Using longitudinal qualitative research to explore the experience of receiving and using augmentative and alternative communication.

BACKGROUND: People who have communication difficulties may benefit from using augmentative and alternative communication (AAC). Understanding and measuring outcomes from the use of AAC is an important part of evaluating the impact of devices and services. Outcome measurement needs to reflect the changing nature of the impact of using AAC on an individual's ability to participate in activities of daily life. There is a limited understanding of the concepts that should inform the evaluation of outcomes from AAC device provision, nor how people's expectations from AAC may change over time. AIMS: To inform the development of a patient-reported outcome measure for AAC by understanding more about people's expectations from AAC and how these change over time. METHODS & PROCEDURES: A longitudinal qualitative research study was designed and carried out with seven participants over a period of 2 years. Participants were recruited from a regional specialist assessment service for AAC in the south-west of the UK. Four semi-structured interviews were carried out: (1) before assessment for AAC, (2) after assessment, (3) directly after provision of an AAC device and (4) between 6 and 12 months after provision. An original analytic method was used in this study that built on the principles of longitudinal interpretative phenomenology analysis, applied with a dialogic theoretical lens. This approach enabled the inclusion of a range of multimodal and embodied data collected to this study and allowed the research team to draw out salient themes across the cohort group while attending to the influence of time and context on experience. OUTCOMES & RESULTS: The results confirm and extend the three core concepts that were used to guide analysis: changes; contexts; future possibilities. The contextual and temporal influences on outcomes attainable from AAC for this cohort were also identified and illustrated through cross-case comparison. Deeper, analytic, and conceptual engagement with theory, which was then applied to analysis of the data, provided methodological rigour in the study. The results enhance our understanding of people's hopes and expectations from AAC and how these change over time. CONCLUSIONS & IMPLICATIONS: This qualitative longitudinal research study provides new insights into the journeys of people who experience communication disability, and the shifting nature of their sense of identity as they engage with, and learn from using, AAC. The study is significant as it attends to the dynamic nature of experience and how contextual and experiential factors influence people's hopes and expectations from AAC. The paper presents an original application of longitudinal qualitative research methodology with people who use AAC which can be further applied and tested in the field of communication disability research. WHAT THIS PAPER ADDS: What is already known on this subject We did not know the impact that time has on the concepts that have been identified to represent important outcomes from AAC. The existing concepts used to define outcomes from AAC were not adequately conceptualized to develop a patient-reported outcome measure. This study sought to extend our knowledge about outcomes from AAC. What this paper adds to the existing knowledge This study adds to the methodological toolkit available for qualitative inquiry in the field of communication disability research by presenting a longitudinal qualitative research methodology. It adds depth to our understanding of the concepts that underpin outcomes from AAC and highlights the dynamic nature of contexts and how this influences desired outcomes. What are the potential or actual clinical implications of this work? This longitudinal qualitative research study provides a broader perspective on the experience of getting AAC. It will enable clinicians to better navigate the contextual and transitionary factors that influence people's experience of acquiring AAC devices. The enhanced concepts described will also support clinical conversations that consider the wider facets of communication and what AAC can add to existing communicative tool kits beyond getting a message across.

Evaluating the usability of a co-designed power assisted exercise graphical user interface for people with stroke.

BACKGROUND: Digital advancement of power assisted exercise equipment will advance exercise prescription for people with stroke (PwS). This article reports on the remote usability evaluation of a co-designed graphical user interface (GUI) and denotes an example of how video-conference software can increase reach to participants in the testing of rehabilitation technologies. The aim of this study was to evaluate the usability of two sequential versions of the GUI. METHODS: We adopted a mixed methods approach. Ten professional user (PU) (2M/8F) and 10 expert user (EU) participants (2M/8F) were recruited. Data collection included a usability observation, a 'think aloud' walk through, task completion, task duration and user satisfaction as indicated by the Post Study System Usability Questionnaire (PSSUQ). Identification of usability issues informed the design of version 2 which included an additional submenu. Descriptive analysis was conducted upon usability issues and number of occurrences detected on both versions of the GUI. Inferential analysis enabled comparison of task duration and PSSUQ data between the PU and EU groups. RESULTS: Analysis of the 'think aloud' walkthrough data enabled identification of 22 usability issues on version 1 from a total of 100 usability occurrences. Task completion for all tasks was 100%. Eight usability issues were directly addressed in the development of version 2. Two recurrent and 24 new usability issues were detected in version 2 with a total of 86 usability occurrences. Paired two tailed T-tests on task duration data indicated a significant decrease amongst the EU group for task 1.1 on version 2 (P = 0.03). The mean PSSUQ scores for version 1 was 1.44 (EU group) and 1.63 (PU group) compared with 1.40 (EU group) and 1.41 (PU group) for version 2. CONCLUSIONS: The usability evaluation enabled identification of usability issues on version 1 of the GUI which were effectively addressed on the iteration of version 2. Testing of version 2 identified usability issues within the new submenu. Application of multiple usability evaluation methods was effective in identifying and addressing usability issues in the GUI to improve the experience of PAE for PwS. The use of video-conference software to conduct synchronous, remote usability testing is an effective alternative to face to face testing methods.

"I Assumed It Would Be Somebody Who Had a Stroke That Was Doing This": Views of Stroke Survivors, Caregivers, and Health Professionals on Tailoring a Relaxation and Mindfulness Intervention.

Stroke survivors and informal caregivers experience high levels of stress and anxiety, linked to heightened risk of secondary stroke in survivors. Relaxation and mindfulness could reduce stress and anxiety; being most effective when tailored to the target populations. Aims of the PPI include to: (1) consult on possible alterations to an existing relaxation and mindfulness intervention, delivered via YouTube/DVD and (2) discuss relevance and preference of prompts and cues designed to facilitate the daily practice of the intervention. Eleven UK PPI contributors were consulted during 2020: four stroke survivors (F = 2, M = 2), three caregivers (F = 1, M = 2), and four HCPs (F = 4) (range = 23-63 years). Contributors watched the existing intervention and provided feedback via online discussions. Transcripts were analysed using thematic analysis. Five themes were identified, highlighting several necessary alterations to the intervention: "Who represents the stroke population?"; "The paradox of age"; "Specifically selected language"; "Visual presentation of the intervention"; and the "Audio qualities". Contributors ranked the prompts and cues in order of preference with setting alarms and email alerts as the most popular. The PPI consultations resulted in several alterations enabling a revised version of the intervention. Including a PPI consultation at an early stage of the research improves the relevance and appropriateness of the research. The revised intervention is more representative of the stroke population thus more likely to be practised by survivors and caregivers, which will enhance the extent of effectiveness, reducing the risk of a secondary stroke.

Pulmonary Hypertension and Measurement of Exercise Capacity Remotely: Evaluation of the 1-min Sit-to-Stand Test (PERSPIRE) - a cohort study.

Background: Multiparameter risk assessment is recommended to aid treatment decisions in patients with pulmonary arterial hypertension. The 1-min sit-to-stand test (1MSTS) has been validated for use in other respiratory illnesses. The aim of this study was to evaluate its safety in the hospital setting and potential utility in remote assessment in patients with pulmonary hypertension. Methods: In a prospective cohort study design patients performed the 1MSTS and incremental shuttle walk test (ISWT) on the same day. The primary aim of the study was to assess safety signals and correlations with other metrics used in risk assessment. Results: 60 patients with pulmonary arterial hypertension and 15 with chronic thromboembolic pulmonary hypertension were enrolled. No adverse events were recorded. Post-test change in physiological parameters was lower for the 1MSTS than for the ISWT in heart rate (mean±sd change +9.4±8.0 versus +38.3±25.9 beats per min, p<0.001), oxygen saturation (-3.8±4.0% versus -8.9±7.3%, p<0.01) and systolic blood pressure (+10.1±10.5 versus +17.7±19 mmHg, p<0.001). There were significant correlations between the 1MSTS and ISWT (r=0.702, p<0.01), World Health Organization functional class (r= -0.449, p<0.01), emPHAsis-10 (-0.436, p<0.001) and N-terminal pro-b-type natriuretic peptide (r= -0.270, p=0.022). 97% of patients were willing to perform the test at home. Conclusion: This study has demonstrated the safety, sub-maximal characteristics of the 1MSTS in pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension in the hospital setting, its positive correlation with the ISWT and potential role in remote risk assessment. Further evaluation of this exercise test is now warranted.

Measuring communication as a core outcome in aphasia trials: Results of the ROMA-2 international core outcome set development meeting.

BACKGROUND: Evidence-based recommendations for a core outcome set (COS; minimum set of outcomes) for aphasia treatment research have been developed (the Research Outcome Measurement in Aphasia-ROMA, COS). Five recommended core outcome constructs: communication, language, quality of life, emotional well-being and patient-reported satisfaction/impact of treatment, were identified through three international consensus studies. Constructs were paired with outcome measurement instruments (OMIs) during an international consensus meeting (ROMA-1). Before the current study (ROMA-2), agreement had not been reached on OMIs for the constructs of communication or patient-reported satisfaction/impact of treatment. AIM: To establish consensus on a communication OMI for inclusion in the ROMA COS. METHODS & PROCEDURES: Research methods were based on recommendations from the Core Outcome Measures in Effectiveness Trials (COMET) Initiative. Participants with expertise in design and conduct of aphasia trials, measurement instrument development/testing and/or communication outcome measurement were recruited through an open call. Before the consensus meeting, participants agreed on a definition of communication, identified appropriate OMIs, extracted their measurement properties and established criteria for their quality assessment. During the consensus meeting they short-listed OMIs and participants without conflicts of interest voted on the two most highly ranked instruments. Consensus was defined a priori as agreement by ≥ 70% of participants. OUTCOMES & RESULTS: In total, 40 researchers from nine countries participated in ROMA-2 (including four facilitators and three-panel members who participated in pre-meeting activities only). A total of 20 OMIs were identified and evaluated. Eight short-listed communication measures were further evaluated for their measurement properties and ranked. Participants in the consensus meeting (n = 33) who did not have conflicts of interest (n = 29) voted on the top two ranked OMIs: The Scenario Test (TST) and the Communication Activities of Daily Living-3 (CADL-3). TST received 72% (n = 21) of 'yes' votes and the CADL-3 received 28% (n = 8) of 'yes' votes. CONCLUSIONS & IMPLICATIONS: Consensus was achieved that TST was the preferred communication OMI for inclusion in the ROMA COS. It is currently available in the original Dutch version and has been adapted into English, German and Greek. Further consideration must be given to the best way to measure communication in people with mild aphasia. Development of a patient-reported measure for satisfaction with/impact of treatment and multilingual versions of all OMIs of the COS is still required. Implementation of the ROMA COS would improve research outcome measurement and the quality, relevance, transparency, replicability and efficiency of aphasia treatment research. WHAT THIS PAPER ADDS: What is already known on this subject International consensus has been reached on five core constructs to be routinely measured in aphasia treatment studies. International consensus has also been established for OMIs for the three constructs of language, quality of life and emotional well-being. Before this study, OMIs for the constructs of communication and patient-reported satisfaction/impact of treatment were not established. What this paper adds to existing knowledge We gained international consensus on an OMI for the construct of communication. TST is recommended for inclusion in the ROMA COS for routine use in aphasia treatment research. What are the potential or actual clinical implications of this work? The ROMA COS recommends OMIs for a minimum set of outcomes for adults with post-stroke aphasia within phases I-IV aphasia treatment research. Although not intended for clinical use, clinicians may employ the instruments of the ROMA COS, considering the quality of their measurement properties. The systematic inclusion of a measure of communication, such as TST, in clinical practice could ultimately support the implementation of research evidence and best practices.

The Unspoken Voice: Applying John Shotter's Dialogic Lens to Qualitative Data from People Who have Communication Difficulties.

As speech and language therapists, we explored theories of communication and voice that are familiar to our profession and found them an inadequate basis on which to generate deep and rich analysis of the qualitative data from people who have communication difficulties and who use augmentative and alternative communication. Expanding our conceptual toolkit to include the work of John Shotter allowed us to reconceptualise voice and where it is emergent in dialogue. Reimaging voice will inform clinical and research praxis with people who have communication difficulties as it allows practitioners to attend more closely to the complexity and nuance inherent in interactions with this population. Our proposition is exemplified with excerpts from a single participant who has communication difficulties to illustrate the value of dialogic theory in praxis. This article presents a provocation for the wider academy of qualitative health research; do we have the concepts and tools to develop meaning with people whose lived experiences may also be hard to voice in monologues?

A qualitative evidence synthesis of the experiences and perspectives of communicating using augmentative and alternative communication (AAC).

PURPOSE: This paper presents a review of the existing qualitative research literature concerning people's experience of communicating using augmentative and alternative communication (AAC). The aims of conducting this review were to find out more about the values and outcomes that are important to people about the AAC they use to support their communication. This review was conducted to provide a deeper understanding of these experiences to inform the development of a patient-reported outcome measure (PROM). MATERIALS AND METHODS: A qualitative evidence synthesis of existing qualitative research literature was undertaken to explore and appraise current knowledge about the experiences of people who use AAC. RESULTS: From 115 qualitative research reports 19 papers were identified that responded directly to the research question and aims of the review. Data were identified that could be organized within an a priori framework consisting of the constructs of values, outcomes, and context. CONCLUSION: The review has resulted in a deeper, analytical understanding of the experiences of people who require AAC. The results indicate a set of concepts that can be used to inform the development of a PROM. A PROM can be used to assist clinicians and researchers to better understand the perspectives of people who require AAC and evaluate interventions. The results also encourage professionals to reconsider the terminology and methods used when working alongside people who require AAC and to reflect on the multidimensional factors that influence people's experience of communication.IMPLICATIONS FOR REHABILITATIONPatient-reported outcome measures (PROMs) can be useful tools to support clinician-patient communication, facilitate shared decision making and establish priorities for rehabilitation.It can be difficult to engage people who have complex communication difficulties in decisions about the important outcomes to them from using augmentative and alternative communication (AAC).This qualitative evidence synthesis provides a deeper understanding of the experiences and perspectives of people who use AAC.The results will be used to inform the development of a PROM which can be used to facilitate shared decision-making, and evaluate AAC interventions from the perspective of the people who use these technologies.

Examining Clinical Practice Guidelines for Exercise and Physical Activity as Part of Rehabilitation for People with Stroke: A Systematic Review.

BACKGROUND: Stroke is the leading cause of chronic physical disability in Western industrialised nations. Despite clear guidelines for exercise in individuals with many non-communicable diseases, the guidance for people with stroke (PwS) who frequently present with multiple comorbidities is less clear. A systematic review of exercise guidelines was undertaken to synthesise themes and patterns. METHODS: The review was completed according to the PRISMA statement. Guideline-specific databases were searched for worldwide clinical practice guidelines (CPGs). All included papers underwent quality assessment using the AGREE II protocol. Content synthesis and analysis of the guidelines was undertaken using CERT. RESULTS: Searching identified 2184 papers. After duplicate removal and screening by title and abstract, 22 CPGs remained for review. Seven guidelines identified three key roles for exercise interventions: (1) promoting a healthy lifestyle, (2) prevention of further strokes and (3) rehabilitation. Of concern, many CPGs fail to recommend appropriate safety measures and standards, pre-, during and post-exercise or tailor for specific needs. CONCLUSIONS: Global guidelines for exercise in PwS lack in-depth and technical information on the exercise delivery methods, application and dosage required to progress exercise interventions for PwS.

Are Differences in Dysphagia Assessment, Oral Care Provision, or Nasogastric Tube Insertion Associated with Stroke-Associated Pneumonia? A Nationwide Survey Linked to 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 a 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 multiconsistency DSP (B -0.688, 95% CI: -2.912 to 1.536), when using written swallow assessment guidelines compared to not using written guidelines (B 0.671, 95% CI: -1.567 to 2.908), when teams inserted NGTs overnight compared to teams which did not (B -0.505, 95% CI: -2.759 to 1.749), and when teams had a written oral care protocol compared to those which did not (B -1.339, 95% CI: -3.551 to 0.873). 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.

Using nominal group technique to advance power assisted exercise equipment for people with stroke.

BACKGROUND: Power assisted exercise is accessible and acceptable for people with stroke. The potential for technological advancement of the equipment to improve the user experience has been identified. Involvement of end users and service providers in the design of health technologies is essential in determining how said technology is perceived and adopted. This project invited people with stroke and service providers to influence design features and determine machine selection in the preliminary stages of a codesign research programme. AIMS: To capture the perspectives of people with stroke and professionals working with people with stroke about proposed digitalisation of power assisted exercise equipment and select machines for prototype development. METHODS: Nominal group technique was used to capture the perspectives, ideas, preferences and priorities of three stakeholder groups: people with stroke (n = 3, mean age 66 years), rehabilitation professionals (n = 3) and exercise scientists (n = 3). Two questions underpinned the structure of the events; 'What does an assistive exercise machine need to do to allow the person with stroke to engage in exercise?' and 'Which machines would you prioritise for use with People with Stroke?' Attendees were invited to cast votes to indicate their preferred machines. FINDINGS: Synthesis of the data from the NGT identified four domains; software and interface, exercise programme, machine and accessories, setting and service. Three preferred machines from a range of nine were identified through vote counting. CONCLUSION: Nominal group technique directed the selection of machines to be included in the development of the proposed technology. The vision shared by users during the structured discussion shaped the subsequent steps in the design and testing of the new technology. PATIENT AND SERVICE PROVIDER CONTRIBUTION: The opinions and preferences of people with stroke, rehabilitation professionals and exercise scientists were central to key decisions which will shape the digitalisation of power assisted equipment, influence future research and guide implementation of the new technologies.

Seated power assisted exercise machines assist different combinations of movement and can help people with stroke to take part in exercise programmes. Nine seated machines are manufactured in the UK. It was identified that the machines could be improved through development of technology to detect and display the user's physical effort during exercise. The research team successfully applied for funding to design and develop a new programme to display and measure user effort whilst exercising on the equipment. At the outset of the project the research team needed to make decisions about the capabilities of the new technology and select three machines from the range of nine to be prototyped. We used a method called nominal group technique during which end users with stroke, rehabilitation and exercise professionals were invited to structured meetings to share their ideas. At the end of the meetings the groups voted on their preferred machines. The ideas expressed during the meetings were listed and guided the ongoing development of the technology. The importance of a user-friendly interface was emphasised. The three machines which were allocated the most votes across the user groups were selected to be redesigned and developed with the new technology. The involvement of users at the outset of the design project ensured that they directly influenced the selection of machines and features of the new technology. Nominal group technique was an effective way of ensuring that all attendees had the opportunity to share their ideas and perspectives.

Users' experience of community-based power assisted exercise: a transition from NHS to third sector services.

PURPOSE: Seated Power Assisted Exercise (PAE) equipment is an accessible exercise mode for people with limited mobility following stroke and is available at a small number of community-based venues. The purpose of this qualitative study was to understand the lived experience of using PAE amongst PwS in a community venue and identify recommendations for the development and advancement of PAE equipment. METHOD: Semi-structured interviews were conducted with 8 participants (PwS) attending a community stroke venue where PAE equipment was available. Transcribed data were analysed using interpretative phenomenological analysis. RESULTS: Three overarching themes emerged from the analysis; 1) Don't tell me I've plateaued; 2) PAE facilitates the transition into long-term recovery; 3) Reframing the experience of stroke. Participants associated the uptake of PAE alongside venue membership as a turning point in their adjustment to life following stroke. In addition, recommendations for future development of the equipment were identified. CONCLUSION: These findings indicate that membership of a stroke venue alongside engagement with PAE facilitated transition from early stroke rehabilitation into longer term recovery. The results of this study have informed the need for future product design and highlighted PAE is an effective mode for continued rehabilitation in third-sector services.

Creativity in public involvement: supporting authentic collaboration and inclusive research with seldom heard voices.

BACKGROUND: The role of public involvement (PI) in healthcare research is growing in importance and it is imperative that researchers continuously reflect on how to promote the inclusion of patients and service users in the design and delivery of research. PI offers a mechanism for end-users to be involved planning, executing, and reporting research. Some patient groups, including people who have communication difficulties, may struggle to engage in the methods traditionally employed to promote PI engagement such as questionnaires and focus groups. METHODS: This article describes a longitudinal case-study of a PI group, consisting of people who have communication difficulties, for a patient-reported outcome development project. Creative methods, informed by the participatory design principles of enacting, seeing and doing, were introduced stepwise into seven PI meetings. Data from video and visual minutes were used to evaluate the impact of the methods, following each group. Feedback, in the form of verbal and visual outputs taken directly from group meeting minutes, along with vignettes evidenced the impact of the methods on the project and group members. RESULTS: Creative methods enabled the PI group members to successfully contribute in meetings, to interact dynamically and to engage with the aims and processes of the research project. Their involvement facilitated the development of accessible recruitment materials, informed data analysis and supported the dissemination of project outputs. Employing creative methods also enabled both PI group members and the academic team to reflect on their own roles within the research project and the impact that their active involvement in the PI group has had on their personal development and perspectives on research. CONCLUSION: The impact of using creative methods in PI for this patient-reported outcome measure (PROM) development project improved collaboration and understanding between PI members and the academic team. The authentic engagement of people who have communication difficulties in PI generated a more accessible project in terms of both process and impact. Creativity has applicability beyond people whose communication is non-verbal; it should be harnessed by research teams to identify and breakdown barriers to involvement to develop outcome tools that reflect the diversity of our populations.

What Is Intensity and How Can It Benefit Exercise Intervention in People With Stroke? A Rapid Review.

Background: Stroke is one of the major causes of chronic physical disability in the United Kingdom, typically characterized by unilateral weakness and a loss of muscle power and movement coordination. When combined with pre-existing comorbidities such as cardiac disease and diabetes, it results in reductions in cardiovascular (CV) fitness, physical activity levels, functional capacity, and levels of independent living. High-intensity training protocols have shown promising improvements in fitness and function for people with stroke (PwS). However, it remains unclear how intensity is defined, measured, and prescribed in this population. Further, we do not know what the optimal outcome measures are to capture the benefits of intensive exercise. Aim: To understand how intensity is defined and calibrated in the stroke exercise literature to date and how the benefits of high-intensity training in PwS are measured. Methods: A rapid review of the literature was undertaken to provide an evidence synthesis that would provide more timely information for decision-making (compared with a standard systematic review). Electronic databases were searched (including Medline, PubMed, CINAHL, and Embase for studies from 2015 to 2020). These were screened by title and abstract for inclusion if they: (a) were specific to adult PwS; and (b) were high-intensity exercise interventions. Eligible studies were critically appraised using the Mixed Method Appraisal Tool (MMAT). The data extraction tool recorded the definition of intensity, methods used to measure and progress intensity within sessions, and the outcomes measure used to capture the effects of the exercise intervention. Results: Seventeen studies were selected for review, 15 primary research studies and two literature reviews. Sixteen of the 17 studies were of high quality. Nine of the primary research studies used bodyweight-supported treadmills to achieve the high-intensity training threshold, four used static exercise bikes, and two used isometric arm strengthening. Five of the primary research studies had the aim of increasing walking speed, five aimed to increase CV fitness, three aimed to improve electroencephalogram (EEG) measured cortical evoked potentials and corticospinal excitability, and two investigated any changes in muscle strength. Although only one study gave a clear definition of intensity, all studies clearly defined the high-intensity protocol used, with most (15 out of 17 studies) clearly describing threshold periods of high-intensity activity, followed by rest or active recovery periods (of varying times). All of the studies reviewed used outcomes specific to body structure and function (International Classification of Functioning, Disability, and Health (ICF) constructs), with fewer including outcomes relating to activity and only three outcomes relating to participation. The reported effect of high-intensity training on PwS was promising, however, the underlying impact on neurological, musculoskeletal, and CV systems was not clearly specified. Conclusions: There is a clear lack of definition and understanding about intensity and how thresholds of intensity in this population are used as an intervention. There is also an inconsistency about the most appropriate methods to assess and provide a training protocol based on that assessment. It remains unclear if high-intensity training impacts the desired body system, given the diverse presentation of PwS, from a neuromuscular, CV, functional, and psychosocial perspective. Future work needs to establish a clearer understanding of intensity and the impact of exercise training on multiple body systems in PwS. Further understanding into the appropriate assessment tools to enable appropriate prescription of intensity in exercise intervention is required. Outcomes need to capture measures specific not only to the body system, but also level of function and desired goals of individuals.

Outcome Measures Used in Studies of Rehabilitation in Pulmonary Hypertension.

Rationale: The evidence base for rehabilitation in pulmonary hypertension is expanding, but adoption in clinical practice is limited.Objectives: The World Health Organization International Classification for Functioning, Disability and Health identifies three health domains: Body Functions/Structures, Activity and Participation in society. To ensure that the wider impact of rehabilitation in pulmonary hypertension is accurately assessed, it is important that study endpoints reflect all three domains.Methods: A systematic review of the literature was conducted to identify studies of rehabilitation in patients with pulmonary hypertension from 2006 to 2019.Results: Searches across five databases yielded 2,564 articles, of which 34 met eligibility criteria; 50 different outcome measures (mean = 5, minimum = 1, maximum = 9) were identified. When mapped onto the World Health Organization International Classification for Functioning, Disability and Health, 48% of instances of outcome usage were measures of Body Functions/Structure, 33% were measures of Activity, and 18% were measures of Participation. Measures of Participation were not included in seven studies (21%).Conclusions: Studies of rehabilitation in pulmonary hypertension have focused primarily on measures of Body Functions/Structure; the impact in other health domains is not well characterized. Greater inclusion of outcome measures reflecting Activity and Participation in society is needed to allow assessment of the wider impact of rehabilitation in patients with pulmonary hypertension.

Experiences of venue based exercise interventions for people with stroke in the UK: a systematic review and thematic synthesis of qualitative research.

BACKGROUND: The physical benefits of exercise following stroke are research evidenced and the UK stroke population is increasingly encouraged to engage with exercise interventions. A synthesis of qualitative research is required to further understand the perceived experience and psychosocial effect of exercise for people with stroke. OBJECTIVES: To provide a systematic search and synthesis of evidence about the experiences and reported impact of participation in venue based exercise following stroke in the UK. DATA SOURCES: Eligible studies were identified through a rigorous search of Medline, Cinahl, AMED, PsycINFO, SportDiscus, Proquest and ETHOS from January 2000 until December 2017. STUDY ELIGIBILITY CRITERIA: Full text qualitative studies or service evaluations conducted in the UK which explored the reported experience of venue based exercise amongst people with stroke. STUDY SYNTHESIS AND APPRAISAL: Included studies were evaluated through application of the Consolidated Criteria for Reporting Qualitative Research. Data synthesis using a thematic approach generated descriptive and analytical themes. RESULTS: Six research studies and one service evaluation met the inclusion criteria; methodological quality was variable. These studies highlighted that people with stroke gain confidence and renewed identity through exercise participation. Perceived improvements in physical function were reported and participants enjoyed stroke specific exercise programmes in de-medicalised venues. LIMITATIONS: The studies only accessed people who had completed the exercise programmes; non-completers were not represented. CONCLUSION: Venue based exercise programmes have a positive effect on perceived wellbeing following stroke. Further research into the reasons for discontinuation of exercise participation following stroke is required. Systematic Review Registration Number PROSPERO 2017:CRD42017072483.

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.

People with aphasia's perspectives of the therapeutic alliance during speech-language intervention: A Q methodological approach.

Purpose: To identify which elements of the therapeutic alliance are important to people with aphasia (PWA) attending speech-language pathology post-stroke.Method: A Q methodology design was adopted to explore which elements of the therapeutic alliance were valued by PWA. Statements (n = 453) relevant to the research question were extrapolated from the literature and qualitative interviews. A representative sample of statements (n = 38) was identified from the expansive data set. PWA (n = 23) sorted statements hierarchically according to whether they thought the statement was important or unimportant. Completed Q sorts were analysed using a by-person factor analysis.Result: Analysis yielded a five-factor solution, representing five distinct viewpoints: (1) acknowledge me, help me to understand; (2) respect me, listen to me; (3) challenge me, direct me; (4) understand me, laugh with me; and (5) hear me, encourage me.Conclusion: The findings highlight the need for clinicians to adopt a flexible and idiosyncratic approach to therapeutic alliance construction in order to meet the relational needs of a heterogeneous population. This is the first study to use Q methodology with PWA, demonstrating that Q methodology is an effective and viable method for investigating subjectivity in this population.

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.

Exploring a physiotherapy well-being review to deliver community-based rehabilitation in patients with pulmonary hypertension.

BACKGROUND: Highly structured, supervised exercise training has been shown to be beneficial in patients with pulmonary hypertension. Despite evidence of the effectiveness of community-based rehabilitation in other cardiopulmonary diseases, there are limited data in patients with pulmonary hypertension. METHODS: This prospective study evaluated the intervention of a physiotherapist well-being review in patients with pulmonary hypertension who had been established on targeted drug therapy for between 3 and 12 months. The intervention included a detailed consultation assessing functional, social and motivational status to identify individual patient rehabilitation goals and facilitate tailored referrals to community-based services. RESULTS: One hundred and thirty-eight patients (79% pulmonary arterial hypertension, 17% chronic thromboembolic disease), age 67 ± 14 years, diagnosed over a one year period were evaluated between July 2017 and January 2018. Fifty-two per cent of patients were referred to community-based pulmonary rehabilitation programmes, 19% received other forms of community rehabilitation, 17% were given exercise advice, 5% had an assessment of social support and 7% declined any intervention. At the end of the study, 32% of patients were undertaking independent exercise. CONCLUSION: This study has identified that the majority of patients with pulmonary hypertension who are optimised on targeted drug therapy have rehabilitation needs. The use of a physiotherapy well-being review can identify this need and facilitate access to community-based rehabilitation. Further research is required to evaluate the efficacy of such interventions in pulmonary hypertension.

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.