From Clinical Academic Group to National Voice for Children
Ten years ago, SPHERE established its Kids to Adults Clinical Academic Group to improve the lives of children with chronic illness and their families. Today, that initiative has evolved into Child UnLimited, a nationally recognised organisation influencing research, advocacy and policy across Australia and standing as one of SPHERE's enduring legacies.
Created in response to the reality that more than one million Australian children live with a chronic illness, Kids to Adults recognised that while many children receive excellent medical care, the health, education and social systems surrounding them were never designed to support their complex needs. The Clinical Academic Group brought together researchers, clinicians, consumers and community organisations with a shared vision of creating more coordinated, family-centred care and ensuring children and families had a stronger voice in shaping the future of healthcare.
A vision that grew beyond SPHERE
As collaborations strengthened and new opportunities emerged, Kids to Adults evolved into Child UnLimited, allowing its work to extend well beyond the original Clinical Academic Group.
Today, Child UnLimited is recognised as a trusted national organisation advocating for children and young people living with chronic illness and disability. Through research, stakeholder engagement, consumer leadership and policy advocacy, it continues to ensure lived experience is embedded in the design of healthcare services, research priorities and government policy.
"SPHERE gave us the opportunity to bring together researchers, clinicians, families and consumers around a shared purpose," Professor Raghu Lingam said.
"That collaboration created the foundation for Child UnLimited and demonstrated the value of ensuring the voices of children and families are at the centre of research, healthcare and policy."
Child UnLimited's Consumer Advocacy and Engagement Manager, Jen Henwood, believes the organisation's greatest strength lies in ensuring lived experience is embedded in every stage of research and service improvement. Drawing on both her professional background in health communication and her lived experience as the parent of a child with complex health needs, she works to ensure the voices of children, young people and families remain central to the organisation's work.
"Children, young people and their families bring invaluable insight into what works, what is missing and what needs to change in healthcare," Ms Henwood said.
"Child UnLimited creates a powerful opportunity to turn that lived experience into better research, services and outcomes."
One of the organisation's earliest initiatives asked a simple but powerful question: what research matters most to families?
Through the ‘Understanding Caregiver Priorities for Research in Children with Chronic Conditions’ project, parents and caregivers from across Australia ranked the research questions they believed would make the greatest difference to everyday life. The findings are now helping guide future research priorities and encouraging investment in areas that reflect the real-world needs of children and the families who care for them.
Building the next generation of advocates
Child UnLimited has also focused on ensuring children and young people are active partners in shaping future healthcare.
In 2023, the organisation launched its ‘Youth Mentorship Program’, co-designed with young people living with chronic illness and disability. The program connects participants with experienced mentors while creating opportunities to contribute to research, conferences, workshops and advocacy activities, helping develop the next generation of consumer leaders.
Driving change across Australia
The influence of Child UnLimited now extends well beyond the organisation itself through its contribution to several major national initiatives.
Among them is ‘RuralKidsGPS’, a nurse-led care coordination program supporting children with complex health conditions in rural and remote NSW. The program embeds paediatric care coordinators within local health services to improve access, reduce fragmented care and provide families with a consistent point of contact. Early evaluation shows the model is improving equity of access, continuity of care and system efficiency, and in 2024 it received the Sydney Children's Hospitals Network Quality and Innovation Award.
Child UnLimited has also supported ‘Strengthening Care for Children’, an evidence-based model that builds stronger partnerships between paediatricians and general practitioners. The program has reduced unnecessary hospital referrals, informed Medicare-funded co-consultation support and contributed to the rollout of the online version of strengthening care for children, the Sustain model, across New South Wales.
Another important initiative is ‘Transition Compass’, a digital health program designed to support young people with chronic illness as they move from paediatric to adult healthcare. Through tailored text-message reminders, educational resources and personalised health coaching, the program helps young people develop the confidence and skills needed to manage their health more independently while remaining connected to appropriate care.
An enduring legacy
Unlike many research initiatives that conclude when funding ends, Kids to Adults has continued to grow, evolving into an organisation that is helping shape healthcare long after the original SPHERE Clinical Academic Group concluded.
Professor Lingam said the greatest achievement has been ensuring children and families are no longer passive recipients of care but active partners in improving it.
"Children and families understand the challenges of living with chronic illness better than anyone," he said.
"By working alongside them, we can develop research, services and policies that respond to what matters most and create lasting improvements in care."
The journey from Kids to Adults to Child UnLimited is one of SPHERE's key success stories with lasting significance. Ten years after the Clinical Academic Group was established, the conversations it started are still shaping research, influencing services and ensuring children and families have a seat at the table when decisions about their care are made.