A patient‐led, peer‐to‐peer qualitative study on the psychosocial relationship between young adults with inflammatory bowel disease and food

Abstract

Background: Inflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negatively affect the enjoyment of food and engagement in social and cultural gatherings. Such experiences may promote psychosocial challenges, an aspect of IBD often overlooked and under-supported in clinical settings and research.Objectives: This study explored the psychosocial experiences that young adults with IBD have with food via a qualitative patient-led research process.Methods: Trained patient researchers conducted this study by engaging peers via semi-structured interviews and focus groups in a three-step co-design process.Participants (n = 9) identified the research topic (SET), explored the topic and identified emerging themes (COLLECT), refined themes and made recommendations for healthcare system change (REFLECT).Results: Themes that emerged included: 'Experimenting with Food', 'Evolution Over Time', 'Diet Changes are Emotional' and 'Role of Stigma'. Participants identified the significance and frustrations of repeated testing and experimenting with food compatibility, and noted nuances in food relationships as they gain knowledge and experience over time. They emphasized the importance of maintaining a sense of hope throughout and wished to impart this to newly diagnosed patients.

Exploring disease-related and treatment-related issues and concerns experienced by adults with spondyloarthritis, inflammatory bowel disease and psoriasis to identify unmet needs: a qualitative clinical concept mapping study

“…The disease-specific concepts in this study (figures 2 and 3) are overall consistent with what has been described in the literature [15][16][17][18] for the past decades. Although these are still very important to consider, they should not exclude attention to the generic concepts; rather an add-on.…”

Experience of diet in patients with inflammatory bowel disease: A thematic synthesis of qualitative studies

“…Some patients have expressed that they can reduce a series of reactions caused by eating and relieve symptoms during a flare by controlling their intake of certain foods (Nowlin et al., 2021). Since everyone reacts differently to food, they have to constantly experiment with food to control their symptoms and to make themselves feel well (Czuber‐Dochan et al., 2020; Rines et al., 2022; Zhou et al., 2014).…”

“…They pay careful attention to what they eat and plan ahead for diet-related events, which can be frustrating and painful in the long run (Palant et al, 2015;Rines et al, 2022;Zhou et al, 2014).…”

“…'I got zero support from my gastroenterologist and that's when I knew I had to do my own research' (Rines et al, 2022). (Zhou et al, 2014).…”

Food-Related Behavioral Patterns in Patients with Inflammatory Bowel Diseases: The Role of Food Involvement and Health Engagement

“…Frustration, distress, and feelings of deviating from normalcy may contribute to dysregulated food behaviors aimed at alleviating negative emotional states [ 22 ]. These coping mechanisms may remarkably influence dietary choices, with certain foods sought for comfort during distress or negative moods, establishing a link between emotional well-being and consumption patterns [ 23 ]. The regulatory role of food on mood is also supported by evidence pointing to psychological, hedonistic, and neurochemical pathways that facilitate emotional eating [ 24 , 25 ].…”