A scoping review of the qualitative literature reporting experiences of living with a stoma for inflammatory bowel disease.

ABSTRACT

AIMS: Surgical treatment for inflammatory bowel disease (IBD) potentially includes stoma formation. Although positive clinical outcomes are widely reported, patients' responses to stoma surgery, including coming to terms with and adjusting to the stoma, vary widely. This scoping review charts the qualitative literature addressing the question What is known about any personal psychosocial and quality of life factors that inform adjustment to living well with an intestinal stoma for IBD? DESIGN: A scoping review methodology was employed. DATA SOURCES Searches of Scopus, Web of Science, CINAHL, Medline and PsycInfo in August 2023. REVIEW METHODS: Levac et al.'s (2010) methodology was followed. PRISMA-ScR guidelines were adhered to. RESULTS: Thirteen cross-sectional studies were included, involving a total of 142 participants. Four themes were identified (1) facilitative factors; (2) barriers to adjustment; (3) personal attributes; and (4) time and temporality. Data indicate that personal and psychological factors influence adjustment, but not how this occurs. Adjustment takes longer to achieve than is conventionally (clinically) expected. CONCLUSION: All available evidence is cross-sectional. The identified gap in the evidence is the notable lack of longitudinal research to assess, monitor and understand the complex process of adjustment in people with IBD having stoma-forming surgery. Detailed understanding of the process of adjustment would enable more targeted support for patients preparing for, and learning to live with, a stoma for IBD. IMPACT This paper highlights the need to understand the multiple personal and psychosocial factors that affect adjustment to life with a stoma and identifies that adjustment takes significantly longer than the few weeks required to become competent in managing the stoma. PATIENT OR PUBLIC CONTRIBUTION Not applicable.