The Experiences of Parents and Significant Caregiver(s) whose Child Received an Organ from a Living Anonymous Liver Donor

Co-Principal Investigators: S. J. Anthony, E. Ghent; Co-Investigators: M. DeAngelis, A. Fecteau, D. Grant, V. Ng

The anonymous donation of an organ is a substantial gift on behalf of the donor, and as transplant teams working in both adult and paediatric centers we strive to balance the rights of both donors and paediatric recipients in anonymous organ donation.  This is an exploratory study addressing the experiences of parents of paediatric liver transplant recipients who received an organ from an anonymous living donor.  This study will address a significant gap in clinical research and will ultimately provide an evidence base from which developing strategies focusing on enhancing the care provided to this unique clinical paediatric population can be developed.

Background: Anonymous live donor liver transplantation has been considered as a strategy to deal with the shortage of organs for transplantation. Living Anonymous Donors (LADs), also commonly referred to as altruistic strangers and non-directed donors, are individuals who would consider donating an organ, while alive, to a stranger. This exploratory study captured the ‘lived experiences’ of parents of paediatric liver transplant recipients who received an organ from a LAD.

Methods: The theoretical framework of phenomenology guided data collection and analysis in this qualitative study. Semi-structured interviews were audio-recorded, transcribed verbatim and subject to qualitative content analysis using N-Vivo. Themes were generated through an inductive process of constant comparison.

Results: Nine interviews were conducted with 10 participants; nine parents (five mothers and four fathers) and one grandparent. Data analysis yielded themes reflecting notions of temporality associated with their transplant journey. Pre-transplant experiences were characterized by feelings of helplessness and emotional turbulence – “it was the hardest time in my life”. Learning of the availability of a LAD prompted shock and surprise – “It just blew my mind. I still can’t get over that someone would do that”. There was no hesitation in accepting the donation – “there was no wavering or passing by this opportunity”. Post-transplant experiences were characterized by changes in perspectives – “there’s a goodness in people” and varied levels of connectedness to the donor marked by gratitude and concern for their future well-being. Participants hinted at altering, and often conflicting, notions of relief and indebtedness that LAD provided.

Conclusions: Findings illuminate paediatric liver transplantation to be a pervasive experience, with consequent impact on the psychosocial functioning of families. Anonymous donation in liver transplantation is perceived as a viable and sometimes preferable option associated with minimal risk. Transplant centres should consider living anonymous donation as a potential strategy to increase the donor pool.

Funded by: Investigator funding