What do people with inflammatory bowel disease want to know about diet? The dietary information needs of people with inflammatory bowel disease and perceptions of healthcare providers

BackgroundInflammatory bowel disease (IBD) is an incurable illness of the gastrointestinal tract. Its relapsing-remitting nature negatively impacts physical health and quality of life. Food and eating are key concerns for people with this illness. To provide holistic person-centred care, healthcare providers (HCPs) need to meet patients' dietary information needs. However, there is a paucity of literature describing these in any meaningful detail. The present study aimed to explore the perceived dietary information needs of individuals with IBD, the perceptions of HCPs and enablers and barriers to communication.MethodsOnline and face-to-face semi-structured interviews with 13 HCPs and 29 people with IBD were conducted. The framework method aided thematic analysis of de-identified interview recordings.ResultsThe cyclical nature of IBD contextualised the five themes. Both individuals with IBD and HCPs articulated similar ideas viewed from different perspectives: (1) living with IBD is exasperating and unique to the individual; (2) individuals with IBD desire dietary information; (3) diet manipulation is used to exert control on a disease with unpredictable nature; (4) people with IBD and HCPs have different views on the role of diet; and (5) doctors are perceived as gatekeepers to accessing dietetics care.ConclusionsA lack of dietary guidance at diagnosis negatively impacts the patient's journey with food and eating. The present study supports a paradigm shift towards holistic person-centred care for consistent access to dietetics services to meet the needs of people with IBD. The key findings from the interviews highlight the need to account for the dietary information needs of individuals with inflammatory bowel disease (IBD) from diagnosis. Increased access to evidence-based dietary information and to specialised dietetics services can enhance self-management, improve health outcomes and increase satisfaction with the care received. image Dietary information needs appear to be influenced by the stage of Inflammatory Bowel Disease (IBD). The journey of IBD is lonely and fraught with uncertainty. Lack of dietary guidance from diagnosis may partly influence information seeking and adoption of dietary restrictions. Dietary manipulation provides a perceived sense of control.