Bereaved donor families' experiences of organ and tissue donation, and perceived influences on their decision making

Abstract

Purpose To elicit bereaved families' experiences of organ and tissue donation. A specific objective was to determine families' perceptions of how their experiences influenced donation decision-making. Methods Retrospective, qualitative interviews were undertaken with 43 participants of 31 donor families to generate rich, informative data. Participant recruitment was via 10 National Health Service Trusts, representative of five regional organ donation services in the UK. Twelve families agreed to DBD, 18 agreed to DCD, 1 unknown. Participants' responses were contextualised using a temporal framework of ‘The Past’, which represented families' prior knowledge, experience, attitudes, beliefs, and intentions toward organ donation; ‘The Present’, which incorporated the moment in time when families experienced the potential for donation; and ‘The Future’, which corresponded to expectations and outcomes arising from the donation decision. Results Temporally interwoven experiences appeared to influence families' decisions to donate the organs of their deceased relative for transplantation. Conclusions The influence of temporality on donation-decision making is worthy of consideration in the planning of future education, policy, practice, and research for improved rates of family consent to donation.