title: What they say versus what we see: "hidden" distress and impaired quality of life in heart transplant recipients.
abstract: BACKGROUND
  Quality of life (QoL) studies in heart transplant recipients generally rely on quantifiable self-report questionnaires and have shown that approximately 20% of patients undergo distress and poor QoL not clearly related to medical variables.
  
  
  METHODS
  Building on existing qualitative research, we used a phenomenologically informed audiovisual method to explore the nature of "distress" in heart transplant recipients. Focused open-ended interviews were conducted in non-clinical settings with 27 medically stable heart transplant recipients (70% male, mean age 53 ± 13 years, range 18 to 72 years; mean time since transplant 4.1 ± 2.4 years). Interviews were audio/videotaped and transcribed verbatim. A qualitative software program (NVIVO8) was used to code interview transcripts and videotaped bodily gestures and "expressive artifacts" as well as vocal tone and volume.
  
  
  RESULTS
  Distress was displayed by 88% of patients during the interview, and 52% displayed a profound disjunct between the words they used to describe their quality of life (e.g., "wonderful") and their embodied expressions of the same (e.g., protective body posturing, distressed facial expression). Most also expressed significant distress when discussing issues such as the donor and their "gift of life," as well as a disrupted sense of bodily integrity and identity that they felt could only be appreciated by fellow heart recipients.
  
  
  CONCLUSIONS
  Increased awareness of this distress and disruption related to bodily integrity and identity after heart transplant may allow transplant professionals and researchers to see beyond "words" to more effectively reduce distress and improve quality of life.
authors.affiliation: Cardiac Transplant Program, University Health Network, Toronto, Ontario, Canada. heather.ross@uhn.on.ca
authors.forename: Heather
authors.initials: H
authors.lastname: Ross
authors.forename: Susan
authors.initials: S
authors.lastname: Abbey
authors.forename: Enza
authors.initials: E
authors.lastname: De Luca
authors.forename: Oliver
authors.initials: O
authors.lastname: Mauthner
authors.forename: Patricia
authors.initials: P
authors.lastname: McKeever
authors.forename: Margrit
authors.initials: M
authors.lastname: Shildrick
authors.forename: Jennifer
authors.initials: J
authors.lastname: Poole
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D003142:Communication; D003430:Cross-Sectional Studies; D005260:Female; D016027:Heart Transplantation / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D009633:Nonverbal Communication; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D012649:Self Concept; D013315:Stress, Psychological; D013637:Tape Recording; D014743:Videotape Recording; D055815:Young Adult