Assessment of Parents' Knowledge about Home Management of Children with Epilepsy

INTRODUCTION

       Epilepsy is one of the most significant chronic illnesses globally, affecting approximately 70 million people. It is a brain disorder that negatively impacts cognition, behavior, and other aspects of human functioning, often resulting in changes in body movement and awareness (Fukao et al., 2023). The underlying etiology of epilepsy remains unclear in about 80% of cases. Estimates suggest that 50-70 million people worldwide have epilepsy, with 4.6 million new cases reported annually (Jebur et al., 2021). In developing countries, the prevalence of epilepsy may be underestimated due to the misclassification of partial seizures as total seizures (Ali & Ali, 2016). Neurological disorders account for 3% of global Disability-Adjusted Life Years (DALYs), with epilepsy contributing 25% to this category. Between 1990 and 2010, all-age DALYs for neurological diseases increased by 51.6%, with a 30.2% increase for epilepsy specifically (Kyu et al., 2018). Epilepsy represents 1.6% of the total global disease burden, with more than three-fourths of epilepsy cases occurring in resource-poor, developing countries. In contrast to developed nations, significant causes of epilepsy in developing countries include neurocysticercosis and perinatal asphyxia (Kumar et al., 2019). Limited access to healthcare, insufficient knowledge, and prevalent myths contribute to the inadequate care of children with epilepsy (Reilly et al., 2019).

Epilepsy not only affects the individual but also has significant implications for the entire family, particularly parents, who are at higher risk for mental health issues, sleep disturbances, and fatigue. The impact of a mother’s mental health on a child’s quality of life is particularly profound in the first two years following diagnosis (Elmohalem et al., 2020). Nurses play a critical role in managing epileptic children and educating parents. Home management of seizures, which includes minimizing harm during seizures and administering appropriate medication, is a crucial nursing responsibility (Shasha et al., 2022).

AIMS OF THE STUDY

The study aims to explore the factors that increase the exposure of pregnant women living in Kirkuk City to miscarriage.

METHOD

 Study Design:

This study utilized a cross-sectional descriptive design to assess the knowledge of parents regarding the home management of children with epilepsy. This design was chosen as it allows for data collection at a single point in time, providing a snapshot of the current level of parental knowledge in the target population.

Ethical Considerations:

Ethical approval for the study was obtained from the National Research Ethics Committee to ensure ethical standards were met. All participants were informed of the study's purpose, procedures, potential risks, and benefits. Informed consent was obtained from each participant before participating in the study to safeguard their autonomy and rights. Participants were assured of the confidentiality and anonymity of their responses.

Sample and Sampling:

The study employed a non-probability convenience sampling technique to select participants. A total of 40 parents of children diagnosed with epilepsy were recruited from the Middle Euphrates Center for Neurological Science/Al-Zahra Teaching Hospital. Convenience sampling was utilized due to the accessibility and availability of participants at the selected site. Although this method may limit the generalizability of the findings, it was deemed appropriate given the study's exploratory nature.

Data Collection:

Data were collected between August 2022 and May 2023 using a structured questionnaire administered through individual interviews. The interview format was selected to facilitate a more in-depth understanding of the participant's knowledge and to clarify any ambiguities in their responses. Each interview was conducted in a private setting within the hospital to ensure participant comfort and privacy. Data was collected by trained research assistants to ensure consistency and reliability in administering the questionnaire.

Study Instrument:

The study instrument was a structured questionnaire developed based on a comprehensive review of relevant literature and previous studies. The questionnaire consisted of two main sections:

1. Socio-Demographic Information: This section gathered data on participants' age, gender, place of residence, level of education, occupation, monthly income, and family structure (nuclear or extended).
2. Knowledge Assessment: This section assessed parents' knowledge across three critical domains:
   • Epilepsy Treatment: Knowledge about medication management, adherence, and side effects.
   • Preventive Measures During a Seizure: Actions to take during a seizure to ensure the child's safety.
   • Preventive Measures After a Seizure: Post-seizure care to prevent complications.

Each domain consisted of specific items, and participants' responses were scored to evaluate their knowledge level.

Instrument Reliability and Validity:
To ensure the reliability of the questionnaire, a pilot study was conducted with a small sample of participants similar to the study population. The internal consistency of the knowledge assessment section was measured using Cronbach's alpha coefficient, which yielded a value of 0.72, indicating acceptable reliability. Additionally, content validity was established through expert review, where the questionnaire was evaluated by a panel of neurologists and nursing experts to ensure that it adequately covered the essential aspects of epilepsy management.

Statistical Analyses:
Data were analyzed using both descriptive and inferential statistical methods. Descriptive statistics, including frequencies, percentages, means, and standard deviations, were used to summarize the participants' socio-demographic characteristics and knowledge levels. Inferential statistics, specifically Analysis of Variance (ANOVA), were employed to explore associations between the overall knowledge scores and participants' demographic variables. The level of statistical significance was set at p < 0.05.

The data analysis was performed using Statistical Package for the Social Sciences (SPSS) software version 26.0 to ensure the accuracy and reliability of the statistical results.

RESULTS

Demographic Characteristics

Table 1 presents the descriptive statistics of the parents' demographic data. The majority of the participants were aged between 35 and 46 years (62.5%), followed by those aged 23-34 years (20.0%) and 47-58 years (17.5%). Regarding gender distribution, 65.0% of the respondents were female, while 35.0% were male. Educationally, the highest proportion of parents had an intermediate school degree (37.5%), followed by those who did not read and write (15.0%), primary school (15.0%), secondary school (15.0%), and smaller percentages held institute (5.0%) and college degrees (5.0%). In terms of occupational status, the majority were jobless or homemakers (57.5%), followed by employed (20.0%), free job (17.5%), and retired (5.0%). Most parents resided in urban areas (77.5%) compared to rural areas (22.5%). Regarding monthly income, 52.5% reported insufficient income, 27.5% barely sufficient, and 20.0% sufficient. Additionally, 70.0% of the families were nuclear, while 30.0% were extended families.

Assessment of Parents' Knowledge About Home Management of Epilepsy

Table 2 illustrates each item's mean scores (MS) and standard deviations (SD), assessing parents' knowledge across three domains: epilepsy treatment and preventive measures during and after a seizure.

Epilepsy Treatment:
Parents demonstrated poor knowledge in this domain, with mean scores ranging from 1.05 to 1.25 for most items. Specifically, items related to stopping treatment due to perceived stability (MS = 1.05), altering treatment schedules based on the child's condition (MS = 1.10), doubling doses after missed doses (MS = 1.15), and stopping treatment when seizures increase despite adherence (MS = 1.15) all received poor assessments. Only item 4 ("In case of forgetting more than one dose, consult the doctor") achieved a good assessment (MS = 2.88), and item 6 regarding side effects (MS = 2.73) was rated as moderate.

Preventive Measures During a Seizure:
Knowledge in this domain varied between poor and moderate. Most items scored poorly, such as restricting and controlling the child's movement during convulsions (MS = 1.23) and interventions like giving water or medicine during a seizure (MS = 1.15). However, measures like placing the child on one side with a tilted head (MS = 2.22), knowing the dosage of seizure medications (MS = 2.12), transferring the child to a hospital if seizures persist (MS = 2.23), removing hard and sharp objects from the vicinity (MS = 2.12), and not insisting on opening the child's mouth (MS = 2.75) were rated as moderate to good.

Preventive Measures After a Seizure Ends:
This domain showed a mix of poor and good knowledge. Items such as placing the child on their side to prevent aspiration (MS = 2.90), verifying the absence of injuries (MS = 3.00), ensuring no breathing difficulties (MS = 3.00), addressing fatigue and fear (MS = 2.85), and recording seizure details (MS = 2.78) received good assessments. Conversely, leaving the child alone until full consciousness (MS = 1.10) and giving water or food immediately after the seizure (MS = 1.13) were rated poorly. Providing artificial respiration if breathing becomes difficult post-seizure (MS = 1.63) was assessed as poor to moderate.

Overall, the parents exhibited poor knowledge in the epilepsy treatment domain and moderate to good knowledge in preventive measures during and after seizures.

Overall Knowledge Assessment

Table 3 summarizes the mean scores and assessments for each knowledge domain and the overall knowledge of parents regarding home management of epilepsy. The treatment domain had a mean score of 1.51 (SD = 0.47), categorized as poor. Preventive measures during a seizure had a mean score of 1.86 (SD = 0.41), and preventive measures after a seizure had a mean score of 2.21 (SD = 0.31), both categorized as moderate. The overall knowledge of parents was assessed as moderate, with a mean score of 1.86 (SD = 0.39).

Association Between Knowledge and Demographic Variables

Table 4 presents the results of the ANOVA tests examining the association between overall parents' knowledge and various demographic factors. The analysis revealed no significant associations between overall knowledge scores and demographic variables (p > 0.05 for all comparisons). Specifically:

• Age: F(2, 37) = 0.006, p = 0.99
• Gender: F(1, 38) = 0.13, p = 0.73
• Educational Status: F(6, 33) = 0.27, p = 0.94
• Occupational Status: F(3, 36) = 0.48, p = 0.69
• Residence: F(1, 38) = 0.15, p = 0.70
• Monthly Income: F(2, 37) = 2.01, p = 0.14
• Type of Family: F(1, 38) = 3.34, p = 0.07

These findings indicate that parents' demographic characteristics, including age, gender, educational status, occupational status, residence, monthly income, and type of family, do not significantly influence their overall knowledge of home management of epilepsy.

Table 1: Descriptive Statistics (Frequency and Percentage) for the Parents' Demographic Data

Table 2: Assessment and Mean Scores of Parents’ Knowledge About Home Management of Epilepsy

Table 3: Differences in Mean Scores and Assessment Regarding Domains and Overall Parents' Knowledge About Home Management of Epilepsy

Table 4: ANOVA Table for the Association Between the Overall Assessment of Parents’ Knowledge Regarding Home Management of Epilepsy and Their Demographic Data

DISCUSSION

This study's findings reveal that most participants were women aged 35-46 years, a demographic characteristic that aligns with existing literature. This demographic trend is supported by the work of Kumar et al. (2019), who found similar age distributions in their study. The predominance of female participants can be attributed to the traditional roles of mothers as primary caregivers, particularly in cultures where women are more actively involved in the day-to-day care of their children. This observation is consistent with the findings of Güven et al. (2020), who highlighted that mothers are often more engaged in health-related activities concerning their children.

The participants' educational background was notably low, with the majority having only an intermediate level of education. This could be a consequence of early marriage and the associated withdrawal from formal education, a common occurrence in many societies where girls are often married off at a young age, thereby limiting their educational attainment (Hagemann et al., 2016). The proportion of homemakers among the participants (57.5%) further underscores this point, as these women may have had limited opportunities to continue their education or pursue careers outside the home. This demographic factor likely influences their availability and engagement in health-related activities, such as attending hospital appointments and participating in health education programs (Etemadifar et al., 2021).

The study also highlighted that a significant majority of the participants resided in urban areas. This urban predominance could be due to higher population density in cities and better access to healthcare facilities, which are often more concentrated in urban settings. Urban residents generally have more opportunities to engage with healthcare services, receive health education, and participate in community health programs than their rural counterparts (Kumar et al., 2019). This urban-rural divide in access to healthcare resources may play a role in the observed differences in health knowledge and outcomes.

When it comes to parents' knowledge about epilepsy management, the study revealed a concerning gap in understanding, particularly regarding epilepsy treatment. The poor knowledge exhibited in this domain may be due to several factors, including a lack of formal education, insufficient communication between healthcare providers and parents, and possibly cultural beliefs or misconceptions about the illness. These findings resonate with the study by Rani and Thomas (2019), who also observed that inadequate knowledge of epilepsy treatment is prevalent among parents, often leading to suboptimal management of the condition at home.

On a more positive note, parents demonstrated moderate knowledge in the domains related to preventive measures during and after a seizure. This moderate level of knowledge might be attributed to the experiential learning that comes from managing recurrent seizures at home. As parents repeatedly witness and handle seizure episodes, they may become more adept at implementing the necessary preventive measures, even if their formal knowledge of epilepsy treatment remains limited (Rice et al., 2022). However, the study's findings suggest that this experiential learning is insufficient, as it does not fully equip parents with the comprehensive knowledge needed for effective epilepsy management.

Interestingly, the study found no statistically significant associations between parents' overall knowledge and their demographic characteristics, such as age, gender, educational level, occupational status, residence, monthly income, and type of family. This lack of association suggests that the gaps in knowledge about epilepsy management are widespread across different demographic groups. It implies that other factors, possibly related to the overall healthcare system, the availability and quality of health education, or cultural factors, may influence parents' knowledge levels. These findings align with those of Gürhopur and Dalgiç (2018), who also reported no significant relationship between demographic variables and knowledge levels in their study.

Conclusion

The study provides important insights into the knowledge levels of parents regarding the home management of children with epilepsy. It concludes that most participants were women aged 35-46 years, with intermediate education levels, predominantly homemakers, and residing in urban areas with insufficient income. The findings reveal significant gaps in knowledge, particularly concerning epilepsy treatment, where parents displayed poor understanding. Conversely, knowledge about preventive measures during and after a seizure was moderate. Notably, the study identified no significant association between parents' knowledge and their demographic characteristics, highlighting the need for targeted educational interventions that address these knowledge gaps across all demographic groups.

Recommendations

Based on the study's findings, several key recommendations can be made to improve parents' knowledge and ability to manage epilepsy at home effectively:

1. Enhanced Health Education Programs: Hospitals and outpatient specialty clinics should implement ongoing, structured health education programs specifically designed for parents of children with epilepsy. These programs should be comprehensive, covering all aspects of epilepsy management, including treatment, preventive measures during seizures, and post-seizure care. Since mothers are often the primary caregivers, particular emphasis should be placed on reaching and engaging them through these programs.
2. Culturally Tailored Educational Materials: To address the specific needs and cultural contexts of the target population, educational materials should be culturally sensitive and accessible. This includes using simple language, visual aids, and culturally relevant examples to ensure that the information is easily understood and retained by parents with varying levels of education.
3. Community-Based Interventions: In addition to hospital-based programs, community health workers should be trained to provide epilepsy management education, mainly targeting households with limited access to healthcare facilities. These community-based interventions could help bridge the knowledge gap for parents living in more remote or underserved areas.
4. Improved Communication Between Healthcare Providers and Parents: Healthcare providers should be encouraged to engage more actively with parents during clinical visits, offering clear, concise explanations about epilepsy and its management. Regular follow-ups and check-ins, either in person or through telehealth services, could ensure that parents adhere to treatment plans and feel supported in their caregiving roles.
5. Research and Evaluation: Further research should be conducted to explore the barriers that prevent parents from acquiring adequate knowledge about epilepsy management. Additionally, the effectiveness of the recommended educational interventions should be evaluated regularly to ensure they are meeting the needs of the target population and leading to improved health outcomes for children with epilepsy.

FUNDING

This research did not receive any grant from funding agencies in the public, commercial, or non-profit sectors.

AUTHOR’S CONTRIBUTIONS

Study the concept and write and review the final edition by all authors.

DISCLOSURE STATEMENT:

The authors report no conflict of interest

ACKNOWLEDGEMENTS

We want to express our deepest gratitude to all the parents who participated in this study. Your willingness to share your experiences and knowledge was invaluable to our research. We are incredibly thankful to the Middle Euphrates Center for Neurological Science/Al-Zahra Teaching Hospital staff for their support and cooperation during the data collection process.

We sincerely thank the Faculty of Nursing at the University of Kufa for their continuous guidance and encouragement throughout this research. We are particularly grateful to the ethical review board for their thorough evaluation and approval, ensuring our study was conducted with the highest ethical standards.

Special appreciation is extended to our colleagues and peers for their insightful feedback and constructive critiques, which greatly enhanced the quality of this work. Lastly, we would like to acknowledge the unwavering support of our families, whose patience and understanding made this research possible.

Thank you all for your contributions to this study.