NACCHO Aboriginal Health and #RHD @RHDAustralia and @MenziesResearch release an educational short film on rheumatic heart disease in pregnancy

“I chose to help create this film because I wanted to help young women living with RHD and make sure they can access information about contraception, pregnancy and planning for a baby.

What is the take home message from the film?

“The film points out the main needs of a young woman living with RHD to help care for herself, her heart and her baby. The film re-assures young women with RHD that they can have a normal healthy pregnancy; they just need to take extra care of themselves.”

RHDAustralia sat down with one of the directors, Ms Kenya McAdam, a 21 year old Jaru and Kira woman from Halls Creek, Western Australia currently living in Katherine, Northern Territory.

See Kenya’s full story PART 2 Below

For Kenya this film was deeply personal and an intimate reflection on life as a young woman living with RHD. Kenya developed RHD at 15 years old and required open heart surgery within 3 months of diagnosis. Since that time, Kenya has worked with RHDAustralia to raise awareness about this 100% preventable disease.

The target audience for this film is girls and young women from ages 13 to 20s who have mild to moderate RHD

You can find these films and other important resources on the RHDAustralia resource page.

NACCHO and AMA support RHD Prevention

With Aboriginal and Torres Strait Islander Australians still 20 times more likely to die from RHD, the AMA’s call for firm targets and a comprehensive and consultative strategy is welcome. We encourage governments to adopt these recommendations immediately.

“As noted by the AMA, it is absolutely critical that governments work in close partnership with Aboriginal health bodies. Without strong community controlled health services, achieving these targets for reducing RHD will be impossible.

While this is a long term challenge, the human impacts on Aboriginal and Torres Strait Islander communities are being felt deeply right now. Action is required urgently.

NACCHO is standing ready to work with the AMA and governments to develop and implement these measures. We have to work together and we have to do it now.”

National Aboriginal Community Controlled Health Organisation (NACCHO) Chairperson Matthew Cooke pictured above at Danila Dilba Health Service NT with AMA President Dr Michael Gannon

NACCHO Aboriginal Health #RHD : AMA Report Card on Indigenous Health highlights need for Aboriginal community controlled services

The RHD Story

A new film written and directed by a group of Northern Territory Indigenous women follows the story of Tess, a young women whose boyfriend, Jamie, reveals his desire to start a family.

While surprised and happy, she’s not told Jamie about her rheumatic heart disease (RHD).

She’s not sure how her heart disease will affect her pregnancy or if she can have a baby at all. Looking for answers, Tess turns to her best mate, her mum and the local health clinic for guidance on what to do next.

Will they have the answers?

The film will be launched in Bagot Community, Darwin on 6 October. Sharing a Heartbeat is freely available in English and Kriol with plans to make the film available in more Indigenous languages.

You can find these films and other important resources on the RHDAustralia resource page.  Additional print resources are linked with the English and Kriol through the resource page on our website.

By embracing two-ways learning and a spirit of cross cultural cooperation, RHDAustralia and Menzies School of Health Research are proud to announce the completion of the first ever   educational short film on rheumatic heart disease in pregnancy entitled Sharing a Heartbeat.

Hi Kenya, why did you decide to get involved in the creation of this film?

“I chose to help create this film because I wanted to help young women living with RHD and make sure they can access information about contraception, pregnancy and planning for a baby.

What is the take home message from the film?

“The film points out the main needs of a young woman living with RHD to help care for herself, her heart and her baby. The film re-assures young women with RHD that they can have a normal healthy pregnancy; they just need to take extra care of themselves.”

From a personal perspective, the film answered my unanswered questions. For other young women with RHD, I think it will help them understand more about approaching pregnancy.”

Having Kenya involved from the very start was central to ensuring the film was produced from a patient centric, woman centric and gender sensitive standpoint. But of equal importance was making certain it was developed to be culturally appropriate and safe. This was accomplished by including Indigenous women throughout the process, whether in the design, development, testing or making of the resource.

One of the key contributors alongside Kenya was Noeletta McKenzie whose daughter, Raychelle, was diagnosed with RHD four years ago at the age of nine. Noeletta’s been involved in numerous community development projects in Maningrida and Darwin and was quick to answer a call for assistance with the making of the film. “I saw the advertisement on the RHDAustralia Facebook page and enquired about how I could support with the development of the resource.” Noeletta helped to co-write the film and to guide and consult the actors on set.

When asked about why it was important to have Indigenous women involved in the making of the film she told us “I feel that as the resource is targeted at Indigenous young women, we needed to ensure that they were featured. It’s also about cultural safety and cultural context, educating our young women in our way.”
Leading by example, Noeletta is instilling these qualities into her daughter as well. When asked if the film has helped her daughter learn more about her RHD, Noeletta said “She’s well aware of the disease and how as a young woman it has affected her life. She would like to be a part of an advisory group to share her experience and pass on her knowledge.”

Acknowledgements

There were many people involving in the making of this film and we would like to thank the actors, directors, writers, and producers for producing such a well-crafted and meaningful film that is educational, culturally responsive, collaborative and meaningful. This film was produced by RHDAustralia and made possible with a grant from NTPHN.

Background

Literature reviews and content surveillance of health promotion material from Australia and New Zealand shows that there is very little information available for girls and women who have RHD. A recently completed study conducted by the Australian Maternity Outcomes Surveillance System (AMOSS) has shown that for Indigenous women in Australia, there are many misconceptions around rheumatic heart disease (RHD) and how it can impact their pregnancies.

Films directed by Indigenous women on any content are rare. Rheumatic heart disease is up to twice as common in women, and tends to affect women during their child bearing years. There is a 30-50% increased cardiac workload in normal pregnancy.

The target audience for this film is girls and young women from ages 13 to 20s who have mild to moderate RHD.

Part 2 Rheumatic heart disease a blight on Indigenous population

When Kenya McAdam wasn’t bedridden as a child, she would drag herself to school and sit in the classroom. “I wouldn’t move,” says the 21-year-old childcare worker, whose current good health is proof that she has survived rheumatic heart disease.

From The Australian

But Australia has a high level of the disease, which is caused by a bacterial infection of the throat and skin and is common in poverty-stricken nations.

Some of the nation’s leading medical researchers are meeting today in Darwin to create a plan to wipe out the life-threatening condition, which disproportionately affects indigenous Australians.

Pediatrician Jonathan Carapetis, who has led research efforts for 20 years, says young people such as Ms McAdam are up to 122 times more likely to contract the disease than non-indigenous youngsters. And it affects one in 43 indigenous people living in ­remote and rural Australia.

“It’s entirely preventable, yet the rates of this devastating condition among Aboriginal and Torres Strait Islander people are among the highest in the world,” says Professor Carapetis, director of Perth’s Telethon Kids Institute. “It should no longer exist in Australia.”

Rheumatic heart disease can result in permanent damage to the heart if it is not treated with antibiotics. It is caused by a bacterial infection of the throat and skin, which can result in heart failure and other complications, including stroke, without antibiotic treatment.

Ms McAdam’s life was saved by heart surgery to repair leaky valves after a cardiac arrest and years of breathlessness. “My mum thought that only older people suffer from heart attacks,” she said.

Her younger brother and sister must endure a painful penicillin injection every month for up to 10 years to prevent further infections.

But many affected indigenous youth fail to receive more than half their monthly penicillin requirement. More than 2600 ­people in the Northern Territory have rheumatic heart disease, while sufferers in Western Australia’s remote Kimberley Region are recorded as dying at an average age of 41.

Professor Carapetis said research institutes around Australia were collaborating on ways to prevent and treat streptococcus infections that lead to the disease, such as long-acting penicillin or an antibacterial vaccine.

Heather D’Antoine, from Menzies School of Health Research’s Aboriginal Programs, said today’s meeting to discuss lifesaving initiatives “can’t come soon enough”.

“The impact on our community is devastating; children must travel for heart surgery; young adults live with premature disability; and pregnant women face high-risk pregnancies,” she said.

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