Epilepsy & Behavior 7 (2005) 687696

www.elsevier.com/locate/yebeh

Elementary school epilepsy survey (ESES): A new measure

of elementary school students knowledge and attitudes about epilepsy
Crystal Lowe-Pearce, Carol S. Cameld *
Departments of Psychology and Pediatrics, Dalhousie University, Halifax, NS, Canada
IWK Health Centre, Halifax, NS, Canada
Received 6 July 2005; revised 22 August 2005; accepted 22 August 2005
Available online 2 November 2005

Abstract
Objective. No peer-reviewed, published, psychometrically tested scales are available to assess elementary school students general
knowledge and attitudes about epilepsy. Such a scale is needed for evaluation of the eectiveness of classroom education programs.
The purpose of this work was to develop and validate a brief, reliable scale for grades 46 to assess students knowledge and attitudes
about epilepsy and persons diagnosed with epilepsy.
Methods. Development of the 22-item Elementary School Epilepsy Survey (ESES) followed standard protocol for scale development.
It includes a 12-item Knowledge subscale and a 10-item Attitudes subscale. The ESES was administered during regular classroom time
given and repeated 1 week later. No educational intervention took place.
Results. Mean age of the 155 students was 11 years (range 9.813.9): grade 4, 56 students; grade 5, 36; and grade 6, 63 students. The
ESES Total scale and Attitudes subscale had good internal consistency (Cronbachs a = 0.72 and 0.81, respectively). As expected, the
Knowledge subscale had low internal reliability (Cronbachs a = 0.50). Testretest scores indicated good reliability and strong discriminant validity, with signicant increases noted in all ESES scores with increasing age and in those who knew someone with epilepsy.
Conclusion. The ESES detects developmental and experiential trends in students knowledge and attitude about epilepsy. It has good
internal consistency and testretest reliability.

2005 Elsevier Inc. All rights reserved.
Keywords: Childhood epilepsy; Elementary school education program; Knowledge; Attitudes

1. Introduction
Like other chronic illnesses, childhood epilepsy has been
associated with psychological diculties and perceived
poorer quality of life, and has implications for social
adjustment in childhood [15]. Epilepsy is both a medical
disorder and a social label in which the psychosocial aspects frequently cause greater diculties than the physical
symptoms of the disease itself [6]. Previously, childrens
psychosocial diculties were attributed primarily to epilepsy-associated biological factors. More recently, social factors including stigmatization, exclusion from social
activities, and prejudice are also felt to inuence social
*

Corresponding author. Fax: +1 902 470 7913.

E-mail address: Cameld@dal.ca (C.S. Cameld).

1525-5050/$ - see front matter
2005 Elsevier Inc. All rights reserved.
doi:10.1016/j.yebeh.2005.08.022

adjustment [3,5,7]. Children with chronic illness are especially vulnerable to diculties within their social network.
Early negative inuences with peers lead to problems with
adaptation to their diagnosis and management of epilepsy.
In addition, children may be particularly vulnerable to
longer-term adjustment problems [8].
One factor strongly inuencing how someone responds
to another is his or her attitude toward that person. Attitude is an enduring positive, negative, or mixed evaluation
of a person, object, or idea [9,10]. It involves a predisposition to think, feel, and behave in a particular way toward
people and consists of three main elements: an aective element (feelings and emotions toward a group of people, often based on values); a behavioral element (actions toward
a group of people); and a cognitive element (beliefs and
thoughts about the properties of that group of people).

688

C. Lowe-Pearce, C.S. Cameld / Epilepsy & Behavior 7 (2005) 687696

Attitudes develop in two ways: (1) primary socialization

involving immediate family, extended family, classic and
operant conditioning, modeling, and vicarious learning;
and (2) secondary socialization encompassing social comparison with the wider society via the media, school, peer
groups, etc. The critical period for attitude formation is between 12 and 30 years, with crystallization of specic attitudes occurring between 21 and 30 years [11]. This occurs
at the same time in development as when the individual
makes important life decisions concerning personal identity
and values, relationships, professional and career choices,
and religious and political aliation. Beyond this critical
period, attitudes remain relatively stable, apart from a central conservative drift.
Education is a signicant method to inuence the attitudes and behaviors of individuals. Changing how society
views and behaves toward those with epilepsy may result
in decreased psychosocial diculties, and early education
of children could produce a strong eect of interaction
with their peers on the childs day-to-day coping and
adjustment [12]. One function of attitude is to provide
the person expressing the attitude with a sense of knowledge and control [13]. Providing accurate information
about epilepsy at an early age may result in decreased
stigma and secrecy and more positive attitudes toward
epilepsy [12].
Standardized, validated, and reliable tools specic to the
assessment of knowledge and attitudes about epilepsy do
exist for adult populations [1418], and a 37-item Teen Survey on Epilepsy with both an Attitude Index and an
Awareness Index was developed by the Epilepsy Foundation of America [19]. The scale assesses the respondents
awareness of epilepsy, knowledge about the health condition, stigmas associated with epilepsy, and awareness of
several health conditions. There are currently no peer-reviewed, published, psychometrically tested scales for
assessing elementary school students general knowledge
and attitudes about epilepsy.
The purpose of the current research is to develop and
validate a brief, reliable scale for children in grades 4, 5,
and 6 (aged 1012 years) to assess their knowledge and attitudes about epilepsy and persons diagnosed with epilepsy.
The research consists of two studies: development of the
assessment scale (Study 1), and validation of the scale
(Study 2).
2. Methods
2.1. Study 1: Development of the Elementary School
Epilepsy Survey (ESES)
The development of this measure followed standard
protocol for scale development, including literature review,
consultation with experts, and careful question creation.
The content areas taught in the school presentations currently oered through the Epilepsy Association of Nova
Scotia were specically selected, although several items

were adapted from items on existing measures with slight

wording changes to reect appropriate language for a
younger age range [19,20].
The ESES is a 22-item scale that reects language and
content suitable for children aged 1012 years (Appendixes
A and B). Two elementary school teachers reviewed the
ESES for simplicity, readability, content, and formatting,
and a grade 5 student reviewed the scale to identify items
not easily understood.
The ESES takes 15 minutes to complete. The survey
begins with a demographic section and two questions
asking the child if he or she has heard or read about epilepsy or if he or she knows anyone with epilepsy. Since
we administered the survey twice to assess testrest reliability, we also developed a second version of the survey.
The second version is identical to the rst, but also asks
if the child read about or talked about epilepsy with an
adult since the rst survey administration. The main 22item printed ESES survey follows, and each item begins
with the statement I think. . . Each statement is read
out loud to the class (e.g., I think epilepsy is a sickness
inside the brain), and the students are asked to choose
one of the response options ranging from strongly disagree to strongly agree. A 6-point visual analog format is used, with dierent-sized sad faces and happy
faces representing the degree to which the child disagrees
or agrees. The items are worded such that the correct
response pattern varies.
The ESES contains two subscales: (1) Knowledge Subscale of 12 items that assess factual information about epilepsy and persons with epilepsy (e.g., etiology, medical
information, rst aid, and safety); (2) Attitude Subscale
of 10 items that assess attitude toward people with epilepsy
(e.g., attributes associated with having epilepsy, eects of
having epilepsy on self and others learning and daily living, and restrictions that should apply to individuals with
epilepsy).
2.2. Study 2: Validation of the Elementary School Epilepsy
Survey
2.2.1. Participants
Participants were children in grades 4, 5, and 6 from
ve elementary schools in the Halifax Regional School
Board and the Southwest District School Board in Nova
Scotia, Canada. Only those classrooms that had not previously received the EANS grade 5 education session
were selected. All children in the class were invited to
participate, and there were no exclusion criteria. Information about the study and parental consent forms were
distributed to 447 students. Written parental consent and
verbal assent from students (requested before the scale
was administered) were required for study participation.
Research and ethics approval was received from both
the Department of Psychology at Dalhousie University
and the Halifax Regional and Southwest District School
Boards.

C. Lowe-Pearce, C.S. Cameld / Epilepsy & Behavior 7 (2005) 687696

2.2.2. Sample size

Antonak and Levneh recommend that when testing the
properties of a new scale, the sample size should be ve
times the number of items on the scale [20]. Consent forms
were returned by 185 students (response rate, 41%). Of
those who returned the forms, 20 students were not given
consent to participate. Nine students were not present
when the scales were administered, and one student of
those given consent chose not to participate. The total
number of students participating was 155, which accounted
for 35% of the total number of packages sent out to parents. The nal sample size satises the power needed for
our 22-item scale. Of the 155 students who participated
in the rst administration of the scale, 139 (90%) returned
for the second administration 1 week later. Again, the
remaining sample size of 139 students for the second
administration was more than sucient.
2.2.3. Procedure
Administration of the ESES scale took place during the
regular school day in a group setting. Full instructions
given to the children are provided in Appendixes A and
B. In addition to the items being presented in writing on
the questionnaire, each item was read aloud by the
researcher as the students completed the questionnaire.
This was to help oset any dierences in reading level.
The researcher returned a week later (range, 513 days)
to readminister the ESES scale and used the same presentation procedures described above. No educational intervention occurred within this time frame. The purpose of
the second version was to be certain that answers remained
stable over a short time.
2.2.4. Scoring of the ESES
Scoring of the ESES was completed using a predetermined coding scheme consisting of a 6-point scale ranging
from 3 to 3 or vice versa. A transparent coding sheet was
developed to assist with scoring of the questionnaires.
Missing data were not replaced for analyses of the ESES.
On the rst administration of the ESES, there were 23
missing data points on the 24-item scale administered to
155 children. This means that 23 of a total of 3720 data
points (24 items 155 children) were missing. This results
in a percentage of missing data less than 0.01%. On the second administration of the ESES, there were 34 missing data
points on the 25-item scale administered to 139 children,
less than 0.01%.
2.2.5. Statistical analyses
Data from the completed questionnaires were analyzed
using SPSS Version 10 software (2001) to obtain information about validity and reliability of ESES, and the relationship of the total and subscale scores to the childs
demographic characteristics [21]. An a of 0.05 was used
to determine signicance. Internal reliability was computed
using Cronbachs a and an oblique rotated principal components analysis. Testretest reliability was computed

689

using Pearsons correlations. Preliminary comparisons of

scores with demographics were completed with data from
the rst administration of the ESES, using v2 and ANOVA
analyses.
3. Results
3.1. Demographics
Table 1 lists the distributions of demographic characteristics for participants by age. The mean age of the sample
was 11 years 3 months (SD 0.95). The numbers of students participating from each grade level were: grade 4,
56 students (aged 9 years, 8 months to 10 years,11 months);
grade 5, 36 students (aged 10 years, 0 months to 12 years, 2
months); and grade 6, 63 students (aged 11 years, 6 months
to 13 years, 11 months). Fifty-three percent were male and
47% were female.
On the rst administration, when asked if they had ever
heard/read about epilepsy, 52% responded yes and 48%
responded no. When asked if they knew a person with
epilepsy, 23% responded yes and 77% responded no.
On the second administration, when asked the same questions, the students responded with similar frequencies.
When asked if they had had discussed epilepsy with an
adult between administrations, 9% responded yes and
91% responded no.
3.2. Internal validation
3.2.1. Internal consistency reliabilities
The ESES Total score had good internal consistency,
as indicated by the Cronbach a of 0.72 for the rst ESES
administration and 0.83 for the second. These reliabilities
exceeded the standard criterion of 0.70 for adequate reliability. However, the corrected itemtotal correlations
varied, ranging from 0.06 to 0.56 for the rst
administration and from 0.00 to 0.68 for the second
administration. The lower correlations suggest that each
item is fairly independent of the total score. Analyses
also showed that the overall Cronbach a remained the
same when any one of the 22 items was removed
(0.690.73 for the rst administration and 0.800.83 for
the second administration). This further indicates that
each item does not add unique information to the total
score (Table 2).
The ESES Attitudes subscale showed good internal consistency. Cronbachs a was 0.81 for the rst ESES administration and 0.84 for the second. However, the corrected
itemtotal correlations varied, ranging from 0.09 to 0.70
for the rst administration and from 0.10 to 0.70 for the
second administration. Items with higher corrected item
total correlations were not always consistent from the rst
administration to the second. The lower correlations suggest that each item is fairly independent of the total score.
Analyses showed that the overall Cronbach a remained
about the same when any one of the 10 items was removed

690

C. Lowe-Pearce, C.S. Cameld / Epilepsy & Behavior 7 (2005) 687696

Table 1
Distributions of demographic characteristics for participants by age
Age (years)
9
(n = 14)

10
(n = 51)

11
(n = 43)

12
(n = 46)

13
(n = 1)

14

42
9

26
17

1
45

8
6

29
22

25
18

20
26

Heard about epilepsy (T1)?

Yes (n = 81)
No (n = 74)

4
10

16
35

22
21

39
7

Know someone with epilepsy (T1)?

Yes (n = 35)
No (n = 120)

1
13

5
46

7
36

22
24

1
9

6
39

4
29

1
41

Grade
4 (n = 56)
5 (n = 36)
6 (n = 63)
Sex
Male (n = 82)
Female (n = 73)

Talked with an adult between sessions (T2)?

Yes (n = 12)
No (n = 119)

Table 2
Total scale: Corrected itemtotal correlations and Cronbachs a
Item

1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
a
b

First administrationa

Table 3
Attitudes subscale: Corrected itemtotal correlations and Cronbachs a

Second administrationb

Corrected itemtotal
correlation

a if Item
deleted

Corrected itemtotal
correlation

a if Item
deleted

0.08
0.06
0.09
0.09
0.16
0.27
0.26
0.38
0.28
0.25
0.31
0.16
0.45
0.48
0.56
0.48
0.13
0.46
0.30
0.42
0.31
0.44

0.73
0.73
0.73
0.73
0.72
0.71
0.71
0.70
0.71
0.71
0.71
0.72
0.70
0.70
0.69
0.70
0.72
0.70
0.71
0.70
0.71
0.70

0.24
0.05
0.00
0.23
0.18
0.44
0.13
0.38
0.48
0.38
0.41
0.43
0.56
0.54
0.68
0.57
0.18
0.66
0.58
0.62
0.16
0.66

0.82
0.83
0.83
0.82
0.83
0.81
0.83
0.82
0.81
0.82
0.81
0.82
0.81
0.81
0.80
0.81
0.83
0.80
0.81
0.81
0.83
0.81

Overall Cronbachs a = 0.72.

Overall Cronbachs a = 0.83.

(0.760.83 for the rst administration and 0.800.86 for the

second administration) (Table 3).
The ESES Knowledge subscale was found to have low
internal reliability. Cronbachs a was 0.50 for the rst ESES
administration and 0.56 for the second, indicating rather
poor internal consistency on this scale. The corrected

Item

13
14
15
16
17
18
19
20
21
22
a
b

First administrationa

Second administrationb

Corrected itemtotal
correlation

a if Item
deleted

Corrected itemtotal
correlation

a if Item
deleted

0.59
0.65
0.63
0.70
0.09
0.55
0.36
0.48
0.24
0.61

0.77
0.76
0.76
0.75
0.83
0.77
0.79
0.78
0.81
0.77

0.60
0.63
0.67
0.65
0.12
0.65
0.60
0.64
0.10
0.70

0.81
0.81
0.80
0.80
0.86
0.80
0.81
0.81
0.86
0.80

Overall Cronbachs a = 0.80.

Overall Cronbachs a = 0.83.

itemtotal correlations were also low, ranging from 0.07

to 0.30 for the rst administration and from 0.00 to 0.41
for the second administration. The lower correlations suggest that each item is fairly independent of the total score.
Analyses also showed that the overall Cronbach a remained about the same when any one of the 12 items
was removed (0.450.52 for the rst administration and
0.500.60 for the second administration) (Table 4).
3.2.2. Principal components analyses
Results of a principal components analysis (PCA),
using oblique rotation, were consistent with the internal
reliability analyses. When a PCA was conducted on the
rst administration of the scale, a total of eight factors
emerged, which accounted for 65% of the variance of
the ESES. Results indicated that although a clear factor

C. Lowe-Pearce, C.S. Cameld / Epilepsy & Behavior 7 (2005) 687696

Table 4
Knowledge subscale: Corrected itemtotal correlations and Cronbachs a
Item

1
2
3
4
5
6
7
8
9
10
11
12
a
b

First administrationa

Second administrationb

Corrected itemtotal
correlation

a if Item
deleted

0.20
0.07
0.09
0.16
0.19
0.25
0.30
0.29
0.11
0.24
0.30
0.13

0.49
0.52
0.51
0.50
0.49
0.47
0.45
0.46
0.50
0.48
0.45
0.50

Corrected itemtotal
correlation
0.28
0.07
0.00
0.16
0.23
0.41
0.23
0.34
0.36
0.28
0.34
0.21

a if Item
deleted
0.53
0.60
0.59
0.56
0.54
0.50
0.54
0.51
0.52
0.53
0.51
0.55

Overall Cronbachs a = 0.51.

Overall Cronbachs a = 0.56.

emerged for the attitude-based items, the knowledgebased items did not cluster (Table 5). One factor contained most of the attitude items, while the knowledge
items were scattered among the remaining seven components. When fewer factors were forced, the patterns did
not improve.
3.2.3. Reliability analyses
Results indicated signicant testretest reliabilities on
the ESES Total score (r = 0.71), Knowledge and Attitudes
subscale scores (r = 0.66 and r = 0.65, respectively), and
individual item scores (r = 0.180.59) (Table 6).
3.3. Scores by demographic characteristics
Interestingly, developmental trends could be seen in
the response patterns of participating children. We compared the childrens responses on the rst administration
of the scale across age ranges. Analyses across grade
levels are not reported because the overlap of ages in
each grade level makes the developmental trends less
clear.
3.3.1. Experience with epilepsy
The number of children who had heard/read about epilepsy signicantly increased with age, v2(4, N = 155) =
32.69, P < 0.05. With each age level, the number of
children who had heard/read about epilepsy increased
(Table 1).
The number of children who knew someone with epilepsy also signicantly increased with age, v2(4, N = 155) =
24.71, P < 0.05. With each age level, more children knew
someone with epilepsy, with a large increase between 11
and 12 years of age.
3.3.2. ESES scores by age
There was a signicant increase in ESES total score (in
the positive direction) with age, F(4, 138) = 4.13,

691

Table 5
Factor analysis yielding eight components accounting for 65% of the
variance
Item

1
2
3
4
5

Oblimin rotated component loadingsa

1

0.18
0.11

0.17

0.76

0.14
0.16

0.11
0.15

0.46

0.29
0.23

0.36

0.23

0.32

0.23

0.11

0.29

0.40

0.21
0.21

0.42

0.14

0.71

10
11
12
13

0.50

14

0.77

15

0.70

16

0.68

17

0.76
0.29

0.28

0.10

0.78

0.76

0.21

0.37

0.25

0.17

0.46

0.21

19

0.58

20

0.78

0.13

0.26

21

0.16
0.34

0.10

0.20
0.23

0.77
0.29

0.12
0.20

0.18

0.20

0.87

0.11
0.13

0.13

0.38
0.28

0.21
0.21

0.12

0.40

0.15

0.60

0.18

0.13
0.10

0.19
0.24

0.21

0.17

0.23
0.24
0.21

0.15

0.40

0.13

0.84

0.82

0.16

18

22

0.17

0.44

0.17

0.26
0.19

0.34

0.13

0.26

0.13

0.11

0.81
0.15

An item was considered to load most strongly on a component if its

value was >0.3, and at least double the loadings on other components.
Values in boldface meet these criteria. All blank cells had values <0.10.

P < 0.05. There was also a signicant increase in ESES

Knowledge subscale (in the positive direction) with age,
F(4, 143) = 2.84, P < 0.05 and in the ESES Attitudes subscale (in the positive direction) with age, F(4, 147) = 4.17,
P < 0.05.
3.3.3. ESES scores by sex
Females scored signicantly better than males, as indicated by the ESES total score, F(1, 138) = 15.09,
P < 0.05, ESES Knowledge subscale, F(1, 143) =
6.95, P < 0.05 and ESES Attitudes subscale, F(1, 147) =
16.94, P < 0.05.

692

C. Lowe-Pearce, C.S. Cameld / Epilepsy & Behavior 7 (2005) 687696

Table 6
Testretest reliabilities for ESES items and scales
Item

Testretest reliability (r)

1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22

0.56a
0.32a
0.44a
0.57a
0.45a
0.51a
0.59a
0.51a
0.18b
0.35a
0.51a
0.52a
0.45a
0.40a
0.52a
0.51a
0.49a
0.56a
0.32a
0.43a
0.46a
0.43a

Knowledge scale (Items 112)

Attitudes scale (Items 1322)
Total scale

0.66a
0.65a
0.71a

a
b

Correlation is signicant at the 0.01 level (two-tailed).

Correlation is signicant at the 0.05 level (two-tailed).

3.3.4. Discriminant validity

There was no signicant dierence in the ESES Knowledge subscale score between those who had heard/read
about epilepsy and those who had not, F(1, 143) = 1.18,
P = 2.79. However, a signicant dierence was found in
the ESES Attitudes subscale score between those who
had heard/read about epilepsy and those who had not, with
those who had heard/read about epilepsy scoring better on
this subscale, F(1, 147) = 20.72, P < 0.05. Because of this,
the ESES total score was signicantly better among children who had heard or read about epilepsy, as compared
with those who had not (F(1, 138) = 10.76, P < 0.05).
Signicant increases were also noted in ESES Total,
Knowledge subscale, and Attitudes subscale scores in those
who knew someone with epilepsy, with those who knew
someone with epilepsy scoring better on each section: Total:
F(1, 138) = 8.77, P < 0.05; Knowledge: F(1, 143) = 6.54,
P < 0.05; and Attitudes: F(1, 147) = 8.44, P < 0.05.
4. Discussion
The Elementary School Epilepsy Survey has good test
retest reliability and strong discriminant validity. The 22item ESES can be used in the classrooms of grades 4, 5,
and 6 to evaluate an epilepsy teaching program and its impact on knowledge and attitudes toward epilepsy. This
should help school administrators to rationalize the time
used within the elementary school curriculum to teach
about childhood illness. However, programs such as that

taught by the education coordinator of the Epilepsy Association of Nova Scotia now need to document the impact
of the teaching intervention.
It is important to note that the internal consistency of
the ESES reliabilities varies. Internal reliabilities are stronger for the Total score and Attitudes subscale than for the
Knowledge subscale. The PCA revealed that, as expected,
most of the predetermined attitude items grouped onto
one factor that accounted for 20% of the variance. Exceptions were Items 17 and 21. Interestingly, children in all age
groups answered Item 17 in the direction opposite than
expected, indicating that the question either was not understood or was interpreted dierently than intended. The
question read, I think people with epilepsy need to be protected more than other people. Most children strongly
agreed with this question. If the children were to answer
this question similarly to the other attitude questions
(i.e., assuming children with epilepsy are just like you
and me), they should have disagreed with this item. As this
question was not answered as expected, it should be removed or reworded in another version of this scale.
Although children answered Item 21 in the direction
expected, it did not group with the other attitude questions.
Therefore, in future versions, it should not be part of the
Attitudes subscale.
Unlike the Attitudes subscale, the predetermined knowledge items did not group together in a clear pattern, but
formed seven other factors that accounted for only 44%
of the remaining variance. One explanation for the unclear
patterns in the Knowledge subscale is that the questions
were very broad, and did not tap any one specic area of
knowledge about epilepsy. Although many participants
had heard of epilepsy before, and may even have had experience with epilepsy, the scale seemed to tap into dierent
pockets of participant knowledge, which probably varied
between the children. Item renement on the next version
of the scale should address this issue.
In addition, this preliminary version of the ESES is able
to detect developmental trends in students knowledge
about epilepsy. Also, it is sensitive to dierences in the
knowledge and attitudes of students who have had previous experience with epilepsy versus those who have not.
This allows one to predict that a more rened version of
the tool will be suitable as an evaluation tool, for assessing
the attitudes and knowledge of elementary school students,
as well as changes that might occur as a result of an epilepsy-specic education program. Continued renement of the
ESES is important, as no such measure currently exists for
use with elementary school students.
The ESES scale will ultimately be used by our provincial
epilepsy association to assess childrens knowledge and
attitudes about epilepsy and persons with epilepsy, and as
an evaluation tool to assess the eectiveness of the existing
grade 5 education program. As no other scale exists at this
time, it is hoped that the ESES scale will have a broad
applicability and usefulness for other epilepsy associations
in Canada and internationally.

C. Lowe-Pearce, C.S. Cameld / Epilepsy & Behavior 7 (2005) 687696

Appendix A
ESES Form 1
Name: ___________________________Todays Date:_______________
Age: _______ Grade:__________ Birthday:__________________
Have you ever heard or read about epilepsy?__________________________
Do you know anyone who has epilepsy?______________________________
Instructions: Circle a face to show how you feel about each statement below:
1. I think anyone who has seizures has epilepsy.

2. I think epilepsy is a sickness inside the brain.

3. I think there are dierent kinds of epilepsy.

4. I think children sometimes stop having epilepsy as they get older.

5. I think people with epilepsy are always unconscious during a seizure.

6. I think people with epilepsy often die from their seizures.

7. I think doctors always know what causes epilepsy.

8. I think people with epilepsy always need to go to the

hospital when they have a seizure.
9. I think we should put something in a persons mouth
when they are having a seizure.
10. I think we should try to wake up a person with
epilepsy when they are having a seizure.
11. I think people with epilepsy can ride a bike safely.

12. I think I could catch epilepsy from someone who had it.

13. I think people with epilepsy make it hard for other

students in their class to learn.
14. I think people with epilepsy are scary.

15. I think people with epilepsy are dangerous.

16. I think people with epilepsy are not as smart as other people.

Line missing

693

694

C. Lowe-Pearce, C.S. Cameld / Epilepsy & Behavior 7 (2005) 687696

17. I think people with epilepsy need to be protected

more than other people.
18. I think people with epilepsy are clumsy.

19. I think people with epilepsy should be allowed in my class.

20. I think people with epilepsy lie and steal more than other people.

21. I think people with epilepsy should not have to do chores.

22. I think people with epilepsy are mostly just like you and me.

Appendix B
ESES Form 2
Name:___________________________ Todays Date:_______________
Age: _______ Grade: __________ Birthday:__________________
Are you male or female?_____________
Have you ever heard or read about epilepsy?_______________________________
Do you know anyone who has epilepsy?____________________________________
Have you read about or discussed epilepsy with an adult since last week?
____________________________________
Instructions: Circle a face to show how you feel about each statement below:
1. I think anyone who has seizures has epilepsy.

2. I think epilepsy is a sickness inside the brain.

3. I think there are dierent kinds of epilepsy.

4. I think children sometimes stop having epilepsy as they get older.

5. I think people with epilepsy are always unconscious during a seizure.

6. I think people with epilepsy often die from their seizures.

7. I think doctors always know what causes epilepsy.

Line missing

C. Lowe-Pearce, C.S. Cameld / Epilepsy & Behavior 7 (2005) 687696

695

8. I think people with epilepsy always need to go to the hospital

when they have a seizure.
9. I think we should put something in a persons mouth when
they are having a seizure.
10. I think we should try to wake up a person with epilepsy
when they are having a seizure.
11. I think people with epilepsy can ride a bike safely.

12. I think I could catch epilepsy from someone who had it.

13. I think people with epilepsy make it hard for other

students in their class to learn.
14. I think people with epilepsy are scary.

15. I think people with epilepsy are dangerous.

16. I think people with epilepsy are not as smart as other people.

17. I think people with epilepsy need to be protected

more than other people.
18. I think people with epilepsy are clumsy.

19. I think people with epilepsy should be allowed in my class.

20. I think people with epilepsy lie and steal more than other people.

21. I think people with epilepsy should not have to do chores.

22. I think people with epilepsy are mostly just like you and me.

References
[1] Dodrill CB, Beier R, Kasparick M, et al. Psychosocial problems in
adults with epilepsy: comparison ndings from four countries.
Epilepsy 1984;25:17683.
[2] Cadman D, Boyle M, Szatmari P, et al. Chronic illness, disability,
and mental and social well-being: ndings of the Ontario child health
study. Pediatrics 1987;79:80513.
[3] Cameld C, Cameld P, Smith B, et al. Biologic factors as
predictors of social outcome of epilepsy in intellectually
normal children: a population-based study. J Pediatr 1993;122:
86973.
[4] Levin R, Banks S, Berg B. Psychosocial dimensions of epilepsy: a
review of the literature. Epilepsia 1998;29:60516.

[5] Austin JK, MacLeod J, Dunn DW, et al. Measuring stigma in

children with epilepsy and their parents: instrument development and
testing. Epilepsy Behav 2004;5:47282.
[6] Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the
stigma of a chronic neurological disorder. Lancet Neurol
2005;4:1718.
[7] Sillanpaa M, Haataja L, Shinnar S. Perceived impact of childhoodonset epilepsy on quality of life as an adult. Epilepsia 2004;45:9717.
[8] LaGreca AM. Social consequences of pediatric conditions: fertile
area for future investigation and intervention? J Pediatr Psychol
1990;15:285307.
[9] Eagly AH, Chaiken S. Attitude structure and function. In: Gilbert
DT, Fiske ST, editors. Handbook of social psychology, 4th ed., Vol.
1. New York: McGrawHill; 1998. p. 269322.

696

C. Lowe-Pearce, C.S. Cameld / Epilepsy & Behavior 7 (2005) 687696

[10] Brehm S, Kassin S, Fein S. Social psychology. 5th ed. London: HoughtonMiin; 2002. ch. 6.
[11] Sears DO, Abeles RP. Attitudes and opinions. Annu Rev Psychol
1969;20:25388.
[12] Gordon N, Sillanpaa M. Epilepsy and prejudice with particular
relevance to childhood. Dev Med Child Neurol 1997;39:777
81.
[13] Katz A. The science of quality of life. J Chron Disabil
1987;40:45963.
[14] Long L, Reeves A, Moore JL, et al. An assessment of
epilepsy patients knowledge of their disorder. Epilepsia
2000;41:72731.
[15] Gouvier WD, Brown LM, Prestholdt PH, et al. A survey of
common misconceptions about epilepsy. Rehabil Psychol
1995;40:519.

[16] Antonak RF, Rankin PR. Measurement and analysis of knowledge

and attitudes toward epilepsy and persons with epilepsy. Social Sci
Med 1982;16:15913.
[17] Gajjar M, Geva E, Humphries T, et al. A new scale to assess culturespecic beliefs and attitudes about epilepsy. Epilepsy Behav
2000;1:23555.
[18] Young GB, Derry P, Hutchinson I, et al. An epilepsy questionnaire
study of knowledge and attitudes in Canadian college students.
Epilepsia 2002;43:6528.
[19] The Epilepsy Foundation National Teen Survey on Epilepsy: report
of ndings. Epilepsy Foundation of America; 2001.
[20] Antonak RF, Livneh H. The measurement of attitudes toward people
with disabilities: methods, psychometrics and scales. Springeld,
IL: Charles C Thomas; 1988.
[21] SPSS Version 10 [Computer Software]. 2001. Chicago, IL.