Study Team: Dr M Gladstone, Dr. R Kumar, Dr. M Rekha, Ms. S Montague,

1. BACD Paul Polani prize The creation of a questionnaire to identify functional visual impairments in children with Hemiplegia.“Out of sight, out of mind”

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

4. Hemiplegia.....It’s only “mild”. • 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. Visual disorders in Hemiplegia: • Acuity • Visual fields • Optokinetic nystagmus • Coherence and motion adherence problems • * Attentional difficulties • * Neglect of affected side Guzzetta et al 2001 Dev Med Child Neurol 43: 321-329

6. Subtle visual disorders .

7. Out of sight, out of mind? • 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. AIMS and Objectives • 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. Methods: qualitative • 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. Sampling: • Recruited through Community Physiotherapy Department in Alder Hey Children’s NHS Foundation Trust. Thematic content analysis Framework approach NVIVO computer software

11. Semi structured interviews Focus groups (FGDs) • 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. Scrap book with children • My week....my day... • Things which were good.... • Things which were challenging.....

13. Themes/ResultsParents and Carers • 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. Initial diagnosis in early years... “The first response I got was We can’t all have ten fingers and ten toes” And the GP thought it was shoulder displacement and sent her to the orthopaedic surgeon I I felt as if once I took her back I was given all the correct information We came here three times before we were told it was cerebral palsy They told us that he won’t be able to walk or deaf, blind, everything….. Especially when we first found out and things like that I couldn’t fault Alder Hey whatsoever, they were brilliant. EvEven though we’ve been told to physio and stuff like that but nobody ever told me that she has got cerebral palsy.... She was about a year or so

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 We just carried on with the physical exercises from….her physio and I would talk to…..about things Good support because all the way through it…..with the physio They give me loads of information about like SCOPE and all things like that But with the physio…they would always get back to me kind of thing

16. Hidden issues../excuses..... • “….when you’ve got a child with the issue…you’re just used to that child…’that’s them’”.. • “but just thought he was clumsy” • never even thought about it....just being lazy” • ““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 don’t necessarily see things....and then I think if its anything to do with his epilepsy” • “Its nothing we have ever really thought about – never been an issue..”

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 • …I keep his shoes in one place so he can go to the same place always to find them...” “I’ve got to let go at some point but I don’t 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...”

18. Children’s perceptions...aspirations • “Do we have to talk about only that – can’t we talk about what is nice?” • Street dancing • Ballet • Football • Gymnastics • Boccia

19. Attitudes of others.. “But she doesn’t really want anybody to know. She really is embarrassed about it” “She likes to think that she is anything, that there’s anything – um different or about her..” • . She hides it so well and that’s another reason probably why the teachers didn’t realise “People think I can’t 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”.

20. School knowledge and transitions.. “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 don’t” “they need to let people know and they never because she nearly chopped her hands off in wood work because she won’t ask for help because she doesn’t want anyone to know” “she is just like a little fish in a big sea really in the senior 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..” they were very aware in primary school

21. Unpicking it...VISION or something else? MATHS and GRAPHS All the graphs…I think there are issues where she struggles with that…she struggles with maths, mirror images Can’t see what it’s like the other way round Struggling with graphs and maps • WRITING • Like a ‘7’, a ‘7’ was always the wrong way a ‘t’ and a ‘f’ they were always like the wrong way

22. Vision or something else?READING and SCANNING 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 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 can’t keep up with reading a book like other kids and is much slower than when he reads from a coloured…

23. Vision or something else? Go and get your hairbrush and the hairbrush can be there…I don’t know whether its just lazy and can’t be bothered…but it’s like she can’t see the airbrush Take your tablets…they’re not there! They’re not there! And they’re right in front of him Can honestly say 99% she won’t come back with what I’ve asked. The odd 1% if its blatantly obvious that its right there ….she’ll find it Where’s 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 couldn’t 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 won’t see it.. FINDING THINGS

24. Vision or something else? DEPTH PERCEPTION Occasions when he has fallen over things and said ’I didn’t see it! I didn’t see it! Sometimes does fall over…covered in bruises…maybe because she is not judging properly Can’t 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

25. Vision or something else? • 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. Results/themes - professionals “Catching a ball..anticipation” “Dinner ladies knowing they may not see all that is on their plate.” “Trigenometry and shapes” “Using a computer and keyboard..neglect of one side” “Negotiating steps and curbs..”

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

28. WAY FORWARD/CONCLUSIONS • 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 child’s life with school and community services

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

30. Next processes: • National survey • Consensus processes • Validation of tool • Creating a pathway for children with hemiplegia. • Let’s not keep “Out of sight, out of mind...”