This study characterized the explanatory models used by pediatric gastroenterologists when explaining inflammatory bowel disease (IBD) to children.

Why was this study done?

Doctors are responsible for describing diseases to children with Inflammatory Bowel Disease (IBD). Often, doctors use story-like language to describe how diseases work to their patients. These descriptions are referred to as “explanatory models”. How we talk to children about their disease impacts what children know and understand about their diseases and impacts children’s mental health as well as how well children adhere to their medications.

How was the study designed?

The purpose of this study was to identify what explanatory models pediatric gastroenterologists were using to describe IBD to their pediatric patients. We undertook hour-long interviews with 20 pediatric gastroenterologists. As part of the approval process, this study was reviewed by the ICN Research Committee. We recruited physicians to interview through the ICN community. Potential limitations of the study include all physicians interviewed participating in ICN, which means they may be more used to discussing the concepts we asked about. Also, we largely interviewed physicians from large pediatric hospitals, so the models they used may not represent those of pediatric gastroenterologists working in more rural or underserved areas.

What were the results?

This study showed us that physicians were using models to describe autoimmunity in IBD and inflammation in IBD. To describe autoimmunity, most physicians were using the defense and protection model, which describes the immune system as an army that attacks the body. Some physicians used the switch model, which describes the immune system as a light switch which is turned on in IBD and then cannot be turned off. To explain inflammation, physicians used the scratch and scrape model which relates a child’s inflammation inside their intestine to injuries on their skin. Other physicians used the bonfire model for inflammation, describing inflammation in IBD as a bonfire that needs to be put out using medications.

What does this mean for patients, families and clinicians?

Our findings show us that most physicians use war or battle metaphors to describe the immune system in IBD. However, rather than fighting a virus or a bacteria, however, the immune system is fighting the child’s body. We do not have any research on the impacts of using aggressive metaphors to describe autoimmunity to pediatric patients. Exploring how physicians describe disease to pediatric patients with IBD is an important venture to better understand how children internalize their understanding of their disease.

Study authors

Catalina Berenblum Tobi and Mara Buchbinder

Study stats

This study was published in December 2023. You can locate it on our website and online in Sage Journals

  • Study citation: Berenblum Tobi C, Buchbinder M. Physicians’ Explanatory Models of Pediatric Inflammatory Bowel Disease: A Qualitative Interview Study. Qualitative Health Research. 2023;0(0). doi:10.1177/10497323231218159
  • Study sharing: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (

🔎 This ICN Research Explained was prepared by: Catalina Berenblum Tobi, a 4th year University of North Carolina medical student and Mandy Fates, ICN Parent/Family Advisory Council
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