Service user reflections on the impact of involvement in research

Background : Reports about the impact of patient and public involvement in research can be improved by involving patients and research staff more collaboratively to co-produce instruments to measure their involvement. This commentary, written by two members of a hospital-based patient panel and their coordinator for its work, describes how we co-produced instruments to evaluate the impact and effectiveness of our involvement. We present here the results, including our quantitative and qualitative findings, of this patient led evaluation and reflect on how our involvement has made a difference to the research projects and research infrastructure within the hospital in which we operate and on us as a panel. Methods : Existing impact frameworks and guidelines were reviewed. Members co-produced and piloted qualitative questionnaires to identify values associated with patient and public involvement (PPI) from both a researcher and panel member perspective, and collected quantitative metrics to provide descriptive statistics on the type of involvement and activities. Members also produced a comments slip to provide contemporaneous feedback after each meeting. Results : The panel has reviewed 36 research projects for the Therapeutics and Palliative Care Directorate drawn from speech and language therapy, physiotherapy, occupational therapy, dietetics, podiatry, palliative care services and chaplaincy. Some of the main results of our involvement have been the development of grant applications and making written information more understandable for research participants. Examples of how the Panel made a difference included providing an effective forum for debate by providing practical suggestions to improve research design and identifying potential issues that may not have occurred to the researcher. The panel has had an impact outside of meetings both within the context in which it operates and on the individuals involved. Examples included: influencing the Directorate research agenda, sharing resources with other groups, developing research relationships, and enabling member participation in different roles and settings. Discussion : Embedding ourselves within the Directorate research infrastructure has enabled us to adapt to organisational change and actively contribute to the research strategy. There is greater scope for involvement in areas of cost effectiveness and economic evaluation. Increasing member contributions and networking with other groups provides added value as well as cross fertilisation of ideas as part of our widening impact. Conclusion : Evaluating the impact of our involvement has improved our understanding of what aspects of involvement work best for the panel and the researchers who attend our meetings, and in the different settings that we work in. It has helped us to focus on how we need to develop to maximise our resources going forward

How does variation in assessment and management of dysphagia in acute stroke affect the development of stroke-associated pneumonia (SAP)?

Background: Patients with dysphagia are at increased risk of stroke-associated pneumonia (SAP). Preventing SAP is therefore one of the key challenges of stroke unit care. This study investigated how variation in assessment and management of dysphagia in acute stroke affects the risk of stroke patients developing SAP. Methods: Two systematic reviews identified the methods of dysphagia assessment and management in acute stroke that influence the risk of SAP, and other interventions and care process that may contribute to that risk. A mixed methods study was used to develop a national survey of organisational practice about dysphagia assessment and management in acute stroke. The quantitative method was a review of stroke patient records (N=30). Qualitative methods included interviews with hospital staff (N=15) and patients and carers (N=6). Four topic areas were identified for exploration: (a) dysphagia screening, (b) specialist swallowing assessments and management, (c) NGT feeding, and (d) oral care processes. Speech and Language Therapists from 166 stroke units in England and Wales were surveyed. Survey data were linked to the Sentinel Stroke National Audit Programme (SSNAP) data to estimate risk of SAP. Results: Survey completion rate was 68% (N=113). There was variation in dysphagia screening protocols (DSPs), oral care and NGT placement. Patterns of consistency occurred in the specialist swallow assessment. Multivariable analyses showed no evidence of association in incidence of SAP when using DSPs that used water only compared to multiple consistencies; when using written guidelines for the specialist swallowing assessment compared to not using written guidelines; when teams inserted NGTs overnight compared to teams that did not; and when teams had a written oral care protocol compared to those that did not. Discussion The multifactorial pathophysiology of SAP and inter dependency of dysphagia care processes make it difficult to unpack which components of dysphagia assessment and management are associated with risk of SAP. Future empirical research and large clinical trials that allow evaluation of multiple interventions to determine what are most effective at minimising risk of SAP are needed

Variation in Dysphagia Assessment and Management in Acute Stroke: An Interview Study

(1) Background: Patients with dysphagia are at increased risk of stroke-associated pneumonia. There is wide variation in the way patients are screened and assessed. The aim of this study is to explore staff opinions about current practice of dysphagia screening, assessment and clinical management in acute phase stroke. (2) Methods: Fifteen interviews were conducted in five English National Health Service hospitals. Hospitals were selected based on size and performance against national targets for dysphagia screening and assessment, and prevalence of stroke-associated pneumonia. Participants were purposefully recruited to reflect a range of healthcare professions. Data were analysed using a six-stage thematic process. (3) Results: Three meta themes were identified: delays in care, lack of standardisation and variability in resources. Patient, staff, and service factors that contribute to delays in dysphagia screening, assessment by a speech and language therapist, and delays in nasogastric tube feeding were identified. These included admission route, perceived lack of ownership for screening patients, prioritisation of assessments and staff resources. There was a lack of standardisation of dysphagia screening protocols and oral care. There was variability in staff competences and resources to assess patients, types of medical interventions, and care processes. (4) Conclusion: There is a lack of standardisation in the way patients are assessed for dysphagia and variation in practice relating to staff competences, resources and care processes between hospitals. A range of patient, staff and service factors have the potential to impact on stroke patients being assessed within the recommended national guidelines

Experiences of dysphagia after stroke: an interview study of stroke survivors and their informal caregivers

(1) Background: Swallowing difficulties (dysphagia) after stroke are not uncommon and is a consistent risk factor for stroke-associated pneumonia. This interview study explores the perspectives of stroke survivors, who had their swallowing assessed in the first few days of admission to hospital, and their informal caregivers. (2) Methods: A participatory approach was used involving people affected by stroke in the interpretation and analysis of the interview data. Data was thematically analysed and six themes were identified. (3) Results: These themes included how past-future experiences may influence a person’s emotional response to events; understanding what is happening and adjustment; the impact of dysphagia; attitudes to care; communication to patients and procedural issues. (4) Conclusion: The findings highlight the importance of effective public health messages to improve people’s responsiveness to the signs of stroke, standardisation of assessment and management procedures, effective communication to patients about the consequences of dysphagia, and the impact of dysphagia on the person who had the stroke and their informal caregiver

Impact of dysphagia assessment and management on risk of stroke-associated pneumonia: A systematic review

Background Patients with dysphagia are at increased risk of stroke-associated pneumonia. There is wide variation in the way patients are screened and assessed during the acute phase. The aim of this review was to identify which methods of assessment and management in acute stroke influence the risk of stroke-associated pneumonia. Studies of stroke patients that reported dysphagia screening, assessment or management and occurrence of pneumonia during acute phase stroke were screened for inclusion after electronic searches of multiple databases from inception to November 2016. The primary outcome was association with stroke-associated pneumonia. Summary Twelve studies of 87824 patients were included. The type of dysphagia screening protocol varied widely across and within studies. There was limited information on what comprised a specialist swallow assessment and alternative feeding was the only management strategy, which was reported for association with stroke-associated pneumonia. Use of a formal screening protocol, early dysphagia screening and assessment by a speech and language pathologist (SLP) was associated with a reduced risk of stroke-associated pneumonia. There was marked heterogeneity between the included studies, which precluded meta-analysis. Key Messages There is variation in assessment and management of dysphagia in acute stroke. There is increasing evidence that early dysphagia screening and specialist swallow assessment by a SLP may reduce the odds of stroke-associated pneumonia. There is the potential for other factors to influence incidence of stroke-associated pneumonia during the acute phase

Factors associated with risk of stroke-associated pneumonia in patients with dysphagia: A systematic review

Dysphagia is associated with increased risk of stroke-associated pneumonia (SAP). However, it is unclear what other factors contribute to that risk or which measures may reduce it. This systematic review aimed to provide evidence on interventions and care processes associated with SAP in patients with dysphagia. Studies were screened for inclusion if they included dysphagia only patients, dysphagia and non-dysphagia patients or unselected patients that included dysphagic patients and evaluated factors associated with a recorded frequency of SAP. Electronic databases were searched from inception to February 2017. Eligible studies were critically appraised. Heterogeneity was evaluated using I2. The primary outcome was SAP. Eleven studies were included. Sample sizes ranged from 60 to 1088 patients. There was heterogeneity in study design. Measures of immunodepression are associated with SAP in dysphagic patients. There is insufficient evidence to justify screening for aerobic Gram-negative bacteria. Prophylactic antibiotics did not prevent SAP and proton pump inhibitors may increase risk. Treatment with metoclopramide may reduce SAP risk. Evidence that nasogastric tube (NGT) placement increases risk of SAP is equivocal. A multidisciplinary team approach and instrumental assessment of swallowing may reduce risk of pneumonia. Patients with impaired mobility were associated with increased risk. Findings should be interpreted with caution given the number of studies, heterogeneity and descriptive analyses. Several medical interventions and care processes, which may reduce risk of SAP in patients with dysphagia, have been identified. Further research is needed to evaluate the role of these interventions and care processes in clinical practice

Exploring factors that influence the spread and sustainability of a dysphagia innovation: an instrumental case study

Background: Swallowing difficulties challenge patient safety due to the increased risk of malnutrition, dehydration and aspiration pneumonia. A theoretically driven study was undertaken to examine the spread and sustainability of a locally developed innovation that involved using the Inter-Professional Dysphagia Framework to structure education for the workforce. A conceptual framework with 3 spread strategies (hierarchical control, participatory adaptation and facilitated evolution) was blended with a processual approach to sustaining organisational change. The aim was to understand the processes, mechanism and outcomes associated with the spread and sustainability of this safety initiative. Methods: An instrumental case study, prospectively tracked a dysphagia innovation for 34 months (April 2011 to January 2014) in a large health care organisation in England. A train-the-trainer intervention (as participatory adaptation) was deployed on care pathways for stroke and fractured neck of femur. Data were collected at the organisational and clinical level through interviews (n = 30) and document review. The coding frame combined the processual approach with the spread mechanisms. Pre-determined outcomes included the number of staff trained about dysphagia and impact related to changes in practice. Results: The features and processes associated with hierarchical control and participatory adaptation were identified. Leadership, critical junctures, temporality and making the innovation routine were aspects of hierarchical control. Participatory adaptation was evident on the care pathways through stakeholder responses, workload and resource pressures. Six of the 25 ward based trainers cascaded the dysphagia training. The expected outcomes were achieved when the top-down mandate (hierarchical control) was supplemented by local engagement and support (participatory adaptation). Conclusions: Frameworks for spread and sustainability were combined to create a ‘small theory’ that described the interventions, the processes and desired outcomes a priori. This novel methodological approach confirmed what is known about spread and sustainability, highlighted the particularity of change and offered new insights into the factors associated with hierarchical control and participatory adaptation. The findings illustrate the dualities of organisational change as universal and context specific; as particular and amendable to theoretical generalisation. Appreciating these dualities may contribute to understanding why many innovations fail to become routine

Exploring scale-up, spread, and sustainability: an instrumental case study tracing an innovation to enhance dysphagia care

Background Adoption, adaptation, scale-up, spread, and sustainability are ill-defined, undertheorised, and little-researched implementation science concepts. An instrumental case study will track the adoption and adaptation, or not, of a locally developed innovation about dysphagia as a patient safety issue. The case study will examine a conceptual framework with a continuum of spread comprising hierarchical control or ‘making it happen’, participatory adaptation or ‘help it happen’, and facilitated evolution or ‘let it happen’. Methods This case study is a prospective, longitudinal design using mixed methods. The fifteen-month (October 2012 to December 2013) instrumental case study is set in large, healthcare organisation in England. The innovation refers to introducing a nationally recognised, inter-disciplinary dysphagia competency framework to guide workforce development about fundamental aspects of care. Adoption and adaptation will be examined at an organisational level and along two, contrasting care pathways: stroke and fractured neck of femur. A number of educational interventions will be deployed, including training a cadre of trainers to cascade the essentials of dysphagia management and developing a Dysphagia Toolkit as a learning resource. Mixed methods will be used to investigate scale-up, spread, and sustainability in acute and community settings. A purposive sample of senior managers and clinical leaders will be interviewed to identify path dependency or the context specific particularities of implementation. A pre- and post-evaluation, using mealtime observations and a survey, will investigate the learning effect on staff adherence to patient specific dysphagia recommendations and attitudes towards dysphagia, respectively. Official documents and an ethnographic field journal allow critical junctures, temporal aspects and confounding factors to be explored. Discussion Researching spread and sustainability presents methodological and practical challenges. These include fidelity, adaptation latitude, time, and organisational changes. An instrumental case study will allow these confounding factors to be tracked over time and in place. The case study is underpinned by, and will test a conceptual framework about spread, to explore theoretical generalizability

Abstracts from the NIHR INVOLVE Conference 2017

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Are differences in dysphagia assessment, oral care provision or nasogastric tube 3 insertion associated with stroke-associated pneumonia? A nationwide survey linked to 4 national stroke registry data.

Introduction Stroke-associated pneumonia (SAP) is a common complication associated with poor outcomes. Early dysphagia screening and specialist assessment is associated with reduced risk of SAP. Evidence about oral care and nasogastric tube (NGT) placement is equivocal. This study aimed to expose variations in dysphagia management practices and explore their associations with SAP. Participants and methods Speech Pathologists from 166 stroke units in England and Wales were surveyed about dysphagia assessment and management, oral care and NGT placement. Survey data were then linked to the Sentinel Stroke National Audit Programme (SSNAP), the national register of stroke. Univariable and multivariable linear regression models were fitted to estimate the association between dysphagia management practices and SAP incidence. Results 113 hospitals completed the survey (68%). Variation was evident in dysphagia screening protocols (DSPs), oral care and NGT practice while specialist swallow assessment data patterns were more consistent. Multivariable analysis showed no evidence of an association in incidence of SAP when using a water-only hospital DSP compared to a multi-consistency DSP (B -.688, 95% CI –2.912-1.536), when using written swallow assessment guidelines compared to not using written guidelines (B .671, 95% CI –1.567-2.908), when teams inserted NGTs overnight compared to teams which did not (B –.505, 95% CI –2.759-1.749) and when teams had a written oral care protocol compared to those which did not (B –1.339, 95% CI –3.551 - .873). Discussion and Conclusion Variation exists in dysphagia screening and management but there was no evidence of an association between clinical practice patterns and incidence of SAP. Further research with larger sample sizes is needed to examine association with SAP