Abstract
BackgroundCeliac disease (CD) is a chronic autoimmune condition that, when left untreated, increases the risk of significant health challenges. The only medical treatment for CD is a strict gluten-free diet (GFD), which is behaviorally dependent. Despite quality of life (QOL) and adherence being impacted by the complicated and burdensome nature of the GFD, there exists a paucity of established behavioral interventions aimed to improve adherence and QOL in adolescents with CD.AimsDevelop and refine the Gluten-Free Resilience and Overall Wellness (GROW) Project, the first family-centered, online behavioral intervention to improve QOL and GFD self-management in adolescents with CD and their parents.MethodsStudy staff adapted and refined an existing online behavioral intervention for adults with CD. Two rounds of interviews with patient, parent, and clinician stakeholders were conducted to collect feedback and inform the final intervention structure and content. Qualitative interview data were analyzed using inductive content analysis.ResultsStakeholder feedback supported a group-based, virtual format across both rounds of interviews. Participants proposed format changes to the intervention to increase participant engagement. Content suggestions included enhancing information about reliable digital resources, building resilience, GFD and alcohol, and the scientific development of the program.ConclusionThe GROW Project addresses a critical need for interventions that strengthen behavioral self-management strategies in adolescents with CD and their families by providing virtual skill-building and psychoeducation that may improve family's QOL while managing CD and the GFD.