Page 1

Dear Parent/Guardian

You are invited to take part in a study about visual processing in school age children (5-18 years). The study is open to parents/guardians of all children age 5-18 years - children with and without disabilities, with and without visual impairment. 

Why are we doing this study?

All children receive a routine eye test through school. These tests primarily focus on the health of the eyes. However, the eyes are only one part of a large system that helps us to see. It is rare that eye tests consider the part of visual processing which is done in the brain. Cerebral Visual Impairment (CVI) is a visual impairment that is due to damage to the brain, not the eyes. It is one of the most common kinds of visual impairment in the developed world. Yet, it can occur without damage to the eyes and people with it may be unaware that their vision is any different to other people’s- so it can often be missed.

This study aims to see how many children might show behaviours which could indicate CVI. It aims to see whether there are any differences in response between those in different schools e.g. special school/mainstream and those with different characteristics e.g. those with learning disabilities and those without. This is done in the hope that it might encourage routine testing for CVI, as well as eye tests. The University of Edinburgh has granted ethical approval for this study.

What will I have to do if I take part?

If you agree to take part, you should press the next button below to completed survey. This survey should take approximately 10-15 mins and will ask you some questions about your child and their behaviour. Some of the questions concern behaviours which are thought to be more common in children with CVI, but the survey cannot ‘diagnose’ children.

Do I have to take part?

No. It is completely up to you to decide whether you want to take part. If you decide to start doing the survey, you can still change your mind up to the point when you have handed in the survey, or have submitted online. Because it is anonymous, we cannot identify your survey once it is submitted.

Is my information confidential?

All information you provide will be held confidential. You will not be asked to provide your name or your child’s name. All data will be stored using numerical coding for each participant. The information will form part of the MSc student’s dissertation. It may also be presented at a conference or published in a journal but you/your child would not be identifiable in any publication or presentation.

How will my information be stored?

The information provided will be kept encrypted on the University secure server and on the password protected personal laptop of the student researcher. It will be viewed only by the MSc student and her supervisors only.

What happens to my information after the study?

The anonymous data will be held by the study supervisors on a password protected university computer for seven years, after which it will be securely disposed of.

Does this study have ethical approval?

The study has been approved by the Ethics Committee of the Department of Health in Social Science and the local council.

Are there any risks or benefits with this study?

There are no known risks or discomforts associated with this research. There are no direct benefits for people who take part, however the information provided will contribute to understanding of visual processing in children.

What if I have other questions?

Please feel free to contact the student researcher, supervisors or an independent person with your questions:

Student researcher:       Fiona Gorrie, E: s1217639@ed.ac.uk

Supervisors:

Dr Karen Goodall

E: Karen.Goodall@ed.ac.uk

T: +44 (0) 131 651 3947

 

Professor John Ravenscroft

E: John.Ravenscroft@ed.ac.uk

T: +44 (0)131 651 6181

 

Independent Advisor

Dr Emily Newman

University of Edinburgh

E: Emily.Newman@ed.ac.uk

 

If you would like to make a complaint about this study, please contact:

Professor Charlotte Clarke, Head of School of Health in Social Science

Old Medical School

University of Edinburgh, EH8 9AG

E: Charlotte.Clarke@ed.ac.uk                                     T: +44 (0)131 650 4327