Dibley, Lesley ORCID: 0000-0001-7964-7672 , Khoshoba, Bernadette, Artom, Micol, Van Loo, Victoria, Sweeney, Louise, Syred, Jonathan, Windgassen, Sula, Moffatt, Georgia and Norton, Christine (2020) Patient strategies for managing the vicious cycle of fatigue, pain, and urgency in inflammatory bowel disease: impact, planning and support. Digestive Diseases and Sciences, 66 (10). pp. 3330-3342. ISSN 0163-2116 (Print), 1573-2568 (Online) (doi:https://doi.org/10.1007/s10620-020-06698-1)

Preview

PDF (Author's Accepted Manuscript) 30025 DIBLEY_Patient_Strategies_For_Managing_The_Cycle_Of_Fatigue_Pain_And_Urgency_(AAM)_2020.pdf - Accepted Version Download (241kB) | Preview

Abstract

Background
Inflammatory bowel disease (IBD) causes inter-related symptoms of fatigue, pain and urgency which can persist in remission.

Aim
To understand how people with IBD experience and self-manage these symptoms and to inform the future development of an online self-management programme.

Methods
Using exploratory qualitative methods, we recruited participants from clinic and community settings. Focus groups, conducted across the UK, were audio-recorded and professionally transcribed. Transcripts were analysed over four rounds using framework analysis. Eight patients were consulted to agree the final structure of data and themes.

Results
Seven focus groups were held; five gave useable data. Twenty-six participants (15 female; ages 21–60 years; disease duration 2–40 years) with Crohn’s disease (n = 10), ulcerative colitis (n = 14) and IBD-unclassified (n = 2) attended one of these five focus groups. Three core themes emerged: The Negative Impact of Symptoms, Positively Taking Control and Seeking and Receiving Support. The persistent, often stark impact of multiple co-existing symptoms on physical and emotional wellbeing can force unwanted adjustments and limitations in working, social and intimate arenas of life. Unpredictable symptoms are challenging and impact each other in negative vicious cycles. Managing diet, pacing, accepting background levels of fatigue, pain and urgency, seeking support, exercising and attending to mental wellbeing, are all perceived as helpful in self-managing symptoms.

Conclusion
Fatigue, pain and urgency are troublesome for patients, especially in combination, suggesting that these should be addressed simultaneously by clinicians. Participants reported several strategies for self-management, providing patient-focused evidence to inform future development of a self-management intervention programme.

Item Type:	Article
Uncontrolled Keywords:	fatigue, fecal incontinence, inflammatory bowel disease, pain, qualitative, self-management, urgency
Subjects:	R Medicine > R Medicine (General)
Faculty / School / Research Centre / Research Group:	Faculty of Education, Health & Human Sciences Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development > Centre for Chronic Illness and Ageing
Last Modified:	08 Nov 2021 01:38
URI:	http://gala.gre.ac.uk/id/eprint/30025

Actions (login required)

View Item

Downloads