Specifics of Children With Epilepsy in School Environment
Dana
Brabcov¨¢, Jiř¨ª Kohout
Dana
Brabcov¨¢, Department of Psychology, Faculty of
Education, University of West Bohemia, Plzen, Czech Republic
Jiř¨ª
Kohout, Department of Physics, Faculty of Education, University
of West Bohemia, Plzen, Czech Republic
Correspondence to: Dana Brabcov¨¢ Department of Psychology, Faculty of
Education, University of West Bohemia, Plzen, Czech Republic
Email: dannab@seznam.cz
Telephone: +420607629427
Received: April 8,
2015
Revised: April 26, 2015
Accepted: May 1, 2015
Published online: May 13, 2015
ABSTRACT
Our
editorial focuses on specifics of children with epilepsy in school environment.
Epilepsy and its common co-morbidities (learning disabilities, intellectual
disability etc.) are introduced as a highly-risk factor for school-life and
academic achievement of the affected children. Attention is devoted to policy
relevance of this topic and to important documents addressing it in this
context. The state-of-art of three important aspects of the topic (the academic
achievement and academic self-concept of children with epilepsy, the knowledge
of, familiarity with and attitudes towards epilepsy among teachers and the role
of classmates and parents of children with epilepsy) is thoroughly discussed in
this editorial. Finally, a complex approach to this topic based on conceptual
and structural modelling is promoted and any recommendations for a further
research in this field are briefly outlined.
© 2015 ACT. All
rights reserved.
Key words: Epilepsy; Children; Quality-Of-Life; Academic
Achievement; Structural Modelling
Brabcov¨¢ D, Kohout
J. Specifics of Children With Epilepsy in School
Environment. International Journal of Neurology Research 2015; 1(2): 79-82 Available from: URL:
http://www.ghrnet.org/index.php/ijnr/article/view/1157
INTRODUCTION
Epilepsy is one
of the world´s most common chronic neurological diseases. In Europe, there are approximately 6
million people having epilepsy and around 100,000 children and adolescents are
newly diagnosed every year[1]. Epilepsy is accompanied by
significant stigmatization and according to the famous Indian neurologist
Rajendra Kale "The History of Epilepsy can be summarized as 4,000 years of
Ignorance, Superstition and Stigma, followed by 100 years of Knowledge,
Superstition and Stigma"[2]. Despite some improvement in recent
decades, about 50 % of people with epilepsy still feel stigmatized[3]
and in many cases the stigma associated with epilepsy is harder to live with
than the condition itself[4].
Moreover,
patients with epilepsy have a 4-fold risk of co-morbidities that further reduce
their quality of life[5]. Many of these co-morbidities are
especially important in case of children and adolescents with epilepsy (CWE)
and play an important role in their academic achievement and school life. A
high prevalence of learning disabilities (LD) such as dyslexia (13-32%),
dysgraphia (35-56%) or dyscalculia (20-38%) represents one of these
co-morbidities. [6] Also the prevalence of attention deficit hyperactivity
disorder (ADHD) in children with epilepsy is many times higher than in the
total population, reaching a value of between 14 %[7] and 38%[8]
depending on the diagnostic criterion used. Epilepsy is also commonly
associated with global cognitive impairment since the reported rates of
intellectual disability (i.e. IQ score < 70) in CWE range from 21 % to 40%[9].
Due to these
facts it is not surprising that CWE are one of the high-risk groups in school
environment. Our recent study suggests that teachers of CWE may have serious
problems to assess correctly their abilities[10]. Certain
antiepileptic drugs may have adverse side effects, such as decreasing the
ability of the affected children to concentrate[11]. These effects
may be evaluated incorrectly by those school teachers who lack knowledge of
epilepsy. This can in turn lead to further stigmatisation.
Based on these
reasons, the school-related aspects of epilepsy have slowly become a topic of
high interest also for appropriate policymakers. A recent policy paper
identifies integration of school and community organizations with epilepsy care
delivery as one of four priorities in pediatric epilepsy research[12].
The Pan-American Health Organization (the regional office of the World Health
Organization) outlines education as one of the strategic areas of their
Strategy and Plan of Action on Epilepsy[13]. Great attention to
epilepsy education within the school system was devoted also in the European
White Paper on Epilepsy published in 2001[14]. There is a broad
consensus that a research related to school life of CWE should be focused also
on deepening of fundamental understanding of this issue and not only on
realization of trial-and-error educational interventions not having an
appropriate theoretical background. School-related aspects of epilepsy are thus
becoming a strong topic also for those neurologists, psychologists and other
professionals who are involved mainly in basic research.
Academic
achievement and academic self-concept of children with epilepsy
Education and academic achievement of CWE are very complex
multidisciplinary topics which have been discussed in many studies and policy
papers. Complex interplay between learning ability and epilepsy may result in a
greater risk of CWE being denied equal opportunities for learning and
development of their full potential[15]. It is well known that
epilepsy has a negative influence on academic achievement and CWE exhibit on
average lower scores in standardized tests in writing, reading and mathematics
than their peers[16]. However, it is still unclear whether this
could be explained by a greater number of CWE with an associated intellectual
disability and/or LD, or whether CWE achieve the same low scores in the area of
academic achievement even if they have normal cognitive functions and no LD.
Some studies show that significant differences remain even when effects of
cognitive function and LD are taken into consideration[17]. However,
others reported comparable academic achievement in the areas of reading,
mathematics and grammar between CWE without LD or intellectual disabilities and
their peers[18].
Besides
objective academic achievement measured using standardized tests, attention
should be devoted also to academic self-concept of CWE which shows how children
feel at school and if they have adequate confidence in their abilities[19].
These two aspects of academic achievement are related but distinct. Children
who achieved very good results in their ability to fulfil societal norms but
their academic self-concept was very low have been reported[20]. Our
recent paper shows that the academic self-concept of CWE is on average
significantly lower than in their peers without seizures and is closely related
to their quality of life[10]. Complex analysis shows that lower
self-concept of CWE is due to high fraction of CWE having LD and/or
intellectual disability. On the other hand, CWE without these co-morbidities
seem to exhibit academic self-concept comparable with their peers.
Knowledge
of, familiarity with and attitudes towards epilepsy among teachers
In recent years, studies on the knowledge of epilepsy among teachers,
on their familiarity with and on their attitudes towards epilepsy have been
conducted in many countries. Lack of basic knowledge of epilepsy and existence
of serious prejudices against people with this disease were reported especially
in developing countries. For example, 23% of teachers in Zimbabwe believed that
epilepsy was an infectious disease[21], 20% of teachers in Zambia
believed that epilepsy was caused by evil spirits[22] and 90% of
teachers in Sudan thought that CWE should not be allowed to play football[23].
However, even in highly developed countries such as the U.S. or U.K. teachers
do not appear to be well informed about epilepsy and its possible
school-related consequences[24 -25]. Teachers have often problems to
correctly assess abilities of CWE and have a tendency to underestimate them.
This tendency may be very dangerous because it may influence the teachers
enough that their reactions ultimately fulfil their initial false beliefs (the
so-called Pygmalion effect well known from psychology[26]). This
could lead to strengthening of teachers¡¯ prejudices against children with
epilepsy and to the emergence of stigma which has very negative influence on
quality of life of CWE[27].
Considerable
attention has been paid to determination of factors influencing knowledge of
and attitudes towards epilepsy among teachers. It was reported that more
experienced teachers[28] and/or the teachers who received
pre-service or in-service epilepsy training[29] have more favorable
attitudes and greater epilepsy-related knowledge. Our recent study shows that
teachers having a personal experience with epilepsy exhibit a significantly
higher level of knowledge and more positive attitudes towards people with
epilepsy compared with teachers not having this experience[30].
Furthermore, we found that subspecialization of the teachers does not have a
major effect on these variables[30].
Role played by classmates and parents of
children with epilepsy
Children¡¯s relationships with their peers play an important role in
their long-term psychosocial functioning. Many CWE have a very uneasy position
in the class due to the nature of their seizures, relatively frequent
epilepsy-related absences[31] (according to Ref. 31 school
attendance is significantly affected by epilepsy) and lack of knowledge and
existence of prejudices connected with epilepsy among their classmates. For
example, CWE are more often than others victims of bullying[32].
Educating children about epilepsy is an important step in alleviating the
stigma faced by CWE at school. Several studies were focused on improvement of
attitudes towards and knowledge of epilepsy among schoolchildren by means of
educational programs. Mudge and Turner reported an increase in children¡¯s
knowledge of epilepsy after a short education program[33]. Martiniuk
et al evaluated the potential of an epilepsy educational program to
improve epilepsy-related knowledge and attitudes in a population of healthy
children using a stratified, cluster randomized trial[34]. Bozkala
et al. then reported that an educational program focused on high-school
students in Turkey was associated with significant increase in knowledge of
epilepsy and more positive attitudes towards people with epilepsy[35].
Our recent study shows that educational animated video and educational drama
interventions significantly contribute to improving the knowledge of epilepsy
and reducing epilepsy-related stigma among children aged 9-11 years[36].
A supportive
family environment is one of the important protecting factors for CWE and
should not be neglected when trying to optimize their rehabilitation[37].
Childhood epilepsy brings emotional stress into their parents and can
deteriorate quality of life of the whole family. Especially psychological
well-being of mothers of CWE was found to be significantly impaired[38].
In order to help parents to overcome the difficulties related with epilepsy of
their children, several educational programs focused on them have been
developed and carried out. Lewis et al. reported on the efficacy of an epilepsy
program leading to a significant reduction of anxiety among parents of CWE[39].
Conceptual
and structural modelllng
Besides many studies describing individual factors influencing life of
CWE, some recent papers also focused on more complex understanding of the role
of individual factors and on clarification of their importance. The aim of
these papers was often to develop either a conceptual model using a qualitative
research technique or a structural model which may be psychometrically tested
using conventional structural equation modeling approach.
McEwan et
al carried out a qualitative investigation using the focus groups method
and proposed a conceptual model of quality of life and identity formation of
CWE[40]. Moffat et al built on this work and using similar
focus groups methodology, they developed a complex model of quality of life of
CWE[41]. Finally, Kerr et al summarized findings from many
qualitative studies both on CWE and adults with epilepsy and proposed a very
complex conceptual model which should be suitable for all people with epilepsy
regardless on their age[42]. Austin et al have developed and
tested a structural model of internalized stigma based on previous work of the
same group of authors on child´s attitude towards having epilepsy[43].
The model suggests that perceptions of stigma are associated especially with
two variables: fear of and worry about having epilepsy and need for information
and support. Relationships among variables in the internalized stigma model are
given in Figure 2. Wodrich et al. used a model-based approach to understanding
school status of CWE[44]. All the mentioned models addressed in some
way also school-related aspects of epilepsy. But these issues are not treated
in very comprehensive way and despite importance of these models they cannot
give answers to many questions arising in this context.
Conclusions
and recommendations for further research
It was clearly shown that despite significant research progress there
is still lack of fundamental understanding how the individual aspects influence
life of children with epilepsy. It may be partly due to the fact that most
studies devoted to this topic cover only limited area virtually ignoring other
aspects and thus do not provide (despite their undoubted contribution to the
knowledge base) a comprehensive view on this very complicated issue. In our
opinion, the future research should be thus focused on a more comprehensive
understanding based on combining of conceptual and structural models taking
into consideration in an appropriate way as many relevant factors as possible.
Development and subsequent verification of such models will undoubtedly require
a big effort and collaboration of child neurologists, psychologists,
educational experts and other professionals. Nevertheless, it is probably the
only way how to establish the needed theoretical background for further
interventions aimed at reduction of epilepsy-related stigma and improvement of
quality of life of CWE.
CONFLICT OF INTERESTS
The Authors have no conflicts of interest to declare.
REFERENCES
1. Forsgren L, Beghi E, Oun A,
Sillanpää M. The epidemiology of epilepsy in Europe - a
systematic review. Eur J Neurol 2005; 12: 245-253.
2. Kale R. Bringing epilepsy out of
the shadows. Brit Med J 1997; 315: 2-3.
3. de Boer H, Mula M, Sander JW. The global burden and stigma of epilepsy. Epilepsy Behav
2008; 12: 540¨C546.
4. Reynolds EH. ILAE/WHO global
campaign ¡®¡®Out of the Shadows¡¯¡¯: global and regional developments. Epilepsia
2001; 42: 1094-1100.
5. Kerr MP. The impact of epilepsy in
patients lives. Acta Neurol Scand 2012; 126: 1-19.
6. Fastenau PS, Shen J, Dunn DW,
Austin JK. Academic underachievement among children with epilepsy: proportion
exceeding psychometric criteria for learning disability and associated risk
factors. J Learn Disabil 2008; 41: 195-207.
7. Hesdorffer DC, Ludvigsson P, Olafsson
E, Gudmundsson G, Kjartansson O, Hauser WA. ADHD as a risk
factor for incident unprovoked seizures and epilepsy in children. Arch
General Psych 2004; 61: 731-736.
8. Dunn DW, Austin, JK.,
Harezlak J, Ambrosius W T. ADHD and epilepsy in childhood. Dev Med Child Neurol
2003; 45: 50-54.
9. Reilly C, Atkinson P, Das KB, Chin
RFC, Aylett SE, Burch V et al. Academic achievement in school-aged children
with active epilepsy: A population-based study. Epilepsia 2014; 55: 1910-1917.
10. Brabcova D, Zarubova J, Kohout J, Jost J,
Krsek P. Academic self-concept in children with epilepsy and its relation to
their quality of life. Neurol Res 2015; 37: 288-294.
11. Shackleton DP, Kasteleijn-Nolst Trenit¨¦ DG, de
Craen AJ, Vandenbroucke JP, Westendorp RG. Living with
epilepsy: long-term prognosis and psychosocial outcomes. Neurology 2003;
61: 64-70.
12. Berg AT, Baca CB, Loddenkemper T, Vickrey
BG, Dlugos D. Priorities in pediatric epilepsy
research: improving children's futures today. Neurology 2013; 81: 1166-1175.
13. Pan American Health Organization. Strategy and Plan of Action on Epilepsy. Washington, D.C.;
2011
14. International League Against
Epilepsy. Epilepsy Education Within the Statutory
School System. Epilepsia 2003, 44(Suppl. 6): 45-48
15. Marshall RM, Cupoli JM. Epilepsy and
education: the paediatrician¡¯s expanding role. Adv Pediatr
1986; 33: 159-180.
16. Reilly C, Neville BR. Academic
achievement in children with epilepsy: a review. Epilepsy Res 2011; 97:
112-123.
17. Oostrom KJ, Smeets-Schouten A, Kruitwagen
CLJJ, Peters ACB, Jennekens-Schinkel A. Not only a matter of epilepsy: early
problems of cognition and behavior in children with ¡®epilepsy only¡¯ ¨C a
prospective controlled study starting at diagnosis. Pediatrics 2003; 112:
1338-1344.
18. Williams J, Philips T, Griebel ML, Sharp
GB, Lange B, Edgar T et al. Factors associated with academic achievement in
children with controlled epilepsy. Epilepsy Behav 2001; 2: 217-233.
19. Harter S. The construction of the self: a
developmental perspective. New York: The Guilford Press; 1992
20. Boersma FJ, Chapman JW. The Student¡¯s
perception of ability scale: an instrument for measuring academic self-concept
in elementary school children¡¯s. Educ Psychol Meas 1979; 39:
1035-1041.
21. Mielke J, Adamolekun B, Ball D, Mundanda
T. Knowledge and attitudes of teachers toward epilepsy in Zimbabwe. Acta Neurol Scand 1997; 96: 133-137.
22. Birbeck GL, Chomba E, Atadzhanov M, Mbewe E, Haworth A. Zambian teachers: what do they know
about epilepsy and how can we work with them to decrease stigma? Epilepsy Behav
2006; 9: 275-280.
23. Babikar HE, Abbas IM. Knowledge,
practice and attitude toward epilepsy among primary and secondary school
teachers in south Gezira locality, Gezira state, Sudan. J Family
Community Med 2011; 18: 17-21.
24. Bannon M, Wildig C, Jones P. Teachers'
perceptions of epilepsy. Arch Dis Child 1992; 67: 1467-1471.
25. Wodrich D, Jarrar R, Buchhalter J, Levy
R, Gay C. Knowledge about epilepsy and confidence in instructing students with
epilepsy: teachers' responses to a new scale. Epilepsy Behav 2011; 20: 360-365.
26. Rosenthal R, Jacobson L. Pygmalion in the
classroom. New York: Holt, Reinhart and Winston; 1968.
27. MacLeod JS, Austin JK. Stigma in the
lives of adolescents with epilepsy: a review of the literature. Epilepsy Behav
2003; 4: 112-117.
28. Bishop M, Slevin B. Teachers' attitudes
toward students with epilepsy: results of a survey of elementary and middle
school teachers. Epilepsy Behav 2004; 5: 308-315.
29. Bekiroglu N, Özkan R, G¨¹rses C, Arpaci B,
Dervent A. A study on awareness and attitude of teachers on
epilepsy in Istanbul. Seizure 2004; 13: 517-522.
30. Brabcova D, Lovasova V, Kohout J,
Zarubova J. Familiarity with and attitudes towards epilepsy among teachers at
Czech elementary schools¡ªThe effect of personal experience and
subspecialization. Seizure 2012; 21: 461-465.
31. Aguiar BVK, Guerreiro MM, McBrian D,
Montenegro MA. Seizure impact on
the school attendance in children with epilepsy. Seizure 2007; 16:
698-702.
32. Hamiwka LD, Yu CG, Hamiwka LA, Sherman
EMS, Anderson B, Wirrell E. Are children with epilepsy at greater risk for
bullying than their peers? Epilepsy Behav 2009; 15: 308-315.
33. Mudge PR, Turner W. Health education on
epilepsy. Aust Fam Physician 1987; 16: 1356-1365.
34. Martiniuk AL, Speechley KN, Secco M,
Karen Campbell M. Development and psychometric properties of the Thinking about
Epilepsy questionnaire assessing children¡¯s knowledge and attitudes about
epilepsy. Epilepsy Behav 2007; 10: 595-603.
35. Bozkaya IO, Arhan E, Serdaroglu A, Soysal
AS, Ozkan S, Gucuyener K. Knowledge of, perception of, and attitudes toward
epilepsy of schoolchildren in Ankara and the effect of an education program.
Epilepsy Behav 2010; 17: 56-63.
36. Brabcova D, Lovasova V, Kohout J, Zarubova
J, Komarek V. Improving the knowledge of epilepsy and reducing epilepsy-related
stigma among children using educational video and educational drama-A
comparison of the effectiveness of both interventions. Seizure 2013; 22:
179-184.
37. Oostrom KJ, Schouten A, Kruitwagen CL,
Peters AC, Jennekens-Schinkel A. Parents´ perceptions of adversity introduced
by upheaval and uncertainty at the onset of childhood epilepsy. Epilepsia 2001;
42: 1452-1460.
38. Wirrell EC, Wood L, Hamiwka LD, Sherman
EM. Parenting stress in mothers of children
with intractable epilepsy. Epilepsy Behav 2008; 13: 169-173.
39. Lewis MA, Hatton CL, Salas I, Leake B,
Chiofalo N. Impact of the children´s epilepsy program on parents. Epilepsia 1991; 32: 365-374.
40. McEwan MJ, Espie CA, Metcalfe J, Brodie
MJ, Wilson MT. Quality of life and psychosocial development in adolescents with
epilepsy: a qualitative investigation using focus group methods. Seizure 2004;
13: 15-31.
41. Moffat C, Dorris L, Connor L, Espie CA.
The impact of childhood epilepsy on quality of life: A qualitative
investigation using focus group methods to obtain children¡¯s perspectives on
living with epilepsy. Epilepsy Behav 2009; 14: 179-189.
42. Kerr C, Nixon A, Angalakuditi M. The
impact of epilepsy on children and adult patients¡¯ lives: Development of a
conceptual model from qualitative literature. Seizure 2011; 20: 764-774.
43. Austin JK, Perkins SM, Dunn DW. A model for internalized stigma in children and adolescents with
epilepsy. Epilepsy Behav 2014; 36: 74-79.
44. Bohac G, Wodrich DL. A
model-based approach to understanding school status of students with epilepsy.
Epilepsy Behav 2013; 27: 4-8.
Peer reviewer: Suleyman AYDİN, Department of
Medical Biochemistry and Clinical Biochemistry (Firat Hormones Research Group),
School of Medicine, Firat University, 23119 Elazig, Turkey.
Refbacks
- There are currently no refbacks.