Epilepsy & Behavior 41 (2014) 210–216
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Parental knowledge, attitudes, and behaviors towards children with epilepsy in Belgrade (Serbia) Tatjana Gazibara a, Jovana Nikolovski a, Aneta Lakic b, Tatjana Pekmezovic a, Darija Kisic-Tepavcevic a,⁎ a b
Institute of Epidemiology, Faculty of Medicine, University of Belgrade, Belgrade, Serbia Child and Adolescent Neurology and Psychiatry Clinic, Faculty of Medicine, University of Belgrade, Belgrade, Serbia
a r t i c l e
i n f o
Article history: Received 16 July 2014 Revised 22 September 2014 Accepted 23 September 2014 Available online xxxx Keywords: Childhood epilepsy Parents Knowledge Attitudes Behaviors
a b s t r a c t Objective: The aim of our study was to assess knowledge, attitudes, and behaviors of parents whose children were diagnosed with epilepsy. Methods: This cross-sectional study included 213 consecutive parents who accompanied their children, diagnosed with epilepsy, at regular checkups in the outpatient department of the Child and Adolescent Neurology and Psychiatry Clinic in Belgrade. Data were obtained through a questionnaire before completion of the child's neurological checkup, while clinical parameters of children with epilepsy were taken from medical records. Results: Almost all respondents knew that epilepsy is not an infectious disease (99.5%), while the least proportion of parents (31.9%) knew that epilepsy is not, for the most part, hereditary. Parents felt that their family and friends should know that their child is suffering from epilepsy (average score: 4.3 out of 5). Also, parents felt the most conﬁdent in taking care of their child during seizures (4.7 out of 5), while they felt the least conﬁdent in letting their child go on school trips for several days (3.4 out of 5). Parental longer schooling (i.e., higher education level) was an independent predictor of higher epilepsy knowledge. Taking less number of medications was an independent predictor of more supportive parental behavior towards children with epilepsy. Conclusion: Some epilepsy-related issues still require improvement in parental knowledge. Ensuring education and support at community and school levels for both parents and children with epilepsy should be the principal goal of health-care service. © 2014 Elsevier Inc. All rights reserved.
1. Introduction Public awareness and attitudes towards epilepsy differ across cultures [1–6]. It has been noted that traditional beliefs and lack of knowledge strongly inﬂuence attitudes towards epilepsy [1–3,5]. Keeping in mind that this chronic neurological disorder occurs in 0.5 to 1.0% of children under the age of 16 , we have found that the burden of epilepsy most commonly involves informal caregivers. Moreover, epilepsy in children has wide repercussion on social, emotional, and overall family functioning [8–10], particularly in families where younger children are affected and in those with single parents . It has been highlighted that parental engagement in pediatric epilepsy care in terms of communication and shared decision-making represents a crucial factor in the management of this neurological disorder . Still, young persons and their parents feel that medication management of epilepsy is the only priority in a health-care setting
⁎ Corresponding author at: Institute of Epidemiology, Faculty of Medicine, University of Belgrade, Visegradska 26A, Belgrade 11000, Serbia. Tel./fax: +381 11 3607 062. E-mail address: [email protected]
http://dx.doi.org/10.1016/j.yebeh.2014.09.062 1525-5050/© 2014 Elsevier Inc. All rights reserved.
. Although parents may face difﬁculties in family functioning , it has been observed that parental reporting of various symptoms correlates with that of the child . Speciﬁcally, analysis of agreement between children and parents indicated that there is a substantial concordance in reporting symptoms of anxiety and depression . This ﬁnding suggests that parents are able to accurately recognize and deﬁne problems their children experience. In addition, research has shown that parents were able to describe and differentiate types of seizure and their characteristics . Taking care of a child with epilepsy results in a higher amount of stress compared with taking care of a healthy child . Because of parental strain, higher level of worries, and perception of vulnerability and anxiety for the future of their children , it is possible that mothers and fathers of children with epilepsy exhibit particular emotional and behavioral patterns in terms of higher level of child protection and interpretations of their child's daily challenges. Moreover, we hypothesized that addressing this issue could reveal particular sociocultural aspects of the local community because identiﬁcation of speciﬁc misconceptions and problems of parents related to epilepsy in their children would potentially help achieve better treatment and well-being of the family as a whole and, ultimately, improve overall
T. Gazibara et al. / Epilepsy & Behavior 41 (2014) 210–216
quality of life. Therefore, the aim of our study was to assess knowledge, attitudes, and behaviors of parents whose children were diagnosed with epilepsy. 2. Material and methods 2.1. Participants In the period from June 1 to July 31, 2013, all parents who accompanied their children who were diagnosed with epilepsy at regular checkups were recruited in the outpatient department of the Child and Adolescent Neurology and Psychiatry Clinic, Belgrade. A total of 231 consecutive parents were approached, and 213 agreed to participate (response rate: 92.2%). In case that both parents came with the child for checkup, only one randomly selected parent per family was included in the survey. Diagnosis of epilepsy was made by a pediatric neurologist. Inclusion criteria for the study were as follows: being older than 18 years of age and being able to speak and understand Serbian. Exclusion criteria were as follows: having a child with intellectual and other (visual, hearing, orthopedic) impairments and having a child with diagnosed progressive neurodegenerative disorder. The survey was approved by the Institutional Review Board. The parents signed an informed consent prior to enrollment in the study. 2.2. Instrument Data were obtained through a questionnaire before completion of the child's neurological checkup, while clinical parameters of children with epilepsy were taken from medical records. The questionnaire, designed for the study, comprised 5 sections: parental sociodemographic characteristics (sex, age, marital status, education level, employment status, number of household members, parental monthly income, place of residence, and number of children in the household), demographic and clinical characteristics of children with epilepsy (sex, age, age at onset, length and quantity of pharmacotherapy, type, and frequency of seizures), knowledge, attitude, and behaviors related to epilepsy. The knowledge, attitude, and behavior sections for this questionnaire were developed using previously published studies exploring parents', caregivers', teachers' and health professionals' knowledge and attitudes on the subject [18–21]. To check the understanding and interpretation of the translated items by the Serbian population, the questionnaire was tested on ﬁve parents of children with epilepsy. Results of this pilot survey were discussed among the group of researchers and clinicians with the aim of generating a version of the questionnaire that was semantically and conceptually clear and understandable to persons who speak the Serbian language ﬂuently. Suggestions of parents who participated in the pilot survey were also implemented in the ﬁnal version of the questionnaire. The knowledge section comprised 12 items regarding age at onset of seizures (in the ﬁrst year/until age of 18/at any age) and circumstances indicative of epilepsy diagnosis (one unprovoked seizure/at least two unprovoked seizures/loss of consciousness during seizures). The following questions (offering yes/no answers) referred to whether or not epilepsy was a communicable disease or a psychiatric or a hereditary disorder as well as whether or not all persons lose consciousness during seizures and whether or not all the affected patients have similar symptoms. Additionally, the parents were asked whether the affected children may be vaccinated, have a lower intelligence quotient, and have difﬁculties with learning. The ﬁnal two questions in this section were related to the use of medication: whether or not withdrawal of seizures after the use of pharmacotherapy means that the person is cured and whether or not, after skipping therapy, double dose of medications should be taken. Each correct answer in this set of items was awarded 1 point. Therefore, the total knowledge score represented a range between 0 points as the minimum and 12 points as the maximum.
Parents' attitude was assessed by 7 statements presented in a block. Statements referred to parents' attitudes towards perceptions of their child's epilepsy by family, friends, and the community. Answers were graded using the Likert scale, where the minimal mark 1 denoted “I strongly disagree with this statement” and the maximal mark 5 denoted “I strongly agree with this statement”. The sum of marks for each statement represented the attitude score (ranging from 7 to 35). Similarly, parents' behavior in relation to their children's epilepsy was evaluated using a block of 7 statements. The statements reﬂected parental behavior in terms of ongoing seizures and their permission to let the child participate in different school and nonschool activities. Answers were graded using the Likert scale, where the minimal mark 1 denoted “I strongly disagree with this statement” and the maximal mark 5 denoted “I strongly agree with this statement”. The sum of marks for each statement represented the behavior score (ranging from 7 to 35). Additionally, the parents were asked whether or not they were familiar with epilepsy before their child was diagnosed as well as how they perceive their own knowledge of epilepsy and how they inform themselves about epilepsy-related issues. 2.3. Data analysis Attitude and behavior scores were presented as means with corresponding standard deviations (SD), skewness, and kurtosis. Skewness shows how much data weight towards one extremity of the scale. Kurtosis refers to the convexity or ﬂatness of the data distribution. Differences in examined variables were assessed by using the Mann– Whitney U test for 2 independent samples. In case of multiple categories per variable (such as employment status: employed/unemployed/ retired) the Kruskal–Wallis nonparametric test for comparing more than two samples was used. Spearman's correlation test was applied to investigate relationships between selected parameters. Internal consistency of the attitude and behavior sections in the questionnaire was evaluated using Cronbach's alpha coefﬁcient , which ranged from 0 to 1. Values of alpha coefﬁcient above 0.7 denote excellent internal consistency. Multiple linear regression models were designed to assess the predictive value of sociodemographic characteristics of parents on their knowledge, attitudes, and behaviors. Dependent variables were knowledge, attitude, and behavior scores. Independent variables were all characteristics of parents that could potentially inﬂuence overall knowledge, attitudes, and behaviors (gender, age, marital status, year of schooling, number of members in the household, monthly income, and number of children in the household). Additionally, demographic and clinical characteristics of children with epilepsy were tested in multiple linear regression models to evaluate predictors of parental attitude and behavior. In these models, dependent variables were parental attitude and behavior scores, while independent variables were child's age and gender, age at onset of epilepsy, length of pharmacotherapy, existence of partial seizures, number of seizures per month, number of medications, and existence of well-controlled seizures. A probability level of p b 0.05 was considered signiﬁcant. The SPSS 17.0 statistical software package (SPSS Inc., Chicago, IL, U.S.A.) was used to perform the statistical analysis. 3. Results Of the 213 study respondents, 77% were women. The mean parental age was 43 ± 8.2 years (age span: 24 to 69). Other sociodemographic characteristics of respondents are presented in Table 1. In addition, Table 1 displays demographic and clinical characteristics of children with epilepsy. The mean age of children was 13.4 ± 6.1 years. The average age at epilepsy onset was 6.4 years. Epilepsy was considered well controlled in 84.5% of the individuals.
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Table 1 Demographic characteristics of parents and their children with epilepsy. Variable Characteristics of parents Gender Women Men Place of residence House Apartment Marital status Single Married/cohabitating Divorced Widowed Education level Primary school (≤8 years) High school (9–12 years) University (N12 years) Employment status Employed Unemployed Retired Characteristics of children Gender Boys Girls Age ≤6 years 7–14 years 15–18 years Schooling Primary school High school Not in school Type of seizures Partial Generalized Speciﬁc epilepsy syndromes Epilepsy unspeciﬁed Other No. of medications 0 1 ≥2
4 187 13 9
1.9 87.8 6.1 4.2
33 122 58
15.5 57.3 27.2
119 83 11
55.9 39.0 5.2
25 98 90
11.7 46.0 42.3
95 35 83
44.6 16.4 39.0
142 29 4 2 19
72.4 14.8 2.0 1.0 9.7
28 122 63
13.1 57.3 29.6
As much as 88.3% of the parents had heard about epilepsy before their children were diagnosed with it. Slightly more than one-half (53.1%) considered themselves well informed about seizures. The treating neurologist was the main source of information for parents
Table 2 Percentage of correct answers to questions comprising knowledge score of parents of children with epilepsy. Item
Percentage of correct answers
1. Epilepsy is not an infectious disease. 2. If you skip therapy, next time, you should not take a double dose of medications. 3. Onset of seizures may occur at any age. 4. Children with epilepsy, for the most part, do not have a lower intelligence quotient. 5. Children with epilepsy are able to get vaccinated according to the current immunization calendar. 6. Not all the affected children lose consciousness during seizures. 7. Not all the affected children have the same symptoms. 8. Epilepsy is not a psychiatric disease. 9. Withdrawal of seizures after medication use does not mean that the patient is cured. 10. Children with epilepsy may encounter difﬁculties in learning. 11. Diagnosis of epilepsy is usually made based on at least two unprovoked seizures. 12. Epilepsy is not, for the most part, hereditary.
99.5 92.0 85.0 84.0 77.5 76.1 72.3 68.1 68.1 59.6 50.2 31.9
(85.4%), while 10% were informed through the internet. The average parental knowledge score was 8.6 ± 1.8 out of 12, while the observed score ranged from 2 to 12. Four (1.9%) participants correctly answered all items. Percentages of correct answers to questions comprising knowledge score are given in Table 2. Almost all (99.5%) respondents knew that epilepsy is not an infectious disease. On the other hand, the least proportion of parents (31.9%) knew that epilepsy is not, for the most part, hereditary. There was no statistically signiﬁcant difference in knowledge score between women (mean score: 8.6; mean rank: 106.9) and men (mean score: 8.5; mean rank: 107.3); U = 4003.5, p = 0.969. However, parents with more than 12 years of schooling knew statistically signiﬁcantly more about epilepsy (mean score: 9.5; mean rank: 139.6) compared with those who spent 12 or less years in school (mean score: 8.3; mean rank: 95.2); U = 2670.5, p = 0.001. Even though there was no statistically signiﬁcant difference in knowledge score between employed (mean score: 8.9; mean rank: 115.2), unemployed parents (mean score: 8.4; mean rank: 99.6), and retired parents (mean score: 7.6; mean rank: 73.3), χ2 = 6.837 p = 0.063, being employed and the level of monthly income signiﬁcantly correlated with higher knowledge score (ρ = 0.168, p = 0.014; ρ = 0.248, p = 0.001, respectively). Average parental attitude scores are presented in Table 3. Cronbach's alpha for this set of items was 0.858. The strongest positive attitude was obtained for the assertion “I want my family and friends to know that my child is suffering from epilepsy” (4.3 out of 5). On the contrary, the least positive attitude was observed for the assertion “If there was more social support my child would have more possibilities for personal development” (3.2 out of 5). There was no difference in attitude scores between women (mean score: 26.0; mean rank: 104.3) and men (mean score: 26.8; mean rank: 116), U = 3576, p = 0.239, or between more educated (mean score: 26.9; mean rank: 113.4) and less educated parents (mean score: 25.9; mean rank: 104.6), U = 4124.5, p = 0.351. Similarly, no difference was found in attitude score between employed (mean score: 26.9; mean rank: 113.6), unemployed (mean score: 25.4; mean rank: 98.2), and retired parents (mean score: 25.4; mean rank: 101.6), χ2 = 3.185 p = 0.203. However, education level and monthly income signiﬁcantly positively correlated with stronger positive attitude towards epilepsy (ρ = 0.167, p = 0.015; ρ = 0.235, p = 0.001, respectively). Speciﬁc behaviors of parents in our sample are given in Table 4. Cronbach's alpha of 0.776 was observed for this set of questions. Parents felt the most conﬁdent in taking care of their child during seizures (4.7 out of 5) and in letting him/her participate in all desired activities (4.7 out of 5). Parents felt the least conﬁdent in letting their child go on a school trip for several days (3.4 out of 5). Women (mean score: 29.2; mean rank: 105.1) and men (mean score: 29.4; mean rank: 113.3) had similar behavior scores, U = 3707, p = 0.404. Behavior score did not differ according to education levels (mean score: 29.0; mean rank: 109.8 for parents who had more than 12 years of schooling; mean score: 30.0; mean rank: 105.9 for parents who had 12 or less years of schooling, U = 4329, p = 0.674). Similarly, behavior score between employed (mean score: 33.3; mean rank: 114.9), unemployed (mean score: 27.9; mean rank: 95.1), and retired parents (mean score: 28.1; mean rank: 109.9) did not differ, χ2 = 5.243 p = 0.073. Still, more supportive parental behavior positively correlated with years of schooling (ρ = 0.206, p = 0.003) and with monthly income (ρ = 0.194, p = 0.005) but negatively correlated with the number of household members (ρ = −0.159, p = 0.020). In terms of the predictive value of various parental sociodemographic parameters, multiple linear regression analysis demonstrated that parental longer schooling (i.e., higher education level) was predictive of higher knowledge level regarding epilepsy (β = 0.224, 95% conﬁdence interval [CI]: 0.145–0.343, p = 0.001). Furthermore, higher monthly income (β = 1.007, 95% CI: 0.087–2.016, p = 0.013) and having more children in the household (β = 1.248,
T. Gazibara et al. / Epilepsy & Behavior 41 (2014) 210–216
Table 3 Parents' attitudes towards their children's epilepsy. Item
1. I want my family and my friends to know that my child is suffering from epilepsy. 2. I do not feel that other people treat my child as less valuable. 3. I think that my child will be able to achieve professional success later in life. 4. I am not concerned that my child has problems making friends. 5. I feel that I have enough support from my community with regard to my child's epilepsy. 6. I think that my child is as capable as healthy children. 7. If there was more social support, my child would have more possibilities for personal development. Total attitude score
4.3 3.9 3.9 3.8 3.8 3.5 3.2 26.2
1.3 1.5 1.6 1.7 1.8 1.8 1.8 5.7
−1.734 −1.080 −1.051 −0.852 −0.391 −0.562 −0.295 −0.650
1.346 −0.578 −0.723 −1.127 −1.711 −1.599 −1.793 −0.670
1 — I completely disagree; 5 — I completely agree; total score range: 7–35; SD — standard deviation.
95% CI: 0.159–2.337, p = 0.025) were predictive of stronger positive attitudes towards epilepsy in their children. The same linear regression model indicated that having less family members (β = − 1.184, 95% CI: − 1.959 to − 0.409, p = 0.003) and having more children in the household (β = 1.314, 95% CI: 0.071–2.557, p = 0.038) were predictors of more supportive behavior of parents of children with epilepsy (Table 5). In terms of demographic and clinical characteristics of children with epilepsy, predictors of stronger positive parental attitude were as follows: having a younger child with epilepsy (β = − 1.053, 95% CI: − 2.229 to − 0.123, p = 0.047), being older at the onset of epilepsy (β = 1.654, 95% CI: 0.206–3.102, p = 0.025), taking fewer medications (β = −2.312, 95% CI: −3.105 to −1.520, p = 0.001), and having wellcontrolled seizures (β = 1.693, 95% CI: 0.377–3.763, p = 0.032). Finally, less number of medications in epilepsy therapy (β = −2.350, 95% CI: −3.316 to −1.384, p = 0.001) was predictive of more supportive parental behavior (Table 6). 4. Discussion To the best of our knowledge, this was the ﬁrst evaluation of what Serbian parents know, perceive, and do in relation to epilepsy in their children. We observed that most parents (88.3%) were familiar with epilepsy previously. Moreover, some parents correctly answered all questions regarding epilepsy knowledge. Almost all respondents (99.5%) knew that epilepsy is not an infectious disease. In comparison, a lesser proportion of Turkish parents (89.5%) were certain about this fact, while in Mali, 21% of parents did not believe that the disease is contagious [18,2]. However, considerably low percentage of parents (68.1%) in our study was certain that epilepsy was not a psychiatric disorder, which may also reﬂect certain cultural beliefs. Studies have reported that parents in diverse cultures, in fact, consider epilepsy as a mental disorder  or of supernatural or spiritual origin [2,18,24], clearly indicating differences in education and cultural backgrounds across regions. The role of parental education level in relation to overall epilepsy knowledge was substantiated in our survey through the statistically signiﬁcant positive correlation as well as through the multiple linear regression model. Still, we noted a certain lack of knowledge among
parents of children with epilepsy. Speciﬁcally, some parents (31.9%) knew that epilepsy is not, for the most part, hereditary, which was also documented in Turkey . Besides, only one-half knew the general criterion for diagnosis of epilepsy, while one in four parents misbelieves that all seizures include loss of consciousness, a matter that 59.4% of the Turkish parents are unsure of . Epilepsy knowledge among parents has had a profound role on parental self-perception and their relationship with the child. Speciﬁcally, in low-income countries, such as Zambia, higher level of education was associated with less feeling of stigmatization among mothers . Moreover, parents who had higher knowledge on epilepsy were less restrictive of their child's activities and reported less worry . The epilepsy knowledge score did not differ between men and women. While both parents are, inevitably, affected by onset of epilepsy in their children [26,27], it seems that mothers sustain a greater burden of care for the child . In line with previous studies, it has been indicated that mothers demonstrate higher levels of strain and more sleep disturbances compared with fathers [17,29]. Because of this, it is likely that mothers become more involved in seizure-related issues. In terms of attitudes, it is encouraging that parents in our study expressed the strongest positive attitude towards the idea that they want their family and friends to know that their child is suffering from epilepsy. This indicates that Serbian parents had felt less stigmatized due to their child's epilepsy, which contrasts with the results of numerous studies. Speciﬁcally, fear of discrimination and social stigmatization represent major problems both for children with epilepsy and for their parents [30,31]. For example, 50% of the children deemed that being thought of as different or teased was the worst part about epilepsy, ranking it ahead of having actual seizures . Furthermore, 27% of the parents agreed with this assertion . At an international level, one-quarter of parents/caregivers keep their child's epilepsy a secret, while 62% fear that people would treat their child differently . In contrast, Serbian parents generally feel that other people do not treat their children differently. Also, on average, the parents considered that their child would be able to achieve professional success and make friends, which are major concerns of parents worldwide . These results of our study highlighted parental efforts to provide a supportive environment for the child's upbringing. Additionally, this may reﬂect particular local sociocultural patterns. For example, having
Table 4 Parents' behavior towards their children with epilepsy. Item
1. I am able to take care of my child during seizures. 2. In general, I let my child participate in all activities he/she wants. 3. I can let my child play games on the computer. 4. I can let my child play sports. 5. I have time for other things and other people despite the fact that my child has epilepsy. 6. I can leave my child without my supervision. 7. I can let my child go on a school trip for several days. Total behavior score
4.7 4.7 4.4 4.1 4.1 3.6 3.4 29.1
0.7 1.0 1.2 1.6 1.5 1.8 1.9 6.5
−3.740 −3.192 −2.145 −1.385 −1.249 −0.680 −0.503 −1.215
15.242 8.942 2.992 0.002 −0.231 −1.436 −1.687 0.561
1 — I completely disagree; 5 — I completely agree; total score range: 7–35; SD — standard deviation.
T. Gazibara et al. / Epilepsy & Behavior 41 (2014) 210–216
Table 5 Multiple regression analysis of sociodemographic characteristics of parents in prediction of knowledgea, attitudeb, and behaviorc towards their children with epilepsy. Variable
Knowledge score β (95% CI)
Female gender Age (years) Being married Years of schooling Number of family members Monthly income Total number of children in the household
Attitude score t
β (95% CI)
β (95% CI)
0.080 (−0.494–0.654) 0.275 0.784 −0.908 (−2.761–0.945) −0.966 0.335 −0.200 (−2.315–1.916) −0.186 0.853 −0.017 (−0.046–0.012) −1.147 0.253 −0.064 (−0.159–0.030) −1.339 0.182 −0.071 (−0.179–0.037) −1.303 0.194 0.213 (−0.465–0.890) 0.619 0.537 1.688 (−0.500–3.876) 1.521 0.130 2.405 (−0.092–4.902) 1.899 0.059 0.244 (0.145–0.343) 4.839 0.001 0.213 (−0.107–0.534) 1.311 0.191 0.264 (−0.103–0.630) 0.157 0.157 0.003 0.003 −0.008 (−0.218– 0.203) −0.074 0.941 −0.502 (−1.181–0.177) −1.457 0.147 −1.184 (−1.959 to −0.409) 0.201 (−0.123–0.572) 1.317 0.189 1.007 (0.087–2.016) 2.508 0.013 2.114 (−0.031–4.232) 1.899 0.059 −0.121 (−0.458–0.216) −0.707 0.480 1.248 (0.159–2.337) 2.260 0.025 1.314 (0.071–2.557) 0.038 0.038
CI — conﬁdence interval. Bold values denote statistical signiﬁcance. a F = 6.498; R2 = 0.185. b F = 3.411; R2 = 0.106. c F = 3.701; R2 = 0.114.
children has been highly regarded within Serbian society. Because of this, social integration of the affected children may be realized in a more tolerant manner. On the other hand, it seems that parents in our study were overall indecisive about the notion that if there was more social support, their child would have more possibilities for personal development. Even though we did not examine to what extent the community and epilepsy support groups encourage and help the parents, it is possible that parents feel that their own maximum involvement in caring for their child, regardless of other resources, is crucial for their future. It was noted in the United States that faith and sacriﬁce help parents cope with their child's epilepsy and that the parenting role is not the same for the affected child and other siblings . Similarly, research in Zimbabwe documented that religious or worship groups were the most common mode of community support for parents, whereas epilepsy support groups were the least addressed . Stronger positive parental attitude towards childhood epilepsy was inﬂuenced by higher monthly income and having more children. For instance, report from Italy indicated that one-third of mothers temporarily or indeﬁnitely leave their jobs to take care of their child with epilepsy . This means that a considerable proportion of families have reduced income after the onset of childhood epilepsy. Therefore, it could be presumed that certain ﬁnancial constraints may impact the overall perception of the epilepsy burden. According to our model, families without such an impediment had stronger positive feelings towards epilepsyrelated challenges. With regard to the positive association of the number of children and parental attitude, it is possible that other children in the household inﬂuence parental psychosocial adjustment to epilepsy by modifying their emotional focus. Still, we observed that contrasting child factors may predict stronger positive parental attitude (i.e., being younger at epilepsy onset versus being older at epilepsy onset). Speciﬁcally, being younger may indicate that parents with younger
children are still unaware of all the possible aspects that childhood epilepsy involves. However, the predictor “being older at onset” suggests that parents perceive that their child has developed sufﬁcient psychosocial skills to become overall independent. Additional child predictors of positive attitude in parents, taking less medications and having wellcontrolled seizures, were expected, bearing in mind the correlation of parental stress and severity of pediatric epilepsy . In terms of parental behaviors, we observed that Serbian parents, in general, do not object to their children's activities. This ﬁnding is particularly important because Pekcanlar Akay et al. from Turkey indicated that mothers fail to develop supportive and friendly relationships with their children with epilepsy, which also had repercussions on many aspects of daily living . Recent research highlighted that children with epilepsy like to participate in similar out-of-school and selfimprovement activities as their healthy peers . Therefore, parental support of a child's aspirations is relevant and could be a determinant of the child's self-esteem and coping with a disease . Also, parents in our study were, on average, in favor of their child playing computer games and sports. Still, the use of a computer has been restricted for pupils with epilepsy in certain British secondary schools  because some children and adolescents exhibit photosensitive seizures . With regard to sports, it has been reported that teenagers with higher frequency of seizures participate in fewer sports activities compared with healthy peers . However, a pilot study on the effects of a karate program for children and adolescents with epilepsy indicated that martial arts may improve self-esteem and social conﬁdence . In contrast, the greatest indecisiveness of parents in our study was related to letting the child go on a school trip for several days. Going on school trips is one of the top concerns of parents worldwide, ranked after having the ability to keep up with school work, joining in sports, and making new friends . This worry is closely related to the ﬁnding of Smith et al. , where parents expressed the need for constant
Table 6 Multiple regression analysis of sociodemographic and clinical characteristics of children with epilepsy in prediction of parental attitudea and behaviorb. Variable
Female gender Age (years) Age at onset Length of pharmacotherapy (years) Having partial seizures Number of seizures per month Number of medications Having well-controlled seizures
β (95% CI)
β (95% CI)
−0.505 (−1.782–0.772) −1.053 (−2.229 to −0.123) 1.654 (0.206–3.102) 0.789 (−0.394–1.971) −0.181 (−1.552–1.190) 0.064 (−0.014–0.135) −2.312 (−3.105 to −1.520) 1.693 (0.377–3.763)
−0.779 −1.765 2.252 1.315 −.261 0.109 −5.753 1.613
0.437 0.047 0.025 0.190 0.795 0.913 0.001 0.032
−0.446 (−2.002–1.111) −1.395 (−2.828–0.039) 1.154 (−0.034–2.341) 1.295 (−0.146–2.736) 0.214 (−1.457–1.885) −0.005 (−0.010–0.001) −2.350 (−3.316 to −1.384) 0.141 (−2.382–2.664)
−0.564 −1.918 1.915 1.772 0.253 −1.694 −4.797 0.110
0.573 0.056 0.057 0.078 0.801 0.092 0.001 0.912
CI — conﬁdence interval. Bold values denote statistical signiﬁcance. a F = 14.485; R2 = 0.362. b F = 9.319; R2 = 0.268.
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vigilance for their child's physical, emotional, and social health. Similarly, the second least conﬁdent behavior in our parents was leaving their child without their own supervision. Such concerns could also be associated with the circumstance that schools and teaching staff do not have any formal training as to how to manage a child having seizures. For this reason, the Italian League Against Epilepsy has launched a nationwide educational campaign, including educational movies and meetings with neurologists, with the aim of disseminating knowledge and adequate management of seizures in a school setting . Predictors of more supportive parental behavior were having less family members in the household. In terms of particular sociocultural patterns, typically in a Serbian household, there are several generations of family members cohabiting. Therefore, grandparents or other members of the extended family are usually involved in the health care of the child with disability. As a result, it seems that parents are more conﬁdent and exhibit more supportive behavior towards their child with epilepsy. Ramaglia et al.  reported that in Italy, 8% of the care burden is attributed to grandparents. Similarly, in Australia, grandparents who live relatively close to the nuclear family are included in taking care of their child with special needs, supporting family functioning and quality of life . In our study, because of the involvement of other members of the extended family in child care, it is possible that parents perceive that their child is less competent and, therefore, are more restrictive in terms of various activities. De Souza et al. in Brazil have noted that a considerable proportion of parents overprotect their child with epilepsy . On the other hand, nuclear families, living without extended family members in the household, appear to be more conﬁdent regarding their child's capacity of performing diverse tasks. This means that in the nuclear family, Serbian parents feel more conﬁdent in letting their children be more independent. In contrast, in Taiwan, vigilant parenting has been highlighted as a coping strategy for parents, but also a mode of social integration of the child with epilepsy . Information bias should be certainly taken into account as a limitation of our study. In addition, we did not examine differences in attitudes and behaviors of parents according to severity of child epilepsy. This study is also limited by the use of cross-sectional design, whose main disadvantage represents a lack of temporal relationship between exposure and outcome. Therefore, the established associations should be interpreted with caution. Our study could have also beneﬁtted from a larger sample size from a community-dwelling population. Finally, we did not collect the characteristics of 7.8% of parents who refused to participate in the study, which could have represented a source of selection bias. No apparent explanation was given as to why these parents did not provide consent for study participation. Because of this, we assumed that they did not have different characteristics from parents who were included in our survey. Also, given that a considerably smaller proportion of parents indeed refused to take participation, it is possible that their omission did not signiﬁcantly inﬂuence data validity. 5. Conclusion In conclusion, parental knowledge in Serbia requires improvement in some epilepsy-related issues. Although parents encounter challenges at various levels, overall parental attitudes seem to be more positive than those reported in other studies. However, Serbian parents share similar concerns with those in other countries. Ensuring education and support at the community and school levels for both parents and children with epilepsy should be the principal goal of health-care service. This could be achieved through organized training programs for parents that include epilepsy education, strategies to reduce anxiety, and coping with emotional strain. Also, the development of parent support networks at the regional, national, and international levels could provide additional assistance and encouragement to secure the social, emotional, and cognitive development of a child with epilepsy. Particular emphasis should be put on problem-solving and psychological
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