Physicians’ Explanatory Models of Pediatric Inflammatory Bowel Disease: A Qualitative Interview Study

Abstract

Explanatory models are culturally informed representations of illness that convey understandings of the etiology and expected course of disease. Substantial research has explored lay explanatory models, but examining physicians’ clinical explanatory models can also provide insight into patients’ understandings of illness because physicians are a foundational source of authoritative knowledge that shapes lay concepts of illness and disease. This study characterized the explanatory models used by pediatric gastroenterologists when explaining inflammatory bowel disease (IBD) to children. We conducted semi-structured qualitative interviews with 20 pediatric gastroenterologists across the United States about their clinical communication and explanatory models. We identified two primary explanatory models used to describe immune dysregulation in pediatric IBD: the defense and protection model, which characterizes the immune system as an army that erroneously sees the body as “non-self” and attacks it; and the switch model, which conceptualizes treatment as activating a switch that turns off a faulty immune response. We also identified two models used by some physicians to describe inflammation: the scratch and scrape model, which compares IBD inflammation to scratches or scrapes on the skin; and the bonfire model, which compares inflammation to a fire in need of extinguishing. While the use of militaristic metaphors is pervasive in medicine, describing autoimmunity as a battle against the self may lead children to perceive their body as the enemy. This may be compounded by describing the immune system as “confused” while noting its ongoing protective function. Use of these explanatory models may nevertheless improve patient disease-related knowledge.