Identifying a community need
In December 2019, at a community meeting, PCV staff noticed the interest in palliative care services within CALD communities increased when the conversation moved to the practical benefits of palliative services.
Current PCV literature on palliative care, available in 19 CALD community languages, focuses on the philosophy, approach and support in general terms.
Palliative Care Victoria, with the support of Palliative Care Australia, decided in January 2020 to develop a one-page Fact Sheet describing the practical benefits of palliative care services. This Fact Sheet aimed to address what the ethnic communities wished to know about palliative care.
Establishing a list of services
In consultation with community and specialist palliative care services across metro and regional Victoria, a list of 12 palliative care support services was generated.
- A nurse calling you or visiting your home to see how you are going;
- Help to manage any physical problems such as pain, so you are more comfortable;
- Help to understand how some things might change – things such as taste, how much food you want to eat, your energy levels;
- Talking to your family members if they are tired or distressed;
- Help to talk to doctors and other health providers;
- Help to understand all about your medications – what it is, what it does and when it should be taken;
- Help to understand your options for treatment in Australia and helping you to choose what is best for you;
- Arrange for you to have equipment to help you in your home, including a hospital bed, shower chair, wheelchairs etc. (a small cost may apply);
- Arrange respite in the home for family and carers, so they have a chance to rest;
- Help to understand where financial help can be available, and how to access it;
- Help to meet spiritual care needs and manage grief.
- Help to find other services you may need.
CALD communities provide their perspective
Twenty-one language groups were identified representing established and emerging ethnic populations across urban and rural Victoria. These groups were approached to hold consultation/focus groups and to translate the list of services.
Over a period of three months, each language group met to share their perspectives and prioritise the list according to importance within their cultural context. Consequently each language Fact Sheet has the same content, but services are ranked differently. Over 300 community representatives across the 21 language groups contributed to develop the resource.
Extended benefit of project
Through this consultative process, many of the community representatives learnt about or improved their understanding of services and support provided by palliative care. Of the 300 participants, a large percentage are in a position to have an ongoing influence in their community in relation to care options at end of life.
The opportunity now exists to expand on this work by initiating further consultative review of existing palliative care resources. This will continue the momentum of discussion around palliative care in these communities, as well as ensuring relevancy and accessibility of palliative care health literature.
We wish to express our appreciation to every member of the community groups for providing their time and views to inform this project.
The Fact Sheets are available to view or download from the Palliative Care Australia and Palliative Care Victoria websites (refer below). Ethnic communities may request hard copies of the Fact Sheets from Palliative Care Victoria by emailing info@pallcarevic.asn.au or phoning 03 9662 9644.