Effect of Maternal Practices Educational Program on Quality of Life for Their Epileptic Children

Background: The epilepsy plays major problems around the world due to poor knowledge of the caregivers. There is a need for creation of awareness about the epilepsy among the caregivers. Aim: The present study aims to; study effect of maternal practices educational program on quality of life for their epileptic children. Subjects and Methods: A quasi-experimental research design was used to conduct the study at El-Arab health unit in Port Said city. A convenient sample of 80 mothers and their epileptic children was included in the study. Children's age ranged from 6-12 years. Tools Three tools were used for collecting data consisted of; (1) A structured interviewing sheet include personal characteristics of epileptic children and their mothers, and medical history, (2) Mothers practices questionnaire sheet, (3) Quality of life (QOL) sheet. Results : the current study revealed that the most of the studied mothers (80%) had adequate practice after implementation of the intervention, there was statistically significant difference between before and after implementation of the program with p-value whereas (P=0.000), and (63.7%) of the studied epileptic children had good quality of life after intervention. Conclusion : the educational intervention had a positive effect on the epileptic children’s mothers’ practices which improve their children quality of life. Recommendations : provide supportive educational interventions to support epileptic child and his/her family in all quality life domains and increase awareness of epileptic children's mothers and care givers about care practices regarding epilepsy and existing resources in Egypt.


INTRODUCTION
Epilepsy is the most common neurological system disorder that affects people of all ages.According to estimates, epilepsy is one of the most common neurological disorders and a major contributor to developmental impairment.The most recent data on global burden of disease, 8.96 out of 1000 people worldwide are under the age of 20 years (Olusanya, Wright, Nair, Boo, Halpern, Kuper, et al., 2020).In Egypt, approximately 50% of cases of epilepsy begin in childhood or adolescence.The prevalence rate was 12.9 per 1000 and in the children is 4-6 per 1000 child (El-Mouty & Salem, 2019).
In 2014, the definitions task force of the international league against epilepsy (ILAE) was developed the most recent definition of epilepsy as brain disorder diagnosed by minimum two unprovoked (or reflex) seizures that happen more than 24 hours, one unprovoked (or reflex) seizure with a likelihood of additional seizures equal to the overall recurrent risk (minimum 60%) after two unprovoked seizures, happening over the following 10 years, or a diagnosis of an epileptic syndrome (Patel and Moshé, 2020).
According to Akbas and Kartal (2022) Epilepsy is a brain disease characterized by abnormal brain activity causing seizures or unusual behavior, sensations and sometimes loss of awareness.It carries neurological, cognitive, psychological and social consequences and accounts for a significant proportion of the world's burden of disease.
Caregivers of the epileptic children with chronic conditions like epilepsy frequently experience high levels of stress, which can have negative effects on parent-child relationships, increase the risk of mothers' depression, and cause issues with family functioning.Mothers in particular frequently act as their children's primary caregivers, which puts them at a higher risk of experiencing psychological problems like depression.
Therefore, it's crucial to take into account how pediatric epilepsy affects not just the child, but also other family members and siblings (Subki, Mukhtar, Al-Harbi, Alotaibi, Mosaad, Alsallum, and Jan, 2018).Parents, as supervisors, are at the core of disease management as much as children, for example, at the time of diagnosis (family observations in determining the age of onset of seizure and the type of seizure), in followups (decision-making about medical/surgical treatment), and in seizure management that the child can experience at any time (Ayar, Ünalp, Bektaş, Yılmaz, Karaoğlu, and Yalçıntuğ, 2022).
As maintained by El Nabawy and Abdelgawad, (2022), common misunderstandings in epilepsy include overprotection of children with epilepsy from their family, which prevents them from participating in sports or social activities or attending school, resulting in high levels of fear and lack of confidence.Furthermore, Hamaad and Alseraty (2019) asserted that, low levels of self-efficacy in managing seizure are associated with negative attitudes toward epilepsy as an illness, fears about seizures and greater severe episodes, less family support and management, and more depressive symptoms.
The primary goal of epilepsy management in the past was to prevent seizures with minimum focus on the receiving quality of life (Pachange, Dixit, Arjun & Goel, 2021).It is very important to evaluate the well-being and quality of life of children with epilepsy.
According to (Conde-Guzón, et al., 2020) several clinical and psychological factors influence the quality of life of epileptic children, including the length of epilepsy, type, frequency, and intensity of seizures, the number and side effects of anti-seizure drugs, the existence of comorbidities, parental anxiety, and family socioeconomic level.
Epilepsy management necessitates a grasp of how epilepsy affects all parts of a child's life.Traditionally, epilepsy care has focused on seizure control, with little attention made to QOL (Pachange, Dixit, Arjun & Goel, 2021).Education is the cornerstone to the management of children with any form of seizure disorder.Children and families will almost certainly have been extremely frightened (Nagarajan, 2018).The use of learning models for supporting mothers to control seizure, has the positively impact on them to function more better.Additionally, the educational interventions help caregivers of the epileptic children to practice and managing stressful situations (Hamaad & Alseraty, 2019).In this context, Pediatric epilepsy nursing constitutes a key component of this service, and includes care planning, facilitating appropriate participation, risk assessment, school and respite care liaison, rescue medication training and telephone advice (Mammas & Spandidos, 2020).

Significance of the study:
Parents especially mothers, play a significant role in management of epilepsy especially the management of epileptic fits in terms of home management.So that, raising awareness about epilepsy and its etiology will increase the knowledge and practices toward epileptic children.Therefore, this study aimed to improve the epileptic children's mothers' practice which will enhance the quality of life for those children.

AIM OF STUDY:
The study aim was to study effect of maternal practices educational program on quality of life for their epileptic children.

A. Technical design:
This design includes a description of the research design, setting, subjects, and tools of data collection.

Study design:
A Quasi-experimental research design (pre and post-test) was utilized to meet the aim of this study.

Study setting:
The current study was conducted at El-Arab health unit in Port Said.

Study subjects:
A convenient sample of 80 mothers and their epileptic children was included in the study.Children's age ranged from 6-12 years.

Tools for data collection:
Three data collection instruments were used:

1-A structured interviewing sheet:
The scale was developed by the researcher in Arabic language.This tool includes  Part III: Child's medical history: It includes data related to epileptic children medical history as: onset of epilepsy, duration, frequency of seizures, specific events or circumstances, receiving treatment, the effect of taking medication, other chronic illnesses, hospitalization due to illness, and family history of the disease.

2-Mothers' practices questionnaire sheet:
This tool was adapted by the researcher from Hamaad & Alseraty (2019) to assess mother's practices in caring for their epileptic children before, during and after the attack and mothers' practices in the management of side effects of antiepileptic drugs.
Scoring: every mother was answer on a 3-point Likert scale ranging from 1 to 3; a score of 1= never, 2= sometimes, 3=always.The score for each domain was obtained by calculating the average of the items (except items 6 and 16) completed by the patient and then applying a linear transformation to obtain an average score ranging from 0 to 100.

B-Operational design:
The study field of work was carried out through the following phases:

Preparation phase:
It included reviewing of relevant literature, different studies and theoretical knowledge of various aspects of the problems using books, research articles, internet, periodicals and magazines.

Validity
Tools were tested by seven experts from the faculty of nursing in field of pediatric nursing to test its content validity and modifications according to the experts' comments and recommendations were done.

Reliability
The reliability of the developed tools was estimated it show a positive significance with (r=0.84%).

Pilot study:
After the tools have been developed, they were tested through a pilot study, which was carried out on.The pilot study was carried out on 10% of the total sample of the epileptic children's mothers.It was done on 8 mothers attended to El-Arab health unit in Port-Said city and these were excluded from the total sample.
Field work: field study was conducted for ten months from the beginning of February (2020) to the end of November ( 2020).The study was carried out through the following phases: Phase I (Assessment Phase): in this stage the researcher obtained official permissions to carry out the study, the researcher visited the study settings and arranged with the nursing director for the actual implementation of the study.Then, the process of recruitment of epileptic children's and their mothers according to the number of visits to treatment centers.The researcher clarified the sheets of the three tools to each mother and asked them to complete it.Each tool was filled in about 15 minutes to 30 minutes.

Phase II (the educational program development): the educational program was
designed based on the assessment data collected in phase I.The educational program was aimed to enhance knowledge and practice of epileptic children's mothers toward successful epileptic care practices.The educational program was designed to cover information contribute in successful management of epileptic illness including: introduction to epilepsy, general brief anatomy and physiology of neurovascular system, types of epilepsy fits, different types of epilepsy treatments, effects of epileptic fits on children's quality of life, and how to manage seizures.Handout includes theoretical content and procedures of fits caring was prepared to facilitate and remember knowledge about care of children.

Phase III (The educational program Implementation):
at the beginning, the researcher met with each mother individually, explained the aim and procedures of the study, and invited them to participate.The mothers who gave their informed consent to participate should also agree to provide their telephone numbers through which they could be contacted for follow-up.A copy of handout was given to each mother to facilitate remembering the knowledge and practices during explanation of the theoretical part of the program.
Phase IV (Evaluation phase): the program outcome was evaluated by using the second and third tools after program implementation.The researcher contacted mothers through telephone numbers and WhatsApp application.

C-Administrative design:
Official letters were directed from the Dean of the faculty of Nursing to manager of El-Arab health unit in Port Said requesting their cooperation and permission to conduct the study, after explaining the aim of the study.

Ethical considerations:
The research ethics committee at the Faculty of Nursing, Port Said University, approved the study protocol.All research ethics principles were complied with according to Helsinki Declaration.Oral consent was obtained from mothers after explaining the aim of the study and its procedures to them to help them assured that the information obtained were confidential and used only for the purpose of the study and maintain their privacy.
Mothers were informed that they were allowed to choose to participate or not in the study and they have the right to withdraw from the study at any time with no consequences.
The study maneuvers could not have any actual or potential harm to participants.

D. Statistical design:
After completion of data collection, data were organized, tabulated and computerized in Microsoft Excel 2019, and statically analyzed.The statistical package for social science (SPSS) version 28 was used to analyze the data on a PC.Data were presented using descriptive statistics in the form of frequencies and percentages for qualitative variables, means and standard deviations for quantitative variables.Cronbach alpha coefficient was calculated to assess the reliability of the satisfaction scale through its internal consistency.Qualitative categorical variables were compared using the chisquare and p-value test.

RESULTS:
Table (1): shows that, the most of the studied epileptic children's mothers (82.5%) their age group were from 26 to 36 with mean 30.6 ±4.7 years.While less than three quarters of them (71.3%) of them were married and less than three quarters (73.8%) of them were living in urban areas.Moreover, more than a half of them (52.5%) had secondary school.While more than three quarters (75.5%) were working and less than two thirds (65%) of them their income was not enough.In the other way, more than three quarters of them (76.3%) were had less than three children, and all of them (100%) had not epilepsy training and had not care experience.

Table (2):
shows that, more than a half of studied epileptic children (56.3%) were males and a half of them (50%) their age group were from 8 to 10 with mean 9.0 ±1.8 years, less than two thirds (62.5%) of them had one brother and less than three quarters (73.8%) of them ranked second among their brothers.In the other way, all of the studied children (100%) went to nursery school, the majority of them (82.5%)hadn't nursery problems due to his illness, and all of them (100%) didn't leave the nursery school because of their illness, as well as the table indicates that, near to one quarter (26.3%) of the total children were in the 4 th grade academic year and less than three quarters (73.8%) of them their academic level is moderate level and all of them (100%) hadn't problems at school due to their illness.

Table (3):
clears that, more than a half of the studied children (51.2%) were suffered from the epilepsy from 2 -3 years, and less than three quarters (71.3%) of them had seizures less than 3 times a month and more than a half of them (52.5%)mentioned the duration of seizure one minute.As well as, all of the studied children (100%) reported that seizures begin due to specific events or circumstances and they experience the same sensations before starting each shift.More than a half (53.8%) of them started receiving treatment from more than 24 months, and all of them their condition improved by medication.While all of studied epileptic children (100%) didn't suffer from any other chronic illnesses and didn't take medication for these diseases, and the most of them (82.5%) didn't hospitalize due to illness.Whereas, all of them (100%) their brothers haven't been exposed to this disease and didn't have another family history of the disease.

Figure (1):
illustrates that, less than three quarters (73.8%) of mothers had inadequate practice before implementation of the intervention, while improved to the most of them (80%) had adequate practice after implementation of the intervention.

DISCUSSION:
Accurate knowledge about the epilepsy impacts on children and their families, especially mothers, and the development of skills are essential elements for assisting them in becoming stronger partners in children-centered care.The challenges that epilepsy presents to a child and family include challenging treatment regimens and psychosocial comorbidities that affect day-to-day functioning, inflict a heavy financial and social load on families, and are associated with low quality of life (Nashaat et al., 2022).So that the present study aimed to study effect of maternal practices educational program on quality of life for their epileptic children.
As regard to socio-demographic characteristics of the studied epileptic children's mothers, the current results showed that the most of the studied mothers their age group were from 26 to 36, and about three quarters of them were married and living in urban areas.While, more of than three quarters were working and nearly two thirds of them were their income not enough.This finding might be due to the study conducted in port said governorate which considered as urban area, Likewise, most of the women in the city of Port Said are workers, whether in the public or private sectors, to face financial pressures.Moreover, these mothers' characteristics may reflect positively on their knowledge and practice about care for their children.These findings in line with the study conducted by Nashaat et al. (2022) who reported that the highest age in the studied mothers were less than forty years and insufficient income.Also, Shahin and Hussien (2021) found that most of the studied mothers were with insufficient income and low level of education.
Regarding socio-demographic characteristics of the studied epileptic children, the present results revealed that more than a half of the studied children were males and their age group were from 8 to 10 years old, and nearly three quarters of them were first in birth arrangement.Also, all of them were entered to custody, and the most of them didn't have nursery problems or academic problems.This finding in agreement with (Nashaat et al., 2022) who observed epilepsy occur more in boys than girls and their age group under 10 years old.Also, the results by Saleh et al. (2021) found that two thirds of the children were males.While the current result was incongruent with Badawy et al. (2021) who reported that the prevalence of epilepsy among studied children were higher in females than males.Also, EL Nabawy and Abdelgawad, (2022); Shahin and Hussien, (2021); AbdAllah, Sharafeddin, and Ghonemi, (2019) were reported that the highest percent of the studied children were girls, there order in birth was the second.
The current study showed that all of the studied children didn't have academic problems due to their illness and didn't need to receive special health services from their school.This finding may due to awareness of Port Said city society by epilepsy illness which reflect on acceptable educational level of epileptic children.This result in agreement with Horaib, et al. (2021) who found that three quarters of the studied epileptic children went to school regularly, the majority of them had no previous academic failure.
While disagreed with Pachange et al. (2021) and (Subki et al., 2018) who found that the academic level of the children was affected negatively by their illness.
Concerning the medical history of the studied epileptic children, the present findings revealed that more than a half of the studied children were suffered from the epilepsy from 2 to 3 years, and more than nearly three quarters of them have seizures less than 3 times a month.As well as, all of the studied children reported that seizures begin due to specific events or circumstances and they experience the same sensations before starting each shift.The current results supported by Shahin and Hussien (2021) who illustrated that two thirds of studied epileptic children were mentioned that the seizures preceded by precipitating factors.AbdAllah, Sharafeddin, and Ghonemi, ( 2019) also reported that a half of the studied children had one or two attacks per month.While the present findings not match with the results conducted by El Nabawy and Abdelgawad (2022) who discovered that more than a half of the studied students were with the duration of epilepsy was less than 4 years; the seizures mostly occurred 3 to 5 times per month, lasted for 3 to 5 minutes.Also AbdAllah, Sharafeddin, and Ghonemi, (2019) found that the mean disease duration was 6.62 years.
Regard to the maternal practices in dealing with seizures, the current results illustrated that there was a marked improvement in maternal practices in post implementation of intervention.As evidence, about three quarters of mothers had inadequate practice pre implementation of the intervention which improved to the most of them had adequate practice post implementation of the intervention.This result reflects the importance of providing educational intervention to epileptic children mothers and caregivers to improve their knowledge, attitude, practice which reflect on mother's practice.This finding was in line with Shahin and Hussien (2021) who observed significant improvements in practice as well as the self-efficacy scores of epileptic children mothers following the implementation of the educational intervention.
Moreover, it is consistent with El Nabawy and Abdelgawad (2022) who proved that there were significant improvements in caregivers' reported practice after the implementation of the educational training program.Similarly, Wasilewski, et al. (2020) who showed that the effectiveness of caregivers' training intervention in improving their practices in caring for their children.
Concerning the quality-of-life domains score, the present results clarifies that there were significant improvements in all domains and total score among the studied epileptic children QOL post the implementation of the intervention compared with the pre intervention scores.This reflects the positive effect of the educational intervention and improvement of mothers practice on their children mental, physical and social ways of coping with illness.These findings in agreement with Hamed & Elseraty (2019) who reported that the majority of the studied mothers before an educational intervention believe that; their children cannot live with others can't do physical activities, has low intellectual abilities and believes that epilepsy is an obstacle of their children to live a good life, and these beliefs were changed after implantation of intervention.
Also, this finding is in agreement with EL Nabawy and Abdelgawad (2022) who stated that most of the epileptic children parents reported that epilepsy affected the child's daily activities and considered epilepsy a barrier to the child exercising.Also, Badawy, about epilepsy management skills showed improvement in physical, psychological and social wellbeing of epileptic children.Whereas, Shahin and Hussien (2021) indicated that the level of education of caregivers was identified as a significant independent positive predicator of the self-efficacy score and the practice improvement.Similarly, Badawy, Abusaad, and Hashem (2018) stated that the highest percent of the studied children had poor level of total quality of life before the intervention, which improved after 3 and 6 months after program implementation.

CONCLUSION:
Based on the findings of the present study, it can be concluded that: Maternal practices educational program had a positive effect on mothers' practices for their epileptic children with high statically significant differences between quality-oflife score in before and after intervention.

RECOMMENDATIONS:
Based on the results of the present study, the following recommendations were suggested: Provide supportive educational interventions to support epileptic children and their family in all quality-of-life domains and disease management process, increase awareness of epileptic children's mothers and care givers about care practices regarding epilepsy and existing resources in Egypt, and develop patient education sessions through mass media to reduce exposure to seizure triggers.

LIMITATION OF THE STUDY:
The study was affected by the Covid-19 period, as this led to a decrease in the number of visits to treatment centers, which resulted in reducing the number of the sample to 80 children instead of 100.


Part I: Personal characteristics of the mothers: It includes data related to epileptic children's mothers as: age, marital status, residence, level of education, occupation, income, number of children, did you have Epilepsy Training?And do you have care experience? Part II: Personal characteristics of children: It includes data related to epileptic children as: age, gender, number of siblings, birth order, academic year, academic level, school problems due to illness and the special services received from the school.

3-
Quality of life (QOL) sheet: This tool adapted by the researcher from Sidhu et al. (2019) and was used to evaluate the QOL of the children.The QOL is a parental, multifaceted epilepsy-specific scale for evaluating the QOL of children aged 4-18 years.It contains 60 items covering five domains of life function: Physical activities (1:12), well-being (13:31), social activities (32:40), child's behavior (41:58), general health (59,60).Scoring:The scoring was based on a scale of 0 = worst outcome to 5 = best outcome.Several items have reverse anchors and therefore when it coded the items were need to reverse the scores of those items.The reversed items were: 1-7, 9,16-27, & 29-34   and 38.

Figure ( 2
Figure (2):illustrates that, less than two thirds (62.5%) of the studied epileptic children had poor quality of life before implementation of the intervention, while Figure (1).Percentage distribution of total mothers' practice questionnaireScore.