Parental Knowledge and Perceptions of the First Episode of Seizure in Children: A Single-Center Cross-Sectional Study

Abstract

Introduction:

Seizures in children are distressing events for caregivers, particularly when occurring for the first time. Parental knowledge and perceptions significantly influence the timeliness of medical intervention, pre-hospital management, and clinical outcomes.

Objectives:

This study aimed to assess parental knowledge and perceptions regarding their child’s first seizure episode, identify gaps in understanding, and explore factors associated with misconceptions and delays in seeking medical care.

Methods:

A cross-sectional survey was conducted among parents of children presenting to the emergency department with a first-time seizure.

Results:

Among 100 respondents, 74% correctly identified seizure symptoms. However, none reported performing appropriate pre-hospital interventions or demonstrated knowledge of seizure-specific first-aid measures. Additionally, higher parental education was significantly associated with better knowledge scores (P < .05).

Conclusion:

This study reveals gaps in parental knowledge and a high prevalence of misconceptions related to pediatric seizures. These findings underscore the need for targeted educational interventions to improve caregiver responses and enhance care.

Introduction

A seizure occurs when there are abnormal, excessive, and hypersynchronous neuronal discharges in the brain, which may result in a paroxysmal alteration in neurologic function and a change in the level of awareness. ¹ Epilepsy, characterized by recurrent and unprovoked seizures, represents one of the most common neurological conditions in children, with the highest incidence reported during the first year of life.^1,2 Seizures provoked by a reversible insult such as infection, fever, hypoglycemia, or head trauma are not classified as epilepsy, as they reflect a secondary response rather than a chronic condition. Children with epilepsy are likely to experience emotional and behavioral challenges, as well as struggles with social interaction, all of which can adversely affect their overall quality of life.^3,4

Seizures, particularly in a child who has never had one before, can be a frightening and distressing experience for parents and caregivers.^5,6 Although previous studies have assessed the knowledge and perceptions of parents of children with established epilepsy, there is limited literature available addressing the knowledge, attitudes, and practices of parents encountering their child’s first seizure episode.^{7 -10} Understanding parental awareness regarding the etiology of seizures, appropriate first-aid responses, and long-term prognosis enables physicians to offer targeted counseling. This approach can lead to better management of seizures and, in cases of recurrence, contribute to enhanced outcomes and quality of life for affected children.

To address this gap, we conducted semi-structured interviews with parents and caregivers who had recently witnessed their child’s first seizure. We aimed to explore their perceptions and understanding of seizures, identify fears and misconceptions, and provide education on preventative measures and actions to take during a seizure if prevention fails.

Methodology

This cross-sectional, descriptive, single-center study was conducted at the Department of Pediatrics of an urban tertiary care medical center in Delhi, India.

Figure 1 outlines the study enrollment process, including the number of participants screened, excluded, and included. The study included parents of children aged 6 to 144 months (12 years) who presented to the pediatric emergency department with their first seizure episode. Children with congenital anomalies were excluded from the study. Parents were required to possess adequate language proficiency to comprehend and respond to the questions accurately. Individuals who could not read or write were included if they were able to understand and communicate verbally in the language used during interviews.

Figure 1.

Study enrollment flowchart showing the number of participants screened, excluded, and included in the final analysis.

A semi-structured questionnaire was administered to the parents to gather data. The questionnaire collected demographic information, including the child’s age and sex, the parents’ age, educational status, family size, and income. Open-ended questions were included to gain a more comprehensive understanding of the parents’ perceptions of seizures. The semi-structured questionnaire used in this study was pilot tested to assess clarity, relevance, and comprehensibility. Modifications were made based on feedback prior to its use in the main study. To ensure consistency, a single investigator conducted all participant interviews. When both parents were present, they were asked to decide who would provide the responses. At the end of the questionnaire, the parents were educated about seizures, preventative measures, and actions to take during a seizure if prevention fails.

Statistical Analysis

Data was analyzed using SPSS version 17. Demographic characteristics of the study participants were presented as frequencies, and responses to various questions were reported as percentages. The Chi-square and Fisher’s exact tests were applied to assess the relationship between parents’ responses, educational status, and other applied parameters.

Ethical Approval and Informed Consent

The study was approved by the participating medical center’s Institutional Ethics Committee-Human Research (IEC-HR). A formal certificate of approval was obtained before initiating the study. Participation was voluntary, and written informed consent was obtained from all the participating parents.

Results

The study involved parents of 100 children who arrived at the pediatric emergency department of a tertiary care hospital with their first seizure. The age and sex distribution of these children are shown in Table 1.

Table 1.

Characteristics of Children with First Seizure Episode.

	N (%)
Age (months)
6-36	44 (44%)
37-60	20 (20%)
61-84	8 (8%)
85-120	21 (21%)
121-144	7 (7%)
Sex
Male	62 (62%)
Female	38 (38%)

Parents were interviewed within 24 hours of admission, with most of the questionnaires completed by mothers (90%) and only 10% by fathers, usually when the mother was unavailable. Table 2 displays the age and educational status of the parents of these children.

Table 2.

Characteristics of Parents.

	Father	Mother
	N (%)	N (%)
Age (years)
<25	6 (6%)	17 (17%)
25-35	69 (69%)	71 (71%)
>35	25 (25%)	12 (12%)
Education
Illiterate	15 (15%)	47 (49%)
Primary	26 (26%)	29 (29%)
Secondary	50 (50%)	21 (21%)
Graduate	9 (9%)	3 (3%)

Among the participants, 22% were from rural areas, and 78% were from urban areas. 70% were from Delhi, while 30% were from outside of Delhi.

The most common type of seizure for which the child was admitted was a generalized tonic-clonic seizure (GTCS; 57%), followed by a partial seizure (43%).

When the seizure occurred, 81% of the children were awake, while 19% were asleep. Upon arriving at the hospital, 50% were conscious, and 50% were unconscious. Only 17% received any medication prior to seizure onset or hospital arrival, while 83% did not. A family history of seizures was present in just 5%, and only 2 children out of 100 had a developmental abnormality.

Data on household income were collected; however, several participants either declined to provide this information or were unsure, particularly when only the mother was present. Due to the missing responses, income was excluded from the correlation analysis.

Parents’ Emotions and Interventions Performed at the Time of the First Seizure

At the time of their child’s first seizure, the majority of the parents felt fear, with 89% feeling frightened, 8% worried, and 3% confused. Regarding interventions, 65% of the parents did not take any action before bringing their child to the hospital. Among those who did intervene, 7% attempted to shake their child, while 28% gave their child water.

The reported potential emotional impacts on parents after witnessing their child’s first seizure were insomnia (64%), followed by anxiety (24%) and self-blame (12%). In terms of their concerns regarding seizures, 52% of the parents felt that seizures could lead to brain damage. Other worries included insomnia (22%), death (17%), and anorexia due to the inability to eat food (9%).

Parents’ Knowledge and Perceptions About Seizures

None of the parents knew about the different seizure types, causes, or appropriate first aid. Table 3 summarizes parent’ responses on seizure recognition, causes, perceived impact on their child’s life and relationship, and first aid practices.

Table 3.

Parental Knowledge, Perceptions, and Misconceptions Regarding First Childhood Seizure.

Category	Response	Percentage
Recognition of seizures	Correctly recognized a seizure	74
	Misinterpreted as an alteration of sensorium	23
	Misinterpreted as a reaction to a drug	3
Beliefs about the hereditary nature of seizures	Did not believe that all seizures are inherited or run in families	40
	Unsure if all seizures are inherited or run in families	60
Knowledge of cause	Correctly identified abnormal brain discharge as the cause	9
	Believed seizures were not caused by abnormal brain discharge	7
	Unsure of the cause	84
Perceived impact	Believed seizures could affect schooling	50
	Believed seizures might affect future marriage	6
	Believed seizures could harm family/relative relationships	2
Beliefs about recurrence	Believed seizures would recur	55
	Believed seizures would not recur	4
	Unsure about recurrence	41
First aid measures	Thought they should hold the child to stop their movement	4
	Did not know what to do	85
	Suggested giving or spraying water on the child’s face	11

Influence of Paternal Education on Knowledge and Perceptions

Higher paternal education was associated with:

• A greater recognition that not all seizures are inherited, with a decrease in “unsure” responses (P < .001).

• Improved understanding that seizures are caused by abnormal brain discharges (P < .001).

• A decrease in “don’t know” responses when asked about appropriate actions to take during a seizure (P = .009).

• A higher likelihood of acknowledging the possibility of seizure recurrence (P = .001).

Influence of Maternal Education on Knowledge and Perceptions

Higher maternal education was associated with:

• Fewer mothers reported taking no action before bringing their child to the hospital (P = .01).

• Greater recognition that not all seizures are inherited, with a decrease in “unsure” responses (P < .001).

• A decrease in “don’t know” responses when asked about appropriate actions to take during a seizure (P = .001).

• A higher likelihood of acknowledging the possibility of seizure recurrence, with a decrease in “don’t know” responses (P = .002).

Other Findings

• There was no significant effect of the father’s age, mother’s age, or family size on the parents’ knowledge and perceptions about their child’s first seizure episode (P > .05).

• The child’s age did not influence the findings (P > .05).

Discussion

Seizures and epilepsy are among the most common neurological disorders in the pediatric population, significantly impacting the quality of life for both children and their parents. This study explored how parents perceive and respond to their child’s first seizure episode, focusing on their emotional reactions, experiences, and understanding of the event. In our study, 90% of the participants were mothers, highlighting their role as primary caregivers. The primary type of seizure observed was GTCS, followed by partial seizures, aligning with existing literature indicating that GTCS are the most common seizure type encountered in emergency departments. ¹¹

Parents’ Emotions and Interventions Performed at the Time of the First Seizure

Consistent with previous research, the majority of parents in our study reported experiencing intense fear during their child’s first seizure.^{12 -14} Parents reported insomnia and anxiety as potential post-seizure responses and emotional effects on them, mirroring findings indicating that caregivers often experience sleep disturbances and heightened anxiety following febrile convulsions.^{13,15 -18}

Parental interventions during the seizure were often limited and inappropriate, with most of the parents not attempting any intervention or some resorting to actions such as giving water or shaking the child. Similar unadvised practices have been documented among uninformed parents, such as using mouth gags, reciting religious texts during the episode, making children smell onions, and the oral administration of cold water. ¹⁹

In the present study, parental concerns primarily focused on the potential risks of brain damage, insomnia, and even death – fears commonly reported in the literature, along with worries including the seizures occurring overnight, while the child is away from home, and the possibility of seizure recurrence.^{20 -24}

Parents’ Knowledge and Perceptions About Seizures

In our study, while most parents identified a seizure correctly, a significant proportion misinterpreted it as an altered sensorium or a drug reaction—an observation consistent with previous studies reporting confusion with fever-induced shivering, fainting, or lethargy. ²⁵ These findings suggest that the varied semiology of seizures strongly contributes to parental confusion during initial episodes, which may, in turn, delay appropriate medical treatment. In a study involving interviews with 142 parents of children who experienced either a first or recurrent seizure, 70% of parents without prior exposure to seizures failed to recognize their child’s first seizure episode. In contrast, only 54% of those who had previously witnessed a seizure could correctly identify it as such. ¹⁴

In a study, among parents who had previously consulted a physician regarding a seizure episode and were advised on seizure management, only 9% of parents recalled receiving instructions to administer per-rectal diazepam for seizure cessation; none of them reported using the intervention due to fear and lack of practical knowledge on how to administer the medication. ¹⁹

Regarding seizure etiology, only a few parents correctly identified abnormal brain discharge as the primary cause of seizures, while the majority remained uncertain. Previously published studies have documented similar knowledge deficits, with some parents believing that it can be attributed to supernatural influences such as evil spirits or mental illness, often leading them to seek religious, spiritual, or traditional remedies.^24,26 Additionally, some parents believed that fever could not be a potential seizure trigger, reflecting further gaps in understanding. ¹³

In the present study, parents believed that seizures could negatively affect their child’s education, with additional concerns expressed about potential impacts on family relationships and future marital prospects. These findings are consistent with existing literature documenting the broader implications of seizures on both children and their families, including financial strain, disruption of daily routines, social withdrawal, and impaired peer relationships.^{6,22,23,27,28} Overprotection and activity restrictions, particularly in sports and travel, were commonly reported responses among parents.^{6,22 -24,27,29,30}

Parents and caregivers have described various coping strategies to manage their fears and concerns about their child’s seizures, including making an effort to maintain a normal lifestyle, adopting an optimistic mindset,^28,29 comparing their child’s epilepsy to more severe or debilitating conditions, ²⁹ connecting with other parents and caregivers of children with epilepsy, and seeking comfort through religious or spiritual practices.^22,24,27 Furthermore, some caregivers expressed concerns about the social stigma and differential treatment associated with seizures and epilepsy, fearing negative impacts on their child’s self-esteem and social interactions. ³¹ These challenges, rooted in misconceptions, can result in emotional distress and social isolation for both the child and the family.

Influence of Parental Education on Knowledge and Perceptions

Higher levels of parental education were associated with increased acknowledgment of the potential for seizure recurrence and fewer misconceptions regarding hereditary risks. Although fewer mothers reported taking no action before bringing their child to the hospital, the frequent use of inappropriate interventions highlights the ongoing need for improved education on pre-hospital seizure management. A decrease in “don’t know” responses among more educated parents indicates greater overall awareness, though inaccuracies in knowledge may remain. Previous studies have shown that individuals from higher socio-economic backgrounds exhibit greater awareness of febrile convulsions and associated preventive measures.^13,32 Additionally, higher education and income levels among parents have been linked to more positive attitudes and behaviors toward children with seizures and epilepsy.^26,33

Limitations

While our findings offer valuable insights, certain limitations must be addressed. First, since the data collected was primarily qualitative and based on self-reported perceptions, there is a risk of recall bias and inaccurate reporting. Second, the cross-sectional design limits the ability to infer causality or assess changes in knowledge and attitudes over time. Third, interviewer bias may have influenced participants’ responses, and the timing of these interviews—potentially during periods of emotional stress—could have affected the accuracy or openness of those responses.

Additionally, the questionnaire used was not a validated tool, although it was pilot tested. This may affect the generalizability and reproducibility of the findings. Finally, incomplete reporting of the household income limited the ability to explore potential correlations between socioeconomic status and parental perceptions.

Implications

The findings of this study reveal significant gaps in parental knowledge regarding childhood seizures, with widespread misconceptions related to etiology, prognosis, and management contributing to emotional distress within families. Higher levels of parental education were associated with improved understanding, underscoring the importance of targeted, point-of-care educational interventions for families experiencing a child’s first seizure. Visual aids and counseling sessions can help improve retention of practical skills, while stress-reduction techniques and psychological support can mitigate fear-driven responses like insomnia or anxiety. Furthermore, strengthening parent-physician communication through ongoing dialogue and written guidance is essential in aligning clinical advice with parental concerns and improving overall care outcomes.

This study highlights the need for future longitudinal studies to reassess parental knowledge and response following standardized education and subsequent seizure episodes, allowing for evaluation of educational effectiveness and impact on caregiver behavior.

Conclusion

This study examines the emotional responses, perceptions, and knowledge levels of parents during their child’s first seizure episode. The findings highlight critical gaps in awareness and preparedness, emphasizing the need for comprehensive interventions that integrate caregiver education, psychological support, and community engagement. Such multifaceted approaches are essential to improve timely seizure recognition and management, promote informed parental decision-making, and ultimately enhance the quality of life for children with seizures worldwide.