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Elementary school epilepsy survey (ESES): A new measure of elementary school students’ knowledge and attitudes about epilepsy
Epilepsy & Behavior 7 (2005) 687–696 www.elsevier.com/locate/yebeh
Elementary school epilepsy survey (ESES): A new measure of elementary school studentsÕ 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 2005 Available online 2 November 2005
Abstract Objective. No peer-reviewed, published, psychometrically tested scales are available to assess elementary school studentsÕ general knowledge 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 studentsÕ 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 9.8–13.9): grade 4, 56 students; grade 5, 36; and grade 6, 63 students. The ESES Total scale and Attitudes subscale had good internal consistency (CronbachÕs a = 0.72 and 0.81, respectively). As expected, the Knowledge subscale had low internal reliability (CronbachÕs a = 0.50). Test–retest scores indicated good reliability and strong discriminant 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 studentsÕ knowledge and attitude about epilepsy. It has good internal 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 been associated with psychological difficulties and perceived poorer quality of life, and has implications for social adjustment in childhood [1–5]. Epilepsy is both a medical disorder and a ‘‘social label’’ in which the psychosocial aspects frequently cause greater difficulties than the physical symptoms of the disease itself [6]. Previously, childrenÕs psychosocial difficulties were attributed primarily to epilepsy-associated biological factors. More recently, social factors including stigmatization, exclusion from social activities, and prejudice are also felt to influence social *
Corresponding author. Fax: +1 902 470 7913. E-mail address: Camfi[email protected] (C.S. Camfield).
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 difficulties within their social network. Early negative influences 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 influencing 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 affective 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).
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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 specific 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 affiliation. Beyond this critical period, attitudes remain relatively stable, apart from a central conservative drift. Education is a significant method to influence the attitudes and behaviors of individuals. Changing how society views and behaves toward those with epilepsy may result in decreased psychosocial difficulties, and early education of children could produce a strong effect of interaction with their peers on the childÕs 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 specific to the assessment of knowledge and attitudes about epilepsy do exist for adult populations [14–18], 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 respondentsÕ ‘‘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 studentsÕ 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 10–12 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 offered through the Epilepsy Association of Nova Scotia were specifically selected, although several items
were adapted from items on existing measures with slight wording changes to reflect appropriate language for a younger age range [19,20]. The ESES is a 22-item scale that reflects language and content suitable for children aged 10–12 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 test–rest reliability, we also developed a second version of the survey. The second version is identical to the first, but also asks if the child read about or talked about epilepsy with an adult since the first 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 different-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, first aid, and safety); (2) Attitude Subscale of 10 items that assess attitude toward people with epilepsy (e.g., attributes associated with having epilepsy, effects of having epilepsy on self and othersÕ 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 five 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.
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2.2.2. Sample size Antonak and Levneh recommend that when testing the properties of a new scale, the sample size should be five 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 final sample size satisfies the power needed for our 22-item scale. Of the 155 students who participated in the first 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 sufficient. 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 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 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 first 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 childÕs demographic characteristics [21]. An a of 0.05 was used to determine significance. Internal reliability was computed using CronbachÕs a and an oblique rotated principal components analysis. Test–retest reliability was computed
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using PearsonÕs correlations. Preliminary comparisons of scores with demographics were completed with data from the first 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 first 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 first ESES administration and 0.83 for the second. These reliabilities exceeded the standard criterion of 0.70 for adequate reliability. However, the corrected item–total correlations varied, ranging from 0.06 to 0.56 for the first 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 (0.69–0.73 for the first administration and 0.80–0.83 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. CronbachÕs a was 0.81 for the first ESES administration and 0.84 for the second. However, the corrected item–total correlations varied, ranging from 0.09 to 0.70 for the first 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 first 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
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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
— — 1
8 6
29 22
25 18
20 26
1
Heard about epilepsy (T1)? Yes (n = 81) No (n = 74)
4 10
16 35
22 21
39 7
— 1
Know someone with epilepsy (T1)? Yes (n = 35) No (n = 120)
1 13
5 46
7 36
22 24
— 1
1 9
6 39
4 29
1 41
— 1
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 item–total correlations and CronbachÕs 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 item–total correlations and CronbachÕs a
Second administrationb
Corrected item–total correlation
a if Item deleted
Corrected item–total 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 CronbachÕs a = 0.72. Overall CronbachÕs a = 0.83.
(0.76–0.83 for the first administration and 0.80–0.86 for the second administration) (Table 3). The ESES Knowledge subscale was found to have low internal reliability. CronbachÕs a was 0.50 for the first 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 item–total correlation
a if Item deleted
Corrected item–total 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 CronbachÕs a = 0.80. Overall CronbachÕs a = 0.83.
item–total correlations were also low, ranging from 0.07 to 0.30 for the first 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 (0.45–0.52 for the first administration and 0.50–0.60 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 internal reliability analyses. When a PCA was conducted on the first 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. Camfield / Epilepsy & Behavior 7 (2005) 687–696 Table 4 Knowledge subscale: Corrected item–total correlations and CronbachÕs a Item
1 2 3 4 5 6 7 8 9 10 11 12 a b
First administrationa
Second administrationb
Corrected item–total 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 item–total 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 CronbachÕs a = 0.51. Overall CronbachÕs 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 significant test–retest 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 = 0.18–0.59) (Table 6). 3.3. Scores by demographic characteristics Interestingly, developmental trends could be seen in the response patterns of participating children. We compared the childrenÕs responses on the first 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 significantly 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 significantly 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 significant increase in ESES total score (in the positive direction) with age, F(4, 138) = 4.13,
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Table 5 Factor analysis yielding eight components accounting for 65% of the variance Item
1 2 3 4 5
Oblimin rotated component loadingsa 1
2
— 0.18 0.11
— 0.17
3
5
— 0.76
— 0.14 0.16
— 0.11 0.15
6
0.46
— 0.29 0.23
7
0.36
0.23
8
0.32
0.23
0.11
9
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
8
— 0.21
— 0.17
— 0.23 0.24 0.21
— 0.15 —
7
0.40
— 0.13
0.84
0.82
6
— 0.16
18
22
4
0.17 —
— 0.44 — 0.17
— 0.26 0.19
— 0.34 — 0.13 — 0.26
— 0.13
0.11 — 0.81 0.15
a
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 significant 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 significantly 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.
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Table 6 Test–retest reliabilities for ESES items and scales Item
Test–retest 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 1–12) Attitudes scale (Items 13–22) Total scale
0.66a 0.65a 0.71a
a b
Correlation is significant at the 0.01 level (two-tailed). Correlation is significant at the 0.05 level (two-tailed).
3.3.4. Discriminant validity There was no significant difference 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 significant difference 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 significantly 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). Significant 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 differently 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 specific 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 different pockets of participant knowledge, which probably varied between the children. Item refinement 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 studentsÕ knowledge about epilepsy. Also, it is sensitive to differences 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 refined 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-specific education program. Continued refinement 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 childrenÕs knowledge and attitudes about epilepsy and persons with epilepsy, and as an evaluation tool to assess the effectiveness 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.
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Appendix A ESES Form 1 Name: ___________________________TodayÕs 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 the hospital when they have a seizure. 9. I think we should put something in a personÕs 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
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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:___________________________ TodayÕs 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
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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 personÕs 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.
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[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;5:472–82. [6] Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol 2005;4:171–8. [7] Sillanpaa M, Haataja L, Shinnar S. Perceived impact of childhoodonset epilepsy on quality of life as an adult. Epilepsia 2004;45:971–7. [8] LaGreca AM. Social consequences of pediatric conditions: fertile area for future investigation and intervention? J Pediatr Psychol 1990;15:285–307. [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: McGraw–Hill; 1998. p. 269–322.
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[10] Brehm S, Kassin S, Fein S. Social psychology. 5th ed. London: Houghton–Mifflin; 2002. ch. 6. [11] Sears DO, Abeles RP. Attitudes and opinions. Annu Rev Psychol 1969;20:253–88. [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;40:459–63. [14] Long L, Reeves A, Moore JL, et al. An assessment of epilepsy patientsÕ knowledge of their disorder. Epilepsia 2000;41:727–31. [15] Gouvier WD, Brown LM, Prestholdt PH, et al. A survey of common misconceptions about epilepsy. Rehabil Psychol 1995;40:51–9.
[16] Antonak RF, Rankin PR. Measurement and analysis of knowledge and attitudes toward epilepsy and persons with epilepsy. Social Sci Med 1982;16:1591–3. [17] Gajjar M, Geva E, Humphries T, et al. A new scale to assess culturespecific beliefs and attitudes about epilepsy. Epilepsy Behav 2000;1:235–55. [18] Young GB, Derry P, Hutchinson I, et al. An epilepsy questionnaire study of knowledge and attitudes in Canadian college students. Epilepsia 2002;43:652–8. [19] The Epilepsy Foundation National Teen Survey on Epilepsy: report of findings. Epilepsy Foundation of America; 2001. [20] Antonak RF, Livneh H. The measurement of attitudes toward people with disabilities: methods, psychometrics and scales. Springfield, IL: Charles C Thomas; 1988. [21] SPSS Version 10 [Computer Software]. 2001. Chicago, IL.
Elementary school epilepsy survey (ESES): A new measure of elementary school studentsÕ 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 2005 Available online 2 November 2005
Abstract Objective. No peer-reviewed, published, psychometrically tested scales are available to assess elementary school studentsÕ general knowledge 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 studentsÕ 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 9.8–13.9): grade 4, 56 students; grade 5, 36; and grade 6, 63 students. The ESES Total scale and Attitudes subscale had good internal consistency (CronbachÕs a = 0.72 and 0.81, respectively). As expected, the Knowledge subscale had low internal reliability (CronbachÕs a = 0.50). Test–retest scores indicated good reliability and strong discriminant 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 studentsÕ knowledge and attitude about epilepsy. It has good internal 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 been associated with psychological difficulties and perceived poorer quality of life, and has implications for social adjustment in childhood [1–5]. Epilepsy is both a medical disorder and a ‘‘social label’’ in which the psychosocial aspects frequently cause greater difficulties than the physical symptoms of the disease itself [6]. Previously, childrenÕs psychosocial difficulties were attributed primarily to epilepsy-associated biological factors. More recently, social factors including stigmatization, exclusion from social activities, and prejudice are also felt to influence social *
Corresponding author. Fax: +1 902 470 7913. E-mail address: Camfi[email protected] (C.S. Camfield).
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 difficulties within their social network. Early negative influences 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 influencing 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 affective 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).
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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 specific 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 affiliation. Beyond this critical period, attitudes remain relatively stable, apart from a central conservative drift. Education is a significant method to influence the attitudes and behaviors of individuals. Changing how society views and behaves toward those with epilepsy may result in decreased psychosocial difficulties, and early education of children could produce a strong effect of interaction with their peers on the childÕs 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 specific to the assessment of knowledge and attitudes about epilepsy do exist for adult populations [14–18], 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 respondentsÕ ‘‘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 studentsÕ 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 10–12 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 offered through the Epilepsy Association of Nova Scotia were specifically selected, although several items
were adapted from items on existing measures with slight wording changes to reflect appropriate language for a younger age range [19,20]. The ESES is a 22-item scale that reflects language and content suitable for children aged 10–12 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 test–rest reliability, we also developed a second version of the survey. The second version is identical to the first, but also asks if the child read about or talked about epilepsy with an adult since the first 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 different-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, first aid, and safety); (2) Attitude Subscale of 10 items that assess attitude toward people with epilepsy (e.g., attributes associated with having epilepsy, effects of having epilepsy on self and othersÕ 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 five 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.
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2.2.2. Sample size Antonak and Levneh recommend that when testing the properties of a new scale, the sample size should be five 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 final sample size satisfies the power needed for our 22-item scale. Of the 155 students who participated in the first 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 sufficient. 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 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 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 first 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 childÕs demographic characteristics [21]. An a of 0.05 was used to determine significance. Internal reliability was computed using CronbachÕs a and an oblique rotated principal components analysis. Test–retest reliability was computed
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using PearsonÕs correlations. Preliminary comparisons of scores with demographics were completed with data from the first 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 first 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 first ESES administration and 0.83 for the second. These reliabilities exceeded the standard criterion of 0.70 for adequate reliability. However, the corrected item–total correlations varied, ranging from 0.06 to 0.56 for the first 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 (0.69–0.73 for the first administration and 0.80–0.83 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. CronbachÕs a was 0.81 for the first ESES administration and 0.84 for the second. However, the corrected item–total correlations varied, ranging from 0.09 to 0.70 for the first 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 first 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
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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
— — 1
8 6
29 22
25 18
20 26
1
Heard about epilepsy (T1)? Yes (n = 81) No (n = 74)
4 10
16 35
22 21
39 7
— 1
Know someone with epilepsy (T1)? Yes (n = 35) No (n = 120)
1 13
5 46
7 36
22 24
— 1
1 9
6 39
4 29
1 41
— 1
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 item–total correlations and CronbachÕs 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 item–total correlations and CronbachÕs a
Second administrationb
Corrected item–total correlation
a if Item deleted
Corrected item–total 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 CronbachÕs a = 0.72. Overall CronbachÕs a = 0.83.
(0.76–0.83 for the first administration and 0.80–0.86 for the second administration) (Table 3). The ESES Knowledge subscale was found to have low internal reliability. CronbachÕs a was 0.50 for the first 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 item–total correlation
a if Item deleted
Corrected item–total 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 CronbachÕs a = 0.80. Overall CronbachÕs a = 0.83.
item–total correlations were also low, ranging from 0.07 to 0.30 for the first 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 (0.45–0.52 for the first administration and 0.50–0.60 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 internal reliability analyses. When a PCA was conducted on the first 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. Camfield / Epilepsy & Behavior 7 (2005) 687–696 Table 4 Knowledge subscale: Corrected item–total correlations and CronbachÕs a Item
1 2 3 4 5 6 7 8 9 10 11 12 a b
First administrationa
Second administrationb
Corrected item–total 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 item–total 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 CronbachÕs a = 0.51. Overall CronbachÕs 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 significant test–retest 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 = 0.18–0.59) (Table 6). 3.3. Scores by demographic characteristics Interestingly, developmental trends could be seen in the response patterns of participating children. We compared the childrenÕs responses on the first 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 significantly 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 significantly 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 significant increase in ESES total score (in the positive direction) with age, F(4, 138) = 4.13,
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Table 5 Factor analysis yielding eight components accounting for 65% of the variance Item
1 2 3 4 5
Oblimin rotated component loadingsa 1
2
— 0.18 0.11
— 0.17
3
5
— 0.76
— 0.14 0.16
— 0.11 0.15
6
0.46
— 0.29 0.23
7
0.36
0.23
8
0.32
0.23
0.11
9
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
8
— 0.21
— 0.17
— 0.23 0.24 0.21
— 0.15 —
7
0.40
— 0.13
0.84
0.82
6
— 0.16
18
22
4
0.17 —
— 0.44 — 0.17
— 0.26 0.19
— 0.34 — 0.13 — 0.26
— 0.13
0.11 — 0.81 0.15
a
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 significant 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 significantly 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.
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Table 6 Test–retest reliabilities for ESES items and scales Item
Test–retest 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 1–12) Attitudes scale (Items 13–22) Total scale
0.66a 0.65a 0.71a
a b
Correlation is significant at the 0.01 level (two-tailed). Correlation is significant at the 0.05 level (two-tailed).
3.3.4. Discriminant validity There was no significant difference 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 significant difference 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 significantly 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). Significant 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 differently 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 specific 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 different pockets of participant knowledge, which probably varied between the children. Item refinement 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 studentsÕ knowledge about epilepsy. Also, it is sensitive to differences 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 refined 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-specific education program. Continued refinement 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 childrenÕs knowledge and attitudes about epilepsy and persons with epilepsy, and as an evaluation tool to assess the effectiveness 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.
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Appendix A ESES Form 1 Name: ___________________________TodayÕs 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 the hospital when they have a seizure. 9. I think we should put something in a personÕs 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
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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:___________________________ TodayÕs 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.
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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 personÕs 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 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 health study. Pediatrics 1987;79:805–13. [3] Camfield C, Camfield 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: 869–73. [4] Levin R, Banks S, Berg B. Psychosocial dimensions of epilepsy: a review of the literature. Epilepsia 1998;29:605–16.
[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;5:472–82. [6] Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol 2005;4:171–8. [7] Sillanpaa M, Haataja L, Shinnar S. Perceived impact of childhoodonset epilepsy on quality of life as an adult. Epilepsia 2004;45:971–7. [8] LaGreca AM. Social consequences of pediatric conditions: fertile area for future investigation and intervention? J Pediatr Psychol 1990;15:285–307. [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: McGraw–Hill; 1998. p. 269–322.
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