Kids to Adults (K2A)
Chronic illness affects every aspect of a child’s life, from school achievement and social networks, to psychological and physical wellbeing. These ‘whole of life’ problems can alter a child’s life trajectory compared to their peers, and has created a new challenge for our nation; to help children with chronic illness and their families live their best lives and achieve their personal potential.
More than 20% of all Australian children and young people attend hospital for their chronic health needs, with many more attending community and primary care services. Children with chronic illness often take medication every day, have frequent blood tests, and endure long hospital stays. Their illnesses often create massive financial cost and dislocation of family. These family stresses are magnified for rural, culturally and linguistically diverse and Indigenous Australian families.
Management of chronic illness in childhood is complex and requires coordinated care across hospitals, primary health care providers and community organisations, yet there is no standardised support for families navigating this complex pathway. This places significant burden on the child, their family and health systems and despite this, current models of care fail to recognise this gap. The K2A Clinical Theme is working to reduce the ‘whole of life’ impact that chronic illness has on the child, their family, and the health economy. Similarly, we will protect the rights of every child to reach their full potential.
Our Vision
Our Vision
Maximising the potential of children and young people with chronic illness.
Our Focus
Our Focus
National Network
Child UnLimited is a national network of over 250 parents and young people affected by a chronic illness, along with researchers, clinicians and advocates from Australia’s leading child health research institutes, universities, health services, and not-for-profit organisations. Our network is determined to find solutions to the problems facing children with chronic illness and their families and allow them to have the same life trajectory as their healthy peers.
Our national consultation with 252 young people and families identified the following priorities for national action:
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Day to Day Functioning
There is an urgent need to address a multitude of daily problems including poor physical and mental health, lower school achievement, disrupted social networks, and financial pressures. Families also need support to seek care in an increasingly fragmented and hard to navigate health system
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Impact on the Family
Children with chronic illness and their families have unmet mental health care needs. We need to reorientate our health services to support the mental well-being of the entire family unit.
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Access to Care
It is increasingly difficult to access specialist paediatric services. Our families are passionate about improving access for priority populations including rural and remote communities to make health outcomes more equitable.
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Our Projects
Our Projects
ANGEL AID Caregiver Wellness Retreat
Genetic epilepsies represent the most severe epilepsies. Children with a genetic epilepsy often experience chronic neurocognitive impairment and/or regression with a high risk of premature death.
The Australian Child and Youth Wellbeing Atlas
The Australian Child and Youth Wellbeing Atlas is a freely available new data asset that maps data on children and young people in communities across Australia.
Rural Kids GPS
Kids Guided Personalised Service (KidsGPS) is a care coordination service at SCHN, first established in 2015 for children with complex medical needs.
Strengthening Care for Children – rural (SC4RC)
The SC4C model has been adapted for evaluation at scale in a rural setting, to address the increased risks of poor health and reduced access to specialist paediatric care in rural communities.
Strengthening Care for Children (SC4C)
The Strengthening Care for Children (SC4C) project is an integrated model of care developed to strengthen the paediatric care skills of GPs and confidence in paediatric care and reduce referrals for paediatric patients to hospital and outpatient clinics.
Transition Compass
Chronic health conditions require lifelong engagement with specialist care. An estimated 2.5 million young Australians will require transition from child to adult services over the next 20 years.
Youth Mentorship Program
Child UnLimited has co-designed a Youth Mentorship Program with our consumer network. It aims to empower young people with skills to become the health advocates of the future.
Our Team
Our Team
Lead: Professor Raghu Lingam
Professor Lingam is a senior clinical academic with expertise in maternal and child health services research. He is Professor in Paediatric Population and Health Services Research at the University of New South Wales, Honorary Professor of Population Child Health at Kings College London and the Black Dog Institute (NSW), and a Consultant Paediatrician within the Sydney Children’s Hospital Network. He leads the Population Child Health and Health Services Research Group, UNSW Sydney, the NSW Centre for Child Health Services Research and Innovations (CHRIS). He has developed and evaluated large-scale child health intervention programs in low- and high-income settings to optimise the health, and development of children and young people. He has over 140 research publications and has attracted over 49.5 million dollars in research funding in the last 5 years.
For more information about Kids to Adults (K2A), contact Kristine Concepcion.
Collaborators
Collaborators
The Child UnLimited Clinical Theme brings together NSW’s leading clinicians and scientists in childhood chronic illness. We have established a bi-directional partnership with child health specialties. This will help us discover solutions to common problems across the spectrum of child healthcare. We will do this using an internationally recognised model of child cancer research, which includes basic, translational, clinical and behavioural science investigators.
Our team comes from nine of our partner organisations and includes further collaborations with:
- UNSW
- Murdoch Children’s Research Institute
- Sydney Children’s Hospital Network
- The University of Queensland
- Children’s Health Queensland Hospital and Health Service
- Child and Adolescent Health Service WA
- University of Adelaide
- Flinders University
- Sydney Children’s Hospital Foundation
- Starlight Children’s Foundation
- Ronald McDonald House Charities
- Canteen Australia
- Rare Voices Australia
- ARACY
- Children’s Healthcare Australasia
- Siblings Australia
- Cystic Fibrosis Australia
- Kindred
- Syndromes Without a Name (SWAN)
We are using these partnerships to develop new funding applications, implement new policy and advocacy strategies, and ensure improvements to patient care and quality of life.
Contact us:
For more information on our work, contact Kristine Concepcion.
