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Cerebral palsy: helping severely disabled children who use their eyes to communicate

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What did the project achieve?

“Our new eye-pointing classification scale is now helping medical professionals and families to better understand how well children with severe cerebral palsy can use their eyes to engage with the world around them and to communicate,” says Dr Michael Clarke of University College London. “Being able to understand how a child is using their eyes is absolutely critical in helping parents and professionals provide the right kind of support.”

Cerebral palsy is the most common serious physical disability in children, affecting around 2,000 babies born in the UK each year.1-5 The condition is usually caused by damage to a baby’s brain before, during or soon after birth, with a child experiencing lifelong difficulties with movement and coordination.

“Young people with severe cerebral palsy are often unable to speak and often rely on using their eyes as a way to engage with the world around them and communicate,” says Dr Clarke. “By looking at something they’re interested in, then looking at someone close to them, then back at that object, a child can use their eyes to ‘point’ to that thing.”

Understanding this behaviour – called eye-pointing – can help doctors to assess how a child’s brain has been affected and allows them to better tailor care to a child’s individual needs. But doctors who look after children with severe cerebral palsy can often struggle to tell how well a child uses this way of communicating.

“We have now completed thorough testing of a new classification scale involving 53 children with severe cerebral palsy,” says Dr Clarke. “Our results successfully proved that this was easy to use in real-life clinical settings by different people and gave consistent, reliable results.”

The scale has since been named eyePoint and made available to download for free. and has been downloaded more than 600 times by people in 35 different countries.  It is also now available in five languages and an App version was launched in 2019.

This research was completed on

Estimates suggest around one in every 400 children in the UK has cerebral palsy.1 These young people will experience lifelong difficulties with movement and co-ordination, and in some cases they may also have other difficulties, such as learning disabilities. For some children with severe physical disabilities and no speech, communicating through talking is not possible. Instead, these children are particularly reliant on using their looking skills to engage with the world around them. However, it can be difficult to know for sure how well children are using looking for communication. Dr Michael Clarke, of University College London, is developing a systematic way to assess this which will improve understanding of children’s individual needs and abilities, so they get the right sort of support.

Action Medical Research and Great Ormond Street Hospital Children's Charity are jointly funding this research.

How are children’s lives affected now?

Every year in the UK, up to 2,000 babies are diagnosed with cerebral palsy, the commonest physical disability of childhood.1-5 While some children have only minor problems, others can be severely disabled.

“Children with very severe cerebral palsy, who struggle to talk, and who cannot walk or use their hands effectively, experience significant difficulties communicating with others. It can also be difficult for others to understand what these children might be trying to tell them”.

 “Some children are able to use their eyes very effectively to point to things as a way of communicating” continues Dr Clarke. “For example, they might use their eyes to point at a toy they’d like to play with by looking at the toy and then looking back at you. This skill is called eye-pointing and although it seems like a very simple thing to do, effective eye-pointing calls on a number of different skills that not all children with severe cerebral palsy may have in place.  It can also be very difficult for people to understand whether a child is using their eyes to point to something to communicate about it or whether they are simply looking at it because it is interesting or new.  Being able to understand how a child is using their eyes to engage with the world around them is absolutely critical in helping parents and professionals provide the right kind of support.”

How could this research help?

“We’ve developed a new, systematic way to assess and classify how children with very severe cerebral palsy are using their looking skills to communicate and engage with the world around them,” says Dr Clarke. “In this project, we’re testing how well our new classification scale works in practice – whether it consistently gives reliable results when different people use it. Two speech and language therapists are separately using the scale to assess a group of 70 children with severe cerebral palsy, and we will compare their findings.”

Using the new classification scale involves carefully observing how young children behave when they’re looking around them – how they respond to the things they see and whether they can deliberately shift their gaze between those things and the people they’re with.

“Each child is different,” says Dr Clarke. “If our new scale reveals how well a child can use eye-pointing to communicate, we will have a much better idea of how best to support their communication skills now while developing new skills for the future.”

References

1. NHS Choices. Cerebral palsy. http://www.nhs.uk/conditions/cerebral-palsy/pages/introduction.aspx Website accessed 9 November 2015.

2. ISD Scotland. Births in Scottish Hospitals. Year ending 31st March 2013. Publication date – 26th August 2014. http://www.isdscotland.org/Health-Topics/Maternity-and-Births/Publications/2014-08-26/2014-08-26-Births-Report.pdf Website accessed 9 November 2015.

3. Northern Ireland Statistics and Research Agency. Births. Live Births, 1887 to 2014 (Excel). http://www.nisra.gov.uk/demography/default.asp8.htm Website accessed 9 November 2015.

4. Office for National Statistics. Births in England and Wales 2014. http://www.ons.gov.uk/ons/rel/vsob1/birth-summary-tables--england-and-wales/2014/stb-births-in-england-and-wales-2014.html Website accessed 9 November 2015.

5. Disability in childhood. http://www.patient.co.uk/doctor/disability-in-childhood Website accessed 30 December 2014.

 

 

 

 

Project Leader Dr M T Clarke, PhD MRCSLT
Project Team Dr J Swettenham, PhDDr J Sargent, MA MBBCh MSc MRPCHMrs C Rose Ms K Price, DipCST MA MRCSLTMr T Griffiths, MA BSc(Hons)
Project Location Department of Language and Cognition, Faculty of Brain Sciences, University College London
Project Location Other Neurodisability Service, Great Ormond Street Hospital, London
Project duration 18 months
Date awarded 31 May 2015
Project start date 1 February 2016
Project end date 30 November 2018
Grant amount £88,438
Grant code GN2409

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