Abstract
BACKGROUND: Inflammatory bowel disease is complex, heterogeneous and chronic, necessitating individualized and holistic long-term care and self-management. While dietary therapy can induce remission in some cases, no dietary guidelines currently exist for maintaining remission. Despite remission, gastrointestinal symptoms can persist. This, together with perceived lack of guidance from healthcare providers are sources of frustration. To bridge the dietary information gap, many individuals may turn to social media, where extensive discussions occur. This study aimed to quantify, explore and describe the nutrition-related information needs and experiences of this cohort by analysing comments on social media. METHODS: This study used social listening to examine online comments from select Facebook groups. Content and inductive thematic analysis were used to quantify, explore and describe deidentified comments. Chat Generative Pre-Trained Transformer aided content analysis. Topics of interest were represented as percentages. RESULTS: Moderate agreement (75%) existed between manual and automated content analysis. Of the 11,945 comments, 37.5% were diet-related. Thematic analysis identified five interrelated themes: (1) desire for support and connection, (2) exasperation and desire for information, (3) open to considering advice from non-experts, (4) a desire for food to be thy medicine and (5) Inflammatory Bowel Disease holds me back. CONCLUSION: Facebook groups provide access to information and connection, compensating for the perceived lack of timely and ongoing access to a knowledgeable and empathetic multidisciplinary care team. Dietitians caring for individuals with IBD should ensure the advice provided is practical and that barriers to implementation of advice are addressed to facilitate uptake.