(Can) Not talk about it – Urinary incontinence from the point of view of stroke survivors: A qualitative study

Purpose: The current study intends to gain an in-depth understanding of stroke survivors' lived experience of urinary incontinence and its treatment in an inpatient rehabilitation clinic. Methods: A qualitative approach was chosen. Semi-structured individual interviews with ten stroke survivors suffering from urinary incontinence were conducted in an inpatient rehabilitation clinic and analysed using qualitative content analysis with an inductive approach. Results: ‘(Can) not talk about it’ was identified as the first main category. The affected persons do not talk about urinary incontinence because they are ashamed. At the same time, no one asks them about this issue. Psychological strain is so high that patients feel the need to talk about incontinence, but from their point of view, conversations with nurses – if they indeed occur – are superficial or nurses do not listen. Therefore, patients' needs and concerns are not properly considered. ‘Trying to command incontinence’ was also identified as a main category. Participants reported that they try to command incontinence and to develop their own strategies in order to hide urinary incontinence and prevent shameful situations. However, this proved mostly unsuccessful and resulted in resignation to their condition. Conclusion: It is important to raise awareness within the treatment team of urinary incontinence in stroke survivors. Team members should be able to communicate about urinary incontinence in an open and empathic way. Obviously, there is great potential for supporting stroke survivors in dealing with incontinence.