Meeting the needs of deaf children with cochlear implants

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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

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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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Hearing Thresholds
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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 measureTAIT 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, EH, 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 plt 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 plt 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
The Ear Foundation
Watson et al, 2006
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Those implanted young changing Percentages
using oral communication or sign
communicationimplanted under three
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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 childs 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 ltchilds namegt request.
• We have not dictated the communication methods
  but have followed ltchild's namegt lead he tells
  us to speak not sign.
• ltchilds namegt says he doesnt 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
• Childrens 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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The Communication Journey
CI
AFTER IMPLANTATION
BEFORE IMPLANTATION
Before implant
Development of Spoken Language supported by
Audition
Spoken Language established increased interest
in use of sign SSE or BSL
Most effective communication(oral or sign,
gesture)
Reduction f of Sign/SSE
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Mum talkingabout 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
The Ear Foundation

• We know that earlier implantation is more
  successful although we dont 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

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What about educational attainments?
The Ear Foundation

• Cochlear implantation is set in a
  medical/scientific context - the major goal is
  hearing
• Teachers of deaf children may have differing
  agendas..differing prioritiesdiffering goals
  what about educational attainments?

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Family and educational outcomes
The Ear Foundation

• 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

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Reading.
The Ear Foundation

• Reading is key to educational attainment
• Traditionally a major challenge for deaf children
• Reading levels predict later educational
  attainments

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Reading outcomes..
The Ear Foundation

• 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)

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Reading outcomes.. Nottingham Cochlear Implant
Programme
The Ear Foundation

• 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

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5 years after implant Gap (in years) v Age at
implant Edinburgh Reading Test
The Ear Foundation
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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 identityits 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 Im 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 dont like it if its not working because I
  dont know whats 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
• Im deaf but I hear with my implant.
• Had a flexible view of themselves- its a
  changing world
• Pragmatic about communication mainly used
  speech but valued sign too.

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Identity 2
Im a normal teenage boy Im a bit of both
when Im at the airport and theres all these
announcements I think Im deaf and weird! I do!
When Im at the deaf club I think Im deaf but
here with my family Im in the middle (female,
spoken language, congenital/genetic) To be
honest inside me Id say Im 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

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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

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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)

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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.