liu.seSearch for publications in DiVA
Change search
ReferencesLink to record
Permanent link

Direct link
What they say versus what we see: 'Hidden' distress and impaired quality of life in heart transplant recipients
University Health Network, Toronto.
University Health Network, Toronto.
University Health Network, Toronto.
University Health Network, Toronto.
Show others and affiliations
2010 (English)In: The Journal of Heart and Lung Transplantation, ISSN 1053-2498, Vol. 29, no 10, 1142-1149 p.Article in journal (Refereed) Published
Abstract [en]


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.


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.


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.


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.

Place, publisher, year, edition, pages
Elsevier, 2010. Vol. 29, no 10, 1142-1149 p.
National Category
Other Health Sciences
URN: urn:nbn:se:liu:diva-81691DOI: 10.1016/j.healun.2010.05.009PubMedID: 20580266OAI: diva2:555688
Available from: 2012-09-21 Created: 2012-09-20 Last updated: 2014-02-07

Open Access in DiVA

No full text

Other links

Publisher's full textPubMed

Search in DiVA

By author/editor
Shildrick, Margrit
In the same journal
The Journal of Heart and Lung Transplantation
Other Health Sciences

Search outside of DiVA

GoogleGoogle Scholar
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

Altmetric score

Total: 44 hits
ReferencesLink to record
Permanent link

Direct link