Study design, materials and methods
In-depth, face to face individual interviews were undertaken with 21 stroke survivors who were living at home. Following informed consent to participate the interview was conducted and audio-recorded at a time and place of the stroke survivor’s choice. A semi-structured topic guide was used to ensure all areas of interest were explored in the conversation-style interview. Stroke survivors were asked to describe bladder symptoms experienced after stroke and the impact of bladder problems on the stroke survivor and their family. Opinions were sought on the experience of self-managing bladder symptoms and anticipated future needs. Interviews were transcribed verbatim for analysis and a framework analysis  was completed by two researchers using a pre-determined analytic matrix based on the topic areas. Emerging themes were agreed by the two researcher, with a third researcher arbitrating any discrepancies.
A total of 21 interviews was completed with male stroke survivors (n=10) and female stroke survivors (n=11). Ages ranged from 50 to 79 years; time since stroke was < 1 year (n=8), 1-2 years (n=4), 2-5 years (n=2) and >5 years (n=7). 16 of the 21 participants said they had no bladder problems prior to stroke. 2 male participants had previous prostate problems and another 'had a weak bladder'; 2 female participants had prolapse & stress incontinence.
Four themes emerged during the framework analysis:
i) Stroke causes significant changes in bladder function
All stroke survivors interviewed described significant changes in their bladder sensation and functioning which had occurred following the stroke event. The most commonly described urinary symptoms were increased frequency and urgency and a number of respondents (n=13) reported experiencing urinary leakage associated with the urgency. For many, significant sleep disruption was noted as a result of new night-time frequency, which then impacted on daytime alertness and engagement with activities.
ii) ‘It’s embarrassing’
Bladder issues caused embarrassment for all and provoked worry and anxiety in stroke survivors. Stroke survivors described being particularly concerned about potential or actual leakage occurring and were also worried that they might smell of urine. Several stroke survivors felt that there was no consideration given by stroke specialist staff to the impact of stroke on the bladder and that bladder dysfunction would only be discussed if it was first raised by the patient. As embarrassment about bladder dysfunction was universal this was seen as a considerable barrier to accessing appropriate treatment or support. It was suggested that healthcare staff, in particular nurses, should ask specifically about any changes in bladder function that occurred after the stroke, as it was recognised that bladder problems cannot be treated unless they are assessed. Opinion was also expressed that bladder problems were not of interest to doctors.
iii) ‘It’s something you have to cope with yourself’
Stroke survivors perceived that they had to ‘live with’ their bladder condition and find ways to cope themselves. Personal changes were felt to be necessary in order to cope with the problem, such as not leaving their home, limiting time outside the house and the length of any journeys made, obsessive toilet mapping or restricting fluid intake. These were acknowledged as having a negative impact on the stroke survivor and their family’s quality of life. Around half of the participants coped with bladder symptoms by wearing pads [this was far more common amongst females (8 of 11 using pads) than males (1 of 9)]. Many made frequent, regular visits to the toilet, particularly before setting off on any journey out of the house and ensured they knew the location of public toilets before they went anywhere new.
iv) ‘There’s nothing can be done’
The potential to seek active treatment from health services was not recognised by these stroke survivors who believed that health services were not able to offer any treatment options for their bladder condition. For those who had sought help, input from health services was only the provision of pads by District Nurses, following a referral from a Stroke Nurse. With the exception of one person who attended a continence clinic, investigations or treatments were offered only in the case of bladder problems suspected to be caused by issues other than stroke, such as prostate or kidney disease, UTI's or haematuria. Views were expressed that it should not be assumed that other stroke related problems are more important than bladder problems.
Interpretation of results
- Qualitative data highlight that bladder issues following stroke are common, not prioritised and that there is an actual and perceived lack of treatment options open to stroke survivors
- Bladder issues cause embarrassment, anxiety and sleep disruption which has an impact on quality of life as people cope by changing and restricting their lifestyles to avoid embarrassing situations.