title: Caregivers' contributions to heart failure self-care: a systematic review.
abstract: OBJECTIVE
  The purpose of this study was to conduct a systematic review answering the following questions: (a) what specific activities do caregivers (CGs) contribute to patients' self-care in heart failure (HF)?; and (b) how mature (or developed) is the science of the CG contribution to self-care?
  
  
  METHODS
  MEDLINE, EMBASE, Cumulative Index of Nursing and Allied Health Literature (CINAHL), the Cochrane Library and ClinicalTrials.gov were searched using the terms heart failure and caregiv* as well as the keywords 'careers', 'family members' and 'lay persons' for studies published between 1948 and September 2012. Inclusion criteria for studies were: informal CGs of adult HF patients-either as dependent/independent variable in quantitative studies or participant in qualitative studies; English language. Exclusion criteria for studies were: formal CGs; pediatric, adult congenital, or devices or transplant CGs; mixed diagnosis; non-empiric reports or reports publishing duplicate results. Each study was abstracted and confirmed by two authors. After CG activities were identified and theoretically categorized, an analysis across studies was conducted.
  
  
  RESULTS
  Forty papers were reviewed from a pool of 283 papers. CGs contribute substantively to HF patients' self-care characterized from concrete (weighing the patient) to interpersonal (providing understanding). Only two studies attempted to quantify the impact of CGs' activities on patients' self-care reporting a positive impact. Our analysis provides evidence for a rapidly developing science that is based largely on observational research.
  
  
  CONCLUSIONS
  To our knowledge, this is the first systematic review to examine CGs' contributions in depth. Informal caregivers play a major role in HF self-care. Longitudinal research is needed to examine the impact of CGs' contributions on patient self-care outcomes.
authors.affiliation: School of Nursing, The Pennsylvania State University, USA hgb2@psu.edu.
authors.forename: Harleah G
authors.initials: HG
authors.lastname: Buck
authors.affiliation: McMaster University, Canada Hamilton Health Sciences, Canada.
authors.forename: Karen
authors.initials: K
authors.lastname: Harkness
authors.affiliation: School of Nursing, The Pennsylvania State University, USA.
authors.forename: Rachel
authors.initials: R
authors.lastname: Wion
authors.affiliation: School of Nursing, McMaster University, Canada Population Health Research Institute, Hamilton Health Sciences, Canada.
authors.forename: Sandra L
authors.initials: SL
authors.lastname: Carroll
authors.affiliation: Hamilton Health Sciences, Canada.
authors.forename: Tammy
authors.initials: T
authors.lastname: Cosman
authors.affiliation: School of Nursing, McMaster University, Canada.
authors.forename: Sharon
authors.initials: S
authors.lastname: Kaasalainen
authors.affiliation: College of Nursing, University of Saskatchewan, Canada.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Kryworuchko
authors.affiliation: Lawrence S Bloomberg Faculty of Nursing, University of Toronto, Canada.
authors.forename: Michael
authors.initials: M
authors.lastname: McGillion
authors.affiliation: Lawrence S Bloomberg Faculty of Nursing, University of Toronto, Canada.
authors.forename: Sheila
authors.initials: S
authors.lastname: O'Keefe-McCarthy
authors.affiliation: McMaster University, Canada.
authors.forename: Diana
authors.initials: D
authors.lastname: Sherifali
authors.affiliation: School of Nursing, McMaster University, Canada.
authors.forename: Patricia H
authors.initials: PH
authors.lastname: Strachan
authors.affiliation: McMaster University, Canada Hamilton Health Sciences, Canada.
authors.forename: Heather M
authors.initials: HM
authors.lastname: Arthur
mesh_terms: D017028:Caregivers / Q000458:organization & administration*; D002908:Chronic Disease; D005260:Female; D006333:Heart Failure / Q000175:diagnosis / Q000451:nursing*; D006801:Humans; D008134:Long-Term Care / Q000458:organization & administration; D008297:Male; D011379:Prognosis; D011786:Quality Control; D012648:Self Care / Q000379:methods*; D012720:Severity of Illness Index; D016896:Treatment Outcome
keywords: Self-care; chronic illness; self-management; symptom management