Over the past two years, Dr Diana MacKay and Sian Graham from the Menzies School of Health Research in Darwin have travelled extensively to interview First Nations women about their experiences of diabetes in pregnancy (DIP).

For these researchers, listening to the stories of mothers who have experienced DIP, including gestational diabetes (GDM) and pre-existing type 2 diabetes, is a critical first step in addressing this problem in both urban and remote Aboriginal and Torres Strait Islander communities in northern Australia. 

“It’s been wonderful to get on the ground and hear perspectives from women and the people around them supporting them in their communities,” said Dr MacKay.

“We don’t often take the time to really consider all of those family and community aspects of someone’s health and wellbeing, in what are often rushed medical consultations.

“This has been a great opportunity to hear first hand about the issues and supports that are important for the health of Indigenous women and mothers who have had DIP.”

During 2020 and 2021, Dr MacKay and Ms Graham conducted 22 interviews with First Nations community members and health workers in urban and remote locations in the Northern Territory.

This research project, supported by CRE HiPP, is called ‘Supporting a more inclusive model of care: Incorporating the voices of women and their families in care during and after a pregnancy complicated by diabetes.’ 

It sits within the Diabetes Across the Lifecourse: Northern Australia Partnership (the Partnership), led by Professor Louise Maple-Brown from the Menzies School of Health Research, who is supervising this research with Dr Renae Kirkham. 

The study is led by Dr MacKay, who is a researcher and clinical endocrinologist. It is guided by consultations with an Aboriginal and Torres Strait Islander Advisory Group chaired by Ms Graham, who is a researcher and First Nations woman born and raised in Darwin.

Previous research by Dr Kirkham and Ms Graham has found that women often had a limited understanding of DIP and its management.  This project aims to listen, deeply and carefully, to women’s experiences of diabetes in pregnancy, in order to find out more about the types of interventions that could help them to live healthier lifestyles and mitigate this widespread disease. Of particular interest are the supports accessed by women before, during and after their pregnancy, and how these can be enhanced.

First Nations  people experience significantly higher rates of diabetes than the non-Indigenous population. In 2017-2018 around 13% of Aboriginal and Torres Strait Islander mothers who gave birth were diagnosed with GDM, and this increased to 32% for women over 40. Pre-existing diabetes in pregnancy is more than 10 times as common among Aboriginal and Torres Strait Islander mothers than in non-Indigenous women, with rates concerningly increasing over time.

DIP can lead to serious health complications for mothers and babies during pregnancy, at birth and after birth. GDM also carries an increased risk of type 2 diabetes developing in mothers, as well as in their children later in life. 

“Diabetes is such a silent disease and can be hard to talk about and understand. So we discussed what diabetes is and what are the competing factors that affect you when you have diabetes and are trying to manage it,” said Ms Graham.

They also covered family and community support, healthy weight, preconception care and breastfeeding. 

The researchers are currently in the process of feeding their preliminary findings back to the participants and community members, an important part of building stakeholder engagement and involvement, before finalising the data analysis. These preliminary findings indicate women access a range of supports, although there are multiple opportunities for these to be enhanced. More detailed findings will be released after data analysis is finalised.

Later this year they plan to move onto the next phase of the project, which involves integrating the findings from their formative work to co-design healthy lifestyle interventions with women, health professionals and community members.

They are hoping to start implementing strategies to improve the health and wellbeing of women with DIP next year. It is too early to say what these strategies might include, as there is still more process involved. The researchers are excited about the opportunity to workshop options with participating communities.

“We want to keep things really open at this stage,” said Dr Mackay. 

Both researchers are proud that they are building on a body of qualitative work exploring First Nations women’s experiences of DIP, and their preferences for programs to help improve their reproductive health. 

Ms Graham has in fact been engaged in consultations with the same Aboriginal and Torres strait Islander communities around diabetes since 2011.  

“As researchers, I think it’s so important that we continually build these really strong relationships with our communities. These partnerships are so important as a link between communities and research,” she said.

“It’s hard going, but we need to continue to work with the same communities, because that’s how you’re going to build rapport and good relationships.

“As a researcher, I love going back to these communities and the women that I’ve followed through their pregnancies.

“These women have given me the opportunity to share those special moments with them, and now, as I continue to go back and watch their kids grow, it makes my job worthwhile.”

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