Exploring factors related to psychological distress in inflammatory bowel disease: a qualitative study

Abstract

Background: Inflammatory Bowel Disease (IBD) is lifelong autoimmune condition causing inflammation of the digestive system resulting in sickness, diarrhea, weight loss, abdominal pain and fatigue among others. Depression and anxiety are typically high at 21% and 41% respectively. However, most IBD services do not have access to psychological support or dedicated resources for distress. This study aimed to identify areas of distress in IBD to inform a guided self-management intervention. Methods: Semi-structured interviews were carried out with 29 people with IBD (pwIBD) and twelve healthcare professionals. Interviews were audio-recorded and transcribed verbatim. Data were analysed using thematic analysis with elements of grounded theory. Findings: A model of factors identified by pwIBD contributing to distress was developed. Themes included; symptoms which can be embarrassing and uncontrollable during flares; unpredictability and progression of IBD, creating uncertainty for the future; social factors including lack of understanding and the negative impact on social relationships; navigating the healthcare system; medical procedures which can be unpleasant and invasive. Most themes were also recognised as being potential buffers to distress such as having good social support and healthcare staff. Healthcare professionals acknowledged their role in holistic care but cited a lack of knowledge and resources to adequately promote psychological support. Discussion: PwIBD identified areas acting as potential promoters and buffers to distress in IBD which were mostly supported by healthcare professionals. The model developed has been used to inform the content of a self-management intervention targeting psychological distress.