Aim: To clarify the decision-making and bereavement needs of family members who had organ donation discussed with them; to provide a rationale for further preparation of professionals involved in this sensitive work.
Methods: This work used a 3-year longitudinal design. A sample of 49 family members who had donation discussed with them, were recruited. At 3 to 5, 13 to 15, and 18 to 26 months postbereavement, face-to-face interviews and two, self-completed; psychometric measures, the Beck Depression Inventory II and the Grief Experience Inventory, were used with participants who chose to donate. Single interviews were carried out with participants who declined donation. Data were analyzed using a comparative, thematic approach and multivariate statistics, focusing on detection of important similarities and differences between cases.
Findings: Four main categories were identified that illustrated the issues that influenced families' ability to agree or decline donation and their perception of the decision-making process. The categories were concerns about knowledge of the deceased's donation wish, views held by the extended family about donation, giving meaning to the death and events that occurred in the hospital that were perceived as positive or negative. The role of children in the decision-making about organ donation was highlighted. In conclusion, hospital care affected participants' donation decision-making and appeared to impact on subsequent grief. To facilitate decision-making and bereavement that is uncomplicated by questions about brain injury and subsequent death, families needed time to understand the information given, care in the way and context that information was shared and attention to their emotional needs.