Families who choose not to donate organs: approaching potential study participants

Long, T., Sque, M. and Payne, S. (2004) Families who choose not to donate organs: approaching potential study participants. International Palliative Care Nursing Research Conference, Monash University, Monash Centre, Prato, Italy. 07 - 09 Jun 2004.

Abstract

The demand for cadaveric organs and tissues to increase health benefits to certain individuals has always outstripped supply. Recently this crisis has deepened. Over the last five years total numbers of cadaveric donors has dropped in the UK. More worryingly refusal rates for the best recruitment area in the UK increased noticeably in 2002, from an average of 30% to approximately 50% of families approached about donation. These figures are particularly worrying as demand for organs and tissues are set to rise in the near future. It has been estimated that there will be a 30% increase in the number of patients with end-stage renal failure over the next few years. Therefore there is an urgent need to understand the experiences of families with whom donation was discussed.
Researchers at the University of Southampton carrying out a three-year study exploring the decision-making process and bereavement of families who agreed to organ donation and those families that declined were unable to identify an adequate sample of non-donating families, recruited via intensive care units (ICU). The main obstacles to recruitment appeared to be: A lack of records about non-donating families; ICUs imposing their own response systems for recruitment above that necessary for the research; reluctance of ICU staff to send out recruitment packs; the view that non-donating families are different from donor families in that they would be more distressed about being contacted to participate in the research. Donating families because they agreed to organ donation, were perceived to be less traumatised. Non-donor families therefore were not given the opportunity to participate in the study, even if they had wished to do so, their views could not be investigated nor their bereavement needs assessed. This presentation will elaborate the limitations on recruitment and discuss efforts to overcome these constraints in the future.

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