Parents’ knowledge, awareness, and practices towards children with epilepsy in the Riyadh Region, Saudi Arabia: A cross-sectional study

ABSTRACT

Background:

Epilepsy (EP) is among the most common neurological disorders in children globally, with a notably high prevalence in Saudi Arabia, partly due to elevated consanguinity rates. Despite substantial research, limited data exist on parental knowledge, awareness, and practices (KAP) regarding childhood epilepsy in Riyadh. This study assessed parents’ understanding and attitudes towards epilepsy.

Methods:

A cross-sectional survey was conducted among 455 parents residing in Riyadh using a newly developed 27-item online questionnaire. Statistical analysis was performed using SPSS, with significance at P < 0.05.

Results:

Many parents lacked sufficient knowledge about epilepsy. About 37.6% believed epilepsy was curable, and 25.85% attributed it to possession by demons. Convulsions (38.54%) and loss of consciousness (31.67%) were the most recognized symptoms. Awareness of treatment options was low, with only 21.5% knowing about surgical interventions. While 64.2% of parents believed children with epilepsy could succeed academically and professionally, 51.9% preferred not to disclose the diagnosis to friends and family. Regarding practices, 62.6% had witnessed a seizure, but 67% reported fear when encountering one. First-aid responses varied: 31.7% prioritized removing the patient from danger, while 23.7% would call an ambulance.

Conclusion:

Parental knowledge and awareness remain moderate, with persistent misconceptions and social stigma. Targeted educational programs are urgently needed to correct misunderstandings, promote effective first-aid responses, and foster community support for children with epilepsy. Enhancing public awareness could significantly improve epilepsy management and outcomes for affected families.

Introduction

Epilepsy refers to a collection of neurological conditions marked by recurrent seizures. The condition is as a result of abnormal, excessive electrical discharges of the nerve cells or neurons in the brain. Epileptic seizures are nonspecific responses of the brain to all kinds of abuses. Hence, epilepsy can originate from diverse sources within the brain.[1] Standing as one of the most common neurological disorders, 50 million people worldwide have epilepsy, representing more than 0.5% of the global burden of disease.[2] Globally, the incidence of epilepsy in children ranges from 41 to 187/100,000,[3] while the prevalence was highest in infants.[4] Saudi Arabia is one of the countries that have showcased significant reduction in epilepsy incidence rates in the past decade relative to the global trends. The prevalence of active epilepsy in Saudi Arabia has seen a 39% decrease in recent studies within the past two decades, a significantly lower rate than what was reported from most developed countries, with active epilepsy at 4.4/1000 persons.[4,5] The reported decrease in active epilepsy rates in Saudi Arabia has been suggested to reflect improvements in diagnosis, reporting systems, and access to healthcare, although causal factors were not directly assessed in these studies. Insightfully, while inherited neurological conditions such as epilepsy and genetic epilepsy syndromes in Saudi Arabia are showcasing a reduction in prevalence trends, these conditions remain the primary reason for referrals to pediatric neurology in the country.[6] There are specific challenges that the Saudis must address to steer better management of epilepsy incident rates in the country. Principally, inadequate knowledge about epilepsy has a potentially affects patients, families, and healthcare utilization in Saudi Arabia.[7] After reviewing the literature, it is notable that there is still a deficit in the data in Saudi Arabia’s Capital, Riyadh, as it has yet to have any data on patients’ parents despite its status as the most densely populated city in the country. Therefore, this study aims to fill this gap by examining parents’ knowledge, awareness, and practices regarding epilepsy in Riyadh.

This study is justifiable on the ground that it addresses misinformation and disinformation about epilepsy in Riyadh. Unfortunately, due to misconceptions and poor understanding of epilepsy, it has become the most stigmatized medical condition worldwide.[8] The extent of epilepsy awareness in the Riyadh population requires enhancement.[9] Neyaz et al. have reported that epilepsy is surrounded by a variety of false beliefs and misconceptions among the general population as well as families with epileptic patients. A significant 67.7% of the participants, according to the findings by Neyaz et al.,[10] despite their educational attainment and understanding of epilepsy, maintain the belief that Jinn possession can be a causative factor for epilepsy. In Saudi Arabia, there are concurrent religious and cultural beliefs regarding the etiology and treatment of epilepsy alongside medical perspectives that impede the efforts made towards managing the condition.[11,12]

People’s knowledge about epilepsy is improving. However, it is not adequate yet. Moreover, a study conducted in the Al Baha Region, Saudi Arabia, demonstrated that attitudes toward epilepsy remain inadequate, with 59.2% of families of children with epilepsy believing that antiepileptic medications negatively affect their child’s quality of life.[9] Another study that was conducted at King Abdulaziz University Hospital, Jeddah, Saudi Arabia, has shown that the level of understanding among parents of children with epilepsy requires enhancement, as many hold significant misconceptions and negative attitudes.[13] Al-Dossari et al.’s[14] research has identified specific individual characteristics that correlate with a better understanding of epilepsy. These include attaining a higher level of education, being female, and having a family member with epilepsy, all of which were positively associated with improved knowledge and attitudes. In a study conducted in Al-Qassim, the female gender was associated with lower knowledge than the male gender (71% vs 81.6%, respectively).[7] In Abha, children demonstrated sufficient awareness regarding epilepsy and exhibited adequate attitudes and behavioral patterns in their practices.[15,16] Bearing the above background, conducting a study that fosters knowledge creation on epilepsy in Riyadh and Saudi Arabia by extension should help eliminate misinformation and disinformation, counter associated stereotypes, and steer all stakeholders towards effective prevention and management of epilepsy cases in the region.

This study contributes to the literature by providing updated, region-specific data from Riyadh, the largest metropolitan area in Saudi Arabia, and by integrating knowledge, awareness, and practice domains into a comprehensive KAP framework, enabling more targeted public health interventions. From a clinical and public health perspective, this study provides actionable insights for healthcare practitioners, educators, and policymakers. Understanding parental misconceptions and knowledge gaps enables clinicians to tailor communication strategies, improve counseling during clinic visits, and enhance adherence to treatment plans. For patients and their families, improved awareness can reduce stigma, promote early medical consultation, and support appropriate first-aid practices during seizures. Ultimately, addressing these knowledge gaps may lead to better disease management, improved quality of life for children with epilepsy, and reduced psychosocial burden on families.

Materials and Methods

Study design and setting

This study employed a cross-sectional analytical design to assess parents’ knowledge, awareness, and practices (KAP) regarding childhood epilepsy in Riyadh, Saudi Arabia. The study was conducted between June 2024 and June 2025 and focused on all parents residing in Riyadh. The purpose was to explore the factors contributing to misconceptions and varying practices in managing epilepsy among children.

Sample size and sampling techniques

The sample size was calculated using the Raosoft sample size calculator for cross-sectional studies. Based on a 95% confidence level, a 5% margin of error, and an estimated response rate of 50%, the minimum required sample size was 385. This estimation was powered to detect statistically significant differences in proportions across demographic subgroups using the Chi-square test. To increase precision and account for nonresponse, a total of 455 participants were recruited. Participants were selected using a stratified random sampling method to ensure representation of diverse demographic groups. Participants were recruited through online platforms, including social media (Twitter/X, WhatsApp groups), parent community groups, and school communication networks across Riyadh. Stratification was implemented by targeting proportional representation across key demographic variables (age groups, gender, and educational level) during recruitment. However, because data collection is online, this approach is best described as stratified convenience sampling rather than as true probability-based stratified random sampling. Inclusion criteria required participants to be parents aged 18 years or older, currently residing in Riyadh, and willing to provide informed consent.

Data collection and study questionnaire

Data was collected using a self-administered online questionnaire specifically developed for this study. The instrument underwent face and content validation by three subject-matter experts and was pilot-tested with a sample of 30 parents to assess clarity and reliability (Cronbach’s alpha = 0.81). The questionnaire was divided into four sections: sociodemographic data, knowledge (10 items), of which 6 core items were used to compute the composite knowledge score (range, 0–8), with each correct response scored as 1.

Data management and statistical analysis

Data were securely stored and analyzed using SPSS version 27. Descriptive statistics (frequencies, percentages, means, and standard deviations) summarized participant characteristics and response distributions. Bivariate associations between knowledge scores and demographic factors were tested using nonparametric tests (Mann–Whitney U and Kruskal–Wallis tests) due to non-normal score distribution. Binary logistic regression was used to assess predictors of good knowledge (defined as scores above the median; P < 0.05 were considered statistically significant). Normality of knowledge scores was assessed using the Shapiro–Wilk test and visual inspection of histograms. The distribution was non-normal (P < 0.05), justifying the use of nonparametric tests.

Results

Knowledge assessment

The sample comprised 455 participants, with most parents aged 31–45 years (n = 197, 43.3%), followed by those aged 46–60 years (n = 146, 32.1%). The gender varies across the sample, with a higher proportion of females (n = 354, 77.8%) than males (n = 101, 22.2%). While most participants were married (n = 380, 83.5%), some parents were single (n = 52, 11.4%) or divorced (n = 23, 5.1%).

Regarding the current position, most participants were employed (n = 176, 38.7%), housewives (n = 134, 29.5%), retired (n = 47, 10.3%), and students (n = 46, 10.1%). The largest proportion of participants is currently enrolled in a university (n = 304, 66.8%), followed by those with postgraduate studies (n = 81, 17.8%) and those in school (n = 62, 13.6%). Moreover, 8 (1.8%) participants had no formal education [Table 1].

Table 1.

Demographic data for the study sample

	Categories	Count	Percentage
Age	18–30	88	19.3
	31–45	197	43.3
	46–60	146	32.1
	>60	24	5.3
Gender	Male	101	22.2
	Female	354	77.8
Marital status	Single	52	11.4
	Married	380	83.5
	Divorced	23	5.1
Educational level	A) No formal education	8	1.8
	B) School	62	13.6
	C) University	304	66.8
	D) Postgraduate studies	81	17.8
Occupation	A) Employed	176	38.7
	B) Healthcare provider	36	7.9
	C) Self-employed	9	2.0
	D) Housewife	134	29.5
	E) Retired	47	10.3
	F) Student	46	10.1
	G) Unemployed	7	1.5

The analysis of participants’ knowledge about epilepsy revealed that most participants (n = 407, 89.5%) were aware of the disease, and only a few respondents (n = 48, 10.5%) had not heard or read about it before. Notably, a small percentage of participants confirmed that epilepsy is a curable disease (n = 102, 22.4%). Additionally, only a small percentage of the participants realized that children with epilepsy are not at higher risk of side effects from vaccination (n = 96, 21.1%). Regarding timing, the fact that seizures may occur at any age was well known to most participants (n = 298, 65.5%). Moreover, 224 (49.2%) persons agreed that only one episode of a seizure is not enough to diagnose a patient with epilepsy disorder. The participants’ expectations regarding the causes of epilepsy were widely variable among participants with neurological disease (n = 75, 31.78%), possession by demons or evil spirits (n = 61, 25.85%), and hereditary (n = 56, 23.73%) causes being the most chosen. Convulsions (n = 185, 38.54%) and brief loss of consciousness (n = 152, 31.67%) were the most identified epilepsy symptoms. As expected, the surgical treatment strategy was unfamiliar to most participants (n = 283, 62.2%). Medical treatment and follow-up were acknowledged by 141 (44.9%) persons as the best approach for epilepsy [Table 2].

Table 2.

Public knowledge of epilepsy risk factors and treatment

	Categories	n	%
		Count	Percentage
1- Have you ever heard or read about epilepsy?	Yes	407	89.5
	No	48	10.5
2- Do you think epilepsy is a curable disease?	Yes	171	37.6
	No	102	22.4
	I do not know	182	40
3- Children with epilepsy are at higher risk of side effects from vaccination	Yes	60	13.2
	No	96	21.1
	I do not know	299	65.7
4- An onset of seizures may occur at any age	Yes	298	65.5
	No	15	3.3
	I do not know	142	31.2
5- Is only one episode of a seizure enough to diagnose a patient with epilepsy	Yes	80	17.6
	No	224	49.2
	I do not know	151	33.2
6- The cause of epilepsy is	Possession by demons or evil spirits	61	25.85
	Mental & madness	1	0.42
	Emotional reaction	34	14.41
	Psychiatric	28	11.86
	Hereditary	56	23.73
	Blood disease	4	1.69
	Neurological disease	75	31.78
	Drugs	19	8.47
	Brain disease	8	3.39
	Infection	8	3.39
	I do not know	39	16.55
7- What do you think is the manifestation of epilepsy?	Foaming at the mouth	151	31.46
	Numbing	31	6.46
	Brief loss of consciousness	152	31.67
	Joints pain	17	3.54
	Changes in behavior	22	4.58
	Jaundice	14	2.92
	Convulsions	185	38.54
	Staring in the distance	48	10
	I do not know	12	2.5
8- The best treatment for epilepsy is	Medical treatment and follow-up	141	44.9
	Therapeutic religious rituals	56	18
	Traditional medicine	27	8.6
	Herbal remedies	15	4.8
	Cauterization	9	2.9
	Epilepsy is untreatable	14	4.5
	No need for treatment	1	0.3
	I do not know	54	17.3
9- Do you know if surgery is an option for treating uncontrollable cases of epilepsy?	Yes	98	21.5
	No	74	16.3
	I do not know	283	62.2

The study showed moderate knowledge levels about epilepsy disorder among participants, with a mean knowledge score of 3.76 (±1.75). The median knowledge score was 3, with an interquartile range of 2–4. Although the majority of participants had heard or read about the disorder (n = 407, 89.5%), their knowledge of other concepts was deficient. A limited number of them could correctly recognize that surgery is an option for epilepsy treatment (n = 98, 21.5%) and that children with epilepsy are not at higher risk of side effects from vaccination (n = 96, 21.1%), constituting the lowest known concepts. Also, knowledge of the disease’s curability was insufficient (n = 102, 22.4%). In contrast, knowledge was highest regarding the onset of the disease (n = 298, 65.5%) and the required frequency for diagnosis (n = 224, 49.2%) [Table 3 and Figure 1].

Table 3.

Knowledge assessment of epilepsy disease among study participants

Question	Answer	n	%
1- Have you ever heard or read about epilepsy?	Yes	407	89.5
2- Do you think epilepsy is a curable disease?	No	102	22.4
3- Children with epilepsy are at higher risk of side effects from vaccination	No	96	21.1
4- Onset of seizures may occur at any age	Yes	298	65.5
5- Is only one episode of a seizure enough to diagnose the patient with epilepsy	No	224	49.2
6- Do you know if surgery is an option for treating uncontrollable cases of epilepsy?	Yes	98	21.5

Total knowledge score: mean (SD) 3.76 (1.75); median (range) 4 (0–8)

Figure 1.

Distribution of participants’ responses to key knowledge items regarding epilepsy (curability, causes, symptoms, and treatment awareness)

There were no statistically significant differences in knowledge scores across demographic variables. Equal median scores in females (median = 4, range = 0–8) and males (median = 4, range = 1–8) were reported with no statistical difference (P = 0.844). Also, both married (median = 3.5, range = 0–6) and divorced participants (median = 3.5, range = 0–6) had the same median knowledge score across marital-status categories. However, the analysis was not statistically significant (P = 0.403).

While people aged 31–45 years (median = 4, range = 0–8) and 46–60 years (median = 4, range = 0–8) had median scores, the difference compared with other age groups was not statistically significant (P = 0.278). Occupation comparison revealed higher median scores for healthcare providers (median = 5.5, range = 2–8) among other occupations. Nevertheless, this difference was not statistically significant (P = 0.472). Regarding academic qualifications, participants with postgraduate degrees and university degrees both had higher median knowledge scores (median = 4.00) than others, but this difference was not significant (P = 0.642) [Table 4 and Figure 2].

Table 4.

Knowledge score distribution by demographics

Variable	Category	Knowledge Score (0–8)
		Median	Range	P K/U
Gender	Male	4.00	1.00–8.00	0.844
	Female	4.00	0–8.00
Age (years)	18–30	3.50	0–8.00	0.278
	31–45	4.00	0–8.00
	46–60	4.00	0–8.00
	>60	3.00	0–7.00
Marital status	Single	3.50	0–6.00	0.403
	Married	4.00	0–8.00
	Divorced	4.00	1.00–7.00
Occupation	A) Employed	3.50	0–8.00	0.472
	B) Healthcare provider	5.50	2.00–8.00
	C) Self-employed	4.00	3.00–7.00
	D) Housewife	4.00	0–8.00
	E) Retired	3.00	0–7.00
	F) Student	4.00	0–7.00
	G) Unemployed	3.00	2.00–6.00
Educational level	A) No formal education	3.50	0–5.00	0.642
	B) School	3.00	0–7.00
	C) University	4.00	0–8.00
	D) Postgraduate studies	4.00	0–7.00

^KIndependent samples: Kruskal–Wallis test. ^UIndependent samples: Mann–Whitney U test. *P<0.05, significant

Figure 2.

Participants’ awareness and attitudes towards epilepsy across Likert scale domains

There was no statistically significant relationship among all demographic variables and knowledge of epilepsy. Slightly higher knowledge odds were found in females than in males (aOR = 1.038, 95% CI: 0.651–1.655, P = 0.875). In comparison with those aged 46–60, the population aged 18–30 reported the highest odds of knowledge (aOR = 1.182, 95% CI: 0.411–3.400). However, this result was not statistically significant (P = 0.756). Although single participants had higher odds of knowledge compared to married persons, this result was not statistically significant (aOR = 1.517, 95% CI: 0.502–4.584, P = 0.460). Compared to different jobs, the retired population had the highest odds of knowledge (aOR = 3.083, 95% CI: 0.583–16.294, P = 0.185). Regarding academic achievements, people with no formal education had the highest odds of knowledge (aOR = 1.615, 95% CI: 0.295–8.846, P = 0.581) [Table 5].

Table 5.

Logistic regression analysis of demographic factors associated with knowledge score

Variable	Category	B	P	Adjusted Odds Ratio (AOR)	95% CI for (AOR)
					Lower	Upper
Gender	Male	Ref	Ref	Ref	Ref	Ref
	Female	.037	.875	1.038	.651	1.655
Age (years)	18–30	.168	.756	1.182	.411	3.400
	31–45	−.640	.198	.527	.199	1.398
	46–60	−.553	.274	.575	.214	1.549
	>60	Ref	Ref	Ref	Ref	Ref
Marital status	Single	.417	.460	1.517	.502	4.584
	Married	−.237	.615	.789	.314	1.984
	Divorced	Ref	Ref	Ref	Ref	Ref
Occupation	A) Employed	.506	.517	1.659	.358	7.678
	B) Healthcare provider	−1.540	.074	.214	.040	1.162
	C) Self-employed	.405	.697	1.500	.195	11.536
	D) Housewife	.269	.732	1.309	.281	6.099
	E) Retired	1.126	.185	3.083	.583	16.294
	F) Student	.613	.461	1.846	.362	9.421
	G) Unemployed	Ref	Ref	Ref	Ref	Ref
Educational level	A) No formal education	.479	.581	1.615	.295	8.846
	B) School	.386	.290	1.471	.720	3.007
	C) University	.165	.526	1.180	.708	1.967
	D) Postgraduate studies	Ref	Ref	Ref	Ref	Ref

Regarding the awareness level, several domains were investigated on a scale of 1 to 5. The scale represents the level of agreement among our participants (strongly disagree, disagree, neutral, strongly agree, agree). Most participants strongly agreed that a child with epilepsy needs to be treated differently (n = 153, 33.6%). However, most of them strongly disagreed that their family and friends should know if their child has epilepsy (n = 236, 51.9%). Concurrently, 292 (64.2%) participants strongly agreed that a child with epilepsy has the capability for school and career achievement. Moreover, “a child with epilepsy can participate in any activities like (school trips, sports, etc.)” is a concept agreed by the majority of participants (n = 191, 42%). Additionally, many people confirmed that epileptic drugs help improve the child with epilepsy’s life (n = 251, 55.2%). Markedly, few people reported that they had attended any educational activity/course or watched a program on controlling an epileptic seizure (n = 1, 0.2%). Regarding supervision needs, 337 (74.1%) participants think that they cannot leave their child with epilepsy alone at home without supervision [Table 6].

Table 6.

Awareness level about the epilepsy disorder among the included participants

Question	Response	n	%
1- Do you think a child with epilepsy needs to be treated differently?	1	88	19.3
	2	32	7
	3	116	25.5
	4	66	14.5
	5	153	33.6
2- Do you think a child with epilepsy has the capability for school and career achievement?	1	24	5.3
	2	12	2.6
	3	60	13.2
	4	67	14.7
	5	292	64.2
3- Do you think a child with epilepsy can participate in any activities like (school trips, sports, etc.)?	1	37	8.1
	2	31	6.8
	3	114	25.1
	4	82	18
	5	191	42
4- Do you think epileptic drugs help improve a child with epilepsy’s life?	1	24	5.3
	2	12	2.6
	3	71	15.6
	4	97	21.3
	5	251	55.2
5- I want my family and friends to know my child is epileptic	1	236	51.9
	2	49	10.8
	3	78	17.1
	4	27	5.9
	5	65	14.3
6- Have you ever attended any educational activity/course or watched a program on controlling an epileptic seizure?	1	100	22
	2	351	77.1
	3	3	0.7
	4	0	0
	5	1	0.2
7- Do you think you can leave your child with epilepsy alone at home without supervision?	1	337	74.1
	2	41	9
	3	45	9.9
	4	7	1.5
	5	25	5.5

Regarding the practice level, a large percentage of participants had witnessed a person experiencing a seizure attack (n = 285, 62.6%). The majority of individuals reported that if they have a child with epilepsy, they will inform the child’s teacher about the child’s condition (n = 418, 91.9%). Moreover, most people fear seeing someone seizing (n = 305, 67%). Regarding management, many participants tend to follow up with a doctor (n = 451, 99.1%). The participants’ opinions regarding appropriate first management are widely varied. Taking patients away from danger was the most chosen action (n = 130, 31.7%), followed by calling an ambulance (n = 97, 23.7%) and putting a spoon or cloth in their mouth (n = 82, 20%) [Table 7 and Figure 3].

Table 7.

Practice levels of epilepsy disorder among the included participants

Question	Response	n	%
1- Have you ever witnessed a person experiencing a seizure attack?	Yes	285	62.6
	No	170	37.4
2- Do you inform your child’s teacher about his case?	A) Yes	418	91.9
	B) No	12	2.6
	C) I do not know	25	5.5
3- Do you feel afraid when you see someone seizing?	A) Yes	305	67
	B) No	146	32.1
	C) I do not know	4	0.9
4- What will you do if your child has epilepsy?	A) Use herbal medicine	3	0.7
	B) Follow up with a doctor	451	99.1
	C) No need for treatment	1	0.2
5- If you find someone having an acute seizure attack, what would you do?	Take them away from danger	130	31.7
	I will call an ambulance	97	23.7
	Put a spoon or a cloth in their mouth	82	20
	Force some medicine down their throat	10	2.4
	Place them on one side and hold their head down	1	0.2
	I do not know	67	16.3

Figure 3.

Reported first-aid responses during seizure episodes among participants

Discussion

This study provides important insights into parental knowledge, beliefs, and practices regarding childhood epilepsy in Riyadh, highlighting persistent misconceptions alongside areas of partial awareness.

Participants demonstrated a general awareness that epilepsy is a neurological condition; however, substantial misconceptions remain. Notably, approximately one-quarter of participants attributed epilepsy to possession by evil spirits, while others linked it to emotional or psychiatric causes. These findings are consistent with previous studies conducted in Saudi Arabia and neighboring regions.[2,3,4] These findings are comparable to studies conducted in Jeddah and Al-Qassim, where similar misconceptions regarding supernatural causes and stigma were reported, although the prevalence of such beliefs in our study remains notably high despite higher educational attainment among participants, suggesting that sociocultural and religious interpretations continue to influence understanding of epilepsy. These misconceptions may reflect sociocultural and religious interpretations of illness, which remain influential despite increasing levels of formal education. Addressing these beliefs requires culturally sensitive educational strategies that integrate medical knowledge with community values. Such beliefs may contribute to stigma and delay appropriate medical care, underscoring the need for culturally sensitive educational interventions.[5]

Perceptions regarding the curability of epilepsy were mixed. Only 37.6% of participants believed epilepsy is curable, indicating a relatively pessimistic outlook compared with studies from Abha and Iran, where higher proportions reported belief in curability.[2,3,4] Despite this, a substantial proportion of participants acknowledged the benefits of medical treatment in improving quality of life. This discrepancy suggests a partial understanding: treatment effectiveness is recognized, but long-term disease outcomes remain unclear to many parents.[16]

Although nearly half of the participants correctly identified medical treatment and follow-up as the primary management approach, a considerable proportion still endorsed alternative and unproven methods, including religious rituals and traditional remedies. In addition, awareness of advanced treatment options, such as epilepsy surgery, was limited. Misconceptions were also evident regarding vaccination safety, with many participants expressing uncertainty or incorrect beliefs about vaccine-related risks in children with epilepsy. These findings align with previous research indicating that gaps in treatment knowledge may influence healthcare-seeking behavior and adherence to evidence-based management.[13]

The study revealed important deficiencies in seizure first-aid knowledge. A notable proportion of participants reported inappropriate practices, such as placing objects in the patient’s mouth, while others were unsure of how to respond. Fear was also highly prevalent, with two-thirds of participants reporting anxiety when witnessing a seizure. Furthermore, participation in formal epilepsy education was extremely limited. These findings highlight a critical need for structured first-aid training programs targeting parents and the general public to improve immediate seizure management and reduce preventable harm.[17]

Despite generally positive attitudes towards the potential of children with epilepsy to succeed academically and socially, stigma remains evident. Many participants expressed reluctance to disclose the diagnosis, reflecting ongoing social concerns. Importantly, the coexistence of moderate awareness and persistent misconceptions—particularly regarding causation, treatment, and emergency responses suggests that current public knowledge is fragmented rather than comprehensive.[18]

This study differs from previous research in several key aspects. First, it provides updated data from Riyadh, a region with limited prior evidence despite being the most populous city in Saudi Arabia. Second, it integrates the knowledge, awareness, and practice domains into a unified analytical framework, enabling a more comprehensive understanding of parental perceptions. Third, the study highlights persistent gaps in first-aid practices, an area that has been insufficiently explored in earlier Saudi studies. These contributions offer a more holistic perspective that can inform targeted interventions at both clinical and community levels.

Limitations

This study has several limitations. First, the use of an online self-administered questionnaire introduces potential selection bias and limits generalizability. Second, the cross-sectional design precludes causal inferences. Third, reliance on self-reported data may introduce recall and social desirability bias. Finally, although efforts were made to achieve demographic representation, the sampling approach was not fully probability-based.

Conclusion

In conclusion, this study identifies significant gaps in parental knowledge and practices regarding childhood epilepsy in Riyadh, despite a generally high level of awareness of the condition. Misconceptions related to causation, curability, treatment options, and seizure management persist and may contribute to stigma and suboptimal care. While many parents recognize the potential for children with epilepsy to lead successful lives, concerns regarding social disclosure remain prevalent.

These findings highlight the need for targeted, culturally appropriate educational interventions focusing on correcting misconceptions, promoting evidence-based treatment approaches, and improving first-aid practices. Expanding access to epilepsy education and community-based awareness programs may play a key role in enhancing understanding, reducing stigma, and improving outcomes for affected children and their families.

Availability of data and materials

The datasets analyzed during the current study are available from the corresponding author upon reasonable request. Due to data protection restrictions and participant confidentiality, we do not make participant data publicly available.

Contributions

KAB substantially contributed to the conceptualization, methodology, data curation, funding acquisition, project administration and supervision, validation, drafting the first version, and critically revised the final version of the manuscript. AMA contributed to the conceptualization, methodology, data curation, formal analysis, resources, software, and visualization, and critically revised the manuscript. AAB substantially contributed to the conceptualization, methodology, Resources, and visualization, and critically revised the manuscript. YBE, MHA, ASA, KAA, and TMA have critically revised the manuscript. All authors read and approved the final manuscript.

Ethics approval and consent to participate

Written consent was obtained from all participants before data collection. All the selected respondents were assured of confidentiality and that the information gathered would be used exclusively for research purposes. All participants agreed to participate before answering the questions. The research proposal was approved by the IRB committee of Imam Mohammad Ibn Saud Islamic University (HAPO-01-R-011) session 762-2025, dated February 12, 2025.

Consent for publication

Not applicable.

Conflicts of interest

There are no conflicts of interest.

Funding Statement

Nil.