Abstract
BackgroundCaregivers may promote the uptake of science into patient care and the practice of evidence-informed medicine. The purpose of this study was to determine whether caregiver-mediated (non-clinical caregiver-delivered) interventions are effective in improving patient, caregiver, provider, or health system outcomes.MethodsWe searched the MEDLINE, Embase, PsycINFO, Cumulative Index of Nursing and Allied Health, and Scopus databases from inception to February 27, 2017. Interventions (with a comparison group) reporting on a quality improvement intervention mediated by a caregiver and directed to a patient, in all ages and patient-care settings, were selected for inclusion. A three-category framework was developed to characterize caregiver-mediated interventions: inform (e.g., provide knowledge), activate (e.g., prompt action), and collaborate (e.g., lead to interaction between caregivers and other groups [e.g., care providers]).ResultsFifty-six studies met the inclusion criteria, and 64% were randomized controlled trials (RCTs). The most commonly assessed outcomes were patient- (n = 40) and caregiver-oriented (n = 33); few health system- (n = 10) and provider-oriented (n = 2) outcomes were reported. Patient outcomes (e.g., satisfaction) were most improved by caregiver-mediated interventions that provided condition and treatment education (e.g., symptom management information) and practical condition-management support (e.g., practicing medication protocol). Caregiver outcomes (e.g., stress-related/psychiatric outcomes) were most improved by interventions that activated caregiver roles (e.g., monitoring blood glucose) and provided information related to that action (e.g., why and how to monitor). The risk of bias was generally high, and the overall quality of the evidence was low-moderate, based on Grading of Recommendations Assessment Development and Evaluation ratings.ConclusionsThere is a large body of research, including many RCTs, to support the use of caregiver-mediated interventions that inform and activate caregivers to improve patient and caregiver outcomes. Select caregiver-mediated interventions improve patient (inform-activate) and caregiver (inform-activate-collaborate) outcomes and should be considered by all researchers implementing patient- and family-oriented research.Systematic reviewPROSPERO, CRD42016052509.
Highlights
Caregivers may promote the uptake of science into patient care and the practice of evidence-informed medicine
Results of the search We screened 4273 unique abstracts and reviewed 231 full-text articles; 175 full-text articles were excluded, the most common reasons being that the intervention was not mediated by a caregiver 110/175) or that the study did not include an intervention (37/175) (Fig. 1)
There is a large and recent body of literature suggesting that complex interventions comprised of inform-activate and inform-activate-collaborate engagement strategies are associated with improved patient and caregiver outcomes
Summary
Caregivers may promote the uptake of science into patient care and the practice of evidence-informed medicine. Due to the nature of their illness and the use of invasive therapies, some patients may not be able to act as active agents of change [6]; children, and a growing number of adults with complex care needs, represent populations who require a caregiver. This presents a unique role for caregivers to be engaged in PFCC, though the evidence supporting the delivery and effectiveness of caregiver-mediated interventions is limited. Because of the growing role of patients and caregivers in care, there is an opportunity to engage and empower them to promote the uptake of science into patient care and the practice of evidence-informed medicine
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