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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
1
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?
2
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……
3
sthfdt
ooaw ah ayeem n ng
Hea
rin
g T
hre
sho
lds
0.25 0.5 1 2 4 8 kHz
Frequency
0
20
40
60
80
100
120
5
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
6
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
7
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
8
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+
9
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%
10
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
11
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……
12
Communication changes after implantation: effect of age at implant on changing use of sign
0102030405060708090
100
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
13
Those implanted young changing: Percentages using oral communication or sign communicationimplanted under three
0
10
20
30
40
50
60
70
80
90
pre 1 year after 3 years after 5 years after
14
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
15
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
16
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
17
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.’
18
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
19
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
20
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
21
Mum talking…about choices
22
It worked for me!
23
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
24
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…
25
Moving on from the old arguments?
Cochlear implantation with the level of the hearing it provides may help us do so
26
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
27
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
28
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
29
Reading….
Reading is key to educational attainment
Traditionally a major challenge for deaf children
Reading levels predict later educational attainments
The Ear Foundation
30
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
31
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
32
5 years after implant: Gap (in years) v Age at implant – Edinburgh Reading Test
-5.00
-4.00
-3.00
-2.00
-1.00
0.00
1.00
2.00
3.00
0 1 2 3 4 5 6 7 8
AGE AT IMPLANT
DIF
FE
RE
NC
E B
ET
WE
EN
RE
AD
ING
AN
D
CH
RO
NO
LO
GIC
AL
AG
E (
5-Y
EA
R IN
TE
RV
AL
)
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…
33
34
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
35
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
36
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.”
37
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”
38
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
39
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
40
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.
41
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)
42
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
43
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”
46
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. “
47
48
A parents’ view….
“My biggest problem was the over-expectation of family and friends and the under-expectations of the professionals.”