Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations.
Celiac disease is a chronic condition, treated by a strict lifelong gluten-free diet. Adolescents need to gain independence and assume responsibility for self-managing their diet while participating in daily food-related activities. Maintaining health, well-being, and quality of life and developing self- and illness identity are central developmental tasks during adolescence. OTs have an important role in addressing and promoting health management needs.
Primary Author and Speaker: Sonya Meyer
Additional Authors and Speakers: Liron Lamash
PURPOSE: The study aimed to describe the illness identity profiles of adolescents with celiac disease and to examine the relationships among the these profiles, participation in food-related activities characteristics and quality of life. Celiac is a chronic health condition and the only treatment is adhering to a restrictive lifelong gluten-free diet. Adolescents need to gain independence and assume responsibility for self-managing their diet (Fishman et al., 2018). Participating in daily activities in adolescence has an important role in maintaining health, wellbeing, quality of life, and developing self-identity (Meyer & Rosenblum, 2017). Identity is a central developmental task during adolescence and young adulthood, and research concerning identity in the process of coping with chronic health conditions is emerging. Understanding these adolescents’ illness identity profiles in relation to characteristics of their participation in food-related activities and quality of life can contribute to addressing their health management needs.
DESIGN: This cross-sectional study included 91 adolescents ages 12-18 years (M age = 14.67, SD = 1.69) diagnosed with celiac for at least 12-months prior to the study.
METHOD: A link to an anonymized online questionnaire created using google forms was published via social media interest groups and the Israel Celiac Rights Organization, calling for adolescents aged 12 to 18 who are available to complete the questionnaire on their own behalf. Parents and adolescents were asked to sign online consent, to provide basic demographics, and adolescents completed the following questionnaires: 1) The Illness Identity Questionnaire (IIQ) (Oris et al., 2016), 2) The occupational based Celiac Disease Children’s Activities Chart (CD-Chart) (Meyer & Rosenblum, 2017), 3) The Pediatric Quality of Life Inventory (PedsQL) (Varni et al., 2001).
RESULTS: The internal reliability of the IIQ in this population was acceptable for the total score (α = .87) and the four IIQ components (α = .75 to .90). A significant difference was found between the positive illness identity components’ (acceptance, enrichment) mean score and the negative components’ (rejection, engulfment) mean score (t(90) = 11.45, p < .001, d = 1.98), so the adolescents reported a more positive than negative illness identity. Significant correlations were found between the IIQ total score and the amount of food-related activities (r = .30, p < .01), and the enjoyment level (r = .34, p < .001), so the more the adolescents sensed positive illness identity, they participated in more activities and enjoyed them more. Significant positive correlations also were found between the IIQ total score and the PedsQL social scale (r = .53, p < .001), school scale (r = .34, p = .001), physical scale (r = .30, p < .01) and emotional scale (r = .22, p < .05), meaning more positive illness identity correlated with better health-related quality of life.
CONCLUSION: Adolescents with celiac sensed more positive than negative identity feelings towards their health condition. Their illness identity profile was associated to specific participation in food-related characteristics and to their health-related quality of life. These findings can contribute to understanding adolescents’ ability to cope with their chronic health condition and effectively self-manage their health during the transition years from adolescence to young adulthood. Highlighting the role of the illness identity concept among adolescents with celiac and its relationship to participation in food-related activities and health-related quality of life, enhances the contribution of the occupational view to identify challenges. Occupational therapists have an important role in addressing and promoting health management needs.
References
Fishman, L. N., Kearney, J., DeGroote, M., Liu, E., Arnold, J., & Weir, D. C. (2018). Creation of Experience-based Celiac Benchmarks-The First Step in Pre-Transition Self-Management Assessment. Journal of Pediatric Gastroenterology and Nutrition, 67(1), e6–e10. https://doi.org/10.1097/MPG.0000000000001908
Meyer, S., & Rosenblum, S. (2017). Development and validation of the celiac disease-children’s activities report (CD-chart) for promoting self-management among children and adolescents. Nutrients, 9(10). https://doi.org/10.3390/nu9101130
Oris, L., Rassart, J., Prikken, S., Verschueren, M., Goubert, L., Moons, P., & Luyckx, K. (2016). Illness identity in adolescents and emerging adults with type 1 diabetes: Introducing the illness identity questionnaire. Diabetes Care, 39(5), 757–763. https://doi.org/10.2337/dc15-2559
Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQLTM 4.0: Reliability and validity of the Pediatric Quality of Life InventoryTM Version 4.0 Generic Core Scales in healthy and patient populations. Medical Care, 39(8), 800–812. https://doi.org/10.1097/00005650-200108000-00006
