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Aboriginal Australian understanding, beliefs and perspectives on cancer Shaouli Shahid Centre for International Health Curtin University.

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Presentation on theme: "Aboriginal Australian understanding, beliefs and perspectives on cancer Shaouli Shahid Centre for International Health Curtin University."— Presentation transcript:

1 Aboriginal Australian understanding, beliefs and perspectives on cancer Shaouli Shahid Centre for International Health Curtin University

2 A/Prof Sandra Thompson Aboriginal Reference Group: Leanne Pilkington, Dot Henry, Francine Eades, John Mallard, Gwen Rakabula, Michael Doyle Participants Academic and practitioner colleagues: Katie Thomas, Peter Howat, Brian Bishop, Tim Threlfall, Jude Comfort, Terry Slevin, Marisa Gilles, Moyez Jiwa, Kerin Young, Ann Flynn, Rosemary McGuckin and others Funding support: Cancer Council of Western Australia Acknowledgements


4  Increasing trend  Lower participation in cancer screening  Types of cancer (mostly fatal)  Preventable cancers  High under 65 years mortality  Diagnosed later/ advanced stage  Suboptimal treatment patterns Issues of Aboriginal Cancer in Australia

5 Cancer among Aboriginal Australians

6  Identify and explore the variations in understanding, beliefs and views of cancer, related services and treatment among rural and urban Aboriginal people in WA.  Explore the diversity in experiences and barriers of rural and urban Aboriginal people in WA with respect to cancer services and relevant treatment. Objectives

7 Methodologies Participants Aboriginal Participants (35) Health Service Providers (20) Research Area Urban Area: Perth, WA Rural Areas: Geraldton, Roebourne, Carnarvon & patients coming from other areas to Perth for treatment Methods of Data Collection o Documentary data collection o One-on-one in-depth interview

8  Approval from the Human Research Ethics Committee, Curtin University and Western Australian Aboriginal Health Information and Ethics Committee (WAAHIEC)  Aboriginal Reference Group was formed and is constantly involved in the research process  Data collection methods and strategies were approved by the Reference Group  Efforts were made to build trust and relationship prior to conduct the actual interviews  Informed consent was given by all participants  Interviews taped and transcribed verbatim Methodologies continued…

9 Data Analysis oLiterature summary and critical analysis oAn ecological, holistic approach was used for data analysis and interpretation oResults analysed thematically oNVivo software used to manage data

10 Findings Aetiology of cancer A lot of the participants regarded cancer as ‘hereditary’ or ‘passed through generations’ “I think it’s hereditary from my grandmother, on my mums’ side, because I think she died of cancer and all my aunties all died of cancer.” “…there’s that side of my dad’s family, so it might be genetic. I’m not quite sure, but it tended to be all my dad’s family passed away with cancer.”

11 Cancer is often related to the western invasion in the country and colonisation Why and how it matters? Stress and depression because of loosing power and part of their culture Changes in life-style Changes in food in-take Mixed race Alcohol introduction

12 “because of the power was taken away by the Government policies … lot of them were taken away and put in a mission…where…they were not allowed to practice their culture and law. They were taken away…all over Australia. And I believe that the land was very important….the environment, the land…that was all taken away…so, that causes a lot of stress…the stolen generation…people were in stress and depression …that sort of things can cause cancer….” “You talk to all these old Aboriginal people and the old fellows and they say, ‘In history, it is the food.’ They always tell you it’s the food we eat. ‘When we were living on kangaroo daily and all that, we were healthy.’ They lived to be 100 and some of them lived to be 120.”

13 “During and after colonisation, people were forced to mix and marry other races people. Some races are more prone to diseases like cancer. So, Aboriginal people got cancers through inter-marriage and inter-breeding of different people.” “…it was gold found in Halls Creek in the early 1900s. So, they built the towns…right there… strong cultures and law business for Aboriginal people in that area. So, the first thing they did they built the pubs,…and of course, …you know to show that Aboriginal people are supposed to be equal…they just go for drinking and they just drink too much. They didn’t know how to control the alcohol.”

14 Participants’ views on other causes Behavioural factors Smoking, alcohol, drug, lack of exercises “see our mum, she drank very heavy through all her younger years, but then when she become a Christian…Well, 20 years before she died… and she didn’t drink since then, but the consequences of that drinking would still damage your body. I think alcohol is a big factor to do with Aboriginal people with cancer-related illnesses.” “…because that was another comfort… drugs…. There are lots in the Aboriginal people now… there are drugs, drugs, drugs.”

15 Life circumstances: Working condition, Stress “He didn’t work in the mines. He was working for the trucking company that trucked it from Wittenoom to the port in Point Samson. So, he used to sleep on top of the big bales of asbestos. He was 17 years of age at that time. …With mesothelioma, it stays dormant in the body for 30 years, 30 to 40 years. So, dad was 17; we lost him when he turned 46, almost 30 years and that’s how it is.” “the stress…unable to cope with everyday pressures…” “at the time I was under a lot of STRESS!! Due to Work, Family and Marital issues.”

16 Environmental contamination “…there are changes out there, too. There’s plenty of this, plenty of that; fish is more multiplying by thousands, and prawns are getting three or four times bigger than normal.” “…because they are spraying the country for killing stuff that has been brought into the country. There is the Noogoora burr up north, and a couple of weeds that they had to kill and they sprayed all through the river system, polluted all our water. So that is in the system; it’s in the ground; it’s in the water. When it rains, the chemicals go into the river;”

17 Cultural beliefs Punishment, blame and curse “… there is always blaming each other in Aboriginal culture. If someone gets sick because they are in fight with another family. It might be true but a lot of time it’s not true. So, … people say I have become sick because of him… or through my marriage … the man with whom I have been living… something like that. It’s everywhere. “You would get sick and that unless you …got back in touch or made recompense or arranged to have it lifted… then you would not get better.”

18 Age is not a risk factor “No, not after my latest experience; no, I don’t. I used to think that it was, you were older and you got it, but now, like she was the same age as me. It was a real eye-opener.” “I don’t think there’s any real age group. Maybe they only saw older people; maybe young people died suddenly when they didn’t know enough.”

19 Cancer = Death vs. Treatment = Life “…when we hear that someone that we know have got cancer, we do really feel sad and shocked, because it’s a hurt. And … we end up having like a helpless situation that cancer is something that probably 95% of the time cannot be fixed.… But when I hear someone has cancer, I think, ‘oh no, they only got a little time!!!’ and I think, that is how a lot of the Aboriginal people think.” “I feel sorry for the other people who don’t really understand cancer. A lot of full-blood Aboriginal people get very angry with the doctors. They think the doctors are going to fix them up.” Perspectives and understanding of cancer

20 Fatalism “I don’t think that it’s something you can prevent. It’s just people are chosen. I don’t know of any way that you can prevent it really, because I mean you can go and have tests every six months, and one day you could just have it and it’s been there the whole time” If you’ve got it, it’s the eating of either the bone or an organ or something like that.…I don’t really care what any doctor says or any specialist says, at the end of the day you can take all the tablets you want, but I reckon that makes you more sicker than anything else. The cancer is going to kill you, anyway. That’s what I believe, because it’s like an acid.

21 Cancer is contagious “She actually couldn’t sit next to me. She sat across the room from me. She wouldn’t talk to me for a long time, because she was scared... maybe she thought that she could catch it” “They don’t actually call it cancer... maybe, a sickness, ‘I’ve got the sickness; I’ve got something’, but they don’t actually say I’ve got cancer.” “…the Big ‘C’ word” Don’t use the word ‘cancer’

22 Not differentiating cancer symptoms from other diseases due to other co-morbidity and lack of understanding Inadequate understanding of the biomedical terminology, consequences of cancer, treatment outcomes and after-effects “I didn’t know why my breast swelled up, you know; overnight, swelled up like that. I didn’t have a clue. I just came back because I was in such pain underneath…it could have been something else. I just didn’t know it was cancer.”

23 Conclusion The views of Aboriginal people regarding cancer were strongly influenced by their historical, socio-political and cultural context Most people linked cancer with death and mentioned that as an important factor for not seeking help and treatment Lack of understanding of the biomedical aspects of cancer, related treatments and consequences

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