The Murdoch Children’s Research Institute (MCRI) has been awarded a new grant for a project that aims to better address the health care and service needs of adolescents and young adults with cerebral palsy.
Researcher Megan Walsh secured the $19,951 funding under The State Trustees Australia Foundation’s 2022 Community Inclusion Grant Round, which focuses on social inclusion and participation for people living with disability.
Based at the Murdoch Children’s, the CP-Achieve Centre of Research Excellence brings together leading researchers and clinicians in the field to improve the health and well-being of those aged 10-30 years with cerebral palsy and their families.
Ms Walsh said the vision was to ensure that adolescents and young adults receive the best health care throughout this critical period of development, to enable them to contribute to, and participate in, all aspects of life.
She said the team was committed to involving those with cerebral palsy, their families, clinicians, and service-providers so they could contribute to and influence this research.
“CP-Achieve strongly believes that people with cerebral palsy have a right to be involved in research that impacts them,” she said. Their involvement in making decisions about every aspect of research benefits the research, researchers, and people with cerebral palsy.”
Cerebral palsy is the most common physical disability in childhood. In Australia, there are about 700 new cases each year and 34,000 people have cerebral palsy.
Cerebral palsy has a higher disability burden (in terms of years of healthy life lost) than being blind or deaf or having severe asthma, diabetes or heart failure.
“One-third of people with cerebral palsy have complex communication needs - they cannot participate in everyday communication through speech alone and need to use alternative ways of communicating. These people are severely under-represented in research,” Ms Walsh said.
“Co-developed with young people, this project will establish and implement a framework for involving people with complex communication needs in an advisory group and in individual research projects. This will empower them to share their expert knowledge about their lives and serve as a model for future research involvement.”
CP-Achieve, funded for five years by the National Health and Medical Research Council (NHMRC), aims to improve physical and mental health and to build supportive family, community and health service environments.
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*The content of this communication is the sole responsibility of MCRI and does not reflect the views of the NHMRC. CRE grant number 1171758