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N10 Living with and managing symptoms of fatigue, pain and urgency in IBD: an exploratory qualitative study

L. Dibley*1, V. Van Loo2, M. Artom3, B. Khoshaba2, L. Sweeney2, J. Syred2, S. Windgassen2, G. Moffatt2, A. Verjee4, The IBD-BOOST PPI team, C. Norton2

1University of Greenwich, Faculty of Education and Health, London, UK, 2King's College London, Florence Nightingale Faculty of Nursing and Midwifery, London, UK, 3King's College London, Institute of Psychiatry, London, UK, 4PPI Team Lead, London, UK


Background: as part of the IBD-BOOST study, we aimed to produce primary data to inform development of an online self-management intervention for symptoms of fatigue, pain, and urgency in inflammatory bowel disease (IBD).


Methods: using exploratory qualitative methods, we recruited people with IBD from clinic and community sources and conducted focus groups in different UK locations. Focus groups were facilitated by experienced qualitative researchers, assisted by observers, and recorded on a digital audio device. Following consent, participants were asked to share their experiences of living with symptoms of fatigue, pain, and/or urgency, and explain how they self-manage these symptoms. Recordings were transcribed by a professional transcriber. Using the Common Sense Model which proposes that illness perceptions directly influence coping strategies, which in turn influence outcomes, we created a coding framework and applied it over three rounds of thematic analysis. Eight patients were consulted to agree the final structure of data and themes.


Results: 25 participants (16 female; ages 23–58 years) each attended one of the five focus groups (N = 3, 7, 6, 6 and 3). Twelve had CD, 11 had UC and two had IBD-U. Duration of disease was three – 30 years. Three core themes emerged: (a) The Negative Impact of Symptoms: perceived causes and knock-on effects across symptoms, persistence and unpredictability of symptoms, effect on identity, and unwanted psychosocial emotional and intimate consequences; (b) Positively Taking Control: the different ways in which participants achieve control, their coping strategies and self-appraisal of their situation, the adaptations and changes they choose to make to manage these symptoms; (c) seeking and receiving support: the value of receiving understanding from friends and family, work managers and colleagues, and healthcare practitioners, the practices these people offer which are helpful, and impact on the person with IBD when symptom-related needs are not recognised. The persistent impact on physical and emotional well-being can be stark, forcing unwanted adjustments and limitations in working, social and intimate arenas of life. Uncertain and unpredictable symptoms are challenging. Managing diet, pacing oneself, accepting background levels of fatigue, pain and urgency, seeking support, exercising and attending to mental well-being, are all perceived to be helpful in self-managing symptoms.


Conclusion: Fatigue, pain, and urgency symptoms can persist for patients, either singly or in combination. Participants revealed several strategies for self-management, providing patient-focussed evidence to inform the development of an online intervention self-management programme.