Wanted – Parents & carers of kids living with cerebral palsy
Researchers from Australian Catholic University are looking for parents and carers of kids aged 3 months-12 years who live with cerebral palsy (CP) or who are at high risk of CP to take part in a research project. The project will help work out how best to measure the vision of kids living with CP.
All we are asking for is up 40 minutes of your time to complete an online survey – that’s it!
You know best how your child uses their vision. Your help will ensure this new measurement tool is as good as it can be and will support kids in all areas of their development and learning.
Why is vision important? And why do we need to measure it?
Vision is important to all areas of development and learning. Vision motivates children to move, and early communication behaviours use a lot of visual skills. Vision is one of the earliest skills we can observe in young kids and may be one of the most important skills to develop within early intervention.
Understanding how well a child uses vision is relevant to everyone working with the child. Currently, there are no good ways to measure how a child living with CP uses vision in everyday activities. That’s why if you’re a parent or carer of a child living with CP or at high risk of CP we’d love you to complete this survey and help us to develop a new measurement tool.
If the tool is shown to work it might help us answer questions such as “how does this child use their vision?”, “is it important to consider their vision?”, “will use of vision improve?” and “what can be done to improve vision use?” We don’t have the answers to these questions now.
Did you know? Novita has a knowledge and innovation team that supports research projects. This is so Novita’s services for people living with disability are always best practice. In this case, Novita is supporting an Australian Catholic University PhD study being undertaken by Belinda Deramore Denver. Belinda is an Occupational Therapist and has over 13 years’ experience working with kids with CP and their families.
The full title of the project is ‘Testing the ‘Measure of Early Vision Use’ (MEVU) with parents of children with cerebral palsy’.
What will I have to do?
This study is testing a brand new measurement tool to better understand how kids living with CP use vision in everyday activities.
Researchers are looking for parents and caregivers of kids aged between 3 months and 12 years of age who have a diagnosis or high risk of CP. They would like to hear from parents and carers of kids with a range of visual abilities, from a good ability to use vision, to the ‘not so good’.
If you choose to take part in the project, you will be asked to complete an online survey that could take up to 40 minutes, depending on how many sections you complete. You do not have to complete the survey all at once so you can save your progress and continue later. There are some general questions about you and your child, the new measurement tool called the ‘Measure of Early Vision Use’ (MEVU) and an optional second set of questions that also ask about vision use.
The MEVU tool measures how well your child uses vision in everyday activities, interactions and environments. It describes typical performance in everyday activities, not best performance. To find out how a child uses vision in everyday activities we want to ask parents and caregivers who know the child well. MEVU asks questions about visual behaviours that can be observed by people familiar with your child – you!
The project is looking for 100 parents and carers from around Australia to complete the survey. If you choose to provide your email address to the research team, you may also be invited to participate in some further testing of the measurement tool.
Participants will remain anonymous in the findings. We hope the results will help all organisations to provide the best supports and services to kids living with CP.
What’s in it for me?
Knowledge of a child’s visual skills may also support them in many other areas of their development and learning. Some kids living with CP have strengths in using vision. It may be important to identify and measure these strengths to make sure kids receive the best services. Other kids living with CP might have eye problems that impact how they use vision, or they might have challenges in using vision for other reasons. Movement difficulties, cognition or processing skills and the environment can all influence how kids use vision.
If you are the parent or caregiver of a child with CP, taking part in this research will help establish a new measurement tool that may be used with other families in the future. We hope this may also help organisations like Novita to provide the best services for kids living with CP and support kids like yours to achieve their goals.
In the earlier parts of this research the team asked parents, carers and adults with a diagnosis of CP, and clinicians who work with kids and families to tell us how kids use vision, and the problems that they may have. They then developed the ‘Measure of Early Vision Use’ (MEVU) and tested and refined this by talking to a small number of families. The researchers are now ready to test the tool with a bigger group of parents and carers. With your help we can find out whether MEVU is a good tool for assessing how kids living with CP use vision.
You may find that answering the MEVU questions about your child gives you a different way to understand their performance in everyday activities. You may find this interesting and helpful. Completing the MEVU will also give a score that might also help you, your child and their therapy team with goal setting and planning and monitoring therapy.
What’s the aim of the research?
We hope the findings from this research will lead to a new measurement tool that can be used with kids with CP and their families.
It might help us answer questions such as “how does this child use their vision?”, “is it important to consider their vision?”, “will use of vision improve?” and “what can be done to improve vision use?” We don’t have the answers to these questions now.
With early identification and early intervention, we might be able to improve the visual abilities of kids in the future. We need measurement tools to describe problems and to show us whether interventions really work.
Sounds great. Sign me up!
If you are the parent or caregiver of a child living with cerebral palsy up to the age of 12-years we would love you to participate by completing this online survey.
You will remain anonymous in the research findings.