Date Presented 4/8/2016
A chronic condition such as celiac disease entails daily health management. Execution of the required health behavior can be challenging. An occupational view considering activities and participation can contribute to adaptive strategies about how to manage the condition among children and adolescents.
Primary Author and Speaker: Sonya Meyer
Additional Author and Speaker: Sara Rosenblum
PURPOSE: The purpose of this study was to explore perceptions of children and adolescents of their everyday experiences with celiac disease (CD), and those of their parents, in various life environments in order to develop an occupational-based assessment.
BACKGROUND: CD is a chronic condition precipitated by exposure to gluten. Managing a restrictive gluten-free diet is the only available treatment. Treatment adherence among children and adolescents involves unique challenges and is often inadequate. Literature reveals lack of reference to an occupational view in the context of everyday life, self-management, and coping characteristics among children and adolescents in various food-related activities and environments (i.e., home, school, social). Personal and parental experiences can provide deeper understanding of daily functioning concerning participation, challenges, and limitations and self-management of CD.
DESIGN: This was a focus group qualitative study, based on a convenience sample.
PARTICIPANTS: Participants were 22 children and adolescents diagnosed with CD for more than mo and their parents. Participants were recruited via online support forums and the local Celiac Association. Participants were divided into four focus groups, including 12 children ages 8–12 yr, 10 adolescents ages 13–16 yr, and two respective parent groups.
METHOD: Participants’ demographic information and health status was obtained from parents. Focus group interviews were conducted, taped, and transcribed verbatim.
ANALYSIS: Qualitative data were coded and common experiences, concerns, supports, and barriers were identified and categorized.
RESULTS: Similarities and differences emerged in the four groups revealing and emphasizing varying perspectives among children, adolescents, and their parents. Categories not previously described in available literature, viewing body functions, personal and environmental factors, and in particular participation in food-related everyday activities through an occupational lens were revealed.
Children’s and adolescents’ self-management strategies and conflicting and compatible perceptions concerning independence and control were exposed. Experiences of participation limitations in a wide range of everyday food-related activities occurring in the home, school, and social environments were described. For example, a 12-yr-old girl shared, “I go out for pizza with friends just to talk because I can’t eat anything. I can make a gluten free pizza for myself when I get home, but I don’t feel like it anymore, that’s not the point, it’s without my friends.” Findings served as a foundation for development of a unique participation in food-related activities measure.
DISCUSSION: The focus groups revealed a wide scope of everyday coping with CD issues. Results contribute to deeper understanding of specific CD characteristics of daily life and management. This occupational view accentuates children’s and adolescent’s perspectives of participation in food-related activities, roles, strategies, and supporting or hindering factors in everyday life with CD.
IMPACT STATEMENT: This is a pioneer study presenting an innovative occupational approach to children’s and adolescents’ daily management of CD while considering daily functional needs that have yet to be met. The study emphasizes strategies required for participation in food-related activities while considering changing personal and environmental needs. This approach may advance future research on the role of occupational therapy in promoting population’s self-management and occupational engagement.
