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Navigating Celiac Disease and the Gluten-Free Diet in a Family Setting: A Mixed Methods Study of Families with Children with Celiac Disease

Russo, Carrie

Celiac disease is an autoimmune disorder triggered by the ingestion of gluten, which is found in wheat, barley, and rye. The only treatment for celiac disease is a strict gluten-free diet (GFD), which eliminates common gluten-containing foods found in many cultures and cuisines.
This research examined how families experienced celiac disease and the GFD in their households, focusing on the ripple effect of celiac disease for all members of the family and how families promoted adherence and quality of life (QOL). A mixed-methods approach used questionnaires, photographs, and semi-structured interviews with families recruited from the Celiac Disease Center at Columbia University Medical Center. Participants were 16 families with children ages 8-18 living at home who had physician-confirmed diagnoses of celiac disease. A total of 71 in-depth semi-structured interviews were conducted (n =16 reference children with celiac disease, 16 mothers, 15 fathers, 24 siblings).
Results showed that the reference children with celiac disease had high GFD adherence (mean CDAT = 9) and QOL (mean CDPQOL 81 of 100). Mothers’ and fathers’ ratings of how their child’s celiac disease diagnosis affected their lifestyle, social life, and level of burden in caring for child’s dietary needs differed significantly (all p-values < 0.05), with mothers reporting more change and burden. Emerging themes related to a negative ripple effect included the burden of assuming the majority of food tasks related to GFD (mothers), the limited restaurant choices for the family (fathers), and feeling annoyed by having to limit certain foods at home (siblings). Emerging themes related to a positive ripple effect, included becoming more creative cooks (mothers), incorporating new family traditions (fathers), and developing empathy for others (siblings).
Overall, there was substantial evidence of a ripple-effect of a child’s celiac disease diagnosis on other family members, including how mothers and fathers may experience the change in lifestyle and added responsibilities of maintaining the GFD differently. Including parents and siblings in research provides insight into the entire family experience and can help inform family-centered interventions on how to maximize QOL for everyone impacted by a child’s celiac disease diagnosis.

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More About This Work

Academic Units
Health and Behavior Studies
Thesis Advisors
Wolf, Randi
Degree
Ed.D., Teachers College, Columbia University
Published Here
June 6, 2019
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