The Australian government is now operating in accordance with the Guidance on Caretaker Conventions, pending the outcome of the 2025 federal election.
The National Study of Family Experiences of Organ and Tissue Donation has collected extensive feedback on donor families’ experiences, from early interactions with hospital and DonateLife staff and initial donation conversations to follow-up support after donation.
These insights provide valuable evidence for the ongoing improvement of the care and support for families before, during and after donation.
The OTA sincerely thanks the family members who volunteered to participate in this study and share their experience.
These studies are called Waves.
The Wave 5 study involved 453 families who made a donation decision in 2018 and 2019. 525 individual family members participated, representing 421 families who consented to donation and 32 families who declined donation.
The Wave 4 study involved 372 families who made a donation decision in 2016 and 2017. 429 individual family members participated, representing 348 families who consented to donation and 24 families who declined donation.
The Wave 3 study involved 261 families who made a donation decision in 2014 and 2015. 290 individual family members participated, representing 229 families who consented to donation and 32 families who declined donation.
The Wave 2 study involved 275 families who made a donation decision in 2012 and 2013. 319 individual family members participated, representing 263 families who consented to donation and 12 families who declined donation.
The Wave 1 study involved 132 families who made a donation decision in 2010 and 2011. 186 individual family members participated, representing 131 families who consented to donation and one family who declined donation.
