Understanding youth preferences for a mentorship program for celiac disease: A qualitative study

Celiac disease (CeD) is an autoimmune condition triggered by gluten ingestion that causes intestinal inflammation and multiple symptoms. Management requires strict adherence to a gluten-free diet (GFD), yet youth with CeD on a GFD report lower quality of life (QoL) and higher rates of depression and anxiety. Although mentorship programs for youth with chronic illnesses can enhance QoL, increase self-efficacy, and improve mental health outcomes, research on CeD-specific programs remains sparse. This qualitative study explored the needs and preferences of youth with CeD to inform the development of a tailored mentorship program.

Youth ages 13-25 with CeD participated in three online focus groups in fall 2023. Interviews were recorded, transcribed, and analyzed thematically.

Sixteen participants (66.67% female, 60% White), mean age 16.0 years and mean diagnosis age 8.47 years, completed focus group interviews. Three themes emerged: (1) shared lived experiences, (2) accessibility and flexibility in program structure, and (3) fostering connection and community. Participants favored peer relationships matched on age, gender, and shared interests over traditional hierarchical mentorship models. They preferred a hybrid format combining in-person and virtual one-on-one interactions focused on living with CeD, with flexible monthly meetings over 4-6 months.

Findings highlight the importance of peer mentorship rooted in shared experiences and adaptable structures. Prioritizing peer connections, flexible program design, and community building may foster meaningful engagement among youth with CeD. These results guide the development of programs that support social connection, self-management, and psychosocial well-being in youth with CeD.