EPIC-CP
Addressing the double jeopardy of disadvantage and disability
Supported by
SCHF Greenlight matched gift
Disadvantaged families with cerebral palsy (CP) are doing it tough – even more so since the COVID pandemic – with increased poverty, social isolation and reduced access to services. EPIC-CP will work with children with cerebral palsy, their families and clinicians to develop and evaluate a healthsocial care pathway to deliver holistic, family-centred care to meet the needs of children and young people with cerebral palsy living in adversity. EPIC-CP will break the cycle of disadvantage and disability so that all kids with CP can thrive.
We need a paradigm shift in how we work with families of children who have disabilities such as cerebral palsy and who are living in socioeconomic adversity. We need clinicians to feel confident in sensitively asking children and their families about unmet social needs, we need a tool that allows them to do this as part of their routine clinical practice, and we need a pathway that then addresses any unmet social needs identified.
Internationally there is strong evidence that there is significant social and economic benefit if you teach clinicians how to identify unmet social needs in a respectful way, and then support families to have these needs addressed by linking them with local non-government organisation, health, welfare, education and community services. However to date, there have been no trials in Australia and no trials in children with severe disabilities, some of the most vulnerable in our society.
“So what we want to do is we want to work with children and young people with Cerebral Palsy in their families, and their service providers, to say, “what are the questions you would like clinicians to ask when you come in to your appointments in the rehabilitation clinics?” and then, “what would you like the clinicians to do in terms of helping you navigate that system,”” explains Associate Professor Sue Woolfenden, Developmental Paediatrician and NHMRC Senior Fellow.
EPIC-CP will assist children with CP and their families to navigate a bewildering and sometimes terrifying system. They will provide timely, localised details so that children with CP and their families can be assured of receiving compassionate care, be linked to the services they need and assisted to get to these services. EPIC-CP will also support overwhelmed and frustrated clinicians to provide holistic care to address what matters to families in a complex and fragmented health-social care system.
If EPIC-CP is feasible and acceptable, the next step is to scale up to a multi-site national roll out to examine its effectiveness in identifying and treating the unmet social needs of families, improving child quality of life, family wellbeing and parental/carer mental health. EPIC-CP has potential value not only for the 35,500 people with CP in Australia but the almost 450,000 Australian children living with a disability. It could also be adapted to include an e-health platform for greater reach with additional online support for families and clinicians.
EPIC-CP is an essential step towards ensuring that children living in adversity with neurodevelopmental disabilities receive the right service at the right time in the right place. The initial findings will guide policy on how to support disadvantaged children and young people with cerebral palsy at the point of entry into the health system.
Hear more from Associate Professor Sue Woolfenden.
We need a paradigm shift in how we work with families of children who have disabilities such as cerebral palsy and who are living in socioeconomic adversity. We need clinicians to feel confident in sensitively asking children and their families about unmet social needs, we need a tool that allows them to do this as part of their routine clinical practice, and we need a pathway that then addresses any unmet social needs identified.
Internationally there is strong evidence that there is significant social and economic benefit if you teach clinicians how to identify unmet social needs in a respectful way, and then support families to have these needs addressed by linking them with local non-government organisation, health, welfare, education and community services. However to date, there have been no trials in Australia and no trials in children with severe disabilities, some of the most vulnerable in our society.
“So what we want to do is we want to work with children and young people with Cerebral Palsy in their families, and their service providers, to say, “what are the questions you would like clinicians to ask when you come in to your appointments in the rehabilitation clinics?” and then, “what would you like the clinicians to do in terms of helping you navigate that system,”” explains Associate Professor Sue Woolfenden, Developmental Paediatrician and NHMRC Senior Fellow.
EPIC-CP will assist children with CP and their families to navigate a bewildering and sometimes terrifying system. They will provide timely, localised details so that children with CP and their families can be assured of receiving compassionate care, be linked to the services they need and assisted to get to these services. EPIC-CP will also support overwhelmed and frustrated clinicians to provide holistic care to address what matters to families in a complex and fragmented health-social care system.
If EPIC-CP is feasible and acceptable, the next step is to scale up to a multi-site national roll out to examine its effectiveness in identifying and treating the unmet social needs of families, improving child quality of life, family wellbeing and parental/carer mental health. EPIC-CP has potential value not only for the 35,500 people with CP in Australia but the almost 450,000 Australian children living with a disability. It could also be adapted to include an e-health platform for greater reach with additional online support for families and clinicians.
EPIC-CP is an essential step towards ensuring that children living in adversity with neurodevelopmental disabilities receive the right service at the right time in the right place. The initial findings will guide policy on how to support disadvantaged children and young people with cerebral palsy at the point of entry into the health system.
Hear more from Associate Professor Sue Woolfenden.
Funds raised
$403,437
Project team
The team is led by Associate Professor Sue Woolfenden, Developmental Paediatrician and NHMRC Senior Fellow, Population Child Health Group at University of NSW. The team includes:
- Katarina Ostojic, Research Assistant and Early Career Researcher, Cerebral Palsy Alliance, University of Sydney
- Professor Raghu Lingam, Chair Population Child Health Group, University of NSW
- Professor Iva Strnadová, Professor in Special Education and Disability Studies, University of NSW
- Associate Professor Georgina Chambers, Director and Scientia Fellow, National Perinatal Epidemiology and Statistics Unit (NPESU), University of NSW - Dr Tim Scott, Rehabilitation Staff Specialist Sydney Children’s Hospital, Randwick and John Hunter Hospital; Senior Lecturer, University of NSW
- Dr Simon Paget, Rehabilitation Staff Specialist, The Children’s Hospital at Westmead; Clinical Lecturer, University of Sydney
- Professor Russell Dale, Paediatric Neurologist, The Children’s Hospital at Westmead; Professor, University of Sydney
- Dr Heather Burnett, Rehabilitation Staff Specialist, John Hunter Hospital; Conjoint Lecturer, John Hunter Hospital
- Dr BJ Dee Price, Sessional Lecturer Level B Southgate Institute for Health Society and Equity, Flinders University
The team has strong partnerships with several NGOs including the Cerebral Palsy Alliance, Wesley Mission, the Deli Women and Children’s Services, Botany Child and Family Services, South East Community Connect and Barnardos Australia.
