Abstract
The aim of facial transplantation (FT) was to enhance quality of life (QoL) for individuals living with severe facial disfigurement. Yet QoL has proved challenging to assess, as the field lacks a unified approach for incorporating FT recipients' perspectives into meaningful QoL measures. In this study, we review FT recipients' self-reported QoL through a qualitative analysis of publicly available posttransplant interviews to identify the aspects of QoL they report as meaningful. METHODS: A conventional qualitative content analysis was conducted through a comprehensive review of publicly available interviews with FT recipients. Data sources included English language audio, video, and online print interviews from 2008 to 2019. Recipient interview data were obtained for both partial and full FT recipients located in North America through Google and YouTube searches. Audio and video interviews were transcribed, and an inductive content analysis was used to develop and apply a coding scheme to all interview transcripts. Codes were subsequently grouped into categories and interpreted into themes. RESULTS: In total, 81 interviews representing 12 North American, English-speaking face transplant recipients were collected from internet sources, of which 74 interviews remained after exclusion criteria were applied. Three themes emerged representing the dimensions of QoL emphasized by FT recipients: (1) reconstitution and re-embodiment of physical/corporeal selfhood, (2) integrity of cognitive/emotional selfhood, and (3) social selfhood and the importance of social integration. CONCLUSIONS: This study provides an insight into North American FT recipients' experiences, values, and goals and illuminates critical aspects of QoL that are meaningful to this unique patient population, which may not be fully captured by currently available assessment tools. The themes developed in this study link facets of QoL to the overall significance of embodied selfhood among FT recipients and will help inform the future development of FT-specific patient-reported QoL outcome measures.