How doctors can lead the way in their communities: Co-creation, the Indian community and organ donation registration

Abstract

Background and aims: Transplant success rates can increase when organs and tissues are matched within ethnic communities, but how well are the processes around organ donation understood by discrete ethnic communities in Australia? We investigated this in relation to one ethnic group, the Australian-Indian community in Sydney.

Methods: A culturally appropriate survey and dissemination strategy was co-created with Indian community members through an Advisory Panel. Items were informed by a thematic analysis of cultural beliefs shared through the advisory panel discussions and measured awareness and practices associated with organ donation and transplantation and beliefs about organ donation and registration. Donation information was provided at the end.

Results: Two hundred and thirty-eight participants completed the survey. Hinduism along with Tamil and Gujarati were the most frequently identified religious and cultural backgrounds. The processes around organ donation were not well known, and Australian Organ Donor Register registration rates were below the national average. Principal component analysis revealed positive, social, medical trust, concerns, and cardiac and brain death belief factors. Doctors played a key role in generating trust in the donation system, decisions about organ donation were embedded in family and community, and family discussion was related to increased registration. Registered participants reported higher scores on medical trust beliefs, which also predicted family discussion.

Conclusion: The information needed to understand the process of organ donation and registration in Australia is not embedded in this community, highlighting the need for programmes to be tailored to each culturally diverse community rather than culturally diverse communites in general. Doctors and the advisory panels are pivotal in this process.

Keywords: Australian Organ Donor Register; Indian community; beliefs; co‐creation; organ donation; registration.