Transcript Sue Archbold - Frank Barnes School for Deaf Children

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
parents……
deaf children of deaf
3
0
Hearing Thresholds
20
s
dt
40
aw ah
f th
ay ee
60
80
100
120
0.25
0.5
1
2
Frequency
4
8
kHz
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
5
Short term measure:TAIT analysis: Early
communication skills?
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)
 TAIT
 So……
 Tait
et al (2007)
 Comparing
those implanted at 1, 2 and 3
6
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
7
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+
8
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%
9
Changing communication: 3 phase
project
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
 Phase
10
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……
11
The Ear Foundation
Communication changes after
implantation: effect of age at implant on
changing use of sign
100
90
80
70
60
50
40
30
20
10
0
implanted under 3 years
old(n=29)
implanted between 3/5
years old (n=85)
implanted over 5 years
old(N=62)
pre
1 year
3 years
5 years
Watson et al, 2006
12
Those implanted young changing: Percentages using oral
communication or sign communication
implanted under three
90
80
70
60
50
40
30
20
10
0
pre
1 year after
3 years after
5 years after
13
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
14
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
7
towards spoken language
towards signed communication
15
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
16
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.’
17
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
18
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
19
“The Communication Journey”
CI
AFTER IMPLANTATION
BEFORE
Before
implant
IMPLANTATION
Most effective
communication
(oral or sign,
gesture)
Development of Spoken
supported by Audition
Language
Spoken Language
established –
increased interest
in use of sign: SSE
or BSL
Reduction f of Sign/SSE
20
Mum talking…about choices
21
It worked for me!
22
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
23
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…
24
Moving on from the old
arguments?
 Cochlear
implantation with the level of the
hearing it provides may help us do so
25
The Ear Foundation
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…
26
The Ear Foundation
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?
27
The Ear Foundation
Family and educational outcomes
 Educational
issues;
et al 2006 : 2853 children – 468 with
implants : improvements in educational
attainments, compared with those with
hearing aids
 Stacey
 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
28
The Ear Foundation
Reading….
 Reading
is key to educational attainment
 Traditionally
a major challenge for deaf
children
 Reading
levels predict later educational
attainments
29
The Ear Foundation
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)
30
The Ear Foundation
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
31
The Ear Foundation
5 years after implant: Gap (in years) v
Age at implant – Edinburgh Reading Test
DIFFERENCE BETWEEN READING AND
CHRONOLOGICAL AGE (5-YEAR INTERVAL)
3.00
2.00
1.00
0.00
0
1
2
3
4
5
6
7
8
-1.00
-2.00
-3.00
-4.00
32
-5.00
AGE AT IMPLANT
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
world…
with their identity…it’s a new
33
How can we facilitate the
journey?
 What
do young people say?
29 young people across UK – 1317years – used Nvivo software
 Interviewed
 Funded
by NDCS
34
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
35
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.”
36
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”
37
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
38
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
39
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.
40
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)
41
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
42
Conclusions

Booklet AND paper…

Wheeler et al, 2007, JDSDE

www.earfoundation.org.uk

Follow up projects: Now looking at their
needs in secondary school
43
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
A parents’ view….
“My biggest problem was the
over-expectation of family and
friends and the underexpectations of the
professionals.”
48