Receiving a CP diagnosis in NZ

By Dr Anna Mackey – Starship Child Health Research Officer

The CaPTuRE research project is exploring a New Zealand specific Cerebral Palsy Toolkit to support families.

In 2020-2021, a team from Starship, the University of Auckland and the Cerebral Palsy Society ran the CaPTuRE research project.

It looked at the family experience of receiving a diagnosis of Cerebral Palsy in New Zealand.

The project gathered information from clinician and family surveys, and a series of codesign workshops held across Auckland and the Waikato.

Co-design creates solutions with, not for, users of services, products or experiences.

The workshops were central in exploring issues around the diagnosis process between family/carers and clinicians. 

Key information gaps were identified for families, in the Cerebral Palsy diagnosis process, and along the developmental stages.

A recommendation from this process was the need for a New Zealand specific Cerebral Palsy Toolkit to support families with useful resources and information.

In 2022, we look forward to developing this idea further, in conjunction with the Paediatric Society Cerebral Palsy Network and Cerebral Palsy Society.

We will feedback to the Society members throughout 2022 on our progress.

If anyone is interested in contributing ideas for the Toolkit’s content, email Cerebral Palsy Society Researcher and Member Support Advisor Amy Hogan amy@cpsociety.org.nz.

Information and outcomes from the CaPTuRE project are available here.

This article was originally published in the Jan-Apr 2022 edition of The Review magazine.

For more information:
Melanie Louden
Communications Manager
melanie@cpsociety.org.nz
Mobile: 022 087 8191