Master of Philosophy
School of Nursing
Burns, Tania, The experience of waiting for a kidney transplant from a deceased donor, Master of Philosophy thesis, School of Nursing, University of Wollongong, 2016. https://ro.uow.edu.au/theses/4821
There are over 1100 people waiting for a kidney transplant in Australia, with an estimated 170,000 people waiting worldwide. Most of these people do not have a living donor, so their only option is to live on dialysis while they wait for a kidney from a deceased donor to become available. In Australia people wait for an average of 2.6 years to receive a kidney from a deceased donor, a similar length of time to other developed nations around the world. Existing literature has focussed on transplant outcomes and the experience of dialysis, but there is little published research that describes what it is like for people once they have been placed on the waiting list. Therefore the aim of this research is to fill this gap in the literature and provide an understanding of the experience of waiting for a kidney transplant from a deceased donor.
The thesis includes a systematic review of the literature and a qualitative research study. Much of the existing evidence about waiting for a kidney transplant is reported incidentally in studies looking at the experience of living on dialysis. Synthesising these findings in a systematic review provided a baseline from which to conduct a qualitative study in order to produce findings that were exploratory and descriptive.
The study found that the experience of waiting for a kidney transplant took place in the context of living on dialysis. The thought of getting a kidney transplant gave people hope that they would escape from dialysis one day and return to a normal life. People lived with uncertainty about the timing of the transplant and whether or not it would be successful. Waiting for a transplant had a transformative effect on a person’s relationships, enhancing their appreciation of family members who provided them with help and support; and resulting in new friendships with other people living on dialysis from whom they could learn and inform their own experiences. It also showed a complex response to the deceased donor who they hoped for, but who they also appreciated as a person in their own right.
The findings of this study are significant because they specifically explore the experience of a significant population about which little has been published. They may be used to develop interventions or further research to better support people in this population.