Community involvement in CP Research
A guide for people living with CP and their family members.
Community and Researchers together
CP Quest consists of people living with cerebral palsy, their families and advocates (CP Community) who are interested in supporting and facilitating CP research and want to collaborate with researchers affiliated with Cerebral Palsy Alliance.
Our group CP Quest has been formed to involve the CP Community in decisions about CP research and to integrate lived experiences into research activities.
People with cerebral palsy and their families can be the most powerful supporters and promoters of cerebral palsy research and CP Quest is bringing the CP Community and CP researchers together.
We strongly believe that involving the CP Community in CP research will:
- Improve the quality of research
- Ensure that research is meaningful for families
- Reduce the time it takes to move research into practice
- Result in better outcomes for people living with CP and their families
My name is Shannon Clough. I am very passionate about CP research and have proudly taken on the role as Chair for CP Quest. When my beautiful son Ethan was born at 26 weeks he was diagnosed as being profoundly deaf and having severe cerebral palsy. I, like so many parents, wanted answers and, even though I have now lost my beautiful boy, I still want those answers for people with cerebral palsy and their families. Cerebral Palsy Research is the way.
I invite you to join CP Quest and help guide CP research now and into the future. You can be involved as little or as much as you wish.
Your knowledge and experience is highly valued, and we need your help.
Joining CP Quest is an opportunity to:
- Communicate your views and ask key questions to ensure that issues important to you and the CP Community are identified and prioritised.
- Expand your knowledge about CP research, observe first-hand how it is undertaken and funded.
- Be part of a research team working towards making a difference for people living with CP and their families.
- Use your skills and lived experience to improve CP research.
You can be involved and contribute to research activities and might be invited to:
- Join a Reference or Advisory group and advocate or advise on a strategic level
- Jointly design, conduct or analyse a study as a member of a project team
- Examine and review participant information and consent forms
- Disseminate results and information to the broader CP community
- Contribute to scientific publications content as a co-author
- Co-develop a strategy to improve recruitment and retain participants
- Interview other members of the CP community
- Review draft questionnaires or surveys
- Be part of the discussion about CP research priorities
- Represent the views of the broader CP community at funding forums or on a particular topic
- Participate in focus groups identifying gaps and needs in current knowledge
- Answer a survey about a particular topic.
The level and/or frequency of involvement is voluntary and will mostly be over email.
Free training will be offered for people living with CP, their families and researchers.
To Join
To join CP Quest you will be required to register as a volunteer with Cerebral Palsy Alliance. We invite you to express your interest via the link below.
Please read our Terms of Reference.
Thank you!
Shannon Clough (Chair CP Quest)
Sarah Mcintyre (Co-chair and Research Lead CP Quest)
Isabelle Balde (coordinator CP Quest)
Register your interest by emailing us on cpquest@cerebralpalsy.org.au
The National Health and Medical Research Council and the Consumers Health Forum of Australia have released a revised joint statement reflecting the growing recognition of the place of consumers and community in health research.