Organ donation agency: A discourse analysis of correspondence between donor and organ recipient families

Abstract

Studies about the psychosocial issues concerning organ donation and transplantation tend to focus on the experiences of donor or recipient families. Little is known about the part played by correspondence exchanged between these two groups; in particular how they perceive the agency of organ donation. This is the first analysis to address the representation of the act of donation from the viewpoint of both donor and recipient families through interrogation of archived correspondence data, using linguistic techniques. The data was drawn from a collection of letters, from four USA organ procurement organisations, exchanged between donor and transplant recipient families. Donor families consistently linguistically ascribed agency and accountability for donation to the person who died, the donor. For the recipient families, on the other hand, the 'giver' was mainly implied, ambiguous or ascribed to the donor family.

An exploration of the relationship between families of deceased organ donors and transplant recipients: A systematic review and qualitative synthesis

“…Such needs appear to motivate their interest in the recipient, with the hope that their decision will be recognised, valued and not forgotten (Galasiński and Sque, 2016; Gideon and Taylor, 1981; Morton and Leonard, 1979; Northam, 2015; Painter et al, 1995; Pittman, 1985; Sque and Payne, 1996).…”

“…This appears to facilitate a sense of the unity between the family and the donor. Ascribing agency to the donor makes sense if the families’ descriptions are taken as advancing the narrative and biography of the deceased (Galasiński and Sque, 2016).…”

“…They described the need to look after the organ to honour the intentions of the donor and their family (Goetzmann et al, 2008) and reported feeling a blend of gratitude and guilt (Schweda and Wohlke, 2013). Donor families are more likely to refer to organ donation as an act of the donor (especially when the donor had registered their preferences before their death) and associate the donation with the donor's personality and what he or she would have wanted (Bartucci and Seller, 1988) while transplant recipients tend to focus on the donor family's decision to offer donation when speaking or writing about the event (Galasiński and Sque, 2016).…”

“…Although Christopherson and Lunde (1971) reported that over time families showed less interest in recipients and focused on their own adjustment, Galasiński and Sque (2016) have argued that the family's decision affects the rest of their lives. For those who choose to donate, there is often a continuing desire to know more about the organ recipients (Lewino et al, 1996), and during the 1990s, there was an increase in requests from donor families for direct contact (Clayville, 1999).…”

Assembling organ donation: situating organ donation in hospital practice

“…In essence, the shared focus is on cultural and social understandings of donation through an interpretative approach that explores meanings, emotional experiences, novel kinships and conceptualisations of the body and death based on notions of personhood and individuality (Dimond et al . 2019, Galasinski and Sque 2016,, Haddow, 2005, Pfaller et al . 2018, Sanner 2001, Shaw 2010, 2015, Siminoff 2004, Sque et al .…”