Elementary school epilepsy survey (ESES): A new measure of elementary school students’ knowledge and attitudes about epilepsy

www.elsevier.com/locate/yebeh

Epilepsy & Behavior 7 (2005) 687–696

Elementary school epilepsy survey (ESES): A new measureof elementary school students� knowledge and attitudes about epilepsy

Crystal Lowe-Pearce, Carol S. Camfield *

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 2005Available online 2 November 2005

Abstract

Objective. No peer-reviewed, published, psychometrically tested scales are available to assess elementary school students� generalknowledge and attitudes about epilepsy. Such a scale is needed for evaluation of the effectiveness of classroom education programs.The purpose of this work was to develop and validate a brief, reliable scale for grades 4–6 to assess students� knowledge and attitudesabout 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 timegiven and repeated 1 week later. No educational intervention took place.

Results. Mean age of the 155 students was 11 years (range 9.8–13.9): grade 4, 56 students; grade 5, 36; and grade 6, 63 students. TheESES Total scale and Attitudes subscale had good internal consistency (Cronbach�s a = 0.72 and 0.81, respectively). As expected, theKnowledge subscale had low internal reliability (Cronbach�s a = 0.50). Test–retest scores indicated good reliability and strong discrim-inant validity, with significant 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 goodinternal consistency and test–retest 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 beenassociated with psychological difficulties and perceivedpoorer quality of life, and has implications for socialadjustment in childhood [1–5]. Epilepsy is both a medicaldisorder and a ‘‘social label’’ in which the psychosocial as-pects frequently cause greater difficulties than the physicalsymptoms of the disease itself [6]. Previously, children�spsychosocial difficulties were attributed primarily to epilep-sy-associated biological factors. More recently, social fac-tors including stigmatization, exclusion from socialactivities, and prejudice are also felt to influence social

1525-5050/$ - see front matter � 2005 Elsevier Inc. All rights reserved.

doi:10.1016/j.yebeh.2005.08.022

* Corresponding author. Fax: +1 902 470 7913.E-mail address: [email protected] (C.S. Camfield).

adjustment [3,5,7]. Children with chronic illness are espe-cially vulnerable to difficulties within their social network.Early negative influences with peers lead to problems withadaptation to their diagnosis and management of epilepsy.In addition, children may be particularly vulnerable tolonger-term adjustment problems [8].

One factor strongly influencing how someone respondsto another is his or her attitude toward that person. Atti-tude is an enduring positive, negative, or mixed evaluationof a person, object, or idea [9,10]. It involves a predisposi-tion to think, feel, and behave in a particular way towardpeople and consists of three main elements: an affective ele-ment (feelings and emotions toward a group of people, of-ten based on values); a behavioral element (actions towarda group of people); and a cognitive element (beliefs andthoughts about the properties of that group of people).

mailto:[email protected]

688 C. Lowe-Pearce, C.S. Camfield / Epilepsy & Behavior 7 (2005) 687–696

Attitudes develop in two ways: (1) primary socializationinvolving immediate family, extended family, classic andoperant conditioning, modeling, and vicarious learning;and (2) secondary socialization encompassing social com-parison with the wider society via the media, school, peergroups, etc. The critical period for attitude formation is be-tween 12 and 30 years, with crystallization of specific atti-tudes occurring between 21 and 30 years [11]. This occursat the same time in development as when the individualmakes important life decisions concerning personal identityand values, relationships, professional and career choices,and religious and political affiliation. Beyond this criticalperiod, attitudes remain relatively stable, apart from a cen-tral conservative drift.

Education is a significant method to influence the atti-tudes and behaviors of individuals. Changing how societyviews and behaves toward those with epilepsy may resultin decreased psychosocial difficulties, and early educationof children could produce a strong effect of interactionwith their peers on the child�s day-to-day coping andadjustment [12]. One function of attitude is to providethe person expressing the attitude with a sense of knowl-edge and control [13]. Providing accurate informationabout epilepsy at an early age may result in decreasedstigma and secrecy and more positive attitudes towardepilepsy [12].

Standardized, validated, and reliable tools specific to theassessment of knowledge and attitudes about epilepsy doexist for adult populations [14–18], and a 37-item Teen Sur-vey on Epilepsy with both an Attitude Index and anAwareness Index was developed by the Epilepsy Founda-tion of America [19]. The scale assesses the respondents�‘‘awareness of epilepsy, knowledge about the health condi-tion, stigmas associated with epilepsy, and awareness ofseveral health conditions.’’ There are currently no peer-re-viewed, published, psychometrically tested scales forassessing elementary school students� general knowledgeand attitudes about epilepsy.

The purpose of the current research is to develop andvalidate a brief, reliable scale for children in grades 4, 5,and 6 (aged 10–12 years) to assess their knowledge and atti-tudes about epilepsy and persons diagnosed with epilepsy.The research consists of two studies: development of theassessment 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 standardprotocol for scale development, including literature review,consultation with experts, and careful question creation.The content areas taught in the school presentations cur-rently offered through the Epilepsy Association of NovaScotia were specifically selected, although several items

were adapted from items on existing measures with slightwording changes to reflect appropriate language for ayounger age range [19,20].

The ESES is a 22-item scale that reflects language andcontent suitable for children aged 10–12 years (AppendixesA and B). Two elementary school teachers reviewed theESES for simplicity, readability, content, and formatting,and a grade 5 student reviewed the scale to identify itemsnot easily understood.

The ESES takes 15 minutes to complete. The surveybegins with a demographic section and two questionsasking the child if he or she has heard or read about epi-lepsy or if he or she knows anyone with epilepsy. Sincewe administered the survey twice to assess test–rest reli-ability, we also developed a second version of the survey.The second version is identical to the first, but also asksif the child read about or talked about epilepsy with anadult since the first survey administration. The main 22-item printed ESES survey follows, and each item beginswith the statement ‘‘I think. . .’’ Each statement is readout loud to the class (e.g., ‘‘I think epilepsy is a sicknessinside the brain’’), and the students are asked to chooseone of the response options ranging from ‘‘strongly dis-agree’’ to ‘‘strongly agree.’’ A 6-point visual analog for-mat is used, with different-sized sad faces and happyfaces representing the degree to which the child disagreesor agrees. The items are worded such that the ‘‘correct’’response pattern varies.

The ESES contains two subscales: (1) Knowledge Sub-scale of 12 items that assess factual information about epi-lepsy and persons with epilepsy (e.g., etiology, medicalinformation, first aid, and safety); (2) Attitude Subscaleof 10 items that assess attitude toward people with epilepsy(e.g., attributes associated with having epilepsy, effects ofhaving epilepsy on self and others� learning and daily liv-ing, and restrictions that should apply to individuals withepilepsy).

2.2. Study 2: Validation of the Elementary School Epilepsy

Survey

2.2.1. Participants

Participants were children in grades 4, 5, and 6 fromfive elementary schools in the Halifax Regional SchoolBoard and the Southwest District School Board in NovaScotia, Canada. Only those classrooms that had not pre-viously received the EANS grade 5 education sessionwere selected. All children in the class were invited toparticipate, and there were no exclusion criteria. Infor-mation about the study and parental consent forms weredistributed to 447 students. Written parental consent andverbal assent from students (requested before the scalewas administered) were required for study participation.Research and ethics approval was received from boththe Department of Psychology at Dalhousie Universityand the Halifax Regional and Southwest District SchoolBoards.

C. Lowe-Pearce, C.S. Camfield / Epilepsy & Behavior 7 (2005) 687–696 689

2.2.2. Sample size

Antonak and Levneh recommend that when testing theproperties of a new scale, the sample size should be fivetimes the number of items on the scale [20]. Consent formswere returned by 185 students (response rate, 41%). Ofthose who returned the forms, 20 students were not givenconsent to participate. Nine students were not presentwhen the scales were administered, and one student ofthose given consent chose not to participate. The totalnumber of students participating was 155, which accountedfor 35% of the total number of packages sent out to par-ents. The final sample size satisfies the power needed forour 22-item scale. Of the 155 students who participatedin the first administration of the scale, 139 (90%) returnedfor the second administration 1 week later. Again, theremaining sample size of 139 students for the secondadministration was more than sufficient.

2.2.3. Procedure

Administration of the ESES scale took place during theregular school day in a group setting. Full instructionsgiven to the children are provided in Appendixes A andB. In addition to the items being presented in writing onthe questionnaire, each item was read aloud by theresearcher as the students completed the questionnaire.This was to help offset any differences in reading level.

The researcher returned a week later (range, 5–13 days)to readminister the ESES scale and used the same presen-tation procedures described above. No educational inter-vention occurred within this time frame. The purpose ofthe second version was to be certain that answers remainedstable over a short time.

2.2.4. Scoring of the ESES

Scoring of the ESES was completed using a predeter-mined coding scheme consisting of a 6-point scale rangingfrom 3 to �3 or vice versa. A transparent coding sheet wasdeveloped to assist with scoring of the questionnaires.Missing data were not replaced for analyses of the ESES.On the first administration of the ESES, there were 23missing data points on the 24-item scale administered to155 children. This means that 23 of a total of 3720 datapoints (24 items · 155 children) were missing. This resultsin a percentage of missing data less than 0.01%. On the sec-ond administration of the ESES, there were 34 missing datapoints on the 25-item scale administered to 139 children,less than 0.01%.

2.2.5. Statistical analyses

Data from the completed questionnaires were analyzedusing SPSS Version 10 software (2001) to obtain informa-tion about validity and reliability of ESES, and the rela-tionship of the total and subscale scores to the child�sdemographic characteristics [21]. An a of 0.05 was usedto determine significance. Internal reliability was computedusing Cronbach�s a and an oblique rotated principal com-ponents analysis. Test–retest reliability was computed

using Pearson�s correlations. Preliminary comparisons ofscores with demographics were completed with data fromthe first administration of the ESES, using v2 and ANOVAanalyses.

3. Results

3.1. Demographics

Table 1 lists the distributions of demographic character-istics for participants by age. The mean age of the samplewas 11 years 3 months (SD ± 0.95). The numbers of stu-dents 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, 2months); and grade 6, 63 students (aged 11 years, 6 monthsto 13 years, 11 months). Fifty-three percent were male and47% were female.

On the first administration, when asked if they had everheard/read about epilepsy, 52% responded ‘‘yes’’ and 48%responded ‘‘no.’’ When asked if they knew a person withepilepsy, 23% responded ‘‘yes’’ and 77% responded ‘‘no.’’On the second administration, when asked the same ques-tions, the students responded with similar frequencies.When asked if they had had discussed epilepsy with anadult between administrations, 9% responded ‘‘yes’’ and91% 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 first ESESadministration and 0.83 for the second. These reliabilitiesexceeded the standard criterion of 0.70 for adequate reli-ability. However, the corrected item–total correlationsvaried, ranging from 0.06 to 0.56 for the firstadministration and from 0.00 to 0.68 for the secondadministration. The lower correlations suggest that eachitem is fairly independent of the total score. Analysesalso showed that the overall Cronbach a remained thesame when any one of the 22 items was removed(0.69–0.73 for the first administration and 0.80–0.83 forthe second administration). This further indicates thateach item does not add unique information to the totalscore (Table 2).

The ESES Attitudes subscale showed good internal con-sistency. Cronbach�s a was 0.81 for the first ESES adminis-tration and 0.84 for the second. However, the correcteditem–total correlations varied, ranging from 0.09 to 0.70for the first administration and from 0.10 to 0.70 for thesecond administration. Items with higher corrected item–total correlations were not always consistent from the firstadministration to the second. The lower correlations sug-gest that each item is fairly independent of the total score.Analyses showed that the overall Cronbach a remainedabout the same when any one of the 10 items was removed

Table 1Distributions of demographic characteristics for participants by age

Age (years)

9 10 11 12 13(n = 14) (n = 51) (n = 43) (n = 46) (n = 1)

Grade4 (n = 56) 14 42 — — —5 (n = 36) — 9 26 1 —6 (n = 63) — — 17 45 1

SexMale (n = 82) 8 29 25 20Female (n = 73) 6 22 18 26 1

Heard about epilepsy (T1)?Yes (n = 81) 4 16 22 39 —No (n = 74) 10 35 21 7 1

Know someone with epilepsy (T1)?Yes (n = 35) 1 5 7 22 —No (n = 120) 13 46 36 24 1

Talked with an adult between sessions (T2)?Yes (n = 12) 1 6 4 1 —No (n = 119) 9 39 29 41 1

Table 2Total scale: Corrected item–total correlations and Cronbach�s a

Item First administrationa Second administrationb

Corrected item–totalcorrelation

a if Itemdeleted


a if Itemdeleted

1 0.08 0.73 0.24 0.822 0.06 0.73 0.05 0.833 0.09 0.73 0.00 0.834 0.09 0.73 0.23 0.825 0.16 0.72 0.18 0.836 0.27 0.71 0.44 0.817 0.26 0.71 0.13 0.838 0.38 0.70 0.38 0.829 0.28 0.71 0.48 0.8110 0.25 0.71 0.38 0.8211 0.31 0.71 0.41 0.8112 0.16 0.72 0.43 0.8213 0.45 0.70 0.56 0.8114 0.48 0.70 0.54 0.8115 0.56 0.69 0.68 0.8016 0.48 0.70 0.57 0.8117 0.13 0.72 0.18 0.8318 0.46 0.70 0.66 0.8019 0.30 0.71 0.58 0.8120 0.42 0.70 0.62 0.8121 0.31 0.71 0.16 0.8322 0.44 0.70 0.66 0.81

a Overall Cronbach�s a = 0.72.b Overall Cronbach�s a = 0.83.

Table 3Attitudes subscale: Corrected item–total correlations and Cronbach�s a



a if Itemdeleted


a if Itemdeleted

13 0.59 0.77 0.60 0.8114 0.65 0.76 0.63 0.8115 0.63 0.76 0.67 0.8016 0.70 0.75 0.65 0.8017 0.09 0.83 0.12 0.8618 0.55 0.77 0.65 0.8019 0.36 0.79 0.60 0.8120 0.48 0.78 0.64 0.8121 0.24 0.81 0.10 0.8622 0.61 0.77 0.70 0.80



(0.76–0.83 for the first administration and 0.80–0.86 for thesecond administration) (Table 3).

The ESES Knowledge subscale was found to have lowinternal reliability. Cronbach�s a was 0.50 for the first ESESadministration and 0.56 for the second, indicating ratherpoor internal consistency on this scale. The corrected

item–total correlations were also low, ranging from �0.07to 0.30 for the first administration and from 0.00 to 0.41for the second administration. The lower correlations sug-gest that each item is fairly independent of the total score.Analyses also showed that the overall Cronbach a re-mained about the same when any one of the 12 itemswas removed (0.45–0.52 for the first administration and0.50–0.60 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 internalreliability analyses. When a PCA was conducted on thefirst administration of the scale, a total of eight factorsemerged, which accounted for 65% of the variance ofthe ESES. Results indicated that although a clear factor

Table 4Knowledge subscale: Corrected item–total correlations and Cronbach�s a



a if Itemdeleted


a if Itemdeleted

1 0.20 0.49 0.28 0.532 0.07 0.52 �0.07 0.603 0.09 0.51 0.00 0.594 0.16 0.50 0.16 0.565 0.19 0.49 0.23 0.546 0.25 0.47 0.41 0.507 0.30 0.45 0.23 0.548 0.29 0.46 0.34 0.519 0.11 0.50 0.36 0.5210 0.24 0.48 0.28 0.5311 0.30 0.45 0.34 0.5112 0.13 0.50 0.21 0.55


Table 5Factor analysis yielding eight components accounting for 65% of thevariance

Item Oblimin rotated component loadingsa

1 2 3 4 5 6 7 8

1 — — — — —0.18 0.17 0.76 0.14 0.21

2 0.11 0.77 0.873 0.16 0.29 —

0.114 — 0.10 0.78 — — 0.13

0.11 0.12 0.185 0.15 — — 0.17 0.20 —

0.29 0.76 0.136 0.46 0.23 — 0.40 —

0.21 0.387 0.36 0.23 — — 0.21 0.28

0.37 0.168 0.32 0.23 0.11 — 0.34 0.21

0.259 0.29 — 0.42 — —

0.40 0.17 0.1210 — 0.76 — —

0.21 0.10 0.4011 0.21 0.29 — 0.60 —

0.20 0.1512 0.14 0.71 0.2313 0.50 — — —

0.18 0.44 0.2614 0.77 — — 0.19

0.13 0.1715 0.70 0.28 — 0.10

0.1316 0.68 — — —

0.16 0.34 0.1317 0.84 0.19 —

0.1318 0.46 0.21 0.24 — —

0.23 0.2619 0.58 — 0.20 0.24

0.1320 0.78 — 0.21 0.11

0.2621 — 0.17 —

0.15 0.81

22 0.82 — — 0.15

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


emerged for the attitude-based items, the knowledge-based items did not cluster (Table 5). One factor con-tained most of the attitude items, while the knowledgeitems were scattered among the remaining seven compo-nents. When fewer factors were forced, the patterns didnot improve.

3.2.3. Reliability analyses

Results indicated significant test–retest reliabilities onthe ESES Total score (r = 0.71), Knowledge and Attitudessubscale scores (r = 0.66 and r = 0.65, respectively), andindividual item scores (r = 0.18–0.59) (Table 6).

3.3. Scores by demographic characteristics

Interestingly, developmental trends could be seen inthe response patterns of participating children. We com-pared the children�s responses on the first administrationof the scale across age ranges. Analyses across gradelevels are not reported because the overlap of ages ineach grade level makes the developmental trends lessclear.

3.3.1. Experience with epilepsy

The number of children who had heard/read about epi-lepsy significantly increased with age, v2(4, N = 155) =32.69, P < 0.05. With each age level, the number ofchildren who had heard/read about epilepsy increased(Table 1).

The number of children who knew someone with epilep-sy also significantly increased with age, v2(4, N = 155) =24.71, P < 0.05. With each age level, more children knewsomeone with epilepsy, with a large increase between 11and 12 years of age.

3.3.2. ESES scores by age

There was a significant increase in ESES total score (inthe positive direction) with age, F(4, 138) = 4.13,

P < 0.05. There was also a significant increase in ESESKnowledge subscale (in the positive direction) with age,F(4, 143) = 2.84, P < 0.05 and in the ESES Attitudes sub-scale (in the positive direction) with age, F(4, 147) = 4.17,P < 0.05.

3.3.3. ESES scores by sex

Females scored significantly better than males, as indi-cated 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.

Table 6Test–retest reliabilities for ESES items and scales

Item Test–retest reliability (r)

1 0.56a

2 0.32a

3 0.44a

4 0.57a

5 0.45a

6 0.51a

7 0.59a

8 0.51a

9 0.18b

10 0.35a

11 0.51a

12 0.52a

13 0.45a

14 0.40a

15 0.52a

16 0.51a

17 0.49a

18 0.56a

19 0.32a

20 0.43a

21 0.46a

22 0.43a

Knowledge scale (Items 1–12) 0.66a

Attitudes scale (Items 13–22) 0.65a

Total scale 0.71a

a Correlation is significant at the 0.01 level (two-tailed).b Correlation is significant at the 0.05 level (two-tailed).


3.3.4. Discriminant validity

There was no significant difference in the ESES Knowl-edge subscale score between those who had heard/readabout epilepsy and those who had not, F(1, 143) = 1.18,P = 2.79. However, a significant difference was found inthe ESES Attitudes subscale score between those whohad heard/read about epilepsy and those who had not, withthose who had heard/read about epilepsy scoring better onthis subscale, F(1, 147) = 20.72, P < 0.05. Because of this,the ESES total score was significantly better among chil-dren who had heard or read about epilepsy, as comparedwith those who had not (F(1, 138) = 10.76, P < 0.05).

Significant increases were also noted in ESES Total,Knowledge subscale, and Attitudes subscale scores in thosewho knew someone with epilepsy, with those who knewsomeone 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 22-item ESES can be used in the classrooms of grades 4, 5,and 6 to evaluate an epilepsy teaching program and its im-pact on knowledge and attitudes toward epilepsy. Thisshould help school administrators to rationalize the timeused within the elementary school curriculum to teachabout childhood illness. However, programs such as that

taught by the education coordinator of the Epilepsy Asso-ciation of Nova Scotia now need to document the impactof the teaching intervention.

It is important to note that the internal consistency ofthe ESES reliabilities varies. Internal reliabilities are stron-ger for the Total score and Attitudes subscale than for theKnowledge subscale. The PCA revealed that, as expected,most of the predetermined attitude items grouped ontoone factor that accounted for 20% of the variance. Excep-tions were Items 17 and 21. Interestingly, children in all agegroups answered Item 17 in the direction opposite thanexpected, indicating that the question either was not under-stood or was interpreted differently than intended. Thequestion read, ‘‘I think people with epilepsy need to be pro-tected more than other people.’’ Most children stronglyagreed with this question. If the children were to answerthis question similarly to the other attitude questions(i.e., assuming children with epilepsy are just like youand me), they should have disagreed with this item. As thisquestion was not answered as expected, it should be re-moved or reworded in another version of this scale.Although children answered Item 21 in the directionexpected, it did not group with the other attitude questions.Therefore, in future versions, it should not be part of theAttitudes subscale.

Unlike the Attitudes subscale, the predetermined knowl-edge items did not group together in a clear pattern, butformed seven other factors that accounted for only 44%of the remaining variance. One explanation for the unclearpatterns in the Knowledge subscale is that the questionswere very broad, and did not tap any one specific area ofknowledge about epilepsy. Although many participantshad heard of epilepsy before, and may even have had expe-rience with epilepsy, the scale seemed to tap into differentpockets of participant knowledge, which probably variedbetween the children. Item refinement on the next versionof the scale should address this issue.

In addition, this preliminary version of the ESES is ableto detect developmental trends in students� knowledgeabout epilepsy. Also, it is sensitive to differences in theknowledge and attitudes of students who have had previ-ous experience with epilepsy versus those who have not.This allows one to predict that a more refined version ofthe tool will be suitable as an evaluation tool, for assessingthe attitudes and knowledge of elementary school students,as well as changes that might occur as a result of an epilep-sy-specific education program. Continued refinement of theESES is important, as no such measure currently exists foruse with elementary school students.

The ESES scale will ultimately be used by our provincialepilepsy association to assess children�s knowledge andattitudes about epilepsy and persons with epilepsy, and asan evaluation tool to assess the effectiveness of the existinggrade 5 education program. As no other scale exists at thistime, it is hoped that the ESES scale will have a broadapplicability and usefulness for other epilepsy associationsin Canada and internationally.


Appendix A

ESES Form 1

Name: ___________________________Today�s 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 different 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 thehospital when they have a seizure.

9. I think we should put something in a person�s mouthwhen they are having a seizure.

10. I think we should try to wake up a person withepilepsy 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 otherstudents 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


17. I think people with epilepsy need to be protectedmore 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:___________________________ Today�s 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 different 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


8. I think people with epilepsy always need to go to the hospitalwhen they have a seizure.

9. I think we should put something in a person�s mouth whenthey are having a seizure.

10. I think we should try to wake up a person with epilepsywhen 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 otherstudents 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 protectedmore 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 inadults with epilepsy: comparison findings from four countries.Epilepsy 1984;25:176–83.

[2] Cadman D, Boyle M, Szatmari P, et al. Chronic illness, disability,and mental and social well-being: findings of the Ontario child healthstudy. Pediatrics 1987;79:805–13.

[3] Camfield C, Camfield P, Smith B, et al. Biologic factors aspredictors of social outcome of epilepsy in intellectuallynormal children: a population-based study. J Pediatr 1993;122:869–73.

[4] Levin R, Banks S, Berg B. Psychosocial dimensions of epilepsy: areview of the literature. Epilepsia 1998;29:605–16.

[5] Austin JK, MacLeod J, Dunn DW, et al. Measuring stigma inchildren with epilepsy and their parents: instrument development andtesting. Epilepsy Behav 2004;5:472–82.

[6] Jacoby A, Snape D, Baker GA. Epilepsy and social identity: thestigma of a chronic neurological disorder. Lancet Neurol2005;4:171–8.

[7] Sillanpaa M, Haataja L, Shinnar S. Perceived impact of childhood-onset epilepsy on quality of life as an adult. Epilepsia 2004;45:971–7.

[8] LaGreca AM. Social consequences of pediatric conditions: fertilearea for future investigation and intervention? J Pediatr Psychol1990;15:285–307.

[9] Eagly AH, Chaiken S. Attitude structure and function. In: GilbertDT, Fiske ST, editors. Handbook of social psychology, 4th ed., Vol.1. New York: McGraw–Hill; 1998. p. 269–322.


[10] Brehm S, Kassin S, Fein S. Social psychology. 5th ed. Lon-don: Houghton–Mifflin; 2002. ch. 6.

[11] Sears DO, Abeles RP. Attitudes and opinions. Annu Rev Psychol1969;20:253–88.

[12] Gordon N, Sillanpaa M. Epilepsy and prejudice with particularrelevance to childhood. Dev Med Child Neurol 1997;39:777–81.

[13] Katz A. The science of quality of life. J Chron Disabil1987;40:459–63.

[14] Long L, Reeves A, Moore JL, et al. An assessment ofepilepsy patients� knowledge of their disorder. Epilepsia2000;41:727–31.

[15] Gouvier WD, Brown LM, Prestholdt PH, et al. A survey ofcommon misconceptions about epilepsy. Rehabil Psychol1995;40:51–9.

[16] Antonak RF, Rankin PR. Measurement and analysis of knowledgeand attitudes toward epilepsy and persons with epilepsy. Social SciMed 1982;16:1591–3.

[17] Gajjar M, Geva E, Humphries T, et al. A new scale to assess culture-specific beliefs and attitudes about epilepsy. Epilepsy Behav2000;1:235–55.

[18] Young GB, Derry P, Hutchinson I, et al. An epilepsy questionnairestudy of knowledge and attitudes in Canadian college students.Epilepsia 2002;43:652–8.

[19] The Epilepsy Foundation National Teen Survey on Epilepsy: reportof findings. Epilepsy Foundation of America; 2001.

[20] Antonak RF, Livneh H. The measurement of attitudes toward peoplewith disabilities: methods, psychometrics and scales. Springfield,IL: Charles C Thomas; 1988.

[21] SPSS Version 10 [Computer Software]. 2001. Chicago, IL.

Documents

Elementary school epilepsy survey (ESES): A new measure of elementary school students’ knowledge and attitudes about epilepsy