This original research aimed to produce a theoretical understanding of how people who experience incontinence after stroke are best supported to manage their leakage to participate fully in a meaningful life. Although about half of stroke survivors experience urinary incontinence, and most continue to have urinary incontinence a year later [1], there is a limited corpus of post-stroke continence rehabilitation research. Most of it focuses on the intervention effectiveness (e.g. type and use of incontinence product, urinary urgency suppression, pelvic floor muscle training, electrical stimulation). We have taken a novel approach, trying to understand how participation in meaningful life roles – rather than symptom management – is enabled and what needs to happen in continence management so that this is possible. Our objective was to form an explanatory theoretical understanding about the relationships between: (1) the context in which continence management is delivered, (2) the mechanisms through which continence management interventions are intended to work, and (3) participation as an outcome of continence management support.

This was a realist-informed participatory research design [2]. There were two data collection and theory development stages – a rapid realist literature review (n=21 published studies) in consultation with an international continence-expert stakeholder group (n=5), followed by qualitative interviews with stroke survivors (n=7) and their partners (n=5).  

The rapid realist review of published and grey literature drew on the standards for realist synthesis [3]. We invited five international continence-expert researchers to determine the review scope, identify key literature and researchers for follow-up. An information specialist provided guidance in the English language searches of Medline, Cinahl, Scopus, Proquest and Web of Science databases (all from inception to October 2018). We also searched grey literature (e.g. stroke guidelines) in five developed countries for clinical recommendations about post-stroke continence management based on best evidence syntheses. Study characteristics and data were extracted into an Excel spreadsheet and Word document respectively. Data relevance (the depth and descriptive detail about patient experiences) and rigour (study quality) were assessed and grade high, moderate or low. Both extraction and assessment were performed by one researcher and checked by a second. We inductively coded the included literature (n=21) in relation to intervention architecture, contexts, mechanisms, and outcomes using bespoke evidence tables in Word. In response to the emerging findings and consistent with realist literature review methods, we conducted additional targeted literature searches to optimise relevant theoretical conceptualisation. Specifically, we searched for concepts associated with self-efficacy, self-management, participation and community integration for people experiencing incontinence after stroke.

Next, we interviewed stroke survivors and their partners (providing unpaid care) to ensure that the explanatory theory was relevant to their experiences, the current and local service delivery context. In the interview we explored their experiences, including the various contexts and mechanisms that appeared to contribute (or not) to the successful negotiation of incontinence to enable social participation. We purposively selected stroke survivors who were either at the point of discharge from inpatient rehabilitation or at the point of discharge from formal community-based rehabilitation. Eligible participants had a stroke, were aged 18 years or over, had experienced urinary incontinence at some point post-stroke and lived in their own home. While the literature review informed the interview schedule, we remained open to the direction and priority given to interview topics by the different participants. Interviews were coded independently by two researchers. NVivo was used to gather the data under the following code headings: (a) intervention resources, actions or tasks, (b) contextual factors, (c) mechanisms, and (d) outcomes. To focus on chains of causality, we paid attention to data that provided evidence of links between these headings. The researchers compared and debated their coding decisions throughout the analytic process.

When synthesising the findings from the two data collection stages, we used context-mechanism-outcome (CMO) configurations as an analytic tool to provide a deeper understanding of relationships between the context in which continence management support is delivered, how these strategies or programs are intended to work (i.e., the mechanisms of effect) and participation-related outcomes that have occurred in response to receiving continence management support. Analysis was iterative, and conceptualisation and refinement of theory occurred as the emerging theory was presented to and ‘checked’ with members of the international continence-expert stakeholder group. The theory is, therefore, an analytical product and not merely a descriptive account.  We developed a narrative overview of key CMO configurations, and a diagrammatic representation of these.

Continence management in post-stroke rehabilitation is delivered in a dynamic context in which the stroke survivor and their partner (the caring dyad) are managing a changed and changing post-stroke body (e.g. mobility concerns, fatigue), variable bladder function (e.g. changing within and between days), and their relationship (e.g. different participation expectations, desire to reduce the burden of continence management of their partner). The dyad requires caring conversations that offer a range of continence management options to support participation in meaningful life roles (e.g. being a spouse, parent, and grandparent; membership of faith and cultural groups; taking part in social and recreational activities outside the home with family and friends). We use the plural – conversations – because dialogue over time is needed. Caring conversations support participation because the dyad can reflect on trial and error learning as they experiment with the different options in different contexts. Thus, the dyad develops a tailored ‘toolkit’ of resources that they apply flexibly, with confidence and mastery, in different settings (e.g. during the day and the night, in and outside the home, in familiar and unfamiliar places, travelling short and longer distances, when toilets are accessible or not). These resources work because they are developed through shared decision making and produce efficacy within the caring dyad (Figure 1).

Existing evidence from stroke survivors, carers and health professionals suggests that urinary incontinence management during rehabilitation is seldom discussed and not prioritised. There are many reasons, including the focus on addressing impairments (e.g. swallowing difficulties, communication disorders, loss of movement in the limbs, reductions in balance and mobility) and the embarrassment and stigma associated with incontinence that patients and providers feel. An ongoing caring conversation that enables problem-solving, a tailored toolkit, and development of dyadic efficacy for managing urinary incontinence is what may work to enable participation in a meaningful life. Survivors and carers expect health professionals to begin the conversation, and all rehabilitation health professionals can contribute.

This research has unpacked the mechanisms of effect for continence management that support stroke survivors' participation in meaningful life roles. The explanatory theory offers a template for examining and designing the core components of effective rehabilitation services for stroke survivors with urinary incontinence. This theory is ready for use, and further development, in effectiveness-implementation research.

Williams, M.P., Srikanth, V., Bird, M., & Thrift, A.G. (2012) Urinary symptoms and natural history of urinary continence after first-ever stroke--a longitudinal population-based study. Age & Ageing, 41(3), 371-6.
Pawson, R., & Tilley, N. (1997). Realistic Evaluation. London: SAGE
Wong, G., Greenhalgh, T., Westhorp, G. et al. (2013) RAMESES publication standards: realist syntheses. BMC Medicine 11, 21. https://doi.org/10.1186/1741-7015-11-21