By Dr Sabine Wardle, Lecturer in Social Work and Human Services in the Charles Sturt University School of Humanities and Social Sciences.

As we recognise National Palliative Care Week 2021, this year’s theme, Palliative Care …. it’s more than you think, is a timely reminder that much about this care is misunderstood and completely unfamiliar to the public.

Unfortunately, this is especially true for culturally and linguistically diverse (CALD) population groups.

One of the major findings of my research highlighted that among CALD groups, there is an inadequate understanding of the concept of palliative care and its services.

For people from CALD backgrounds, awareness of palliative care is further thwarted by various factors, such as communication, and cultural and religious barriers.

This is particularly relevant to the cultural understanding of the concept of palliative care.

For example, there is no such care in some cultures that translates to the Western concept of palliative care; instead, the concept of ‘care’ is limited to the close-knit families and traditions that have been in practice since well before the introduction of the Westernised biomedical concept of palliative care.

The more significant issue from a health care perspective is the lack of information about palliative care facilities and the lack of knowledge of palliative services, including pain relief, psychological support, respite care, and the treatment of the body after death.

Without awareness of what palliative care is, what palliative care services are available, and not knowing how to access palliative care facilities, the CALD communities remain disempowered to access medical and psychosocial support.

The research I have conducted suggests that healthcare staff providing direct and indirect services to older people from CALD backgrounds have a mixed understanding of culturally appropriate palliative care.

The subtle differences from culture to culture in the same cultural platform may have many implications for those involved in planning and providing palliative care for older members from CALD backgrounds.

As a result, there is a need for diversity and creative research to make healthcare workers and palliative care service providers aware of the needs of people from CALD backgrounds and explore ways in which palliative care might be most effectively delivered.

I am currently working on a study that aims to accomplish this. It follows from my previous research recommendations that highlighted the significant need to build bridges between the service users and service providers about palliative care and what it has to offer.

My project, Preserving and promoting cultural practices in palliative care through digital storytelling, aims to acquire knowledge of cultural practices, such as rituals, customs, and food, which are crucial at the end stage of life for culturally appropriate palliative care service delivery to the CALD population groups.

This project recognises the potential of giving voice to the silenced, marginalised, and potentially vulnerable population group of adults from CALD backgrounds.

The digital storytelling methods used for this project can encourage individual healing, connect participants through communicating about their shared experience, and deepen societal empathy and responsiveness towards the adult CALD population’s end-of-life care needs.

In the next few weeks, I will be inviting CALD community members who usually reside in the Riverina region and have had experience with palliative care and/or their families and community spiritual leaders to participate in this research.

For people interested in participating in this research, please contact me directly via email swardle@csu.edu.au or phone 02 6933 2780.

The project is funded by a Charles Sturt University Early Career Grant.