Why do stroke survivors not receive recommended amounts of active therapy? Findings from the ReAcT study, a mixed-methods case-study evaluation in eight stroke units.

OBJECTIVE: To identify why the National Clinical Guideline recommendation of 45 minutes of each appropriate therapy daily is not met in many English stroke units. DESIGN: Mixed-methods case-study evaluation, including modified process mapping, non-participant observations of service organisation and therapy delivery, documentary analysis and semi-structured interviews. SETTING: Eight stroke units in four English regions. SUBJECTS: Seventy-seven patients with stroke, 53 carers and 197 stroke unit staff were observed; 49 patients, 50 carers and 131 staff participants were interviewed. RESULTS: Over 1000 hours of non-participant observations and 433 patient-specific therapy observations were undertaken. The most significant factor influencing amount and frequency of therapy provided was the time therapists routinely spent, individually and collectively, in information exchange. Patient factors, including fatigue and tolerance influenced therapists' decisions about frequency and intensity, typically resulting in adaptation of therapy rather than no provision. Limited use of individual patient therapy timetables was evident. Therapist staffing levels were associated with differences in therapy provision but were not the main determinant of intensity and frequency. Few therapists demonstrated understanding of the evidence underpinning recommendations for increased therapy frequency and intensity. Units delivering more therapy had undertaken patient-focused reorganisation of therapists' working practices, enabling them to provide therapy consistent with guideline recommendations. CONCLUSION: Time spent in information exchange impacted on therapy provision in stroke units. Reorganisation of therapists' work improved alignment with guidelines.

Service users' views of the assessment process in stroke rehabilitation.

OBJECTIVE: To investigate the service users' (stroke survivors and care-givers) experiences and views of the rehabilitation assessment process. DESIGN: Qualitative data analysis from three focus groups using a content analysis to identify the major themes. SETTING: Participants were recruited from stroke support groups and community rehabilitation services in a large UK city. SUBJECTS: Seventeen community-dwelling stroke survivors who had completed their rehabilitation within the previous year and six care-givers. RESULTS: Five themes emerged: understanding the purpose of the assessment; repetition of assessments; feedback about assessments and progress; format of feedback and barriers to feedback. While all participants reported undergoing assessment, some felt their purpose was not always explained and resented unexplained repetitions of tests. Some participants reported a positive experience, but most wanted more information about their progress and predictions of recovery. They wanted regular, consistent, objective information presented in layman's terms; verbally and in writing. Some carers reported difficulty accessing information particularly as a result of confidentiality policies. While some participants accepted these short-comings, others considered them due to staff's disinterest or ineptitude, which undermined their trust in the team. CONCLUSIONS: Stroke service users require clear information about the purpose of assessments and regular, consistent, objective feedback about their progress using layman's language both verbally and in writing.

What influences provision of information about recovery on stroke units? A focused ethnographic case study.

OBJECTIVE: Patients and carers frequently report dissatisfaction with post-stroke information provision. This study aimed to develop an in-depth understanding of the factors influencing provision of information about recovery in stroke units. METHODS: Focused ethnographic case-studies in two UK stroke units, including non-participant observations and semi-structured interviews with professionals, patients and carers, and documentary analysis. A Framework approach to analysis was undertaken. RESULTS: Twenty patients, 17 carers and 47 professionals participated. The unpredictable recovery trajectory led professionals to present prognostic estimates as uncertain possibilities. The need to maintain patients' motivation limited sharing of negative predictions, and generic information over-emphasised the importance of therapy in recovery. A structured multidisciplinary team approach to delivering information improved consistency. Complex clinical reasoning was required to identify and meet patients' needs. Hospital environments and routines restricted opportunities for dialogue, particularly with carers. CONCLUSIONS: The process of providing information about post-stroke recovery is complex, requiring enhanced clinical reasoning and communication. The challenges faced by professionals are numerous and if not addressed can result in suboptimal provision. PRACTICE IMPLICATIONS: Professionals should develop a co-ordinated multidisciplinary approach to information provision; and engage in dialogue to ensure a tailored approach to identifying and meeting patients' and carers' information needs.

RECREATE: a study protocol for a multicentre pilot cluster randomised controlled trial (cRCT) in UK stroke services evaluating an intervention to reduce sedentary behaviour in stroke survivors (Get Set Go) with embedded process and economic evaluations.

INTRODUCTION: Sedentary behaviour (sitting or lying during waking hours without being otherwise active) is strongly associated with adverse health outcomes, including all-cause, cancer and cardiovascular mortality in adults. Stroke survivors are consistently reported as being more sedentary than healthy age-matched controls, spending more hours sedentary daily and sustaining longer unbroken bouts of sedentary time. An evidence-based and clinically feasible intervention ('Get Set Go') was developed. A pragmatic definitive trial to evaluate Get Set Go was planned; however, due to the unprecedented effects of the COVID-19 pandemic on National Health Service (NHS) services this study was reduced in size and scope to become an external pilot trial. We report the protocol for this external pilot trial, which aims to undertake a preliminary exploration of whether Get Set Go is likely to improve ability to complete extended activities of daily living in the first year post-stroke and inform future trial designs in stroke rehabilitation. METHODS AND ANALYSIS: This study is a pragmatic, multicentre, two-arm, external pilot cluster randomised controlled trial with embedded process and economic evaluations. UK-based stroke services will be randomised 1:1 to the intervention (usual care plus Get Set Go) or control (usual care) arm. Fifteen stroke services will recruit 300-400 stroke inpatient and carer participants, with follow-up at 6, 12 and 24 months. The proposed primary endpoint is stroke survivor self-reported Nottingham Extended Activities of Daily Living scale at 12 months. Endpoint analyses will be exploratory and provide preliminary estimates of intervention effect. The process evaluation will provide valuable information on intervention fidelity, acceptability and how it can be optimised. ETHICS AND DISSEMINATION: The study has been approved by Yorkshire and The Humber - Bradford-Leeds Research Ethics Committee (Ref: 19/YH/0403). Results will be disseminated through journal publications and conference presentations. TRIAL REGISTRATION NUMBER: This trial was registered prospectively on 01 April 2020 (ISRCTN ref: ISRCTN82280581).

An intervention to support stroke survivors and their carers in the longer term: results of a cluster randomised controlled feasibility trial (LoTS2Care).

BACKGROUND: To address the limited provision of longer-term stroke care, we conducted a programme of research (LoTS2Care) to develop and test an intervention to form part of a replicable longer-term care strategy. New Start, a programme of facilitated self-management, was developed to be delivered at 6 months post-stroke by trained facilitators. Here, we report the findings from the final workstream of this programme, which aimed to evaluate the feasibility and acceptability of implementing a future definitive cluster randomised controlled trial of the developed intervention (New Start) to support stroke survivors and their carers in the longer term. METHODS: A feasibility cluster randomised controlled trial was conducted in English and Welsh NHS stroke services. Stroke services (clusters) were randomised on a 1:1 basis to implement New Start or continue with usual care only. Community-dwelling stroke survivors between 4 and 6 months post-stroke were invited to participate in the trial by post. Outcome measures were collected via post at 3, 6 and 9 months after recruitment. Recruitment and follow-up rates, delivery and uptake of the intervention, data collection feasibility (including postal outcome measures of health and disability, mental well-being at 3, 6, and 9 months post-recruitment) and safety were assessed. RESULTS: Ten stroke services were recruited. A total of 1127 stroke survivors were screened for participation, and 269 were registered (New Start, n = 145; usual care, n = 124). Retention was high with 239 (89%) stroke survivors being available for follow-up at 9 months, and high return rates of postal questionnaires were achieved (80.3% at 9 months). Intervention training was successfully delivered, and New Start was offered to 95.2% of trial participants in the intervention arm. Uptake was variable, however, ranging from 11.8 to 75.0%. There were no safety concerns. CONCLUSIONS: Stroke service recruitment and longer-term stroke survivor postal recruitment and outcome data collection are feasible; however, refinement of intervention targeting and delivery is required prior to undertaking a definitive trial. TRIAL REGISTRATION: ISRCTN38920246. Registered 22 June 2016 ( http://www.isrctn.com/ISRCTN38920246 ).

Experiences and views of receiving and delivering information about recovery in acquired neurological conditions: a systematic review of qualitative literature.

OBJECTIVE: To review and synthesise qualitative literature relating to the views, perceptions and experiences of patients with acquired neurological conditions and their caregivers about the process of receiving information about recovery; as well as the views and experiences of healthcare professionals involved in delivering this information. DESIGN: Systematic review of qualitative studies. DATA SOURCES: MEDLINE, Embase, AMED, CINAHL, PsycINFO, Web of Science and the Cochrane library were searched from their inception to July 2019. DATA EXTRACTION AND SYNTHESIS: Two reviewers extracted data from the included studies and assessed quality using an established tool. Thematic synthesis was used to synthesise the findings of included studies. RESULTS: Searches yielded 9105 titles, with 145 retained for full-text screening. Twenty-eight studies (30 papers) from eight countries were included. Inductive analysis resulted in 11 descriptive themes, from which 5 analytical themes were generated: the right information at the right time; managing expectations; it's not what you say, it's how you say it; learning how to talk about recovery and manage emotions; the context of uncertainty. CONCLUSIONS: Our findings highlight the inherent challenges in talking about recovery in an emotional context, where breaking bad news is a key feature. Future interventions should focus on preparing staff to meet patients' and families' information needs, as well as ensuring they have the skills to discuss potential recovery and break bad news compassionately and share the uncertain trajectory characteristic of acquired neurological conditions. An agreed team-based approach to talking about recovery is recommended to ensure consistency and improve the experiences of patients and their families.

An intervention to support stroke survivors and their carers in the longer term (LoTS2Care): study protocol for the process evaluation of a cluster randomised controlled feasibility trial.

BACKGROUND: Whilst pathways relating to the early stages of stroke care have become well established, strategies for longer-term care are less developed and longer-term outcomes remain poor for many stroke survivors. New Start, a complex intervention that includes needs identification, exploration of social networks and components of problem-solving and self-management, was designed to improve stroke survivors' quality of life by addressing unmet needs and increasing participation. It is delivered approximately 6 months post-stroke by trained staff (facilitators). We are currently undertaking a cluster randomised feasibility trial of the New Start intervention with an embedded process evaluation, which is an important component of the design and testing of complex interventions as it provides an understanding of how interventions are delivered and function in different settings. METHODS/DESIGN: This mixed methods process evaluation will explore the degree to which New Start is implemented as intended, the impact of context on intervention delivery and the acceptability of the intervention for stroke survivors, their families and practitioners. It will include non-participant observation of facilitator training and intervention delivery. Interviews with stroke survivors, facilitators and other relevant staff (including administrators and managerial staff) will be undertaken. Qualitative data from interview transcripts, facilitator reflections and observational field notes will be analysed thematically alongside numerical data documenting intervention delivery collected as part of the trial. DISCUSSION: This process evaluation will identify factors that aid and impede implementation of the New Start intervention and improve understanding of this novel approach to longer-term stroke care. TRIAL REGISTRATION: ISRCTN Registry, ISRCTN38920246 . Registered on 22 June 2016.

Staff perceptions of using outcome measures in stroke rehabilitation.

PURPOSE: The use of standardised outcome measures is an integral part of stroke rehabilitation and is widely recommended as good practice. However, little is known about how measures are actually used or their impact. This study aimed to identify current clinical practice; how healthcare professionals working in stroke rehabilitation use outcome measures and their perceptions of the benefits and barriers to use. METHOD: Eighty-four Health Care Professionals and 12 service managers and commissioners working in stroke services across a large UK county were surveyed by postal questionnaire. RESULTS: Ninety-six percent of clinical respondents used at least one measure, however, less than half used measures regularly during a patient's stay. The mean number of tools used was 3.2 (SD = 1.9). Eighty-one different tools were identified; 16 of which were unpublished and unvalidated. Perceived barriers in using outcome measures in day-to-day clinical practice included lack of resources (time and training) and lack of knowledge of appropriate measures. Benefits identified were to demonstrate the effectiveness of rehabilitation interventions and monitor patients' progress. CONCLUSIONS: Although the use of outcome measures is prevalent in clinical practice, there is little consistency in the tools utilised. The term "outcome measures" is used, but staff rarely used the measures at appropriate time points to formally assess and evaluate outcome. The term "measurement tool" more accurately reflects the purposes to which they were put and potential benefits. Further research to overcome the barriers in using standardised measurement tools and evaluate the impact of implementation on clinical practice is needed. IMPLICATIONS FOR REHABILITATION: • Health professionals working in stroke rehabilitation should work together to agree when and how outcome measures can be most effectively used in their service. • Efforts should be made to ensure that standardised tools are used to measure outcome at set time-points during rehabilitation, in order to achieve the anticipated benefits. • Communication between service providers and commissioners could be improved to highlight the barriers in using standardised measures of outcome.