Gaining consensus: the challenges of living with a stoma and the impact of stoma leakage

Abstract

Background: People with a stoma face many unique challenges. Leakage is a significant one but is not sufficiently discussed within the wider area of health and social care. Aims: This study aimed to articulate and achieve consensus on the problems experienced by people with a stoma, particularly leakage, in the hope of encouraging conversations among patients, clinicians and policymakers on how to solve them. Methods: Output from a modified Delphi panel, consisting of patient groups, was used to create a set of calls to action, with a particular focus on the issue of leakage. Findings: Leakage has a large impact on daily life and can cause both physical and mental health difficulties. Peer support and specialist care can be offer considerable benefits in dealing with these. Conclusions: There are significant unmet needs for equitable access to specialist stoma care and peer support, as well as information provision for non-specialist healthcare providers. The calls to action should be implemented.