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. Children and adolescents with celiac disease face ongoing challenges of making daily dietary choices. As children grow, they need to become more involved in the decision-making process and take on self-management responsibilities. OTs have an important role in promoting self-management of celiac disease and the decision-making process during the transition years from adolescence to young adulthood.
Primary Author and Speaker: Sonya Meyer
Contributing Authors: Elena Lionetti, Carlo Catassi
PURPOSE: The study aimed to identify children and adolescent's food-related decision making related to daily life with celiac disease. Occupational therapists play an important role in chronic disease management (American Occupational Therapy Association, 2014). Celiac is an autoimmune chronic health condition in which the only treatment is adhering to a restrictive lifelong gluten-free diet. Children and adolescents face an ongoing challenge of making daily dietary choices which are essential for their health (Al-Toma et al., 2019). As children grow, they gradually become more involved in the decision-making process, previously led by their parents. This process creates a combined child-parent influence on the development of effective present and future self-management (Miller & Harris, 2012). Incorporating an occupational view to identify the features of the decisions and problems that these children and adolescents face is important for addressing their health management needs.
DESIGN: This cross-sectional study included 126 dyads of parent and their children (8-11 years) or adolescents (12-18 years), with a confirmed diagnosis of celiac disease for no less than 6-months prior to the study. Participants were recruited via the local celiac association and social media. The time since diagnosis ranged from 6-12 months (3.2%) to over 3 years (67.5%). Children and adolescents with other physical and/or neurological disabilities were excluded.
METHOD: First, parent and child/adolescent dyads were interviewed and together identified a recent food-related decision-making challenge. Then, each participant completed the Decision-Making Involvement Scale (DMIS) (Miller & Harris, 2012) independently. All challenges reported were coded and categorized according to the Celiac Disease-Children's Activity Report (CD-Chart) (Meyer & Rosenblum, 2017) food-related activity items (e.g., eating out with friends) and environments (e.g., social environment). Pearson's chi-square test was used to determine age group differences.
RESULTS: Eighty-one percent of the dyad decisions matched the food-related activities included in the CD-Chart. Differences were found in the activity environment concerning the decision that they made. For example, most challenging situations were found in the social environment among the children (65.6%) and the adolescents (32.3%). More adolescents (28.2%) discussed activities concerning taking trips away from home than the children (3.3%). A significant difference was found between groups regarding the primary decision maker (χ2 (2) = 10.06, p < .01). In approximately half of the dyads in both age groups decisions were made jointly (children: 50.8%; adolescents: 53.8%). However, parents made the decision for 44.3% of the children and for only 24.5% of the adolescents. No significant correlation was found between the child's gender and who made the decision (r = 1.32, p = ns).
CONCLUSION: The representation of daily life situations and decisions concerning celiac management change during childhood and the responsibility gradually moves from predominantly the parent to the adolescent. Understanding and analyzing the activities and the decision-making process can contribute to promote self-management during the transition years from adolescence to young adulthood.
IMPACT STATEMENT: Highlighting the scope of the decisions/problem expressed by children and adolescents with celiac disease related to participation in food-related activities, enhances the contribution of the occupational view to identify challenges. Occupational therapists have an important role in promoting health management of celiac disease from childhood to adulthood.
References
American Occupational Therapy Association. (2014). The role of occupational therapy in primary care. American Journal of Occupational Therapy, 68, S25–S33. https://doi.org/10.5014/ajot.2014.686S06
Al-Toma, A., Volta, U., Auricchio, R., Castillejo, G., Sanders, D. S., Cellier, C., ... & Lundin, K. E. (2019). European society for the study of coeliac disease (ESsCD) guideline for coeliac disease and other gluten-related disorders. United European Gastroenterology Journal, Advance online publication. https://doi.org/10.1177/2050640619844125
Miller, V. A., & Harris, D. (2012). Measuring children's decision-making involvement regarding chronic illness management. Journal of Pediatric Psychology, 37(3), 292-306. https://doi.org/10.1093/jpepsy/jsr097
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
