Understanding organ donation in the collaborative era: a qualitative study of staff and family experiences

Background: Despite the success of the Breakthrough Collaborative Methodology (BCM) in increasing organ donation rates there has been little published evidence on the effect of the BCM on the wider attitudes and experiences of those involved in organ donation. This study sought to identify whether the National Organ Donation Collaborative in Australia had any additional influence on improving the experiences of staff and family members in the organ donation process. Methods: In-depth qualitative interviews with 17 family members from 13 families who had agreed to the organ donation of a deceased relative and 25 nurses and intensive care specialists at the Alfred Hospital, Melbourne, Victoria were carried out. Results: The key factor in family members' decision to donate was prior knowledge of the deceased's donation wish. Although most family members did not regret their decision to donate, many were deeply dissatistified and, at times, confused by the technical and administrative nature of the donation process. Most staff members commented that the key community message about donation should be to encourage people to discuss donation rather than urging people to sign donor registers. Conclusion: This study identified valuable insights into the processes by which family members and intensive care unit staff deal with the actual processes of donation. Findings suggest that the process for families is far more complex than a simple agreement or refusal to donate. This study suggests that we should not assume that 'rates' of donation in Australia would increase merely through administrative programmes or marketing campaigns.