Hypothesis / aims of study
People living with dementia are at considerably higher risk of developing incontinence than those without dementia. Causes commonly include lack of insight into bodily sensations, problems with process of reaching or using the toilet, and functional limitations [1]. Family carers have long called for better continence guidance from clinicians [1], but clinicians report that they lack the knowledge and resources to help [2]. This study aimed to develop and evaluate a low-cost, scalable intervention that can enable clinicians to start continence conversations with carers, identify and discuss continence problems and then deliver and provide access to practical advice.
Study design, materials and methods
The intervention was developed and evaluated in three phases drawing on complex intervention development guidance, the Person-Based Approach [3] and co-production with stakeholders:
Phase 1: Systematic review and narrative synthesis of literature to identify the intervention features required to address carer and clinician needs and support effective engagement with the intervention content. : MEDLINE, PsycINFO, EMBASE, CINAHL and Cochrane Central Register of Controlled Trials (CENTRAL) were searched for relevant literature from 2009-2022.
Phase 2: Semi-structured interviews with primary and community clinicians and homecare workers recruited from areas with diverse populations to examine 1) Experiences and views of delivering continence care to people living with dementia and their carers, 2) Proposed content, timing and delivery of the intervention, 3) Potential barriers and facilitators to intervention use. Interviews were transcribed verbatim and Framework analysis was used. An online prototype was developed with additional stakeholder input.
Phase 3: Semi-structured and think-aloud interviews were used to evaluate the usability and acceptability of the prototype with clinicians, carers, and homecare workers. Participants were asked to work through the prototype (either before the interview or in real-time) and asked about their views on the intervention, how it could be improved and disseminated.
Results
Phase 1: 5,547 papers were reviewed, resulting in the identification of 12 relevant papers. These papers highlighted the important intervention features, which included mode of delivery, targeted and tailored resources, content, design and navigation, credibility of the information or resource; role of professionals and organisations and user involvement in their development and evaluation.
Phase 2: Findings from 45 semi-structured interviews (31 clinicians, 14 homecare workers) highlighted that the intervention design and content needed to address the challenges of initiating and navigating continence conversations in healthcare contexts. For example, many community and primary care health professionals, including family physicians, community and practice nurses discussed lack of dementia-continence specific knowledge leading to low confidence in initiating conversations; perceptions that people with dementia and their carers do not want to engage in such conversation due to the stigma associated with incontinence; time pressures, workforce shortages and lack of resources. Provision of continence support to people with dementia was viewed as low priority and outside the remit of primary care. There is a perception that homecare workers are more suited to provide continence support to people with dementia and their carers. An online prototype intervention prioritising clinician and carers needs for easy to access high-quality core advice relevant to types/levels of incontinence communicated in plain language supplemented by optional links to further information sources, containing varied levels of detail was developed.
Phase 3: The prototype intervention was evaluated by 40 participants (11 carers, 24 clinicians and 5 homecare workers). The website received a highly positive response, with the substantial majority of participants reporting it both useful and acceptable; many participants had already shared the resource. Clinicians reported that they would use the resources in different ways depending on the circumstances. For example, non-specialist clinicans generally indicated that they would sign-post to carer resources to support self-management, but with limited clinical input. However, specialist clinicians (e.g. continence or dementia nurses) might use the intervention to support more detailed conversations. Findings were used to further refine and strengthen the intervention, including improving navigation and minor additions to the content. Participants also highlighted the need for two additional sections of the website, specifically for people living with dementia and homecare workers.
Interpretation of results
This study led to the development and evaluation of the first theory and evidence-informed low-cost online intervention to support clinicians in providing continence guidance to the carers of people living at home with dementia. The intervention is in two sections. One provides evidence-based guidance for any clinician providing support, and the other (which can be sign-posted to by clinicians) provides detailed practical guidance directly for carers to help them manage a wide range of continence and toilet-use problems. Phase 1 and 2 findings highlighted the challenges of developing an intervention that was credible, easy to use and would promote continence conversations. Phase 3 evaluation indicates that the intervention provides an acceptable, useful, low-cost resource that the large majority of clinicians were keen to use. Additional sections are needed for homecare workers and people living with dementia and will be developed, evaluated and disseminated by 2026.