In our podcast, The Screen, we go behind the scenes to bring you more information about our program, breast screening, and breast cancer. We speak with BreastScreen staff, radiographers, nurses, and other clinical experts, as well as the community, to bring you topical information so that you can make the right choice for your health.
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In this episode, we delve into a large project to address breast under-screening in Aboriginal communities. BreastScreen Victoria, the Victorian Aboriginal Community Controlled Health Organisation, and the Victorian Aboriginal Health Service collaborated with local Aboriginal health organisations to bring breast screening to more Aboriginal women.
Our mobile screening service visited seven Aboriginal Community Controlled Health Organisations across Victoria. Women who screened received a screening shawl created by a local Aboriginal artist to help them feel culturally safe.
The audio was produced by Stephanie Van Schilt of Audiocraft.
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Mafi Kailahi (00:02): We'd like to begin this podcast by acknowledging the traditional owners of this land on which we meet today, the Wurundjeri people of the Kulin nation, as we pay our respects to Elders past and present and to the Elders of all the lands this podcast reaches.
Tarni Jones (00:18): All women are afraid of certain things when it comes to getting health checks. Indigenous women, it's a different story in a lot of cases, particularly if you've been brought up on Country in community. It's a lot more of a closed situation. You rely on your Aunties, you rely on the Elders. They are your Aunties, your mothers, your sisters, your grandmothers, to give you advice. Taking you out of that situation and putting you into a non-Indigenous situation, when it comes to the actual screening and such, can make a woman very anxious. The anxiety will take over. I've seen women flee clinics. Actually sitting, they get up and leave because the anxiety has taken over.
Mafi Kailahi (01:08): That's Tarni Jones.
Tarni Jones (01:10): I'm a proud Guugu Yimithirr woman from the Cape York area.
Mafi Kailahi (01:15): Tarni was a participant in the BreastScreen Victoria and the Victorian Aboriginal Community Controlled Health Organisation's recent mobile screening and shawl project conducted in partnership with eight Aboriginal community controlled organisations across the state.
Tarni Jones (01:31): I received the letter in the mail last year. I turned 50 in October a year ago, and I made the appointment at the local hospital that we were told to go to in the letter, and I cancelled the appointment. I was too nervous to go. My grandmother had died of breast cancer at the age of 47 and because it then becomes a hereditary issue, I was too afraid to find out the answer. I was afraid that it was going to say "yes".
Mafi Kailahi (02:07): Aboriginal women have lower than average breast screening participation rates in Victoria for a number of complicated reasons. Generally, Aboriginal women have reported health professionals who lack cultural safety knowledge and logistical barriers as negative impacts on screening. This is something we've been working to change here at BreastScreen Victoria to ensure Aboriginal women feel more comfortable, respected, and safe during the breast screening process.
Tarni Jones (02:35): In these cases, like with the pink van and all the women, you don't want to flee. You're happy, you're supported, you're coming in. It's not just the breast screening now.
Mafi Kailahi (02:50): You're listening to The Screen, the podcast series from BreastScreen Victoria. This is Mafi Kailahi. I am a Wiradjuri woman from central west New South Wales, based here at VACCHO. In this special episode, we'll look at the ways we've been working with Aboriginal communities throughout Victoria to understand why fewer Aboriginal women are accessing free breast screening services. We'll talk about the importance of community-led initiatives that are driven by the needs of Aboriginal women and steered by Aboriginal organisations, and how community led projects can improve breast screening experiences for Aboriginal women. One such initiative took place in October and November last year when BreastScreen and VACCHO went on the road. Our two hot pink mobile screening service vans visited seven Aboriginal Community Controlled Health Organisation sites to conduct free breast screens to women aged 50 and over. As part of this collaborative state-wide project, Aboriginal women were offered cultural screening shawls to wear during their mammograms. Each shawl was created specifically for each site.
Lisa Joyce (04:02): Hi, my name is Lisa Joyce. I'm a Health Promotion Officer at BreastScreen Victoria.
Susan Forrester (04:07): I'm Susan Forrester. I'm an Executive Manager at the Victorian Aboriginal peak body for health, VACCHO.
Mafi Kailahi (04:12): Susan and Lisa worked together to lead this incredible project that they started developing over two years ago.
Susan Forrester (04:19): It was the end of 2017. We met a woman called Ngahina Waretini and she was running an incredible project called "Nan, Aunty, Mum", and it was a way to bring a cultural perspective and leadership into screening. Ngahina knew that there was a cloak that was made with Auckland BreastScreen for Maori women. It's just a great idea, number one, to feel culturally safe and to be culturally visible. So we wanted to take that idea a giant step up.
Mafi Kailahi (04:51): Aboriginal women are what we consider an under-screened group, meaning they have lower participation rates than the general population. Currently, Aboriginal breast screen participation rates sit at 34.4%, well below the state average of 54%. We're always looking for new ways to make breast screen services more accessible to diverse Aboriginal communities.
Susan Forrester (05:16): We'd had a pilot already run in partnership with Victorian Aboriginal Health Service and it had great legs. It was reviewed, it was also evaluated by Deakin University and we knew we had a very, very strong project that we wanted to take further.
Lisa Joyce (05:31): Yeah, so it was really great, when I came on, this trial had already happened and it had already been really successful. They ran the trial with 14 Aboriginal women at St Vincent's BreastScreen and as Susan said, we thought that this model and this shawl was a way to expand the service even further and increase breast screening in the whole state of Victoria for Aboriginal women.
Susan Forrester (05:53): We didn't realise all the obstacles that we were going to face. Things like what material do you use, what does it look like, what size should it be? How will you incorporate design? How will you get the design, how will you work and respect the design? How will it affect the mammography-
Lisa Joyce (06:11): Yeah, the machine.
Susan Forrester (06:13): The machine. We actually worked for quite a long time. We were really lucky that we had a beautiful woman called Andrea Casey who works at Cancer Council Victoria, who is a dressmaker.
Lisa Joyce (06:25): Yeah.
Susan Forrester (06:26): So we're able to try lots of different prototypes, use lots of different material and then rope in all of our friends who were working around the buildings with us, and get people to model and try it on, that the weight of the material, the feel of the material, how was it going to work with your breasts, how are you going to feel safe in it?
Lisa Joyce (06:46): Yeah, for sure. Then once we had the design after all the negotiations and the consultations that went in with the design, we had to work out how we were going to make each shawl special to each area. So then the artwork comes in, which is incredible. The Aboriginal organisations on the ground that we partner with actually went out and ran either competitions or approached artists that they knew in the community who could contribute this amazing artwork that then got printed onto the shawl. So what we've ended up with is nine different shawls which all tell different stories that are all local to a specific area.
Susan Forrester (07:20): The story of the artwork was just as important as the artwork itself, and the fact that each community decided who was going to represent them. There's a lot of pride in this project and it's really hard to describe audibly, but there is a lot of pride that happened in this project.
Tarni Jones (07:43): Putting the shawl on. That was marvelous.
Mafi Kailahi (07:46): That's Tarni, again.
Tarni Jones (07:48): The artwork is absolutely amazing, but it's not just the artwork, it's what it means. You put it on and it's like having your Aunties from long ago give you a great big hug. They're holding you and saying, "It's okay. We're here with you to do this." It wasn't available to them but it is for us, because that speaks again of Country, of connection with Country. With a lot of the symbols in Indigenous art, they are definitely referring to Country, to women, and to men. It depends on the symbol, with the shawl these symbols are identifying with women, with our culture, with our Indigenous history, with Country. That's what makes it so special.
Mafi Kailahi (08:45): The shawl is a really big part of this project. It's not the only part. Cultural safety was of the utmost importance to BreastScreen and VACCHO going this.
Lisa Joyce (08:56): This project really came down to BreastScreen being flexible with our business model, and BreastScreen really had to come to the party and be willing to sort of change what we're used to, in order to better meet the needs of the communities.
Susan Forrester (09:06): Yeah, VACCHO actually provides cultural safety training. So everyone in the org, and this is a nod to the CEO. So from the CEO to the receptionist, everyone was trained here at BreastScreen and we had our team come over and spend, I think, half a day with everyone.
Lisa Joyce (09:22): Yeah. Cultural safety training is so important for any mainstream organisation. You just can't underestimate how important it is and, I really liked how Susan mentioned, every level, so not just the people that are working on the BreastScreen van face to face with community, but the people that are behind the scenes scheduling the appointments or organising things. It's so important that everybody that worked on this project from BreastScreen side had a really good understanding of why the project was happening, and that really gets covered in the cultural safety training when you learn about, in order to have that good understanding, you need to have a good understanding of Aboriginal history in this country and issues that Aboriginal people face accessing health services. It's like there's just so much, and that training is just so valuable and yeah, we're really lucky that VACCHO came and delivered it to us, and we'll definitely keep doing that in the future.
Mafi Kailahi (10:09): Before visiting the eight sites, the team spent six months carefully planning to ensure the project was a success and most importantly, community-led.
Susan Forrester (10:18): There's a saying, Aboriginal health is everyone's business, but it needs to be grounded in the leadership of First Nations people. We need to be able to make space for the knowledge, the self-determinance, the history of colonisation, all of the barriers that come into that term "access and inclusion". So if you want to work in a self-determining way, we have to walk beside, we have to ... you know that term "walk beside", like when we need to listen in the first instance. I think that's been a very big aspect of this project for Lisa and I. We're very passionate, we have great ideas, but if we don't listen to what's going to work and we don't ask when the right time is and we don't ask what people need individually, it's not going to go anywhere. It's a big thing to actually listen, to listen first, come with your idea and listen first and then be flexible and adaptable to what will work on ground.
Lisa Joyce (11:17): The main reasons that Aboriginal women don't screen is that they don't feel culturally safe at mainstream health services and mainstream breast screen clinics. There's also, yeah, lack of cultural understanding at mainstream clinics. There's also a lack of education and awareness in Aboriginal communities about breast screening and also just a lack of access.
Mafi Kailahi (11:34): BreastScreen and VACCHO worked closely with the eight ACCOs and ensured the project was informed by communities.
Susan Forrester (11:41): The Aboriginal community controlled organisations that we partnered with are Dhauwurd-Wurrung Elderly and Community Health Service in Portland, the Winda-Mara Aboriginal Co-Op, the Gunditjmara Aboriginal Co-Op, the Ramahyuck District Aboriginal Corporation in Morwell, the Kirrae Health Service, the Wathaurong Aboriginal Corporation, Rumbalara Aboriginal Corporation, and Ramahyuck District Aboriginal Corporation in Sale.
Lisa Joyce (12:07): We trained up local staff on the ground to work on the van, to be that familiar face for community.
Georgie Taylor (12:13): I'm Georgie Taylor and I'm a proud Gunditjmara woman. As I said, I'm here first in the morning and last to leave.
Mafi Kailahi (12:22): Georgie is a dedicated Aboriginal health practitioner based at Gunditjmara. Georgie assisted the mobile screening van visit to her health service.
Georgie Taylor (12:31): Yeah. Just getting the respect from the people out in the community now makes my heart jump really, because I'm never called Aunt and now they always called me Aunt, and I go, "Okay." It's a real big thing in the Aboriginal community, especially then I know that I'm doing my job properly. They're respecting me. They can talk to me about anything and know that I'll deal with what if they needed help or anything like that.
Mafi Kailahi (12:59): Georgie witnessed firsthand just how important the shawls were for women attending screenings.
Georgie Taylor (13:05): The word is getting out about the shawls because of the one that done the design, because she's a local girl and people know her and have seen her paintings, and they can connect to it. We're nearly through the whole 50 shawls already. They just go, so something's working.
Mafi Kailahi (13:24): She also knows the fears Aboriginal women face when it comes to attending a breast screen clinic, and how going onto country helps increase accessibility.
Georgie Taylor (13:34): We're having trouble getting them to the mainstream clinics. We're here as The Standard said, that it's on Country and people know that if they're down here, it's a safe place. They just, yeah, they can come have a yarn and it's no pressure. So the word's getting out from Monday that we're getting more Aboriginal people in now because they think if someone else has had it and give them the good word, they're willing to come.
Mafi Kailahi (14:09): Tarni Jones, who understands the importance of community support, completely agrees.
Tarni Jones (14:14): What changed my mind and made me come here to do this? I started coming to Gunditjmara and to the clinic, and the women, they're just so supportive. My fears just flowed out of me. I realised I was being ridiculous. I have to look after myself for my children, for their children. I'm supposed to set an example now as a 50-year old Indigenous woman, I need to set an example for the younger ones and say, "Don't be afraid to do these things." So they helped me. I came yesterday and I just, yeah, couldn't wait, actually. It was really wonderful, the support I was receiving from the health workers and all of those involved in the Gunditjmara Co-Op.
Mafi Kailahi (15:20): Speaking with Aboriginal health practitioners in a community controlled environment meant that Tarni felt open and safe to discuss all matters of health.
Tarni Jones (15:29): This is what needs to happen. When the women come in, we need to keep them here. We need to hold them and say, "It's okay, you're in a safe place. Now, while you're here, let's talk about this. Have you had this check done?" That's when you get these women feeling more confident rather than feeling vulnerable. This is something that needs to be done. Gunditjmara has done amazing things in health and in community. It is the safety issues. Not wanting to bring up history forever and a day, but there's no denying that there is a history with Indigenous women where safety was thrown out the window, where our cultural borders were broken. They have been rebuilt and they are still being rebuilt. This would just add to that, to that feeling of our own space, on Country, do something on Country and it's a much better result.
Mafi Kailahi (16:44): Tarni Jones was one of 160 Aboriginal women screened across the eight partner ACCOs, a huge turnout for an under-screened group. Over 80% of the women screened were either first-time or lapsed screeners. But as Susan and Lisa remind us, it's not just about the numbers.
Susan Forrester (17:04): We know that the evidence base across cancer screening is if you screen once, you're most likely to screen again. The other unique aspect of the shawl project was that we gifted each shawl to every woman that participated. So they'll use it again to come back or share it with their family members to screen.
Lisa Joyce (17:26): Yeah. Obviously the point of breast screening is to detect breast cancer early while it's smallest and most easily treated. So detecting breast cancer at these visits is actually a positive thing even though there's so many negatives that come with it. I think the awesome thing is that some women from communities that did get called back, they became real leaders in the space and posted about it on their own social medias and talked to the community about, "I've had this breast screening and I've been called back, and I'm so lucky that the BreastScreen van came to my service. I'm so lucky that my health service encouraged me to go."
Susan Forrester (17:56): Because you came through the Aboriginal Community Controlled Health Org that is yours locally, you knew that you would be supported through the journey.
Lisa Joyce (18:06): Women were literally driving to their family members' house and going to pick them up and bringing them to have a breast screen. I think that level of community involvement was just so great. Communities are really proud that they were running this project, and they wanted to make sure that every woman in their community got a screen when she had to. That was such a good outcome.
Susan Forrester (18:25): My favourite little story is going down to Warrnambool, to the Gunditjmara community, and the Aboriginal health workers and practitioners were heavily involved in the local promotion. I remember getting down to the site, seeing the amazing van, seeing the buzz happening, a big women's day happening, and seeing a couple of ... and I won't name them ... Aboriginal health practitioners with the shawl still on after screening, racing around town like superwoman. That was the best for me.
Lisa Joyce (18:54): Yeah.
Susan Forrester (18:54): I love that. We've had surveys and got a lot of feedback, and Lisa and I were looking through it all, and the words that popped were "culturally safe", "visible", "protected", "proud"-
Lisa Joyce (19:08): Yup.
Susan Forrester (19:09): And "beautiful". So I think that, we're thinking, this might be now the Beautiful Shawl Project and that's just fantastic. Just says it all.
Mafi Kailahi (19:23): You've been listening to The Screen, a podcast from BreastScreen Victoria. If you need to know more about screening or this has brought up any questions for you, you can give BreastScreen Victoria a call on 13 20 50 or jump online to breastscreen.org.au for further information. On behalf of BreastScreen Victoria and the Victorian Aboriginal Community Controlled Health Organisation, I'd like to thank all of our partners on this project and all of the guests for speaking with us, and to you for listening.