Thursday, April 22, 2021 - 12:00 PM

Who we are

We are a group of researchers, young people with cerebral palsy, and their families.

Why we are inviting you to join us

We would like you to join us as a Consumer Investigator - to guide our research - to make sure it best achieves what you want it to. We hope that you will share your advice, information, and expertise.

As a Research Partner you will join our research team to provide the perspective of a parent or family member. Your input will make sure that our research is relevant and meaningful to young people with cerebral palsy and their families.

More about the research

Our research aims to understand the experiences, needs, and thoughts or perspectives on the participation of young people with cerebral palsy, as they transition into and through young adulthood.

We want to understand the experiences that young people with cerebral palsy have as young adults in major life areas, such as accommodation, education, employment, healthcare, and relationships.

We also hope to gain greater understanding around what helps young adults with cerebral palsy best participate in the life areas that are most important to them.

Ultimately, with greater understanding of these experiences, and the things that make participation easier or harder, we hope to develop recommendations and practical resources to assist young people with cerebral palsy in meaningful participation within their communities.

First, we will find out what information is already available, by doing a ‘scoping review.’ The research team will develop a plan to find all of the scientific information on young adults with cerebral palsy transitioning to adulthood, will review the journal articles, and then interpret the overall meaning of the information that is available.

The Consumer Investigators on this team will offer their experiences, insights, and opinions in each of these stages, especially in the interpretation of the results. We are particularly interested in what the results of the scoping review will mean for young adults with cerebral palsy in Australia.

We anticipate that this scoping review will take approximately 1 year to complete.

After the scoping review, we think we will have a second and third project, involving a survey and focus groups. These projects will aim to better understand the opinions of people with cerebral palsy and their families in Australia, on the topic of transitioning to adulthood. You will help us decide on the next steps and you may like to continue to work with us.

We are asking you to:

  • Commit to one year of involvement, with the option of joining us in the next stages of our projects
  • Attend meetings approximately every second month (1 hour in duration, preparation material sent two weeks prior). We can tailor these meetings to your preferences and access needs (e.g. to best support your communication style). We will aim to accommodate meeting times around your other commitments
  • Review documents and provide your opinion and feedback, via email, in between the virtual meetings, in a timely manner. We will aim to provide you with two weeks to review documents and give feedback.
  • Share your viewpoints and experiences as a family member or carer of a young adult with cerebral palsy during the process of this review

Selection criteria

To be considered for the role of Consumer Investigator you need to:

  • Have experience as a family member/carer of young person aged 10-30 years with cerebral palsy, living in Australia
  • Have capacity to be involved in meetings and review documents in a timely way
  • Be passionate about positively impacting the health and life outcomes for young people with cerebral palsy in Australia

Benefits to you

Mostly the research team and the quality of the research will benefit by your involvement. People who are research partners tell us that they benefit by:

  • Learning more about cerebral palsy and treatments
  • Helping others
  • Contributing to important research
  • Getting to know researchers, therapists and other people
  • Learning more about research
  • Learning new information and developing new skills

Our responsibilities to you

  • Communicate clearly with you about roles and responsibilities, and research activities
  • Build a team of trust and openness where members feel confident and safe to have a say and express their views – where we also have a laugh and enjoy our work together.
  • Be flexible about involvement – making it as easy as we can for you to contribute to the research
  • Support you in your role – to prepare you well for taking on your role with us, with education and a dedicated person to check in about how you are going
  • We will provide a written reference for your résumé
  • Pay you for your involvement - $40 per meeting plus preparation (using vouchers)

What happens next?

CLICK HERE –  to leave your contact details if you are interested in speaking with one of the team members or in expressing an interest in joining a team. Click your browser’s back arrow to read about the other projects!

We will be holding an information session using Zoom with more information before you commit to being involved.