Title: Development and refinement of a STroke friendly Oral health Promoting (STOP) toolkit to improve oral self-care practices after discharge from hospital stroke services
Funder: Department of Health and Social Care

Abstract: Background: Dental disease is highly prevalent in people with stroke. Stroke survivors regard oral hygiene as an important yet neglected area of stroke care, and may experience significant challenges with self-care due to complex disabilities. Poor oral health increases the risk of future dental disease and can cause pain, impact on dietary intake, reduce quality of life, and increase risk of aspiration pneumonia and recurrent vascular events. Despite this, there is little evidence defining the challenges faced by stroke survivors, how best to address these and how to improve self-care practices. Aim: Our overarching aim is to develop an intervention for stroke survivors after their discharge from hospital to improve oral health by supporting oral self-care behaviours. Research questions: 1) What are the oral self-care needs of stroke survivors and their carers living in the community, and how can they be met? 2) What are the experiences of stroke survivors, their carers and relevant healthcare professionals regarding oral care service provision in primary care? 3) Which oral self-care behaviours are most amenable to change in this population, and what behaviour change techniques are most likely to be effective in enabling behaviour change? 4) What is the content and optimal format of an oral care intervention for stroke survivors? Plan of investigation: The study comprises two discrete phases, incorporating qualitative methodology, Experience-Based Co-Design (EBCD, a participatory action research approach that puts users at the centre of the design process), and psychological theory (Behaviour Change Wheel and the COM-B [Capability, Opportunity, Motivation and Behaviour] model). In Phase1 we will use qualitative methodology to gain a comprehensive understanding of the dental care experiences of stroke survivors, how they manage with oral self-care practices, health-seeking behaviours and the context of the proposed intervention. Community-dwelling stroke survivors (and their carers) at least 2 months following hospital discharge, will be invited to participate in a semi-structured interview which will be audio and video-recorded. We anticipate interviewing up to 20 stroke survivors (purposively sampled) to achieve data saturation. We will also gain insights from relevant healthcare professionals. Two focus groups will be undertaken with relevant healthcare professionals, spanning the interface between hospital and community services. Verbatim transcripts will undergo thematic analysis. In Phase 2 we will develop the STOP toolkit based on the information gleaned from Phase 1, using EBCD principles and the Behaviour Change Wheel framework. The EBCD process will agree the toolkit s target behaviours, behaviour change techniques and the content and mode of delivery. It will also explore barriers to implementation and optimal timing for provision of the toolkit. Firstly, a &ldquo;trigger film&rdquo; of &ldquo;touchpoints&rdquo; related to oral health care experiences and behaviours will be constructed from the audio and video-recorded interviews in phase 1. Four co-design workshops will then be run as follows: workshop 1 &ndash; stroke survivors and their carers; workshop 2 &ndash; healthcare professionals; workshop 3 - stroke survivors and their carers; workshop 4 &ndash; stroke survivors, their carers and healthcare professionals. Responses to the trigger-film and proposed approaches to support behaviour change will be used to develop the components, design and format of the toolkit. Potential benefits: The output of this study will be a prototype intervention, the STOP toolkit, grounded in service user experience and informed by behaviour change theory, ready for evaluation of feasibility and implementation prior to testing in a definitive phase 3 randomised clinical trial setting. Stroke and oral disease are already highly prevalent and are likely to increase in our ageing society. An effective, low-cost toolkit which could be implemented across UK primary care could therefore have substantial benefits to stroke survivors.

Lay abstract: Many people with a stroke have existing tooth decay and gum disease. Oral care is important to stroke survivors, but we know very little about how life after stroke influences people s ability to care for their mouths and access dental services. The aim of this research is to better understand the oral care needs and experiences of stroke survivors, and use this information in partnership with stroke survivors and healthcare professionals to develop an intervention (STOP toolkit) to improve tooth and gum health in stroke survivors after discharge from hospital. Patient and public involvement (PPI) will be an essential part of the process, with stroke survivors being part of the research team and informing the development of the STOP toolkit at each step. First, stroke survivors living at home, along with their carers, will be invited to participate in video-recorded interviews to see what problems are encountered with oral self-care. We will also speak with healthcare professionals involved in oral care about their experiences with stroke survivors. We will then develop the STOP toolkit, using an approach that puts stroke survivors at the centre of the design process, whilst ensuring the toolkit is also informed by theory and evidence. This process will be driven by stroke survivors and is aimed at meeting their particular needs. To do this, the video-recorded interviews will be used to identify areas where stroke survivors think care could be improved. We will then hold a series of workshops with stroke survivors, their carers and healthcare professionals to develop the content and format of the STOP toolkit. At the end of the research we will be ready to test the feasibility of the new STOP toolkit, before testing whether it can improve outcomes for stroke survivors in a full clinical trial.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: ORAL AND GASTROINTESTINAL;STROKE