Self management programmes for quality of life in people with stroke.

BACKGROUND: Stroke results from an acute lack of blood supply to the brain and becomes a chronic health condition for millions of survivors around the world. Self management can offer stroke survivors a pathway to promote their recovery. Self management programmes for people with stroke can include specific education about the stroke and likely effects but essentially, also focusses on skills training to encourage people to take an active part in their management. Such skills training can include problem-solving, goal-setting, decision-making, and coping skills. OBJECTIVES: To assess the effects of self management interventions on the quality of life of adults with stroke who are living in the community, compared with inactive or active (usual care) control interventions. SEARCH METHODS: We searched the following databases from inception to April 2016: the Cochrane Stroke Group Trials Register, Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE, CINAHL, PsycINFO, SCOPUS, Web of Science, OTSeeker, OT Search, PEDro, REHABDATA, and DARE. We also searched the following trial registries: ClinicalTrials.gov, Stroke Trials Registry, Current Controlled Trials, World Health Organization, and Australian New Zealand Clinical Trials Registry. SELECTION CRITERIA: We included randomised controlled trials of adults with stroke living in the community who received self management interventions. These interventions included more than one component of self management or targeted more than a single domain of change, or both. Interventions were compared with either an inactive control (waiting list or usual care) or active control (alternate intervention such as education only). Measured outcomes included changes in quality of life, self efficacy, activity or participation levels, impairments, health service usage, health behaviours (such as medication adherence or lifestyle behaviours), cost, participant satisfaction, or adverse events. DATA COLLECTION AND ANALYSIS: Two review authors independently extracted prespecified data from all included studies and assessed trial quality and risk of bias. We performed meta-analyses where possible to pool results. MAIN RESULTS: We included 14 trials with 1863 participants. Evidence from six studies showed that self management programmes improved quality of life in people with stroke (standardised mean difference (SMD) random effects 0.34, 95% confidence interval (CI) 0.05 to 0.62, P = 0.02; moderate quality evidence) and improved self efficacy (SMD, random effects 0.33, 95% CI 0.04 to 0.61, P = 0.03; low quality evidence) compared with usual care. Individual studies reported benefits for health-related behaviours such as reduced use of health services, smoking, and alcohol intake, as well as improved diet and attitude. However, there was no superior effect for such programmes in the domains of locus of control, activities of daily living, medication adherence, participation, or mood. Statistical heterogeneity was mostly low; however, there was much variation in the types and delivery of programmes. Risk of bias was relatively low for complex intervention clinical trials where participants and personnel could not be blinded. AUTHORS' CONCLUSIONS: The current evidence indicates that self management programmes may benefit people with stroke who are living in the community. The benefits of such programmes lie in improved quality of life and self efficacy. These are all well-recognised goals for people after stroke. There is evidence for many modes of delivery and examples of tailoring content to the target group. Leaders were usually professionals but peers (stroke survivors and carers) were also reported - the commonality is being trained and expert in stroke and its consequences. It would be beneficial for further research to be focused on identifying key features of effective self management programmes and assessing their cost-effectiveness.

Stroke Survivors' Experiences of Physical Rehabilitation: A Systematic Review of Qualitative Studies.

OBJECTIVE: To report and synthesize the perspectives, experiences, and preferences of stroke survivors undertaking inpatient physical rehabilitation through a systematic review of qualitative studies. DATA SOURCES: MEDLINE, CINAHL, Embase, and PsycINFO were searched from database inception to February 2014. Reference lists of relevant publications were searched. All languages were included. STUDY SELECTION: Qualitative studies reporting stroke survivors' experiences of inpatient stroke rehabilitation were selected independently by 2 reviewers. The search yielded 3039 records; 95 full-text publications were assessed for eligibility, and 32 documents (31 studies) were finally included. Comprehensiveness and explicit reporting were assessed independently by 2 reviewers using the consolidated criteria for reporting qualitative research framework. Discrepancies were resolved by consensus. DATA EXTRACTION: Data regarding characteristics of the included studies were extracted by 1 reviewer, tabled, and checked for accuracy by another reviewer. All text reported in studies' results sections were entered into qualitative data management software for analysis. DATA SYNTHESIS: Extracted texts were inductively coded and analyzed in 3 phases using thematic synthesis. Nine interrelated analytical themes, with descriptive subthemes, were identified that related to issues of importance to stroke survivors: (1) physical activity is valued; (2) bored and alone; (3) patient-centered therapy; (4) recreation is also rehabilitation; (5) dependency and lack of control; (6) fostering autonomy; (7) power of communication and information; (8) motivation needs nurturing; and (9) fatigue can overwhelm. CONCLUSIONS: The thematic synthesis provides new insights into stroke survivors' experiences of inpatient rehabilitation. Negative experiences were reported in all studies and include disempowerment, boredom, and frustration. Rehabilitation could be improved by increasing activity within formal therapy and in free time, fostering patients' autonomy through genuinely patient-centered care, and more effective communication and information. Future stroke rehabilitation research should take into account the experiences and preferences of stroke survivors.

A qualitative exploration of discharge destination as an outcome or a driver of acute stroke care.

BACKGROUND: Many patients with acute stroke do not receive recommended care in tertiary hospital settings. Allied health professionals have important roles within multidisciplinary stroke teams and influence the quality of care patients receive. Studies examining the role of allied health professionals in acute stroke management are scarce, and very little is known about the clinical decision making of these stroke clinicians. In this study we aimed to describe factors that influence the complex clinical decision making of these professionals as they prioritise acute stroke patients for recommended care. This qualitative study was part of a larger mixed methods study. METHODS: The qualitative methodology applied was a constructivist grounded theory approach.Fifteen allied health professionals working with acute stroke patients at three metropolitan tertiary care hospitals in South Australia were purposively sampled.Semi-structured interviews were conducted face to face using a question guide, and digital recording. Interviews were transcribed and analysed by two researchers using rigorous grounded theory processes. RESULTS: Our analysis highlighted 'predicted discharge destination' as a powerful driver of care decisions and clinical prioritisation for this professional group. We found that complex clinical decision making to predict discharge destination required professionals to concurrently consider patient's pre-stroke status, the nature and severity of their stroke, the course of their recovery and multiple factors from within the healthcare system. The consequences of these decisions had potentially profound consequences for patients and sometimes led to professionals experiencing considerable uncertainty and stress. CONCLUSIONS: Our qualitative enquiry provided new insights into the way allied health professionals make important clinical decisions for patients with acute stroke. This is the first known study to demonstrate that the subjective prediction of discharge destination made early in an acute admission by allied health professionals, has a powerful influence over the care and rehabilitation provided, and the ultimate outcomes for stroke patients.

Consumer engagement in health care policy, research and services: A systematic review and meta-analysis of methods and effects.

To assess the effects of consumer engagement in health care policy, research and services. We updated a review published in 2006 and 2009 and revised the previous search strategies for key databases (The Cochrane Central Register of Controlled Trials; MEDLINE; EMBASE; PsycINFO; CINAHL; Web of Science) up to February 2020. Selection criteria included randomised controlled trials assessing consumer engagement in developing health care policy, research, or health services. The International Association for Public Participation, Spectrum of Public Participation was used to identify, describe, compare and analyse consumer engagement. Outcome measures were effects on people; effects on the policy/research/health care services; or process outcomes. We included 23 randomised controlled trials with a moderate or high risk of bias, involving 136,265 participants. Most consumer engagement strategies adopted a consultative approach during the development phase of interventions, targeted to health services. Based on four large cluster-randomised controlled trials, there is evidence that consumer engagement in the development and delivery of health services to enhance the care of pregnant women results in a reduction in neonatal, but not maternal, mortality. From other trials, there is evidence that involving consumers in developing patient information material results in material that is more relevant, readable and understandable for patients, and can improve knowledge. Mixed effects are reported of consumer-engagement on the development and/or implementation of health professional training. There is some evidence that using consumer interviewers instead of staff in satisfaction surveys can have a small influence on the results. There is some evidence that consumers may have a role in identifying a broader range of health care priorities that are complementary to those from professionals. There is some evidence that consumer engagement in monitoring and evaluating health services may impact perceptions of patient safety or quality of life. There is growing evidence from randomised controlled trials of the effects of consumer engagement on the relevance and positive outcomes of health policy, research and services. Health care consumers, providers, researchers and funders should continue to employ evidence-informed consumer engagement in their jurisdictions, with embedded evaluation. Systematic review registration: PROSPERO CRD42018102595.

A holistic client-centred program for vulnerable frequent hospital attenders: cost efficiencies and changed practices.

OBJECTIVE: A small percentage of Australians frequently attend hospital emergency departments (ED) with potentially avoidable health crises. These individuals are termed 'vulnerable' due to their complex health and social needs. When these needs are unmanaged, unnecessary ED and hospital-admission costs are incurred. A holistic community-based program was developed to engage a cohort of vulnerable individuals in strategies to improve their health and health behaviours, and health service use. METHODS: A purposive sample of frequent ED attendees was identified in one Australian metropolitan health region. Core program elements included working with clients within their environment, problem solving, empowerment, education, goal setting and mentoring. Evaluation data included services provided for, and time spent with, clients; hospital admission and emergency department attendances and related costs; client engagement data; mental health measures; client stories and participant interviews. RESULTS: Data was analysed from 37 clients. On average, staff spent 34 hours with each client, costing approximately $1,700 each. Significant improvements resulted in client health and health behaviours. Crisis emergency department and inpatient admissions decreased, and planned outpatient clinic use increased. CONCLUSION: Low-cost community-based intervention for frequent ED attendees has the potential for significant tertiary hospital savings.