Update on the State of the Evidence for Stroke Family Caregiver and Dyad Interventions

Bakas, Tamilyn; McCarthy, Michael J.; Miller, Elaine Tilka

doi:10.1161/strokeaha.117.016052

Cited by 100 publications

(165 citation statements)

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“…Reviews of evidence of interventions directed at the caregiver and at patient/carer dyads suggest that the former are more effective to improve carer outcome, and the latter to improve patient outcome. [ 89 , 90 ]…”

Section: Discussionmentioning

confidence: 99%

Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services – A systematic review and meta-ethnography

et al. 2018

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ObjectiveTo describe and explain stroke survivors and informal caregivers’ experiences of primary care and community healthcare services. To offer potential solutions for how negative experiences could be addressed by healthcare services.DesignSystematic review and meta-ethnography.Data sourcesMedline, CINAHL, Embase and PsycINFO databases (literature searched until May 2015, published studies ranged from 1996 to 2015).Eligibility criteriaPrimary qualitative studies focused on adult community-dwelling stroke survivors’ and/or informal caregivers’ experiences of primary care and/or community healthcare services.Data synthesisA set of common second order constructs (original authors’ interpretations of participants’ experiences) were identified across the studies and used to develop a novel integrative account of the data (third order constructs). Study quality was assessed using the Critical Appraisal Skills Programme checklist. Relevance was assessed using Dixon-Woods’ criteria.Results51 studies (including 168 stroke survivors and 328 caregivers) were synthesised. We developed three inter-dependent third order constructs: (1) marginalisation of stroke survivors and caregivers by healthcare services, (2) passivity versus proactivity in the relationship between health services and the patient/caregiver dyad, and (3) fluidity of stroke related needs for both patient and caregiver. Issues of continuity of care, limitations in access to services and inadequate information provision drove perceptions of marginalisation and passivity of services for both patients and caregivers. Fluidity was apparent through changing information needs and psychological adaptation to living with long-term consequences of stroke.LimitationsPotential limitations of qualitative research such as limited generalisability and inability to provide firm answers are offset by the consistency of the findings across a range of countries and healthcare systems.ConclusionsStroke survivors and caregivers feel abandoned because they have become marginalised by services and they do not have the knowledge or skills to re-engage. This can be addressed by: (1) increasing stroke specific health literacy by targeted and timely information provision, and (2) improving continuity of care between specialist and generalist services.Systematic review registration numberPROSPERO 2015:CRD42015026602

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Section: Discussionmentioning

confidence: 99%

Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services – A systematic review and meta-ethnography

et al. 2018

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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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“…43 Integration of informal caregiving costs into economic evaluations of illnesses such as CVD will help to avoid underinvesting for intervention strategies for these conditions. 43 For example, several studies have been designed and tested with informal caregivers of individuals with heart failure 13,[62][63][64][86][87][88][89] and stroke, [90][91][92] with some including cost analyses or estimated costs of intervention delivery. 93,94 Scientific guidelines recommend that informal caregivers be included in the care of individuals with CVD, 86,90,95 yet implementation of evidence-based strategies to support informal caregivers remains a challenge in today's healthcare system, primarily because of a lack of allocated resources within healthcare systems.…”

Section: Future Research Opportunities and Policy Implications Researmentioning

confidence: 99%

Projected Costs of Informal Caregiving for Cardiovascular Disease: 2015 to 2035: A Policy Statement From the American Heart Association

Dunbar¹,

Khavjou²,

Bakas³

et al. 2018

Circulation

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INTRODUCTION:In a recent report, the American Heart Association estimated that medical costs and productivity losses of cardiovascular disease (CVD) are expected to grow from $555 billion in 2015 to $1.1 trillion in 2035. Although the burden is significant, the estimate does not include the costs of family, informal, or unpaid caregiving provided to patients with CVD. In this analysis, we estimated projections of costs of informal caregiving attributable to CVD for 2015 to 2035. METHODS:We used data from the 2014 Health and Retirement Survey to estimate hours of informal caregiving for individuals with CVD by age/sex/race using a zero-inflated binomial model and controlling for sociodemographic factors and health conditions. Costs of informal caregiving were estimated separately for hypertension, coronary heart disease, heart failure, stroke, and other heart disease. We analyzed data from a nationally representative sample of 16 731 noninstitutionalized adults ≥54 years of age. The value of caregiving hours was monetized by the use of home health aide workers' wages. The per-person costs were multiplied by census population counts to estimate nation-level costs and to be consistent with other American Heart Association analyses of burden of CVD, and the costs were projected from 2015 through 2035, assuming that within each age/sex/racial group, CVD prevalence and caregiving hours remain constant. RESULTS:The costs of informal caregiving for patients with CVD were estimated to be $61 billion in 2015 and are projected to increase to $128 billion in 2035. Costs of informal caregiving of patients with stroke constitute more than half of the total costs of CVD informal caregiving ($31 billion in 2015 and $66 billion in 2035). By age, costs are the highest among those 65 to 79 years of age in 2015 but are expected to be surpassed by costs among those ≥80 years of age by 2035. Costs of informal caregiving for patients with CVD represent an additional 11% of medical and productivity costs attributable to CVD. CONCLUSIONS:The burden of informal caregiving for patients with CVD is significant; accounting for these costs increases total CVD costs to $616 billion in 2015 and $1.2 trillion in 2035. These estimates have important research and policy implications, and they may be used to guide policy development to reduce the burden of CVD on patients and their caregivers.

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Update on the State of the Evidence for Stroke Family Caregiver and Dyad Interventions

Cited by 100 publications

References 23 publications

Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services – A systematic review and meta-ethnography

Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services – A systematic review and meta-ethnography

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

Projected Costs of Informal Caregiving for Cardiovascular Disease: 2015 to 2035: A Policy Statement From the American Heart Association

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