Dibley, Lesley ORCID: 0000-0001-7964-7672 , Czuber-Dochan, Wladyslawa, Wade, Tiffany, Duncan, Julie, Burch, Jennie, Warusavitarne, Janindra, Norton, Christine, Artom, Micol, O'Sullivan, Liam, Verjee, Azmina and Cann, Denise (2018) Patient decision-making about emergency and planned stoma surgery for IBD: a qualitative exploration of patient and clinician perspectives. Inflammatory Bowel Diseases, 24 (2). pp. 235-246. ISSN 1078-0998 (Print), 1536-4844 (Online) (doi:https://doi.org/10.1093/ibd/izx043)

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Abstract

Background:
Many IBD patients worry about stoma forming surgery (SFS), sometimes enduring poor bowel-related quality of life to avoid it. Anticipation of SFS and whether expectations match experience is under-reported. This qualitative study explored influences on patients’ SFS decision-making, and compared pre-operative concerns with post-operative outcomes.

Methods:
We purposively recruited participants with IBD from UK hospital outpatient and community sources, and IBD clinicians from public hospitals. Four focus groups and 29 semi-structured patient participant interviews, and 18 clinician interviews were audio recorded, transcribed, and analysed thematically. Participants had a current temporary, recently-reversed, or permanent stoma, or were stoma naïve.

Results:
Four themes emerged: Pre-operative concerns and expectations, Patient decision-making, Surgery and recovery, and Long-term outcomes. Participants and clinicians agreed about most pre-operative concerns, that outcomes were often better than expected, and support from others with a stoma is beneficial. Patient decision-making involves multiple factors, including disease status. Some clinicians avoid discussing SFS, and the phrase ‘last resort’ can bias patient perceptions; others recommend early discussion, increasing dialogue when medical management becomes ineffective. The post-operative period is particularly challenging for patients. Stoma acceptance is influenced by personal perceptions and pre- and post-operative clinical and social support.

Conclusion:
Patients need balanced information on all treatment options, including surgery, from an early stage. Early multi-disciplinary team dialogue about SFS, and contact with others living well with a stoma, could enable informed decision-making. Life with a stoma is often better than anticipated, improving quality of life and control. Ongoing specialist nursing support aids recovery and adjustment.

Item Type:	Article
Additional Information:	Available for free - funded in full by Crohn’s & Colitis UK.
Uncontrolled Keywords:	decision-making; inflammatory bowel disease; qualitative; stoma; surgery
Faculty / School / Research Centre / Research Group:	Faculty of Education, Health & Human Sciences Faculty of Education, Health & Human Sciences > School of Health Sciences (HEA) Faculty of Education, Health & Human Sciences > Health & Society Research Group
Last Modified:	15 Apr 2020 15:59
URI:	http://gala.gre.ac.uk/id/eprint/17853

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