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Camp Experiences and Attitudes Toward Epilepsy: A Pilot Study.

Abstract: Most healthcare providers report anecdotally that a camping experience helps children and adolescents with chronic health conditions to develop more positive attitudes toward their condition. However, children's and adolescents' perceptions have rarely been studied systematically. This pilot study of 20 campers with epilepsy who were 8-16 years of age was undertaken to examine the effect of a camp experience on their attitudes toward epilepsy. Attitudes, measured by the 13-item Child Attitude Toward Illness Scale (CATIS), were assessed before and after the camp experience. No pretest or posttest difference in attitude toward epilepsy was found in the total group. However, when attitudes were examined by seizure frequency, there was a trend for those with more frequent seizures to report a more positive attitude after the camp experience. Issues in evaluating camp experiences for youth with chronic conditions are reviewed, and recommendations are made for a comprehensive camp evaluation. Nurses are encouraged to assist families whose child is challenged by more frequent seizures to consider a camp experience.

Many types of camp experiences for children with chronic conditions have been developed over the last 10 years. These experiences have been created, usually by healthcare providers and interested parents or mentors, for a variety of reasons. The unifying purpose for most camps, however, is to give the camper with a chronic condition a chance to play and to be a "regular kid." Some camps also seek to teach needed self-care skills in a pleasant environment. Anecdotally, most healthcare providers report that a camping experience seems to help children and adolescents with chronic conditions to develop more positive attitudes about their condition. This latter outcome is important because research on adaptation to chronic conditions has found that these youths have an increased incidence of psychosocial problems.[8,22,26] Even though these children's and adolescents' perceptions are theorized to influence both their own and their families' adaptation to the chronic condition,[15,16] the effect of camp on their perceptions has not been systematically studied. This pilot study was undertaken to examine the effect of a camp experience for youth with epilepsy on their attitudes toward their condition. Results of this pilot can be used to design a larger comprehensive study of attitudes to illness and camp experiences.

Review of Literature

Camp Orientation

Three themes are prominent in the health literature on camps for youths with chronic conditions: (a) camp as fun, (b) camp as an intervention to build self-care skills and improve health outcomes, and (c) camp as a vehicle to enhance attitudes and motivation for self-care of the condition. The majority of articles addressing these themes are clinically relevant. The goal of most authors appears to be to educate or to increase the sensitivity of healthcare providers toward a therapeutic camp as an important intervention for youth. The authors who write about camp as play stress the importance of a child being able to be a kid and play without restrictions. The authors focusing on skill building suggest that camp is a unique setting in which youth can gain needed self-care skills to manage their chronic condition. Authors addressing the theme of camp as a vehicle for enhancing attitudes and motivation view camp as an opportunity for accomplishing tasks of normal growth and development, adjusting to the condition, and gaining coping skills or developing more positive attitudes toward the condition while being supported by professionals. Recent articles serve a useful purpose by providing new ideas for healthcare professionals, including:

* The idea that camping for youths with chronic conditions or special needs (e.g., epilepsy, HIV/AIDS, end-stage renal disease, bums, diabetes, asthma, cancer, GI conditions, hemophilia, or developmental disabilities) is important and fun for children. Camp is seen as a place where children can be normal and a place where their condition does not limit their ability to fully participate in life. These authors suggest that developing camp experiences for these youth should be a priority for pediatric professionals and society in general.[9,11,14,28,32] They also propose that camp experiences paced and equipped for a child with a chronic or terminal illness offer great rewards. The benefit of this experience is reflected by a camper's comments. "Because I am a hemophiliac I have always had to be protected. Camp was the first place I could put that aside and do anything I wanted."[32]

* Descriptions of the amount and type of planning by physicians and nurses needed to develop a successful camping experience for specialized populations.[6,19,25,29]

* Descriptions of how camping can motivate teens with diabetes toward responsible self-care.[23]

* Description about how camp can be an opportunity for nurses to make a difference in a child's life by forming a "therapeutic alliance" that facilitates his or her growth and development.[13]

Evaluation of Camp Experiences

Systematic evaluation of camping experiences to determine whether the children have fun, gain skills, improve condition outcomes, or enhance their adaptation to their condition is limited. Only one study reported a systematic evaluation of an overall camp experience. Punnett and Thurber adapted the Child Evaluation Inventory (CEI) to evaluate the overall camp experience and impressions about camp.[20,21] Campers were asked to indicate on a 5-point scale, "Overall, how did you feel about camp?" "How much fun was it?" "How much did you learn?" "How interesting was camp?" and "Are you able to use what you learned to help you with your --?" The tool had an internal consistency of 0.91 for that sample. However, no study using the tool after its development was found.

The most frequent types of studies have been those evaluating skills or changes in the condition related to the camp experience. These studies have focused on managing diabetes, asthma, eating disorders, or autoimmune conditions. Two studies addressed asthma. In the first, 40 children with moderate to severe asthma demonstrated changes in peak flow meter and metered-dose inhaler skills by the end of the camp experience. Follow-up 6 months later indicated that emergency room visits, hospitalizations, and school absences had decreased, with a mean healthcare savings of $2,014 per child.[12] Camp Superteens, a pilot study of a 6-hour educational day-camp program for 17 youths, ages 13 to 16 years, held at a local shopping mall found increases in self-efficacy in both asthma skills (exercising and breathing properly) and ability to manage emotions (anger or fear).[1] In contrast, Punnett and Thurber collected data from 124 campers ages 10-23 years who attended asthma camp for 3 consecutive years to identify factors that accounted for their improvement following camp.[20] They found that girls who had more positive perceptions of their self-conduct and boys who perceived themselves as athletically competent after a camping experience did the best with their asthma.

Two studies addressed youths with diabetes. Wolanski, Sigman, and Polychronakos tested an intervention aimed at improving the accuracy and precision of blood glucose self-monitoring in a group of 71 campers with diabetes.[31] The 41 participants, who had previously been found to make testing errors, were randomized into either intervention or control groups. Intervention participants received individual assessments and group sessions that involved blood testing under supervision, correction of testing errors, and discussion of the importance of correct techniques. Only marginal changes were achieved. The authors concluded that poor glucose monitoring by participants resulted mostly from poor attitudes rather than lack of skills.

In contrast, an Italian study found that a 10-day camp experience for children 8-16 years old yielded significant improvement in both knowledge and self-management of the condition.[18] Clinic follow-up documented diabetes control improvements (i.e., the Hemoglobin Alc, a laboratory test of long-term diabetic control). The comparison group of youths not attending camp did not improve either their knowledge or skill and their diabetes control (i.e., HbA1c) worsened.

Data for other populations are sparse. For youth with arthritis, a camp experience was found to affect physical condition by improving range of motion and strength, but not functional status.[17] A summer camp experience for 59 girls, 12-17 years, with eating disorders was found to result in positive changes in eating, body image, exercise and activity level, and self-esteem. Almost all (95%) of the young women and 75% of their parents reported an effect on the underlying disease as a result of the camp experience.[27] Fewer studies have addressed changes in perceptions of a chronic condition as a result of a camping experience. In contrast to the Tonkin[27] study demonstrating changes in self-esteem in almost all-female campers with eating disorders, fewer youth with bums reported such changes.[5] The Rosenberg Self-Esteem Scale was used to examine the effect of bum-camp experience on the self-esteem of 43 campers with a history of bums from 10% to 98% total body (M = 40%) who were 4 to 144 months (M = 54 months) from their hospital discharge) The authors reported that only 37% of the campers experienced improvement in self-esteem and concluded that the study did not support a strong link between self-esteem changes and attending camp. However, no subgroup analyses by severity or time since injury was reported.

The only study that examined change in attitude toward the condition as the result of a camp experience used the Child Attitude Toward Illness Scale (CATIS)[2] and the State-Trait Anxiety Inventory for Children (STAIC).[24] Briery and Rabian studied 90 campers ages 6 to 16 years at 3 week-long camps in a Southern state.[7] Campers were attending asthma (n = 37), diabetes (n = 32), and spina bifida (n = 21) camps. Participation rates were excellent, and 91%-96% of campers were included in the study. Campers completed the instruments at registration and at the end of the camp experience. Analysis of variance was used to explore differences between groups. Campers at each of the condition-specific camps improved both their attitudes and their anxiety. For the CATIS there were no effects of gender or experience. However, new campers showed more positive attitude posttest scores overall than did returning campers. Returning campers exhibited greater levels of trait anxiety overall than did new campers. No differences were found by type of condition. No studies were found, however, that addressed the camp experience of youths with epilepsy. Therefore, the purpose of this pilot study was to explore the effect of a camp experience on attitudes toward epilepsy. The research question addressed by this study was: Is there any change in attitude toward epilepsy brought about by the camping experience?

Methods

Description of the Camp and Sample

The camp used for this pilot was located at a farm in a Southern rural state and was open without charge to children with a wide variety of chronic health conditions, those who have a sibling with a chronic health condition, or those whose parent had a serious illness. The camp offers six 1-week residential sessions, with 1 week devoted to children with epilepsy and other neurological disorders. This week of camp usually has 35-40 campers from 6 to 16 years of age. There are usually an equal number of males and females. Campers are limited to those with no additional severe medical, cognitive, or behavioral conditions, although seizure frequency does not affect camp eligibility. Camp counseling staff is at a one-to-one ratio, and healthcare staff consists of a variety of volunteers (nurses, pediatric neurologists, neurologists, and pediatric residents). At least one nurse and one physician are at the camp at all times. Children are accommodated in one of eight cabins divided by gender and age. A counselor is physically present in the cabin at all times. Healthcare staff members are housed in another building where the children come for their daffy medications and first aid if needed.

Most campers are not allowed to register for traditional summer camps because of their seizures. The purpose of this camp is to give a recreational experience to children who might not otherwise have had this opportunity and to provide an opportunity for them to meet other children who share their diagnosis. The overall goal is to allow "kids to be kids." The campers are encouraged to take chances and try new things. There is no special formal epilepsy education provided during camp week other than to remind the children of the name of their medication when they come in for medication. However, informal discussions with staff members occur throughout the week.

Children were invited to participate in the study if they had a diagnosis of epilepsy, were being treated with an antiepileptic drug, and were able to read or to understand the items read to them. Demographic data are listed in Table 1. A total of 20 children and adolescents, ages 8-16, completed both phases of the data collection.
Table 1. Characteristics of the Sample

 Standard
 Mean Deviation Range

Age 12.6 2.4 8-16
Onset, years 3.4 3.5 0-11

 Number Percentage
Gender
 Female 8 40
 Male 12 60
Race
 African American 1 5
 Caucasian 18 90
 Missing 1 5
Seizure type(*)
 General tonic clonic 3 15
 Absence 1 5
 Complex partial 14 75
 Absence/GTC 2 10
Seizure frequency
 Daily or more 4 20
 Weekly 3 15
 6 a year or less 6 30
 None 7 35
Years at camp
 First 5 25
 Second 6 30
 Third 3 15
 Fourth 4 20
 Fifth 2 10

(*) Two campers had two types of seizure.


Instrumentation

The CATIS tool, developed by Austin and Huberty,[2] was used to measure child attitudes. The scale was initially used to evaluate 269 children ages 8-12 years with either epilepsy or asthma. The 13-item instrument was designed so that the type of condition could be inserted into some items. The scale items address different components of attitude such as: "How often do you feel bad because you have --?" "How often to you feel sad about being sick?" "How often do you feel that your -- is your fault?" and "How often do you feel that your -- keeps you from starting new things?" Ratings are on a 5-point scale. The scale score is obtained by reversing the eight negatively worded items, summing items, and dividing the total by 13. The higher the scale mean score (i.e., the closer to 5.0), the more positive the child's attitude toward the illness. The initial internal consistency reliability of the tool in several samples ranged from 0.77 to 0.82, and test-retest alpha at 2 weeks was 0.80.[2] Factor analysis and predictive relationships with behavior problems and self-concept provided support for construct validity of the scale. Data from two samples of adolescents with epilepsy supported that the CATIS is a useful and psychometrically sound tool to assess adolescents' attitudes toward having a chronic illness.[3,10] Since the original instrument was developed, it has been used to evaluate the effect of camp on the attitudes of 90 youth attending diabetes, asthma, and spina bifida camps. Although these authors[7] did not report reliability data on their populations, they found more positive attitudes as a result of camp, which provided further support for the validity of the scale. Internal consistency reliability in the current study was 0.83 at Tune 1 (pretest) and 0.82 at Tune 2 (posttest).

Procedure

Participant approval was obtained for the project. Parents were asked to consent to the study for their minor child and the child or adolescent was asked to assent. No participant was enrolled in the study without the permission of both a parent and the child. A list of the 37 registered campers was obtained several weeks before camp, and all 25 families with children who qualified for the study were invited by mail to participate. The 14 campers not enrolled in the study either did not meet the seizure inclusion criteria (n = 2), had cognitive problems (n = 10), or declined to participate (n = 2). Families were asked to have the child answer the questions prior to coming to the camp based on his or her opinion even if the parent had to read the questions to the child.

A total of 23 questionnaires and consent/assent forms was turned in on the first day of camp (Time 1). Medical records that accompanied the child to camp were used as a source of demographic information. On the last day of camp, each camper who completed the first questionnaire was given the second questionnaire to take home and return in 4 weeks (Time 2). A letter was sent at 2 weeks after the conclusion of camp reminding campers and their families to return the scheduled questionnaire, and an additional reminder was sent to the 10 participants who had not returned the questionnaire at 4 weeks. Complete data were available for 20 campers.

Two families contacted one of the investigators with concerns about the wording of two items. Their philosophy, shared by others in the epilepsy community, was to use the term, "condition" rather than "illness." They conveyed their intent to change the word, "sick," in items 7 and 11 to "epilepsy." The authors believe this change did not alter the intent of or responses to the items for this population.

Results

Analysis of attitude scale scores (Table 2) showed attitudes to be similar and slightly positive (M = 3.39) for the total sample at the two points in time. Paired t tests for change from Time 1 to Time 2 for the scale did not reach statistical significance. Analysis also was carried out on subgroups based on seizure frequency (infrequent versus frequent seizure group). Youths having less than six seizures per year were placed in the infrequent seizure group (n = 13), and those with weekly, daily, or multiple seizures per day were placed in the frequent seizure group (n = 7). Independent t tests indicated that the frequent seizure group had significantly more positive attitudes at both Time 1 and Time 2. However, there was a trend (p = .06) for those in the infrequent group to show an improvement in attitudes over time (Table 2). There also was a nonsignificant decrease (p = .22) in the CATIS scores for children in the infrequent seizure group over time.
Table 2. Attitude Scores for Total Sample and Subgroups
by Time of Administration

 Time 1 Time 2

 Standard Standard
Group Mean Deviation Mean Deviation

Total sample 3.39 0.82 3.39 0.60
(n = 20)
Infrequent
 seizure
 group 3.72 0.67 3.54 0.60
 (n= 13)
Frequent
 seizure
 group 2.78 0.72 3.12 0.58
 (n=7)

Group t Value p Value

Total sample 0.03 0.97
(n = 20)
Infrequent
 seizure
 group 1.30 0.22
 (n= 13)
Frequent
 seizure
 group 2.30 0.06
 (n=7)


An examination of items (Table 3) revealed that only item 10 (How often do you feel bad because you have epilepsy?) had significant change over time. Further analysis using Pearson correlation and t tests was conducted to evaluate relationships between attitudes scale scores and demographic (gender, age, and year at camp) or epilepsy variables (frequency of seizures and years since diagnosis). No relationship was found between gender, age, or years at camp. However, a significant relationship was found between attitude scores and seizure frequency. More frequent seizures were associated with more negative attitudes toward having epilepsy at both Time 1 and Time 2, r = 0.50, r = 0.40, respectively.
Table 3. Item Means for Instrument for Total Sample and
Frequent Seizure Group
 Total Sample

 Time1 Time2

 1. How good or bad do you 3.1 2.6
 feel it is that you have epilepsy?(a,b)
 2. How fair is it that you 2.7 2.6
 have epilepsy?(a,c)
 3. How happy or sad is it 2.4 2.6
 for you to have epilepsy?(d)
 4. How bad or good do you feel it is 2.3 2.4
 to have epilepsy?(a,b)
 5. How often do you feel it is to have 4.6 4.6
 epilepsy is your fault?(a,e)
 6. How often do you feel that 3.7 3.6
 your epilepsy keeps you from
 doing things you like to do?(f)
 7. How often do you feel that 3.4 3.7
 you will always be sick?(a,e)
 8. How often do you feel that 3.8 3.6
 your epilepsy keeps you from
 starting new things?(f)
 9. How often do you feel 3.3 3.4
 different from others because
 of your epilepsy?(a,e)
10. How often do you feel bad 3.2 3.9(**)
 because you have epilepsy?(f)
11. How often do you feel sad 3.6 3.5
 about being sick?"(a,e)
12. How often do you feel happy 4.4 4.4
 even though you have epilepsy(e)
13. How often do you feel just as 3.9 3.7
 good as other kids your age even
 though you have epilepsy?(a,f)

 Frequent Seizure

 Time1 Time2

 1. How good or bad do you 2.1 1.9
 feel it is that you have epilepsy?(a,b)
 2. How fair is it that you 1.7 3.0
 have epilepsy?(a,c)
 3. How happy or sad is it 1.9 1.9
 for you to have epilepsy?(d)
 4. How bad or good do you feel it is 1.4 1.6
 to have epilepsy?(a,b)
 5. How often do you feel it is to have 4.3 4.7
 epilepsy is your fault?(a,e)
 6. How often do you feel that 2.4 3.1
 your epilepsy keeps you from
 doing things you like to do?(f)
 7. How often do you feel that 2.6 3.4
 you will always be sick?(a,e)
 8. How often do you feel that 3.3 3.3
 your epilepsy keeps you from
 starting new things?(f)
 9. How often do you feel 2.7 3.1
 different from others because
 of your epilepsy?(a,e)
10. How often do you feel bad 2.7 3.4
 because you have epilepsy?(f)
11. How often do you feel sad 3.6 3.4
 about being sick?"(a,e)
12. How often do you feel happy 4.3 4.1
 even though you have epilepsy(e)
13. How often do you feel just as 3.1 3.6
 good as other kids your age even
 though you have epilepsy?(a,f)

(a) Reversed for coding. Response categories:

(b) Very good, a little good, not sure, a little bad, very bad

(c) Very fair, a little fair, not sure, a little unfair, very unfair

(d) Very sad, a little sad, not sure, a little happy, very happy

(e)Never, not often, sometimes, often, very often

(f) Very often, often, sometimes, not often, never

(**) p < .01


Discussion

The major goal of this study was to describe changes in attitudes toward epilepsy in children who attended a camp session for children with epilepsy. The camp experience followed the theme of camp as fun and did not provide information about epilepsy or skill-building opportunities beyond having the children repeat the name of their epilepsy medication. Although attitudes toward epilepsy did not change for the group as a whole, there was a strong trend for those in the frequent seizure group to improve in attitudes toward having epilepsy.

Several factors may have led to the lack of change in attitudes in the total sample of campers and the slight decrease in attitude by those in the infrequent seizure group. First, in this pilot, the mean attitude scores of the total group were higher than those reported by Austin and colleagues[2,3,10] and by Briery and Rabian.[7] For example, the pretest scores in the Briery and Rabian study ranged from 2.89 to 2.95. In contrast, the mean of all campers in this sample was 3.4. From Table 2, however, it is clear that the high scores of children in the infrequent seizure group accounted for the high overall mean. These unusually positive scores are the highest reported in any study using the CATIS. Attitude scores of the children in the frequent seizure group were similar to those in other studies using the instrument.

The slight decrease in attitude scores at posttest for campers in the infrequent seizure group might be explained by their association with other children who have much more severe seizure conditions. They might not have realized that seizures can be more severe than what they have. It might be these youths who have infrequent seizures need education about the variability in seizure frequency and reassurance that their seizure condition is not likely to change. Another possible explanation for these findings is that those attending camp (i.e., predominantly children who were doing well) were systematically different from those who did not attend. Balen, Fielding, and Lewis studied reasons for attending camp reported by British cancer patients.[4] The study results suggest that camp appeals to children who are confident, active, and able to separate from parents. They also are more likely to have parents who are eager to encourage independence and new experiences. It is possible that camp attendees have more positive attitudes than nonattendees and thus might have had little need to change their attitudes. Although this might be a plausible explanation, it is not supported by the data on campers from a larger and broader study of campers by Briery and Rabian.[7]

The location of the camp may have had an effect on campers' attitudes. The camp is located in the "Bible Belt" of the South where religion plays a central role in the lives of many families. Qualitative comments to camp staff indicate a number of children believed that epilepsy was something "given to them by God" and that they "just had to live with it." One child reported that because of her epilepsy she was a "witness for the Lord--of what He can do." She believed that whether or not her seizures are ever controlled will be up to the Lord, "Only He can heal me." Children holding these beliefs may not have negative attitudes toward the condition.

It is also possible that children were less than honest when filling out their Time 1 questionnaires at home before camp, feeling that parents might be reading their comments. The data from the current study differ from previous studies of children of the same ages by Austin et al. CATIS attitudes in this pilot study are higher than those previously reported for youths with epilepsy when data were collected using confidential computer-enhanced telephone interviews of the children. However, these previous studies also had more children with frequent seizures. Participants' qualitative comments in this study indicated they were honest about their choices, even when parents read their answers. However, future studies would be strengthened by data collection that eliminates potential influence of parents.

Findings in this study differed from those in the Briery and Rabian study in which overall attitudes did change after the camp experience. The nature of the camp experience for youths with epilepsy in this study might have been substantially different from those in the Briery and Rabian study. Campers in the Briery and Rabian study, with asthma, diabetes, and spina bifida, had education and skill building as an aspect of their camp experience. Achievement of new skills or increasing confidence in skills barely mastered might have a different effect than the mostly recreational and support nature of the epilepsy camp experience in this study. The only education component of the camp experience in this study was to ask campers to name their epilepsy medication and use.

Finally, the frequency of seizures was strongly related to attitude change. If indeed those with infrequent seizures begin camp with positive attitudes, camp may still be important and helpful even without a health-related attitude change. For the most effective evaluation of the effect of camp on the outcomes in youths with chronic conditions, instruments should be selected that measure the goals of the camp. Thus, it is logical that appropriate outcome measures will differ by the intent of the camp. For example, in one study, a "mission-based ecological evaluation" using written materials, videotape, and a site visit were used to determine whether a camp for youth with developmental disabilities achieved its mission of "a successful daily routine for every camper." 30 Findings revealed few dysfunctional, aggressive, or repetitious behaviors in the campers. On the contrary, findings documented rapid, multiple communication mechanisms among staff and campers as well as achievement of the camp mission by all campers. In short, the evaluation methods and measures in that situation were sensitive to the goals of the camping program, whereas in the current study no effort was made to select an evaluation instrument tailored to the particular goals of the camp.

When evaluating a camp experience, nurses need to ask the following question: "What methods and instruments best capture the desired effect of this camping experience for youth with epilepsy?" This pilot study suggests that the CATIS might be a useful scale in a comprehensive camp evaluation. Because medications are discussed, medication knowledge and self-efficacy in medication use also may increase. Communication and self-efficacy for problem solving are other areas that may be affected. In addition, qualitative methods also could be used to "tease out," from the campers' experience, how camp makes a difference in their lives. A qualitative component of an evaluation could focus on the protective factors that camp offers and whether "booster" camping experiences (i.e., returning to camp yearly) are needed to sustain the changes. Perhaps the camp experience acts as a protective factor, an antidote against hopelessness, an observable sign of normal child life. For example, one participant in this study shared that camp was the only time of year he felt he was "with friends"--people who understood and accepted him. If camp is a protective or resiliency-supporting factor, it is reasonable that booster doses might be needed. It also might be important to identify the effect of full participation in camp activities without the limits often imposed by families. A systematic evaluation of the overall camp experience using an instrument such as the Child Evaluation Inventory (CEI) could provide valuable information to camp planners.

Finally, it may be useful to evaluate the effect of having a camp experience on the parents. Sending a child to camp may have a positive effect on parents. The experience may reinforce family "normalcy" for the parents--it is a normal experience for a family to send a child to camp. In addition, this experience may have an additional effect because it provides families a respite. Exploring the effect of camp on the family as a whole may be an important component of camp evaluation.

Implications for Research and Practice

Nurses working with children who have seizures might consider encouraging children with frequent seizures to consider camp. Families of these children may need reassurance, support, increased orientation to the camping experience, or all of the above to reduce the anxieties of sending their child with frequent seizures to an unknown environment. However, there was a trend in this study that suggests these are the children whose attitudes may be the most influenced by a camp experience. In addition, when children are in camp for a week, the opportunity exists to combine having fun with interventions to enhance positive attitudes. Nurses might consider developing coping enhancement programs aimed at facilitating adjustment to epilepsy and enhancing positive attitudes of campers who are at risk for more negative attitudes. This pilot can be useful in developing a multisite evaluation of the camp experience for youth with epilepsy. Such an evaluation should address the overall experience, attitudes, and development of new skills such as communication and problem solving, and it should have a qualitative component to better delineate what camp means to those who attend. The use of multiple camps in a variety of geographical locations would help determine common outcomes. However, critical to any evaluation plan is a clear understanding of the mission of the camp and a mechanism to directly address the collection of mission-related data.

Limitations and Recommendations for Future Study

This study was limited by a small sample from only one geographic setting. There was no evaluation of the camp experience based on the goals of the camp program nor any overall evaluation of the camp experience. A wide age range (8-16 years) was used in this study. Even though there was no relationship between age and attitude, a larger sample would allow subgroup analysis by elementary, middle school, and high school youths to determine whether any of the subgroups had a relationship to attitudes. In addition, the change in attitude in campers with more frequent seizures only approached significance (p = .06). Although this finding may be a result of the small sample, clinical interpretation needs to be very tentative at this time. This pilot study supported the reliability of the CATIS in a camp population, demonstrated that campers were able to understand and complete the tool, and provided support for a larger multisite comprehensive study of the effect of a camp experience on attitudes toward epilepsy or other chronic conditions.

Summary

This study summarizes the attitudes about epilepsy in 20 campers before and after the camp experience. Attitude was not related to age, gender, or years in camp, but was related to seizure frequency. Those with more frequent seizures had the least positive attitude. Although overall, there was no change in attitude toward epilepsy after a camp experience, there was a trend (p = .06) for attitude in those with more frequent seizures to improve after the camp experience. In addition, a variety of issues of camping experiences for youths with disabilities were discussed.

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Questions or comments about this article may be directed to: Kathleen J. Sawin, DNS RN CS FAAN, School of Nursing, MCV Campus, Virginia Commonwealth University, Box 980567, Richmond, VA 232980567. She is an associate professor at the university.

Susan L. Lannon, MA RN, is a clinical instructor and epilepsy nurse clinician at the University of North Carolina-Chapel Hill.

Joan K. Austin, DNS RN FAAN, is a distinguished professor, School of Nursing, Indiana University, Bloomington.

During the preparation of this article, the first author was a postdoctoral fellow in the School of Nursing (NIH Institutional National Research Service Award #5 T32 NR07066) and in Leadership Education in Adolescent Health (Maternal and Child Health Bureau, DHHS), School of Medicine, Indiana University.
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Author:Sawin, Kathleen J.; Lannon, Susan L.; Austin, Joan K.
Publication:Journal of Neuroscience Nursing
Article Type:Statistical Data Included
Geographic Code:1USA
Date:Feb 1, 2001
Words:6550
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