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Abstract Objectives Young people with a stoma due to inflammatory bowel disease (IBD) commonly experience distress; however, this is not always well managed in clinical settings. More effective support may/is likely to reduce the possibility of individuals experiencing sustained distress, which may engender depression or anxiety. This study aimed to gain consensus among a multidisciplinary group of healthcare professionals (HCPs) on priorities for training in the identification and management of distress in this population. One of the authors is a young person with a stoma. Design Participants were recruited through Twitter (X) and the researchers’ clinical/research contacts. Two consensus group meetings were conducted using Nominal Group Technique, involving participants generating, discussing and rating on a Likert scale, topics for inclusion in an HCP training package. Setting Online video conferencing. Participants were located across England, with one based in the USA. Participants Nineteen HCPs participated: three general practitioners, three stoma nurses, two IBD nurses, nine clinical psychologists and two gastroenterologists. Results Twenty-five topics were generated by participants; 19 reached consensus of ≥80%, that is, a mean of ≥5.6 on a 7-point Likert scale. These included: recognising and validating different levels of, and variation in, distress; tackling stigma and normalising having a stoma; everyday practicalities of stoma management, including food and sleep; opening and holding conversations about stoma-related distress; considering the impact of different cultural beliefs on adaptation after stoma surgery; training in simple techniques for gauging the patient’s distress during clinical encounters; having conversations about body image; and myth-busting common fears, such as odour. Conclusions This study is the first to identify HCP training priorities for managing stoma-related distress in young people. Consensus was reached for 19 topics, reflecting the varied needs of young people with a stoma. Findings will inform development of a training package for HCPs treating young people with IBD and a stoma.

More information Original publication

DOI

https://doi.org/10.1136/bmjopen-2023-072360

Type

Journal article

Journal

BMJ Open

Issue

BMJ Open 2023;13:e072360

Publisher

BMJ Publishing Group Ltd

Publication Date

29/11/2024

Addresses

This work was funded by the National Institute for Health Research (NIHR) School for Primary Care Research (SPCR) grant number: 516.