Evaluation of childhood absence seizures awareness and knowledge among parents in Saudi Arabia: A cross-sectional study

ABSTRACT

Introduction:

Childhood absence seizures (CAS) are a form of epilepsy characterized by brief episodes of unconsciousness and staring spells. Despite their prevalence and potential impact on a child’s development, awareness and knowledge about CAS among parents in Saudi Arabia remain poorly understood. This study aimed to assess parents’ awareness and understanding of CAS in Saudi Arabia.

Method:

A cross-sectional survey was conducted among parents of children recruited from various regions in Saudi Arabia. The survey included questions related to demographic information, awareness of CAS, recognition of seizure symptoms, knowledge of appropriate actions during a seizure, and sources of information about seizures.

Result:

Our results indicate a lack of awareness and understanding of CAS among parents in Saudi Arabia. A significant proportion of respondents were unable to recognize common symptoms of absence seizures, often mistaking them for behavioral issues or other medical conditions. Furthermore, many parents demonstrated uncertainty regarding appropriate first-aid measures and misconceptions about the management of seizures.

Conclusion:

These findings underscore the need for targeted educational interventions aimed at improving parental awareness and knowledge of childhood absence seizures in Saudi Arabia. Healthcare providers play a crucial role in disseminating accurate information and addressing misconceptions about epilepsy.

Introduction

Epilepsy is a chronic neurological disorder characterized by recurrent, unprovoked seizures and affects approximately 50 million people worldwide, making it one of the most common neurological conditions. Many etiological factors contribute to the development of epilepsy including genetics, head trauma, stroke, brain tumors, infections, and developmental disorders. Childhood absence epilepsy (CAE) is a prevalent form of pediatric epilepsy, often emerging between the ages of 4 and 8 years. It presents as transient episodes of altered consciousness, commonly referred to as staring spells, where the child exhibits a lack of responsiveness. These episodes last mere seconds and may occur multiple times within a day. Untreated CAE can lead to severe consequences, including cognitive impairment, social difficulties, and physical injuries during seizures. Recurrent episodes of altered consciousness disrupt a child’s learning and development, resulting in academic struggles and emotional distress[1] Public awareness and understanding of childhood epilepsy are influenced by various sociocultural factors worldwide. In Saudi Arabia, these influences are particularly shaped by cultural beliefs, social stigma, access to health education, and trust in medical authorities.[2] These factors significantly impact how parents recognize and make sense of childhood absence epilepsy (CAE) symptoms and diagnosis, necessitating comprehensive exploration of parental awareness and understanding in this region.[1,3] With improved awareness and education, communities can better empathize with affected children and families, include them socially, and provide support.[4]

Knowledge gaps in parental awareness include recognizing symptoms, understanding the nature of the condition, and determining when to seek medical help. Parents may fail to identify the subtle, fleeting seizures typical of CAE, mistaking them for daydreaming or lack of concentration. This lack of awareness often results in underdiagnosis or late diagnosis, hindering proper management of the disorder.[5] The importance of thoroughly examining parental awareness and understanding of CAE in Saudi Arabia cannot be overstated, as limited knowledge and recognition of childhood absence epilepsy can have severe consequences.[4] Therefore, assessing gaps in Saudi parental knowledge of CAE is vital to designing targeted educational efforts and interventions aimed at increasing awareness, improving early identification, and safeguarding children’s wellbeing. The merits of this study encompass laying the groundwork for tailored educational initiatives, augmenting early diagnosis rates, fortifying parental support networks, and ultimately ameliorating the well-being of children with CAE and their families. For practitioners, the findings will shed light on the specific knowledge gaps parents in Saudi Arabia have regarding CAE. This insight will allow healthcare professionals to tailor their communication and educational approaches to address these specific needs.

Therefore, assessing the gap in Saudi parental knowledge of CAE is crucial for developing targeted educational initiatives and interventions. This study will enhance awareness and improve early identification of CAE, directly benefiting practitioners by equipping them with insights to tailor their approaches. Additionally, it aims to strengthen parental support networks, ultimately enhancing the well-being of children with CAE and their families. By fostering a more informed community, we can facilitate better patient outcomes and provide practitioners with the tools necessary for effective care.

Aim: To measure the level of parents’ awareness and knowledge of childhood absence seizures in Saudi Arabia.

Methods

A cross-sectional study was conducted in various regions of Saudi Arabia from January to February 2024 using an Arabic online survey created by Google Forms. The survey creation process: 1- literature review about related topic 2- writing the initial questions and answers 3- taking expert’s opinion 4- editing the survey accordingly 5- doing pilot testing among 10 individuals. The survey was spread through all social media including WhatsApp, LinkedIn, X (Twitter), Snapchat, and Instagram to civilians of Saudi Arabia. The survey consists of four sections starting with inclusion/exclusion including the consent, with the second section assessing the demographical data followed by the third section; the knowledge of absence seizures, and finally the source of information the patient had. The inclusion criteria include parents that live in Saudi Arabia and have at least one child regardless of their age, or nationality. Those who didn’t meet the inclusion criteria were excluded.

The data were collected, reviewed, and then fed to Statistical Package for Social Sciences version 21 (SPSS: An IBM Company). All statistical methods used were two-tailed with an alpha level of 0.05 considering significance if the P value was less than or equal to 0.05. Overall knowledge and awareness levels regarding absence seizures among children were assessed by summing up discrete scores for different correct awareness items. The overall knowledge and awareness scores were categorized as a poor level if parents’ score was less than 60% of the overall score, moderate for scores ranging between 60%–79%, and a good level of knowledge was considered if the parents’ score was 80% or more of the overall score. Descriptive analysis was done by prescribing frequency distribution and percentage for study variables including parent’s personal data, children’s data, and children’s medical history. Also, knowledge and awareness regarding absence seizures among children were tabulated while overall awareness level and their source of information were graphed. Cross tabulation for showing factors associated with parents’ knowledge and awareness of absence seizures among children was carried out with Pearson Chi-square test for significance and exact probability test if there were small frequency distributions.

Result

A total of 401 eligible parents completed the study questionnaire, 301 (75.1%) were from the Western region, and others from other regions. Parents’ ages ranged from 18 to 60 years with a mean age of 41.2 ± 11.6 years old. A total of 299 (74.6%) respondents were mothers. As for education, 270 (67.3%) had a bachelor’s degree, and 102 (25.4%) had a secondary level of education or less. An exact of 221 (55.1%) were employees, while 103 (25.7%) were unemployed. Monthly income less than 5000 Saudi Riyal (SR) (~1334 usd) was reported among 34 (8.5%) respondents, 107 (26.7%) had monthly income of 5000 to 10000 SR (~1334-2667 usd), and 139 (34.7%) had income exceeding 15000 SR (~4000usd).

The vast majority of the respondents 375 (93.5%) were married [Table 1].

Table 1.

Personal characteristics of study parents, Saudi Arabia

Parent’s data	No	%
Region
Central Region	30	7.5%
Western Region	301	75.1%
Eastern Region	28	7.0%
Southern region	42	10.5%
Age in years
18–28	39	9.7%
29–39	105	26.2%
40–50	173	43.1%
51–60	84	20.9%
Gender
Male	102	25.4%
Female	299	74.6%
Education level
Secondary/below	102	25.4%
Bachelor degree	270	67.3%
Post-graduate degree	29	7.2%
Employment
Not working	103	25.7%
Student	12	3.0%
Employee	221	55.1%
Retired	65	16.2%
Monthly income
<5000 SR (~1334 usd)	34	8.5%
5000–10000 SR (~1334-2667 usd)	107	26.7%
10000–15000 SR (~2667-4k usd)	121	30.2%
>15000 SR	139	34.7%
Social status
Married	375	93.5%
Divorced/widow	26	6.5%

A total of 110 (27.4%) parents had 1–2 children, while 141 (35.2%) had 5 children or more. As for the age of the youngest child, 172 (42.9%) reported 4–5 years and 153 (38.2%) reported 10–14 years old. Approximately 372 (92.8%) said that both parents share in child raising, and 29 (7.2%) of those with no shared parents live with mothers only. Only 15 (3.7%) parents had a child suffering from intellectual disability and 11 (2.7%) had a child diagnosed with absence seizures [Table 2].

Table 2.

Children data reported by the study parents, Saudi Arabia

Children data	No	%
Number of children
1–2	110	27.4%
3–4	150	37.4%
5+	141	35.2%
Mean±SD	3.8±1.9
Age of youngest child (years)
4–5	172	42.9%
6–9	76	19.0%
10–14	153	38.2%
Mean±SD	8.1±3.9
Are both parents sharing in child raising
Yes	372	92.8%
No	29	7.2%
If not, with whom the child live?
Both parents	1	3.4%
Mother only	24	82.8%
Father only	3	10.3%
Others	1	3.4%
Does your child suffer of intellectual disability
Yes	15	3.7%
No	386	96.3%
Do you have a child diagnosed with absence seizures?
Yes	11	2.7%
No	390	97.3%

Knowledge and awareness of parents about absence seizures among children. A total of 49.6% of the study parents heard of absence epileptic seizures, but only 14.7% think it has a good outcome if treated properly. Also, only 6.5% know that females are more affected by CAE, and 37.7% know that children are the most affected age. Regarding causes of CAE, genetic propensity was known by 30.2% of the study parents. As for triggers of CAE, the most known was «Not taking medications as instructed by your healthcare provider» (21.4%), followed by lack of sleep (11.5%), Sounds, bright lights, bright sunlight (8.5%), and breathing heavily (7%) while 31.7% mentioned all of those factors. A total of 50.1% know that a history of febrile seizures (convulsions that occur in a child due to high temperature) increases the risk of CAE and 53.9% think that a family history of CAE plays a role in the development of the disease. Regarding factors related/describe CAE, the most known by the parents included “Brief spells of loss of awareness (4-30 seconds)” (37.9%), “Child does not recall incidence” (23.4%), “Child returns to normal after the episodes” (18.2%), “Starts with staring episodes” (16.2%), “Eye fluttering accompanies the episodes” (15.7%), and “Mouth movement accompanies the episodes” (15%). Neurology as the best medical field to deal with children with CAE was reported by 46.1% of the study parents and 60.3% know that medications are needed to treat a patient with a CAE [Table 3].

Table 3.

Knowledge and awareness of parents about absence seizures among children in Alahsa, Saudi Arabia

Knowledge items		No.	%
Familiriaty of absence epileptic seizures	Yes	199	49.6%
	No	202	50.4%
Perception of CAE	Good outcome if treated properly	59	14.7%
	It is naturally present in children and will go away over time	34	8.5%
	A medical condition affecting the brain	152	37.9%
	A life-threatening condition for the patient	62	15.5%
	Others	6	1.5%
	I don’t know	158	39.4%
Prevalence of CAE in different genders	Female	26	6.5%
	Male	26	6.5%
	Both	137	34.2%
	I don’t know	212	52.9%
Prevalence of CAE in different ages	Childhood	151	37.7%
	Adult	54	13.5%
	Elderly	8	2.0%
	I don’t know	188	46.9%
Causes of CAE	Genetic propensity	121	30.2%
	Parents neglect	20	5.0%
	Video games	81	20.2%
	Neglecting education	2	0.5%
	Unknown cause	110	27.4%
	I don’t know	185	46.1%
Triggers CAE	Not taking medications as instructed by your healthcare provider	86	21.4%
	Lack of sleep	46	11.5%
	Sounds, bright lights, bright sunlight	34	8.5%
	Breathing heavily	28	7.0%
	All of the above	127	31.7%
	I don’t know	170	42.4%
Knowledge regarding febrile seizures (convulsions that occur in a child due to high temperature) and its risk associated with CAE	Yes	201	50.1%
	No	18	4.5%
	I don’t know	182	45.4%
Role of family history in CAE	Yes	216	53.9%
	No	25	6.2%
	I don’t know	160	39.9%
Knowledge regarding CAE	Brief spells of loss of awareness (4-30 seconds)	152	37.9%
	Child does not recall incidence	94	23.4%
	Child returns back to normal after the episodes	73	18.2%
	Starts with staring episodes	65	16.2%
	Eye fluttering accompanies the episodes	63	15.7%
	Mouth movement accompanies the episodes	60	15.0%
	The child can not be awaken from the episodes with distraction	38	9.5%
	Comes and goes in episodes (10-30 A day)	27	6.7%
	I done know	183	45.6%
Medical field that deals with CAE	Neurology	185	46.1%
	Psychiatric	7	1.7%
	Pediatrics	19	4.7%
	All of them	133	33.2%
	I don’t know	57	14.2%
Knowledge regarding treatment of CAE	Medication	242	60.3%
	Attention of parents and teachers	169	42.1%
	Psychotherapy	40	10.0%
	Relieve with itself	10	2.5%
	I don’t know	85	21.2%

In regards to the overall parents’ awareness and knowledge of CAE [Figure 1]. A total of 334 (83.3%) had an overall poor knowledge about CAE, 56 (14%) had moderate knowledge level and only 11 (2.7%) had good knowledge level. With regard to their source of knowledge [Figure 2], the most reported sources were social media (19.5%), relatives / friends (15.5%), doctors (10.7%), heath education campaigns (8.7%), TV (4.2%), and school / university (2.2%). Exact of 31.7% had no specific source of information.

Figure 1.

Overall parents’ awareness and knowledge Towards Absence Seizures Among Children in Alahsa, Saudi Arabia

Figure 2.

Parents source of information about Absence Seizures Among Children in Alahsa, Saudi Arabia

About the factors associated with parents’ overall knowledge about Absence Seizures Among Children. A total of 31% of parents with post-graduate degrees had an overall moderate-to-good knowledge level compared to 7.8% of others with low education with a recorded statistical significance (P = 0.005). Also, 23.7% of parents with the youngest child aged 6–9 years had moderate to good knowledge versus 14% of others who have children aged 4–5 years (P = 0.049). Good knowledge about CAE was detected among 30.6% of parents who gained their information from relatives/friends compared to 27.9% who reported to doctors and only 2.4% with those who had no specific source (P = 0.001) [Table 4].

Table 4.

Factors associated with parent’s overall knowledge about Absence Seizures Among Children

Factors		Knowledge level				P
		Poor		Moderate/good
		No.	%	No.	%
Region	Central Region	23	76.7%	7	23.3%	0.546^
	Western Region	252	83.7%	49	16.3%
	Eastern Region	22	78.6%	6	21.4%
	Southern region	37	88.1%	5	11.9%
Age in years	18–28	34	87.2%	5	12.8%	0.789
	29–39	86	81.9%	19	18.1%
	40–50	146	84.4%	27	15.6%
	51–60	68	81.0%	16	19.0%
Gender	Male	86	84.3%	16	15.7%	0.749
	Female	248	82.9%	51	17.1%
Education level	Secondary/below	94	92.2%	8	7.8%	0.005*
	Bachelor degree	220	81.5%	50	18.5%
	Post-graduate degree	20	69.0%	9	31.0%
Employment	Not working	88	85.4%	15	14.6%	0.740^
	Student	11	91.7%	1	8.3%
	Employee	181	81.9%	40	18.1%
	Retired	54	83.1%	11	16.9%
Monthly income	<5000 SR	28	82.4%	6	17.6%	0.093^
	5000–10000 SR	96	89.7%	11	10.3%
	10000–15000 SR	102	84.3%	19	15.7%
	> 15000 SR	108	77.7%	31	22.3%
Number of children	1–2	96	87.3%	14	12.7%	0.412
	3–4	122	81.3%	28	18.7%
	5+	116	82.3%	25	17.7%
Age of youngest child (years)	4–5	148	86.0%	24	14.0%	0.049*
	6–9	58	76.3%	18	23.7%
	10–14	128	83.7%	25	16.3%
Both parents sharing in child-raising	Yes	309	83.1%	63	16.9%	0.662
	No	25	86.2%	4	13.8%
Intellectual disability	Yes	11	73.3%	4	26.7%	0.292
	No	323	83.7%	63	16.3%
A child diagnosed with absence seizures	Yes	8	72.7%	3	27.3%	0.341
	No	326	83.6%	64	16.4%
Source of information about CAE	Doctors	31	72.1%	12	27.9%	0.001*^
	Social media	60	76.9%	18	23.1%
	Relatives/friends	43	69.4%	19	30.6%
	TV/newspapers	16	94.1%	1	5.9%
	Health education campaigns	25	71.4%	10	28.6%
	School/University	7	77.8%	2	22.2%
	Others	28	93.3%	2	6.7%
	No source	124	97.6%	3	2.4%

P: Pearson χ² test: Exact probability test *P<0.05 (significant)

Discussion

In this study, we aimed to assess parental awareness, knowledge, and attitudes regarding childhood absence seizures (CAE) in Saudi Arabia. A total of 401 parents participated, predominantly from the western region (75.1%), reflecting a different demographic distribution. Most respondents were mothers (74.6%), with a mean age of 41.2 years. Education level played a significant role in parents’ knowledge levels, with 31% of those with post-graduate degrees showing moderate to good knowledge compared to only 7.8% among those with lower education levels (P = 0.005). Social media emerged as the most common source of information about CAE among parents (19.5%), followed by relatives/friends (15.5%) and doctors (10.7%). The findings revealed a concerning lack of awareness about CAE among the surveyed parents, with 83.3% demonstrating poor knowledge levels. Only a small minority (2.7%) exhibited good knowledge, indicating a significant gap in understanding this condition.

Regarding knowledge and awareness, the findings of our study highlighted the limited awareness and knowledge among parents regarding absence seizures among children in Saudi Arabia. Despite the relatively large sample size, only a small proportion demonstrated good knowledge about absence seizures (2.7%). The majority exhibited poor knowledge (83.3%), indicating a significant deficiency in understanding this condition, whereas a moderate level of knowledge was observed in 14% of participants, consistent with findings from a study in the Abha city of Saudi Arabia.[4] Notably, only 11 individuals (2.7%) showed a high level of knowledge. Moreover, a mere 6.5% of parents possessed the awareness that females exhibit a higher propensity for experiencing absence seizures, indicating a gender bias. This awareness is pivotal for facilitating accurate diagnosis and early identification.

Our study also revealed a lack of knowledge regarding the causes and initiators of absence seizures. A genetic predisposition was known to 30.2% of parents, but nothing was known about other contributing factors such as medication noncompliance, sleep deprivation, and sensory stimulation. A study in Germany and Austria utilized the FAMOSES (modular service package epilepsy for families) educational program for parents of children with epilepsy. The program emphasized interactive learning and information sharing to assist parents in managing their child’s epilepsy, reduce associated anxiety, and improve seizure management outcomes.[6]

Furthermore, approximately 67.7% of families in the Al Baha region of Saudi Arabia lacked clarity about the causes of epilepsy highlighting the importance of spreading awareness in the kingdom. In terms of parents’ educational background, our research revealed a significant correlation between parents’ educational attainment and their familiarity with absence seizures. Greater knowledge was shown by parents with higher education levels than by parents with lower education levels, especially by those with postgraduate degrees. This finding contradicts a previous study where no significant association was observed between parents’ awareness and their educational level.[7]

In terms of the information channels regarding parents’ comprehension of absence seizures, social media emerged as the primary source in our study, followed by friends, family, and medical professionals. Interestingly, this differed from findings in Jeddah, Saudi Arabia, where 70% had learned about epilepsy from friends and 46% from relatives.[8] This underscores the diverse influences that different sources can have on parental understanding of their children’s health conditions.

We conclude our findings that underscore the pressing need for improved awareness and knowledge among parents in Saudi Arabia concerning absence seizures in their children. A significant number of parents exhibited limited awareness and knowledge of this condition and its underlying causes, with education levels appearing to correlate with awareness levels hence highlighting the crucial importance to empower Saudi Arabian families with children experiencing absence seizures through strategies focused on enhancing awareness and knowledge. Moreover, healthcare providers in the kingdom should prioritize educating parents about absence seizures during regular clinical visits, offering concise information on the disorder, its symptoms, triggers, and management strategies.

This could involve the development and distribution of informative resources such as leaflets or brochures in clinics, hospitals, and community centers as a study conducted at King Fahad Medical City in Riyadh demonstrated that educational interventions significantly improved caregivers’ knowledge of epilepsy in children.[9] Lastly, Policymakers and healthcare professionals can help improve the lives of Saudi Arabian youngsters suffering from absence seizures by filling in these knowledge gaps.

In addition, focused health education efforts that emphasize educating parents about absence seizures must be carried out. Television, radio, and social media highlighting the value of early identification, appropriate treatment, and the accessibility of support services could be a part of these efforts. These entities offer parents a platform to interact, share experiences, and access reliable information pertaining to absence seizures. By fostering a supportive community, families can receive emotional assistance and valuable insights into effectively managing the condition, as demonstrated in a clinical trial evaluating the substantial benefits of a family-centered empowerment program on the quality of life of mothers with children affected by epilepsy.[10]

While our study provides valuable insights into parental awareness, knowledge, and attitudes regarding CAE in Saudi Arabia, it has certain limitations. The relatively modest sample size may limit the generalizability of our findings. Additionally, the lack of prior validation of our questionnaire. Future studies with larger sample sizes and validated questionnaires are needed to confirm and expand upon our findings. Longitudinal studies could track changes in parental knowledge and attitudes over time. Intervention studies could evaluate the effectiveness of educational programs designed to improve parental understanding of CAE. Finally, exploring regional variations in parental knowledge and attitudes could provide valuable insights into the factors influencing these outcomes.”

Ethical issues

This study was conducted without any interventions, experiments, or adjustments to the patients’ treatment plans. The authors declared that the study was conducted without going beyond standard practice. They also declared that the study had no negligible risk or burden. Ethical Approval was obtained from King Faisal University.

(KFU-REC-2024-FEB-ETHICS1991)

Conflicts of interest

There are no conflicts of interest.

Funding Statement

Nil.