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Epilepsy is a chronic disease characterized by periodic seizures that result from abnormal integrated firing impulses in the brain. It is one of the most common neurological disorders. Over the past few years, there has been increasing awareness about the effect that having a child with epilepsy has on parents and the reciprocal impact of parental knowledge and attitudes regarding epilepsy on the affected child.
This study aimed to assess parental knowledge, attitudes, and behavior toward their epileptic children.
A cross-sectional study was conducted in 2018 by the Pediatric Neurology Department of King Abdulaziz University Hospital, Jeddah, the Kingdom of Saudi Arabia. A sample size of 115 of 332 parents who have a child diagnosed with epilepsy and aged 18 years or younger were recruited for this study. Statistical analysis was performed using SPSS version 21. Data analysis was performed using an independent
A total of 115 participants answered the questionnaire; of these, 65 (56.5%) were men, with an average age of 40.3 years, and the mean age of the children was 9.0 years. Overall, 85 (85/115, 73.9%) children were taken care of by both of their parents. The mean parental knowledge score was 7.49 (SD 2.08) out of 12, and it was significantly related to the educational level of the parent (
Parental knowledge in our sample still needs improvement. Therefore, more awareness campaigns should be made for the community and for the parents of affected children to create a supportive environment for the children and help them thrive and develop.
Epilepsy is a chronic disease characterized by periodic seizures that result from abnormal integrated firing impulses in the brain [
Around 50 million people have epilepsy worldwide, which accounts for 1% of the global burden of disease [
Public attitudes and knowledge toward epilepsy differ from one culture to another; for example, convulsive episodes at an unexpected moment in public may result in discrimination toward someone who is suffering from epilepsy [
On reviewing multiple publications in Saudi Arabia, we concluded that there is little information related to this study; therefore, we aimed to study and evaluate parental knowledge, attitudes, and behavior toward their epileptic child and conclude whether further awareness programs are essential to improve the overall quality of life for epileptic children and their caregivers.
The institutional review board of King Abdulaziz University (KAU) Hospital approved this study. A cross-sectional study assessing parental knowledge, attitudes, and behavior toward their epileptic children was conducted in 2018 by the Pediatric Neurology Department of KAU Hospital, Jeddah, the Kingdom of Saudi Arabia. A sample size of 115 of 332 parents who have a child diagnosed with epilepsy and aged 18 years or younger were recruited for this study. The data collected through telephone interview or Web-based Google form questionnaire, which was modified from international surveys that were previously used to assess parental knowledge and attitudes toward epilepsy, were translated into Arabic and then back translated to make sure the translation was accurate. Those who agreed to participate provided verbal consent.
Microsoft Excel version 2013 was used for data entry, and statistical analysis was performed using IBM SPSS Inc version 21. Data analyses were performed using an independent
The questionnaire contained two segments: sociodemographic characteristics of the parents (eg, gender, age, nationality, and educational degree) and demographic characteristics of their children with epilepsy (eg, age, educational level, child performance in school, the age of diagnosis, and who is the caregiver of the child).
The knowledge section of the questionnaire contained 12 items, 10 of which were yes or no or I don’t know questions. These questions included whether epilepsy is contagious, psychological, or genetic; whether or not all epileptic children lose consciousness during seizures; do all of the affected children show the same symptoms; is it possible for epileptic children to take vaccine according to a specific timetable; whether or not epileptic children had lower IQ than their peers; and whether or not epileptic children had difficulties in learning. The last 2 yes/no/I don’t know questions were regarding the use of medications—whether or not the child is cured of seizures after using medicine and whether or not, after forgetting to take the prescribed drug, the patient must double the dose next time. The other 2 questions had multiple choices: age of onset of seizures (before 1 year of age/until 18 years of age/at any age) and what indicates the diagnosis of epilepsy (loss of consciousness during a seizure/one unprovoked seizure/at least two unprovoked seizures).
Each correct answer was given 1 point. Therefore, the total score of knowledge was graded between 0 (the lowest grade) and 12 (the highest grade) points.
A total of 7 statements were scored using Likert scales (summative scales; strongly disagree, disagree, neither agree nor disagree, agree, and strongly agree), where the minimum score 1 represented “I strongly disagree” and the maximum score 5 represented “I strongly agree.” The total score ranged from 7 to 35. Parents were asked about whether they feel comfortable if their family or friends knew that they have an epileptic child; if they would be worried about their child capability on making friends; if, perhaps, other people will treat their child differently; if they believe that their child will be able to achieve success in his/her career; if they believe their child will be as qualified as any other healthy children or, if there is more social support, the child will have more chances to self-develop; and if they receive enough support from the society for their epileptic child.
A total of 7 statements were scored using Likert scales (strongly disagree, disagree, neither agree nor disagree, agree, and strongly agree), where the minimum score 1 represented “I strongly disagree” and the maximum score 5 represented “I strongly agree.” The total score ranged from 7 to 35. Parents were asked about whether they are capable of taking care of their child during seizures, if they allow their child to participate in any activity he/she desires, if they would let their child to play video games or play a sport or to go on school trips, if they can leave their child without supervision, and if the parents have time to meet other people and participate in other activities for themselves.
This study aimed to evaluate parental knowledge, attitudes, and behaviors toward their epileptic children.
Of the 115 study participants, 65 (56.5%) were men. The average parental age was 40.3 years (SD 8.4; age range: 24-63 years). Overall, 77 (67.0%) were Saudi parents. In addition, 54 (47.0%) parents received a college education, and 4 (3.5%) did not receive any education.
Almost three-fourth of the children were taken care of by both of their parents (85/115, 74.0%). The mean age of the children was 9.0 years (SD 5.3; age range: 1-18 years). Moreover, 51 (44.3%) children were diagnosed with epilepsy before the first year of life.
Other sociodemographic characteristics of parents and children are presented in
The mean parental knowledge score was 7.49 (SD 2.08). Of 115 parents, 104 (90.4%) knew that epilepsy is not a contagious disease. In contrast, only 33 (28.6%) knew how epilepsy is diagnosed. There was no significant difference in the knowledge scores between men (mean score 7.35) and women (mean score 7.66;
Mean parental attitude scores for each question are presented in
Mean parental behavioral scores for each question are presented in
Demographic characteristics of parents and their children with epilepsy.
Characteristics | Values | ||
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Male | 65 (56.5) |
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Female | 50 (43.5) |
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24-34 | 28 (24.3) |
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35-44 | 55 (47.9) |
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45-54 | 26 (22.6) |
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≥55 | 6 (5.2) |
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Saudi | 77 (67.0) |
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Non-Saudi | 38 (33.0) |
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Primary school | 7 (6.1) |
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Intermediate school | 16 (13.6) |
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High school | 33 (28.7) |
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College | 55 (47.8) |
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None | 4 (3.5) |
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≤6 | 41 (35.7) |
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7-14 | 50 (43.4) |
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15-18 | 24 (20.9) |
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Primary school | 26 (22.6) |
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Intermediate school | 9 (7.8) |
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High school | 15 (13.0) |
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None | 65 (56.5) |
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Excellent | 11 (9.6) |
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Needs improvement | 26 (22.6) |
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Good | 13 (11.3) |
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None | 65 (56.5) |
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<1 | 51 (44.3) |
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1-4 | 26 (22.6) |
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5-9 | 25 (21.7) |
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10-14 | 6 (5.2) |
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15-18 | 7 (6.1) |
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Both parents | 85 (73.9) |
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Father | 1 (0.9) |
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Mother | 28 (24.3) |
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Sister | 1 (0.9) |
Percentage of correct answers to questions comprising the knowledge score of parents of children with epilepsy.
Item | Correct answers (%) |
Epilepsy is not an infectious disease | 90.4 |
Epilepsy is not a psychiatric disease | 73.0 |
Epilepsy is not, for the most part, hereditary | 33.0 |
Not all the affected children lose consciousness during seizures | 33.0 |
Not all the affected children have the same symptoms | 71.3 |
Children with epilepsy are able to get vaccinated according to the current immunization calendar | 63.5 |
Children with epilepsy, for the most part, do not have a lower IQ | 47.0 |
Withdrawal of seizures after medication use does not mean that the patient is cured | 76.5 |
If you skip therapy, next time, you should not take a double dose of medications | 82.6 |
Children with epilepsy may encounter difficulties in learning | 64.3 |
Onset of seizures may occur at any age | 85.2 |
Diagnosis of epilepsy is usually made based on at least two unprovoked seizures | 28.7 |
Mean scores and standard deviations of attitude-related questions.
Question | Score, mean (SD) |
I want my family and friends to know my child is epileptic | 3.84 (1.196) |
I do not feel that other people treat my child as different | 3.44 (1.265) |
I believe my child will be able to achieve success in his/her career | 4.12 (0.984) |
I am not worried about my child’s capability to make friends | 3.75 (1.067) |
I feel I receive enough support from my society regarding my epileptic child | 3.49 (1.187) |
I believe my child is as qualified as any other healthy children | 3.57 (1.148) |
If there is more social support, my child will have more chances to self-develop | 4.30 (0.946) |
Mean scores and standard deviations of behavior-related questions.
Question | Score, mean (SD) |
I am capable in taking care of my child during seizures | 3.89 (1.145) |
In general, I allow my child to participate in any activity he desires | 3.64 (1.078) |
I allow my child to play video games | 3.06 (1.045) |
I allow my child to play sport | 4.17 (0.798) |
Although my child is epileptic, I have time to meet other people and participate in other activities | 4.06 (0.841) |
I can leave my child without supervision | 2.25 (1.091) |
I allow my child to go on school trips | 2.27 (1.126) |
Relationship between different sociodemographic characteristics and mean scores in knowledge, attitudes, and behavior, using independent samples
Factor | Knowledge | Attitude | Behavior | |||||
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Meana | Meanb | Meanb | |||||
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.44 |
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.77 |
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.99 | |
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Male | 7.35 |
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3.80 |
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3.34 |
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Female | 7.66 |
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3.77 |
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3.33 |
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.54 |
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.73 |
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.88 | |
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Saudi | 7.40 |
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3.77 |
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3.34 |
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Non-Saudi | 7.66 |
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3.82 |
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3.32 |
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.004 |
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.13 |
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.24 | |
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<12 | 6.97 |
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3.70 |
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3.27 |
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>12 | 8.09 |
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3.88 |
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3.40 |
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.51 |
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.36 | |
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Primary school | 7.58 |
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3.96 | .23 | 3.49 |
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Intermediate school | 6.56 |
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3.52 | .23 | 3.33 |
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High school | 7.27 |
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3.69 | .23 | 3.40 |
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Not studying | 7.63 |
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3.78 | .23 | 3.26 |
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.35 |
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.49 |
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.32 | |
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<1 | 7.75 |
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3.89 |
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3.35 |
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1-4 | 7.50 |
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3.66 |
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3.29 |
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5-9 | 7.40 |
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3.81 |
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3.50 |
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10-14 | 7.33 |
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3.60 |
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3.02 |
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15-18 | 6.00 |
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3.63 |
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3.12 |
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.59 |
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.18 |
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.96 | |
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Above average | 7.13 |
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3.90 |
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3.44 |
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Below average | 7.46 |
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3.71 |
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3.43 |
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.68 |
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.76 |
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.88 | |
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Father | 6.00 |
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3.29 |
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3.29 |
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Mother | 7.25 |
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3.86 |
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3.40 |
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Both parents | 7.56 |
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3.77 |
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3.31 |
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Sister | 9.00 |
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3.71 |
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3.57 |
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aKnowledge mean score out of 12.
bAttitudes and behavior mean score out of 5.
cChildren who are not in school were excluded.
Relationship between different sociodemographic characteristics and mean scores in knowledge, attitudes, and behavior, using Pearson correlation test.
Factor | Knowledge | Attitudes | Behavior | |||
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Pearson correlation | Pearson correlation | Pearson correlation | |||
Parental age | 0.030 | .75 | −0.072 | .44 | 0.004 | .97 |
Child age | −0.068 | .47 | −0.188 | .045 | −0.016 | .87 |
This study was conducted on parents to evaluate the knowledge, attitudes, and behaviors of parents toward their epileptic children; few parents answered all questions correctly (2/115, 2.0%). On the one hand, most of the participants (104/115, 90.4%) strongly think that epilepsy is not a communicable disease, and the mean score is less than 2 in previously conducted studies in Jordan (98.5%) and Serbia (99.5%) [
Although most of our sample had a high level of education, there is still lack of knowledge and wrong beliefs about epilepsy, for example, 33% of parents think that epilepsy is mostly not hereditary, similar to the Serbian study in which 32% of parents answered correctly [
In the attitudes section of the questionnaire, we found a positive response about the desire to inform friends and family members about their child who is suffering from epilepsy (mean score 3.84), suggesting that they already knew that the disease is not shameful. Serbian parents responded even more positively regarding that statement (mean score 4.3) [
Behaviors of parents toward their children differ according to educational level, economic level, and cultural habits [
One of the limitations of this study was the small sample size because of the high number of parents not answering the telephone as well as the poor cooperation and linguistic abilities of some parents. Furthermore, patients who did not answer the call or refused to participate may have a different set of knowledge, attitudes, and behaviors.
In conclusion, the mean knowledge score of our sample was less than our expectation, and only 2 of 115 participants correctly answered all knowledge-related questions. As expected, we found a significant relationship between parental educational degree and knowledge score. Parental knowledge in our sample still needs improvement. Therefore, more awareness campaigns should be conducted for the community and for the parents of affected children to create a supportive environment for the children and help them thrive and develop and to help parents gain the skills to control their children's epilepsy to minimize the negative outcomes. Thankfully, multiple epilepsy-related educational programs around the world showed significant efficacy to correct misconceptions and improve parental knowledge toward their children’s condition [
King Abdulaziz University
None declared.