Organ and tissue donation: exploring the needs of families

Abstract

Relatives of potential organ donors are the most critical link in maintaining organ availability, as they must express their lack of objection before organ retrieval may take place. The often sudden and unexpected nature of the death of a potential organ donor, plus acceptance of a non-stereotypical death, brain stem death, could be expected to create certain challenges for families; yet, their anonymity means little is understood about their experiences. This three-year, longitudinal study sought to clarify the needs of families throughout their decision-making and bereavement, to provide a rationale for further preparation of professionals involved in this sensitive work and the voluntary organisations, such as BODY, that seek to support them. It is the first detailed, longitudinal study of families with whom organ donation was discussed. It was sponsored by the British Organ Donor Society and funded by National Lottery Community Fund. The researchers worked closely with transplant co-ordination services and intensive care units throughout the UK.
Face-to-face interviews and two, self-completed, psychometric measures, the Grief Experience Inventory and the Beck Depression Inventory, were used to elicit the bereavement experiences of 46 family members who chose to donate their deceased relative’s organs and three who declined donation. Participants who chose to donate were interviewed on three occasions at 3-5, 13-15 and 18-26 months post bereavement. Single interviews were carried out with participants who declined donation. Researcher’s field notes aided reflexivity, provided context and explanatory rigour to judgements and decision-making, providing a credible audit-trail of the investigation.
Data were analysed using a constant comparative approach concerned with detecting and highlighting important similarities and differences between participants. Data provided strong evidence regarding issues surrounding sudden death and organ donation, such as identification of participants’ needs (need was defined as the help participants felt they required or would have liked throughout their bereavement). HyperResearch 2.2.3 was used to store and work with transcribed data. Sque’s theory of Dissonant Loss, Walter’s Biographical Model of Grief and the Dual Processing Model of Grief provided the theoretical and analytic frameworks. Descriptive and multivariate statistics were used to analyse the grief and depression measures, using The Statistical Package for Social Sciences (SPSS).
Findings from the interviews indicated participants’ bereavement needs during the hospital stay included: the need for correct, timely information, the need for contact with the deceased, the need to understand the diagnosis of brainstem death, the need to have their special role as next-of-kin recognised, the need for healthcare professionals, from all areas, to understand their ‘emotional mind-set’ at this time. Families needed easy access to both formal (transplant co-ordinators, support groups and bereavement organisations) and informal (friends and family) sources of support after leaving the hospital. They needed to hear from transplant co-ordinators about the use of the organs. Their need to hear about and from the recipients of their loved ones organs increased over time. They needed support and the opportunity to talk about the deceased with friends and families or bereavement support personnel.
Results of the psychometric measures indicated that participants’ depression levels were elevated at 3-5 months post bereavement and reduced to minimal levels, for all but six participants, by 18-26 months. These six participants reported poor formal and informal bereavement support. The lack of such support could therefore have a consequence for on-going depression and grief related distress.
The ability to interchange human organs and tissues introduces a relatively unexplored dimension to grieving that requires specific attention. Bereavement support must begin at the bedside and continue until it is no longer needed. This calls for a much greater integration of support services with a seamless transfer of care from the hospital to a support organisation specifically designed to meet the on-going bereavement needs of families, whatever their decision regarding organ and tissue donation.

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Identifiers

ORCID for Tracy Long-Sutehall: orcid.org/0000-0002-6661-9215

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