Social Inequities and Organ Donation in Sydney\'s Indian Community. No Information, Complexities and Inaction

BACKGROUND: Inequalities in health care are a feature of social exclusion. We consider this in relation to organ donation and Australia's 278 ethnic communities. Organ transplants save lives, but the success rates can increase when the transplants occur within similar ethnicities. In Australia's opt-in system, registration is pivotal to donation consent but anecdotally recorded to be much lower than the national average in ethnic/migrant communities. Our recent research found this was the case with the Indian community in Sydney. In this co-creation study, we collaborated with community representatives to investigate why members of Sydney's Indian community were not participating in Australia's organ donation registration system. One of the challenges we faced was how to engage people with an issue they don't know about. METHODS: Conceptualised within social representations theory, the analysis focused on the shared understandings held by people in the Indian community. Gujarati and Tamil Advisory Panel members participated in two approx. 40-minute discussions prompted by an open question of why registrations were low. Transcripts were thematically analysed. FINDINGS: Shared complex themes emerged at the level of the family and community, not the individual, highlighting an openness to donation coupled with no information about donation in the community. “Not knowing” about the donation processes in Australia and their cultural and religious intersections unfolds as inaction. DISCUSSION: We highlight how inequities in health care are not necessarily due to a lack of awareness or engagement by communities but rather that mainstream health information is not in these communities.