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Understanding youth preferences for a mentorship program for celiac disease: A qualitative study
Ashley L Dunn1, Parnia Abrishamchian1, Ally Koh1
1Stanford Medicine Children's Health Center for IBD and Celiac Disease, Division of Gastroenterology, Hepatology, and Nutrition, Department of Pediatrics Stanford University School of Medicine Palo Alto California USA.
JPGN Reports
|July 25, 2026
Summary
Youth with celiac disease (CeD) desire peer mentorship programs focused on shared experiences and flexible structures. Tailored programs can improve quality of life and mental well-being for adolescents with CeD.
Area of Science:
- Pediatric autoimmune disorders
- Chronic illness management in adolescents
- Psychosocial support for youth
Background:
- Celiac disease (CeD) is an autoimmune disorder triggered by gluten, necessitating a strict gluten-free diet (GFD).
- Youth with CeD on a GFD often experience reduced quality of life (QoL) and increased rates of depression and anxiety.
- Existing research on mentorship programs for CeD is limited, despite their proven benefits for other chronic illnesses.
Purpose of the Study:
- To explore the needs and preferences of youth with CeD for a tailored mentorship program.
- To inform the development of a supportive program addressing the unique challenges faced by adolescents with CeD.
- To enhance QoL and mental health outcomes in young individuals managing CeD.
Main Methods:
- Qualitative study involving three online focus groups with youth aged 13-25 diagnosed with CeD.
- Focus group interviews were audio-recorded, transcribed, and subjected to thematic analysis.
- Exploration of participant needs and preferences for a potential mentorship program structure and content.
Main Results:
- Sixteen participants (mean age 16.0 years) identified three key themes: shared lived experiences, program accessibility/flexibility, and fostering connection/community.
- Participants preferred peer mentorship matched by age, gender, and interests over traditional models.
- A hybrid format (in-person/virtual) with flexible monthly meetings over 4-6 months was favored.
Conclusions:
- Peer mentorship grounded in shared experiences and adaptable program structures is crucial for youth with CeD.
- Prioritizing peer connections, flexible design, and community building can enhance engagement.
- Developed programs can support social connection, self-management, and psychosocial well-being in adolescents with CeD.
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