Facial Allograft Donation: An Interpretative Phenomenological Analysis of the Experiences of Family Members

Abstract

Facial allograft transplantation can be regarded as a particular and complex type of donation because of its perceptibility and the importance of the face as an identity characteristic. As research on this topic is currently lacking, the objective of this study is to explore the experiences of the family members of the donor in facial allograft donation. In-depth, semi-structured interviews were conducted separately with the donor's family members and analyzed using interpretative phenomenological analysis. Six themes were identified: (1) Contrasting facial donation to that of more commonly donated organs; (2) Consenting to facial donation; (3) Expectations towards the recipient of the facial graft; (4) Expectations and consequences of restoration of the donor's face; (5) Relationship with the medical team during the process; and (6) Media attention. The findings of our study help to better support donor families through the facial donation process and to improve facial transplantation procedures.

Discussion: Total Face Reconstruction with Flap Prefabrication and Soft-Tissue Expansion Techniques

“…Although the risk of long-term adverse effects of immunosuppression and the burden of multiple episodes of acute rejection are well documented 3,4 and have sparked ethical debate, recent studies demonstrate a shifting conversation regarding ethics in vascularized composite allotransplantation (VCA) 5 and an increasingly positive public perception surrounding the procedure. 6 Cited psychological burden by the family can be overcome by building and maintaining close relationships between providers and their patient’s psychosocial support system. Moreover, preliminary psychological outcomes assessments have demonstrated less depression, less verbal abuse, improved quality of life, improved family affective responsiveness, and better social integration in recipients, 5,7–9 which supports the importance of strong and established support systems for patients.…”