Epilepsy & Behavior 34 (2014) 1–5

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Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh

Childhood-onset primary generalized epilepsy — Impacts on children's preferences for participation in out-of-school activities Batya Engel-Yeger a, Sharon Zlotnik b, Sarit Ravid c, Eli Shahar c,⁎ a b c

Department of Occupational Therapy, Faculty of Social Welfare and Health Sciences, University of Haifa, Haifa, Israel Department of Occupational Therapy, Rambam Medical Center, Rappaport School of Medicine, Haifa, Israel Child Neurology Unit & Epilepsy Service, Meyer Children Hospital, Rambam Medical Center, Haifa, Israel

a r t i c l e

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Article history: Received 16 September 2013 Revised 16 February 2014 Accepted 19 February 2014 Available online 22 March 2014 Keywords: Children Primary generalized epilepsy Participation Daily activities

a b s t r a c t The purpose of this study was to compare preferences for participation in out-of-school activities between children with childhood-onset primary generalized epilepsy and their healthy peers. Overall, participants were 56 children aged 6–11 years. The study group included 26 children with childhood-onset primary generalized epilepsy. The controls were 30 healthy children. Parents of all participants completed a demographic and health status questionnaire. All children completed the Preference Assessment of Children (PAC) that profiles the out-of-school activities the child wishes to participate in. Scores are calculated for five activity types, namely, recreational, active physical, social, skill-based, and self-improvement and for two domains of formal and informal activities. Children with generalized epilepsy showed a similar preference for participation in out-of-school activities as did their healthy peers. The study group showed a lower preference for participation in social activities but showed a higher preference for participation in self-improvement activities. In both groups, younger children (aged 6–8 years) showed a lower preference for participation in most PAC scales. Older children (aged 9–11 years) showed a higher preference for participation in social activities. Difference between genders was close to being statistically significant in the skill-based activities (F1,21 = 3.84, p = .06), where girls showed a higher preference compared with boys. Intervention policies need to be undertaken in order to encourage children with epilepsy to participate in activities together with their healthy peers, aiming to enhance the well-being of children with primary generalized epilepsy. © 2014 Elsevier Inc. All rights reserved.

1. Introduction Epilepsy is a common neurological disorder characterized by a tendency to develop recurrent seizures and is commonly defined by two or more unprovoked seizures [1]. Epilepsy in children, including generalized epilepsy, is known to have several comorbidities, including motor [2], cognitive, and language deficiencies [3], and each of them may have substantial social, physical, and psychological consequences on a child's performance and participation [4]. Participation, defined as an experience through which we acquire skills and competencies, connect with others, and find purpose and meaning in life [5], is receiving greater attention in health practice and theory. The conceptual model the World Health Organization International Classification of Functioning Disability and Health (ICF) [4] emphasizes that health is no longer narrowly equated with medicine, and ⁎ Corresponding author at: Child neurology Unit & Epilepsy Service, Rambam Meducal Center, Haifa, Israel Tel.: +972 4 8543059; fax: +972 4 8543405. E-mail address: [email protected] (E. Shahar).

http://dx.doi.org/10.1016/j.yebeh.2014.02.021 1525-5050/© 2014 Elsevier Inc. All rights reserved.

body dysfunctions are no longer seen as only determining disability [6]. One of the important factors of participation is activity preference [7], since participation can lead to the development of stronger interests [7,8]. These preferences are influenced by factors such as age, exposure to opportunities, proficiency, and enjoyment level [5,9]. Meaningful participation is known to be essential for psychological and emotional well-being, skill development, life satisfaction, and competence [10]. Participation enables children to explore their social, intellectual, emotional, communicative, and physical potential and is an important predictor of future life satisfaction [11]. Studies highlight that children with disabilities are at increased risk of limited participation in everyday activities [12,13] and tend to engage in less varied leisure activities. Their participation is manifested by a greater frequency of quiet recreation activities and fewer social activities [14,15]. Their social isolation and loneliness also impact their preference for activities [16–18]. Studies dealing with epilepsy in childhood indicate that in addition to the medical impacts of epilepsy, with respect to loss of control, drug effects [19], and comorbidity, epilepsy has a marked impact on a

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B. Engel-Yeger et al. / Epilepsy & Behavior 34 (2014) 1–5

child's life [20]. Population-based studies emphasized that 70–76% of children with epilepsy have some type of disability and higher rate of daily stressors affecting their daily lives and choices [21–23], and noted that children with epilepsy aged 5–17 years participated in fewer group and total sports activities as compared with their healthy peers. The authors stressed the negative outcomes of that limited participation and highlighted the relation between reduced participation in sports activities and children's obesity. Gordon et al. [24] added that even if people with epilepsy show similar types of leisure activities as do their healthy peers, those with epilepsy tend to choose to be involved in specific kinds of activities. For example, in the physical activities, it was noted that Canadian people aged 12–39 years who suffered from epilepsy were more likely to use walking as a leisure physical activity and were less likely to be involved in ice hockey, weight training, and home exercise compared with healthy controls. At present, data concerning participation of children with epilepsy and specifically those with childhood-onset primary generalized epilepsy are still scarce. Most studies refer to participation in a specific type of activity (social activity or sports activity) but lack the vast perspective on participation as expressed in other activity types. The purpose of the present study was to compare the activity preferences of children with childhood-onset primary generalized epilepsy with those of typically developing peers. 2. Methods 2.1. Participants Fifty-six children, aged 6–11 years, participated in this study. The study group included 26 children with childhood-onset primary generalized epilepsy (17 boys and 9 girls; mean age = 8.52 ± 1.59), who were referred to the neurological service at Mayer's Children Hospital, Rambam Medical Center, Haifa, Israel. All were members of a twoparent family belonging to the middle class socioeconomic status. The diagnosis of primary generalized epilepsy was based on the clinical presentation of generalized seizures along with generalized epileptiform discharges recorded on the electroencephalography (EEG) fulfilling the criteria of the International League against Epilepsy [25]. The seizures in all children receiving antiepileptic therapy, mainly valproic acid alone at lower effective doses, were controlled. Children's cognitive level was within normal limits. Additional chronic illnesses were not recorded in the study group. The children studied in elementary schools in their community. Twenty-five children studied in the regular education system, and one child studied in a school for special education. However, the IQ level of all children was in the normal range. Most parents were born in Israel (80% of the fathers and 85% of the mothers). The control group included 30 healthy children (21 boys and 9 girls; mean age = 8.43 ± 1.63) with normal development, who were matched to the study group by age, gender, and living area. Thus, both groups shared similar facilities for out-of-school activities. The controls were recruited by an advertisement that called for participating in a study about children's patterns of participation in out-of-school activities. Children with either established neurological disorders or learning disabilities were excluded. All participants were divided into two age groups: 6–8 years and 9–11 years. In the study group, the younger age group included 12 children, and the older age group included 11 children (3 cases were missing). In the control group, the younger age group included 17 children, and the older age group included 13 children. 2.2. Instruments 2.2.1. Neurological assessment of children with epilepsy Neurological assessment includes a complete neurological examination; global developmental milestones including cognition, surface, and sleep-deprived EEG; and additional neuroimaging techniques including

computerized tomography (CT), magnetic resonance imaging (MRI), and positron emission tomography (PET) if required. 2.2.2. Demographic questionnaire Demographic questionnaire included data on a child's age, gender, family sociodemographic level, health status, medications, treatments, and physiotherapies. 2.2.3. The Preference Assessment of Children (PAC) [8] The Preference Assessment of Children evaluates children's preferences for participation in out-of-school activities with no relation to whether the activities are actually performed. Each activity is drawn on a card. The card also includes a phrase (in words) describing the activity. Scores are obtained for five activity types derived through factor analysis of participation preference data: recreational, active physical, social, skill-based, and self-improvement/educational scales. Two scores are also provided for two separately evaluated domains — formal and informal. The formal domain includes structured activities that involve rules or goals and that have a formally designated coach, leader, or instructor (e.g., taking art lessons, learning to dance, swimming, and getting extra help for schoolwork from a tutor). The informal domain includes activities that have little or no planning and often are initiated by oneself (e.g., reading, hanging out, and attending a party). The child sorts the cards into three piles according to how much he/ she prefers to do the activity as follows: (1) really likes to do, (2) sort of likes to do, and (3) does not like to do. The preferences do not necessarily refer to activities that are actually performed. Mean scores are calculated for each activity type, for each domain, and for the PAC total score ranging from 1 to 3. Preliminary assessments of the PAC have demonstrated sufficient internal consistency, test–retest reliability, and validity [8]. 2.3. Procedure The Ethical Committee of Rambam Medical Center approved the performance of this study. When visiting Mayer's Children Hospital, Rambam Medical Center, Haifa, parents were asked to complete the demographic/health status questionnaire. Meanwhile, the children completed the PAC. In the control group, parents, who responded to the advertisement calling to participate in this study, were asked to complete the demographic/health status questionnaire with the data collector in a phone conversation. Another meeting with the children who answered the inclusion criteria in their homes was performed. Each child completed the PAC in a quiet room in the presence of the data collector. 2.4. Data analysis Descriptive statistics were used to describe children's demographic data and PAC scores. A multivariate analysis of variance (MANOVA) with the general linear model examined the significance of difference between the study groups, the age groups, and the genders in PAC scale's scores. T-test examined the difference between groups in PAC total score. Probabilities below .05 were considered significant. 3. Results The comparison of both groups revealed that children with generalized epilepsy showed a lower preference for participation in social activities (F1,49 = 4.52, p = .04) and a higher preference for participation in self-improvement activities (F1,49 = 4.99, p = .03) compared with the controls (Table 1). Age group effect was found in the social activities (F1,49 = 10.34, p = .002). In both groups, younger children (aged 6–8 years) showed a lower preference for participation in most PAC activities. However, the difference between the age groups was significant only in the

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Differences between groups were found in social activities — the study group showed a lower preference for participation in these activities compared with the controls. This result supports the study of Jakovljević and Martinović [28], who reported reduced sociability among children with multiple generalized seizure types aged 11–18 years. Studies raise several reasons for the reduced social participation of children with epilepsy. First, seizures cause children to lose school days [29]. Second, factors such as elevated anxiety (due to stress related to seizure clusters) also enhance their avoidance from social events. Third, drug side effects may contribute to stigma and social solitude. Clinicians should refer to these impacts and also pay attention to age effects, since the reduced social participation of children with epilepsy may get worse with age and impair the child's physical and emotional quality of life [29]. Social participation is also crucial for integrating children with epilepsy in the community. Community participation and meaningful rewarding activity are major goals in models of rehabilitation [30]. Along these lines, Cushner-Weinstein et al. [31] found that a designed camp for children with epilepsy improved their social interaction, responsibility, and communication. Hence, understanding the activity preference of children with epilepsy may assist in creating community activities that would fit their specific needs and enhance their inclusion with their healthy peers. In the present study, children with epilepsy showed a higher preference for participation in self-improvement activities. Self-improvement activities include quiet activities, such as writing letters, reading, and doing homework, which are usually performed at home and alone. The selection of quiet activities may be one way children manage or deal with the side effects of medications [29]. Children may find more confidence and sense of control when participating in these activities in a relatively protective environment as their home. Nevertheless, self-improvement activities also include activities performed in the community, such as going to the library, doing volunteer work, and shopping. It may be suggested that the higher preference for participation in such activities also represents the children's desire to be involved in the community and to enjoy the benefits of public places. The results have demonstrated that among the children with epilepsy, the girls showed a higher preference for participation in skillbased activities than did the boys. This result supports the reports of King et al. [32] and Law et al. [13] on children with physical limitations. However, this interpretation should be further studied, since the difference between genders was not significant. Moreover, information about this issue among children with epilepsy is scarce and not necessarily consistent with the present study results. For example, Jakovljević and Martinović [28], who evaluated children with epilepsy aged 11–18 years, found that girls demonstrated greater problems with social competence than boys. Additional studies with larger

Table 1 Comparison of PAC scores between children with generalized epilepsy and healthy peers. Controls (n = 30)

F1,49; T51

Mean

SD

Mean

SD

1.61 1.76 1.56 1.54 1.55 1.56 1.75 1.71

.31 .32 .33 .43 .47 .41 .37 .32

1.61 1.81 1.54 1.53 1.51 1.36 1.78 1.91

.27 .41 .25 .32 .39 .23 .47 .42

T F F F F F F F

= = = = = = = =

.54 .93 .07 .08 .28 4.52⁎ .45 4.99⁎

⁎ p ≤ 0.05.

social activities — the older children (aged 9–11 years) showed a higher preference for participation in social activities than did the younger children. This was found for the study group (F1,21 = 4.51, p = .04) (see Fig. 1) and for the controls (F1,28 = 5.97, p = .02) (see Fig. 2). Among the study group, difference between genders was on the verge of being significant in the skill-based activities (F1,21 = 3.84, p = .06), where the girls showed a higher preference (mean = 1.55 ± .33) than did the boys (mean = 1.86 ± .36).

4. Discussion The present study compared the activity preferences of children with childhood-onset primary generalized epilepsy with those of typically developing peers by using the PAC. The PAC provides a vast perspective about participation in out-of-school activities. We chose to conduct this study based on the importance of participation to a child's development and well-being and on the relatively limited literature about participation of children with epilepsy. In general, children with epilepsy were found to have similar preferences for participation in out-of-school activities as did their healthy peers. This supports previous reports about participation of children with physical disabilities [26,27]. Out-of-school activities included many leisure activities (such as doing crafts, reading, doing gymnastics, and hanging out) and activities performed in the community (such as participating in community organizations, going to the movies, and going to the public library). The PAC measures the child's preferences even if he/she does not actually participate in the activity. Thus, it may be postulated that children with epilepsy wish to take part in activities and to feel an integrated part of the community as do their healthy peers.

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samples may shed light on gender role on participation patterns of this population. In summary, although, in general, similarity exists in activity preferences between with children with epilepsy and their healthy peers, the differences between groups may reflect the families'/children's cautious attitude toward social situations probably out of fear of seizures or fear of being revealed to have epilepsy: The parents' perceptions are influenced by the overall atmosphere in the society and attitudes toward people with epilepsy. Moreover, participation in sports activities may be limited or even forbidden by the parents since they have fear of situations associated with a potential increased risk of seizures or with stigmatization. Further studies are needed to assess the influence of a parent's perception of a child's preference for participation in activities. Another important point is that considering the similar preferences of children and the ICF model, it is important to refer to participation in its wider implications in the evaluation and intervention of children with epilepsy [29]. Therapists should consider what the child wishes to participate in, even if it is not actually performed, and find the way to enhance the child's participation in his/her areas of interests. Such an approach may assure the optimal development of children with epilepsy and elevate their quality of life [20]. In line with the client-centered approach, collecting information directly from the child, as was performed in the present study by using the PAC, may provide a better understanding related to the child's point of view and selfexperience. This may elevate the child's involvement in intervention and assist achieving intervention goals. Service providers for children with epilepsy should consider factors that limit participation of these children, such as lack of appropriate opportunities or suitable programs, lack of physical assistance [33], and social problems with peers. Intervention should focus on providing opportunities for these children that would empower them, elevate their social interactions, reduce negative stereotypes, and enable them to become an integral part of the community [21,34]. For achieving this, a collaboration between physicians and other relevant health professions as occupational therapists, social workers, and psychologists is recommended. Intervention should also involve family members and education personnel [20]. Some limitations must be considered in the interpretations of this study's results. First, the study consisted of a relatively small, convenience sample of children. In addition, other factors that might affect the preferences of children, such as the severity of epilepsy, socioeconomic level, and parents' education, were not investigated. Larger studies that would consider the impact of personal and familial factors on the child's participation should be performed in order to enable the generalizability of the results.

5. Conclusions Medical professions should be aware that although children with epilepsy struggle with their complicated health condition and outcomes, they still wish to experience their childhood as do their healthy friends and participate in similar activities. Multidisciplinary intervention may enhance participation of children with epilepsy in daily life and, thus, encourage their development and elevate their quality of life. Conflict of interest None of the authors has any conflict of interest to disclose. References [1] Engel J. Concepts of epilepsy. Epilepsia 1995;36(s1):23–9. [2] Hernandez MT, Sauerwein HC, Jambaque I, De Guise E, Lussier F, Lortie A, et al. Deficits in executive functions and motor coordination in children with frontal lobe epilepsy. Neuropsychologia 2002;40:384–400. [3] Scabar A, Devescovi R, Blason L, Bravar L, Carrozzi M. Comorbidity of DCD and SLI: significance of epileptiform activity during sleep. Child Care Health Dev 2006;32: 733–9. [4] World Health Organization. International classification of functioning, disability and health. Geneva: World Health Organization; 2001. [5] Law M. Participation in the occupations of everyday life. AJOT 2002;56(6):640–9. [6] Imrie B. Demystifying disability: a review of the international classification of functioning, disability and health. Sociol Health Illn 2004;26(3):287–305. [7] Garton AF, Pratt C. Leisure activities of adolescent school students: predictors of participation and interest. J Adolesc 1991;14:305–21. [8] King G, Law M, King S, Hurley P, Hanna S, Kertoy M, et al. Children's assessment of participation and enjoyment (CAPE) and preferences for activities of children (PAC). San Antonio, TX: Harcourt Assessment, Inc.; 2004. [9] Larson RW, Verma S. How children and adolescents spend time across the world: work, play, and developmental opportunities. Psychol Bull 1999;125:701–36. [10] Lovell TA, Datillo J, Jekubovich NJ. Effects of leisure education on women aging with disabilities. Act Adapt Aging 1996;21(2):37–58. [11] Law M, Finkelman S, Hurley P, Rosenbaum P, King S, King G, et al. Participation of children with physical disabilities: relationships with diagnosis, physical function, and demographic variables. Scand J Occup Ther 2004;11(4):156–62. [12] Engel-Yeger B, Jarus T, Anabi D, Law M. Differences in patterns of participation between youth with cerebral palsy and typical developing peers. AJOT 2009;63(1): 96–104. [13] Law M, King G, King S, Keroy M, Hurley P, Rosenbaum P, et al. Patterns of participation in recreational and leisure activities among children with complex physical disabilities. Dev Med Child Neurol 2006;48:337–42. [14] King G, Law M, King S, Rosenbaum P, Kertoy MK, Young NL. A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Phys Occup Ther Pediatr 2003;23(1):63–90. [15] Meijer SA, Sinnema G, Bijstra JO, Mellenbergh GJ, Wolters WHG. Social functioning in children with a chronic illness. J Child Psychol Psychiatry 2002;41: 309–17. [16] Engel-Yeger B, Ziv-On D. The relationship between sensory processing difficulties and leisure activity preference of children with different types of ADHD. Res Dev Disabil 2011;32(3):1154–62.

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