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Celiac disease and leisure participation

Background and Project Objectives

Celiac disease is an autoimmune disorder caused by gluten ingestion in individuals with genetic predisposition, leading to a chronic inflammation in the small intestine. In Germany, the prevalence of celiac disease in children and adolescence is estimated at 0.9% of the respective population. The only available treatment is adhering to a strict and lifelong gluten-free diet, while nonadherence is associated with increased morbidity and mortality. However, maintaining the gluten-free diet has often negative consequences for social domains of life, especially for children and adolescents. Studies show that in social situations, children and adolescents with celiac disease often feel vulnerable, isolated, and stigmatized by others. As a consequence, they tend to participate less than their healthy peers in social and leisure activities involving food, which by itself can be detrimental to positive identity formation and social development.

On this background, this research project examines the potential benefits of leisure activities specifically designed to attend to the needs of children and adolescents with celiac disease, and particularly recreational camps. Such “Celiac camps” enable young patients to experience developmentally-adequate camp activities in a safe and gluten-free environment, together with similar others. By studying the experience of children and adolescents who take part in such camps, we focus on the following main research questions: 

• Does attending celiac camps improve children’s health-related quality of life and positive youth development? Do such benefits last for the long-term?
• Does attending celiac camps improves adherence to the gluten-free diet, self-management behaviors and commitment to maintain lifelong treatment?
• What socio-psychological mechanisms take places in celiac camps linking participation to psychosocial benefits? In particular:
• Do celiac camps increase social support by actively encouraging intensive socializing and friendship formation?
• Do celiac camps contribute to positive illness identity, which in turn increases self-management behavior and better well-being?
• Finally, do celiac camps help alleviate the anxiety related to having celiac disease, thereby promoting better adjustment and adherence to the gluten-free diet?

Previous and Current Studies

Our preliminary research (Shani et al., 2020) demonstrated the positive and even long-term effects of celiac camps on children’s and adolescents’ health-related quality of life. Utilizing a cross-sectional study among adolescents and youth with CD in Germany, conducted in cooperation with the German Celiac Society (Deutsche Zöliakie Gesellschaft), we revealed the potential mechanisms through which participation in celiac-focused activities can improve patients’ quality of life, and particularly through increased social support.

Currently we are making one step further and are conducting a larger study in cooperation with the Swiss Celiac Society (IG Zöliakie der deutschen Schweiz https://zoeliakie.ch/de/) and a German self-help group for children and youth with celiac (Zölinet https://zoelinet.de/), in which we implement a quasi-experimental design. In this study we measure possible short- and long-term effects as a result of attending celiac camps in Switzerland and Germany by comparing camp participants to a matching control group of nonparticipants (for a sample of questions and measures click here).

The study is currently ongoing and participated by dozens of children and adolescents. We are looking forward to sharing the results with you, with the scientific community, and with the celiac community soon!

Documents and Publications

• Approval by the ethics committee of Osnabrück University.
• Academic publications:
• Shani, M., Kraft, L., Müller, M., & Boehnke, K. (2020). The potential benefits of camps for children and adolescents with celiac disease on social support, illness acceptance, and health-related quality of life. Journal of Health Psychology. Download here
• Meyer, S., & Shani, M. (2021). Structural validation and dyadic child-parent measurement invariance of the celiac disease quality of life questionnaire. European Journal of Gastroenterology & Hepatology. Download here
• Poster presented at the 13th Annual Conference of the Society for Personality and Social Psychology, 9-13 February 2021. Download here

Further psychological research on celiac disease

Celiac disease and coping strategies: We want to explore parents' experiences regarding their child's celiac disease. The following questions will be addressed: What difficulties do parents face as a result of their child's diagnosis? What coping strategies do you use to enable your child's gluten-free diet? And how do parents cope with this task?

Taking Part in the Project

We are looking for celiac associations in Europe or elsewhere, which would like to join us in studying their ongoing or planned celiac-focused activities. In case you are affiliated to a celiac society or organization and interested in our project, please let us know by writing a short message to Dr. Maor Shani, maor.shani@uos.de.

If you are a parent of a child or teenager and you would like your child to take part in our activities and research, please write to Dr. Maor Shani, maor.shani@uos.de

Feel free to contact us with questions, suggestions and comments!

Contact details

University of Osnabrück (UOS)
Institute of Psychology
Developmental Psychology
Seminarstraße 20
49074 Osnabrück
Contact: Dr. Maor Shani
Email: maor.shani@uos.de