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!!

Hemiplegia – backgroundStudy – what it is aboutInitial findings and themesWay forward

• Often attend mainstream schools

• Increasingly complex needs in high school

• Range of difficulties• Educational/Learning• Visual & visuo-perceptual (PIQ and VIQ disparity)• Coordination • Behavioural

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

.

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)

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.

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

Carers /parents of children with

hemiplegia

Children 9-18 yrshemiplgia

Mainstream school

Professionals (O.T, physio,

sensory teacher, orthoptist,

ophthalmologist, neurologist

FGD -3 9 8 7

In depth interviews

5 4

Scrap books

5

Recruited through Community Physiotherapy Department in Alder Hey Children’s NHS Foundation Trust.

Thematic content analysisFramework approachNVIVO computer software

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)

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

◦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..

We came here three times before

we were told it was cerebral palsyThey told us that

he won’t 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

couldn’t fault Alder Hey whatsoever, they

were brilliant.

And the GP thought it was

shoulder displacement

and sent her to the orthopaedic

surgeon

EvEven though we’ve 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 can’t all have ten fingers

and ten toes”

Information Information giving...along the giving...along the waywayWHO GIVES IT AND WHENWHO GIVES IT AND WHENIII 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

◦“Its nothing we have ever really thought about – never been an

issue..”

“….when you’ve got a child with the issue…you’re just used to that child…’that’s 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 don’t 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”

“I have got to leave everything ready for him.

I have given her

the opportunit

y 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’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...”

…I keep his shoes in one place so he can go to the same place always to find them...”

◦ “Do we have to talk about only that – can’t we talk about what is nice?”

◦ Street dancing◦ Ballet◦ Football◦ Gymnastics◦ Boccia

.

“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”.

She hides it so well and that’s another reason probably why the teachers didn’t realise

“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..”

“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”

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 don’t”

“she is just like a little fish in a big sea really in the senior school

MATHS and GRAPHS

Can’t see what it’s 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

WRITINGLike a ‘7’, a ‘7’ was always the wrong way a ‘t’ and a

‘f’ they were always like the wrong way

Just with his reading

particularly reading black

type on a white background

Copying from the board…takes a bit

longerHe 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…

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?Vision or something else?READING and SCANNINGREADING and SCANNING

FINDING THINGS

Take your tablets…they’re not there!

They’re not there! And they’re right in front of

him

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

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..

Vision or something Vision or something else?else?DEPTH PERCEPTION

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

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

SEEING THINGS MOVING FASTThings moving fast are either a blur or ‘become invisible’ and “almost see through them”

NIGHT VISIONin dark, when he is walking he can see people but not very well

“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.”

“Seeing shapes/cutting round them” “visuo-motor

integration”

“Visual closure”

“Seeing boundaries”

“seeing things presented in a different way”

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

Parent information and understanding of conditions/awareness of issue...

School information and understanding of conditions

Professional understanding of condition and training.

National survey Consensus processes Validation of tool Creating a pathway for children with

hemiplegia.

Let’s not keep “Out of sight, out of mind...”