Parent`s Awareness Regarding their Epileptic Children in Minia University Maternal and Children Hospital

Introduction

Epilepsy is a common chronic childhood neurologic condition with an annual prevalence of 0.5%-1.0%. Children with epilepsy are at increased  risk of mental, developmental, and physical comorbidities and premature death compared with children who do not suffer from this   disease(Sassonker-Joseph et  al.,2021).

Epilepsy is a worldwide problem that affects approximately 70 million people of all ages. Nearly 90% of home are living in low- and middle income countries (LMIC), where it remains a major public health problem, not only because of its health implications but also for its social, cultural, psychological and economic correlations (Trinka et al., 2019).

Epileptic children are at more risk of psychological and psychiatric impairments. They often experience daunting limitations and social stigma, fear of next seizure, medication adverse effects, and poor academic achievement; therefore, epilepsy impairs children’s physical and cognitive health and psychosocial compatibility as evidenced by emotional, behavioral, social, and academic difficulties (Braun., 2017).

Common causes of childhood seizures or epilepsy include fever (these are called febrile seizures), genetic causes, head injury, infections of the brain and its coverings, lack of oxygen to the brain, hydrocephalus (excess water in the brain cavities) and disorders of brain development (Jones  et al., 2018).

WHO, (2020) mentioned that manifestations of epilepsy vary and depend on where in the brain the disturbance first starts, and how far it spreads. Temporary symptoms occur, such as loss of awareness or consciousness, and disturbances of movement, sensation (including vision, hearing, and taste), mood, or other cognitive functions.

Once a diagnosis of epilepsy is confirmed, most patients are treated with antiepileptic drugs (AEDs). The choice of an AED depends on the patient’s seizure type, age, sex, childbearing potential, comorbidities and concomitant medications, and the drug’s adverse effect and interaction profiles. If the seizure type has not been established before starting AED treatment, a broad-spectrum AED (effective against the most common seizure types, such as valproate, lamotrigine, levetiracetam or topiramate) can be used (author consensus)(Boon et al., 2021). 

Assessing the level of knowledge and attitude towards epilepsy is crucial to reducing the burden of the disease, raising the parents' awareness, encouraging the parents to seek treatment early, reducing stigma, myths, and all the misbeliefs about epilepsy. This, consequently, will improve the quality of life, not only for those who have epilepsy but also for their families (Neyaz et al., 2017).

Community health nurse plays a corner stone in the process of managing children with epilepsy. Nursing management of epilepsy focuses on preventing injury during seizures; administrating appropriate medication and treatments to prevent or reduce seizures, and monitoring neurologic status closely. In addition, the nurse should provide education and support to the child and family to help them cope with the challenges of living with chronic epilepsy disorder (Riechmann et al., 2019).

Significance of the study: -

70 million peoples are living with epilepsy worldwide, with 80% of them residing in low- and middle-income countries (Sharma et al.,  2020). Among the pediatric age group, the prevalence of epilepsy is 18.5 (0.8–49.0) per thousand and major cause in children is perinatal injuries (Taksande et al.,  2020). Epilepsy affects 0.5%-1% of children, with incidence ranging from 41 to 187 per 100 000.2 The negative consequences of epilepsy including psychosocial comorbidity in children and increased mortality risk are well recognized ( Widjaja et al.,  2020).

Lifetime prevalence of childhood and adolescence epilepsy (children < 18 years) in Upper Egypt was 9.7/1000, with higher prevalence among children < 12 years (10.8/1000) than adolescents (7.2/1000). The age-specific prevalence was highest in early childhood (12.01/1000) and least at adolescence (7.2/1000). More than half of the patients (59.4%) had idiopathic epilepsy( Farghaly etal,.2018).

Most epileptic patients have their first epileptic seizure before the age of 20 years, in Egypt, the prevalence rate in Assiut Governorate in Upper Egypt was 12.9 per 1,000. revealed that the prevalence of epilepsy among Egyptian children in Al-Quseir city was 9/1000 children, with highest peak among neonates and during early infancy (0-2years), with annual incidence rate 82.7/100, 000 children and the prevalence of epilepsy was higher among males (10.5/1000) than female children (7.4/1000).(Alshahawy etal.,2018)

Research Questions:

1. What is the level of parent`s knowledge regarding epilepsy?
2. What is the level of parent`s attitudes towards children with epilepsy? 
3. What is the level of parent`s self-reported practices for children with epilepsy?
4. Is there a relation between the parent`s socio-demographic characteristics and their level of knowledge, attitude, self-reported practice?

SUBJECT and METHOD

Study Design:

   A descriptive cross-sectional study was used to achieve the aim of the present study and answer the research questions.

Study Setting:

The study wasconductedat neuro- psychiatric outpatient clinic at Minia University Maternal and Children Hospital, it provides a wide range of health care services for urban and rural populations from near and far districts in Minia  governorate such as diagnostic and therapeutic services and many cases are frequented by the clinic ,such as epilepsy ,cerebral palsy, hyperactivity and delayed speech .The clinic works one  day per week ( Thursday from 9Am to 2 Pm), the medical team in the clinic consists of an assistant professor of pediatrics, a lecture of pediatrics , assistant lecture of pediatrics and one nurse.

Study Population:

A convenience sampling technique was used. The participants were parents of epileptic children attending the neuro- psychiatric outpatient clinic with their care recipients, Data collection was conducted in three months from  November, December,(2021) to January(2022).

Data Collection Tools:

A structured interviewing questionnaire was conducted, it was designed in the light of parameters assessed in similar studies (Vodougnon et al., 2019)(Elmohalem et al., 2020), however it was modified to suit the situation in Egypt. The questionnaire was divided into four tools covering the following topics:

First tool: Socio-demographic data Questionnaire:

 Covered the data related to children as (age, gender, duration of the disease etc....)and data related to parent as (name, age, residence, education, occupation and family income etc…).

 Second tool: Assessment Questionnaire of parent`s knowledge about epilepsy :

      Knowledge was assessed via twenty two questions that covered the following items :(definition of disease, causes,  signs & symptoms, risk factors, treatment, and effect on learning abilities etc…).

       The questions addressed the respondent`s knowledge about epilepsy ,which is sometimes intertwined with certain beliefs. This revealed misconceptions or misunderstanding and gaps in knowledge that were present so the whole questions were open-end questions.(several answers were possible, so we listed it and did not give suggestions on answers; just ticked the answers given by the interviewee spontaneously)to facilitate data collection.

Scoring System:-

Each question was rated zero for a wrong answer and one point for the right answer . The knowledge score was calculated by summing the scores for all questions thus the overall score ranged from (0-24).The level of knowledge for each participant was classified as  poor (< 30% =1-13points), fair (30- 70%=14-18) and good(> 70% =19- 24) (Vodougnon et al., 2019).

Third tool: Assessment Scale of parent`s Attitude towards children with epilepsy:

Perceived attitudes and behavior towards children affected by epilepsy was assessed via twenty six statements that covered the following items: (Childhood seizure leads to financial problem for family, work and marriage etc….. ).

Scoring System:-

A three-point Likert scale of parent`s responses to twenty six statements. Scores for negative attitude statements ranged from two (for participants who agreed )to zero (for participants who disagreed).The opposite of this scoring system was used for positive attitude statements. The total score was calculated by summing the scores for all statements thus the overall score ranged from (0-52) .Levels of attitude were then classified as negative attitude(> 70% = >40points) ,neutral (30%-70=20-40% points),and positive attitude(<30%=<20 points). (Elmohalem et al., 2020).

Fourth tool: Assessment Questionnaire of Parent`s self-reported Practices towards children with epilepsy:               

Practices of parents were assessed via thirteen questions, supporting children during treatment .

Scoring System:                                                                                                         

Possible responses to each question were measured by give a score one for each correct answer and a score of zero for incorrect answer and I don`t know. The total score was then calculated by summation of the responses to all the 13 questions. The participants were classified into three categories to their total score as poor (< 30% =1- 4), fair (30%- 70% =5-9 ) and good (>70% =10- 13) (Vodougnon et al., 2019).

Content Validity:

The content validity for the tools was performed based on five experts review. The questionnaire was evaluated by one community health nursing experts, one pediatric nursing, two psychiatric and mental health nursing and one pediatric medicine experts for content coverage, the sequence items, clarification, relevance, applicability, wording, length, format, and overallappearance. Modifications were made based on expert`s comments and recommendations, including rephrasing some sentences, rearrangement of some sentences and addition of a few questions.

Reliability:

Internal consistency was measured to identify the extent to which the items measure the same concept and the extent to which the items are correlated with each other. With an 84% reliability rate using Cronbach`s alpha test. 

Pilot Study:

A pilot study was conducted before starting data collection; it was carried out on 10 %( 25) of the total sample. The results of the pilot study were helped in the necessary modifications of the tools in which omission of unneeded or repeated questions was done. Those parents of the pilot study were included in the study.

Ethical consideration:

A written initial approval was obtained from the research ethical committee of the Faculty of Nursing, Minia University. Oral informed consent was obtained from parents of children after explaining the nature and benefits of the study. Each assessment sheet was coded and parents name will not appear on the sheets for the purpose of privacy and confidentiality. The Parents was assured that they could withdraw at any time from the current study without any effect on their children treatment and care. The investigator was interview with parents of epileptic children and collect data from them. Measures were taken to protect parents of epileptic children’s ethical rights.  

Study procedure:

Permission to conduct the study was obtained from the Dean of Faculty of Nursing at Minia University. An official letter was obtained from the head of the pediatric department, Faculty of Medicine, Minia University for data collection after approval of ethical committee at Faculty of Nursing, Minia University. This letter was including a brief explanation of the objectives of the study and permission was requested from the director to carry out the study. An official permission was granted from the head of the pediatric department, Faculty of Medicine, Minia University.

After an extensive review of relevant national and international literature, tools of data collections were designed in the light of parameters assessed in similar studies and were modified by the researcher in2020.Before data collection, tools for data collection translated  from English to Arabic version language, study tools were revised by five experts : one experts in the field of community health nursing at Faculty of Nursing, one experts in the field of pediatric nursing, two experts in the field of psychiatric and mental health nursing and one experts in the field pediatric medicine Minia University, to test its content validity and feasibility ,the necessary modifications were done as rephrasing ,rearrangement of some sentences and addition of a few questions

A structured interview was conducted in examination room in the clinic ,the investigator met participants and they were interviewed at times that were convenient for them, while waiting  for examination, after explaining  the nature and intent of the study to the parents of children  with epilepsy and they have rights to withdraw at any time, the investigator filled out the tools by asking them about the items in the tools. In the knowledge tool :the questions were open-end so several answers were possible , so we listed them and did not give suggestions on answers; just ticked the answers given by the interviewee spontaneously to facilitate data collection.

The investigator visited neuro- psychiatric outpatient clinic at Minia University Maternal and Children Hospital one day per week (Thursday from 9Am to 2 Pm) to recruit the study sample. the average time taken for each was around 15-20minutes depending on the response of parents, and numbers of cases 20 per day, Data collection was conducted in three months from  November, December,(2021) to January(2022)., Brief health education about epilepsy disease was done by the researcher and was enhanced with brochure distribution to the parent of children with epilepsy.

Statistical Analysis:

All analyses were done using SPSS, version 22.Quantitative data were presented by mean standard deviation while qualitative data were presented by frequency distribution. Student t-test and ANOVA test were used to compare means. Pearson correlation was used to determine the association between two quantitative variables .Graphical presentation of the data was done using Microsoft Excel 2017. The probability of less than 0.05 was used as a cut off point for all significant tests and all statistical tests were 2 tailed

Results:

Table (1): Distribution of parents regarding their socio-demographic characteristics , neuro- psychiatric outpatient clinic (2021), n=250.

Table (1): shows that, 34.0 % of parent their age ranged from 26 to 30 year, while 88% of them were female ,In addition  84.0% are rural. Their educational level revealed that 6.8% had a higher education. Regarding occupation 88% of parents are housewife,76.0%of parent had insufficient income.                                                  

Table (2): Distribution of parents regarding their knowledge about  epilepsy,neuro- psychiatric outpatient clinic (2021) ,n=250.

Table (2): illustrates that more than half of the parent reported that epilepsy is a disorder caused by abnormal electrical discharges in the brain,62.4% reported that epilepsy affect , both males and females. Also 40.8% said epilepsy was related to family history, the majority of parent believed that epilepsy cannot be transmitted from one person to another.

Figure (1): Distribution of parents regarding to their total knowledge Score, neuro- psychiatric outpatient clinic (2021),n=250.

Clears that 59.2 % of parents have poor knowledge score, 36 % have satisfactory knowledge score but 4.8% of parents have good knowledge scores.

Figure (2): Distribution of parents regarding to their total attitudes  Score  , neuro- psychiatric outpatient clinic (2021) ,n=250.

Mentions that 6.8 % of parents have negative attitudes while 93.2% have positive attitudes.

Figure (3): Distribution of parents regarding to their total practices Score, neuro- psychiatric outpatient clinic (2021),n=250.

Explains that 72.8 % of parents have poor practices score, 26.4% have fair practices score but 0.8% of parents have good practices score

Table (3): Relation between total score of parent attitudes and their socio demographic characteristics, neuro- psychiatric outpatient clinic (2021) ,n=250.

Significant at (p-value <0.01)

Table (3): Highly statistical significant difference relation between attitudes score and educational level, age and residence p value 0.001, 0.001, and 0.01 respectively.

Table (4): Total Score of Parent Practices and their Socio demographic characteristics, neuro- psychiatric outpatient clinic (2021), n=250.

Table (4): No statistical significant difference relation between practices score and socio-demographic characteristics

Table (5): Total Knowledge score of Parent and their Socio demographic characteristics, neuro- psychiatric outpatient clinic (2021),n=250.

Table (5): Statistically significant difference relation between total knowledge score and educational level, p value 0.005 and no statistically significant difference relation between total knowledge score, regarding age and residence.

Table (6): Correlations between parent's Knowledge, Attitudes and Practices towards their epileptic children ,neuro- psychiatric outpatient clinic (2021), n=250.

Table (6): shows that there is statistically significant difference correlation between Parents' knowledge and attitudes p value=001and there is no statistically significant correlation between Parents' knowledge and practices and between Parents' attitudes and practices p value=0.9 and 0.4 respectively