[Narrative inquiries from kidney transplant patients: From the onset of the disease to the transplant]

Abstract

Introduction: In 2018, we counted 14 291 patients on the French kidney transplantation waiting list, and 3546 grafted. The law applies the presumed consent and public surveys shows a desire for information. The objective of this research was to describe transplanted patients' lives history in order to cope with this need for information.

Methods: Qualitative study, narrative inquiries, of French Auvergne-Rhône-Alpes transplanted patients' life story, between December 2016 and February 2019. Interviews were fully transcribed and analyzed by two researchers. The sampling was defined by gender, age, dialysis time and socio-professional categories. Notification to the French data protection authority was carried out.

Results: With the ninth interview, sufficient data was collected. The start of the disease could be insidious or brutal. All interviewees changed lifestyle habits. Sometimes, the dialysis made the recovery of certain autonomy possible, but had nutritional and organizational constraints. Transplantation, without complications, reduced significantly the burden of the disease and its treatment. The difficult and agonizing expectancy of the transplant was then replaced by the patients' feeling of Damocles sword due to the uncertainty around the graft's life expectancy. The dialysis burdens were replaced by the immunosuppressive side effects. The patients' dependence on the graft resonated with a moral duty towards the donor, their relatives and themselves.

Conclusion: Renal insufficiency comprises alternations of autonomy and dependence.

Keywords: Kidney transplantation; Personal narratives as topic; Qualitative research; Recherche qualitative; Récits personnels comme sujet; Transplantation rénale.