Updated meta-review of evidence on support for carers

Thomas, Siân; Dalton, Jane; Harden, Melissa; Eastwood, Alison; Parker, Gillian

doi:10.3310/hsdr05120

Cited by 37 publications

(46 citation statements)

References 67 publications

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“…There is considerable policy interest in how best to support carers, especially those who care long term. Despite a substantive and sustained research focus on establishing evidence about what constitutes “effective” interventions and support for carers the work is beset with methodological weaknesses and is equivocal, contradictory and often inconclusive (Arksey, Jackson, & Croucher, , Mason et al, , Lopez‐Hartmann, Wens, Verhoeven, & Remmen, , Thomas, Dalton, Harden, Eastwood, & Parker, ).…”

Section: Key Findings and Reflectionsmentioning

confidence: 99%

“…Specific interventions that have been evidenced as effective include: caregiver support groups; telephone counselling; educational programmes; art therapy; meditation‐based interventions; computer‐mediated interventions; cognitive reframing; couple‐based interventions; and psychosocial interventions. Examples of positive effects of such interventions are reduced depression, anxiety and stress levels and improved relationship and family functioning (McKechnie, Barker, & Stott, ; Thomas et al, ).…”

Section: Key Findings and Reflectionsmentioning

confidence: 99%

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Carer‐related research and knowledge: Findings from a scoping review

Larkin

Henwood²,

Milne

2018

Health Soc Care Community

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The review discussed in this paper provides a unique synthesis of evidence and knowledge about carers. The authors adopted a scoping review methodology drawing on a wide range of material from many different sources published between 2000 and 2016. It offers key insights into what we know and how we know it; reinforces and expands evidence about carers' profile; shows knowledge is uneven, e.g. much is known about working carers, young carers and carers of people with dementia but far less is about older carers or caring for someone with multiple needs. A striking feature of much research is a focus on caring as a set of tasks, rather than a dimension of an, often dyadic, relationship. While there is substantive evidence about the negative impact of caring, the review suggests that links between caring and carer outcomes are neither linear nor inevitable and vary in depth and nature. A reliance on cross-sectional studies using standardised measures is a major weakness of existing research: this approach fails to capture the multidimensionality of the caring role, and the lived experience of the carer. Although research relating to formal support suggests that specific interventions for particular groups of carers may be effective, overall the evidence base is weak. There is a tension between cost-effectiveness and what is valued by carers. Developing robust evaluative models that accommodate this tension, and take account of the dyadic context of caring is a critical challenge. A fundamental deficit of carer-related research is its location in one of two, largely separate, paradigmatic frameworks: the "Gatherers and Evaluators" and the "Conceptualisers and Theorisers." The authors suggest that developing an integrated paradigm that draws on the strengths and methods of existing paradigms, has considerable potential to generate new knowledge and new evidence and extend understanding of care and caring.

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Section: Key Findings and Reflectionsmentioning

confidence: 99%

Section: Key Findings and Reflectionsmentioning

confidence: 99%

Carer‐related research and knowledge: Findings from a scoping review

Larkin

Henwood²,

Milne

2018

Health Soc Care Community

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“…More recently, an updated metareview of evidence on support for carers suggested that contact between the carers of people with dementia and other people who know about dementia may improve some aspects of carers' mental health and their perceptions of burden and stress. 21 However, very different types of intervention seemed to produce this effect, and it was often not clear what control groups were experiencing as 'usual care', making it difficult to come to robust conclusions about how best to provide support.…”

Section: The Need For the Researchmentioning

confidence: 99%

“…This is largely because of the relative paucity and poor quality of existing evaluative research. [20][21][22] A particular weakness in the evidence base is the lack of studies that can throw any light on the cost-effectiveness of interventions to support carers. When there is evidence of effectiveness, there is rarely evidence of costs, whether to health and social care services or to carers and families themselves.…”

Section: Chapter 1 Introductionmentioning

confidence: 99%

Specialist nursing support for unpaid carers of people with dementia: a mixed-methods feasibility study

Gridley

Aspinal

Parker

et al. 2019

Health Serv Deliv Res

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Background Unpaid carers are the mainstay of support for people with dementia. Admiral Nursing (AN) is the only specialist nursing service that specifically focuses on supporting such carers, but evidence of its effectiveness, costs and relationships with other health and social care services is limited. This project aimed to address this gap and explore the feasibility of a full-scale formal evaluation. Objectives To explore the relationships between characteristics of carers and people with dementia, service type and input and outcomes; to develop and test data collection methods for subsequent economic evaluation; to explore the effect of AN on outcomes and costs, compared with usual care; to explore the perceived system-wide impact of specialist support for carers of people with dementia, compared with usual care; and to implement new data collection methods in AN, which could also be used by other services, to facilitate evaluation. Design A mixed-methods study, using secondary analysis of an administrative data set, and primary (cross-sectional) quantitative and qualitative data collection. Setting Qualitative research with carers in four areas of England; a survey of carers in 32 local authority areas (16 with and 16 without AN); and qualitative interviews with professionals in four areas. Participants Thirty-five carers of people with dementia and 20 professionals were interviewed qualitatively; 346 carers completed in-scope questionnaires (46% through AN services and 54% from matched non-AN areas). Interventions Specialist nursing support for carers of people with dementia (with AN as an exemplar) compared with usual care. Main outcome measures The Adult Social Care Outcomes Toolkit for Carers; the EuroQol-5 Dimensions, five-level version; and the Caregiver Self-Efficacy for Managing Dementia Scale. Data sources Dementia UK’s AN administrative data set. Results Admiral Nurses are successfully targeting the most complex cases. They work predominantly with older carers who have the main responsibility for the person with dementia, who are heavily involved in caring activity and who may be at risk. Three outcome areas that are important to carers of people with dementia and are potentially affected by receiving support are (1) carer self-efficacy, (2) carer quality of life (3) and carer mental and physical health. The carers in the survey receiving support from AN were older, were more heavily involved in caring and had poorer outcomes than carers not in receipt of such support. When these differences were controlled for, carers supported by AN had better outcomes, although the differences did not reach statistical significance. Health and social care costs were similar in both groups. The perceived system-wide impact of services, such as AN, is not well understood by professional stakeholders. Limitations Challenges were experienced in identifying similar carers in areas with or without an AN service and in the cross-sectional nature of the work. Conclusions Specialist nursing support to carers of people with dementia may enable them to continue providing care to the end or very close to the end of the dementia journey. The outcomes for such carers may be no different from, or even slightly better than, those of similar carers without this support, although the costs to health and social care services are the same in each case. Future work Future research could investigate the impact of specialist support for carers on admission to long-term care. There is also a need for more work to encourage routine use of the selected outcome measures in dementia service delivery. Funding The National Institute for Health Research Health Services and Delivery Research programme.

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“…Existing research has highlighted the significance of providing support to enhance caregiver adaption [57] [58]. Of the promising interventions, problem-solving is promising in obtaining positive caregiver outcomes [9].…”

Section: Discussionmentioning

confidence: 99%

Problem-Solving Based Intervention for Informal Caregivers: A Scoping Review

Tao¹,

Zhang²

2019

OJN

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Background: Caregiving for someone is a huge task for informal caregivers. The caregiving role is often challenging and overwhelming for them. Stress, burden, and depression have been frequently identified as the negative caregiving experiences. This systematic review synthesized the available evidence for the problem-based intervention provided for caregivers as there is little insight about the effects of problem-based intervention on caregivers. Objectives: To describe: 1) the design of problem-solving intervention; 2) the effects of problem-solving intervention for caregiver outcomes. Methods: This review followed Arksey and O'Malley's methodological framework for conducting scoping reviews which entail setting research questions, selecting relevant studies, charting the data and synthesizing the results. FPRISMA guidelines were adopted and several databases were searched including MED-LINE; EMBASE; web of science. This review contains literature from 2012 to 2019 on problem-solving-based intervention which intended to caregivers. Results: 41 publications representing 27 unique problem-based interventions. Problem-solving-based intervention has different extent effects on caregiver emotion status, burden and quality of life. Conclusions: Problem-solving intervention is promising in caregiver intervention which could reduce caregiver depression, anxiety and burden.

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Updated meta-review of evidence on support for carers

Cited by 37 publications

References 67 publications

Carer‐related research and knowledge: Findings from a scoping review

Carer‐related research and knowledge: Findings from a scoping review

Specialist nursing support for unpaid carers of people with dementia: a mixed-methods feasibility study

Problem-Solving Based Intervention for Informal Caregivers: A Scoping Review

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