Impact of a Child’s Celiac Disease Diagnosis and Management on the Family

• Published in: Digestive diseases and sciences 2020-10, Vol.65 (10), p.2959-2969
• Main Authors: Russo, Carrie, Wolf, Randi L., Leichter, Hope J., Lee, Anne R., Reilly, Norelle R., Zybert, Patricia, Green, Peter H. R., Lebwohl, Benjamin
• Format: Article
• Language: English
• Subjects: Adaptation, Psychological; Adolescent; Adolescent Behavior; Age Factors; Biochemistry; Care and treatment; Celiac disease; Celiac Disease - diet therapy; Celiac Disease - pathology; Celiac Disease - psychology; Child; Child Behavior; Cost of Illness; Diagnosis; Diet; Diet, Gluten-Free - psychology; Disease management; Families & family life; Family; Family Relations; Fathers - psychology; Female; Gastroenterology; Gluten; Hepatology; Humans; Interviews as Topic; Male; Medical diagnosis; Medicine; Medicine & Public Health; Mothers; Mothers - psychology; Nutrition; Oncology; Original Article; Patient Compliance; Qualitative Research; Quality of Life; Requirements; Siblings; Siblings - psychology; Transplant Surgery
• ISSN: 0163-2116; 1573-2568
• DOI: 10.1007/s10620-020-06316-0

Background Little attention has been paid to family-wide repercussions of a child’s celiac disease diagnosis and concomitant gluten-free diet management. Aims We quantitatively and qualitatively describe positive and negative family-wide effects of a child’s celiac disease diagnosis and disease management. Methods We interviewed 16 families with at least one child currently following a gluten-free diet, with a biopsy-confirmed celiac disease diagnosis ≥ 1 year prior. Mothers and fathers independently rated child’s dietary adherence, concern about child’s health status, burden in caring for child’s dietary needs, and level of change in various aspects of life post- diagnosis. Children rated their own celiac-specific quality of life through a validated scale. Seventy-one in-depth semi-structured interviews were conducted with 16 children with celiac disease, 31 parents, and 24 siblings. Results Mothers and fathers rated the effects of their child’s celiac disease differently, with mothers reporting more lifestyle changes and heavier burden. Negative and positive themes emerged from the interviews. Mothers felt the burden of managing a gluten-free diet. Fathers felt guilty for carrying a celiac disease-associated gene and both fathers and siblings regretted limited food choices at restaurants and home. The need to be a more creative cook was seen as a positive effect by mothers. Fathers appreciated new family traditions. Siblings felt they had developed empathy for others. A framework is proposed to illustrate these family-wide interactions. Conclusions A child’s celiac disease diagnosis and disease management affects the entire family. Our results will inform family-centered interventions that maximize quality of life for families.