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«Acknowledgments We thank all of the participants for sharing their stories and experiences and the many health service providers that assisted the ...»

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“A whispered sort of stuff”

A community report on research around Aboriginal people’s beliefs

about cancer and experiences of cancer care in Western Australia

Sandra C Thompson, Shaouli Shahid, Heath S Greville, Dawn Bessarab

Artwork

The artwork featured in this report is from a painting called ‘Relay for Life’ painted by Geraldtonbased Yamaji Art Centre artists Margaret Whitehurst, Charmaine Green and Barbara Merritt. The

painting was donated to the 2009 Geraldton Cancer Council Relay for Life in recognition of all people who are affected by cancer, which knows no barrier. We thank Margaret, Charmaine and Barbara for allowing us to use their work in this report.

Acknowledgments We thank all of the participants for sharing their stories and experiences and the many health service providers that assisted the process.

We acknowledge the invaluable contribution of the Aboriginal Reference Group and many other colleagues for their advice and assistance during this research, more than we name here.

All of the following helped in various ways with this research: Leanne Pilkington, Francine Eades, Dot Henry, Gwen Rakabula, Michael Doyle, Peter Howat, Brian Bishop, Timothy Threlfall, Katie Thomas, Moyez Jiwa, John Mallard, Terry Slevin, Jude Comfort, Lizzie Finn, Kim Worthington, Anil Tandon, Ann Flynn, Joyce Trust, Rosemary McGuckin, Pam Haselby, Karina Powers, Annie Pepper, Pauline Gregory, Marisa Gilles, Rosemary Van den Berg, Kim Scott, Tracey Eades, Emma Croager, Sandra Eades, Sally Redman, Liz Brain, Gaby Bracks, Patricia Davidson, and Angela Durey – we thank them all.

Funding support This research was supported in part by funding from Cancer Council Western Australia and the NHMRC Capacity Building Grant (ID 457279).

How this report should be cited Thompson SC1,2, Shahid S2,3, Greville HS2, Bessarab D2. “A whispered sort of stuff” A community report on research around Aboriginal people’s beliefs about cancer and experiences of cancer care in Western Australia. Cancer Council Western Australia, Perth, 2011.

Affiliations of Authors:

1. Combined Universities Centre for Rural Health, University of Western Australia, PO Box 109 Geraldton, WA 6531.

2. Aboriginal Health Education and Research Unit, Curtin Health Innovation Research Institute, Curtin University GPO Box U1987 Perth WA 6845

3. The West Australian Centre for Cancer and Palliative Care, Curtin University GPO Box U1987 Perth WA 6845 ISBN 1 876628 50 2 “A whispered sort of stuff” A community report on research around Aboriginal people’s beliefs about cancer and experiences of cancer care in Western Australia Sandra C Thompson, Shaouli Shahid, Heath S Greville, Dawn Bessarab Summary This research project found out about Aboriginal people’s experiences of cancer in Western Australia.

Cancer can be a serious problem but it can often be treated and people can go on to live a long life. Recognising symptoms of cancer and getting it treated early can make a huge difference.

From doing the research, we found that

• Aboriginal people are sometimes not aware of the symptoms of cancer and leave it too late to get things checked out.

• Sometimes Aboriginal people are afraid of cancer and don’t want to get it checked out, or to talk about it. To break down this fear, we need to have more talking and sharing good stories in the community about Aboriginal people who receive treatment and survive cancer.

• Aboriginal people reported good and bad experiences of cancer services.

Things that can make cancer services better are:

• Helping people who need to go to Perth for treatment and explaining everything before they go so they know what to expect

• Getting more information to Aboriginal people about the Patient Assisted Travel Scheme (PATS)

• Having a liaison officer in the Hospital who makes sure the accommodation in Perth is right, and close to shops

• Making the hospital environment as friendly and welcoming as possible, including giving a welcome to Noongar country and welcoming extended family of patients

• Having food available in hospital that Aboriginal people like to eat, such as kangaroo

• Doctors need to take the time to make sure they explain things carefully and check that the patient and their family understand

• Good communication between local hospitals or clinics and the treatment hospitals in Perth will help Aboriginal people to have a good experience when they travel to Perth for treatment

• Aboriginal people need to have information about what kinds of support are available so they know what to ask for if they need help.

Recommendations The research has made a number of recommendations to improve cancer outcomes for Aboriginal people.

The recommendations are listed at the end of this report:

• Community education – getting more information in the community about preventing cancer and early diagnosis, and sharing more positive stories about treatment and recovery.

• Support systems such as transport, accommodation and hospital liaison services.

• The health system including transfer of care from the community to the hospital and back to the community, training doctors and other health staff to be more sensitive and responsive to Aboriginal needs.





Contents

–  –  –

5. Recommendations from the research

6. Did this research project help and what changed?

7. Peer-reviewed publications

1. What is Cancer?

The body is made up of many types of cells. These cells grow and divide in an orderly controlled way to make more cells as they are needed to keep the body healthy. When cells become old or damaged, they die and are replaced with new cells.

Sometimes this orderly process goes wrong. Cancer refers to diseases in which abnormal cells divide without control and are able to invade other tissues. Cancer cells can spread to other parts of the body.

Cancer is not just one disease but many diseases.

Cancer is the biggest killer of non-Aboriginal people and the third largest killer of Aboriginal people after heart disease and injuries from car accidents and self-harm.

For various reasons, when Aboriginal people get cancer, it is more likely to lead to death

than for non-Aboriginal people. Some of these reasons are:

• the stage of cancer is often more advanced by the time it is recognised

• Aboriginal people are less likely to accept and receive adequate treatment

• Aboriginal people get more serious cancers (such as cancers of the lung and liver) that are more likely to be fatal.

Increases in cancer cases and Aboriginal people dying more often because of cancer can be explained in terms of risk through smoking, passive smoking (breathing in tobacco smoke), being overweight and lack of exercise. Many other things such as grief, stress, and poverty can influence these behaviours.

What is worrying is that compared with non-Aboriginal people, even for the same cancer that is diagnosed at about the same stage, Aboriginal people are more likely to have a shorter life expectancy. As researchers, we were interested in finding out why.

2. What was our research about?

Background This research report was written to give feedback to Aboriginal participants and Aboriginal and non-Aboriginal health care providers about an Aboriginal cancer research project conducted in Western Australia between 2006 and 2009.

Over the past 30 or 40 years, treatments for cancer have improved and these days many people who are diagnosed with cancer are successfully treated and live without cancer for many years after treatment.

Aboriginal Australians are diagnosed with cancer less frequently than non-Aboriginal people. However, Aboriginal people generally experience poorer outcomes from cancer compared with the non-Aboriginal population. Before this research was done, some reasons for these differences were known, including that Aboriginal people are not screened for cancer as much as non-Aboriginal people, so some cancers are diagnosed later at a more advanced stage. It was also known that Aboriginal people may be less willing to start or to get to the end of a full cancer treatment.

The purpose of this research was to find out more about the reasons for poorer Aboriginal outcomes following a diagnosis of cancer.

Topics covered by the research

The research found out about Aboriginal people’s experiences of cancer, including:

• Beliefs about cancer and ways in which beliefs affected how people sought medical care

• Experiences of the health system during diagnosis and treatment for cancer

• Experiences of communicating with doctors and other health professionals about cancer

• The use of bush medicine and traditional therapies for cancer The research also looked at what has been written about the beliefs and experiences of cancer amongst Indigenous people in Canada, New Zealand and the United States of America and compared them to Australian Aboriginal beliefs and experiences.

3. How did we do the research?

The research involved 30 interviews with Aboriginal cancer patients, or family members of people who had died from cancer, as well as some Aboriginal health care providers.

Those interviewed were men and women who came from various parts of Western Australia.

Information was also taken from many published papers and reports.

Approval was received from the WA Aboriginal Health Information and Ethics Committee before the research started.

Members of an Aboriginal Reference Group helped with advice throughout the research, including in the interpretation of information.

The researchers did their best to ensure the research was relationship-based, respectful, culturally appropriate and inclusive of Aboriginal people. They also made sure that the findings of the research were passed on and published so that what was learnt could lead to improvements in the health system and be used by others elsewhere. This information now contributes to the understanding of issues related to Aboriginal people with cancer, which is needed to improve Aboriginal cancer outcomes.

4. What did we find out?

4.1 Aboriginal people’s beliefs about cancer The research found lots of different views about cancer amongst Aboriginal people in WA, which is not surprising given the diversity of Aboriginal people across the State.

Some Aboriginal people have misunderstandings about cancer. The success of treatments for some cancers is not widely known. Some people incorrectly believe that cancer is always a terminal illness, or a ‘death sentence’. A fear about cancer means people may prefer to ‘not know’. They may avoid going to the doctor when they notice symptoms, or avoid cancer screening when they are well for fear of finding they have cancer. This is not necessarily different from the beliefs and behaviours of many other Australians and people from other cultures.

In some cases the medical system is seen to be all-powerful and thought to be capable of curing everything. Then, when someone dies or the cancer comes back they may be greatly disappointed in doctors and the medical system. Personal stories of a person’s bad experiences with the health system are shared in the community, and so people may decide not to have a check up when they notice something wrong, or not to have treatment for cancer.

Another belief that influenced people’s decisions was that getting cancer was seen as part of their fate or a result of a curse so there was no point in seeking Western treatment.

People reported feeling shame around cancer screening and diagnosis. Some Aboriginal community members fear that cancer is contagious and they could catch it or transmit it to others.

“...it was almost like you deserved it or there was definitely this sense of shame. It was whispered. If someone died of a heart attack you would say that, but... all this cancer stuff was a whispered sort of stuff.” (Research participant) Fatalism (or a belief that nothing you can do will make a difference), shame and fear are some of the reasons why people avoid cancer screening, ignore symptoms or avoid seeking treatment after they have been diagnosed. Some people fear having to leave their family, community and country and some believe that “when people go to Perth, they come back in a box.” Sadly, when people put off seeking help, their cancer may progress too far for it to be cured or have successful treatment that prolongs their life.

There is a need for more education about symptoms of cancer and the need for people to seek medical advice early, before the cancer takes a strong hold.

Cancer is widely feared across the Aboriginal population and these fears are also found amongst non-Aboriginal people. However, Aboriginal people are often diagnosed when their cancer is more advanced, so stories about successful treatment and survival are less common. Sometimes when people have cancer, they are reluctant to talk about it for various reasons of which one is feeling shame. This means that by keeping quiet they can miss out on the help and support that is available. When they are treated successfully and or even cured, their stories often don’t get told in the community so people don’t hear about alternative views of the cancer experience. This means that the negative view of cancer continues, with misunderstandings and fear persisting.

Through better information about successful cancer treatments and stories of survival, fatalistic attitudes and beliefs could be changed.

4.2 Aboriginal people’s experiences of cancer While some people reported helpful and positive experiences of the health system, others did not.

Transport, accommodation, the hospital environment, the cost of medicines and treatments and communication with doctors and other health professionals were areas which presented difficulties in dealing with cancer.

Transport The need to travel to Perth for treatment can pose a big problem for many patients.



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