Caregivers' Contributions to Heart Failure Self-care

Abstract

Background A previous systematic review reporting the contributions of informal, unpaid caregivers to patient heart failure (HF) self-care requires updating to better inform research, practice, and policy. Objective The aim of this study was to provide an updated review answering the questions: (1) What specific activities do informal caregivers of adults with HF take part in related to HF self-care? (2) Have the activities that informal caregivers of adults with HF take part in related to HF self-care changed over time? (3) What are the gaps in the science? Methods This review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PubMed, CINAHL, EMBASE, and Cochrane CENTRAL databases were searched. Eligible studies involved an informal, unpaid caregiver of an adult with HF as a study variable or participant. Caregiving activities were benchmarked using the theory of self-care in chronic illness. Results Two thousand one hundred fifty-four research reports were identified, of which 64 met criteria. Caregivers' contributions occurred in self-care maintenance (91%), monitoring (54%), and management (46%). Activities performed directly on or to the patient were reported more frequently than activities performed for the patient. Change over time involved the 3 domains differentially. Gaps include ambiguous self-care activity descriptions, inadequate caregiving time quantification, and underrepresented self-care monitoring, supportive, and communication activities. Conclusions Newly identified caregiver-reported activities support updating the theory of self-care in chronic illness to include activities currently considered ancillary to HF self-care. Identified gaps highlight the need to define specific caregiving activities, determine task difficulty and burden, and identify caregiver self-care strategy and education needs. Exposing the hidden work of caregiving is essential to inform policy and practice.

Advances in the Science of Heart Failure Self-care

“…This caregiver theme-begun by Graven et al 12 and addressed by Locatelli et al 16 -is expanded upon and refined in the excellent systematic review from Buck and colleagues. 17 In an update of their previous systematic review published in 2015, 18 64 new articles were synthesized to (1) describe the specific self-care activities in which caregivers participate, (2) determine whether the activities have changed over time, and (3) identify gaps in the science. In identifying specific activities in which caregivers take part, 91% of the studies addressed self-care maintenance, 55% addressed self-care monitoring, and 47% addressed self-care management.…”