The experience of urinary incontinence in stroke survivors: a follow-up qualitative study

No previous qualitative exploration of urinary incontinence (UI) or post-stroke urinary incontinence (PSUI) has been undertaken in an Australian population. The purpose of this study is to explore the experiences of community-dwelling stroke survivors who were living with UI/PSUI and understand how context shaped those experiences. A pragmatic approach using thematic analysis was employed for this study. Four themes emerged from the data: "I've got to go": onset and daily experience of UI; "No one ever mentioned it": lack of advice and information from the health system; "You can't enjoy something if you've got to go the toilet": experience of occupational restrictions; and "It's just a matter of planning": management strategies. UI continued well beyond discharge and was shaped by limited advice, distress, and role loss. Occupational therapists are encouraged to engage in assessment, management, and treatment of UI, including the provision of education that promotes continence, attenuates negative experiences, and enhances community participation.