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What they say versus what we see: “Hidden” distress and impaired quality of life in heart transplant recipients

https://doi.org/10.1016/j.healun.2010.05.009Get rights and content

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.

Section snippets

Design

A descriptive, exploratory, cross-sectional qualitative design using digital audio- and videotaping of interviews with heart transplant recipients was employed. The study was approved by the research ethics board of the University Health Network. Each patient gave written, informed consent prior to participation. The study took place in a tertiary-care academic health science center heart transplant program.

Participants

Consecutive potential participants attending the post-transplant ambulatory follow-up

Results

The majority of the patients were male (70%), aged 53 ± 13 (mean ± SD) years (age range 18 to 72 years), and at a time since transplant of 4.1 ± 2.4 (mean ± SD) years. This is consistent with the demographic characteristics of a typical transplant program.1 Twenty-five patients completed the interview and none declined to answer any questions or asked to erase interview segments. The average length of interview was 74 minutes, ranging from 29 to 113 minutes. The study population was comparable

Discussion

Distress was much more common in this sample than the self-report questionnaire-based literature suggests. Eighty-eight percent of participants clearly voiced and/or demonstrated distress during a focused, conversational interview. Verbal expressions of distress were frequent, transient and thought to be in keeping or clinically appropriate to the discussion content, especially surrounding issues of the donor, the donor family and the gift of life. However, 52% of patients demonstrated

Disclosure statement

The authors thank Stella Kozuszko.

This project received peer-reviewed funding from the University Health Network MultiOrgan Transplant Academic Enrichment Fund. This funding organization played no role in any aspect of the research study. This grant supported one half-time master's-prepared advance practice nurse to work in the capacity of a research associate, as well as the costs of audiovisual equipment, transcriptionists, software programs and patient travel reimbursements.

The authors have

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