The experiences of parents and caregiver(s) whose child received an organ from a living anonymous liver donor

• Published in: Clinical transplantation Vol. 33; no. 10; pp. e13667 - n/a
• Main Authors: Ghent, Emily, Robertson, Taylor, Young, Katarina, DeAngelis, Maria, Fecteau, Annie, Grant, David, Ng, Vicky, Anthony, Samantha J.
• Format: Journal Article
• Language: English
• Published: Denmark 01.10.2019
• Subjects: caregiver; liver transplant; living anonymous donor; organ donation; pediatric; qualitative; caregiver; qualitative; liver transplant; organ donation; living anonymous donor; pediatric
• DOI: 10.1111/ctr.13667
• ISSN: 0902-0063

Background Anonymous living donor transplantation is a potential strategy to address the shortage of available organs for transplant. A living anonymous donor (LAD) is a donor with no biological connection and whose identity is unknown to the recipient. This study captured the lived experiences of pediatric liver transplant recipient families whose child received an organ from a LAD. Methods Qualitative data collection and analysis were guided by a theoretical framework of phenomenology. Data analysis highlighted themes through an inductive process of reviewing transcript paragraphs to code for significant statements that represented key concepts and captured depth of experience. Results A total of nine interviews were conducted with 10 participants. Data analysis yielded themes of emotional turbulence through their transplant journey. Pre‐transplant experiences were characterized by feelings of helplessness and desperation. Receiving a LAD transplant prompted shock, relief, and acceptance of the donation. Post‐transplant experiences were characterized by altered life‐perspectives and varied levels of connectedness to the donor, marked by gratitude and concern for donor well‐being. Conclusion Anonymous donation in liver transplantation is perceived by recipient families as a remarkable gift and a viable donor option. Our preliminary findings can be used to inform strategy development regarding future delivery of care.