Background and Aims

Cerebral palsy (CP) is a condition that affects many children, and some children with CP have complex medical needs. Managing their healthcare needs can involve 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, 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 by families and health care professionals. It was done using co-design, which means parents of children with CP, healthcare providers who work closely with these families, and researchers all worked together to do the project.

About the Complex Care Hub

The Complex Care Service at Royal Children’s Hospital (RCH) was set up in 2017. This service offers support to families who have a child with complex medical needs. About 25% of the children who access the service have CP. 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 CP 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 wanted to know how getting help from the Complex Care Hub affects how often families use healthcare services and the type of services they used.
2. Learn from Experiences: We asked parents, young people with CP, and healthcare workers about their thoughts on the services provided.
3. Improve Care: We wanted 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. We gathered a lot of information from medical records, interviews with families and healthcare workers, and existing research.

Phase 1 Results

This phase looked at information from the medical records of 78 children who received services from the Complex Care Hub because they have medically complex CP. This information was compared with the information of 92 children who had medically complex CP and who received 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.

The first phase is now complete and the findings published in the Journal of Paediatrics and Child Health.

Phase 2 Preliminary Results

In this phase, 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.

The issue

What helps

Next steps:

• Understanding Clinician Perspectives: We have interviewed healthcare providers about their experiences and thoughts on caring for children who have medically complex CP. We want to understand how clinicians see the challenges and opportunities in providing care.  We are currently analysing these interviews.
• A manuscript titled “Coordinating care: experiences and perspectives of clinicians working with children with medically complex cerebral palsy” is currently in preparation.
• Working Together to Improve Services: Together with families of medically complex children, we will use what we have learned to make recommendations about better ways for these families to access healthcare services. This approach ensures that the services meet the needs of families effectively.

This project received seed funding from the Melbourne Disability Institute and the project team consists of A/Prof Adrienne Harvey, Dr Nicole Merrick, Dr Daisy Shepherd, Dr Susan Gibb, Dr Gordon Baikie, A/Prof Anita D’Aprano, Prof Dinah Reddihough, Rose Babic, Frances Hunter, Greta Jealous and Prof Christine Imms.