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Developing an online programme for self-management of fatigue, pain and urgency in inflammatory bowel disease: patients’ needs and wants

Developing an online programme for self-management of fatigue, pain and urgency in inflammatory bowel disease: patients’ needs and wants

Fawson, Sophie, Dibley, Lesley ORCID: 0000-0001-7964-7672, Smith, Kaylee, Batista, Joanna, Artom, Micol, Windgassen, Sula, Syred, Jonathan, Moss-Morris, Rona and Norton, Christine (2021) Developing an online programme for self-management of fatigue, pain and urgency in inflammatory bowel disease: patients’ needs and wants. Digestive Diseases and Sciences. ISSN 0163-2116 (Print), 1573-2568 (Online) (In Press) (doi:https://doi.org/10.1007/s10620-021-07109-9)

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Abstract

Background
Inflammatory Bowel Disease (IBD) is a lifelong relapsing-remitting condition; characterised by troublesome symptoms including fatigue, pain and bowel urgency. These symptoms can persist even in clinical remission, and have a debilitating impact on social, work-related and intimate domains of life. Symptom self-management can be challenging for some patients, who could potentially benefit from an online self-management tool.

Aims
We aimed to understand patients’ symptom self-management strategies and preferred design for a future online symptom self-management intervention.

Methods
Using exploratory qualitative methods, we conducted focus groups and interviews with 40 individuals with IBD recruited from UK clinic and community sources; data were collected using a digital audio recorder, and transcribed and anonymised by a third party (professional) transcriber. We used framework analysis for focus group data, and thematic analysis for interview data.

Results
The data provided three core themes: Ways of coping; Intervention functionality; and Intervention content. Participants attempt to manage all three symptoms simultaneously, recognising the combined influence of factors such as food, drink, stress, and exercise on all symptoms. They wanted an accessible online intervention functioning across several platforms, with symptom and medication management, and activity-tracking features.

Conclusions
Patients reported numerous ways of self-managing symptoms of fatigue, pain and urgency/incontinence related to IBD and expressed their needs for content, design and functionality of the proposed intervention. Based on this, and existing intervention development literature, the IBD-BOOST online self-management intervention has now been developed and is undergoing testing.

Item Type: Article
Uncontrolled Keywords: fatigue, inflammatory bowel disease, online, pain, self-management, urgency
Subjects: R Medicine > RT Nursing
Faculty / Department / Research Group: Faculty of Education, Health & Human Sciences
Faculty of Education, Health & Human Sciences > Department of Adult Nursing & Paramedic Science
Last Modified: 06 Jul 2021 10:16
Selected for GREAT 2016: None
Selected for GREAT 2017: None
Selected for GREAT 2018: None
Selected for GREAT 2019: None
Selected for REF2021: None
URI: http://gala.gre.ac.uk/id/eprint/33036

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