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

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.