Waiting for kidney transplantation from deceased donors: Experiences and support needs during the waiting time -A qualitative study

• Published in: Patient education and counseling 2022-07, Vol.105 (7), p.2422-2428
• Main Authors: Nilsson, Kristina, Westas, Mats, Andersson, Gerhard, Johansson, Peter, Lundgren, Johan
• Format: Article
• Language: English
• Subjects: Education; Educational Status; Humans; Kidney Failure, Chronic - psychology; Kidney Failure, Chronic - surgery; Kidney transplantation; Kidney Transplantation - psychology; Medicin och hälsovetenskap; Needs; Qualitative Research; Support; Waiting list; Waiting Lists
• ISSN: 0738-3991; 1873-5134; 1873-5134
• DOI: 10.1016/j.pec.2022.02.016

The study aimed to explore and describe patients’ experiences of the transplantation process and the support they had received during the waiting time. Semi-structured interviews were conducted with 14 patients currently waiting for kidney transplantation from deceased donors (n = 7) or recently having received kidney transplantation (n = 7). Interviews were transcribed, anonymized and analysed inductively using thematic analysis. Two themes and seven sub-themes were identified. The first theme, “Swaying between hope and despair” describes patients’ perceptions of waiting for transplantation as a struggle, their expectations for life after the upcoming transplantation and experienced disappointments. The second theme, “Making your way through the waiting time”, describes support, strategies and behaviours used to manage the waiting time. Patients described life while waiting for kidney transplantation as challenging, involving unexpected events, not understanding the transplantation process and having unrealistic expectations on life after transplantation. They also described support, strategies and behaviours used, some of which led to unwanted consequences. Patients waiting for kidney transplantation from deceased donors need continuous and easily available education, practical and emotional support to manage the waiting time. Transplantation specific education is also needed to facilitate preparation for transplantation and adjustment to life after transplantation. •Waiting for kidney transplantation is challenging and involves unexpected events.•Some strategies used by kidney transplant candidates lead to unwanted consequences.•Support is needed to manage difficulties arising during the transplantation process.•Kidney transplant candidates need educational, practical, and psychosocial support.