Improve Pre-Surgery Information for Families of Children with Cerebral Palsy

About the Project and the Involvement Opportunity
Many children with cerebral palsy (CP) require orthopaedic surgery, often involving complex procedures and prolonged recovery periods. Inadequate preparation and limited access to clear pre-operative information can contribute to increased anxiety, reluctance to proceed with treatment, and poorer hospital experiences. These factors may also increase the risk of medical trauma and reduce future engagement with healthcare services.

Despite increasing concern regarding procedural distress in this population, there is limited evidence guiding pre-surgical education for children with CP and their families. This project aims to evaluate whether a co-designed, consumer-informed education package can improve the experiences of children with CP and their caregivers during the surgical journey.

Your involvement as a consumer will help us understand what resources are required, how and when they are best delivered.

About the Position
We are seeking to establish a Consumer Advisory Group to meet bi-monthly to advise the research team on what information should be provided to families before children with cerebral palsy undergo orthopaedic surgery. The team want to embed lived experience into practice as resources are updated.

What Am I Expected to Do?

Attend regular meetings with the research team (e.g., monthly or quarterly)
Review documents (e.g., grant applications, consent forms, surveys)
Share your lived experience and insights

What Skills or Experience Do I Need?
We are looking for parents or carers with lived experience. Children (8 years and older) with cerebral palsy, their parents or primary caregivers. No prior research experience is required. You should be comfortable contributing to group discussions, reviewing documents, and joining online meetings using Zoom/Teams.

How Long Am I Expected to Be Involved?
We anticipate 1-2 hours bimonthly. Meeting will be held over 12 months, with occasional email in between.

Where Will Meetings Be Held?
A mix of in-person and online, depending on consumer preference

What Support Is Offered?
An honorarium of $37.50 per hour is available for consumer involvement activities in line with CCIProgram guidelines.
Training and support provided by the CCIProgram or relevant support body

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