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

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.

Conclusion: Participants experience numerous psychosocial challenges as they strive to manage their diet, noting gaps in support available from IBD practitioners. Participants made practical recommendations for healthcare system change to improve patient outcomes, highlighting the importance of sharing stories and collaboratively including patients in the development of new services and protocols. Authors recommend further research in this area to build a body of knowledge and support that helps IBD patients maintain hope while navigating challenges with food.

Patient or public contribution: The first four authors on this paper were the lead researchers in this study's design and analysis and identify as patients; they conducted the research with this identity at the forefront following a peer-to-peer research model. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process itself was co-lead and directed by other patient participants and consultants. Results and recommendations coming from this paper came directly from patient participants.