A team at RHDAustralia are taking information about the heart disease to grassroots level after they received funding support to put valuable information in the hands of girls and women so they can better understand and look after their own health.

The funding from the Northern Territory Primary Health Network will enable Associate Professor Suzanne Belton and researcher Kylie Tune to develop resources for Indigenous girls and women focusing on fertility and pregnancy. Other resources for midwives about the management and care of pregnant women with RHD will also be developed.

This is significant as there are currently no existing community-based resources available to girls and women in the community about RHD and how it can affect their health and that of their unborn babies.

The resources will be available from July this year and distributed through Indigenous networks and primary health care contacts.

This research translation was informed by a National Health and Medical Research Council study, led by the Australasian Maternity Outcomes Surveillance System (AMOSS). AMOSS addressed a critical need to find out more about serious disorders in pregnancy and to support the translation of research findings into policy, clinical guidelines and education resources.

The study examined RHD in pregnancy, the researchers collected and analysed the experiences of eight Indigenous women at different stages of pregnancy with RHD and their families.

“We met women who were telling us that they didn’t understand their disease or the care they were receiving,” said Assoc Prof Belton.

“They had no idea what to expect; they just tried to follow medical advice. There was also the language barrier, as most health staff do not speak Aboriginal languages.”

“These are women whose lives are already complicated; they have so many competing demands – their families, no food in the cupboard, and sometimes domestic violence. They also have a different view of health, pregnancy and birth.”

Midwives and doctors did not always consider the symptoms of a sore throat and joint pain – key symptoms of acute rheumatic fever (ARF), and the cause of RHD – as being a precursor to something more serious.

“The diagnosis of ARF may be missed or increasing breathlessness in pregnancy which can lead to serious health consequences,” said Ms Tune.

“We’d have women end up in hospitals sometimes interstate, away from their families, away from home, feeling isolated and confused, which is not ideal.”

“Midwives have been very supportive of receiving more education about ARF and RHD and we are working to include this material into university education programs around Australia.”

To learn more about our research into heart disease, click here.