Speaking Stoma: Creating a Communication Guide for People With an Ostomy

An ostomy is a life-changing procedure. Individuals who have ostomy surgery must adjust to changes post-operation, some of which involve changes to communication and managing social situations. The purpose of this project was to create an evidence-based communication guide for people with ostomies while transitioning to life after surgery and serve as a reference for the creation of communication guides for similar chronic illnesses. Emphasizing co-production, the first stage of the project, referred to as Pre-Design, included a needs assessment through qualitative interviews with (n = 27) individuals who have had an ostomy for at least a year. In the second stage of the project, Co-Design, our team used information gathered from the interviews with participants to create a rough draft of our communication guide. In the last stage, called Post-Design, we invited seven participants from the Pre-Design stage and recruited eight new participants (n = 15) to take part in both interviews and focus groups to evaluate the proposed communication guide. We reflect on both the strengths and weaknesses of the proposed communication guide based on feedback gathered from ostomates, followed by a discussion of the benefits of incorporating and applying this guide into practice. Results suggest that there are benefits to co-production as a method for healthcare delivery and multiple needs for guidance related to salient social situations for people with ostomies. These results can be applied to create evidence-based communication guidance for other relevant health contexts.