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CP-Achieve

What is CP-Achieve?

CP-Achieve is a five-year program of research working to find ways to help adolescents and young adults with cerebral palsy live a full and healthy life.

 

CP-Achieve is funded by the National Health and Medical Research Council.

We are a team of adolescents and young adults with cerebral palsy, families, clinicians, researchers and students who are working together to meet CP-Achieve’s aims.

 

CP-Achieve started in February 2020 and will finish in 2025.

 

What does CP-Achieve do?

CP-Achieve does research aiming to support people with cerebral palsy aged 10 to 30 years to achieve good health, access to excellent health services, and to participate in relationships, work, leisure, physical activity and the community.

 

We are doing projects to understand:

 

  • The physical and mental health problems of young people with cerebral palsy
  • What outcomes are important to young people

 

We can use this information to:

 

  • Develop programs to be used by health and disability providers to assist young people
  • Help young people to attend health and community services that meet their needs
  • Understand the costs of services that work
  • Inform policy and practice

 

CP Achieve has two main programs. Each program runs several research projects. The programs are:

1. Improving the physical and mental health of adolescents and young adults with cerebral palsy.

2. Building supportive family, community and health service environments which help young people take part in life situations which are important to them.

 

Four important themes are included in all our work. These are:

 

  • Promoting participation
  • Health economics
  • Developing a specialist workforce
  • Consumer involvement

 

Here is more information about each of these themes.

 

What we mean by: Promoting Participation

We define participation as being involved in life situations such as activities that occur in home, school, work, recreation, community and health care settings.

 

Why is participation important?

 

Active participation builds fitness, fun, social and community links, and self-management of health needs.

 

Participation builds confidence and preferences for a healthy lifestyle that will help physical and mental health and satisfaction with life.

 

What will CP Achieve do to promote participation?

 

CP-Achieve will:

  • Understand the impact of physical and mental health on participation
  • Develop interventions that will support adolescents and young adults with CP to participate in Australian health care and community settings
  • Learn how to create environments which support participation - that is, environments that are accessible, acceptable and accommodating

 

What we mean by: Developing a Specialist Workforce

We aim to support health care and other workers to develop specialist skills and knowledge for working with adolescents and adults with cerebral palsy (CP).

 

Why is it important?

 

For people with CP to receive the best health care throughout their lives – not just in childhood – the healthcare workforce needs to be expanded and include health and disability workforce with special skills working with adolescents and adults.

 

What we will do?

 

We will:

  • Provide education to support those working with people with cerebral palsy
  • Carefully share our new knowledge to inform clinical practice

 

What we mean by: Health Economics

We will work out the costs of all our programs, whether they are cost effective, whether they are worth it to people with cerebral palsy and their families, and how we can use this information to influence clinical practice, health services and health and social policy.

 

What we mean by: Consumer Involvement

Consumer involvement is when adolescents and young adults with cerebral palsy and their families partner with researchers in all aspects of research.

We believe that our research is better with consumer involvement and our findings better meet the needs of people with cerebral palsy and their families.

Consumers can be involved as consultants, advisors, collaborators and/or co-producers of research by taking part in reference groups, advisory panels, and as researchers.

 

CP-Achieve aims to:

 

  • Involve consumers from the beginning to decide what to research; plan the design and methods; carry out the research; analyse findings; and ensure that the findings reach and inform the people who need to know in the best ways
  • Find creative, appealing and effective ways of involving adolescents, young adults and families from across Australia including those who have significant physical disability, sensory impairments, communication difficulties and/or intellectual disability

If you would like more information please contact CP-Achieve Coordinator Kari Klein at kari.klein@mcri.edu.au and share this email with your network for those who may be interested in being involved.

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Please email cp-achieve@mcri.edu.au if you would like to enquire about any of the information above in more detail, future podcasts or about presenting, webinars, previous editions of our newsletter, or anything else.

To register your interest: CLICK HERE

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The Centre of Research Excellence in Cerebral Palsy is funded by the National Health and Medical Research Council

CP-Achieve has been established with key research leaders from our past CRE (CRE-CP, concluded Feb 2019). This CRE will focus on one of the most disadvantaged groups in our society, adolescents and young adults aged 10 – 30 years with cerebral palsy. This developmental period is critical for establishing physical and mental health foundations for adulthood, for young people to learn to manage their own health care and to transition to adult roles and opportunities.

Our multidisciplinary team, with disability, adolescent health, psychiatry, orthopaedic surgery and health economics expertise, will conduct a focussed body of research to determine and address the needs of this group, establish best methods of engagement with them and their families, determine optimal treatments, translate the evidence to the workforce, including general practitioners and allied health professionals, create recommendations for new models of care, and train an urgently needed adult health-care workforce with knowledge and skills in this area.

Based on our well-known platform of the Cerebral Palsy Registers, we will access population-based samples of adolescents and young adults, to engage them in research using a range of research methodologies including data linkage, online surveys and interviews and examinations. In conjunction with international collaborators, we will also trial new approaches to promote fitness, reduce pain and fatigue and optimise community inclusion.

Our research program will be maximised by fourembedded themes: a focus on participation, authentic engagement with consumers, detailed health economics to inform costs and cost-effectiveness, and building a skilled workforce. 

Professor Rob Carter, Deakin University
Role: 
Chief Investigator
Professor Nora Shields, La Trobe University
Role: 
Chief Investigator
Professor Prue Morgan, Monash University
Role: 
Chief Investigator
Doctor Margaret Wallen, Australian Catholic University
Role: 
Chief Investigator
Doctor Ingrid Honan, University of Sydney
Role: 
Chief Investigator
Professor Bruce Bonyhady, University of Melbourne
Role: 
Associate Investigator
Ms Evelyn Culnane, Royal Children's Hospital
Role: 
Associate Investigator
Associate Professor Gabrielle Drake, Western Sydney University
Role: 
Associate Investigator
Doctor Jane Tracy, Monash Health
Role: 
Associate Investigator
Professor Peter Rosenbaum, McMaster University
Role: 
Associate Investigator
Professor Jan Willem Gorter, McMaster University
Role: 
Associate Investigator
Professor Leanne Sakzewski University of Queensland
Role: 
Associate Investigator
Doctor Leanne Johnston, University of Queensland
Role: 
Associate Investigator
Professor Mats Granlund, Jönköping University
Role: 
Associate Investigator
Megan Walsh, Deakin University
Role: 
PhD Candidate
Georgia Mckenzie, La Trobe University
Role: 
PhD Candidate
Nadine Smith
Role: 
PhD Candidate

Administering Institution: Murdoch Childrens Research Institute

Participating Institution(s):Department:
Australian Catholic University Melbourne
School of Allied Health
Australian Catholic University NSW
School of Allied Health
Deakin University
Deakin Health Economics
Jönköping University
School of Education and Communication
La Trobe University 
Department of Rehabilitation Medicine, Nutrition and Sport
McMaster University 
 Department of Paediatrics
Monash University 
Centre for Developmental Disability Health
Monash University
Department of Physiotherapy
Murdoch Childrens Research Institute
Centre for Adolescent Health
Murdoch Childrens Research Institute
Orthopaedics
Murdoch Childrens Research Institute
Neurodisability and Rehabilitation
Royal Children's Hospital
Department of Adolescent Medicine
University of Melbourne
Melbourne Disability Institute 
University of Sydney
Cerebral Palsy Alliance Research Institute
University of Queensland
School of Health and Rehabilitation Sciences
Western Sydney University 
School of Social Sciences
 
  1. Improving physical and mental health
  1. Building supportive environments

1.1.1: Estimate prevalence of physical and mental health problems; and

Victorian-based birth cohort of adults with CP follow up

1.3.1: Expanding available evidence to those with complex disability

1.1.2: Understanding health service use and outcomes

1.3.2: Adapt an evidence-based lifestyle program to Australian context

1.1.3: Determine impact on participation in education, employment & community

2.1.1: Understanding and defining supportive health/NDIS service environments

1.2.1: Long term health benefits of multi-level surgery

2.1.2: Understanding the needs and perspectives of people with CP and their families

2.2.1: Evaluate the outcomes of transition services for young people with CP

2.1.3: Creating pathways from rehabilitation to recreation

2.2.2: Evaluate impact of screening on the identification of mental health problems

2.3.1: Adapt evidence-based empowerment programs to the Australian context

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