Toolkit to support whānau through the early years

The process of getting a Cerebral Palsy (CP) diagnosis can be challenging.

Your baby may be in NICU, there may be medical complications, or it may have been a difficult birth. There can be misdiagnosis and delays around being seen by specialists.

And when you do receive a diagnosis, it can be distressing and a relief all at the same time.

With that in mind, people with lived experience of Cerebral Palsy – Hōkai Nukurangi have been calling for New Zealand specific information about the neurological condition to be shared with families around the time of diagnosis.

Outcomes from the Starship Foundation CaPTuRE project (www.starship.org.nz/health-professionals/capture-study) on the CP diagnosis experience in New Zealand prompted the development of the Cerebral Palsy – Hōkai Nukurangi: The Early Years Kete with support from the Cerebral Palsy Society.

The kete is a toolkit for whānau, families and other people who have had a new or recent connection with CP and want to know more about it in the early years of a child’s life.

New Zealand Cerebral Palsy Register Project Manager Anna Mackey, pictured, says it includes information about CP, the services available in Aotearoa New Zealand, and examples of different organisations to connect with.

The toolkit also covers early interventions, education and looking after the wellbeing of parents and wider whānau.

Producing the toolkit started with a research project run by a team at Starship Hospital looking at raising awareness of early detection of CP. 

“This project involved collecting information from people with lived experience of Cerebral Palsy by written survey and face-to-face sessions with both whānau, families and health professionals, on how the Cerebral Palsy early diagnosis and management experience could be improved,” Anna says.

The toolkit team is grateful to the many people across Aotearoa New Zealand involved in guiding them on what information to include and how it should be presented and shared.

The full kete, has been translated into te reo Maori and Samoan, and a shorter version has been created in Tongan.

Anna and the Cerebral Palsy Society team have future toolkits in mind.

“The plan is to gather helpful and relevant information about Cerebral Palsy for different age groups, for example, on schooling, education, employment, housing and other life activities that let people achieve what is important to them,” she says.

Anna says thanks must go to the researchers, funders, organisations and individuals involved in pulling the toolkit together:

• Starship Foundation and the Athlae Lyon Starship Research Trust
• Sutherland Self Help Trust
• Trillian Trust
• Whānau and people with lived experience of CP
• The Cerebral Palsy Society of New Zealand
• Health professionals across Aotearoa New Zealand.

You can access Cerebral Palsy – Hōkai Nukurangi: The Early Years Kete here: www.cerebralpalsy.org.nz/cerebralpalsy/the-early-years-0-5