Blessed yet bereft :a qualitative exploration of family member experience of heart, liver, and/or lung transplantation in the UK

Abstract

Organ 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.