A participatory study of information and presentation priorities for a digital interface for bowel self-management

Abstract

Background Difficulty controlling or emptying the bowel is a common issue with devastating physical and mental health impacts. Digital technologies supporting bowel self-management remain limited. We are exploring a system combining an implanted sensor with a digital interface to support bowel self-management. This paper reports on the digital interface. Objectives To identify the information most valuable to adults living with bowel problems and the best ways to present it on the digital interface, informed by lived experience; secondarily, to gather their views on the sensor and implantation methods. Methods A participatory design approach was employed. Thirteen adults with IBD/IBS attended design sessions; five more with IBD/IBS and eight with other bowel problems attended evaluation sessions. Participants were primarily UK-based, female, and White. Design sessions explored interface priorities and lived experiences; evaluation sessions assessed usability and utility. Views on the sensor were gathered across both phases. Data were analysed using qualitative methods. Results Five themes were identified: balancing discretion, clarity, and stigma in presentation; balancing benefit and burden; encouraging engagement without exacerbating anxiety; supporting the move from data to information to knowledge; and supporting clinical communication and confidence. Ninety-two percent of participants were positive towards sensor implantation. Conclusions This study addresses a gap in the literature on digital interfaces for bowel self-management in combination with implantable sensors. It highlights faecal incontinence as a key patient concern, identifies priorities for information and presentation, and informs future sensor development. The work may have some limited applicability to other implantable/wearable sensors with digital interfaces.