Meeting the needs of deaf children with cochlear implants

Sue Archbold

The Ear Foundation

Shaping the future for deaf children in London, Camden, 7 May 09

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Times have changed…..

First paediatric cochlear implant in UK 1989 – The Ear Foundation in Nottingham……

And now?

What do we know?

What have we learned?

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And now?

The majority of profoundly deaf children have implants – over 4,000 in UK

Increasingly in first year of life

Increasingly in teens….

Increasingly complex children

Increasingly bilaterally implanted - or hearing aid and implant…

Increasingly deaf children of deaf parents……

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sthfdt

ooaw ah ayeem n ng

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0.25 0.5 1 2 4 8 kHz

Frequency

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Very early implantation

Evidence of safety and effectiveness:

Lesinski et al (2006) : safe and effective in first year of life

Svirsky (2006) – implanted at one doing better than at two

Dettman et al (2008) implanted under one development of spoken language in normal development.

National Libraries for Health – via www.earfoundation.org.uk

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Short term measure:TAIT analysis: Early communication skills?

TAIT video analysis – we know that communication skills before implantation predict later progress and at one year after implantation predict progress at three years after implantation (Tait et al, E&H, 2000)

So……

Tait et al (2007)

Comparing those implanted at 1, 2 and 3

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Margaret looked at Non Looking Vocal Turns)

33 children implanted at 1+ (1.0 – 1.11)

33 children implanted at 2+ (2.0 – 2.11)

33 at 3+ (3.0 – 3.11)

Children implanted at Nottingham Cochlear Implant Programme

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Non Looking Vocal Turn Results one year after implant

3+: NLVT mean: 15.4%; median 5%

2+: NLVT mean: 19.5%; median 20%

1+: NLVT mean: 66.3%; median 71%

Children implanted at 1+ scored significantly higher after 12 months than children implanted at 2+ or 3+

Statistical significance: p< 0.0001 between 1+ and 2+ or 3+; NS between 2+ and 3+

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Communication changes in early implanted children

12 months after implantation

3+: Sign 82%, Oral 18%

2+: Sign 70%, Oral 30%

1+: Sign 15%, Oral 85%: p< 0.0001

1+ 6 months after implantation: Oral 61%

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Changing communication: 3 phase project

Phase 1 – 176 children who had received an implant at least five years previously at Nottingham Cochlear Implant Programme: looking at communication mode over time

Phase 2 – Questionnaires sent to families of 284 children who had received a cochlear implant at least 5 years previously, asking why changes had taken place….

Phase 3 – 12 families selected for interview to look at the issues further

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Phase one

176 children from Nottingham Cochlear Implant Programme

All those implanted for at least five years….

Documented whether using oral or signed communication, before and annually after implantation

Does communication mode change over time……

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Communication changes after implantation: effect of age at implant on changing use of sign

0102030405060708090

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pre 1 year 3 years 5 years

implanted under 3 yearsold(n=29)implanted between 3/5years old (n=85)implanted over 5 yearsold(N=62)

Watson et al, 2006

The Ear Foundation

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Those implanted young changing: Percentages using oral communication or sign communicationimplanted under three

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pre 1 year after 3 years after 5 years after

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Phase 2 - Aims

Phase 1 showed that children change their communication mode after cochlear implantation BUT

We did not know what factors contribute to this

Phase 2 examines what parents/carers thought contributed to change of communication between sign and speech: by questionnaire

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Parents of 142 children replied…

We asked about communication mode before implant and currently (at least five years after) on a five point scale: entirely sign, mainly sign, about equal, mainly speech, entirely speech.

120 indicated a change in communication choice

113 towards spoken language

7 towards signed communication

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They were then asked to comment on 10 statements about possible reasons for a change of communication

The three statements with which parents most strongly agreed:

Want most effective means of communication

Want the most useful means of communication

Change was led by the child’s preference for spoken language

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Sample comments…

“It was a very natural and child driven change to spoken language. He prefers spoken language both receptively and productively.’

‘Our communication mode has always been motivated by <child’s name> request.’

‘We have not dictated the communication methods but have followed <child's name> lead … he tells us to speak not sign.’

‘<child’s name> says he doesn’t need sign language any more.’

‘The change was made because we followed our child's lead once spoken language began to develop.’

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One statement on which they were neutral

Parents neither agreed not disagreed with the statement that they were following the advice of the teacher of the deaf

Take no notice of professionals’ advice?

Parents make their decisions independently of advice from professionals (fits with aim of professionals to provide parents with unbiased advice so they can make an informed choice) Watson et al, JDSDE, 2007

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Phase 3: Interviews with 12 families

They discussed a “communication journey”

Different strategies may be used at different times

Children’s needs changed over time

Main goal was spoken language but a value of sign input too….

Wheeler et al, CII, 2008

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Most effective communication

(oral or sign, gesture)

AFTER IMPLANTATION

Development of Spoken Language supported by Audition

Reduction f of Sign/SSE

BEFORE IMPLANTATION

Spoken Language established –

increased interest in use of sign: SSE

or BSL

CI

“The Communication Journey”

Before implant

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Mum talking…about choices

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It worked for me!

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Moving on from the old arguments

Many parents and young people see a role for some sign too….

Although spoken language is the major goal… and attainable for the majority

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Challenge the old views

Is there a role for Sign Supported English?

The world of deaf young people has changed and will continue to change……

They want new options…

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Moving on from the old arguments?

Cochlear implantation with the level of the hearing it provides may help us do so

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We still have a problem…

We know that earlier implantation is more successful although we don’t know yet how early…

So we need to advise early implantation - but

We also know that there are important things for parents to do with a young baby…

The Ear Foundation

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What about educational attainments?

Cochlear implantation is set in a medical/scientific context - the major goal is hearing

Teachers of deaf children may have differing agendas……..differing priorities…differing goals… what about educational attainments?

The Ear Foundation

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Family and educational outcomes

Educational issues;

Stacey et al 2006 : 2853 children – 468 with implants : improvements in educational attainments, compared with those with hearing aids

Thoutenhoofd, 2006 : Scottish data to show children with implants outperformed those with hearing aids, particularly in maths

Damen et al, 2006,2007: children with implants did less well than hearing children in mainstream schools – similar results to Mukari et al

The Ear Foundation

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Reading….

Reading is key to educational attainment

Traditionally a major challenge for deaf children

Reading levels predict later educational attainments

The Ear Foundation

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Reading outcomes..

Geers (2003) found over half scored within the average range for hearing children (181)

Geers,Tobey and Moog (2005) when retesting group later found that some were struggling with reading at secondary level – higher order language skills required

(Vermeulen 2007) Reading comprehension of children with implants significantly better than those without, but still delayed compared with hearing peers (50)

The Ear Foundation

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Reading outcomes.. Nottingham Cochlear Implant Programme

Reading age :(Edinburgh Reading Test): 105 children, implanted under 7

Measure: The difference between their reading age and their chronological age: net reading age

A child of 9 with reading age of 9 scores 0

A child of 9 with reading age of 10 scores +1

A child of 9 with reading age of 8 scores -1

Archbold et al, 2008

The Ear Foundation

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5 years after implant: Gap (in years) v Age at implant – Edinburgh Reading Test

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-1.00

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AGE AT IMPLANT

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The Ear Foundation

What do we know? children and young people with implants are:

Using them

Increasingly going to mainstream schools

Increasingly using spoken language

Reading at improved levels

Pragmatic about their use and use of sign..

Comfortable with their identity…it’s a new world…

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How can we facilitate the journey?

What do young people say?

Interviewed 29 young people across UK – 13-17years – used Nvivo software

Funded by NDCS

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Results All except two wore all of the time

Benefit: Rating 1-5 all gave a score of 3 or above

Occasional non-use: Swimming! Bathing/shower etc Sports Very noisy situations/Headache

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Cochlear Implant

Decision-Making Mostly parental on behalf of child Some mid –late implanted young people

making the decision for themselves

None criticised their parents:

“ I respect them for making that decision”

“I was too young to understand but I’m OK with that.”

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Advantages?

All mentioned positive things:

“Yes cochlear implants work because you can hear more, talking to friends, understand everything, go out and have a good time.”

“Without the implant I would not manage.”

“I don’t like it if it’s not working because I don’t know what’s happening”

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Disadvantages

Some disadvantages:

“In noisy situations it is hard to hear people talking”

Four mentioned headaches

Three complained the post aural processor fell off during sports

Two mentioned not liking going to hospital

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Family and Social Relationships

Family Positive about communication

Friends Mostly a mix of hearing or deaf Flexible communication skills, speech and/or sign

depending on need.

Social gatherings Groups for meeting other implanted Teenagers

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Identity Deaf or hearing?

15/29 ‘Deaf’ 7/29 ‘Hearing and Deaf’ 6/29 ‘Hearing’

“I’m deaf but I hear with my implant.” Had a flexible view of themselves- it’s a changing

world Pragmatic about communication – mainly used

speech but valued sign too.

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Identity 2

“I’m a normal teenage boy”

“I’m a bit of both –when I’m at the airport and there’s all these announcements I think I’m deaf and weird! I do! When I’m at the deaf club I think

I’m deaf but here with my family I’m in the middle”(female, spoken language, congenital/genetic)

“To be honest inside me I’d say I’m hearing because I can hear what everyone else is saying”

(male, spoken language, congenital)

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Educational Issues Cochlear Implant

Implant helps understanding in classroom (76%) Sign support is as important as CI (7%)

Need visual clues – but may be different to those previously provided for profoundly deaf

Use of note-takers rather than signed support

Pre-class preparation

Address the acoustics in the classroom

Teaching styles

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Conclusions Booklet AND paper… Wheeler et al, 2007, JDSDE

www.earfoundation.org.uk

Follow up projects: Now looking at their needs in secondary school

European wide study asking what is needed...– the strongest message from parents and

professionals……. Training for local professionals was by far the most

common issue to be raised by parents and professionals –

Especially in mainstream, for teachers and classroom assistants, - the need for long-term management, the management of technology –

early support was not continuing, new teachers need training, support into adulthood – better local services and links with cochlear implant centres.

Supported by Cochlear Europe

Parents’ talking….

“Need to realize that ci is not a quick “fix” and the children still need support in whatever educational provision they are in whether signing or oral, mainstream or special”

“Most day to day support is from parents and teachers – they need to be well informed”

“Our son had implant at brilliant centre, and was sent to school with little knowledge… we have been fighting for an education which will help him to develop his CI use best” (Archbold & Wheeler, submitted)

Review of parents’ needs after cochlear implantation…(with NDCS)

“It is dreadful in my experience. It is incomprehensible that my daughter could receive £60K worth of technology and no clear plan about how to enable her to make best use of it. Complete waste of resources with lots of people 'involved' in her care but doing very little of any use other than endless assessment. Thank goodness for the voluntary sector. CI centre care great at technical support”

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Review of Parents…. (NDCS)

“The message needs to be sent out loud and clear that CI is not a miracle cure for deafness. Our son is doing extremely well with his CI but because of this, he is regarded as not needing support, which is wrong. “

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A parents’ view….

“My biggest problem was the over-expectation of family and friends and the under-expectations of the professionals.”