Help us understand the experiences of people affected by pancreatic cancer
Why do we need your help?
Cancer Australia wants to develop a plan to improve outcomes for people affected by pancreatic cancer (called the National Pancreatic Cancer Roadmap).
Cancer Australia understands that having pancreatic cancer may be more difficult for people from different ethnic and multicultural backgrounds because of things like language, cultural or religious beliefs, and understanding the Australian health system.
Cancer Australia has asked us (Federation of Ethnic Communities’ Councils of Australia (FECCA)) to find out what having pancreatic cancer is like for people from different ethnic and multicultural backgrounds so that the Roadmap can help all Australians.
FECCA will then write a report for Cancer Australia which will inform them to better help multicultural communities affected by pancreatic cancer.
How can you help?
If you have pancreatic cancer or a member of your family has had pancreatic cancer, we would like to hear about your experience.
We would like to ask you things like:
- How did you or your family member find out you had pancreatic cancer?
- What has it been like having pancreatic cancer?
- Did doctors, nurses and other health workers:
- Explain everything to you in a way you could understand?
- Arrange an interpreter if you needed one?
- Give you information in your own language?
- Involve you in making decisions about what to do?
- Talk to you about clinical trials for new treatments?
- Tell you about other services or organisations that could help?
- What treatments have you had and how have they affected you?
- Do you think doctors and other health workers understood your needs?
If you would like to help and tell your story, you can do this in different ways – in English or in your own language. You could:
- fill in a survey.
- tell your story in writing or over the phone (we will arrange a free, confidential interpreter if you require one)
If you want to help, what do you do next?
- You could tell us you would like to tell your story:
- Send an email to firstname.lastname@example.org, or
- Write us: FECCA, PO Box 344, Curtin, ACT 2605, or
- Call us 02) 6282 5755
- We will then contact you to explain the process.
Your privacy is very important to us and we will ensure we protect your privacy. This is how we do it:
- Before you tell us anything, we will explain everything to you in English or in your own language and ask for your consent.
- You can tell us not to include things if you are not comfortable.
- At any time, you can can tell us that you do not want to continue with this project.
- We will not include the following in our report to Cancer Australia:
- Personal information like your name, your address and contact details
- The names of any organisations that have been involved with your pancreatic cancer.
- We will ask your permission to use information about your age, your gender and your ethnicity/cultural group. This will help us tell Cancer Australia if there are any important differences in the experience of younger or older people, men or women, or different groups.
Who is Cancer Australia?
Cancer Australia is a Government Agency set up in 2006 to make things better for all Australians affected by cancer, and their families and carers.
Cancer Australia makes recommendations to the Australian Government about how to improve the lives of people affected by cancer and make sure all people have the same access to services and treatments.
Cancer Australia works with health and medical services, researchers and community groups. The agency also focuses on populations who may have poorer health outcomes, including Aboriginal and Torres Strait Islander peoples, people living in rural and remote Australia and people from different ethnic and multicultural backgrounds.
Who is FECCA?
FECCA is the Federation of Ethnic Communities’ Councils of Australia (FECCA).
It is the national organisation which represents Australians from different ethnic and multicultural communities.
FECCA has member organisations in each State and Territory and in many regions of Australia. The role of FECCA is to advocate on behalf of those communities about issues that affect them. FECCA has recently advised the Australian Government about the special needs of people from different ethnic communities in aged care and COVID-19.