Quality of life and organ transplantation: patient, family, and health professional perspectives on a second chance at life.
Creators: name: Denny, Bianca
Publisher: name: RMIT University
Year: 2024

description: Organ transplantation has the potential to extend the life expectancy of individuals experiencing end-stage organ failure. First pioneered in the 1960s, long-term survival after organ transplantation is now the norm rather than the exception. As such, quality of life (QOL) has become a widely accepted criterion by which to measure the success of organ transplantation. <br><br>Quality of life refers to an individual’s subjective experience of functioning. Extensive research indicates that transplantation is associated with QOL benefits, with transplant recipients enjoying better QOL than transplant candidates. However, several conceptual and empirical aspects of QOL have not received adequate attention. First, no previous research has attempted to explain ubiquitous QOL findings from a theoretical perspective. Second, health professionals’ perceptions of QOL issues have not been considered. Last, scant attention has been paid to young patients’ families and the home environment in the context of QOL. <br><br>The present thesis is comprised of three studies, which together present a holistic exploration of the QOL of organ transplant patients. Study 1 explored the QOL of organ transplant patients using the theoretical perspective of crisis theory to investigate the relationship between stress, coping, and QOL. A total of 226 participants representing non-transplant individuals, transplant candidates, and transplant recipients participated in the study, providing insights into the unique experiences of transplant patients and enabling comparisons of each group’s QOL. <br><br>Health professionals’ perspectives on transplant patients’ QOL issues was investigated in Study 2. This exploratory study examined QOL from the perspective of professionals who work with transplant patients, and sought to investigate the dissemination of copious amounts of QOL research, information, and data to clinical practice. The views of 41 health professionals were explored in relation to attitudes toward QOL issues, reported willingness to use QOL instruments and information, and actual use of QOL information in clinical practice. Results revealed inconsistencies between attitudes, willingness, and behaviour associated with QOL. Several suggestions are made to increase the use of QOL information in clinical practice.<br><br>The QOL experiences of 32 pediatric liver transplant patients were investigated in Study 3. Together with comparing the QOL of young transplant patients with non-transplant children, the study investigated the way in which families adjust to accommodate children following liver transplantation. The relationship between family functioning and QOL was also explored, with results showing an association between decreased QOL and increased adjustments to family routines. The finding that transplant families make more adjustments to routines to accommodate their children in comparison to other families informed several recommendations to ease the burden on transplant families and, in turn, enrich the QOL of young transplant patients. <br><br>Conclusions, strengths and limitations, and suggestions for future research are discussed are discussed in the context of these findings. Theoretical implications of the findings are presented, together with suggestions for practical applications to optimise the QOL of transplant patients. The synthesis of findings indicates a need for research to move beyond assessing QOL solely from patients’ perspective, thus enabling all patients to enjoy full QOL benefits afforded by transplantation.<br>