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Supporting kids living with cerebral palsy and their families to thrive

Christopher and his family support the collaborative approach of the EPIC-CP research model.

Cerebral palsy (CP) is the most common physical disability of childhood. It is a lifelong disability impacting 1 in 700 children. Many children with CP also have other medical conditions and need ongoing access to health and social services to be healthy and this can be especially challenging for families who are socially disadvantaged.

Babies born with CP in socioeconomically disadvantaged neighbourhoods are less likely to be walking at age five and more likely to have at least a moderate intellectual disability compared to children born in more affluent suburbs,” says Associate Professor Sue Woolfenden, Senior Staff Specialist in the Department of Community Child Health at the Sydney Children’s Hospital Network and NHMRC Senior Research Fellow with the UNSW School of Women’s and Children’s Health.

As a clinician researcher, A/Prof Woolfenden has additional insights to health issues that help her to translate research outcomes into real-life situations.

Her work has led her to ask two potentially life-transforming questions for kids with CP: What is it about growing up in lower socioeconomic neighbourhoods that means kids with CP have such different outcomes? And what would it mean to these kids if the inequities they face could be fixed?

The answer? Breaking the cycle of disadvantage and disability so that all kids with CP can thrive.

To explore how best to do this, she is leading a multidisciplinary team for an Australian-first project EPIC-CP. This exciting new research study was unearthed during the SCHF Greenlight Pilot and made possible by a funding partnership between SCHF and Cerebral Palsy Alliance.

The EPIC-CP model includes two dynamic advisory groups – one with the parents of a child or young adult with CP, the other with young adults who have CP who can share their lived experience with the researchers.

The research co-production model is at the heart of the EPIC-CP project” says A/Prof Woolfenden. “If we truly are interested in providing the best health outcomes for all children, we need to stop doing research on them and need to be doing research with them and led by them.”

Christopher’s family has been supported by Cerebral Palsy Alliance on their journey and they support the EPIC-CP research model, as they can see how it would help other families who face additional challenges.

“We really feel for families facing socioeconomic disadvantage and all of the many layered additional difficulties that brings. We’re incredibly supportive of this project and the collaborative approach – including families together with researchers - understanding what it’s like for kids with CP and their families. Cerebral Palsy Alliance is like our extended family, they have supported our son and our whole family so much.”

EPIC-CP has huge potential to be applied across a huge range of childhood health areas, not just in Australia, but worldwide.

 

Greenlight Pilot

In Hollywood, the Greenlight process is about reputational buy-in and decision-making for investment in movies. The SCHF Greenlight Pilot aimed to draw on this concept to create a donor-centric engagement tool for philanthropists who want to approach their giving differently. Find out more at https://www.schf.org.au/our-impact/the-greenlight-pilot

Cerebral Palsy Alliance

Cerebral Palsy Alliance funds the world’s best and brightest researchers to find ways to improve current interventions and ultimately find a prevention and cure for cerebral palsy. Visit cerebralpalsy.org.au to find out more.

SCHF’s priority is to ensure the health and safety of all participants. Please continue to be COVID Safe at all times and ensure you stay up to date with the latest NSW Health advice.

Sydney Children's Hospitals Foundation raises funds for Sydney Children's Hospital, Randwick , The Children's Hospital at Westmead, Bear Cottage, the Newborn and Paediatric Emergency Transport Service (NETS NSW) and Kids Research