Information provision for stroke patients and their caregivers

Förster, Anne; Brown, Lesley; Smith, J. L.; House, Allan; Knapp, Peter H.; Wright, John; Young, John

doi:10.1002/14651858.cd001919.pub3

Cited by 229 publications

(235 citation statements)

References 132 publications

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“…Of the reviews, 14 [19][20][21][22][23][24][25][26][27][28][29][30][31][32] focused on interventions for carers of people with dementia, four [33][34][35][36] focused on carers of people with cancer, four [37][38][39][40][41] focused on carers of people with stroke, three [42][43][44] focused on carers of people with various conditions at the end of life and two 45,46 focused on carers of people with mental health problems. Not all reviews reported the geographic location of the included primary studies.…”

Section: Overview Of the High-quality Reviewsmentioning

confidence: 99%

“…Multicomponent interventions were the focus in many reviews; those with psychosocial or psychoeducational content featured prominently, 28,[34][35][36][37][38]46 as did those containing education and/or communication skills training. 21,24,26,40,44,45 Other (more specific) interventions included stroke liaison workers, 39 volunteer mentoring, 32 meditation-based activity, 23 art-making classes 33 and home-based exercise. 29 Control or comparator groups (when reported) were usual care, no control, other active intervention, wait list or placebo.…”

Section: Overview Of the High-quality Reviewsmentioning

confidence: 99%

“…A quality assessment of primary studies was carried out in 25 [19][20][21][23][24][25][26][27][28][29][30][31][32][33][35][36][37][38][39][40][41][42][43][44][45][46] of the 27 included reviews. In most cases, it was possible to determine at least the overall quality of the included studies.…”

Section: Quality Of the Primary Studiesmentioning

confidence: 99%

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Updated meta-review of evidence on support for carers

Thomas

Dalton

Harden

et al. 2017

Health Serv Deliv Res

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BackgroundPolicy and research interest in carers continues to grow. A previous meta-review, published in 2010, by Parkeret al.(Parker G, Arksey H, Harden M.Meta-review of International Evidence on Interventions to Support Carers. York: Social Policy Research Unit, University of York; 2010) found little compelling evidence of effectiveness about specific interventions and costs.ObjectiveTo update what is known about effective interventions to support carers of ill, disabled or older adults.DesignRapid meta-review.SettingAny relevant to the UK health and social care system.ParticipantsCarers (who provide support on an unpaid basis) of adults who are ill, disabled or older.InterventionsAny intervention primarily aimed at carers.Main outcome measuresAny direct outcome for carers.Data sourcesDatabase searches (including Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, MEDLINE, Applied Social Sciences Index and Abstracts and Social Care Online) for systematic reviews published from January 2009 to 2016.Review methodsWe used EndNote X7.4 (Thomson Reuters, CA, USA) to screen titles and abstracts. Final decisions on the inclusion of papers were made by two reviewers independently, using a Microsoft Excel®2013 spreadsheet (Microsoft Corporation, Redmond, WA, USA). We carried out a narrative synthesis structured by patient condition and by seven outcomes of interest. We assessed the quality of the included systematic reviews using established criteria. We invited a user group of carers to give their views on the overall findings of our review.ResultsSixty-one systematic reviews were included (27 of high quality, 25 of medium quality and nine of low quality). Patterns in the literature were similar to those in earlier work. The quality of reviews had improved, but primary studies remained limited in quality and quantity. Of the high-quality reviews, 14 focused on carers of people with dementia, four focused on carers of those with cancer, four focused on carers of people with stroke, three focused on carers of those at the end of life with various conditions and two focused on carers of people with mental health problems. Multicomponent interventions featured prominently, emphasising psychosocial or psychoeducational content, education and training. Multiple outcomes were explored, primarily in mental health, burden and stress, and well-being or quality of life. Negative effects following respite care were unsupported by our user group. As with earlier work, we found little evidence on intervention cost-effectiveness. No differences in review topics were found across high-, medium- and low-quality reviews.LimitationsThe nature of meta-reviews precludes definitive conclusions about intervention effectiveness, for whom and why. Many of the included reviews were small in size and authors generally relied on small numbers of studies to underpin their conclusions. The meta-review was restricted to English-language publications. Short timescales prevented any investigation of the overlap of primary studies, and growth in the evidence base since the original meta-review meant that post-protocol decisions were necessary.ConclusionsThere is no ‘one size fits all’ intervention to support carers. Potential exists for effective support in specific groups of carers. This includes shared learning, cognitive reframing, meditation and computer-delivered psychosocial support for carers of people with dementia, and psychosocial interventions, art therapy and counselling for carers of people with cancer. Counselling may also help carers of people with stroke. The effectiveness of respite care remains a paradox, given the apparent conflict between the empirical evidence and the views of carers.Future workMore good-quality, theory-based, primary research is warranted. Evidence is needed on the differential impact of interventions for various types of carers (including young carers and carers from minority groups), and on the effectiveness of constituent parts in multicomponent programmes. Further research triangulating qualitative and quantitative evidence on respite care is urgently required. The overlap of primary studies was not formally investigated in our review, and this warrants future evaluation.Study registrationThis study is registered as PROSPERO CRD42016033367.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: Overview Of the High-quality Reviewsmentioning

confidence: 99%

Section: Overview Of the High-quality Reviewsmentioning

confidence: 99%

See 1 more Smart Citation

Updated meta-review of evidence on support for carers

Thomas

Dalton

Harden

et al. 2017

Health Serv Deliv Res

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“…These support needs are common across countries and care systems [21]. Carers report insufficient information and training about stroke and stroke care services, particularly post-discharge from acute settings [17,22]. High levels of anxiety and stress are commonplace as carers deal on a long-term basis with change and uncertainty [19,23].…”

Section: Caring After Strokementioning

confidence: 99%

The human dimensions of post-stroke homecare: experiences of older carers from diverse ethnic groups

Pound

Greenwood

2016

Disability and Rehabilitation

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Purpose: Very little is known about how older people from black and minority ethnic (BME) groups caring for someone after a stroke access and engage with social care services. This paper explores both the experiences of carers whose relative was receiving social care services in their own home and the value of a theory of humanising care to understand and explain these experiences. Method Conclusions:Carers from BME and White British groups share many experiences of homecare although language and cultural difference may exacerbate common pressures and stresses. The framework for humanising care is a useful tool to evaluate aspects of home care that are responsive to dignity and diversity.

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“…(2)(3)(4) Caregivers often report insufficient knowledge or skills to care for the stroke survivor, (5) but appropriate and effective educational tools are still lacking. (6) Observational learning (7) is a well-established tool for professional teaching and adult learning (8,9) and can effectively improve acquisition of motor skills (10) , psychological responses (10) , and behavioural changes. (11) However, there is limited evidence of its effectiveness post-stroke.…”

Section: Introductionmentioning

confidence: 99%

Methodology of the Stroke Self-Management Rehabilitation Trial: An International, Multisite Pilot Trial

Jones

Bhattacharjee

Krishnamurthi

et al. 2015

Journal of Stroke and Cerebrovascular Diseases

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Rationale: Stroke is a major cause of long-term adult disability with many survivors living in the community relying on family members for on-going support. However, reports of inadequate understanding of rehabilitation techniques are common. A self-management DVD-based observational learning tool may help improve functional outcomes for survivors of stroke and reduce caregivers' burden.Aims: This article describes the methodology of the stroke self-management rehabilitation trial. The overall aim of this pilot trial is to assess the feasibility and preliminary efficacy of a DVD-based intervention for improving functional outcomes of survivors of stroke 2 months post-randomization to inform the design of a full scale randomised clinical trial.Design: Recruitment of a minimum of 20 survivors of stroke and their informal caregivers (where available) in each of the participating centres will occur across multiple international sites. Following baseline assessments, participants will be randomly assigned to an intervention or standard care group. The intervention comprises a structured DVD observation and practice schedule over 8-weeks. All participants will complete follow-up assessments. Study outcomes:The outcome measures will include a global shift in the modified Rankin Scale scores as well as dichotomised scores, changes in quality of life, general health, depression and caregiver burden at 2 months post-randomization. A qualitative analysis of the effects of the intervention will also be undertaken. Discussion:The results of the pilot study will provide knowledge of whether observational learning techniques delivered via DVD can effectively improve recovery following stroke and reduce caregiver burden.3

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Information provision for stroke patients and their caregivers

Abstract: Trusted evidence. Informed decisions. Better health.

Cited by 229 publications

References 132 publications

Updated meta-review of evidence on support for carers

Updated meta-review of evidence on support for carers

The human dimensions of post-stroke homecare: experiences of older carers from diverse ethnic groups

Methodology of the Stroke Self-Management Rehabilitation Trial: An International, Multisite Pilot Trial

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