Facing a New Face: An Interpretative Phenomenological Analysis of the Experiences of a Blind Face Transplant Patient and His Partner

Abstract

Increasing evidence points to good functional, aesthetic, and psychosocial outcomes after face transplantation. However, research investigating how patients and their families subjectively experience the transplantation process is lacking thus far. This study aims to investigate the personal experiences of a blind face transplant patient and his partner. In-depth interviews exploring different experiences were conducted with both partners separately 20 months after face transplantation. The interviews were analyzed using interpretative phenomenological analysis. Seven themes were identified in both interviews: coping with the facial trauma, motivation for the face transplantation, outcomes of the face transplantation, acceptance of the new face, gratitude toward the donor family, relation to the medical team, and dealing with the media. Two further themes were only mentioned by the patient (coping with complications and coping with blindness) and one theme only by the partner (loss of choices). The results of this study increase our understanding of the transplantation process as experienced by a face transplant recipient and his partner. They may help to better inform professionals to optimize transplantation procedures or supportive interventions.

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

“…Although the identity of both donor and recipient are legally protected, and this was respected by both the donor and recipient families in our case, donor families may be confronted with the recipient as he or she can make him or herself known through media, as seen in previous cases. 14,24 Transplant teams should therefore be aware of this unique feature of perceptibility in facial donation and help to inform and support donor family members to deal with its different and (un)foreseen aspects.…”

“…Since the first successful case in France in 2005, more than 45 cases in 10 countries have been reported worldwide, with 1 successfully executed facial transplantation in Belgium in 2012. [11][12][13][14] Unlike other organ transplantations, facial allograft donation is explicitly visible and concerns an important identity characteristic, making the donation process different and possibly more difficult and complex. 11,15,16 The objective of the current study is to explore the experiences of the donor's family members during the process of the facial donation, from the donor's hospital admission until the funeral.…”

“…Facial allograft transplantation is currently a viable treatment option to restore facial appearance and function in a single procedure after severe injury. Since the first successful case in France in 2005, more than 45 cases in 10 countries have been reported worldwide, with 1 successfully executed facial transplantation in Belgium in 2012 11–14. Unlike other organ transplantations, facial allograft donation is explicitly visible and concerns an important identity characteristic, making the donation process different and possibly more difficult and complex 11,15,16…”

Facial Transplantation: Principles and Evolving Concepts

“…2 Facial transplantation in blind patients remains controversial, with opponents suggesting that recipients will not be able to perceive the outcomes of the procedure or allograft changes that may indicate immunologic rejection, whereas supporters argue that it is unethical to exclude blind patients, especially in light of favorable reported aesthetic and functional outcomes. [11][12][13][14][15] Immunologic risk factors also need to be considered when weighing the risks and benefits of the procedure in potential candidates. This is particularly relevant for patients with a history of burns and extensive transfusions that can lead to immunosensitization, human immunodeficiency syndrome infection, presence of donor-specific antibodies, and other immunomodulatory conditions that can complicate finding matching donors and postoperative recovery.…”