Disclosing inflammatory bowel disease: A systematic review and meta-synthesis exploring the experience of, and barriers and facilitators to, self-disclosure

Due to its invisible nature, individuals must make decisions around self-disclosing Inflammatory Bowel Disease (IBD). Existing reviews have explored stigma as a barrier to disclosing IBD; however, other factors potentially affecting disclosure decisions have not been recently reviewed. The current review sought to synthesise qualitative papers exploring the experiences of disclosure, and identify facilitators and barriers to disclosure, within IBD. A systematic search identified 34 journal articles, comprising 1,004 participants. Following critical appraisal, a thematic meta-synthesis was completed. (PROSPERO registration ID CRD42023481441). A total of six main themes relating to self-disclosure were identified: it’s a stigmatised illness; a wish to conceal; difficulties discussing IBD; a need to disclose; balancing the need to disclose and the reluctance to disclose; and varied consequences to disclosure. Overall, the included studies were adequate quality; however, weaknesses in reflexivity were observed across a high proportion. This review highlights the complexity of disclosure decisions and describes how personal beliefs, social contexts, and previous experiences can influence these. Potential clinical implications, the impact for public health services, and the need for future research are discussed.