Anonymous living liver donor perspectives on the role of family in their donation experience

Abstract

Anonymous living organ donation is an understudied but rapidly expanding sector in organ transplantation, in which donors choose to donate anonymously to a recipient in need. The family members and close support network of living donors often play a crucial role in the donation process, and their influence likely has a large impact on the decision to donate as well as the donor's physical and psychosocial state. However, there is limited data examining the impact donor families have on the anonymous donor, and in turn, the impact donation has on donors’ families. To assess this, we analyzed a semi‐structured qualitative interview on living donor experiences with 26 anonymous living liver donors for common themes concerning donor families. Responses surrounding donor families were grouped into three major categories: (1) family reactions to donation, ranging from (a) pride/support, (b) fear/worry, and (c) jealousy/anger; (2) the impact of donation on donor‐family relationships, including (a) positive impacts, (b) negative impacts, (c) a positive ripple effect; (3) gaps in institutional support for donor families. This study provides unique information on anonymous living liver donor perceptions related to their families and will help improve existing programs to accommodate donor family needs and cater to donor relationships.

A qualitative systematic review of anonymous/unspecified living kidney and liver donors’ perspectives

“…in the United Kingdom [20][21][22], the United States [23][24][25], Canada [26][27][28], New Zealand [29], the Netherlands [30], and Sweden [31]. In total, there were 163 unspecified living kidney donors and 26 living liver donors, of whom 129 kidney donors and all 26 liver donors completed donation at time of study.…”

“…The dominant reaction of family and friends was disapproval or active opposition and donors were largely perceived as being either 'mad' or 'brave' which resulted in feelings of frustration and embarrassment [20-23, 26, 27]. Donors reported that their families were worried and feared for the donor's life and safety [20,27]. Conversely, some stated that their families were supportive and emphasized the importance of emotional support from their loved ones during the donation process [22,[26][27][28].…”

“…Donors reported that their families were worried and feared for the donor's life and safety [20,27]. Conversely, some stated that their families were supportive and emphasized the importance of emotional support from their loved ones during the donation process [22,[26][27][28]. Participants were also worried that their motives for donation would be misinterpreted by others as pathological or self-serving [20,26].…”

“…Some were curious about the surgical outcomes and health of their recipient [26,29]. However, regardless of outcomes, participants stated that the donation experience allowed them to forge closer emotional connections with recipients, family members, and with the community at large [20,[26][27][28][29]. Participants who received appreciation from their recipient felt a deep emotional resonance [20,29] while donors who did not hear back from recipients expressed disappointment and felt a weaker sense of emotional attachment [20][21][22]30].…”