Living in one's own world, while life goes on: Patients' experiences prior to a kidney transplantation with a living donor

Aims and objectives: To investigate patients' existential experiences in everyday life prior to a kidney transplantation with a living donor. Background: Kidney transplantation is a well-established treatment for patients with end-stage kidney disease. The prevalence of patients living with end-stage renal disease is increasing. Simultaneously, kidney transplantations with a living donor are increasing. However, patients experience challenging existential aspects concerning kidney transplantation. Design: A qualitative study with a hermeneutic-phenomenological approach inspired by Ricoeur was chosen. Methods: Fourteen interviews with patients living with end-stage kidney disease were conducted 7–14 days before a planned kidney transplantation with a living donor. Analysis and interpretation were based on Ricoeur's theory of interpretation. We applied the Criteria for Reporting Qualitative Research (see Appendix S1). Results: Four themes were identified: living with subjective feelings of illness while objectifying the body; living in one's own world while the world outside goes on; feeling grateful while being concerned for the donor; and hoping for the best, while preparing for the worst. Conclusion: Patients' existential challenges are multifaceted. Patients articulate their kidney function in numeric terms, trying to make the invisible visible for themselves and others. Sustaining normality becomes important for patients, and the waiting time from donor evaluation to transplantation triggers excitement, hope and frustration. Relevance to clinical practice: The results increase insights into individuals' existential experiences in their everyday lives. Hereby, the results articulate the need for support from health professionals prior to a kidney transplantation.