Interventions for supporting informal caregivers of patients in the terminal phase of a disease

Candy, Bridget; Jones, Louise; Drake, Robyn; Leurent, Baptiste; King, Michael

doi:10.1002/14651858.cd007617.pub2

Cited by 176 publications

(173 citation statements)

References 71 publications

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“…36 Limitations and variable study quality were also reported in reviews of interventions for carers of people with stroke. 37,38,40,41 Reviews addressing carers of people with various conditions at the end of life indicated studies of unclear quality, 42 mixed-quality studies 43 or studies at serious risk of bias, particularly in those focusing on carer outcomes. 44 Low-to moderate-quality primary studies were reported in one review 46 focusing on carers of people with mental health problems.…”

Section: Resultsmentioning

confidence: 99%

“…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%

“…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%

“…Eleven reviews undertook narrative synthesis 19,[21][22][23]28,32,35,36,[43][44][45] and six undertook quantitative synthesis. 20,26,27,29,30,34 Ten reviews 24,25,31,33,[37][38][39][40][41][42]46 contributed both narrative and quantitative syntheses. Two references 37,38 relate to the same review.…”

Section: Approach To Synthesismentioning

confidence: 99%

“…28,34,35,[37][38][39]42,43 Physical health (when defined) included physical distress, physical functioning, somatic complaints, perceived or subjective health status and sleep improvement. Some formal outcome measures were reported.…”

Section: Physical Healthmentioning

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: Resultsmentioning

confidence: 99%

Section: Overview Of the High-quality Reviewsmentioning

confidence: 99%

Section: Quality Of the Primary Studiesmentioning

confidence: 99%

Section: Approach To Synthesismentioning

confidence: 99%

Section: Physical Healthmentioning

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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Family Caregivers Needed—No Training Provided

2019

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Objective: This study was conducted with the aim of investigating the influence of the education provided to the caregivers of bedridden patients in accordance with the Ausubel's expository teaching strategy on the patients and the caregivers. Material and Methods: The randomized controlled intervention study included 132 patients (66 males and 66 females) in intervention group and 132 patients in control group and their family caregivers. In the first stage, the healthcare professionals for home care were given en education. In the second stage, 20-hour training intervention was carried out as expository within the frame of requirements determined for family caregivers. The control group was included in the routine program within the scope of home care service. The efficiency of these interventions was evaluated by using knowledge test of bedridden patient care, Zarit burden interview, inventory on evaluation of care provided by family members, pressure sore risk definition form (Braden Scale), and geriatric depression scale (GDS). Results: Intervention and control groups were found to be similar with regard to the parameters measured in pre-test. It was determined that after the training intervention, the caregivers had an increased knowledge level of bedridden patient care (p<0,001), their care burden significantly decreased (p<0.001), the efficiency of care provided by the family members was significant in favor of the interventiongroup (p<0.05),risk level of pressure sores of the patients was lower in the intervention group compared to control group (p<0.05), the median value of geriatric depression in bedridden patients decreased from 18 to 15 in intervention group, and their depression symptoms decreased (p<0.05).Conclusion: The education given as expository to family caregivers of bedridden patients was effective in increasing the caregiving competence, reducing the care burden, increasing the caregiving knowledge level, reducing the pressure risk and decreasing depression level of the patients.

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