Patients’ Perspective and Utility of Self-narrative Biographies in the Kidney Transplantation Path: a Pilot Study

Waiting for a transplant correlates with trepidation, emotional distress, a sense of guilt and grief toward the deceased donor, anxiety, and even depression. Then, patients must cope with uncertainty and fear about outcomes and changes in personal identity. Aim of this study was to gather patients' perspectives on significant moments in their transplant journey. Face-to-face and semi-structured interviews were conducted with KTRs from 2020–2021 about (1) waiting-list-period; (2) impact of the transplant on their daily activity; (3) out-of-hospital routine; (4) life changes; (5) self-narrative biography utility. Participants mentioned highly emotional moments, a theme of uncertainty about the outcome emerged and most KTRs reported that sharing their own story normalizes, allows comparisons with others, and relieves the feeling of loneliness; hearing others' narratives appears as a way of gaining knowledge different from the medical standpoint. Transplant experience is characterized by a non-linear timeline different from the chronological steps foreseen by the medical procedure, overlooked as a "healing moment". Use of creative activities in health care situations can empower people and increase their well-being allowing emotional release. Due to some limitations (hyper-selected patients, monocentric experience), more research is needed to study the impact of forms of storytelling as an intervention.