Metadata record for data supporting 'A Participatory Study of Information and Presentation Priorities for a Digital Interface for Bowel Self-Management'

This is a metadata record for data supporting 'A Participatory Study of Information and Presentation Priorities for a Digital Interface for Bowel Self-Management'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 developing a system combining an implanted sensor with a digital interface to support bowel self-management. This paper reports on the digital interface. Purpose: The study explored participants’ lived experiences of bowel problems, identified valuable information for patients and the best ways to present this information on the digital interface, and gathered participants’ views on the sensor and implantation methods. Methods: A participatory design approach was employed, using prototyping to embody participant voices and bring tangibility to ideas. Twenty-six participants took part in design and evaluation sessions. Design sessions explored lived experiences and interface priorities; evaluation sessions assessed the usability and utility of the digital interface. Views on the sensor were gathered across both phases. Data were analysed using affinity diagramming and inductive reflexive thematic analysis. 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. Almost all 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 bowel incontinence as a key patient concern, identifies priorities for information and presentation, and informs future sensor development. The work may also transfer to other implantable or wearable sensors with digital interfacesFunding information: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by the Engineering and Physical Sciences Research Council (EPSRC), part of UK Research and Innovation (UKRI). Grant number: EP/W003627/1.Study population: 26 participants.Study methods: Participatory design, prototyping, evaluation sessions, thematic analysis.Variables or measures: Lived experience narratives, usability assessments, views on implantation.Data type: Qualitative transcripts, thematic codes.