Organ and Tissue Donation: An Evidence Base for Practice

By Magi Sque; Sheila Payne | Go to book overview

4 A dissonant loss: the
bereavement of organ donor
families

Magi Sque


Introduction

Organ and tissue donation usually arises out of situations of acute injury or the onset of severe illness that terminates in the unexpected, sudden death of a relatively young, previously healthy individual. Most studies have focused on provision for specific needs of the bereaved family rather than attempted to capture and describe the nature and meaning of having a relative in a critical care situation that ended in organ donation. Without an adequate understanding of the psychological and social context in which these events unfold, an informative picture cannot be adequately developed about relatives' experience: of what happened, its nature and quality, and how family care may be safeguarded and maximized. Therefore a shift is needed towards an approach that better captures the role of personal meanings, and the complexity and uniqueness of the experience, to understand how families perceived their situation and coped with their often profoundly poignant and rueful circumstances.

Theory derived inductively from research data has the power to explain real-life situations. Revealing the main bereavement concerns of organ donor families through theory derived from their experiences illuminates variables that provide insights to promote best practice. This may be through the ability to predict clinical situations and therefore offer evidence to health care professionals to appropriately support and guide families in their decisionmaking and bereavement.

This chapter is based on an English study carried out through face-to-face interviews that examined the experiences of relatives of multi-organ donors. Grounded theory (Glaser and Strauss 1967) was used to develop an understanding of relatives' experiences of organ donation. This approach facilitated the development of a theory that could be applied to family care, based on the actual experiences of the individuals involved. Donor relatives' experiences were found to revolve around a theme of conflict and resolution. Their

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