New digital resource for carers of people with cerebral palsy
Cerebal Palsy Australia has launched national online platform My CP Guide to support people living with cerebal palsy and their families and carers.
The first national online platform dedicated to cerebral palsy has launched in Australia.
Designed by clinicians, researchers, and health and disability providers, My CP Guide aims to plug an information gap for the 34,000 people in Australia living with cerebral palsy and their carers and families.
“It was developed in response to need and delivers high-quality and consistent information to people with cerebral palsy, their families, carers and relevant supports and services, such as clinicians and allied health practitioners,” said Professor Dinah Reddihough – a paediatrician with more than 30 years’ experience in the clinical care of children with disabilities, especially cerebral palsy.
Funded under the Australian Government’s Information Linkages and Capacity Building program and led by Cerebral Palsy Australia, My CP Guide provides users with the most current and evidence-based information available.
“Healthcare professionals will be able to find information and research outcomes of various therapies and interventions, services and supports,” said Professor Reddihough – a member of the expert panel behind the resource and contributor to the Australian and New Zealand CP Strategy.
Cerebral palsy is an umbrella term for a broad group of movement disorders due to damage to the developing brain. There is no single cause of cerebral palsy and the way it presents itself to an individual can change over time.
In 2020, researchers gathered firsthand evidence from people with cerebral palsy, their parents and carers. The research highlighted that the information needs of people with cerebral palsy vary a lot, with the age and life stage of the person with CP heavily influencing those needs.
It also highlighted the challenges in finding reliable, useful and timely information about CP as well as the difficulties that exist when seeking support. This evidence base helped drive the development of the platform.
My CP Guide includes information and resources on:
- diagnosis and assessments
- therapies and interventions
- independence and inclusion
- managing cerebral palsy throughout your life
- managing health and wellbeing
- school, education, work and leisure
- accessing the community.
The resource also features information about the management of other conditions which often impact on individuals with cerebral palsy, such as swallowing difficulties, mental health issues, sleep and breathing problems, and nutrition.
“Whilst the website provides information which relates to the management and treatment of cerebral palsy, it also provides holistic information underpinned by the social model of health,” said Professor Reddihough.
My CP Guide is constantly being updated. Over the coming months, more resources will be added for people with cerebral palsy at each stage of life.
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