Perceptions of individuals who undertake clean intermittent self-catheterisation and their experiences with urinary tract infections: A qualitative study

Abstract

Clean intermittent self-catheterisation (CISC) is the gold standard for managing urinary retention, yet long-term use is associated with burdens. Catheter-associated urinary tract infections (CAUTIs) affect many individuals performing CISC, yet Australian qualitative perspectives on lived experiences with CISC and infection remain scarce. We aimed to explore the personal experiences of individuals undertaking intermittent catheterisation and to understand their experiences with CAUTIs. Semi-structured interviews were conducted with 14 participants recruited from community-based settings across Australia as part of a larger randomised controlled trial. Interviews were conducted online via Zoom in January 2025, audio-recorded, and transcribed verbatim. Data were analysed using Braun and Clarke's six-phase reflexive thematic analysis. The sample comprised nine females and five males, with a median age of 60 years and a median self-catheterisation duration of 4.2 years. Four overarching themes were identified: (i) physical and psychological impact, including emotional exhaustion, embarrassment, and anxiety associated with recurrent urinary tract infections (UTIs) and the daily demands of CISC; (ii) social and practical challenges, encompassing avoidance of social activities, inadequate public facilities, and the burden of carrying equipment; (iii) treatment experiences and systemic barriers, including delays in accessing general practitioners, concerns regarding antimicrobial resistance, and self-medication practices; and (iv) support, funding, and continuity of care, reflecting the value of continence nursing support alongside anxieties surrounding National Disability Insurance Scheme (NDIS) funding sustainability. Recurrent CAUTIs and CISC impose a profound and multidimensional burden on individuals' physical, emotional and psychological wellbeing.