Information sharing: its impact on donor and nondonor families' experiences in the hospital

Objective: To illustrate the methods used to convey complicated information regarding the critical injury, and death diagnosed by means of brainstem testing, to the next of kin of potential organ donors.Design: 3 year, prospective, longitudinal study. Participants and Setting: Forty-three family members who chose to donate their deceased relatives’ organs were recruited via 4 transplant coordinating centres, and 3 family members who chose not to donate were recruited via 1 intensive care unit.Method: Face-to-face qualitative interviews were carried out with 46 family members of 43 individuals who died between June and December 2000. Family members who agreed to donation were interviewed during and after their next of kin’s admission to hospital and 3 to 5 months, 13 to 15 months, and 18 to 26 months after bereavement. Three participants who chose not to donate were interviewed on 1 occasion only. Interviews were audio-recorded, and the transcribed reports were analyzed using a comparative, thematic approach focusing on the detection of similarities and differences between cases.Results: Participants who were offered verbal information supported by complementary methods of communication had (1) a greater understanding of the critical injury sustained by their next of kin, and (2) fewer questions over time regarding brainstem testing.Conclusion: Better methods of communicating complicated information are needed, as the sheer load of information shared makes demands of next of kin at a time when they are cognitively and emotionally poorly equipped to respond