'Eating is like experiencing a gamble': A qualitative study exploring the dietary decision-making process in adults with inflammatory bowel disease.

BACKGROUND: For adults with inflammatory bowel disease (IBD), they experience many challenges in dietary decision-making. Thus, this study examined the perspective and experiences of adults with IBD in dietary decision-making.

OBJECTIVE: This study aimed to explore the perception and consideration of people with IBD in their daily dietary decisions through monitoring, interpretation and action during the decision-making process.

DESIGN: A qualitative study of individuals affected by IBD was conducted through semistructured interviews.

RESULTS: Twenty patients were recruited from four tertiary hospitals in Nanjing, China, and each participant completed a semistructured interview. The majority of participants reported on the process and experience of dietary decision-making. Key themes were categorised into three stages: (1) assessing needs, preferences and food cues (monitor); (2) moving from experience to expertise (interpret) and (3) balancing expectations amidst limitations (act). The majority of participants reported that their decisions were shaped by assessing current disease status and food cues. Those interviewed with IBD were willing to make tradeoffs for bowel stability, but their decisions were also influenced by past dietary experiences and traditional Chinese beliefs. The lack of awareness of dietary guidelines was a significant barrier to healthy eating decisions. Positive or negative feelings accompanied dietary decisions.

CONCLUSION: Although most people with IBD change their diet after diagnosis, the changes made are often inconsistent with existing dietary recommendations. Several factors can influence the dietary decision-making process. This study will help assess the experiences of people with IBD in dietary decision-making to encourage the formation of targeted dietary health and well-being interventions. Knowledge of nutrition and diet should be provided in education and training programmes for IBD management.

PATIENT OR PUBLIC CONTRIBUTION: The first three authors of this paper were the lead researchers in this study's design. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process was co-lead and directed by other patient participants and consultants. The results of this paper were directly obtained from patient participants.