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

Problem

Young people, aged 16-35, who have a stoma due to inflammatory bowel disease (IBD) commonly experience distress, due 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, it has been found that stoma-related distress is commonly undetected and/or sub-optimally managed in this group. Interventions that support young people to self-manage distress may be beneficial. To inform a future intervention, this study aimed to gain consensus among young people with an IBD stoma on their priorities for the self-management of stoma-related distress.

Approach

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

Findings

Nineteen young people with a stoma due to IBD took part in one of two online NGT meetings (group 1= 10 participants; group 2= 9). Fifteen participants were female and four male, aged between 19 and 33, located throughout England, Scotland and Northern Ireland. Eleven participants had a stoma as a result of Ulcerative Colitis (UC), seven due to Crohn’s Disease and one due to indeterminate IBD. Twenty-nine topics were generated by participants, seven of which reached consensus of >80%, that is, a mean average 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.

Consequences

Findings extend previous research on young people’s experiences of stoma surgery, by successfully generating consensus on priorities for managing distress related to surgery and living with a stoma. Priorities were identified that have not previously been reported in the literature, including the need for information about fertility and pregnancy. Increasing awareness among primary care professionals of these priorities can improve the identification and management of distress in this population. This may reduce the possibility that distress will escalate into co-morbid depression and can potentially have an impact in reducing antidepressant prescribing for this group. Findings will also inform a digital self-management resource that will be co-produced with young people with an IBD stoma and healthcare professionals, which has the potential to reduce distress in young people with an IBD stoma, and improve their quality of life and clinical outcomes.