The experience of waiting for a kidney transplant: A qualitative study

Abstract

SUMMARY Background: In Australia over 1100 people are living on dialysis while waiting for a kidney transplant from a deceased donor. Worldwide there are an estimated 170,000 people who wait an average of three years before an organ becomes available. Objective: To provide an understanding of the lived experience of people waiting on dialysis for a kidney transplant from a deceased donor. Approach: A qualitative descriptive research design was used. Participants were recruited from a large metropolitan hospital. Two focus groups were conducted with six participants ranging in age from 29–63 years, with dialysis experience of 10–72 months. Data saturation was achieved and thematic analysis was used to interpret the data providing a descriptive account of the experience of waiting for a kidney transplant. Findings: Waiting for a kidney transplant takes place in the context of living on dialysis. Four main themes were identified: living on dialysis is physically and mentally demanding; living with uncertainty; altered relationship dynamics; and feelings towards the deceased donor. Conclusions: This study provides a descriptive summary of what it is like to live on dialysis while waiting for a kidney transplant from a deceased donor from the perspective of the person waiting. People are burdened by; uncertainty; the experience of the dialysis therapy; and the thought of the human cost of transplantation. These findings suggest that this cohort may benefit from strategies to relieve uncertainty such as effective communication from the treating team and peer support from the dialysis community.

Balancing everyday life—Patients’ experiences before, during and four months after kidney transplantation

“…In accordance with Meleis et al, a transition is a movement over time, which can be experienced as an ongoing long-term transition similar to the patients' situation before transplantation (Meleis et al, 2000). Our findings are similar to others, where waiting for a kidney is described as becoming a normalized part of everyday life and how hope is generated when other patients in the dialysis community receive a transplant (Burns et al, 2017). Several studies exploring the period pre-transplantation focus on education whose aim is to help the patients to be prepared for their new situation (Jones et al, 2016;Rosaasen et al, 2017).…”

“…They moved the possible future transplant into the background and focused on maintaining everyday life. Studies find that the challenge of being a wait‐listed patient includes confusion, worries and constant uncertainty (Burns et al, ; Rosaasen et al, ; Spiers & Smith, ). In our study, wait‐listed patients experienced the same challenges and were not in a mental condition to cope with education.…”

“…Experiences during this period were characterized as an uncertain and confusing time with thoughts of the deceased donor. Furthermore, hope and expectations of a future free from dialysis treatment were present (Burns, Fernandez, & Stephens, ; Chong et al, ; Croft & Maddison, ; Spiers & Smith, ; Tong et al, ). Another perspective was how waiting time was used to prepare patients for the upcoming transplantation (Jones et al, ; Rodrigue, Mandelbrot, & Pavlakis, ; Sieverdes et al, ).…”

“…Experiences during this period were characterized as an uncertain and confusing time with thoughts of the deceased donor. Furthermore, hope and expectations of a future free from dialysis treatment were present (Burns, Fernandez, & Stephens, 2017;Chong et al, 2016;Croft & Maddison, 2017;Spiers & Smith, 2016;Tong et al, 2015).…”

The experiences of living with a transplanted kidney from a deceased donor

“…Qualitative evidence illustrated the pre‐ and posttransplantation challenges experienced by transplant recipients from deceased donors. These include coping with the uncertainty of waiting for a kidney (Burns, Fernandez, & Stephens, 2017) and living with a transplanted kidney (Kerr, Soulière, & Bell, 2018; Lonargáin et al, 2017), mourning the donor family's loss (Burns et al, 2017) or handling the fact that somebody needs to die to become a donor (Spiers & Smith, 2015). Other studies investigated the recipients' QoL and showed that it increases from pre‐ to posttransplantation (Landreneau, Lee, & Landreneau, 2010; Wiederhold et al, 2011).…”