Navigating the new, transplanted self: how recipients manage the cognitive risks of organ transplantation

Abstract

The physiological risks of organ transplantation are well documented, but more poorly understood are the sociological ways in which organ recipients redefine themselves in reaction to physiological risks and social changes accompanying transplantation. This article analyses transplantation as a procedure that is not only physiologically risky but also poses risk to the social identity of the recipient, and explores how transplant recipients cognitively navigate transplantation surgery from waiting for to recovering after a transplant. It builds on previous sociological exploration of risk as a socially constructed process mediating experiences of health and illness with a focused contribution on explaining how individuals navigate risks posed to their social identities by major biophysical transformations. This article pointedly analyses narratives of fourteen organ recipients and the four dominant phases of identity management that emerged to create what we have coined as the new 'transplanted self', indicating the varied ways the individual social self emerges in response to the social risks of transplantation. We conclude that a better understanding of the recipient experience will contribute to improved care in the transplantation field.

‘You have got a foreign body in there’: renal transplantation, unexpected mild-to-moderate distress and patients’ support needs: a qualitative study

“…This may be that patients naively perceive that by having a transplant their quality of life will improve quickly and they will return to a normal life 31. Consequently, patients are often ill-prepared and feel helpless when trying to cope with their distress 32. Evidence has shown that improving coping skills,33 education before and after transplantation,34 and active information seeking by patients can have a beneficial effect on patients’ medical and psychological problems 8 25 35.…”

“…When a patient is informed, it empowers them to take control of their condition and having control can itself lower the chances of distress 6. It is therefore important that HCPs provide and share information and discuss all possible outcomes and coping strategies at the appropriate time in the treatment pathway 3 30 32…”

Organ Transplant Recipients’ Experiences of Physical Activity: Health, Self-Care, and Transliminality

“…Indeed, Ouellette et al (2009) demonstrate that resistance and acceptance are part of this process and Aujoulat et al (2014) illustrate that recipients learn to integrate illness into their identity. This idea of emerging identity management ties closely with Cormier et al's (2017) "new transplanted self" as well as various accounts of "liminality" and "transliminality," whereby patients can feel in between the two opposing subject positions of "healthy" and "ill" (Bogue Kerr et al, 2018).…”

“…Svenaeus (2001) brings attention to this in the context of the phenomenology of health and illness not least because the physiology of the body "afflicts and sets limits to the different ways we are able to experience and interpret our being-in-the-world" (p. 87). Being astutely aware of this, our interrogation of the data was attuned to the significance of the body, as has been the case in numerous other studies taking a phenomenological approach (see Bogue Kerr et al, 2018;Cormier et al, 2017;Mauthner et al, 2015;G. M. O'Brien et al, 2014;Svenaeus, 2012).…”

Understanding and managing uncertainty in health care: revisiting and advancing sociological contributions

“…Identity management is also foregrounded in reactions to physiological risks and social changes accompanying organ transplantation (Cormier et al . 2017). For patients engaging with screening programmes, the risk experience in the absence of symptoms, becomes about measured vulnerability (Gillespie 2012).…”