The development of guidance on mouth care for dysphagia in hospital patients with dementia (GUMS-D)

Background The oral health of older adults (people over 65 years of age) often deteriorates when they are admitted to hospital. This is a cause for concern as poor oral health has been linked to an increase in hospital-acquired infections, reduced nutritional intake, longer hospital stays and increased care costs. Patients with dysphagia (swallowing difficulties) who are living with dementia are especially at risk of poor oral health. Patients with dementia are often dependent on hospital staff to help them clean their teeth and mouths, but may have difficulty asking for help. The presence of dysphagia increases the risk of aspiration which may result in chest infections from saliva, food or drink entering the lungs. With poor mouth care, there is also a greater risk of developing mouth ulcers and infections such as oral thrush. All of this can lead to pain, distress and a reduced quality of life. Currently there is limited research on the best way of providing mouth care for people with swallowing difficulties living with dementia. There are few evidence-based mouth care guidelines and clinicians therefore implement local practices. The research presented in this thesis explored published mouth care evidence and policies, which led to the development of an intervention called Guidance on Mouth care with Swallowing difficulties for hospital patients with Dementia (GUMS-D). This intervention was co-created together with carers and healthcare staff to ensure that it was appropriate, safe and implementable for use with patients in hospital. Methods There were three stages of intervention development, broadly focussing on synthesis, validation, and implementation. Research ethics committee approval was received prior to the start of recruitment and data collection for the interviews and the focus groups. The approach was informed by critical realism, and qualitative mixed methods were adopted using the Medical Research Council framework for developing and evaluating complex interventions. Behaviour change techniques and frameworks were used to support data collection and analysis. Causation was explored through proposed generative mechanisms. During the first stage, a systematic review was conducted to identify existing, evidence-based interventions. This was followed by semi-structured 1:1 qualitative interviews, using a purposive sampling design, to recruit healthcare professionals and carers to explore their experiences of mouth care with this patient group in an acute hospital setting. Findings were analysed using reflexive thematic analysis. A first version of the intervention was developed from these two sets of findings using the template for intervention description and replication (TIDieR) to organise the data and provide subheadings to support synthesis. There was also review and refinement from additional clinical experts. During the second stage, a scoping review of clinical practice guidelines was conducted. Triangulation and synthesis of this third data set was used for validation of the intervention, which was subsequently modified to produce a second version of the intervention. During the final stage, focus group discussions with stakeholders took place to explore the challenges and facilitators for implementation. A purposive sampling strategy was adopted for recruitment, and thematic analysis was used to analyse the findings. Two versions of the intervention were produced, scientific and plain English versions. There was patient and public involvement throughout all stages of the study: during the design, analysis and interpretation of empirical findings, and formatting of the final version of the GUMS-D. Results The systematic review identified seven studies of mixed design with little consensus about how best to deliver mouth care, and no protocol or intervention specifically developed for this patient group. The papers came from Japan and USA, and had been published between 2008 and 2018. This lack of published evidence supported the development of a mouth care intervention. A total of 14 participants were recruited for the qualitative interviews, and five main themes were produced from the findings: interacting with patients with dementia, mouth care needs for good oral hygiene, accountability, products and tools for cleaning the mouth, time demands and limitations. Each theme had sub-themes. The first iteration of the GUMS-D intervention was developed based on the interviews and literature. It included components on resources, activities, causation, outcomes and impacts to individuals and organisations. The scoping review of clinical practice guidelines identified eight guidelines from across the UK, the USA and Canada. Data were extracted and synthesised using a triangulation protocol to facilitate consensus about key components and to modify the programme theory. There was limited information available about how such an intervention would be implemented. Three focus groups, which included speech and language therapists, nursing and dental staff, and carers, with a total of 12 participants, were completed. Eight main themes relating to implementation were produced: leadership, organisation structure and systems, funding, education and training, assessment, documentation systems, communication, mindset. The findings were used to modify the GUMS-D to produce a final version. The results identified that in order to effect changes in mouth care practice in acute NHS settings, there was a need for changes from top to bottom at both organisation and individual levels, and for investment in resources and training. The data highlighted that changes may be impacted by competing priorities within organisations, as well as economic and political factors. Conclusion The GUMS-D intervention was developed using systematic methods underpinned by theory. It includes practical guidance for use by clinicians in acute hospitals and policy recommendations for health care services. The next stage of research would aim to empirically evaluate the feasibility of implementing the GUMS-D in acute hospitals to patients with dysphagia who are living with dementia.

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