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RHD Resouces

Translating research: how do women understand RHD in Pregnancy?

The Australian Maternity Outcomes Surveillance System (AMOSS) RHD in Pregnancy study has shown that for Indigenous women in Australia, there are many misconceptions around rheumatic heart disease (RHD) and how it can impact their pregnancies.

In response to these findings, RHDAustralia produced an educational film designed to give young women, their partners and families information on RHD in pregnancy.  Sharing a Heartbeat is a short film about love, relationships, family formation and pregnancy, and living with rheumatic heart disease. It’s an evidence-based, culturally sensitive  film developed, written and directed by Australian Indigenous women.

Research Assistant: And is it bad to have rheumatic (heart disease)?  Does it even matter?

Debbie*: I don’t know really how I can stop my baby getting that heart disease.

Research Assistant: Is it possible to stop?  

Debbie: I don’t know.

Research Assistant: OK.  Is (RHD) a problem?  Is it a serious problem?  Is it a worry? 

Debbie: No.

RHDAustralia sat down with Associate Professor Suzanne Belton, one of the researchers from the AMOSS study and executive producer of Sharing a Heartbeat, to discuss the study and the film. Suzanne is a medical anthropologist and a midwife.

“During the study, it became very clear that despite having contact with the health system since they were children and again as they were growing up, (these women) knew very little about their disease or what that meant for their pregnancy and how they could take care of themselves,” Suzanne told us.

Why do you think that is?

One reason is cultural and language differences. Biomedical language and the healthcare system aren’t set up to deal with the large cultural and linguistic differences that exist between Indigenous patients and a largely white health workforce. There are a limited number of translators and even then the translators may not have knowledge of medical vocabulary to translate correctly.

The second is that healthcare can be quite compartmentalised so when you have a disease that begins in childhood and continues on into adolescence and then adulthood, you may have patients that only hear the paediatric side of the story. As they grow up they aren’t given the information that’s relevant to their sexual and reproductive health. There’s a disconnect in the continuity of care that’s needed as these children transition into sexual maturity.

What other stories have you heard from mothers and children?

I had one mother tell me “My daughter came to me and said ‘because I have RHD, you probably won’t have any grandchildren.’”

I just found that really sad. Here was this teenage girl with RHD who thought she’d never be able to have a family. She assumed her heart was too damaged but often that is not the case as many women can and do go on to have healthy babies.

You were the executive producer on the film Sharing a Heartbeat. Can you tell us about why you created a film that focussed on RHD in pregnancy?

There is a need for resources that speak to Indigenous girls and women about their reproductive health in their language and that they reflect their realities. We know that the Northern Territory has one of the highest rates of teenage pregnancy in Australia and is the epicentre for RHD. If you’re going to do health promotion for girls and women, then you’ve got to join these two ideas together. I wanted to make sure the information about their fertility was presented in a manner that could be entertaining and informative. And because a film can be adapted into any language, it’s a great resource to develop.

Can you tell us a bit about how the film came together?

Through a Preventative Health Grant funded by Northern Territory Primary Health Network (NT PHN), we were able to access some funds to get started. I reached out to Kenya McAdam and because she’s a 21-year-old Indigenous woman with RHD, she is the target audience. But because she can only perhaps give the view of a young person with RHD, I thought it was really important that mums and aunties, who are the ones that care and support young people, tell their stories too. So with the help of women like Noeletta McKenzie, we were able to get a  different perspective that really brought a high level of knowledge and firsthand experience to the table.

There are around 500 girls and women between the ages of 15 to 25 who are living with RHD now in the Northern Territory. It is likely that they all need to hear this health information. 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.  Young people aged 5 – 14 years are at highest risk and up to 122 times more likely to contract the disease than non-Indigenous youngsters. Almost all cases of rheumatic fever recorded in the NT between 2005 and 2010 were for Aboriginal and Torres Strait Islander people (98%). It is deemed an entirely preventable disease of poverty.

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 films through the resource page on our website.

Suzanne’s most current research around RHD in pregnancy can be found below.

*The names of research participants have been changed to protect their identity.

Belton, S., S. Kruske, J. Sherwood, G. Vaughan, K. Tune, L. Jackson-Pulver, M. Peek, C. McClintock and E. Sullivan (2017 - accepted). "Rheumatic Heart Disease in Pregnancy: A qualitative study." Australia and New Zealand Journal of Obstetrics & Gynaecology.

Suzanne Belton, J. S., Michael J Peek, Geraldine Vaughan, Elizabeth A Sullivan (2016). "‘Yarning about that heart problem’ RHD " Obstetrics & Gynaecology Magazine 18(4): 65-66.

Mitchell, A., S. Belton, V. Johnston and A. Ralph (2017 - under review). "“That heart sickness”: young Aboriginal people’s understanding of rheumatic fever." Medical Anthropology.

Mitchell, A., S. Belton, V. Johnston and A. Ralph (2017 - accepted). "Transition to adult care for Aboriginal children with rheumatic fever: a review informed by a focussed ethnography in northern Australia." Australian and New Zealand Journal of Public Health.

Vaughan, G., K. Tune, M. J. Peek, L. Jackson Pulver, B. Remenyi, S. Belton and E. A. Sullivan (2017 - submitted). "Challenges of surveillance in an Australian study of rheumatic heart disease in pregnancy." Global Public Health.