The diversity of Australia’s population is a valued part of who we are as a nation. However, this same diversity can also limit access to essential services such as health and aged care that others might take for granted. This has led to development of guidance such as the Australian Charter of Healthcare Rights and the Aged Care Diversity Framework aimed at supporting everyone to gain access. 

Equally important is supporting the varied needs of our diverse population at the end of life. The National Palliative Care program has taken on this task and as part of that in September 2021 CareSearch launched the new Community centre including a section focused on diversity. 

Guided by the National palliative care strategy 2018 we currently include specific support for the following groups:

• Aboriginal and Torres Strait Islander People
• Care Leavers
• Culturally and Linguistically Diverse (CALD)
• Homelessness
• Intellectual Disability
• Lesbian, Gay, Bisexual, Transgender, and Intersex (LGBTI)
• Older People
• Prisoners
• Rural and Remote Areas
• Veterans

Of these groups, the CALD community represent the largest. In 2021, one in three of Australia's resident population were born overseas. In other words, approximately 7.5 million people. Consider for a moment the following taken from research into the experiences of South Asian immigrants engaging with the Australian health system:

“Health professionals [doctors, nurses] should provide clear information and make sure that we understand what they are saying. I noticed that even in the reception area, they do not provide enough information to us. I have seen them engaging in conversation with people who speak English but that does not happen to us, as we cannot speak English well. They also do not pay much attention to us. I felt discriminated against, and I think this should not happen. They should respect everyone and treat others equally.” [1]

The experience described here likely mirrors that of many people identifying with each of the groups listed above. Their difference setting them apart. Their exclusion quite likely unintended, but nevertheless felt and multiplied when multiple barriers to care intersect. Now imagine the experiences of these fellow Australian residents after diagnosis of a life-limiting condition such as cancer, dementia, or advanced heart, kidney, or lung failure. 

It is this knowledge that has helped to shape the CareSearch Diversity Hub. The thousands of visits to the Diversity section since its release tell us the need is real. 

We understood that knowing how to access palliative care is more difficult if faced with an unfamiliar system. The reasons can be varied including that you have rarely engaged with the local system, have taken up residence in Australia later in life, or you are familiar with a system that did not provide palliative care. So CareSearch began with how and where to access care. We then matched available support and resources to the very real and known barriers faced by people from diverse backgrounds.

The aim was to move on from talking to action, to connect people with support that would help address barriers such as discrimination, finding services, language, or talking about death and dying. 

Australian census data tells us that one in five people speaks a language other than English at home. Again, we are referring to millions of Australian residents and this is a dynamic area. At least 350 languages were listed in the 2021 census. Recent modelling of our older migrant community also projects a shift in the population of poor English speakers toward an Asian-born dominance as numbers decline for some European-born migrant groups. [2] So CareSearch brought together palliative care-related resources in 50+ languages for people and their care providers to easily access as needed. 

Because inclusive practice starts with knowing your community, we have also made it easier to learn about the diversity within local communities. The accompanying practice form can be used to record what you find, and the practice reflections might be of use in professional development activities.

Health professionals also need to be aware how their own culture and that of others can influence responses to pain and palliative care. So, we created a resource to take them across the world to explore these different cultural influences. 

Diversity is in the name. There is no single profile, and people and their culture will change over time and across generations. Inclusive practice is a partnership built on letting others know who you are and care providers getting to know the person. CareSearch’s aim is not to provide a checklist, but to raise awareness and help people connect with the support they need. When time is not on your side then access to the right care at the right time should be. 

References:
1.    Adhikari, M., Kaphle, S., Dhakal, Y. et al. Too long to wait: South Asian migrants’ experiences of accessing health care in Australia. BMC Public Health 21, 2107 (2021). https://doi.org/10.1186/s12889-021-12132-6
2.    Temple, J., Wilson, T., Brijnath, B. et al. English Language Proficiency Among Older Migrants in Australia, 2016–2046. Int. Migration & Integration 23, 403–429 (2022). https://doi.org/10.1007/s12134-021-00836-y
 

Author: Dr. Katrina Erny-Albrecht, Senior Research Fellow, CareSearch