Irritable bowel syndrome in inflammatory bowel disease: Distinct, intertwined, or unhelpful? Views and experiences of patients

TY - JOUR

T1 - Irritable bowel syndrome in inflammatory bowel disease: Distinct, intertwined, or unhelpful? Views and experiences of patients

AU - Huisman, Danielle

AU - Sweeney, Louise

AU - Bannister, Kirsty

AU - Moss-Morris, Rona

N1 - Funding Information: This study represents independent research funded by the National Institute for Health Research (NIHR) Maudsley Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King?s College London in the form of a PhD Studentship for DH. RMM and KB are also part funded by the National Institute for Health Research (NIHR) Maudsley Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King?s College London. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care;NIHR Maudsley Biomedical Research Centre; We would like to thank the participants to our study for giving us their time and for being so open during the interviews. Another thank you should be directed to Crohn?s & Colitis UK for helping in the dissemination of our study and helping to recruit participants. Finally, we would like to thank Ms Lara Tosunlar, MSc, and Ms Erin Walker, PhD, for their input at the start of this study. Publisher Copyright: © 2022 The Author(s). This open access article is distributed under a Creative Commons Attribution (CC-BY) 4.0 license.

PY - 2022/3/20

Y1 - 2022/3/20

N2 - The aim of the study was to explore beliefs about pain and related coping strategies of individuals experiencing abdominal pain during remitted inflammatory bowel disease (IBD), and their perception of irritable bowel syndrome (IBS) in the context of IBD. In-depth semi-structured interviews were conducted with 23 participants who self-reported experiences of abdominal pain during remitted IBD. The study was embedded in the constructivism tradition and reflexive thematic analysis was used to analyse the interviews. Results encompass 1) How IBS is perceived; 2) How individuals monitor symptoms to distinguish active from quiescent IBD; 3) Coping strategies employed to navigate the pain; 4)How manageability of pain guides the distinction between active and quiescent disease; v. How context influences pain interpretation and management; 5) What role illness history and health literacy play in the meaning of ongoing pain. The IBS label was perceived by some as invalidating, although it helped some people to worry less about ongoing pain and symptoms during remitted IBD. However, even for the latter individuals, IBS did not bring a clear understanding of painful symptoms. Participants’ responses highlight a need for explanations that incorporate both the complexity of IBD and underlying causes of ongoing pain during remission. Communication would benefit from the appreciation of pain (and symptoms) in the wider context of illness history and health literacy.

AB - The aim of the study was to explore beliefs about pain and related coping strategies of individuals experiencing abdominal pain during remitted inflammatory bowel disease (IBD), and their perception of irritable bowel syndrome (IBS) in the context of IBD. In-depth semi-structured interviews were conducted with 23 participants who self-reported experiences of abdominal pain during remitted IBD. The study was embedded in the constructivism tradition and reflexive thematic analysis was used to analyse the interviews. Results encompass 1) How IBS is perceived; 2) How individuals monitor symptoms to distinguish active from quiescent IBD; 3) Coping strategies employed to navigate the pain; 4)How manageability of pain guides the distinction between active and quiescent disease; v. How context influences pain interpretation and management; 5) What role illness history and health literacy play in the meaning of ongoing pain. The IBS label was perceived by some as invalidating, although it helped some people to worry less about ongoing pain and symptoms during remitted IBD. However, even for the latter individuals, IBS did not bring a clear understanding of painful symptoms. Participants’ responses highlight a need for explanations that incorporate both the complexity of IBD and underlying causes of ongoing pain during remission. Communication would benefit from the appreciation of pain (and symptoms) in the wider context of illness history and health literacy.

KW - Inflammatory Bowel Disease (IBD)

KW - Irritable Bowel Disease (IBS)

KW - abdominal pain

KW - remission

KW - qualitative research

KW - thematic analysis

UR - http://www.scopus.com/inward/record.url?scp=85126819044&partnerID=8YFLogxK

U2 - 10.1080/23311908.2022.2050063

DO - 10.1080/23311908.2022.2050063

M3 - Article

SN - 2331-1908

VL - 9

JO - Cogent Psychology

JF - Cogent Psychology

IS - 1

M1 - 2050063

ER -