Aboriginal and Torres Strait Islander Attitudes to Organ Donation in Central Australia: A Qualitative Pilot Study

Background: Organ transplantation is a well-established intervention but is reliant on the donation of organs and tissues, mostly from deceased donors. The proportion of Australians proceeding to organ donation (OD) has increased, but the proportion of Indigenous Australians proceeding remains two-thirds that of non-Indigenous Australians. We sought to explore perceived barriers and enablers for the involvement of Indigenous peoples in the OD process.

Methods: Qualitative methodology centered around focus groups was used to capture the experiences and perspectives of Indigenous people regarding OD. A purposively sampled group of Aboriginal Liaison Officers working within the Alice Springs Hospital Intensive Care Unit (ASH ICU) participated in up to 6 focus groups during 2021 with subsequent thematic analysis of the enablers and barriers to Indigenous participation in the OD process. The ASH ICU is the only ICU servicing Central Australia, and 70% of admissions are Indigenous patients.

Results: Four primary themes emerged: OD is a new and culturally taboo topic; conversations related to OD are confronting; education is needed (both about OD and cultural education for clinicians); and lack of trust in the healthcare system.

Conclusions: There are cultural barriers to engaging in the OD process and clinicians need more training on the delivery of culturally safe communication is needed. Despite this, there was a recognition that OD is important. Education about OD needs to be place based, culturally and linguistically appropriate, informed by local knowledge, delivered in community, and occur before a family member is admitted to ICU.