Background and Aims

Cerebral palsy is a complex condition that affects many children. Managing their healthcare needs involves a lot of different professionals. Parents and caregivers often end up coordinating all these services, which can be really demanding on their time, energy, and money. There are programs designed to help coordinate care for children with complex medical needs, like those with cerebral palsy, but not all families have access to these programs. We’re also not sure how well these programs work yet. 

This project was started because it was seen as very important. It was created using co-design, which means parents of children with cerebral palsy, healthcare providers who work closely with these families, and researchers all worked together to develop it. Cerebral palsy is expensive for the healthcare and disability services, but it’s even more costly for families. The cost isn’t just financial—it’s also emotional. 

This project has received seed funding from the Melbourne Disability Institute. 

About the Complex Care Hub

The Complex Care Service at RCH (Royal Children’s Hospital) was set up in 2017 and currently helps 323 children with complex needs. About 25% of the children who access the service have cerebral palsy. This service offers support to families who have a child with complex medical needs. They provide different levels of support based on what each child and family require. 

Key components of the Complex Care Service include: 

1. Care Coordination: This means organizing and managing all the different healthcare services that a child with cerebral palsy needs. It ensures that everything works together smoothly. 
2. Access to Services: This involves making sure that families can easily get the medical help and support they need for their child. It’s about removing barriers so families can reach healthcare services easily. 
3. Family Partnership: This means involving parents and caregivers as partners in their child’s healthcare journey. It ensures that families are listened to, respected, and actively involved in decisions about their child’s care. 

About the project

This project aims to do a few things: 

1. Understand Impact of Support: We want to know how getting help from the Complex Care Hub affects how often families use healthcare services and how much it costs them. 
2. Learn from Experiences: We wanted to ask parents, young people with cerebral palsy, and healthcare workers about their thoughts on the services provided. 
3. Improve Care: We want to work with everyone involved to make sure families get better access to care, have better experiences with it, and get better results from their healthcare. 

Two phases of the project have been completed and we gathered a lot of information from medical records, interviews with families and healthcare workers, and existing research. 

Phase 1 Results

This study looked at information from the medical records of 78 children who received services from the Complex Care Hub because they have medically complex cerebral palsy. This information was compared with the information of 92 children who got regular care at the hospital. 

We found that children who used the Complex Care Hub had more visits to the emergency room, longer stays in the hospital, and more appointments at hospital clinics. These children also had more complex health issues and needed more support from their community. 

Interestingly, even though they used more hospital services, the study didn’t determine if these children and their families had a better experience overall. This is something that future research should investigate further. 

Phase 2 Results

We interviewed families who received help from the Complex Care Hub and those who received regular hospital care.  

The study found that both groups of families face challenges because of how complicated each child’s health needs are and how complex the healthcare system itself is. These challenges make it difficult for families to get the care their child needs. 

• Understanding Clinician Perspectives: We also want to hear from healthcare providers about their experiences and thoughts on caring for children who have medically complex cerebral palsy. This will help them understand how clinicians see the challenges and opportunities in providing care. 
• Working Together to Improve Services: Together with families of medically complex children, we will design better ways for these families to access healthcare services. This approach ensures that the services meet the needs of families effectively. 

The issue

What helps