A seizure is a transient occurrence of signs and/or symptoms resulting from abnormal excessive or synchronous neuronal activity in the brain. The International Classification of Epileptic Seizures divides epileptic seizures into 2 large categories: In focal (formerly known as partial) seizures, the first clinical and electroencephalographic (EEG) changes suggest initial activation of a system of neurons limited to part of 1 cerebral hemisphere.(1) Epilepsy is a disorder of the brain characterized by an enduring predisposition to generate seizures and by the neurobiological, cognitive, psychological, and social consequences of this condition and clinical diagnosis of epilepsy usually requires the occurrence of at least 1 unprovoked epileptic seizure with either a second such seizure or enough EEG and clinical information to convincingly demonstrate an enduring predisposition to develop recurrences. For epidemiologic and commonly for clinical purposes, epilepsy is considered to be present when 2 or more unprovoked seizures occur in a time frame of longer than 24 hr.(1)
Epilepsy is one of the most frequently diagnosed neurological disorders affecting children.(2, 3) With population based study between 0.3 and 0.6 percent of Canadian children under the age of 18 are affected by epilepsy (4), it is likely educators will work with this population at some point in their career. Epilepsy is consistently linked to academic underachievement and social difficulties.(5)
Epilepsy is the most common chronic neurological disease seen in Pediatrics Neurology Units in developing countries(6) and has prevalence of 5–10/1000 in developing countries.(7) In another study aimed to describe the patterns of neurologic morbidities among patients attending the pediatric neurology clinic of TASH in 2013 seizure disorders (both idiopathic and secondary) alone or as co-morbidity, were found in 45.6 % of all cases (104 of 228 cases) among which 28.8 % (30 of 104) were idiopathic and 71.2 % (74 of 104) were secondary to other disorders which shows that nearly half of the children at follow up in pediatric neurology clinic have seizure disorders. (8)
In a community-based study which was performed in a rural area of central Ethiopia shows one-hundred thirty-nine incident cases were identified, corresponding to an annual incidence of 64 in 100,000 inhabitants [95% confidence interval (CI)]. And the highest age-specific incidence occurred in children.(9) The prevalence of epilepsy in developing countries, particularly in Latin America and Africa, is thought to be considerably higher than that in developed countries, with rates ranging from 10 to 15 per 1000.(10, 11)
Epilepsy, like other chronic disorders such as sickle cell disease, diabetes mellitus and bronchial asthma has been found to negatively affect school attendance and academic performance.(12) While academic under-achievement and poor school attendance in children with other chronic conditions are due to recurrent morbidity, the effect of epilepsy is thought to be due to relatively reduced intelligence, psychosocial problem, anti-epileptic medication and the influence of seizure variables such as seizure type, age at onset, EEG findings and seizure control.(13) However, there is a controversy regarding the relative importance of these factors.(14, 15)
Children with epilepsy are prone to educational underachievement as a result of co-morbid learning and behavioral problems. Other factors that may contribute to poor school performance amongst epilepsy patients may include overprotective parental attitudes, a lack of academic motivation, and low self-esteem. The impact of epilepsy on school attendance may also contribute to the academic difficulties of children with epilepsy.
Although most studies addressing academic performance in school-aged children with epilepsy are focused on academic achievement and quality of life of children with epilepsy, there were only few on the impact of seizure on school attendance. However, the prospective study in Brazil which was conducted at the University of Campinas, in the pediatric epilepsy clinic, from January 2005 to August 2006 which enrolled only 50 children diagnosed with epilepsy addressed this topic. The study showed 88 % of patients in the study missed at least one day of school due to seizures. And almost half of the parents (46%) believed that if the child had a seizure at school he/she should leave school immediately.(16)
In Ethiopia, the official primary school entrance age is 7. According to Ethiopian national education the system is structured so that the primary school cycle lasts 6 years, lower secondary lasts 4 years, and upper secondary lasts 2 years. Despite this opportunity, there is a lack research that specifically focuses on the School attendance in children with epilepsy which has directly affecting the school achievements in this group. Any chronic illness in childhood carries risks to development physical, psychic and cognitive aspects of the child, increasing psychosocial morbidity.[16, 17] However, epilepsy, as a disease chronic disease seems to affect the child more than other diseases such as asthma or diabetes.[18], with repercussions on the behavior and in the learning of epileptic children and adolescents.[19]
Children with epilepsy constitute a vulnerable educational group at high risk to develop specific learning disorders and consequently impairments in academic achievement, in addition to psychosocial adjustment poor, which can result in dropping out of school.[20] The literature shows that in childhood epilepsy the academic difficulties are linked to organic factors directly related to the disease itself such as the underlying neurological disease and its physical and cognitive limitations, age the frequency of seizures, type of epileptic syndrome and etiology, degree of and the frequency of crises and the risk of accidents, in addition to the effects of side effects of drug and surgical therapies. However, variables that may be involved in the schooling process as low parents and teachers about the success of the child, possibility of rejection of the teachers and classmates and changes in the child's self-esteem are also important factors that can promote a lower school performance of the child with epilepsy [21] At the same time, some international research points to the fact that the variables of epilepsy can interfere in academic performance, in addition to be significantly related to the educational institution (school regular or special) that epileptic children attend.[22-26]
According to Fernandes (2005), different variables may be related to the appearance of these problems, such as the type of epilepsy and its severity, age of the onset of crisis, but also the vision and beliefs of the general population including parents, teachers, school friends, who believe that children epileptics present more behavioral problems even when have educational repertoire and intelligence similar to those of other children healthy. Some authors point out that cognitive and social presented by children with epilepsy are not only related to intellectual deficit, but also with the possibility of the presence of stigma. [27]
It is hoped that the findings from this study will aid in formulating a suitable educational program for these children and can help teachers understand how to the best support, accommodate, and prepare for these children in their classes. And the study also contributes to the existing literature by filling gaps seen in the paucity of research on a topic from developing word. This study will determine the impact of epilepsy on children school attendance and find out possible reasons of absenteeism from school. The result of the study will be used to show the magnitude of the impact of epilepsy on school attendance which is one of factor which determines the overall school performance. It will also be used literature data source for further study on the related topics.
Since the Ethiopian government has embarked on a transformational agendum of achieving an economic development of a middle income country and universal health care access to all of its citizens by the year 2035 and Federal Ministry of Health (FMoH) has developed a national strategic framework on the prevention and control of non-communicable diseases (NCDs) and their risk factors, significant achievements have been documented across potential health service coverage and health related millennium development goals (MDGs). In addition; in Ethiopia, evidence suggests a raising burden of NCDs like epilepsy. A number of separate small scale studies, and the situational analysis done by the FMoH in 2008 supported the above conclusion on the situation of NCDs and their risk factors in Ethiopia. Accordingly, in 2010 the Federal Ministry of Health has developed a national strategic framework on the prevention and control of NCDs and their risk factors. In spite of these; scientific researches on the impact of seizure on children’s school attendance and their contributing factors are lacking here in PNC of TASH.
Though affordable, feasible and cost-effective public health solutions for reducing the impact of NCDs like epilepsy are now available, in our country (as in TASH), there is still a lack of research on the impact of seizure on children’s school absenteeism and academic achievement.
In reality, it is expected that health facilities should provide children and their families a regular schedule on seizure management. Yet, not all of children with epilepsy had seizure management plans and in some cases the adequate description of the factors leading to school absenteeism is not available. In fact; the parents, school staff and classmates should be informed about the status of child’s seizure, so that they can socialize and care for him/her in times of attack. However, in our setup such group of people sometimes struggle with understanding the manifestation of the child’s seizures and what to do when a child experiences active seizure. The young people, parents, and teachers struggle to understand the role of epilepsy and seizures with respect to the student’s learning and behavioral problems.
Another concern is the scarce number of publications on the subject of child epilepsy and education, as well as discussions about the impact of the disease and its variables on development of these children. There were only few international studies but national study that focused directly on this issue is lacking. Though a number of parents expressed a need for more support with respect to understanding their child’s condition, the impact of parents understanding on school attendance and learning and is still not investigated. Hence, there is lack of research to facilitate evidence-based decision in PNC at TASH.
Epilepsy is one of the most frequently diagnosed neurological disorders affecting children. It is likely educators will work with this population at some point in their career. Epilepsy is consistently linked to academic underachievement and social difficulties. Children with epilepsy are prone to educational underachievement as a result of comorbid learning and behavioral problems. Other factors that may contribute to poor school performance amongst epilepsy patients other may include overprotective parental attitudes, a lack of academic motivation, and low self-esteem. Research is needed to identify how best to support the informational and emotional needs of parents and families affected by the factors influencing the condition. The impact of epilepsy on school attendance may also contribute to the academic difficulties of children with epilepsy and there is no study done in our setup making this study significant.
- Objectives
2.1. General Objective
- To assess the impact of seizure on school absenteeism and associated factors among childhood epilepsy in school age children and adolescents between the ages of 7 and 18 years who are attending follow up at the Pediatric neurology clinic in Tikur Anbessa Specialized Hospital (TASH).
2.2. Specific Objectives
- To describe the impact of seizure on school attendance in children with epilepsy
- To identify factors associated school attendance in children with epilepsy
- Literature Review
In one study at Brazil fifty patients were evaluated, 34 boys and 16 girls; age ranged from 6 to 18 years old). Eighty-eight percent of patients in the study missed at least 1 day of school due to seizures and the same study shows the reason given by parents for a school absence was seizure in 75%.(16)
Academic achievement can also be significantly impacted by many aspects of epilepsy including seizure activity, coexisting cognitive deficits, side effects of antiepileptic drugs, absenteeism, peer acceptance, and teacher understanding and expectations (17, 18)
The literature indicates that children with epilepsy have increased rates of school absenteeism.(19) But there were few studies on the factors associated with absenteeism and there are no data about the impact of seizure on school performance internationally.
It is unclear whether some conditions may predispose a child to particularly high rates of school absence. It is also unknown whether demographic factors associated with school absenteeism in general school populations (such as socioeconomic status, maternal education, and maternal disability days) correlate with school functioning among children with epilepsy.
An epidemiological investigation conducted at community-based level which was performed in a random sample of villages with 61,686 inhabitants in a rural area of central Ethiopia showed one-hundred thirty-nine incident cases were identified, corresponding to an annual incidence of 64 in 100,000 inhabitants [95% confidence interval (CI) 44-84] corresponding rate for males was 72 (CI 42-102); for females, it was 57 (CI 31-84). The highest age-specific incidence occurred in the youngest age groups (0-9 years); the next highest was in the group aged 10-19 years.(9)
A 2015 CDC study, based on 2009–2010 national data, found that 36% of students aged 6 to 17 years with epilepsy were more likely to have missed 11 or more days of school in the past year, compared with 18% of students with other health concerns. Students with epilepsy were also more likely to have difficulties in school (such as problems communicating), use special education services, and have activity limitations (such as less participation in sports or clubs) compared with students with other medical conditions, such as autism or intellectual disability.(20)
In study with objective to compare functional difficulties and school limitations of a national sample of US children with special health care needs (CSHCN) with and without epilepsy. Among CSHCN with comorbid conditions, 36% of children with epilepsy missed 11 or more days in the past 12 months compared to 18% of children without epilepsy (p< 0.001). Among, CSHCN without comorbid conditions, there was a similar pattern. A higher percentage of children with epilepsy, compared to children without epilepsy missed 11 or more days of school (21% vs. 15%) and 35% of children with epilepsy, compared to 25% of children without epilepsy, were reported to have a health condition that interfered with the child’s ability to participate in sports and clubs (p <0.01).(21)
In recent study done in Sierra Leone to assess the impacts of epilepsy on child education in Sierra Leone (SL), they carried out a cross-sectional descriptive study examining its effects on school attendance, participation in physical activities, and social acceptance among classmates. The data were collected at various epilepsy clinics and school in Freetown, SL. In which a total of 50 patients were interviewed and questionnaires administered to their caregivers and teachers, making a total of 150 respondents. Fifty-one percent of the children were absent from school for >5 days per month and the commonest reason being fear of occurrence of seizures. In same study regarding the caregivers about forty-eight percent were apprehensive about sending their children to school, with 83% of these caregivers stating fear of seizures and potential injuries. Only 8% of the caregivers did not prevent their children from taking part in any physical activity at school. Totally, 20% of the children ceased attending school permanently; daily occurrence of seizures (p<0.05), negative attitude of classmates (p<0.001), and having an illiterate caregiver (p<0.02) all showed a significant association with permanent cessation of schooling. The study demonstrates significant negative impacts of epilepsy on child education.(22)
In another prospective study conducted from January 2005 to December 2005 at the pediatric epilepsy clinic of University Hospital in which parents were interviewed about the impact of epilepsy in the life of the siblings of children with epilepsy of one hundred and twenty-seven children, siblings of 78 patients with epilepsy were evaluated. From, 127 siblings of children with epilepsy, 60 were girls and 67 were boys. Age ranged from 5 to 18 years old (mean=11.7 years). After the diagnosis of epilepsy, the siblings had only negative feelings toward the disease, mostly sadness and fear(23).
Regarding the effects of drug therapy in children with epilepsy some authors point out that antiepileptic drugs decrease excessive neuronal excitability to reduce or extinguish the occurrence of seizures, but effects of this process are psychomotor slowness, attention and concentration, and memory problems leading to learning and other impairments in academic functioning.(24)
In Brazil, the study by Aguiar et al. (2007) aimed to evaluate the impact of epileptic seizures in school absenteeism have shown that fifty children who participated in the study, 80% had already lost by least one day at school because of crisis; 46% of parents believed that the child should leave school immediately after a crisis has occurred; 60% of families allowed their children to miss school even if they did not have occurred on the respective day.(16)
Another important aspect concerns the scarce number of publications on the subject of child epilepsy and education, as well as discussions about the impact of the disease and its variables on development of these children. There were few international studies and national study that focused directly on this issue is lacking.(16, 25-28)
The high frequency of attacks and; therefore, the greater severity of epilepsy have also been seen as a factor with a significant relationship academic performance of children with epilepsy. The negative impact of seizure frequency on intellectual performance is great resulting in low academic performance and difficulties in learning and adapting to the school environment. According with the authors, the condition may worsen when epilepsy remains active for periods of time.(29)
Regarding the organic factors related to epilepsy, some authors indicate that educational failure is related to the early onset of the disease, the frequency, and severity of epilepsy which can be mediated by a decrease cognitive.(5, 28, 30)
For Kenee et al. (2005), the early onset of epilepsy is associated with cognitive problems. The results of some studies have shown that epilepsy in the first years of life is a significant risk factor for development of problems related to intellectual functioning.(28, 31, 32) as compared to those Longitudinal studies that show adults with epilepsy tends to have a lower educational level, higher dropout rates school and need to attend special schools or special education, resulting in higher rates of unemployment or underemployment and increased incidence of psychiatric disorders.(33-35)
Sulzbacher et al. (1999) showed that children on a monotherapy for a long time have significant cognitive impairments in relation to reading, learning, and writing. The results also showed that the drug therapy had long-term effects, because even after three years without the use of medication the children continued to present cognitive deficits.(36)
In addition, the diagnosis of epilepsy, its undesirable effects and its psychosocial connotations significantly affect personal life of the child and family.(23, 37, 38) These authors also point out that these variables may lead to over protection behavior by parents and other family members, leading to lower academic achievement, commitment to activities daily life and independence, as well as difficulties in relating to friends within and outside the school environment, regardless of cognitive level.
Additionally, it is observed that such characteristics (early onset, severity, frequency of epilepsy, drug therapy and negative psychosocial connotation) may make epileptic children attending special schools or using special education services, although studies addressing this issue are scarce.(39, 40)
The prevalence of the use of special education services by children with epilepsy and frequency of epilepsy 30 times higher in patients with children attending special schools or special classes within schools than regular school students.(27)
Berg et al. (2005) verified through a longitudinal study, which followed 613 children over five years after being that 525 (85%) children were in school and that of these 315 (60%) had already used some service related to special education as classes regular schools or resource rooms or attended special.(26)
In a recent study aimed to assess and understand the social and the demographic determinants of knowledge, attitude, and practice of teachers towards people with epilepsy in Addis Ababa, Ethiopia which involved 820 teachers showed ninety percent of the teachers knew epilepsy as a disease and the most common source of information was acquaintances with PWE (51.3 %) and among those who had acquaintances with PWE, they had come across PWE in person (67.2 %), and had a student with epilepsy in class (28.6 %). The same researchers showed although 89.2 % of the teachers would allow PWE into their class, the majority (76.7 %) of them preferred that the epilepsy be cured or controlled before attendance, accounting for 21.6 and 19.1 % of the responses respectively. PWE were perceived insane more than infectious explaining 9.4 and 0.2 % of the responses respectively.(41)
Of the 231 children aged between 5 and <15 years, school attendance habits had been recorded on 162(70%) and 92 of these were definitely attending school and 70 were definitely not. A significantly higher proportion of girls were at school compared with boys [47/71 (66%) and 45/91 (49%) respectively; chi2 = 17.8 with Yates correction]. In this same study the proportion of all children attending school were significantly lower in older children (percentage attendance in age groups 5 to <10 to and 10 to <15 yrs being 60% and 52% respectively).(42)
In a community-based study in rural area of Ethiopia showed among the 139 persons with epilepsy identified, 49% were below the age of 10 years and 79% below 20 years and the ratio of males to females was 1.2 to 1.0.(9)