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Research project: Exploring the end of life decision-making and hospital experiences of families who did not donate organs or tissues for transplant operations - Dormant - Dormant

Currently Active: 

Human organ transplantation from cadaveric donors is an economically viable, successful therapy that can extend life expectancy and improve quality of life.


However, the success of transplantation is limited by the low availability of organs, giving rise to an escalating number of potentially preventable deaths. Relatives of potential organ donors are the most critical link in maintaining organ availability, as they must express their lack of an objection before organ donation can take place. Sque et al (1) carried out a comprehensive three-year, longitudinal study that provided insights into the bereavement of families who chose to donate organs, but, due to low recruitment numbers, issues for families who did not donate were not fully explored. Little is known about families who do not donate and their experiences of the donation process. Limited information exists regarding their bereavement needs and how these needs may be met, issues that could have implications for organ availability. This independent study seeks to provide helpful information about families who do not donate and support to the findings of UK Transplant's National Potential Donor Audit (2) , presently being carried out, to assess the true potential for solid organ donation in the UK.

Main question(s)

The overall aim of this study was to explore the end of life decision-making and hospital experiences of bereaved adults with whom organ and tissue donation was discussed and who declined donation.


The next of kin from families who declined donation of organs and tissues were invited to participate in the study. Participants were recruited from a range of geographical locations in the UK , through local newspapers and radio appeals. Geographical spread was important due to differences in local hospital practices and end of life decision-making support. Four NHS Trust intensive care units also participated in recruiting families. Twenty-six families were recruited to the study.

Data was collected using qualitative interviews, demographic information and standardised grief and depression measures. Interview data was fully transcribed and subjected to thematic analysis. HyperResearch, a computer software package, was used to store and manage the data during this process. Descriptive and multivariate statistics were used to analyse the standardised grief and depression measures. Reflective field notes and memos were written about each stage of the research to give explanatory rigour to the researchers' judgements and decision-making and to provide a credible audit-trail of the investigation.

Main outcomes

The study examined the hospital experiences of relatives, their perceptions of the decision-making process, and their emotional reactions to the death and potential donation. An understanding of what the experience meant to them, and the identification of their end of life decision-making needs, was elicited. The study provided a rationale for further preparation of professionals involved in this sensitive work, and the voluntary organisations, such as British Organ Society, that seek to support them.


Project team

Tracy Long 

Project funder

UK Transplant 2006

Related research groups

Complex Healthcare Processes
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