Dataset Information

Promoting community reintegration using narratives and skills building for young adults with stroke: a protocol for a randomised controlled trial.

ABSTRACT:

Background

Stroke in adults aged between 18 and 64?years old is increasing significantly worldwide. Studies have reported that this group of young stroke survivors encounters enormous difficulties reintegrating into their social roles. Individualised discussions with healthcare professionals and learning from other survivors are imperative for them to reconstruct their identities after stroke. There is also great demand for community support during their chronic stage of recovery to help them rebuild life skills to promote reintegration.

Methods/design

This is a randomised controlled trial to investigate the effects of a 24-week Narrative and Skills-building Intervention (NSI) on young stroke survivors' community reintegration and psychosocial outcomes. A total of 208 adults aged 18-64?years old with a first-ever or recurrent ischaemic or haemorrhagic stroke and have been discharged home will be recruited and randomly assigned to receive usual care or usual care with NSI. The NSI is grounded in Narrative Theory and Bandura's principles of Self-efficacy and Outcome Expectation, consisting of successive eight individual sessions over six months delivered by a trained facilitator (a registered nurse). Participants will be facilitated to narrate their survival experiences and rebuild core life skills. Videos of peer young stroke survivors' experiences of recovery will be provided. Outcomes including community reintegration, depressive symptoms, health-related quality of life, self-efficacy, outcome expectation and satisfaction with performance of self-management behaviours will be measured before (T0) and immediately after NSI (T1), then six (T2) and 12?months after NSI (T3). Generalised estimating equations models will be used to compare the differential changes in outcomes across time between the two groups. Focus group interviews will be conducted with the facilitator at T1 and with the participants in the intervention group at T1 and T3.

Discussion

This study will evaluate the short and long-term effects of a theory-based NSI on young stroke survivors' community reintegration and establish a new model of community reintegration after stroke to inform future research. The results will also provide valuable evidence to develop clinical guidelines for young stroke survivors' community reintegration.

Trial registration

ClinicalTrials.gov identifier: NCT04560140 , registered on 23 September, 2020.

SUBMITTER: Lo SHS

PROVIDER: S-EPMC7783975 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature

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Publications

Promoting community reintegration using narratives and skills building for young adults with stroke: a protocol for a randomised controlled trial.

Lo Suzanne Hoi Shan SHS Chau Janita Pak Chun JPC Choi Kai Chow KC Shum Edward Wai Ching EWC Yeung Jonas Hon Ming JHM Li Siu Hung SH

BMC neurology 20210104 1

<h4>Background</h4>Stroke in adults aged between 18 and 64 years old is increasing significantly worldwide. Studies have reported that this group of young stroke survivors encounters enormous difficulties reintegrating into their social roles. Individualised discussions with healthcare professionals and learning from other survivors are imperative for them to reconstruct their identities after stroke. There is also great demand for community support during their chronic stage of recovery to help ...[more]

PMID: 33397316

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Project description:IntroductionSystematic reviews reporting self-management interventions are associated with significant improvements in stroke survivors' self-efficacy, health-related quality of life (HRQoL) and independence. However, common barriers such as transportation and availability of carers were identified. Health coaching is suggested as an innovative and cost-effective care model with potential benefits in managing chronic diseases. A randomised controlled trial is proposed to evaluate the effectiveness of an enhanced self-management programme by health coaches on stroke survivors' recovery outcomes.Methods and analysisAll adult community-dwelling stroke survivors with a modified Rankin Scale Score ≥3 will be recruited from a community rehabilitation network. Eligible participants will be randomly allocated to receive either the enhanced stroke self-management programme (Coaching Ongoing Momentum Building On stroKe rEcovery journeY [COMBO-KEY]) plus usual care or usual care only. COMBO-KEY is an 8-week programme underpinned by Bandura's principles of self-efficacy and outcome expectation. It consists of four home visits and five phone-coaching sessions delivered by trained health coaches. Each participant will receive a resource package containing a workbook, a quick reference guide, a planning toolkit and 15 videos of peer survivors' stroke survival experience. Survivors' outcomes include self-efficacy, outcome expectation and satisfaction with performance of self-management behaviours, HRQoL, depressive symptoms and community reintegration. Assessment will be conducted at baseline and immediately after completing the programme. Generalised estimating equations' model will be used to analyse the data.DiscussionIt is anticipated that the programme will build community capacity in supporting stroke survivors. The results will shed light on integrating the programme into the current stroke rehabilitation services.Ethics and disseminationThe Joint Chinese University of Hong Kong-New Territories East Cluster Clinical Research Ethics Committee has approved this protocol (CREC Ref. No.: 2018.009). Written informed consent will be obtained from all participants. Study results will be disseminated through peer-reviewed journals and presentations at local and international conferences.Trial registration numberClinicalTrials.gov Identifier: NCT03741842; Pre-results.

Project description:Aim:The aim of this study was to compare client community reintegration status following discharge from the Kachere Rehabilitation Centre (KRC), Blantyre, Malawi, in 2 consecutive years with client versus guardian perspectives on reintegration status. Methods:Using quantitative methods, 35 clients with stroke and non-stroke diagnoses (spinal cord dysfunction and neuropathic conditions) and 32 client guardians (the family caregivers in Malawi) were separately interviewed using the WHO Disability Assessment Schedule (DAS) 2.0 (a measure of disability due to reintegration problems back into the community). The results were analyzed using descriptive statistics and the Wilcoxon Signed-Rank Test or the Mann-Whitney U Test, as appropriate, to test for significant differences between groups. The clients' home environments were categorized using an original checklist, the Home Observation Data Form (HOD). Results:Moderate to severe perceived levels of disability related to reintegration difficulties were noted by clients in years 1 and 2. For those with non-stroke diagnoses, there was a significant change in year 2 results compared to year 1, but not for those with stroke diagnoses. Guardians agreed with their client's perceptions of difficulty in year 2. Major areas of concern were taking care of household responsibilities, participating in day-to-day work or school routines, joining in community activities, and walking one kilometer per day. Conclusions:Community reintegration challenges in suburban Blantyre, Malawi continued to plague individuals with stroke and non-stroke diagnoses for 2 consecutive years after discharge from KRC. Based on the important role guardians play during their client's rehabilitation phase and when they return to the community, opportunities may exist to improve client perception of disability related to their reintegration status. Future studies are important to replicate these results, investigate the idea of a more important role for guardians in patient-centered care, and the relationship between motor and cognitive function and reintegration status.

Project description:Extensive studies have documented the complex and comprehensive psychosocial consequences of stroke. Psychosocial difficulties significantly affect long-term functioning and quality of life. Many studies have explored psychosocial interventions to prevent or treat psychosocial problems, but most have found modest effects. This study evaluated, from the perspective of adult stroke survivors, (1) the content, structure and process and (2) experienced usefulness of a dialogue-based psychosocial nursing intervention in primary care aimed at promoting psychosocial health and wellbeing.This was part of a feasibility study guided by the UK MRC complex interventions framework. It consisted of dialogue-based encounters with trained health professionals during approximately the first year poststroke. It was tested in two formats; individual or group encounters. Inclusion criteria were: Acute stroke, above 18 y.o., sufficient physical and cognitive functioning to participate. Data were collected immediately before, during and 14 days after the completion of the intervention. Pre- and post-data included medical and demographic data, quality of life, emotional wellbeing, life satisfaction, anxiety and depression. Qualitative interviews focusing on participant experiences were conducted two weeks following the intervention. Log notes taken by the health professionals conducting the intervention and work sheets filled in by participants also comprised data. Data analysis was case-oriented. The structured instruments were analysed regarding completeness of data and indication of changes in outcome variables. The qualitative interviews, log notes and work sheets were analysed using thematic content analysis.Twenty-five stroke survivors (17 men, 8 women), median age 64 (range 33-89), participated. Physical limitations varied from mild to severe. Seven participants had moderate to severe expressive aphasia. The participants found the content and process of the intervention relevant. Both the individual and group formats were found useful. Patients with aphasia reported that there were too few encounters (eight encounters were originally planned). The participants underscored the benefits of being supported through a difficult time, having a chance to tell and (re)create their story and being supported in their attempts to cope with the situation.This study provides initial support for the usefulness of the psychosocial intervention and highlights areas requiring further consideration and development.ClinicalTrials.gov Identifier: NCT01912014.

Project description:IntroductionStroke is a globally common disease that has detrimental effects on the individual and, more broadly, on society. Lifestyle change can contribute to reducing risk factors for stroke. Although a healthy lifestyle has direct benefits, sustaining and incorporating healthy activities into everyday life is a challenge. Engaging everyday activities have the potential to support lifestyle change and to promote sustainable activity patterns. Current healthcare is failing to reduce modifiable risk factors in people at risk, and in addition to current practice, there is a need for systematic and efficient non-pharmacological and non-surgical stroke-prevention strategies. The aim of the pilot study was to increase knowledge about the effects of a prevention programme and its feasibility to promote sustainable and healthy activity patterns among persons at risk of stroke.Methods and analysisThe proposed pilot study will be a two-armed randomised, assessor-blinded, parallel pilot trial. The study will include feasibility data, investigating acceptability and delivery of the intervention. Persons at risk of stroke (n=60) will be included in a mobile phone-supported prevention programme. The 10-week programme will be conducted at primary healthcare clinics, combining group meetings and online resources to support self-management of lifestyle change. Main outcomes are stroke risk, lifestyle habits and healthy activity patterns. Assessments will be performed at baseline and at follow-up (immediately following the end of the programme and at 6 and 12 months). Effects of the programme will be analysed using inferential statistics. Feasibility will be analysed using both qualitative and quantitative methods.Ethics and disseminationThe study has been approved by the Regional Ethical Review Board in Stockholm, Sweden, being granted reference numbers 2015/834-31, 2016/2203-32 and 2019/01444. Study results will be disseminated through peer-review journals and presentations to mixed audiences at regional and international conferences.Trial registration numberNCT03730701.

Project description:IntroductionThe 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 analysisA 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 disseminationNational 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 numberNCT02429180; Pre-results.

Project description:IntroductionThe STRoke Interactive Virtual thErapy (STRIVE) intervention provides community-dwelling stroke survivors access to individualised, remotely supervised progressive exercise training via an online platform. This trial aims to determine the clinical efficacy of the STRIVE intervention and its effect on brain activity in community-dwelling stroke survivors.Methods and analysisIn a multisite, assessor-blinded randomised controlled trial, 60 stroke survivors >3 months poststroke with mild-to-moderate upper extremity impairment will be recruited and equally randomised by location (Melbourne, Victoria or Launceston, Tasmania) to receive 8 weeks of virtual therapy (VT) at a local exercise training facility or usual care. Participants allocated to VT will perform 3-5 upper limb exercises individualised to their impairment severity and preference, while participants allocated to usual care will be asked to maintain their usual daily activities. The primary outcome measures will be upper limb motor function and impairment, which will be assessed using the Action Research Arm Test and Upper Extremity Fugl-Meyer, respectively. Secondary outcome measures include upper extremity function and spasticity, as measured by the box and block test and Modified AshworthScale, respectively, and task-related changes in bilateral sensorimotor cortex haemodynamics during hand reaching and wrist extension movements as measured by functional near-infrared spectroscopy. Quality of life will be measured using the Euro-Quality of Life-5 Dimension-5 Level Scale, and the Motor Activity Log-28 will be used to measure use of the hemiparetic arm. All measures will be assessed at baseline and immediately postintervention.Ethics and disseminationThe study was approved by the Deakin University Human Research Ethics Committee in May 2017 (No. 2017-087). The results will be disseminated in peer-reviewed journals and presented at major international stroke meetings.Trial registration numberACTRN12617000745347; Pre-results.

Dataset Information

Promoting community reintegration using narratives and skills building for young adults with stroke: a protocol for a randomised controlled trial.

Background

Methods/design

Discussion

Trial registration

Publications

Promoting community reintegration using narratives and skills building for young adults with stroke: a protocol for a randomised controlled trial.

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