Healthcare professionals’ priorities for training to identify and manage distress experienced by young people with a stoma due to inflammatory bowel disease: a consensus study using online nominal group technique

Problem

Young people, aged 16−35, who have a stoma due to inflammatory bowel disease (IBD), commonly experience distress related to body image concerns, sexual difficulties, reduced social functioning and lowered self-esteem. General Practitioners (GPs) are a first point of contact for addressing this distress; however, stoma-related distress may not be disclosed or discussed and/or is sub-optimally managed in clinical settings. Early and effective healthcare support may reduce the risk that the young person will develop depression. This study aimed to gain consensus among a multidisciplinary group of healthcare professionals (HCPs) on the priorities for training in the identification and management of distress in this population.

Approach

Two online consensus group meetings were carried out in June and July 2022, using Nominal Group Technique (NGT), a systematic approach to building consensus which follows a distinct set of stages.

Findings

Nineteen HCPs participated in one of two NGT meetings (group 1= 10 participants; group 2= 9): GPs, clinical psychologists, stoma care nurses, IBD nurses and gastroenterologists. Participants were located across England, with one IBD nurse based in the USA. Twenty-five ideas were generated by participants, 19 of which reached consensus of >80%, that is, a mean average 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, e.g. food and sleep hygiene; information about physical issues related to stoma surgery and understanding what is ‘normal’ in terms of function; opening and holding conversations about stoma-related distress; exploring with patients the role of family and peer support; considering the impact of different cultural views and beliefs on adaptation after stoma surgery; training in simple techniques for gauging the patient’s distress in the specific moment; having conversations about body image; and myth-busting of common fears patients may hold, for instance in relation to odour.

Consequences

A strong level of consensus was reached among HCPs for 19 topic areas relating to the identification and management of stoma-related distress. This reflects the varied needs that young people with a stoma have, indicating that training in a range of areas is required for HCPs to meet these needs. Findings have implications for improving healthcare provision for this group through raising awareness among HCPs of important areas to address in supporting young people with an IBD stoma, specifically in relation to their mental health needs. The findings will also directly inform the development of an information and training package for HCPs, to enhance the identification and management of stoma-related distress, that is being co-produced with young people with an IBD stoma and HCPs.