Young people’s priorities for the self-management of distress after stoma surgery due to inflammatory bowel disease: a consensus study using online nominal group technique

Benjamin Saunders*, Kay Polidano, Lucy Bray, Tamsin Fisher, Nadia Corp, Megan McDermott‐Hughes, Adam D. Farmer, Beth Morris, Sahara Fleetwood‐Beresford, Carolyn A. Chew‐Graham

*Corresponding author for this work

Research output: Contribution to journalArticle (journal)peer-review

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Abstract

Abstract
Introduction: The aim of this study was to gain consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self-management of stoma-related distress. The current identification and management of distress in young people with a stoma is often sub-optimal in clinical settings and there is a need for improved support resources.
Methods: Two consensus group meetings were carried out via online video conferencing, using Nominal Group Technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self-management intervention.
Results: Nineteen young people, aged 19-33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty-nine topics were generated by participants, seven of which reached consensus of >80%, that is, a mean of >5.6 on a 7-point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/ addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma ‘hacks’, e.g. useful everyday tips regarding clothing, making bag changes easier etc.; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey.
Conclusions: Findings extend previous research on young people’s experiences of stoma surgery, by generating consensus on young peoples’ priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self-management resource for young people with an IBD stoma and have relevance for the clinical management of stoma-related distress in this population.
Original languageEnglish
JournalHealth Expectations
Volume27
Issue number2
Early online date10 Mar 2024
DOIs
Publication statusPublished - Apr 2024

Keywords

  • nominal group technique
  • young people
  • inflammatory bowel disease
  • distress
  • stoma surgery
  • self‐management

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