Qualitative focus group study investigating experiences of accessing and engaging with social care services: perspectives of carers from diverse ethnic groups caring for stroke survivors

OBJECTIVES: Informal carers, often family members, play a vital role in supporting stroke survivors with post-stroke disability. As populations age, numbers of carers overall and those from minority ethnic groups in particular, are rising. Carers from all ethnic groups, but especially those from black and minority ethnic groups frequently fail to access support services, making understanding their experiences important. The study therefore explored the experiences of carers of stroke survivors aged 45+ years from 5 ethnic groups in accessing and receiving social care services after hospital discharge. DESIGN: This qualitative study used 7 recorded focus groups with informal carers of stroke survivors. Data were analysed thematically focusing on similarities and differences between ethnic groups. SETTING: Carers were recruited from voluntary sector organisations supporting carers, stroke survivors and black and minority ethnic groups in the UK. PARTICIPANTS: 41 carers from 5 ethnic groups (Asian Indian, Asian Pakistani, black African, black Caribbean, white British) participated in the focus groups. RESULTS: Several interconnected themes were identified including: the service gap between hospital discharge and home; carers as the best person to care and cultural aspects of caring and using services. Many themes were common to all the included ethnic groups but some related to specific groups. CONCLUSIONS: Across ethnic groups there were many similarities in the experiences of people caring for stroke survivors with complex, long-term care needs. Accessing services demands effort and persistence on carers' part. If carers believe services are unsatisfactory or that they, rather than formal services, should be providing support for stroke survivors, they are unlikely to persist in their efforts. Cultural and language differences add to the challenges black and minority ethnic group carers face

Using co-production to increase activity in acute stroke units : the CREATE mixed-methods study

Background: Stroke is the most common neurological disability in the UK. Any activity contributes to recovery, but stroke patients can be inactive for > 60% of their waking hours. This problem remains, despite organisational changes and targeted interventions. A new approach to addressing post-stroke inactivity is needed. Experience-based co-design has successfully initiated improvements for patients and staff in other acute settings. Experience-based co-design uses observational fieldwork and filmed narratives with patients to trigger different conversations and interactions between patients and staff to improve health-care services. Objectives: To complete a rapid evidence synthesis of the efficacy and effectiveness of co-production as an approach to quality improvement in acute health-care settings; to evaluate the feasibility and impact of patients, carers and staff co-producing and implementing interventions to increase supervised and independent therapeutic patient activity in acute stroke units; and to understand the experience of participating in experience-based co-design and whether or not interventions developed and implemented in two units could transfer to two additional units using an accelerated experience-based co-design cycle. Design: A mixed-methods case comparison using interviews, observations, behavioural mapping and self-report surveys (patient-reported outcome measure/patient-reported experience measure) pre and post implementation of experience-based co-design cycles, and a process evaluation informed by normalisation process theory. Setting: The setting was two stroke units (acute and rehabilitation) in London and two in Yorkshire. Participants: In total, 130 staff, 76 stroke patients and 47 carers took part. Findings: The rapid evidence synthesis showed a lack of rigorous evaluation of co-produced interventions in acute health care, and the need for a robust critique of co-production approaches. Interviews and observations (365 hours) identified that it was feasible to co-produce and implement interventions to increase activity in priority areas including ‘space’ (environment), ‘activity’ and, to a lesser extent, ‘communication’. Patients and families reported benefits from participating in co-design and perceived that they were equal and valued members. Staff perceived that experience-based co-design provided a positive experience, was a valuable improvement approach and led to increased activity opportunities. Observations and interviews confirmed the use of new social spaces and increased activity opportunities. However, staff interactions remained largely task focused, with limited focus on enabling patient activity. Behavioural mapping indicated a mixed pattern of activity pre and post implementation of co-designed changes. Patient-reported outcome measure/patient-reported experience measure response rates were low, at 12–38%; pre- and post-experience-based co-design cohorts reported dependency, emotional and social limitations consistent with national statistics. Post-experience-based co-design patient-reported experience measure data indicated that more respondents reported that they had ‘enough things to do in their free time’. The use of experience-based co-design – full and accelerated – legitimised and supported co-production activity. Staff, patients and families played a pivotal role in intervention co-design. All participants recognised that increased activity should be embedded in everyday routines and in work on stroke units. Limitations: Communication by staff that enabled patient activity was challenging to initiate and sustain. Conclusions: It was feasible to implement experience-based co-design in stroke units. This resulted in some positive changes in unit environments and increased activity opportunities for patients. There was no discernible difference in experiences or outcomes between full and accelerated experience-based co-design. Future work should consider multiple ways to embed increased patient activity into everyday routines in stroke units

A tailored occupational therapist-led vocational intervention for people with stroke: Protocol for a pilot randomized controlled trial

Background: Resuming work after stroke is a common goal of working-age adults, yet there are few vocational rehabilitation programs designed to address the unique challenges faced following stroke. The Work intervention was developed to address these gaps. Objective: This paper presents a protocol that outlines the steps that will be undertaken to pilot both the intervention and trial processes for the Work trial. Methods: The Work trial is a 2-arm, prospective, randomized, blinded-assessor study with intention-to-treat analysis. A total of 54 adults of working age who have experienced a stroke \u3c4 months prior will be randomized 1:1 to either (1) an experimental group who will receive a 12-week early vocational intervention (Work intervention) plus usual clinical rehabilitation or (2) a control group who will receive only their usual clinical rehabilitation. Results: Outcomes include study and intervention feasibility and intervention benefit. In addition to evaluating the feasibility of delivering vocational intervention early after stroke, benefit will be assessed by measuring rates of vocational participation and quality-of-life improvements at the 3- and 6-month follow-ups. Process evaluation using data collected during the study, as well as postintervention individual interviews with participants and surveys with trial therapists, will complement quantitative data. Conclusions: The results of the trial will provide details on the feasibility of delivering the Work intervention embedded within the clinical rehabilitation context and inform future trial processes. Pilot data will enable a future definitive trial to determine the clinical effectiveness of vocational rehabilitation when delivered in the early subacute phase of stroke recovery

HYDROCARBONS OF BIOLOGICAL ORIGIN FROM A ONE-BILLION YEAR OLDSEDIMENT

The isoprenoid hydrocarbons, phytane (C{sub 20}H{sub 42}) and pristane (C{sub 19}H{sub 40}) are present in the oil seeping from the Pre-Cambrian Nonesuch Formation at the White Pine Mine, Michigan. Gas-liquid chromatography and mass spectrometry provide the isolation and identification procedures

Addressing inactivity after stroke : the Collaborative Rehabilitation in Acute Stroke (CREATE) study

Background: Stroke patients are often inactive outside of structured therapy sessions – an enduring international challenge despite large scale organizational changes, national guidelines and performance targets. We examined whether experienced-based co-design (EBCD) – an improvement methodology – could address inactivity in stroke units. Aims: To evaluate the feasibility and impact of patients, carers, and staff co-designing and implementing improvements to increase supervised and independent therapeutic patient activity in stroke units and to compare use of full and accelerated EBCD cycles. Methods: Mixed-methods case comparison in four stroke units in England. Results: Interviews were held with 156 patients, staff, and carers in total; ethnographic observations for 364 hours, behavioral mapping of 68 patients, and self-report surveys from 179 patients, pre- and post-implementation of EBCD improvement cycles. Three priority areas emerged: (1) ‘Space’ (environment); (2) ‘Activity opportunities’ and (3) ‘Communication’. More than 40 improvements were co-designed and implemented to address these priorities across participating units. Post-implementation interview and ethnographic observational data confirmed use of new social spaces and increased activity opportunities. However, staff interactions remained largely task-driven with limited focus on enabling patient activity. Behavioral mapping indicated some increases in social, cognitive, and physical activity post-implementation, but was variable across sites. Survey responses rates were low at 12–38% and inconclusive. Conclusion: It was feasible to implement EBCD in stroke units. This resulted in multiple improvements in stroke unit environments and increased activity opportunities but minimal change in recorded activity levels. There was no discernible difference in experience or outcome between full and accelerated EBCD; this methodology could be used across hospital stroke units to assist staff and other stakeholders to co-design and implement improvement plans

Co-designing organisational improvements and interventions to increase inpatient activity in four stroke units in England : a mixed-methods process evaluation using normalisation process theory

Objective: To explore facilitators and barriers to using Experience-based Co-design (EBCD) and accelerated EBCD (AEBCD) in the development and implementation of interventions to increase activity opportunities for inpatient stroke survivors. Design: Mixed-methods process evaluation underpinned by normalisation process theory (NPT). Setting: Four post-acute rehabilitation stroke units in England. Participants: Stroke survivors, family members, stroke unit staff, hospital managers, support staff and volunteers. Data informing our NPT analysis comprised: ethnographic observations, n= 366 hours; semi-structured interviews with 76 staff, 53 stroke survivors and 27 family members pre or post EBCD/AEBCD implementation; and observation of 43 co-design meetings involving 23 stroke survivors, 21 family carers and 54 staff Results: Former patients and families valued participation in EBCD/AEBCD perceiving they were equal partners in co-design. Staff engaged with EBCD/AEBCD, reporting it as valuable improvement approach leading to increased activity opportunities. The structured EBCD/AEBCD approach was influential in terms of progressing coherence and cognitive participation and legitimated staff involvement in the process. Researcher facilitation of EBCD/AEBCD supported cognitive participation collective action and reflexive monitoring which was important in implementing and sustaining co-design activities. Observations and interviews post EBCD/AEBCD cycles confirmed creation and use of new social spaces and increased activity opportunities in all units. Changes occurred without increased staffing or organisational resource allocation. EBCD/AEBCD facilitated engagement with wider hospital resources and local communities increasing and enhancing activity opportunities. However, outside of structured group activity many individual staff-patient interactions remained task-focused with limited focus on enabling patient activity. Conclusions: Using EBCD and AEBCD facilitated the development and implementation of environmental changes and revisions to work routines which supported increased activity opportunities in stroke units providing post-acute and rehabilitation care. Former stroke patients and carers contributed to improvements. Normalisation process theory’s generative mechanisms were instrumental in analysis and interpretation of facilitators and barriers at the individual, group and organisational levels

Exploring liminality in the co-design of rehabilitation environments: The case of one acute stroke unit

This paper describes an Experience-based Co-design (EBCD) project that aimed to increase patient activity within an acute stroke unit. We apply the concept of liminality to explore ways in which the EBCD process, a form of Participatory Action Research, may challenge social hierarchies and assumptions about practices and constraints in this care setting, thereby opening up possibilities for improving the therapeutic value of the space for patients. Through the creation of an 'anti-structure' within a medicalised and bureaucratised clinical setting, EBCD enhanced a sense of community and trust between staff and patients, generating both therapeutic and social value

Tranexamic acid for intracerebral haemorrhage within 2 hours of onset : protocol of a phase II randomised placebo-controlled double-blind multicentre trial

Rationale Haematoma growth is common early after intracerebral haemorrhage (ICH), and is a key determinant of outcome. Tranexamic acid, a widely available antifibrinolytic agent with an excellent safety profile, may reduce haematoma growth. Methods and design Stopping intracerebral haemorrhage with tranexamic acid for hyperacute onset presentation including mobile stroke units (STOP-MSU) is a phase II double-blind, randomised, placebo-controlled, multicentre, international investigator-led clinical trial, conducted within the estimand statistical framework. Hypothesis In patients with spontaneous ICH, treatment with tranexamic acid within 2 hours of onset will reduce haematoma expansion compared with placebo. Sample size estimates A sample size of 180 patients (90 in each arm) would be required to detect an absolute difference in the primary outcome of 20% (placebo 39% vs treatment 19%) under a two-tailed significance level of 0.05. An adaptive sample size re-estimation based on the outcomes of 144 patients will allow a possible increase to a prespecified maximum of 326 patients. Intervention Participants will receive 1 g intravenous tranexamic acid over 10 min, followed by 1 g intravenous tranexamic acid over 8 hours; or matching placebo. Primary efficacy measure The primary efficacy measure is the proportion of patients with haematoma growth by 24 +/- 6 hours, defined as either >= 33% relative increase or >= 6 mL absolute increase in haematoma volume between baseline and follow-up CT scan. Discussion We describe the rationale and protocol of STOP-MSU, a phase II trial of tranexamic acid in patients with ICH within 2 hours from onset, based in participating mobile stroke units and emergency departments.Peer reviewe

Glucose modifies the effect of endovascular thrombectomy in patients with acute stroke: a pooled-data meta-analysis

Background and Purpose: Hyperglycemia is a negative prognostic factor following acute ischemic stroke but is not known whether glucose is associated with the effects of endovascular thrombectomy in patients with large vessel stroke. In a pooled-data meta-analysis, we analyzed whether serum glucose is a treatment modifier of the efficacy of endovascular thrombectomy in acute stroke. Methods: Seven randomized trials compared endovascular thrombectomy with standard care between 2010 and 2017 (HERMES Collaboration). 1764 patients with large vessel stroke were allocated to endovascular thrombectomy (n=871) or standard care (n=893). Measurements included blood glucose on admission and functional outcome [modified Rankin Scale (mRS) range: 0-6; lower scores indicating less disability] at 3 months. The primary analysis evaluated whether glucose modified the effect of EVT over standard care on functional outcome, using ordinal logistic regression to test the interaction between treatment and glucose level. Results: Median (IQR) serum glucose on admission was 120 (104-140) mg/dl [6.6mmol/l (5.7-7.7) mmol/l]. Endovascular thrombectomy (EVT) was better than standard care in the overall pooled-data analysis [common odds ratio (acOR), 2.00 (95% CI 1.69–2.38); however, lower glucose levels were associated with greater effects of EVT over standard care. The interaction was nonlinear such that significant interactions were found in subgroups of patients split at glucose < or > 90mg/dl (5.0mmol/l) [(p=0.019 for interaction, acOR 3.81 (95% CI 1.73–8.41) for patients < 90 mg/dl vs 1.83 (95% CI 1.53–2.19) for patients > 90 mg/dl], and glucose < or > 100mg/dl (5.5mmol/l) [(p=0.004 for interaction, acOR 3.17 (95% CI 2.04–4.93) vs acOR 1.72 (95% CI 1.42–2.08)], but not between subgroups above these levels of glucose. Conclusions: Endovascular thrombectomy improved stroke outcomes compared to standard treatment regardless of glucose levels but the treatment effects were larger at lower glucose levels, with significant interaction effects persisting up to 90 to 100mg/dl (5.0-5.5mmol/l). Whether tight control of glucose improves the efficacy of endovascular thrombectomy following large vessel stroke warrants appropriate testing

Penumbral imaging and functional outcome in patients with anterior circulation ischaemic stroke treated with endovascular thrombectomy versus medical therapy: a meta-analysis of individual patient-level data

Background: CT perfusion (CTP) and diffusion or perfusion MRI might assist patient selection for endovascular thrombectomy. We aimed to establish whether imaging assessments of irreversibly injured ischaemic core and potentially salvageable penumbra volumes were associated with functional outcome and whether they interacted with the treatment effect of endovascular thrombectomy on functional outcome. Methods: In this systematic review and meta-analysis, the HERMES collaboration pooled patient-level data from all randomised controlled trials that compared endovascular thrombectomy (predominantly using stent retrievers) with standard medical therapy in patients with anterior circulation ischaemic stroke, published in PubMed from Jan 1, 2010, to May 31, 2017. The primary endpoint was functional outcome, assessed by the modified Rankin Scale (mRS) at 90 days after stroke. Ischaemic core was estimated, before treatment with either endovascular thrombectomy or standard medical therapy, by CTP as relative cerebral blood flow less than 30% of normal brain blood flow or by MRI as an apparent diffusion coefficient less than 620 μm2/s. Critically hypoperfused tissue was estimated as the volume of tissue with a CTP time to maximum longer than 6 s. Mismatch volume (ie, the estimated penumbral volume) was calculated as critically hypoperfused tissue volume minus ischaemic core volume. The association of ischaemic core and penumbral volumes with 90-day mRS score was analysed with multivariable logistic regression (functional independence, defined as mRS score 0–2) and ordinal logistic regression (functional improvement by at least one mRS category) in all patients and in a subset of those with more than 50% endovascular reperfusion, adjusted for baseline prognostic variables. The meta-analysis was prospectively designed by the HERMES executive committee, but not registered. Findings: We identified seven studies with 1764 patients, all of which were included in the meta-analysis. CTP was available and assessable for 591 (34%) patients and diffusion MRI for 309 (18%) patients. Functional independence was worse in patients who had CTP versus those who had diffusion MRI, after adjustment for ischaemic core volume (odds ratio [OR] 0·47 [95% CI 0·30–0·72], p=0·0007), so the imaging modalities were not pooled. Increasing ischaemic core volume was associated with reduced likelihood of functional independence (CTP OR 0·77 [0·69–0·86] per 10 mL, pinteraction=0·29; diffusion MRI OR 0·87 [0·81–0·94] per 10 mL, pinteraction=0·94). Mismatch volume, examined only in the CTP group because of the small numbers of patients who had perfusion MRI, was not associated with either functional independence or functional improvement. In patients with CTP with more than 50% endovascular reperfusion (n=186), age, ischaemic core volume, and imaging-to-reperfusion time were independently associated with functional improvement. Risk of bias between studies was generally low. Interpretation: Estimated ischaemic core volume was independently associated with functional independence and functional improvement but did not modify the treatment benefit of endovascular thrombectomy over standard medical therapy for improved functional outcome. Combining ischaemic core volume with age and expected imaging-to-reperfusion time will improve assessment of prognosis and might inform endovascular thrombectomy treatment decisions. Funding: Medtronic