title: Symptoms and fear in heart failure patients approaching end of life: a mixed methods study.
abstract: OBJECTIVE
  The purpose of this study was to consider how fear and symptom experience are perceived in patients with heart failure at the end of life.
  
  
  BACKGROUND
  Heart failure is a burdensome condition and mortality rates are high globally. There is substantive literature describing suffering and unmet needs but description of the experience of fear and the relationship with symptom burden is limited.
  
  
  METHODS
  A convergent mixed methods design was used.
  
  
  METHODS
  Data from the McGill Quality of Life Questionnaire (n = 55) were compared to data from in-depth interviews (n = 5).
  
  
  RESULTS
  Patients denied fear when asked directly, but frequently referred to moments of being afraid when they were experiencing symptoms. In addition, patients reported few troublesome symptoms on the survey, but mentioned many more symptoms during interviews.
  
  
  CONCLUSIONS
  These data not only identify the relationship between psychological issues and symptom experience but also elucidate the benefit of a mixed method approach in describing such experiences from the perspective of the patient. Future research should examine relationships between and among symptom experience, fear and other psychological constructs across the illness trajectory.
  
  
  CONCLUSIONS
  Conversations about the interaction of symptom burden and fear can lead to both a more robust assessment of symptoms and lead to patient centred interventions.
authors.affiliation: School of Nursing, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Martha
authors.identifier: http://orcid.org/0000-0003-1824-1542
authors.initials: M
authors.lastname: Abshire
authors.affiliation: School of Nursing, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Jiayun
authors.initials: J
authors.lastname: Xu
authors.affiliation: School of Nursing, Johns Hopkins University, Baltimore, MD, USA.|School of Medicine, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Cheryl
authors.initials: C
authors.lastname: Dennison Himmelfarb
authors.affiliation: School of Nursing, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Patricia
authors.initials: P
authors.lastname: Davidson
authors.affiliation: School of Medicine, University of Chicago, Chicago, IL, USA.|Divinity School, University of Chicago, Chicago, IL, USA.
authors.forename: Daniel
authors.initials: D
authors.lastname: Sulmasy
authors.affiliation: School of Nursing, Johns Hopkins University, Baltimore, MD, USA.|School of Public Health, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Joan
authors.initials: J
authors.lastname: Kub
authors.affiliation: School of Medicine, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Mark
authors.initials: M
authors.lastname: Hughes
authors.affiliation: School of Nursing, Johns Hopkins University, Baltimore, MD, USA.|Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Marie
authors.initials: M
authors.lastname: Nolan
mesh_terms: D000328:Adult; D000368:Aged; D005239:Fear; D005260:Female; D006333:Heart Failure / Q000451:nursing / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009736:Nursing Process; D011594:Psychometrics; D011788:Quality of Life; D011795:Surveys and Questionnaires; D013727:Terminal Care
keywords: end of life; fear; heart failure; mixed methods; symptoms