Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Mar 28, 2025
Date Accepted: Jun 11, 2025
Social Media as an Inflammatory Bowel Disease Self-Management Tool: A Qualitative Analysis of Reddit
ABSTRACT
Background:
Given the widespread discussion of inflammatory bowel disease (IBD) related topics on social media, these platforms play an important role in increasing our understanding of the needs, preferences, and experiences of patients living with IBD.
Objective:
To develop an in-depth understanding of Reddit social media discussions related to individuals’ experiences and perspectives living with and managing inflammatory bowel disease(IBD) to identify patients’ needs.
Methods:
We identified threads on the r/IBD, r/Ulcerative Colitis, and r/CrohnsDisease subreddits between April 2022 and April 2024 using a priori selected keywords to identify IBD-related experiences, perceptions, and needs. We utilized rapid qualitative analysis using pre-selected keywords(deductive) followed by further domain development(inductive) to generate a broad understanding of Reddit discussions related to living with IBD.
Results:
We identified 659 posts comprised of 207 (31.4%) original and 452 (68.6%) reply posts related to living with IBD. Findings highlighted that people utilize Reddit to seek knowledge, advice, empathy, and validation as well as to share experiences in five key areas related to: (1)symptoms as a major burden of living with IBD; (2)experiences with medications and concerns about treatment choices; (3)healthcare-related challenges; (4)dietary regimens and dietary guidance for handling symptoms and overall treatment; and (5)negative impact of IBD on mental health.
Conclusions:
Use of social media as an avenue for patients with IBD to gain knowledge, empathy, and support suggests that there are critical gaps in the care patients receive through established clinical practice. While social media platforms can provide a platform for patients to share experiences and build community, study findings should also inform future efforts to address identified gaps in care including the development of interventions to assist patients in managing their symptoms, diet, medications, healthcare, and mental health concerns. Clinical Trial: N/A
Citation
Request queued. Please wait while the file is being generated. It may take some time.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.