National Wave 1 Donor Family Study

The OTA conducted a national study of family experiences of organ and tissue donation for transplantation. The study collected a wealth of information on the family’s experience from early interactions with hospital and DonateLife staff and initial donation conversations through to the follow up support provided to families after a donation decision was made.  This insight provides valuable evidence for the ongoing review and enhancement of the care and support provided to families before, during and after donation.

This research builds on similar work undertaken with donor families since 1995, by the Australasian Transplant Coordinators Association (ACTA). The OTA will undertake ongoing waves of the research to occur every two years.

Wave 1 of the study by the OTA provides feedback from families who made a donation decision in 2010 and 2011, including families that consented to or declined donation.  The study commenced in September 2013 and involved 132 families who made a donation decision in 2010 and 2011.  A total of 186 individual family members agreed to participate in the study and completed a survey questionnaire and/or participated in a face-to-face interview.

The OTA thanks the family members who volunteered to participate in this study and share their experience.  The Executive Summary can be accessed here and the full report can be accessed here.

Wave 2 of the study is being planned to seek feedback from families who made a donation decision in 2012 and 2013.


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the facts about organ and
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