Many Australians who were born overseas and/or do not have English as their first language, often experience communication barriers and distrust services due to racism and cultural stereotyping.
Availability of culturally-appropriate palliative care resources are often lacking, and as we have discovered, the word 'palliative care' often does not exist outside of the English language. Palliative care as a concept and/or service is not always easily translatable in different languages.
This study brings together senior community members and is co-led by Mr Peter Laintoll (Lyell McEwin Volunteer Association) in collaboration with Mr Kamal Dahal, Member of the South Australian Bhutanese Association along with Professor Gregory Crawford, Northern Adelaide Palliative Care Service and The University of Adelaide, Associate Professor Ann Dadich of Western Sydney University and Dr Aileen Collier of University of Auckland and RePADD at Flinders University.
In keeping with our Brilliance program of work using positive organisational scholarship and video reflexive ethnography, rather than focus on the barriers, our project seeks to understand what safe and high-quality palliative and end-of-life care is from the perspective of Bhutanese, Syrian, and Afghani communities in Northern Adelaide. Working closely with new and emerging communities, we wanted to develop video resources by and for communities themselves.
Kamal’s community have already conveyed some of what is important to them. Care at home is often preferred. This is in the context of how difficult it can be to receive high-quality care in an institutional setting with its associated language barriers and unfamiliar food and customs. Wishing to respect the needs and wishes of patients in hospital, members of the Bhutanese community told us they often ‘feel for’ other patients around them. They are often uncomfortable and/or reluctant to engage in their own cultural and spiritual customs with others in mind.
Our colleagues Kirk and Aiden at Typeface Productions are assisting us to produce culturally and language-appropriate videos on issues that matter most to communities. As they state on their website “A good video gives people a voice”. The Brilliance program of work seeks to do exactly this by ‘making spaces’ for voices to be heard and to make the ‘unseen’ seen. Kirk and Aiden have too, learned much about palliative care as we take this journey together “We thought palliative care was all about death and dying” expressed Kirk.
To find out more view the Brilliant Palliative Care - 2020 Research Production.
You can read more about the Brilliance program of work view the EAPC blog How to find and promote brilliant palliative care.
If you would like to know more about the study please contact Professor Gregory Crawford Gregory.Crawford@sa.gov.au and/or Peter Laintoll peter.laintoll@sa.gov.au