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

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According to the World Heart Federation, 15 million people worldwide suffer a stroke every year. Approximately six million of them die and five million survive in a permanently disabled state 1. In the year 2000, 1.1 million people suffered a stroke in Europe and the incidence is expected to increase to 1.5 million stroke events by 2025 2. A stroke is described by a group of pathological conditions characterised by sudden, nonconvulsive loss of neurological function due to brain ischaemia, intracerebral or subarachnoid haemorrhage 3. Depending on the area of distribution of the cerebral arteries, symptoms are different, comprising, for example, hemiparesis, sensitivity disorders, dysarthria, hemianopsia, neglect, dysphagia, motor or cognitive deficits and incontinence 4. Urinary incontinence is a common symptom after stroke. According to Kolominsky‐Rabas et al. 6, the prevalence during the acute phase is 53% and 32% at 12‐month follow‐up. The study by Williams et al. 7 showed approximately the same results: after 3 months, 43.5% of stroke survivors suffer from urinary incontinence and 37.7% after 12 months. Lawrence et al. 8 reported that in the acute phase, incontinence is one of the most common impairments in people who suffered a stroke (48.2%). The presence of incontinence after a stroke adversely affects mortality, disability and institutionalisation rates 6. Incontinent stroke survivors show poorer functional rehabilitation outcomes and reduced independency in daily activities 10. Pilcher and MacArthur 12 identified feelings of embarrassment and depression as very common consequences of urinary incontinence in patients who suffered a stroke. Incontinent stroke survivors in rehabilitation described challenges concerning communication about incontinence and involvement in continence care decisions 13. A qualitative study based on interviews with stroke survivors after discharge from a rehabilitation clinic demonstrated that patients did not receive enough counselling about urinary incontinence and suffered from distress as well as a loss of purpose 14. In consequence, they experienced social isolation and a breakdown of relationships 15. For family caregivers, managing incontinence in stroke survivors is associated with chaos, hypervigilance, exhaustion and ‘creating a new life’ 16.
Although urinary incontinence causes poorer rehabilitation outcomes and negatively influences patients' quality of life, thus far there is only limited evidence for interventions to promote urinary continence after stroke 17. An internationally acknowledged evidence‐based guideline for continence promotion in stroke survivors during inpatient rehabilitation does not yet exist. Due to the multifactorial causes, treatment of urinary incontinence after stroke is complex 18. To address such a multifaceted problem, a complex intervention according to Craig et al. 19 is necessary. In order to develop such an intervention, it is important to take into account the needs of the affected persons 20. Little is known about the lived experience of stroke survivors suffering from urinary incontinence during inpatient rehabilitation. Only one study focussing on the experience of incontinence management during rehabilitation could be identified 13. However, studies investigating patients' experience of urinary incontinence in a general context are absent. White et al. 14 interviewed stroke survivors at home, but did not examine their experiences in the rehabilitation setting. For this reason, the aim of the current study was to gain an in‐depth understanding of stroke survivors' experiences concerning urinary incontinence and its treatment in an inpatient rehabilitation clinic. As is already known, management of urinary incontinence in a rehabilitation clinic is an interdisciplinary task 21. Therefore, patients' experiences of incontinence management are not focussed on a specific discipline. The results of this study will provide important indications for developing an intervention to promote continence in stroke survivors.

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