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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., Competing Interests: Declaration of Competing Interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests:Louisa-Jane Burton reports financial support was provided by The Stroke Association. Louisa-Jane Burton, Anne Forster, Thomas F Crocker report a relationship with Leeds Hospitals Charity that includes: funding grants. Anne Forster and Thomas F Crocker declare the following activity which may be considered a potential competing interest: authorship of the Cochrane review ’Information provision for stroke survivors and their carers’. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Background and Objectives: Apathy is one of the most common symptoms following stroke and is often associated with worse functional outcome and poor quality of life (QoL). The trajectory of apathy symptoms has been previously described, and different trajectories have been identified. We determined group and individual changes in apathy symptomatology from the acute phase until 1 year after stroke. We also examined the association of apathy and depression with disability and QoL 1 year after stroke., Methods: We measured apathy in a cohort of ischemic stroke survivors at 4 time points from 0 to 12 months after stroke. The Apathy Evaluation Scale (AES) and Dimensional Apathy Scale (DAS) were administered at each time point. Where possible we obtained apathy measured from carers. Depression was assessed with the Geriatric Depression Scale (GDS). Disability and QoL were assessed with the modified Rankin Scale (mRS) and 36-Item Short Form Survey (SF-36). We examined the cross-sectional and individual trajectory of apathy symptoms in each dimension and looked at associations of apathy and depression soon after stroke with mRS and SF-36 at 1 year., Results: Of 200 participants enrolled, 165 completed apathy measures at 12 months. Patient-rated apathy scores increased in both tests at the group level (AES: χ 2 (3) = 9.86, p = 0.019; DAS: χ 2 (3) = 8.49, p = 0.037) and individual level (AES: β = 0.13, p = 0.002; DAS β = 0.13, p = 0.005; DAS: executive β = 0.08, p < 0.001). By contrast, carer-rated apathy did not significantly increase (AES: χ 2 (3) = 0.75, p = 0.862; DAS: χ 2 (3) = 2.45, p = 0.484). Apathy scores were associated with worse mRS and SF-36, although most associations were no longer significant when controlling for depression. GDS was associated with worse mRS and SF-36 after controlling for covariates and apathy (mRS: β = 0.08, p = 0.006; SF-36 Mental Component Summary: β = -1.53, p < 0.001; SF-36 Physical Component Summary: β = -0.57, p = 0.016)., Discussion: Self-reported apathy progressively increases after stroke, especially in the executive dimension. Apathy is associated with worse QoL and greater disability, although some of these associations might be mediated by depression.

Introduction: Stroke survivors spend long periods of time engaging in sedentary behaviour (SB) even when their functional recovery is good. In the RECREATE programme, an intervention aimed at reducing SB ('Get Set Go') will be implemented and evaluated in a pragmatic external pilot cluster randomised controlled trial with embedded process and economic evaluations. We report the protocol for the process evaluation which will address the following objectives: (1) describe and clarify causal assumptions about the intervention, and its mechanisms of impact; (2) assess implementation fidelity; (3) explore views, perceptions and acceptability of the intervention to staff, stroke survivors and their carers; (4) establish the contextual factors that influence implementation, intervention mechanisms and outcomes., Methods and Analysis: This pilot trial will be conducted in 15 UK-based National Health Service stroke services. This process evaluation study, underpinned by the Medical Research Council guidance, will be undertaken in six of the randomised services (four intervention, two control). Data collection includes the following: observations of staff training sessions, non-participant observations in inpatient and community settings, semi-structured interviews with staff, patients and carers, and documentary analysis of key intervention components. Additional quantitative implementation data will be collected in all sites. Training observations and documentary analysis data will be summarised, with other observational and interview data analysed using thematic analysis. Relevant theories will be used to interpret the findings, including the theoretical domains framework, normalisation process theory and the theoretical framework of acceptability. Anticipated outputs include the following: recommendations for intervention refinements (both content and implementation); a revised implementation plan and a refined logic model., Ethics and Dissemination: The study was approved by Yorkshire & The Humber - Bradford Leeds Research Ethics Committee (REC reference: 19/YH/0403). Findings will be disseminated via peer review publications, and national and international conference presentations., Trial Registration Number: ISRCTN82280581., Competing Interests: Competing interests: AFo, AFa, CE, CFF, GM and DJC are coinvestigators on the grant funding this work therefore are partially supported by the National Institute for Health and Social Care Research (NIHR) (grant number RP-PG-0615-20019). AFo has received additional research grant support from NIHR through the following funding streams: senior Investigator award, Health Technology Assessment (HTA) and Health and Social Care Delivery Research (HS&DR). AFo has previously received support from the Stroke Association to attend the UK stroke forum and received payment from the National Institute for Health (USA) for panel membership (2021, 2022). AFo is currently the chair/a member of programme steering committees for NIHR research programmes (grant reference numbers: NIHR 202339, NIHR 202020) and has served on the following panels: NIHR Doctoral Fellowships, NIHR senior investigators committee (2019/20), NIHR HS&DR committee (2016–2018) and Stroke Association Funding. CE has received grant funding from the Netherlands Organisation for Scientific Research (NOW) Taskforce for Applied Research (SIA RAAK) for work in a similar area (ie, sitting less and moving more after stroke) and is a non-executive director representing interests of Research and Chair of Research Advisory Committee for the Stroke Foundation of Australia (unpaid). CFF is a coinvestigator/collaborator on other grants on the topic of sedentary behaviour/physical activity and is therefore partially supported by grant funding received from the University of Edinburgh and the Irish Health Board. CE has previously been supported to conduct work in a similar area by grant funding received from the Chief Scientist Office of the Scottish Government, Medical Research Council Public Health Intervention Development award and the University of Edinburgh. JFJ, LAM, RS, RM, JA, SO and DJC report no competing interests related to the manuscript., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: This scoping review explores the role of a healthcare assistant on a stroke unit, potential barriers to role fulfilment and whether stroke-specific training could enhance rehabilitative practice., Data Sources: Searches were conducted on CINAHL, MEDLINE and APA PsycInfo in May 2021 and repeated in September 2022., Methods: This scoping review was guided by Arksey and O'Malley's framework. Article selection and data extraction were conducted by one researcher using a structured proforma. A narrative approach to data synthesis was undertaken following the research questions., Results: From a combined total of 533 articles, sixty-six full-text articles were assessed for eligibility. Sixteen full articles were included in this review. A healthcare assistants' role was viewed as caring directly for patients - some individuals felt they contributed to rehabilitation during these tasks, and that they could be undervalued by multidisciplinary team members, patients and their families. The barriers identified to healthcare assistants' role fulfilment were lack of time, training and staffing shortages. Training was perceived to improve healthcare assistants' communication, confidence and knowledge but training needed to be flexible, ward based and accommodate staffing shortages. However, it is unclear whether training has any clinical benefit for patients., Conclusion: Healthcare assistants are well placed to enhance rehabilitative practice with patients; however, there are clear perceived barriers to this occurring. Future research should aim to define the role of healthcare assistants and explore whether further stroke-specific training could cause clinical benefits for patients.

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)., Competing Interests: Competing interests: AFo has received additional research grant support from NIHR through the following funding streams: Senior Investigator award, Health Technology Assessment and Health and Social Care Delivery Research (HS&DR). AFo has previously received support from the Stroke Association to attend the UK stroke forum and received payment from the National Institute for Health (USA) for panel membership (2021 and 2022). AFo is currently the chair/a member of the programme steering committees for NIHR research programmes (Grant reference numbers: NIHR 202339 and NIHR 202020) and has served on the following panels: NIHR Doctoral Fellowships, NIHR senior investigators committee (2019/2020), NIHR HS&DR committee (2016–2018) and Stroke Association Funding. CE has received grant funding from the Netherlands Organisation for Scientific Research (NOW) Taskforce for Applied Research (SIA RAAK) for work in a similar area (ie, sitting less and moving more after stroke) and is a non-executive Director representing interests of Research and Chair of Research Advisory Committee for the Stroke Foundation of Australia (unpaid). CFF is a co-investigator/collaborator on other grants on the topic of sedentary behaviour/physical activity and is therefore partially supported by grant funding received from the University of Edinburgh and the Irish Health Board. CE has previously been supported to conduct work in a similar area by grant funding received from the Chief Scientist Office of the Scottish Government, Medical Research Council Public Health Intervention Development award and the University of Edinburgh., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.)

Purpose: Sedentary behaviour (SB) is associated with negative health outcomes and is prevalent post-stroke. This study explored SB after stroke from the perspective of stroke service staff., Methods: Qualitative mixed-methods study. Non-participant observations in two stroke services (England/Scotland) and semi-structured interviews with staff underpinned by the COM-B model of behaviour change. Observations were analysed thematically; interviews were analysed using the Framework approach., Results: One hundred and thirty-two observation hours (October - December 2017), and 31 staff interviewed (January -June 2018). Four themes were identified: (1) Opportunities for staff to support stroke survivors to reduce SB; (2) Physical and psychological capability of staff to support stroke survivors to reduce SB; (3) Motivating factors influencing staff behaviour to support stroke survivors to reduce SB; (4) Staff suggestions for a future intervention to support stroke survivors to reduce SB., Conclusions: Staff are aware of the consequences of prolonged sitting but did not relate to SB. Explicit knowledge of SB was limited. Staff need training to support stroke survivors to reduce SB. Sedentary behaviour in the community was not reported to change markedly, highlighting the need to engage stroke survivors in movement from when capable in hospital, following through to home.Implications for rehabilitationStroke survivor sedentary behaviour is influenced, directly and indirectly, by the actions and instructions of stroke service staff in the inpatient and community setting.The built and social environment, both in the inpatient and community settings, may limit opportunities for safe movement and can result in stroke survivors spending more time sedentary.Stroke service staff appreciate the benefit of encouraging stroke survivors to stand and move more, if it is safe for them to do so.Staff would be amenable to encourage stroke survivors to reduce sedentary behaviour, provided they have the knowledge and resources to equip them to support this.

Background: Self-management is a promising approach to improve quality of life after stroke. However, evidence for the appropriateness and effectiveness of self-management for stroke survivors with aphasia is limited. This article reports on the process used to develop a supported self-management intervention for stroke survivors with aphasia (SSWA) using co-production and behaviour change theory. Preparatory research included systematic reviews, and qualitative interviews and focus groups with SSWA, family members and speech and language therapists (SLTs)., Materials and Methods: We conducted six, 2 hour long intervention development workshops with key stakeholders. The workshops were informed by principles of co-production and the intervention development process outlined by the Behaviour Change Wheel (BCW). We also incorporated the findings of our preparatory research within workshops. Each workshop included an introduction, 1-2 co-production tasks and time for feedback at the end of the session. Data were analysed on an ongoing basis so that findings could be used to feed in to subsequent workshops and intervention development., Results: Workshop participants (n = 12) included; SSWA (n = 5), family members (n = 3) and SLTs (n = 4). Together, participants engaged with accessible and participatory co-production tasks which aligned with the BCW framework. Participants engaged in discussion to define self-management in behavioural terms (behavioural diagnosis) and to identify what needed to change to support self-management. Participant's co-produced solutions for supporting self-management and discussed options to implement these in practice. Prototype materials were generated by the research team and evaluated by participants. Intervention functions and behaviour change techniques (BCTs) were mapped to the solutions generated by participants by the research team, after the final workshop. A supported self-management intervention for SSWA was developed which will be delivered by SLTs through community stroke services., Conclusions: This paper reports the process we used to integrate co-production work with behaviour change theory to develop a complex self-management intervention. This is of relevance for researchers looking to harness the strengths of co-production methods and theory in intervention design. Future research will feasibility test the supported self-management intervention developed. This paper provides transparency to our intervention development process which will help others to better interpret the findings of our feasibility work., Competing Interests: The authors have declared that no competing interests exist.

Background: A stroke is a sudden loss of brain function caused by lack of blood supply. Stroke can lead to death or physical and cognitive impairment and can have long lasting psychological and social implications. Research shows that stroke survivors and their families are dissatisfied with the information provided and have a poor understanding of stroke and associated issues., Objectives: The primary objective is to assess the effects of active or passive information provision for stroke survivors (people with a clinical diagnosis of stroke or transient ischaemic attack (TIA)) or their identified carers. The primary outcomes are knowledge about stroke and stroke services, and anxiety., Search Methods: We updated our searches of the Cochrane Stroke Group Specialised Register on 28 September 2020 and for the following databases to May/June 2019: the Cochrane Central Register of Controlled Trials (CENTRAL; 2019, Issue 5) and the Cochrane Database of Systematic Reviews (CDSR; 2019, Issue 5) in the Cochrane Library (searched 31 May 2019), MEDLINE Ovid (searched 2005 to May week 4, 2019), Embase Ovid (searched 2005 to 29 May 2019), CINAHL EBSCO (searched 2005 to 6 June 2019), and five others. We searched seven study registers and checked reference lists of reviews., Selection Criteria: Randomised trials involving stroke survivors, their identified carers or both, where an information intervention was compared with standard care, or where information and another therapy were compared with the other therapy alone, or where the comparison was between active and passive information provision without other differences in treatment., Data Collection and Analysis: Two review authors independently assessed trial eligibility and risk of bias, and extracted data. We categorised interventions as either active information provision or passive information provision: active information provision included active participation with subsequent opportunities for clarification and reinforcement; passive information provision provided no systematic follow-up or reinforcement procedure. We stratified analyses by this categorisation. We used GRADE methods to assess the overall certainty of the evidence., Main Results: We have added 12 new studies in this update. This review now includes 33 studies involving 5255 stroke-survivor and 3134 carer participants. Twenty-two trials evaluated active information provision interventions and 11 trials evaluated passive information provision interventions. Most trials were at high risk of bias due to lack of blinding of participants, personnel, and outcome assessors where outcomes were self-reported. Fewer than half of studies were at low risk of bias regarding random sequence generation, concealment of allocation, incomplete outcome data or selective reporting. The following estimates have low certainty, based on the quality of evidence, unless stated otherwise. Accounting for certainty and size of effect, analyses suggested that for stroke survivors, active information provision may improve stroke-related knowledge (standardised mean difference (SMD) 0.41, 95% confidence interval (CI) 0.17 to 0.65; 3 studies, 275 participants), may reduce cases of anxiety and depression slightly (anxiety risk ratio (RR) 0.85, 95% CI 0.68 to 1.06; 5 studies, 1132 participants; depression RR 0.83, 95% CI 0.68 to 1.01; 6 studies, 1315 participants), may reduce Hospital Anxiety and Depression Scale (HADS) anxiety score slightly, (mean difference (MD) -0.73, 95% CI -1.10 to -0.36; 6 studies, 1171 participants), probably reduces HADS depression score slightly (MD (rescaled from SMD) -0.8, 95% CI -1.27 to -0.34; 8 studies, 1405 participants; moderate-certainty evidence), and may improve each domain of the World Health Organization Quality of Life assessment short-form (WHOQOL-BREF) (physical, MD 11.5, 95% CI 7.81 to 15.27; psychological, MD 11.8, 95% CI 7.29 to 16.29; social, MD 5.8, 95% CI 0.84 to 10.84; environment, MD 7.0, 95% CI 3.00 to 10.94; 1 study, 60 participants). No studies evaluated positive mental well-being. For carers, active information provision may reduce HADS anxiety and depression scores slightly (MD for anxiety -0.40, 95% CI -1.51 to 0.70; 3 studies, 921 participants; MD for depression -0.30, 95% CI -1.53 to 0.92; 3 studies, 924 participants), may result in little to no difference in positive mental well-being assessed with Bradley's well-being questionnaire (MD -0.18, 95% CI -1.34 to 0.98; 1 study, 91 participants) and may result in little to no difference in quality of life assessed with a 0 to 100 visual analogue scale (MD 1.22, 95% CI -7.65 to 10.09; 1 study, 91 participants). The evidence is very uncertain (very low certainty) for the effects of active information provision on carers' stroke-related knowledge, and cases of anxiety and depression. For stroke survivors, passive information provision may slightly increase HADS anxiety and depression scores (MD for anxiety 0.67, 95% CI -0.37 to 1.71; MD for depression 0.39, 95% CI -0.61 to 1.38; 3 studies, 227 participants) and the evidence is very uncertain for the effects on stroke-related knowledge, quality of life, and cases of anxiety and depression. For carers, the evidence is very uncertain for the effects of passive information provision on stroke-related knowledge, and HADS anxiety and depression scores. No studies of passive information provision measured carer quality of life, or stroke-survivor or carer positive mental well-being., Authors' Conclusions: Active information provision may improve stroke-survivor knowledge and quality of life, and may reduce anxiety and depression. However, the reductions in anxiety and depression scores were small and may not be important. In contrast, providing information passively may slightly worsen stroke-survivor anxiety and depression scores, although again the importance of this is unclear. Evidence relating to carers and to other outcomes of passive information provision is generally very uncertain. Although the best way to provide information is still unclear, the evidence is better for strategies that actively involve stroke survivors and carers and include planned follow-up for clarification and reinforcement., (Copyright © 2021 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.)

Background: Stroke survivors are more sedentary than healthy, age-matched controls, independent of functional capacity. Interventions are needed to encourage a reduction in overall sedentary time, and regular breaks in prolonged periods of sedentary behaviour. This study captured the views and experiences of stroke survivors and their caregivers related to sedentary behaviour after stroke, to inform the development of an intervention to reduce sedentary behaviour., Methods: Mixed-methods qualitative study. Non-participant observations were completed in two stroke services, inclusive of inpatient and community settings in the United Kingdom. Semi-structured interviews were conducted with stroke survivors and their caregivers (if available) at six- or nine-months post-stroke. Underpinned by the capability, opportunity and motivation (COM-B) model of behaviour change, observational data (132 h) were analysed thematically and interview data (n = 31 stroke survivors, n = 12 caregivers) were analysed using the Framework approach., Results: Observation participants differed in functional ability whereas stroke survivor interviewees were all ambulant. Six themes related to sedentary behaviour after stroke were generated: (1) sedentary behaviour levels and patterns after stroke; (2) the physical and social environment in the stroke service and in the home; (3) standing and movement capability after stroke; (4) emotion and motivation after stroke; (5) caregivers' influence on, and role in influencing stroke survivors' sedentary behaviour; and (6) intervening to reduce sedentary behaviour after stroke. Capability, opportunity and motivation were influenced by the impact of the stroke and caregivers' inclination to support sedentary behaviour reduction. Stroke survivors reported being more sedentary than they were pre-stroke due to impaired balance and co-ordination, increased fatigue, and reduced confidence in mobilising. Caregivers inclination to support stroke survivors to reduce sedentary behaviour depended on factors including their willingness to withdraw from the caregiver role, and their perception of whether the stroke survivor would act on their encouragement., Conclusions: Many stroke survivors indicate being open to reducing sedentary behaviour, with appropriate support from stroke service staff and caregivers. The findings from this study have contributed to an intervention development process using the Behaviour Change Wheel (BCW) approach to develop strategies to reduce sedentary behaviour after stroke.

Background: Burden is well documented among carers of stroke survivors, yet current evidence is insufficient to determine if any strategies reduce this negative outcome. Existing interventions for carers of stroke survivors typically involve supporting carers according to their individual needs through face-to-face interactions and provision of information including workbooks or educational guides. To date, no interventions have been developed using a method which systematically incorporates evidence, behaviour change theories, and stakeholder involvement to change the behaviours of carers and relevant individuals who support carers. This study aimed to develop a programme plan for a theory and evidence-based intervention to reduce burden in carers of stroke survivors., Methods: Informed by evidence from two systematic reviews and 33 qualitative interviews, the first four stages of Intervention Mapping were used to guide the intervention development process: 1) needs assessment; 2) identifying outcomes and objectives; 3) selecting theoretical methods and practical applications; and 4) creating a programme plan. Structured and facilitated involvement from stakeholders, including carers, researchers, and professionals from health and community services was integral to the intervention development process. Stakeholders helped to prioritise the focus of the intervention, develop the goals, outcomes and objectives for the programme, and generate and refine intervention ideas., Results: Stakeholders prioritised the need for carers to feel prepared before and during the transition from hospital to home as key to reducing burden. The proposed intervention 'Preparing is Caring' targets this need and involves providing and signposting carers to relevant information and support for practical and emotional needs. This is to be delivered before, during, and immediately after the stroke survivor's transition from hospital to home by a person taking on a single point of contact role. It is comprised of multiple theory-based components including: training packages for information and support providers working with carers and wider staff teams, plus elements to support carers to feel prepared., Conclusions: We have developed a comprehensive programme plan for a multiple-component, theory and evidence informed behaviour change intervention aimed at preparing carers before and during the transition from hospital to home. Future work is required to refine, implement and evaluate the Preparing is Caring intervention.

Background: Interest in how stroke survivors might be better supported to manage life after stroke has grown rapidly in recent years, with a particular emphasis on enabling 'self-management'. Post-stroke communication difficulties may pose a unique barrier to longer term adaptation and adjustment. It is important to understand how stroke survivors with communication difficulties manage life after stroke and what support may be needed to facilitate this process., Aims: To explore how stroke survivors with communication difficulties manage life after stroke in the first year., Methods & Procedures: A cross-sectional qualitative study involving in-depth semi-structured interviews with stroke survivors with communication difficulties (aphasia, dysarthria or apraxia of speech) and/or their family members at single time points during the first year post-stroke. A total of 21 participants (14 stroke survivors and seven family members) took part in interviews for the study. Interview data were analysed using thematic analysis., Outcome & Results: A total of six themes were identified: (1) strategies to manage changes to communication; (2) testing communication outside of the home; (3) balancing support and independence; (4) hope for recovery; (5) obtaining support from healthcare professionals; and (6) adapting activities and keeping busy. Stroke survivors with communication difficulties and their family members undertook significant work (practical, relational, emotional) to manage their condition. Adaptation and adjustment was often facilitated by 'doing'; testing out which activities could be managed independently and which required additional support. Some stroke survivors and their family members demonstrated considerable resourcefulness and creativity in developing strategies to manage their communication difficulties. Despite the work undertaken, many expressed a lack of confidence in their ability and feelings of powerlessness and abandonment at the point of discharge from community services., Conclusions & Implications: Stroke survivors and their family members develop personally meaningful and context-specific strategies to adjust to and manage life after stroke. Future interventions should recognize, support and build upon the active work already undertaken by stroke survivors with communication difficulties and their families. Further support before and around the point of discharge from community services may be needed to help build confidence and skills to manage in the longer term. The benefit of a supported self-management approach for stroke survivors with communication difficulties should be further investigated., (© 2019 Royal College of Speech and Language Therapists.)

Over the last 10 years, evidence has emerged that too much sedentary time (e.g. time spent sitting down) has adverse effects on health, including an increased risk of cardiovascular disease incidence and mortality. A considerable amount of media attention has been given to the topic. The current UK activity guidelines recommend that all adults should minimize the amount of time spent being sedentary for extended periods. How best to minimize sedentary behavior is a focus of ongoing research. Understanding the impact of sedentary behaviors on the health of people with stroke is vital as they are some of the most sedentary individuals in society. Implementing strategies to encourage regular, short breaks in sedentary behaviors has potential to improve health outcomes after stroke. Intervention work already conducted with adults and older adults suggests that sedentary behaviors can be changed. A research priority is to explore the determinants of sedentary behavior in people with stroke and to develop tailored interventions.

Background: Training family carers to provide evidence-based rehabilitation to stroke patients could address the recognized deficiency of access to stroke rehabilitation in low-resource settings. However, our randomized controlled trial in India (ATTEND) found that this model of care was not superior to usual care alone., Aims: This process evaluation aimed to better understand trial outcomes through assessing trial implementation and exploring patients', carers', and providers' perspectives., Methods: Our mixed methods study included process, healthcare use data and patient demographics from all sites; observations and semi-structured interviews with participants (22 patients, 22 carers, and 28 health providers) from six sampled sites., Results: Intervention fidelity and adherence to the trial protocol was high across the 14 sites; however, early supported discharge (an intervention component) was not implemented. Within both randomized groups, some form of rehabilitation was widely accessed. ATTEND stroke coordinators provided counseling and perceived that sustaining patients' motivation to continue with rehabilitation in the face of significant emotional and financial stress as a key challenge. The intervention was perceived as an acceptable community-based package with education as an important component in raising the poor awareness of stroke. Many participants viewed family-led rehabilitation as a necessary model of care for poor and rural populations who could not access rehabilitation., Conclusion: Difficulty in sustaining patient and carer motivation for rehabilitation without ongoing support, and greater than anticipated access to routine rehabilitation may explain the lack of benefit in the trial. Nonetheless, family-led rehabilitation was seen as a concept worthy of further development.

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.

Background: Despite the evidence that many stroke survivors report longer term unmet needs, the provision of longer term care is limited. To address this, we are conducting a programme of research to develop an evidence-based and replicable longer term care strategy. The developed complex intervention (named New Start), which includes needs identification, exploration of social networks and components of problem solving and self-management, was designed to improve quality of life by addressing unmet needs and increasing participation., Methods/design: A multicentre, cluster randomised controlled feasibility trial designed to inform the design of a possible future definitive cluster randomised controlled trial (cRCT) and explore the potential clinical and cost-effectiveness of New Start. Ten stroke services across the UK will be randomised on a 1:1 basis either to implement New Start or continue with usual care only. New Start will be delivered by trained facilitators and will be offered to all stroke survivors within the services allocated to the intervention arm. Stroke survivors will be eligible for the trial if they are 4-6 months post-stroke and residing in the community. Carers (if available) will also be invited to take part. Invitation to participate will be initiated by post and outcome measures will be collected via postal questionnaires at 3, 6 and 9 months after recruitment. Outcome data relating to perceived health and disability, wellbeing and quality of life as well as unmet needs will be collected. A 'study within a trial' (SWAT) is planned to determine the most acceptable format in which to provide the postal questionnaires. Details of health and social care service usage will also be collected to inform the economic evaluation. The feasibility of recruiting services and stroke survivors to the trial and of collecting postal outcomes will be assessed and the potential for effectiveness will be investigated. An embedded process evaluation (reported separately) will assess implementation fidelity and explore and clarify causal assumptions regarding implementation., Discussion: This feasibility trial with embedded process evaluation will allow us to gather important and detailed data regarding methodological and implementation issues to inform the design of a possible future definitive cRCT of this complex intervention., Trial Registration: ISRCTN38920246 . Registered 22 June 2016.

Purpose: To systematically review self-management interventions to determine their efficacy for people with stroke in relation to any health outcome and to establish whether stroke survivors with aphasia were included., Method: We searched MEDLINE, EMBASE, PsycINFO, CINAHL, The Cochrane Library, and IBSS and undertook gray literature searches. Randomized controlled trials were eligible if they included stroke survivors aged 18 + in a "self-management" intervention. Data were extracted by two independent researchers and included an assessment of methodological quality., Results: 24 studies were identified. 11 out of 24 reported statistically significant benefits in favor of self-management. However, there were significant limitations in terms of methodological quality, and meta-analyses (n= 8 studies) showed no statistically significant benefit of self-management upon global disability and stroke-specific quality of life at 3 months or ADL at 3 or 6 months follow-up. A review of inclusion and exclusion criteria showed 11 out of 24 (46%) studies reported total or partial exclusion of stroke survivors with aphasia. Four out of 24 (17%) reported the number of stroke survivors with aphasia included. In nine studies (38%) it was unclear whether stroke survivors with aphasia were included or excluded., Conclusions: Robust conclusions regarding the effectiveness of poststroke self-management approaches could not be drawn. Further trials are needed, these should clearly report the population included. Implications for rehabilitation There is a lack of evidence to demonstrate the effectiveness of self-management approaches for stroke survivors. It is unclear whether self-management approaches are suitable for stroke survivors with aphasia, particularly those with moderate or severe aphasia. Further research is needed to understand the optimal timing for self-management in the stroke pathway and the format in which self-management support should be offered.

Background Information on ethnic disparities in stroke between White and Pakistani population in Europe is scarce. Bradford District has the largest proportion of Pakistani people in England; this provides a unique opportunity to study the difference in stroke between the two major ethnic groups. Aim To determine the first-ever-stroke incidence and examine the disparities in stroke patterns between Whites and Pakistanis in Bradford. Methods Prospective 12 months study consisting of 273,327 adults (≥18 years) residents. Stroke cases were identified by multiple overlapping approaches. Results In the study period, 541 first-ever-strokes were recorded. The crude incidence rate was 198 per 100,000 person-years. Age adjusted-standardized rate to the World Health Organization world population of first-ever-stroke is 155 and 101 per 100,000 person-years in Pakistanis and Whites respectively. Four hundred and thirty-eight patients (81%) were Whites, 83 (15.3%) were Pakistanis, 11 (2%) were Indian and Bangladeshis, and 9 (1.7%) were of other ethnic origin. Pakistanis were significantly younger and had more obesity ( p = 0.049), and diabetes mellitus (DM) ( p = <0.001). They were less likely to suffer from atrial fibrillation ( p = <0.001), be ex- or current smokers ( p = <0.001), and drink alcohol above the recommended level ( p = 0.007) compared with Whites. In comparison with Whites, higher rates of age-adjusted stroke (1.5-fold), lacunar infarction (threefold), and ischemic infarction due to large artery disease (twofold) were found in the Pakistanis. Conclusions The incidence of first-ever-stroke is higher in the Pakistanis compared with the Whites in Bradford, UK. Etiology and vascular risk factors vary between the ethnic groups. This information should be considered when investigating stroke etiology, and when planning prevention and care provision to improve outcomes after stroke.

Stroke can lead to physiological and psychological impairments and impact individuals' physical activity (PA), fatigue and sleep patterns. We analysed wrist-worn accelerometry data and the Fatigue Assessment Scale from 41 stroke survivors following a physical rehabilitation programme, to examine relationships between PA levels, fatigue and sleep. Validated acceleration thresholds were used to quantify time spent in each PA intensity/sleep category. Stroke survivors performed less moderate to vigorous PA (MVPA) in 10 minute bouts than the National Stroke guidelines recommend. Regression analysis revealed associations at baseline between light PA and fatigue (p = 0.02) and MVPA and sleep efficiency (p = 0.04). Light PA was positively associated with fatigue at 6 months (p = 0.03), whilst sleep efficiency and fatigue were associated at 9 months (p = 0.02). No other effects were shown at baseline, 6 or 9 months. The magnitude of these associations were small and are unlikely to be clinically meaningful. Larger trials need to examine the efficacy and utility of accelerometry to assess PA and sleep in stroke survivors.

Objectives: To assess acceptability and feasibility of trial processes and the Rehabilitation Training (ReTrain) intervention including an assessment of intervention fidelity., Design: A two-group, assessor-blinded, randomised controlled trial with parallel mixed methods process and economic evaluations., Setting: Community settings across two sites in Devon., Participants: Eligible participants were: 18 years old or over, with a diagnosis of stroke and with self-reported mobility issues, no contraindications to physical activity, discharged from National Health Service or any other formal rehabilitation programme at least 1 month before, willing to be randomised to either control or ReTrain and attend the training venue, possessing cognitive capacity and communication ability sufficient to participate. Participants were individually randomised (1:1) via a computer-generated randomisation sequence minimised for time since stroke and level of functional disability. Only outcome assessors independent of the research team were blinded to group allocation., Interventions: ReTrain comprised (1) an introductory one-to-one session; (2) ten, twice-weekly group classes with up to two trainers and eight clients; (3) a closing one-to-one session, followed by three drop-in sessions over the subsequent 3 months. Participants received a bespoke home-based training programme. All participants received treatment as usual. The control group received an exercise after stroke advice booklet., Outcome Measures: Candidate primary outcomes included functional mobility and physical activity., Results: Forty-five participants were randomised (ReTrain=23; Control=22); data were available from 40 participants at 6 months of follow-up (ReTrain=21; Control=19) and 41 at 9 months of follow-up (ReTrain=21; Control=20). We demonstrated ability to recruit and retain participants. Participants were not burdened by the requirements of the study. We were able to calculate sample estimates for candidate primary outcomes and test procedures for process and health economic evaluations., Conclusions: All objectives were fulfilled and indicated that a definitive trial of ReTrain is feasible and acceptable., Trial Registration Number: NCT02429180; Results., Competing Interests: Competing interests: Dean reports grants from The Stroke Association, during the conduct of the study; other from Wiley Blackwell, outside the submitted work; Forster, Poltawski, Spencer, Taylor, James, Allison, Stevens, Pulsford and Norris report grants from the Stroke Association; Calitri, Landa, Hollands, Shepherd were employed by the Stroke Association grant., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Recent reviews have demonstrated that the quality of stroke rehabilitation research has continued to improve over the last four decades but despite this progress, there are still many barriers in moving the field forward. Rigorous development, monitoring and complete reporting of interventions in stroke trials are essential in providing rehabilitation evidence that is robust, meaningful and implementable. An international partnership of stroke rehabilitation experts committed to develop consensus-based core recommendations with a remit of addressing the issues identified as limiting stroke rehabilitation research in the areas of developing, monitoring and reporting stroke rehabilitation interventions. Work exploring each of the three areas took place via multiple teleconferences and a two-day meeting in Philadelphia in May 2016. A total of 15 recommendations were made. To validate the need for the recommendations, the group reviewed all stroke rehabilitation trials published in 2015 (n=182 papers). Our review highlighted that the majority of publications did not clearly describe how interventions were developed or monitored during the trial. In particular, under-reporting of the theoretical rationale for the intervention and the components of the intervention call into question many interventions that have been evaluated for efficacy. More trials were found to have addressed the reporting of interventions recommendations than those related to development or monitoring. Nonetheless, the majority of reporting recommendations were still not adequately described. To progress the field of stroke rehabilitation research and to ensure stroke patients receive optimal evidence-based clinical care, we urge the research community to endorse and adopt our recommendations.

Introduction: The Rehabilitation Training (ReTrain) intervention aims to improve functional mobility, adherence to poststroke exercise guidelines and quality of life for people after stroke. A definitive randomised controlled trial (RCT) is required to assess the clinical and cost-effectiveness of ReTrain, which is based on Action for Rehabilitation from Neurological Injury (ARNI). The purpose of this pilot study is to assess the feasibility of such a definitive trial and inform its design., Methods and Analysis: A 2-group, assessor-blinded, randomised controlled external pilot trial with parallel mixed-methods process evaluation and economic evaluation. 48 participants discharged from clinical rehabilitation despite residual physical disability will be individually randomised 1:1 to ReTrain (25 sessions) or control (exercise advice booklet). Outcome assessment at baseline, 6 and 9 months include Rivermead Mobility Index; Timed Up and Go Test; modified Patient-Specific Functional Scale; 7-day accelerometry; Stroke Self-efficacy Questionnaire, exercise diary, Fatigue Assessment Scale, exercise beliefs and self-efficacy questionnaires, SF-12, EQ-5D-5L, Stroke Quality of Life, Carer Burden Index and Service Receipt Inventory. Feasibility, acceptability and process outcomes include recruitment and retention rates; with measurement burden and trial experiences being explored in qualitative interviews (20 participants, 3 intervention providers). Analyses include descriptive statistics, with 95% CI where appropriate; qualitative themes; intervention fidelity from videos and session checklists; rehearsal of health economic analysis., Ethics and Dissemination: National Health Service (NHS) National Research Ethics Service approval granted in April 2015; recruitment started in June. Preliminary studies suggested low risk of serious adverse events; however (minor) falls, transitory muscle soreness and high levels of postexercise fatigue are expected. Outputs include pilot data to inform whether to proceed to a definitive RCT and support a funding application; finalised Trainer and Intervention Delivery manuals for multicentre replication of ReTrain; presentations at conferences, public involvement events; internationally recognised peer-reviewed journal publications, open access sources and media releases., Trial Registration Number: NCT02429180; Pre-results., Competing Interests: Conflicts of Interest: None declared., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Purpose: Stroke survivors consistently report longer-term problems after stroke, suggesting their needs are not being met. We developed a questionnaire to identify stroke-survivor unmet needs. Preliminary questionnaire testing showed that despite residual impairment, nearly one third of respondents reported no/low unmet need. This qualitative study aims to gain insight into why stroke survivors report low/no unmet needs., Method: People who self-reported zero or one unmet need were purposively sampled and semi-structured interviews were conducted with 10 participants. Identification and management of current problems were discussed and thematic analysis was undertaken., Results: Participants did not report having unmet need. Despite this, all participants identified current issues or problems. Living with problems while reporting no/low unmet need is explained through: acceptance of changed circumstances; making comparisons with other people and circumstances; valuing pride, determination or independence; and viewing issues in the context of their expectations and experiences of services. Additionally, all participants were receiving some support., Conclusions: Self-identification of unmet needs is complex. Further investigation could explore the factors which enable stroke survivors to appropriately identify and experience no unmet needs, and whether these could be applied to reduce unmet needs of others. Implications for Rehabilitation Despite self-reporting no/low unmet need, survivors of stroke may still be experiencing difficulties in their daily lives. Stroke-survivor-identified low unmet need is influenced by complex factors including: acceptance; expectations of services; and comparisons with other people, which Health and Social Care professionals have a role in understanding. Health professionals could assess unmet need by using tools as a guide, supported by individual conversation. Factors which enable some stroke survivors to appropriately identify and experience no/low unmet need could be further explored, and considered as strategies to reduce unmet needs of others.

Introduction: We are undertaking a randomised controlled trial (fAmily led rehabiliTaTion aftEr stroke in INDia, ATTEND) evaluating training a family carer to enable maximal rehabilitation of patients with stroke-related disability; as a potentially affordable, culturally acceptable and effective intervention for use in India. A process evaluation is needed to understand how and why this complex intervention may be effective, and to capture important barriers and facilitators to its implementation. We describe the protocol for our process evaluation to encourage the development of in-process evaluation methodology and transparency in reporting., Methods and Analysis: The realist and RE-AIM (Reach, Effectiveness, Adoption, Implementation and Maintenance) frameworks informed the design. Mixed methods include semistructured interviews with health providers, patients and their carers, analysis of quantitative process data describing fidelity and dose of intervention, observations of trial set up and implementation, and the analysis of the cost data from the patients and their families perspective and programme budgets. These qualitative and quantitative data will be analysed iteratively prior to knowing the quantitative outcomes of the trial, and then triangulated with the results from the primary outcome evaluation., Ethics and Dissemination: The process evaluation has received ethical approval for all sites in India. In low-income and middle-income countries, the available human capital can form an approach to reducing the evidence practice gap, compared with the high cost alternatives available in established market economies. This process evaluation will provide insights into how such a programme can be implemented in practice and brought to scale. Through local stakeholder engagement and dissemination of findings globally we hope to build on patient-centred, cost-effective and sustainable models of stroke rehabilitation., Trial Registration Number: CTRI/2013/04/003557., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Objectives: To examine the economic evidence for interventions aimed at family carers of stroke patients., Data Sources: Searches (limited to those published in English since 1990) were performed in key databases along with hand searches of relevant papers., Review Methods: Papers were restricted to studies including any economic data (broadly defined) for any intervention targeting carers explicitly or explicitly referring to a carer element, beyond involving carers in the care or intervention for patients (i.e. more than just carers being invited to observe an intervention targeted at the patient). Two reviewers independently screened full papers and extracted data using guidance from the National Institute for Health and Care Excellence, and quality assessment using the Newcastle-Ottawa Quality Assessment Scale (cohort studies), the Delphi list (randomised controlled trials) and guidelines on economic quality from the British Medical Journal. Data were reviewed descriptively as meta analyses were inappropriate due to non-comparability of studies., Results: Ten papers were included in the review. These were heterogeneous in their design, intervention and economic analyses making comparison difficult. Only three of the ten papers included economic evaluations. All three reported that the intervention was less costly and had better or equivalent outcomes than the control comparator although two of these were based on the same intervention using the same dataset., Conclusion: There is some limited evidence that interventions for family carers of stroke patients are effective and cost effective. However, due to variation in the types of interventions examined, little can be concluded regarding implications for clinical practice., (© The Author(s) 2015.)

Background and Purpose: We developed a new postdischarge system of care comprising a structured assessment covering longer-term problems experienced by patients with stroke and their carers, linked to evidence-based treatment algorithms and reference guides (the longer-term stroke care system of care) to address the poor longer-term recovery experienced by many patients with stroke., Methods: A pragmatic, multicentre, cluster randomized controlled trial of this system of care. Eligible patients referred to community-based Stroke Care Coordinators were randomized to receive the new system of care or usual practice. The primary outcome was improved patient psychological well-being (General Health Questionnaire-12) at 6 months; secondary outcomes included functional outcomes for patients, carer outcomes, and cost-effectiveness. Follow-up was through self-completed postal questionnaires at 6 and 12 months., Results: Thirty-two stroke services were randomized (29 participated); 800 patients (399 control; 401 intervention) and 208 carers (100 control; 108 intervention) were recruited. In intention to treat analysis, the adjusted difference in patient General Health Questionnaire-12 mean scores at 6 months was -0.6 points (95% confidence interval, -1.8 to 0.7; P=0.394) indicating no evidence of statistically significant difference between the groups. Costs of Stroke Care Coordinator inputs, total health and social care costs, and quality-adjusted life year gains at 6 months, 12 months, and over the year were similar between the groups., Conclusions: This robust trial demonstrated no benefit in clinical or cost-effectiveness outcomes associated with the new system of care compared with usual Stroke Care Coordinator practice., Clinical Trial Registration: URL: http://www.controlled-trials.com. Unique identifier: ISRCTN 67932305., (© 2015 Bradford Teaching Hospitals NHS Foundation Trust.)

Rationale: Despite recognition of the importance of the longer-term consequences of stroke, services addressing these needs remain poorly developed. There are persuasive arguments that a community-based orientation to poststroke care, to assess, support, and coordinate relevant services, might be more helpful in minimizing longer-term stroke morbidity. To address this, an evidence-based system of care has been developed that aims to meet the longer-term needs for stroke survivors and their carers living at home in the community., Aims: The study aims to evaluate the clinical and cost-effectiveness of a purposely developed system of care for stroke patients and their carers living in the community., Design: This is a cluster randomized, controlled trial. The trial aimed to recruit 800 patients (and their carers, if appropriate) in 32 stroke services across the United Kingdom. The system of care is delivered by health professionals undertaking a community-based liaison or coordinating role for stroke patients (termed 'stroke care coordinators'). Stroke care coordinators in stroke services randomized to the intervention group were trained to deliver the system of care, while those randomised to the control group continued to deliver current practice., Study Outcomes: The primary outcome is patient emotional health measured using the General Health Questionnaire 12 at six-months after recruitment. Secondary outcomes include cost-effectiveness, patient functional health and carer emotional health, with final follow-up at 12 months., Current Status: Thirty-two stroke services were randomized and 800 patients and 208 carers were recruited from 29 services. Follow-up is ongoing, and trial results are expected in early 2013., (© 2013 Bradford Teaching Hospitals NHS Foundation Trust. International Journal of Stroke © 2013 World Stroke Organization.)

Background: To inform the design of a randomised controlled trial (RCT) of an exercise-based programme for long term stroke survivors, we conducted a mixed methods before-and-after case series with assessment at three time points. We evaluated Action for Rehabilitation from Neurological Injury (ARNI), a personalised, functionally-focussed programme. It was delivered through 24 hours of one-to-one training by an Exercise Professional (EP), plus at least 2 hours weekly unsupervised exercise, over 12- 14 weeks. Assessment was by patient-rated questionnaires addressing function, physical activity, confidence, fatigue and health-related quality of life; objective assessment of gait quality and speed; qualitative individual interviews conducted with participants. Data were collected at baseline, 3 months and 6 months. Fidelity and acceptability was assessed by participant interviews, audit of participant and EP records, and observation of training., Findings: Four of six enrolled participants completed the exercise programme. Quantitative data demonstrated little change across the sample, but marked changes on some measures for some individuals. Qualitative interviews suggested that small benefits in physical outcomes could be of great psychological significance to participants. Participant-reported fatigue levels commonly increased, and non-completers said they found the programme too demanding. Most key components of the intervention were delivered, but there were several potentially important departures from intervention fidelity., Discussion: The study provided data and experience that are helping to inform the design of an RCT of this intervention. It suggested the need for a broader recruitment strategy; indicated areas that could be explored in more depth in the qualitative component of the trial; and highlighted issues that should be addressed to enhance and evaluate fidelity, particularly in the preparation and monitoring of intervention providers. The experience illustrates the value of even small sample before-and-after studies in the development of trials of complex interventions.

Background: Research shows that stroke patients and their families are dissatisfied with the information provided and have a poor understanding of stroke and associated issues., Objectives: To assess the effectiveness of information provision strategies in improving the outcome for stroke patients or their identified caregivers, or both., Search Methods: For this update we searched the Cochrane Stroke Group Trials Register (June 2012), the Cochrane Central Register of Controlled trials (CENTRAL), the Cochrane Database of Systematic Reviews (CDSR), the Database of Abstracts of Reviews of Effects (DARE), the NHS Economic Evaluation Database (EED), and the Health Technology Assessment (HTA) Database (The Cochrane Library June, 2012), MEDLINE (1966 to June 2012), EMBASE (1980 to June 2012), CINAHL (1982 to June 2012) and PsycINFO (1974 to June 2012). We also searched ongoing trials registers, scanned bibliographies of relevant articles and books and contacted researchers., Selection Criteria: Randomised trials involving patients or carers of patients with a clinical diagnosis of stroke or transient ischaemic attack (TIA) where an information intervention was compared with standard care, or where information and another therapy were compared with the other therapy alone., Data Collection and Analysis: Two review authors independently assessed trial eligibility and methodological quality and extracted data. Primary outcomes were knowledge about stroke and stroke services, and impact on mood., Main Results: We have added four new trials to this update. This review now includes 21 trials involving 2289 patient and 1290 carer participants. Nine trials evaluated a passive and 12 trials an active information intervention. Meta-analyses showed a significant effect in favour of the intervention on patient knowledge (standardised mean difference (SMD) 0.29, 95% confidence interval (CI) 0.12 to 0.46, P < 0.001), carer knowledge (SMD 0.74, 95% CI 0.06 to 1.43, P = 0.03), one aspect of patient satisfaction (odds ratio (OR) 2.07, 95% CI 1.33 to 3.23, P = 0.001), and patient depression scores (mean difference (MD) -0.52, 95% CI -0.93 to -0.10, P = 0.01). There was no significant effect (P > 0.05) on number of cases of anxiety or depression in patients, carer mood or satisfaction, or death. Qualitative analyses found no strong evidence of an effect on other outcomes. Post-hoc subgroup analyses showed that active information had a significantly greater effect than passive information on patient mood but not on other outcomes., Authors' Conclusions: There is evidence that information improves patient and carer knowledge of stroke, aspects of patient satisfaction, and reduces patient depression scores. However, the reduction in depression scores was small and may not be clinically significant. Although the best way to provide information is still unclear there is some evidence that strategies that actively involve patients and carers and include planned follow-up for clarification and reinforcement have a greater effect on patient mood.

Background: national policy recommends routine re-assessment of disabled patients and their carers at 6 months after stroke onset. The clinical and resource outcomes of this policy were investigated., Design: prospective, single-blind, randomised controlled trial in two centres., Participants: a total of 265 patients with a disabling stroke and their carers., Interventions: a structured re-assessment system for patients and their carers at 6 months post-stroke or existing care., Outcome Measures: primary: patient independence (Frenchay activities index) and carer stress (general health questionnaire 28). Secondary: activities of daily living, mood state, satisfaction with services, carer strain index, health and social service resource use and costs., Results: independence at 12 months post-stroke was similar in both groups (Frenchay activities index, adjusted mean difference 0.64; 95% confidence interval -0.74-2.02). Emotional distress in carers was similar in both groups (general health questionnaire 28, mean difference 0.02; 95% confidence interval -0.95-1.00). Results for the secondary outcome measures and total mean costs were similar for both groups. The intervention group patients used 301 fewer hospital bed days and 1,631 fewer care home bed days., Conclusions: the structured, systematic re-assessment for patients and their carers was not associated with any clinically significant evidence of benefit at 12 months. Health and social care resource use and mean cost per patient were broadly similar in both groups., Trial Registration: International Standard Randomised Controlled Trial Register; number: ISRCTN55412871.

The National Service Framework for older people recommends that patients recovering from a stroke should have access to a stroke care coordinator (SCC) to support their longer-term recovery. However, the knowledge base, skills and procedures for the role are poorly defined. We have therefore conducted a survey to examine the development and responsibilities of SCCs with a remit for longer-term support. We identified 39 SCCs, most of whom were nurses. Three role types were observed: enhanced community follow-up (n=22); hybrid (n=15); and hospital outpatient (n=2). However, there was overlap between the roles reflecting a wide variation in practice in respect of timing and frequency of patient contacts, and methods for assessing patients' needs. Workload and knowledge of the evidence-base were identified as the main challenges to delivering care. Meeting patients' needs was impeded by limited access to psychology and physical therapies. A more robust evidence-base to support longer-term stroke care, combined with routine clinical governance systems for monitoring care provision could enhance the development of the SCC role.

Background: A new primary care model for stroke aftercare has been developed to address the longer-term needs of patients who have had a stroke and their families., Aim: To test the feasibility and acceptability of the new model on patients who have had a stroke and their carers., Design of Study: An observational feasibility study., Setting: Patient and carer assessments and interviews conducted in patients' homes., Method: Patients who have had a stroke, and their carers, were assessed using a purposely developed primary care stroke model. Qualified health- and social-care professionals acted as stroke care coordinators and carried out the assessments. Four evaluations were undertaken as part of the study: analysis of care plans, a survey of unmet needs, focus group sessions for staff, and patient/carer interviews., Results: Forty-seven patients and 21 carers were recruited to the study. Analysis of care plans indicated that the assessment process was successful in identifying patient and carer problems (n = 219). Actions were instigated against 190 of these problems and, at 3 months after the assessment, 75% of the problems had been resolved. Patients/carers thought that the review process would be more valuable if conducted sooner after hospital discharge., Conclusion: The model was acceptable to professionals, encouraging them to work in a manner more consistent with the expressed needs of patients and carers who were adjusting to the longer-term impact of stroke. Essential aspects informing the care process were also identified. Further work is now required to investigate the effects of the intervention on patient and carer outcomes.

Background: Standing is believed to have benefits in addressing motor and sensory impairments after stroke. One device to facilitate standing for severely disabled patients is the Oswestry Standing Frame., Objective: To evaluate the effectiveness of the Oswestry Standing Frame for severely disabled stroke patients., Design: A single centre, randomized controlled trial., Setting: An inpatient stroke rehabilitation unit., Subjects: Patients were recruited if they had a clinical diagnosis of stroke, were medically stable and unable to achieve any score on the Trunk Control Test or unable to stand in mid-line without the assistance of two therapists., Intervention: The intervention (n = 71) and control (n = 69) groups both received usual stroke unit care but the intervention group also received a minimum of 14 consecutive days' treatment using the standing frame., Main Outcome Measures: The primary outcome measure was the Rivermead Mobility Index (RMI). Secondary measures included the Barthel Index; the Rivermead Motor Assessment; the balanced sitting and sitting to standing components of the Motor Assessment Scale; the Trunk Control Test and the Hospital Anxiety and Depression Scale. Blind assessment was undertaken at baseline, six weeks, 12 weeks and six months post stroke. Information on resource use was also collected., Results: There was no statistically significant difference between groups in any of the outcome measures or for resource use. Mann-Whitney U-tests for the RMI change from baseline scores to six weeks, 12 weeks and six months post stroke were p = 0.310; p = 0.970 and p = 0.282, respectively., Conclusion: Use of the Oswestry Standing Frame did not improve clinical outcome or provide resource savings for this severely disabled patient group.

The long-term needs of people who have had a stroke and their carers are not being adequately addressed. A stroke care coordinator based in primary care might improve service delivery: the district nurse has been suggested as a possible candidate. A postal survey was conducted with three primary care trusts in Bradford to investigate the current role of the district nurse in stroke care and to examine their potential as stroke care coordinator. District nurses from 24 (59%) teams responded to the survey. Twenty-two (44%) were aware of the national clinical guidelines for stroke and five (10%) had received stroke-related training within the previous year. The district nurses demonstrated insight into the types of longer term problems experienced by people who have had a stroke and their carers. While findings of the survey suggests that they would be a likely candidate for the stroke care coordinator role, there are major educational, training and organizational challenges to implementing this change.

Background: Self-management approaches are increasingly recommended after stroke with the aim of supporting longer-term adaptation, adjustment and condition management. Stroke survivors with aphasia (SSWA) have particularly poor longer-term outcomes; however, the suitability of self-management for SSWA is unclear. Speech and language therapists (SLTs) play a key role in the provision of care for this group of stroke survivors; however, UK SLTs views of self-management have not been explored. Aims: To explore UK SLTs views of "self-management" as an approach in stroke rehabilitation including its application in practice with SSWA. Methods & Procedures: In depth, semi-structured qualitative interviews were conducted with SLTs from five NHS speech and language therapy services. Interview data were analysed using thematic analysis. Outcomes & Results: Eighteen SLTs participated in interviews. Many SLTs were not familiar with the term "self-management". However, SLTs were positive about the connotations of this term which aligned closely with the values they held about their role and the desired outcomes of rehabilitation. SLTs described multiple aspects of their existing practice which they associated with enabling "self-management" (e.g., self-directed practice of therapy tasks, encouraging SSWA to take responsibility for their own rehabilitation, involving family members in therapy). However, some SLTs identified difficulties involving SSWA as active participants in the rehabilitation process and in facilitating "readiness" to take responsibility for managing in the longer-term. Other barriers to enabling self-management were identified including limited session time for speech and language therapy in the community setting, difficulties involving family members in rehabilitation and a lack of access to other services to support self-management (including specialist psychological support). Conclusions: Making the transition to longer-term adaptation, adjustment and condition management is a complex and challenging task which is likely to require tailored support for many SSWA and their families. Supported self-management may help to facilitate this process; however, SLTs require a structured and clearly defined approach and training to assist implementation in practice. Organisational "buy-in" and support for self-management as a therapeutic approach within speech and language rehabilitation will also be required for successful implementation. [ABSTRACT FROM AUTHOR]

Background Training family carers to provide evidence-based rehabilitation to stroke patients could address the recognized deficiency of access to stroke rehabilitation in low-resource settings. However, our randomized controlled trial in India (ATTEND) found that this model of care was not superior to usual care alone. Aims This process evaluation aimed to better understand trial outcomes through assessing trial implementation and exploring patients', carers', and providers' perspectives. Methods Our mixed methods study included process, healthcare use data and patient demographics from all sites; observations and semi-structured interviews with participants (22 patients, 22 carers, and 28 health providers) from six sampled sites. Results Intervention fidelity and adherence to the trial protocol was high across the 14 sites; however, early supported discharge (an intervention component) was not implemented. Within both randomized groups, some form of rehabilitation was widely accessed. ATTEND stroke coordinators provided counseling and perceived that sustaining patients' motivation to continue with rehabilitation in the face of significant emotional and financial stress as a key challenge. The intervention was perceived as an acceptable community-based package with education as an important component in raising the poor awareness of stroke. Many participants viewed family-led rehabilitation as a necessary model of care for poor and rural populations who could not access rehabilitation. Conclusion Difficulty in sustaining patient and carer motivation for rehabilitation without ongoing support, and greater than anticipated access to routine rehabilitation may explain the lack of benefit in the trial. Nonetheless, family-led rehabilitation was seen as a concept worthy of further development. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Recent reviews have demonstrated that the quality of stroke rehabilitation research has continued to improve over the last four decades but despite this progress, there are still many barriers in moving the field forward. Rigorous development, monitoring and complete reporting of interventions in stroke trials are essential in providing rehabilitation evidence that is robust, meaningful and implementable. An international partnership of stroke rehabilitation experts committed to develop consensus-based core recommendations with a remit of addressing the issues identified as limiting stroke rehabilitation research in the areas of developing, monitoring and reporting stroke rehabilitation interventions. Work exploring each of the three areas took place via multiple teleconferences and a two-day meeting in Philadelphia in May 2016. A total of 15 recommendations were made. To validate the need for the recommendations, the group reviewed all stroke rehabilitation trials published in 2015 (n=182 papers). Our review highlighted that the majority of publications did not clearly describe how interventions were developed or monitored during the trial. In particular, under-reporting of the theoretical rationale for the intervention and the components of the intervention call into question many interventions that have been evaluated for efficacy. More trials were found to have addressed the reporting of interventions recommendations than those related to development or monitoring. Nonetheless, the majority of reporting recommendations were still not adequately described. To progress the field of stroke rehabilitation research and to ensure stroke patients receive optimal evidence-based clinical care, we urge the research community to endorse and adopt our recommendations. [ABSTRACT FROM AUTHOR]

Background The aim of this pilot study was to determine the feasibility of a multicenter, randomized, controlled trial in India of a family-led, trained caregiver-delivered, home-based rehabilitation intervention vs. routine care. Methods A prospective, randomized (within seven-days of hospital admission), blinded outcome assessor, controlled trial of structured home-based rehabilitation delivered by trained and protocol-guided family caregivers (intervention) vs. routine care alone (control) was conducted in patients with residual disability. Key feasibility measures were recruitment, acceptance and adherence to assessment procedures, and follow-up of participants over six-months. CTRI/2014/10/005133. Results A total of 104 patients from the stroke unit at Christian Medical College, Ludhiana were recruited over nine-months. Recruitment was feasible and accepted by patients and their carers. Important observations were made regarding potential unblinding of the participants, contamination of therapy between the randomized groups, organization of home visits, and resources required for a multicenter study. Conclusion The pilot study established the feasibility of conducting a large-scale study of family-led, trained caregiver-delivered, home-based stroke rehabilitation in a low resource setting. The main phase of the trial ' ATTEND' is currently underway in over 10 centers in India. [ABSTRACT FROM AUTHOR]

Background: Development of longer term stroke rehabilitation services is limited by lack of evidence of effectiveness for specific interventions and service models. We describe the protocol for a multicentre randomised controlled trial which is evaluating an extended stroke rehabilitation service. The extended service commences when routine 'organised stroke care' (stroke unit and early supported discharge (ESD)) ends. Methods/design: This study is a multicentre randomised controlled trial with health economic and process evaluations. It is set within NHS stroke services which provide ESD. Participants are adults who have experienced a new stroke (and carer if appropriate), discharged from hospital under the care of an ESD team. The intervention group receives an extended stroke rehabilitation service provided for 18 months following completion of ESD. The extended rehabilitation service involves regular contact with a senior ESD team member who leads and coordinates further rehabilitation. Contact is usually by telephone. The control group receives usual stroke care post-ESD. Usual care may involve referral of patients to a range of rehabilitation services upon completion of ESD in accordance with local clinical practice. Randomisation is via a central independent web-based service. The primary outcome is extended activities of daily living (Nottingham Extended Activities of Daily Living Scale) at 24 months post-randomisation. Secondary outcomes (at 12 and 24 months post-randomisation) are health status, quality of life, mood and experience of services for patients, and quality of life, experience of services and carer stress for carers. Resource use and adverse events are also collected. Outcomes are undertaken by a blinded assessor. Implementation and delivery of the extended stroke rehabilitation service will also be described. Semi-structured interviews will be conducted with a subsample of participants and staff to gain insight into perceptions and experiences of rehabilitation services delivered or received. Allowing for 25% attrition, 510 participants are needed to provide 90% power to detect a difference in mean Nottingham Extended Activities of Daily Living Scale score of 6 with a 5% significance level. Discussion: The provision of longer term support for stroke survivors is currently limited. The results from this trial will inform future stroke service planning and configuration. Trial registration: This trial was registered with ISRCTN (identifier: ISRCTN45203373) on 9 August 2012. [ABSTRACT FROM AUTHOR]

The article presents a study which examines the delivery and content of the adapted London Stroke Carers Training Course intervention analyzed during the Training Caregivers after Stroke (TRACS) trial. The study involved a cascade method of implementation for the training course intervention. Results show that the structured programme was delivered in standardised and structured way in several stroke unit variations in Great Britain.

The article presents information an analysis of a structured training programme for caregivers of inpatients after stroke (TRACS). It states that one third of the stroke survivors become disabled for rest of their lives. A training programme titled the London Stroke Carers Training Course for caregivers of such patients is being discussed in the article.

Background: Multiple guidelines are often available to inform practice in complex interventions. Guidance implementation may be facilitated if it is tailored to particular clinical issues and contexts. It should also aim to specify all elements of interventions that may mediate and modify effectiveness, including both their content and delivery. We conducted a focused synthesis of recommendations from stroke practice guidelines to produce a structured and comprehensive account to facilitate the development of community-based exercise programmes after stroke. Methods: Published stroke clinical practice guidelines were searched for recommendations relevant to the content and delivery of community-based exercise interventions after stroke. These were synthesised using a framework based on target intervention outcomes, personal and programme proximal objectives, and recommended strategies. Results: Nineteen guidelines were included in the synthesis (STRIDES; STroke Rehabilitation Intervention- Development Evidence Synthesis). Eight target outcomes, 14 proximal objectives, and 94 recommended strategies were identified. The synthesis was structured to present best practice recommendations in a format that could be used by intervention programme developers. It addresses both programme content and context, including personal factors, service standards and delivery issues. Some recommendations relating to content, and many relating to delivery and other contextual issues, were based on low level evidence or expert opinion. Where opinion varied, the synthesis indicates the range of best practice options suggested in guidelines. Conclusions: The synthesis may assist implementation of best practice by providing a structured intervention description that focuses on a particular clinical application, addresses practical issues involved in programme development and provision, and illustrates the range of best-practice options available to users where robust evidence is lacking. The synthesis approach could be applied to other areas of stroke rehabilitation or to other complex interventions. [ABSTRACT FROM AUTHOR]

Background: Medical Research Council (MRC) guidance identifies implementation as a key element of the development and evaluation process for complex healthcare interventions. Implementation is itself a complex process involving the mobilization of human, material, and organizational resources to change practice within settings that have pre-existing structures, historical patterns of relationships, and routinized ways of working. Process evaluations enable researchers and clinicians to understand how implementation proceeds and what factors impact on intended program change. A qualitative process evaluation of the pragmatic cluster randomized controlled trial; Training Caregivers after Stroke was conducted to examine how professionals were engaged in the work of delivering training; how they reached and involved caregivers for whom the intervention was most appropriate; how did those on whom training was targeted experience and respond to it. Normalization Process Theory, which focuses attention on implementing and embedding program change, was used as a sensitizing framework to examine selected findings. Results: Contextual factors including organizational history and team relationships, external policy, and service development initiatives, impinged on implementation of the caregiver training program in unintended ways that could not have been predicted through focus on mechanisms of individual and collective action at unit level. Factors that facilitated or impeded the effectiveness of the cascade training model used, whether and how stroke unit teams made sense of and engaged individually and collectively with a complex caregiver training intervention, and what impact these factors had on embedding the intervention in routine stroke unit practice were identified. Conclusions: Where implementation of complex interventions depends on multiple providers, time needs to be invested in reaching agreement on who will take responsibility for delivery of specific components and in determining how implementation and its effectiveness will be monitored. This goes beyond concern with intervention fidelity; explicit consideration also needs to be given to the implementation process in terms of how program change can be effected at organizational, practice, and service delivery levels. Normalization Process Theory's constructs help identify vulnerable features of implementation processes in respect of the work involved in embedding complex interventions. [ABSTRACT FROM AUTHOR]

The article discusses a study conducted to identify any externally validated prognostic model for predicting outcome in unselected populations following acute stroke comprising variables feasible for collection in routine care. The results revealed that that the Six Simple Variables model shows statistical strength, good discriminatory function in external validation studies. Alternative modelling approaches for case-mix adjustment are also discussed.

There are many randomized controlled trials relating to stroke rehabilitation being carried out in China, which are often published in Chinese-language journals. A recent update to our Cochrane systematic review of physical rehabilitation to improve function and mobility after stroke included 96 trials; over half (51) were conducted in China; 37 of these included studies were published in Chinese. Analyses within this Cochrane review support the conclusion that physical rehabilitation, using a mix of components from different approaches, is effective for the recovery of function and mobility after stroke. The inclusion of the Chinese studies had a substantial impact on the volume of evidence and, consequently, the conclusions. In this paper, we explore whether it is appropriate to draw implications for clinical practice throughout the world from evidence relating to a complex rehabilitation intervention delivered within one particular geographical healthcare setting. We explore the unique challenges associated with incorporating the body of evidence from China, particularly the Chinese-language publications, and identify the ongoing debate about the quality of Chinese research publications. We conclude that the growing body of evidence from China has important implications for future systematic reviews and evidence-based stroke care, but analysis and interpretation raise challenges, and improved reporting is critical. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

• A network-based model may be able to describe apathy in cerebrovascular disease. • Focal network damage, such as in stroke, could lead to network failure and apathy. • Changes to remote regions or network disconnection can lead to apathy over time. • Specific subnetworks may underlie motivation-related cognitive functioning. • Understanding the network basis of apathy could lead to targeted treatments. Apathy is a reduction in motivated goal-directed behavior (GDB) that is prevalent in cerebrovascular disease, providing an important opportunity to study the mechanistic underpinnings of motivation in humans. Focal lesions, such as those seen in stroke, have been crucial in developing models of brain regions underlying motivated behavior, while studies of cerebral small vessel disease (SVD) have helped define the connections between brain regions supporting such behavior. However, current lesion-based models cannot fully explain the neurobiology of apathy in stroke and SVD. To address this, we propose a network-based model which conceptualizes apathy as the result of damage to GDB-related networks. A review of the current evidence suggests that cerebrovascular disease-related pathology can lead to network changes outside of initially damaged territories, which may propagate to regions that share structural or functional connections. The presentation and longitudinal trajectory of apathy in stroke and SVD may be the result of these network changes. Distinct subnetworks might support cognitive components of GDB, the disruption of which results in specific symptoms of apathy. This network-based model of apathy may open new approaches for investigating its underlying neurobiology, and presents novel opportunities for its diagnosis and treatment. [ABSTRACT FROM AUTHOR]