Heart Failure Caregivers as Coproviders of Palliative Care: A Systematic Review of Caregivers’ Engagement in Symptom Management (FR420-A)

Abstract

1.Describe and discuss the heart failure caregiving literature related to symptom management.2.Identify gaps in what is known about informal caregivers’ engagement in heart failure symptom management. Heart failure (HF) is a chronic condition with morbidity and mortality rates higher than most cancers. Approximately 70% of the six million Americans with HF have an informal, unpaid caregiver. Relatively little is known about HF caregivers’ engagement, as a palliative care coprovider with clinicians, in symptom management. To conduct a rigorous systematic review of informal caregivers’ engagement in HF symptom management. Using PRISMA criteria, a search was conducted using the terms heart failure and caregivers in the MEDLINE®, EMBASE, CINAHL®, Cochrane Library, and ClinicalTrials.gov databases for studies published between 1948-2012. Inclusion criteria: informal caregivers of adult HF patients published in English. Exclusion criteria: Pediatric, device, or transplant caregivers and non-empiric studies. The Theory of Self-Care of Chronic Illness provided the theoretical framework for the determination of what constituted engagement. Each study was abstracted and confirmed by two members into a theoretically derived matrix using prespecified criteria. From a pool of 278 unique papers, 40 papers met criteria. These studies involved 1318 patients and 1625 caregivers in eight different countries. More is known about the caregiver’s role in symptom management in following a plan of care (n=14 studies), health surveillance (n=14), treatment implementation (n=12), and maintaining a healthy lifestyle (n=7) than in symptom recognition (n=1), symptom evaluation (n=2), or treatment evaluation (n=2). Symptom management is a major component of HF palliative care. Although there is empiric and theoretical support describing the important daily contributions that caregivers make, there are significant gaps in what is known about caregivers’ engagement as palliative care coproviders in HF symptom management.