Self-disclosure and disordered eating in inflammatory bowl disease (IBD)

Introduction: As Inflammatory Bowel Disease (IBD) is an invisible illness, individuals must make decisions around self-disclosure. Existing reviews have identified stigma as a barrier to disclosing IBD, however, other factors potentially affecting disclosure decisions have not been reviewed. The current review sought to synthesise qualitative papers exploring the experiences of disclosure, and identify facilitators and barriers to disclosure, within IBD. Methods: A systematic review across five databases was completed. In total 1487 papers were identified, with 34 (comprising 1004 participants) being included in analysis. Following critical appraisal, a thematic meta-synthesis was completed. This review was registered with The International Prospective Register of Systematic Reviews (PROSPERO; registration ID CRD42023481441). Results: A total of five main themes were identified: It’s an invisible, stigmatized illness; Reluctance to disclose; A need to disclose; Balancing the need to disclose and the reluctance to disclose; and Varied consequences to disclosure. Conclusions: This review synthesised the varying experiences of disclosures for individuals with IBD and highlighted the complexity of disclosure decisions, with these decisions being influenced by personal beliefs, social contexts, and previous experiences. In support of previous reviews, individuals identified the role of stigma in preventing self-disclosures. Potential clinical implications, the impact for public health services, and the need for future research is discussed.