Dutch study looked at predictors of parenting stress andrenting in children with enduring epilepsy by giving ques-nnaires to 91 parents. The children were between the ages4 and 18, and they excluded children with an IQ70. Theildren had various seizure types, and there was an equaltribution of seizure frequency of daily (22%), weekly.3%), monthly (26.4%), and yearly (24.2%). Results weret stressors, resources, and parental coping behaviors weresignificant contributors to parenting stress. The factorst were found to increase parenting stress were childsctional status, difficult child temperament, parental de-ssion, and emotional focused coping behaviors. They didt discuss in the study what effect seizure frequency had onilds functional status. In fact, functional status seemed tomore reflective of behavior related issues.13 Wirell et al14

stulated that intractable childhood epilepsy is associatedth markedly increasedmaternal parenting stress. Althoughir population consisted of children with intractable epi-sy and frequent seizures, they suggested that stress wase to predominantly child factors rather than epilepsy vari-les. Buelow et al15 studied the stressors of parents of chil-n with seizures and intellectual disabilities through struc-ed interviews. She found that the parents of these childrenperienced numerous stressors, different from parents ofildren with just seizures or just intellectual disabilities. Shenot discuss what part the seizures or intellectual disability

ntributed to the level of stress in the parents.15 Cushner-einstein et al16 found that uncertainty about parenting asll as having a child with depression or learning disabilitiesntributed to stress in parents of children with seizures. In ady to examine the relationship between parental anxietyd quality of life in pediatric patients with ongoing epilepsy,illiams et al17 found that the families most vulnerable touced quality of life are those in which a child has poorlyntrolled epilepsy, comorbid disabilities, and increased pa-tal anxiety. Kopp et al18 studied a cohort of children witherous sclerosis. They found that increased parentingess was related to the presence of current seizures, a historypsychiatric diagnosis, low intellectual/adaptive abilities,d behavior problems in the child.

ther Sourcesf Parental Stresse problems associated with uncontrolled seizures go faryond the medical and psychological management issues.e studies referenced focused onmore internal componentst contributed to increased stress in parents (ie, the sei-res, the childs functionality, and parental emotions). Theynot account for all the external stressors involved in hav-a child with uncontrolled epilepsy. They do not describereal-life situations that are equally as problematic. There

constant fear for the safety of their child, so much so that

en the child sleeps with one or both parents, putting fur-r stress on a marriage. If the child is a frequent fitter,

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Children with uncontrollable seizures 211rents might have to leave work frequently to pick up theild from school, which can create stress about job security.e cost of medications and frequent copays can be a sourcefinancial stress in some families. Often there are parentalncerns about not meeting the needs of their other children.hool issues including learning and memory problems re-iring long hours doing homework can also contribute tonegative impact of uncontrolled epilepsy on a family.

ow to Help These Familiese aforementioned studies suggest that parents with betterping skills have less stress and improved psychosocial out-mes, but there are no specific interventions that have beendied that focus on improving the coping strategies of theserents. The standard interventions for parents of childrenth epilepsy consist of giving information pertaining to thenagement of symptoms or increasing knowledge of thezures. Although no specific intervention design was dis-ssed in the former studies, in the course of their research,y found things that either parents themselves said or ob-vations they made by speaking to the parents that theylieved could help reduce parental stress and help thempe better (Table 1).Some of the authors studies suggested counseling andreased access to mental health care. We need to carefullyess our families and refer them to psychological and psy-iatric help. Sometimes parents are so focused on the childt they totally ignore their own well-being, and we need tocourage them to take care of their own needs. If the childuld benefit from mental health services, we need to share

le 1 Observed Interventions that Reduce Parental Stress

tch et al Opportunities to talk to other parents withseizure disorders were helpful

Using the Internet to communicate withother parents who shared similarexperiences

denburget al

Presence of social support reducedparenting stress

rrell et al CounselingMarriage counselingParent support groupsOnline communities and chat groupsChild care to give mothers some respite

ulow et al One way to improve family functioning anddecrease parent stress might be to helpparents improve their support system

lliamset al

Respite careParent support groupsIncreased education about seizure risksand psychosocial development

Greater access to mental health servicespp et al Psychological counseling and behavioral

management if their child has frequentseizures and is diagnosed with MR, or2.presents with psychiatric or behavioraldifficultiess with the parents. Sometimes parents feel that they shouldable to control their childs behavior. We need to let themow that it is not about their parenting, and they need helpmanage their childs behavior. Although this is an opti-m solution in many situations, it is not always possiblecause of financial constraints or lack of services in the areawhich the family lives. So we need to look at other ways tod support for them. A recommendation made by severals improved support systems and parent support groups.rents themselves stated how it helped talking to anotherrent. This can be achieved by referring families to the con-mer organizations, like the Epilepsy Foundation or Tuber-s Sclerosis Alliance. These groups offer parents the abilityconnect with people with shared life experience. Ofteny have local affiliates or chapters and have scheduled sup-rt groups. If a family is not in an area where there is one,y can connect online. We should counsel families to talkother parents. We cannot be all things to our patients. Thet is that they need all the help they can find. Other parentschildren with intractable epilepsy can help in ways that wenot. They can offer their experience and frequently directrents to the help they need for the nonmedical issues. It isre parents learn new coping strategies and realize they aret alone. After all, they know more about living with un-ntrolled seizures and the comorbid conditions than we do.Interventions need to focus on teaching parents ways toal with the chronic uncertainty associated with epilepsy.erventions should also include strategies for not only deal-with the daily management of a seizure disorder but alsow to deal with a child with comorbidities.9 We are often soncerned about the seizures that we put less emphasis oncomorbidities. The previously described studies suggestt these problems can overshadow the frequent seizures.rhaps this should be the main focus of our educationalgrams.What clinicians can do is evaluate the families experienceth the childs epilepsy and find common ground regardingmanagement of the condition. Because decreased satis-

tion with care can only increase the burden on the family,should do all we can to not add to an already difficult

uation. We should encourage them to ask questions andlude them in the decision making regarding their childsatment.19 Often we have taken care of these children forny years and have witnessed the disappointment theserents have endured when putting their hopes in anotherled treatment. So, we continue caring for the child, ad-ssing their concerns, giving honest answers to their ques-ns, and offering hope when we can. We cannot fix theirild, and we cannot solve all their problems, so it is impor-t for us to be accessible and simply be good listeners,eone with whom they can share their frustrations.15

ferencesCamfield P, Camfield C: Epileptic syndromes in childhood: Clinicalfeatures, outcomes and treatments. Epilepsia 43:27-32, 2002

Shore C, Austin J, Musick B, et al: Psychsocial care needs of parents ofchildren with new-onset seizures J Neurosci Nurs 30:169-174, 1998

3. McNelis AM, Buelow J, Meyers J, et al: Concerns and needs of childrenwith epilepsy and their parents. Clin. Nurs Spec 21:195-202, 2007

4. Austin JK, McNelis AM, Shore CP, et al: A feasibility study of childrenwith epilepsy. J Neurosci Nurs 34:30-37, 2002

5. Shore CP, Perkins SM, Austin JK: Seizures and epilepsy education(SEE) program for families of children with epilepsy: A preliminarystudy. Epilepsy Behav 12:157-164, 2008

6. Wallander JL, Varn JW: Effects of pediatric chronic physical disorderson child and family adjustment. J Child Psychol Psychiatry 39:29-46,1998

7. Austin J, McDermott N: Parental attitudes and coping behaviors infamilies of children with epilepsy. J Neurosci Nurs 20:174-179, 1998

8. Seidenberg M, Berrent S: Childhood epilepsy and the role of psychol-ogy. Am Psychol 47:1130-1133

9. Duffy L: Parental coping and childhood epilepsy: The need for futureresearch. J Neurosci Nurs 43:29-35, 2011

10. Aych LS, Hammond R, White C: Seizures in infants and young chil-dren: An exploratory study of family experiences and needs for infor-mation and support. J Neurosci Nurs 33:278-285, 2001

11. Hoare P, Kerley S: Psychsocial adjustment of children with chronicepilepsy and their families. Dev Med Child Neurol 33:201-215, 1991

12. Carlton-Ford S, Miller R, Nealeigh N, et al: The effects of perceivedstigma and psychological over control on the behavioural problems ofchildren with epilepsy. Seizure 6:383-391, 1997

13. Rodenburg R, Meijer AM, Deovic M, et al: Parents of children withenduring epilepsy: Predictors of parenting stress and parenting. Epi-lepsy Behav 11:197-207, 2007

14. Wirell EC, Wood L, Hamiwka LD, et al: Parenting stress in mothers ofchildren with intractable epilepsy. Epilepsy Behav 13:169-173, 2008

15. Buelow JM, McNealis A, Shore CP, et al: Stressors of parents of childrenwith epilepsy and intellectual disability. J Neurosci Nurs 38:147-154,2006

16. Cushner-Weinstein S, Dassoulas K, Salpekar JA, et al: Parenting stressand childhood epilepsy: The impact of depression, learning, and sei-zure related factors. Epilepsy Behav 13:109-114, 2008

17. Williams J, Steel S, Sharp GB, et al: Parental anxiety and quality of lifein children with epilepsy. Epilepsy Behav 4:483-486, 2003

18. Kopp CMC, Muzykewicz DA, Staley BA, et al: Behavior problems inchildren with tuberous sclerosis complex and parental stress. EpilepsyBehav 13:505-510, 2008

19. Ryan BL, Speechley KN, Levin SD, et al: Parents and physicians Per-ceptions of childhood epilepsy. Seizure 12:359-368, 2003

212 P. Dean

Counseling of Parents of a Child With Uncontrollable SeizuresEducation and Support of ParentsThe Problems of Chronicity and Seizure RecurrenceParental Stress in Parents of Children With Continuing SeizuresOther Sources of Parental StressHow to Help These FamiliesReferences