Experiences of transition from paediatric to adult urinary continence care

Background Healthcare transition can be complex and challenging for young people moving from a paediatric to an adult-focused healthcare setting. Suboptimal transition may lead to poor chronic disease management, psychological stress, and greater morbidity and mortality. Urinary incontinence carries a significant burden of disease and negatively impacts quality of life. This project aims to understand the lived experiences, views, and ideas of young people receiving urinary continence care in Australia, with a goal to characterise and improve their experience of transition to adult care. Methods Young people with urinary incontinence completed virtual semi-structured video interviews with or without their guardians present. Interviews were videotaped and transcribed in a de-identified manner and coded by two independent researchers via inductive thematic analysis. Results Saturation was reached after 12 interviews. There were seven male and five female participants aged between 13 and 21 years old. The interviews revealed four key themes: (1) feelings and emotions of young people towards their condition and transition, (2) relationship and communication with healthcare providers, (3) readiness for transition, and (4) existing barriers to successful transition. Conclusion Young people with urinary incontinence experience feelings of shame and embarrassment, and they often report late initiation, as well as lack of communication and handover, as barriers to successful transition to adult urinary continence care. Further research should aim to identify the underlying causes of these barriers and explore the role of dedicated transitional services to improve the experiences of young people with urinary incontinence.