title: Giving voice to patients' and family caregivers' needs in chronic heart failure: implications for palliative care programs.
abstract: BACKGROUND
  The American College of Cardiology Foundation/American Heart Association (ACC/AHA) Guidelines for the Management of Heart Failure recommend palliative care in the context of Stage D HF or at the end of life. Previous studies related to heart failure (HF) palliative care provide useful information about patients' experiences, but they do not provide concrete guidance for what palliative care needs are most important and how a palliative care program should be structured.
  
  
  OBJECTIVE
  Describe HF patients' and their family caregivers' major concerns and needs. Explore whether, how, and when palliative care would be useful to them.
  
  
  METHODS
  Qualitative study using in-depth interviews of 33 adult outpatients with symptomatic HF identified using purposive sampling and 20 of their family caregivers.
  
  
  METHODS
  Interviews were transcribed verbatim and analyzed using the constant comparative method.
  
  
  RESULTS
  Overall, patients and caregivers desired early support adjusting to the limitations and future course of illness, relief of a number of diverse symptoms, and the involvement of family caregivers using a team approach. A diverse group of participants desired these elements of palliative care early in illness, concurrent with their disease-specific care, coordinated by a provider who understood their heart condition and knew them well. Some diverging needs and preferences were found based on health status and age.
  
  
  CONCLUSIONS
  HF patients and their family caregivers supported early integration of palliative care services, particularly psychosocial support and symptom control, using a collaborative team approach. Future research should test the feasibility and effectiveness of integrating such a program into routine HF care.
authors: Research and Genetics Sections, Department of Veterans Affairs Medical Center, Denver, Colorado, USA. david.bekelman@va.gov
authors: David B
authors: DB
authors: Bekelman
authors: Carolyn T
authors: CT
authors: Nowels
authors: Jessica H
authors: JH
authors: Retrum
authors: Larry A
authors: LA
authors: Allen
authors: Simon
authors: S
authors: Shakar
authors: Evelyn
authors: E
authors: Hutt
authors: Theresa
authors: T
authors: Heyborne
authors: Deborah S
authors: DS
authors: Main
authors: Jean S
authors: JS
authors: Kutner
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D002908:Chronic Disease; D003120:Colorado; D015897:Comorbidity; D005260:Female; D006333:Heart Failure / Q000503:physiopathology / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010166:Palliative Care / Q000379:methods* / Q000592:standards; D036301:Qualitative Research; D018434:Sickness Impact Profile; D012944:Social Support