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

Abstract

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.

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

“…Responsibilities of caregiving are also varied, ranging from helping with household tasks or self-care activities to handling coordination of multiple medical appointments and complex medical regimens that were once delivered only by licensed healthcare personnel in a hospital or other settings. [10][11][12][13] Often, informal caregivers must undertake these activities without needed information and training. 12 Although some report positive aspects of this role, caregiving responsibilities are also associated with distressing physical, emotional, and economic effects that strain health, financial security, and well-being.…”

“…They monitor and support complex medical regimens, dietary restrictions, medications, symptom assessment/management, psychological health, and quality of life. 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.…”

“…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. 64 Although not studied specifically in patients with heart failure, a study has shown that Alzheimer disease and related dementias increase costs through effects on the management of comorbid illnesses, which is of particular relevance for heart failure given its self-management requirements.…”

“…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.…”

“…104,105 These burdens also affect caregiver quality of life. 13,27,87,102,[106][107][108] However, patients and caregivers with heart failure access palliative services far less often than patients with cancer. 105,109 Even in cases when patients with heart failure are referred for palliative care, consultations are initiated only very late in the care trajectory.…”