NurtureNextGen: Co-design of a digital tool to support families of children with genetic neurodevelopmental conditions to receive balanced prognostic information

Project Member(s): Turbitt, E., McEwen, A., Hemsley, B., van den Hoven, E.

Funding or Partner Organisation: Medical Research Future Fund (Medical Research Future Fund – Preventive and Public Health Research Initiative 2021 Consumer-Led Research Grant)
Medical Research Future Fund (Medical Research Future Fund – Preventive and Public Health Research Initiative 2021 Consumer-Led Research Grant)

Start year: 2025

Summary: Neurodevelopmental conditions impact the brain and become evident during childhood. These conditions variably affect cognition and behaviour and may lead to intellectual disability and autism. With the wider use of genetic testing, the diagnosis of neurodevelopmental conditions with a genetic basis is expected to increase. Parents often experience fear and uncertainty when a child is diagnosed. Emotional distress can be exacerbated by the medicalised prognosis, focusing on a child’s deficits, from doctors and online resources. We aim to facilitate a “strengths-based” approach that emphasises a child’s existing qualities and strengths, and their positive possibilities for the future. To accomplish this, we will create “NurtureNextGen” a consumer-led, evidence-based digital tool. Its primary goal is to enhance health self-efficacy and improve quality of life for the whole family. This can best be achieved through a balanced perspective that embraces strengths, acknowledges complexity and fosters agency. The aim is to support families at the stage of genetic diagnosis, while also empowering them by nurturing realistic hopes and expectations. To develop the tool, we will hold workshops and use arts-based research methods to iteratively co-design NurtureNextGen in partnership with two cohorts of consumers: parents of children with genetic neurodevelopmental conditions and paediatric specialists. We will explore implementation and feasibility through an implementation science approach. Our multidisciplinary team of consumers and academics has the expertise to create and deliver this intervention that will make a meaningful difference to the lives of children and their families. Key outcomes will be: (1) a digital tool, NurtureNextGen; (2) an implementation plan; (3) a statement of guiding principles emphasising strength-based conversations about children’s futures; and (4) new knowledge about strength-based approaches to genetic neurodevelopmental conditions.

FOR Codes: Ability and disability, Families and family services, Neonatal and child health, Medical genetics (excl. cancer genetics), People with disability