PhD ThesisOrgan transplantation is currently considered the gold standard therapy for extending the lives
of individuals with end-stage organ failure. At present, demand for donor organs significantly
exceeds supply. To ensure best use of resources, transplant teams rigorously assess
individuals before adding them to the waiting list. Individuals must demonstrate that they
have a good social support network, often comprising close family members, to meet their
informal care needs. Traditionally, social science research in the field of transplantation has
focused overwhelmingly on organ recipients, clinicians, and donor families; comparatively
little is known about the experience of family members providing such support. This thesis
addresses this dearth of knowledge by exploring the experience of, and impact on, family
members supporting relatives through the transplantation process. Potential participants were
recruited to qualitative interviews through UK-based transplant charities. Twenty family
members of individuals living with a transplant were interviewed retrospectively. Four family
members of individuals on the transplant waiting list were interviewed longitudinally, on two
occasions between six and nine months apart. All interviews were audio-recorded, transcribed
verbatim, and analysed using a thematic approach. Data demonstrate that family members
experienced significant disruption throughout the transplantation process, and that this had a
notably detrimental effect on participants’ relationships, their wellbeing, and their sense of
self. Accounts reveal that family members perform emotion work to manage this disruption,
with varying degrees of success. Existing literature exploring disruption and emotion work
among informal carers predominantly focuses on those supporting relatives with specific
conditions, such as dementia and cancer. This thesis is among the first to explore disruption
and emotion work in the context of transplantation and thus clarifies similarities between this
and other care contexts, as well as issues that appear specific to, or particularly problematic
for, family members supporting relatives through transplantation