Carers’ needs in advanced heart failure: A systematic narrative review

Doherty, Leanne C; Fitzsimons, Donna; McIlfatrick, Sonja

doi:10.1177/1474515115585237

Cited by 71 publications

(99 citation statements)

References 35 publications

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“…Several reviews have evaluated particular aspects of HF family caregiving, including general experiences [12], relationship quality [13], needs [14], burden [15, 16], roles in patient self-care [17–19] and left ventricular assist device management [20]. However, to our knowledge, the evidence-base of original research focused on HF family caregiving has yet to be assessed in its entirety in order to inform future research directions and priorities in HF palliative care.…”

Section: Introductionmentioning

confidence: 99%

Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review

et al. 2017

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Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence-base to guide care for this population has not been comprehensively assessed. In order to appraise the state-of-the-science of HF family caregiving and recommend areas for future research, the aims of this review were to summarize: 1) how caregivers influence patients, 2) the consequences of HF for caregivers, and 3) interventions directed at HF caregivers. We reviewed all literature to December 2015 in PubMed and CINAHL using the search terms “heart failure” AND “caregiver.” Inclusion criteria dictated that studies report original research of HF family caregiving. Articles focused on children or instrument development or aggregated HF with other illnesses were excluded. We identified 120 studies, representing 5,700 caregivers. Research on this population indicates that: 1) caregiving situations vary widely with equally wide-ranging tasks for patients to help facilitate their health behaviors, psychological health and relationships, and quality of life (QoL); 2) caregivers have numerous unmet needs that fluctuate with patients’ unpredictable medical status, are felt to be ignored by the formal healthcare system, and can lead to distress, burden, and reduced QoL; and 3) relatively few interventions have been developed and tested that effectively support HF family caregivers. We provide recommendations to move the science forward in each of these areas that moves beyond descriptive work to intervention development and clinical trials testing.

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Section: Introductionmentioning

confidence: 99%

Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review

et al. 2017

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“…Patients with heart failure experience notable symptom burden, depression, and spiritual distress, perhaps more than matched cancer patients [12,13]. Caregivers report psychosocial support needs and assistance navigating the health system [14]. Clinical complexities of medical decision-making and uncertain prognosis necessitate expert communication skills, advance care planning, and for patients being considered for MCS, preparedness planning [15,16].…”

Section: Heart Of the Mattermentioning

confidence: 99%

Failing better: a new paradigm of care

Groninger

2017

Heart Fail Rev

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“…13 In addition to providing transportation to multiple appointments, they are confronted with the stresses and uncertainty associated with frequent hospital admissions. 15,45,[59][60][61][62][63] Few effective interventions to support family caregivers of patients with heart failure have been reported. 13 Cognitive impairment associated with heart failure is one of several issues that compound family caregivers' responsibilities.…”

Section: Special Considerations In Heart Failurementioning

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

202

102

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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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Carers’ needs in advanced heart failure: A systematic narrative review

Cited by 71 publications

References 35 publications

Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review

Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review

Failing better: a new paradigm of care

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

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