Addressing stigma and engaging orthodox religious communities around organ and tissue donation.

Lyn Phillipson¹, Karen Larsen-Truong¹, Sandra Jones¹, Leissa Pitts², Miriam Nonu³, Marilisa Filippi³, Anica Petkovski², Helen Tsalidis², Zaga Trkulja²

¹Centre for Health Initiatives, University of Wollongong, Wollongong, Australia, ²Multicultural Health Service, Illawarra Shoalhaven Local Health District, Wollongong, NSW, Australia, ³Organ and Tissue Donor Co-ordination, Illawarra Shoalhaven Local Health District, Wollongong, NSW, Australia

In Australia, people from culturally and linguistically diverse backgrounds are less likely to have held memorable family discussion or made decisions about organ and tissue donation. Formative research conducted in 2011 with members of the Macedonian, Serbian and Greek Orthodox religious communities in the Illawarra-Shoalhaven highlighted the significant barriers to discussing and making an informed decision. In response to identified needs, an integrated social marketing program including ‘testimonial-style’ resources, information booths, educational forums (involving religious leaders, medical experts and testimony) and a media campaign were conducted.  Importantly, resources and events targeted the specific concerns of the communities and provided opportunities to discuss and raise questions in a supportive environment. Results from a survey evaluation (n=182) showed that more than 90% of all respondents agreed that the educational resources answered their questions and that they had a better understanding of the views of other community members about organ and tissue donation.  Most Macedonian (77.6%), Greek (94.3%) and Serbian (97.6%) respondents felt that they also had a better understanding of the views of the Orthodox Church. Almost all Macedonian (98.6%), Greek (100%) and Serbian (97.7%) respondents felt that they were more aware of the benefits of organ and tissue donation and importantly, 50% of Macedonian, 63.8% of Greek and 39.5% of Serbian respondents had discussed their views about organ and tissue donation with their family at the end of the program. Overall, the project was able to translate results from research into a resources and activities which promoted greater awareness and family discussion within communities who previously considered the topic taboo. The project also adds to the evidence base required to understand and address the specific needs of Orthodox religious communities in regard to the promotion of organ and tissue donation.

¹This project was conducted as a partnership between the University of Wollongong and the Illawarra Shoalhavan Local Health District. It was funded by a grant from the Commonwealth Organ and Tissue Authority