PARENT ADVISORY GROUP

Published
Thursday, April 22, 2021 - 12:00 PM

Who will be on the Parent Advisory Group?

This new advisory group will be parents and family members of adolescents and young adults with cerebral palsy aged 10 to 30 years. The team is led by Joan Gains, a parent of a young man with cerebral palsy. Joan has had extensive experience of working with researchers and coordinating and supporting consumers who are on advisory groups and who work on research team.

Why we are inviting you to join the Parent Advisory Group

Families are critical to development of young people as they navigate adolescence and the transition to young adulthood. This is even more the case for young people with cerebral palsy as parents support them to make life decisions, set goals and develop the skills necessary to be involved in everyday life situations and especially for young people who have significant physical, communication, health or intellectual needs. The Parent Advisory Group aims to capture the expertise you have in parenting a young person with cerebral palsy including navigating health and disability services, and communities and environments which may create barriers. For young people with significant disabilities, parents may be their voice, and represent and advocate for their needs and rights.  It is your expertise as a parent that we value in informing the research and activities of CP-Achieve.

More about the Parent Advisory Group

This group is new. At the first meeting, the group will decide on a name and agree on ways that the group will work together. You will learn about CP-Achieve and its research and activities. You will meet some of the researchers and young people with cerebral palsy who are already involved.

At future meetings, research teams will ask to meet with the group to seek input, advice and feedback on any aspect of their research. You may be asked to work out important research questions, or to give feedback on information sheets or surveys. We will ask what is important to young people and families to include in our research. We will also ask the best ways of telling people the findings from the research. The work will be interesting and varied.

We are asking you to:

  • Attend meetings by Zoom – on average 2 hours every 2 months.
  • Provide your views and feedback by email on plans and documents in between meetings – perhaps 1 hour per month
  • Share your views and experiences as a family member or carer of a young adult with cerebral palsy in this Advisory Group

The Parent Advisory Group will start as soon as possible and continue until early 2025, but you are free to be involved for as long or short a period as you wish.

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 on:

Wednesday May 26th 1pm to 3pm.