2. Study Team: Dr M Gladstone, Dr. R Kumar, Dr. M Rekha, Ms. S Montague, Ms. M Mitchell, Mr. W Newman Thank you to Parents, children & professionals who took part in the study!!

3. Hemiplegia – background Study – what it is about Initial findings and themes Way forward

4. Often attend mainstream schools Increasingly complex needs in high school Range of difficulties Educational/Learning Visual & visuo-perceptual (PIQ and VIQ disparity) Coordination Behavioural

5. Guzzetta et al 2001 Dev Med Child Neurol 43: 321-329 Acuity Visual fields Optokinetic nystagmus Coherence and motion adherence problems * Attentional difficulties * Neglect of affected side

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7. Visual problems often missed Children not sent routinely Questionnaires and tools: Functional questionnaire in CP (McCulloch) Visual skills inventory - neuro impairments (Ferziger) Atkinson Battery for Child Development for Examining Functional Vision (<4 yrs)

8. To create and adapt a clinical questionnaire to identify functional visual problems in children with hemiplegia. Objectives: To understand experiences of parents & children with hemiplegia To understand experiences & perspectives of professionals To pilot a tool to identify those children with hemiplegia who may have functional visual problems.

9. Little previous investigation of day to day life and effect of functional visual problems Need to explore + understand the current situation for families and children STEERING GROUP: Focus groups/scrap books Day to day life and visual difficulties encountered

10. Carers /parents of children with hemiplegia Children 9-18 yrs hemiplgia Mainstream school Professionals (O.T, physio, sensory teacher, orthoptist, ophthalmologist, neurologist FGD -3987 In depth interviews 54 Scrap books 5 Recruited through Community Physiotherapy Department in Alder Hey Childrens NHS Foundation Trust. Thematic content analysis Framework approach NVIVO computer software

11. Parents & children – stations on day to day activities Parents – FGD on their own Children – play activity vision My/the day....my/the week....activities....what I/she or he likes doing..... What gets in the way...(vision)

12. My week....my day... Things which were good.... Things which were challenging.....

13. Information – who gives it and when Co - Morbidities Hidden issues/excuses Independence and coping Identity and roles Attitudes of others School knowledge of condition Increasing demands in high school Unpicking what is what..

14. We came here three times before we were told it was cerebral palsy They told us that he wont be able to walk or deaf, blind, everything….. I I felt as if once I took her back I was given all the correct information She was about a year or so Especially when we first found out and things like that I couldnt fault Alder Hey whatsoever, they were brilliant. And the GP thought it was shoulder displacement and sent her to the orthopaedic surgeon EvEven though weve been told to physio and stuff like that but nobody ever told me that she has got cerebral palsy.... The first response I got was We cant all have ten fingers and ten toes

15. Information giving...along the way WHO GIVES IT AND WHEN III have never had anyone say well look out it could affect her in this way But with the physio…they would always get back to me kind of thing We just carried on with the physical exercises from….her physio and I would talk to…..about things They give me loads of information about like SCOPE and all things like that Good support because all the way through it…..with the physio

16. Hidden issues../excuses..... Its nothing we have ever really thought about – never been an issue.. ….when youve got a child with the issue…youre just used to that child…thats them.. Perhaps we just take for granted or do on autopilot...they have difficulty with it and you are just caught up and swept up along the way. There is a noticeable thing that they dont necessarily see things....and then I think if its anything to do with his epilepsy but just thought he was clumsy never even thought about it....just being lazy

17. Independence and coping I have got to leave everything ready for him. I have given her the opportunity to develop them walking to school and walking home because it will be good for you and I think that some parents especially with a child with disability Ive got to let go at some point but I dont know how she would manage on her own really.. We tend to overcompensate for that, so we will just go and do the things and she will just sit there... …I keep his shoes in one place so he can go to the same place always to find them...

18. Do we have to talk about only that – cant we talk about what is nice? Street dancing Ballet Football Gymnastics Boccia

19. . People think I cant do things but when they say that it used to make me feel bad, now I mostly ignore it..when people make negative comment it spurs me on and I try to prove them wrong. She hides it so well and thats another reason probably why the teachers didnt realise But she doesnt really want anybody to know. She really is embarrassed about it She likes to think that she is anything, that theres anything – um different or about her..

20. School knowledge and transitions.. they need to let people know and they never because she nearly chopped her hands off in wood work because she wont ask for help because she doesnt want anyone to know they were very aware in primary school the school only know what I have told them and a lot of the time the school is massive and they have got over 900 children.. She said I always wondered why she wore a splint and that was her deputy head...that was in her second to last year in school. the physio..would like go into..school and the occupational therapist..... So they give them information whereas when they get to senior school they dont she is just like a little fish in a big sea really in the senior school

21. MATHS and GRAPHS Cant see what its like the other way round Struggling with graphs and maps All the graphs…I think there are issues where she struggles with that…she struggles with maths, mirror images WRITING Like a 7, a 7 was always the wrong way a t and a f they were always like the wrong way

22. Just with his reading particularly reading black type on a white background Copying from the board…takes a bit longer He does struggle because he forgets what to write down..by the time…if he takes his eyes off the board to write it down… He gets frustrated when he has to read from a white book…says he cant keep up with reading a book like other kids and is much slower than when he reads from a coloured… They might be able to distinguish them aurally and they can hear the sounds but to actually see the picture of the shape of the letter is something really difficult for them Vision or something else? READING and SCANNING

23. FINDING THINGS Vision or something else? Take your tablets…theyre not there! Theyre not there! And theyre right in front of him Go and get your hairbrush and the hairbrush can be there…I dont know whether its just lazy and cant be bothered…but its like she cant see the airbrush Can honestly say 99% she wont come back with what Ive asked. The odd 1% if its blatantly obvious that its right there ….shell find it Wheres my cap…it was in the other room...I described to her exactly where it was…as I walked in I could see it, it was just there and she couldnt see it, very strange Something that is not directly in front of her, like you know vision.....if its like in the periphery type of thing – she wont see it..

24. Vision or something else? DEPTH PERCEPTION Cant really like see in the water where the steps are …encourage her to go on the escalator…worries about placing her …feet in the right place because of the speed In the park…on a climbing frame. She is more hesitant as in judging where to put her feet….relies on ….friend …to make sure….her leg goes onto the next rung Occasions when he has fallen over things and said I didnt see it! I didnt see it! Sometimes does fall over…covered in bruises…maybe because she is not judging properly

25. SEEING THINGS MOVING FAST Things moving fast are either a blur or become invisible and almost see through them NIGHT VISION in dark, when he is walking he can see people but not very well

26. Trigenometry and shapes Using a computer and keyboard..neglect of one side Negotiating steps and curbs.. Catching a ball..anticipation Dinner ladies knowing they may not see all that is on their plate.

27. Seeing shapes/cutting round them visuo-motor integration Visual closure Seeing boundaries seeing things presented in a different way

28. More holistic approach to identifying issues for children with hemiplegia. Vision one of many issues that is not identified (need for a tool to identify children with issues) Vision needs to be addressed but also general learning difficulties, social and emotional issues, integration of children Need for clear targeted referrals and liaison at certain junctures of childs life with school and community services

29. Parent information and understanding of conditions/awareness of issue... School information and understanding of conditions Professional understanding of condition and training.

30. National survey Consensus processes Validation of tool Creating a pathway for children with hemiplegia. Lets not keep Out of sight, out of mind...