The liminal experience of awaiting for a cadaveric kidney donation: “I would not wish it on even my enemy!”

Abstract

This study aims to explore the concept of liminality in the lives of chronic kidney disease (CKD) patients in Turkiye who are undergoing dialysis while awaiting kidney transplants. The research focuses on how patients experience this transitional state, being between life stages, and how they cope with the uncertainty of their condition while aspiring for a transplant. The research involved in-depth, semi-structured interviews and participant observations of 34 dialysis patients who had been registered on the national organ waiting list for over five years. The research was conducted between August 16, 2022, and November 11, 2022. The principal findings reveal that these patients experience profound uncertainty and hope, viewing potential transplants as a "second birthday" and symbolic rebirth. The study also highlights significant cultural and familial dynamics influencing the organ donation process, with many patients facing disappointment when relatives are unwilling or unable to donate. Additionally, patients report various physical and psychological challenges, including social isolation, strict dietary restrictions, and the emotional toll of dependence on hemodialysis. The significant conclusions indicate that the anticipation of receiving a cadaveric organ donation provides both hope and anxiety, motivating patients to adhere strictly to medical advice while coping with the emotional burden of uncertainty. The research underscores the complex interplay between cultural beliefs, medical practices, and the lived experiences of CKD patients. This paper contributes to knowledge by comprehensively understanding the cultural and emotional dimensions of the dialysis experience in Turkey. It offers valuable insights for healthcare providers and policymakers to improve patient care and support systems.