NurtureNextGen co-leads, Dr Erin Turbitt and Lizzie Callinan recently won the UTS Faculty of Health Research Impact and Translation Competition. Their 3-minute pitch made a convincing case for the project’s potential for real-world impact supporting parents of children with genetic neurodevelopmental conditions. They were awarded $2,000 to further the project.
From ‘Bad News’ to Hope
When Lizzie’s daughter Greta was not quite two, a paediatrician suggested she might have a rare chromosome condition. The potential diagnosis was delivered as “bad news,” leaving Lizzie feeling that their lives were about to be shattered. Greta was later diagnosed with mosaic Down syndrome. Today, she is nine years old, full of energy, curiosity, and pride in being, as she says, “a homie with an extra chromie.” But the way that diagnosis was delivered left a lasting impact.
Lizzie’s experience is not unique. Neurodevelopmental conditions affect around 17% of children, and with the growing use of genetic testing, more parents will face the challenge of making sense of a genetic diagnosis. Too often, these diagnoses are framed as a list of everything that might go wrong, increasing distress and disempowerment at a critical time.
Introducing NurtureNextGen
NurtureNextGen is changing that narrative. Co-led by Erin and Lizzie, the project is co-designing a digital tool that provides balanced, strengths-based, and emotionally attuned information following a genetic diagnosis. This work is deeply collaborative: a Consumer Advisory Group of ten parents and advocacy organisations has been involved from the start, ensuring the tool reflects lived experience and meets real needs. Co-design workshops with up to 50 parents are underway.
Driving Impact Beyond Research
From the outset, enhancing impact has been central. The team is working with clinicians around Australia and experts in Implementation Science at University of New South Wales to ensure the tool fits into real-world care pathways. Plans for non-traditional outputs, including a podcast and an art exhibition, will further ensure findings are accessible and meaningful.
Changing the Culture of Care
NurtureNextGen is about valuing lived experience and challenging deficit-based narratives. By reducing stigma and empowering parents to envision a hopeful future, this project is helping to nurture the next generation.
No responses yet