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Eyes on Communication
A Delphi Study to build consensus on content of clinical guidelines for assessment and implementation of eye-gaze control technology for children, adolescents and adults with cerebral palsy.
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INFORMATION ABOUT THIS PROJECT
We invite you to take part in a study.
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Our study is called: Eyes on Communication. It is about using eye-gaze control technology.
We are inviting people from all around the world, who know about eye-gaze control technology, to complete three online surveys.
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Who we are
We are a team of people with cerebral palsy, their families, clinicians and researchers. We come from Australia, the United Kingdom, Belgium and Sweden. Our team leader (chief investigator)
is Dr Petra Karlsson, a Senior Research Fellow at Cerebral Palsy Alliance Research Institute at The University of Sydney, Australia.
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What this project is about
Children and adults with cerebral palsy who have a significant disability and are unable to talk may benefit from using eye-gaze control technology to use a computer for play, communication,
learning and work. We will ask for your thoughts about the best ways to help people with cerebral palsy use eye-gaze control technology. We plan to use the information to develop "clinical practice guidelines". These will provide the best possible information
to people with cerebral palsy, their families and clinicians about using eye-gaze control technology.
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Who will take part in this study
We are inviting people who use eye-gaze control technology, as well as their families and friends. We are also inviting clinicians like speech pathologists/speech and language therapists
and occupational therapists who work with eye-gaze users, researchers in the field, teachers and suppliers of eye-gaze control devices.
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What we will ask you to do and how long it will take
Our study uses a Delphi process to find out the most important information to include in the clinical practice guidelines. This Delphi processes uses three online surveys. The table
below tells you what each survey is for and when you will receive it.
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If you agree to participate, the link to the first survey is at the end of this information. We will email you the link to the other two surveys.
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The possible benefits to you
You may learn more about eye-gaze control technology from the responses of other people completing the survey, as they will learn from your responses. You will be improving our knowledge
of the important things to consider about eye-gaze control technology and this will make a difference to people with cerebral palsy and significant physical disability world-wide.
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The possible disadvantages to you
One disadvantage could be the time it takes you to fill in the surveys.
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Your privacy
In each of the surveys, we will ask you your first name and email address. This is so we can send you emails with the links to Surveys 2 and 3, reminders to complete the survey, and
to email you the results of the study. We will not tell anyone else you are in the study and we will not give your name and email address to anyone else without your permission. Your survey answers will be combined with those of others who are involved in
the study, so it won't be possible to identify you or what you told us in the surveys.
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If you do not want to continue being in the study
You are free to leave the study at any time. You can either email us and let us know not to send you more surveys, or simply do not respond to the next survey we send you. We will use
any information you have already given us because we won't be able to tell which is yours.
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When the study finishes
After Survey 3, we will know the most important things to include in clinical practice guidelines and we will email you these findings. We will share the guidelines widely to clinicians,
researchers and people with cerebral palsy and their families so that they all benefit from the work you did together with our team. We will also make sure you know about any other resources we develop.
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Who has approved this study
Cerebral Palsy Alliance Human Research Ethics Committee has reviewed our project and consider that this study will protect your rights, well-being and privacy.
Who to contact if you are unhappy about the study
Please contact: Cerebral Palsy Alliance Human Research Ethics Committee on (02) 9975 8000 or email xxxxxx@cerebralpalsy.org.au
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How to contact the study team
Dr Petra Karlsson
Chief Investigator
Research Fellow, Cerebral Palsy Alliance, The University of Sydney
Email: xxxxxx@cerebralpalsy.org.au
Mob: + 61 447 508 661
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What to do if you would like to take part in the study
Go to:
https://redcap.sydney.edu.au/surveys/?s=K7YKWTK99T
Thank you!
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