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The lived experience of organ transplantation: Miracle or medicine?

O'Brien, Geraldine (2014) The lived experience of organ transplantation: Miracle or medicine? PhD thesis, Murdoch University.

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Transplantation has revolutionised the management of end stage organ disease, and is currently the treatment of choice in many developed western nations. The success of this treatment has led to an increasing demand for it, and concomitant increase in the demand for transplantable organs. Organ scarcity is widely acknowledged as the dominant, and most persistent, problem faced in contemporary transplantation. Scarcity of available organs undergirds the gift-of-life metaphor, upon which all transplantation discourses have been founded (Fox & Swazey, 2002). Gift-of-life discourse is routinely utilised in a bid to increase donation rates and enforce a ‘construction of care’ in recognition of, and reciprocity for, the scarce and precious gift received (Sothern & Dickinson, 2011).

Shaw (2012) argued that gift-of-life rhetoric is prescriptive; directing, in large part, what can be felt and said in the context of transplantation. This can be problematic, as although transplantation undoubtedly extends life, it does not do so without incurring physiological and psychological cost. The immunosuppression regimens that recipients must adhere to and the psychosocial outcomes of transplantation mean that, in effect, transplantation may represent the exchange of one set of hardships for another (Sharp, 2006). Recipients often exist in a state of ‘persistent liminality’, caught between the worlds of the healthy and the sick (Crowley-Matoka, 2005).

This research was undertaken to explore the lived experience of transplantation. I was particularly interested in exploring how gift-of-life understandings of transplantation might influence this experience. Given the normative expectation of gratitude in response to a gift/benefit received (McCullough & Tsang, 2004) and the centrality of gratitude to gift-of-life discourse (Shaw, 2012), I was also interested in exploring gratitude in the iii context of transplantation. Participants were 19 (i.e., 13 heart, 6 liver) recipients, and 11(i.e., 1 liver, 10 kidney) prospective recipients. I conducted semi-structured interviews, and adopted an interpretative phenomenological approach to analysis.

Results indicated that a generic model cannot be applied across the range of transplantation experiences. The psychosocial experience of receiving a heart is not the same as the experience of receiving a liver, or that of receiving a kidney. Social constructions of the particular organ being received (e.g., the liver, a life-saving organ, is more ‘precious’ than the kidney, a quality-of-life organ), and of those most likely to need that organ (e.g., liver recipients are alcoholics who are responsible for their illness) shape the experience of receiving (or waiting to receive) a heart, liver, or kidney. While all participants acknowledged an awareness of gift-of-life discourse, and its potential to direct their experience (e.g., considerations of whether or not they were worthy or deserving of the gift-of-life), many reported they did not understand transplantation in this way. Recipients did not uniformly express gratitude and, here too, the particular organ being received appeared to exert an influence (e.g., heart recipients most often expressed gratitude, while many liver recipients did not report gratitude in relation to their transplant). These findings provide new insights with respect to the experience of transplantation, and also to the experience of gratitude.

Item Type: Thesis (PhD)
Murdoch Affiliation(s): School of Psychology and Exercise Science
Supervisor(s): Donaghue, Ngaire
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