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Short Communication: Gastroenterology: Inflammatory Bowel Disease

Enhancements in Confidence, Acceptance, and Friendship at a Summer Camp for Children With Inflammatory Bowel Disease

McCombie, Andrew; Gearry, Richard B.; Lopez, Robert N.; Lönnfors, Sanna; Day, Andrew S.

Author Information
Journal of Pediatric Gastroenterology and Nutrition: September 2017 - Volume 65 - Issue 3 - p 311-313
doi: 10.1097/MPG.0000000000001526

Abstract

What Is Known

  • Pediatric inflammatory bowel disease impairs psychosocial development and psychological wellbeing of its sufferers.
  • Camps have been shown to be of benefit to pediatric inflammatory bowel disease sufferers.

What Is New

  • The present study demonstrates that confidence and acceptance were enhanced by a summer camp for children with inflammatory bowel disease.
  • The opportunity to make new friends who are “going through the same thing” at camp was a perceived benefit; most had never been around other children with inflammatory bowel disease before the camp.

Up to 25% of inflammatory bowel disease (IBD) diagnoses occur in the first 2 decades of life. A recent European patient survey reported that IBD can affect the confidence, self-esteem, educational achievement, and career development of young people (1). Meeting other patients with IBD seems to have a positive effect on young people. In a European patient survey, 39% of respondents with IBD reported that meeting someone else with IBD made them feel more optimistic, rising to 43% among those who are 35 years and younger (2).

Illness-specific summer camps may help overcome these problems caused by IBD and increase the social networks of the affected children. Three previous studies showed beneficial effects from attendance at IBD-specific summer camps for children and adolescents in the USA. One study reported a significant improvement in overall quality of life (QoL), social functioning, and bowel symptoms of children and adolescents aged 9 to 16 years with IBD after a 1-week camp (3). Another study found that compared with pediatric patients with IBD who had not attended a camp, the exposure to peers with IBD helped the camp participants build an empathetic social network, find new perspectives on their disease and improve their psychosocial adjustment and acquisition of knowledge about the disease and therefore eventually live with their chronic illness (4). Finally, a study of 21 youths ages 14 to 17 years who attended Camp Oasis and participated in a Facebook page after camp reported insignificant trends indicating improvements in QoL and social functioning 2 months after the camp compared to before camp (5). This study was, however, underpowered and had a low response rate (31%).

In addition, there has been 1 small retrospective study performed in Europe which asked 55 camp attendees from across Europe a series of questions (6). They agreed or strongly agreed that attending the camp improved their confidence in dealing with IBD (92.7%), acceptance of IBD (94.6%), and overall QoL (80.0%). For most participants (63.4%), meeting other patients with IBD was the most enjoyable experience. For example, 1 respondent said what they enjoyed most about the camp was “interacting with other IBD patients who had a complete understanding of what each other was going through.” Most respondents (98.2%) would recommend camps to other people with IBD.

The abovementioned studies were performed in North America, whereas the European study had an unspecified response rate and the questionnaire was completed a long time after the camps (up to 4 years). Therefore, the present study conducted a survey (using the same questions as the European survey) aiming to define the effects of a summer camp for young people of New Zealand with IBD immediately after the camp. It was hypothesized that the summer camp would improve the campers’ confidence in dealing with and acceptance of IBD and their QoL. Open-ended responses were also collected.

MATERIALS AND METHODS

Participants

The participants in the present study were children who attended the camp. Informed consent was obtained by getting the campers to tick a box agreeing to participate online.

Camp

The camp was held in Auckland, New Zealand, January 25–30, 2015. Camp attendees undertook a number of activities including archery, confidence course, wall climbing, kayaking, and abseiling (rappelling). There were 6 medical staff (including 3 IBD nurses and 3 gastroenterologists) and 15 volunteers. Although there were no formal educational or psychotherapeutic sessions about IBD offered, the campers were surrounded by older volunteers (most of whom had IBD), fellow campers with IBD, and trained medical staff. Hence any therapeutic benefit would most likely be through mixing with other people who are knowledgeable about the illness and not through psychoeducation per se. That being said, the confidence course (which involved physical activities requiring co-operation with other group members) may have provided direct psychological benefit to the campers.

Questionnaire

Campers were emailed the questionnaire immediately after the camp. The questionnaire has been used previously (Supplemental Digital Content 1, Fig. 1, http://links.lww.com/MPG/A893) (6). The questionnaire asked about whether the camp improved their confidence in dealing with IBD, their acceptance of IBD, and their overall QoL. The participants also answered open-ended questions about what about the camp they enjoyed most.

Statistics

Frequencies and percentages were calculated using SPSS version 22 (IBM, Armonk, NY) (7). The only statistical tests performed were chi-square tests splitting age (median split) versus strongly agree/agree versus disagree for the questions surrounding confidence, acceptance, and QoL and what their most beneficial experience from the camp was. No analyses were performed comparing ulcerative colitis to Crohn disease.

Ethical Considerations

All participants were provided with an information sheet, but did not have formal written consent requested. This was as approved by the University of Otago, Human Ethics Committee on December 19, 2014 (H14/135).

RESULTS

The camp was attended by 44 children ages 10 to 18 years who were all invited to participate in the questionnaire. Thirty-six campers responded (81.8% response rate; median age 14 years [range 10–18]; 83.3% Crohn disease; 41.7% girls). Of these campers, 2 were on oral corticosteroids (5.6%), 12 were on biological treatment (33.3%), 22 were on a thiopurine or methotrexate (61.1%), 13 were on 5-aminosalicylic acid (36.1%), 3 were on no medication (8.3%), and 5 did not provide information about what medications they were on (13.9%).

Quantitative Answers

The vast majority of respondents agreed or strongly agreed that the camp improved their confidence in dealing with IBD (86.1%), their acceptance of having IBD (83.3%), and their overall QoL (75.0%). Conversely, a small minority of respondents disagreed that the camp improved their confidence in dealing with IBD (8.3%), their acceptance of having IBD (11.1%), and their overall QoL (16.6%); no campers strongly disagreed with these statements.

Most reported that meeting their fellow campers was the most beneficial experience to come from the camp (72.2%), whereas a minority reported the activities to be the most beneficial experience (13.9%). Most also reported that this was their first time around other children with IBD (75.0%), and that they made new friends with IBD (97.2%). All would recommend the camp experience to others with IBD and 86.1% would attend the same camp again in a year.

When a median split was performed on age, there was a trend toward older children being more likely to report meeting fellow campers to be their most beneficial experience, but this was not significant (83.3% vs 66.7%, χ2 = 1.29, P = 0.26). Chi-square analyses of young compared with old did not find any significant differences in terms of confidence, acceptance, or QoL.

Qualitative Answers

All the answers to the qualitative questions are attached in Supplemental Digital Content 2, Table, http://links.lww.com/MPG/A894. A selection of positive responses to the question about what they enjoyed most about the camp is shown in Table 1. The most common theme throughout the answers was enjoying meeting other people with IBD.

TABLE 1
TABLE 1:
A selection of positive responses to the question “What did you enjoy the most about the camp?” from campers attending the first IBD Camp in New Zealand

DISCUSSION

The aim of the present study was to ascertain the effects of a summer camp for New Zealand young people with IBD in terms of confidence, acceptance, QoL, and friendships gained. The hypotheses were confirmed in that the majority of children self-reported to have made significant gains in these areas. As reported in previous studies (3,4,6), the camp was shown to have a positive effect on campers. Also consistent with previous research, most campers reported that meeting other campers with the same condition was the most beneficial thing they gained from the camp (4,6).

Limitations and Future Directions

The present study had a small sample size, was cross-sectional, and was neither randomized nor controlled and therefore the results should be viewed with caution. The present study was underpowered to examine differences meaningfully between younger and older children and those with Crohn disease compared with those with ulcerative colitis. Moreover, the questions about confidence, acceptance, and QoL are not validated, although the open-ended answers did seem to reinforce the answers of the respondents on the multichoice questions. Ideally, future research should be a randomized controlled trial comparing constructs such as self-efficacy (8), acceptance (9,10), and QoL (11) at pre- and postintervention for the treatment and control group. Having a randomized control group may, however, be impractical.

Mid- to long-term outcomes of campers could be examined in future studies. For example, it could be investigated whether the friendships remain after the campers leave camp or if these disappear when the campers return home. Finally, campers’ nonparticipation in the activities was not recorded; doing so would have allowed comparisons between campers with different levels of engagement and so future studies should redress this.

CONCLUSIONS

The present study demonstrated the importance of summer camps for children with IBD. Confidence, acceptance, and social networks were enhanced and, most importantly, the majority of children ended the camp feeling less socially isolated by their disease. Future research should examine the outcomes measured more objectively using validated questionnaires and a pre-post design; a randomized control group would be ideal but impractical.

Acknowledgments

The authors wish to acknowledge all volunteers and medical staff who helped run the camp. The authors also acknowledge the following sponsors of the first Summer Camp in New Zealand (who did not financially support the questionnaire component of the study): Baxter, Abbvie, Jetstar Airways, Pharmaco, Round the Bays, and Janssen.

REFERENCES

1. Lönnfors S, Vermeire S, Avedano L. IBD and health-related quality of life—discovering the true impact. J Crohn Colitis 2014; 8:1281–1286.
2. Wilson B, Lönnfors S, Vermeire S, et al. The true impact of IBD: a European Crohn's and ulcerative colitis patient life. Brussels, Belgium; 2012. http://efcca-solutions.net/media/jointhefight/ImpactReport.pdf. Accessed July 7, 2016.
3. Shepanski MA, Hurd LB, Culton K, et al. Health-related quality of life improves in children and adolescents with inflammatory bowel disease after attending a camp sponsored by the Crohn's and Colitis Foundation of America. Inflamm Bowel Dis 2005; 11:164–170.
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6. P491. Now I know I’m not alone”: participating in a disease-specific summer camp improves the quality of life of young people with inflammatory bowel disease. J Crohn Colitis 2015; 9 (suppl 1):S324–S325.
7. IBM., Corp. IBM SPSS Statistics for Windows. 22.0 ed. Armonk, NY: IBM Corp; 2013.
8. Keefer L, Kiebles JL, Taft TH. The role of self-efficacy in inflammatory bowel disease management: preliminary validation of a disease-specific measure. Inflamm Bowel Dis 2011; 17:614–620.
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11. Otley A, Smith C, Nicholas D, et al. The IMPACT questionnaire: a valid measure of health-related quality of life in pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr 2002; 35:557–563.
Keywords:

camp; Crohn disease; inflammatory bowel disease; ulcerative colitis

Supplemental Digital Content

Copyright © 2017 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition