The Dilemma of Pediatric Cochlear Implants: Parent Perspectives

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The Dilemma of PediatricCochlear
ImplantsParent Perspectives

• John B. Christiansen
• Irene W. Leigh
• Gallaudet University
• Washington, DC

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Two recent research projects with the goal of
understanding parent perceptions on a number of
issues, such as

• How parents discovered their child was deaf and
  some of their reactions to this usually
  unexpected news.
• What do parents do next?
• Contact with deaf people pre-implant.
• Some of the reasons why parents decided to get an
  implant for their child.
• Perceptions of the relationship with health
  professionals and the cochlear implant center.

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• Perceptions of how their child is doing with the
  implant.
• Post-implant interventions Communication and
  education.

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What is a cochlear implant?
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(No Transcript)
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What is a cochlear implant (cont)?

• External parts Microphone, speech processor,
  transmitter, cords.
• Internal parts Receiver, wire capable of
  electrical stimulation extending into the
  cochlea.
• Components meet above the ear where they are
  magnetically joined.
• A CI is designed to do the job of the
  non-functioning hair cells in the cochlea and
  stimulate the auditory nerve fibers.

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Candidates for a CI

• Should be 12-18 months or older
• Should have a severe to profound bilateral
  sensorineural hearing loss (90 decibel loss for
  children 70 decibel loss for adults)
• Should receive little or no benefit from hearing
  aids

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Candidates for a CI (cont)

• Both the childs parents and, when appropriate,
  the child, should be highly motivated to develop
  speaking and listening skills.

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Two research projects

• GRI study (Spring 1999) 12-page questionnaire
  distributed to more than 1,800 parents of
  children with implants around the U.S.
• Christiansen and Leigh study (Summer and Fall,
  1999) 56 interviews with parents of 62 children
  with implants (and 1 without) in 15 states and
  Australia.

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GRI study

• Subjects selected from the 1997-98 Annual Survey
  of Deaf and Hard of Hearing Children and Youth
  (and from several other sources).
• 1,739 implanted children identified (out of
  48,564) not all currently using the implant (c.
  16 not using it) 102 others.
• Program administrators were asked to forward the
  questionnaire to parents.
• 439 questionnaires returned directly to GRI (out
  of 1,841 24 response rate).

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Christiansen and Leigh study

• Respondents selected from those returning the GRI
  questionnaire and several other sources.
• Current (1999) age range 2 - 20 years. Age at
  implantation 15 months - 17 yrs.
• Typical child about 4 years old at the time of
  the implant and has used the implant for about 4
  years.
• See J. Christiansen and I. Leigh, Cochlear
  Implants in Children Ethics and Choices,
  Gallaudet U. Press, Dec. 2001.

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Parent perceptions Some reactions of parents to
diagnosis (C/L study)

• A huge loss, mad at the world, shocked,
  depressed, frustrated, a tragedy, sad,
  scared for what the future would bring,
  devastated, afraid, confused, a
  nightmare, the worst thing that had ever
  happened, in denial, and feeling the need to
  grieve.

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Parent reactions (cont)

• A mother recalled that, For the first month Ive
  got this new baby, and Im singing to him, Im
  telling him how much I love him, and Im doing
  all this stuff and it was sad to think he might
  not be hearing any of it. Later in the
  interview this mother said I needed to have a
  test done to confirm it for me, and once it was
  confirmed I admit I cried in the parking lot for
  a good half-hour afterwards....

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What do parents do? Search- ing for answers (C/L
study)

• As one parent said The scariest part of it is
  that you dont know what youre supposed to do
  next. And no ones telling you there is no road
  map.
• A mother of a 4-year old girl said I have a
  distant cousin who did a graduate degree at
  Gallaudet. Shes hearing....The first thing she
  said to us was, Dont trust anybody in this
  business. And she was right on the mark.

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Searching for answers (cont)

• Hearing aids, and learning to sign were common
  first steps for many parents.
• A mother of a 5-year old boy recalls We were
  starving for information. We wanted to learn as
  much as we could. And they the audiologist
  gave us the names of some other people in the
  community who had recently had children diagnosed
  with deafness. And that was probably, for me,
  the most useful thing, other parents.

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Searching for answers Initial contact with
health professionals (C/L study)

• When trying to determine if their child was deaf,
  parents frequently complained about insensitive
  audiologists and, especially, pediatricians.

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• A mother of a 10-year old boy implanted at age 6
  said We suspected that there might have been a
  problem...when our son was maybe 4 or 5 months
  old. We noticed that he was not consistently
  responding to sounds. We were able to vacuum in
  his room when he was asleep, and it wouldnt wake
  him up....So we took him to the pediatrician and
  asked. The pediatrician snapped his fingers in
  front of our sons face and our son blinked.

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• Interviewer (seeking clarification) Snapped his
  fingers behind his head? Mother No, in front
  of his face. Interviewer (somewhat
  incredulous) In front of his face. Mother
  In front of his face....The pediatrician did
  not think there was a problem with our sons
  hearing. And, not wanting to believe that there
  was, we continued on for several more months.

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Parents

• overwhelmingly reported that the cochlear
  implant center did not pressure them into getting
  a cochlear implant for their child.

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• According to the father of a 2-year old boy
  implanted at 18 months The implant center
  would give us options and give us literature and
  then say, You make up your own mind.They
  wouldnt give us any real guidance at
  all....Handing my child over to a surgeon was
  probably one of the hardest things I ever had to
  do. And I dont know that they could have
  increased that doubt any more.

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Parents

• generally did not jump into the decision to get
  an implant for their child. Many parents went
  through a lot of soul searching before deciding
  to go ahead.
• Reported a variety of reasons for getting the
  implant, such as safety, the opportunity to learn
  spoken language, and having more options in the
  future.

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From the GRI study

• Two main reasons for implantation
• Ease in development and use of oral spoken
  language 52
• Childs safety or environmental awareness 25

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Reasons(C/L study)

• A father of a 14-year old boy said It was not
  aplea to get an implant because we were
  desperate to have him speak. Mother If he
  could say I love you, that would be
  wonderful.I wasnt out to torture my child so I
  could have a hearing-speaking child.

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Many parents

• were quite unhappy with the perceived hostility
  from many people in the deaf community, and
  strongly object to anyone telling them what to do
  with their child.

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• A mother of a 7-year old girl implanted in 1996
  said I think it was a week before surgery and I
  got something fromthe deaf community. They sent
  me flyers of people that were against it and they
  kind of had pictures in there of kids that were
  all wrapped up and said that if I did that I
  would be a failure as a motherand that the
  doctor was just a neo-Nazi that was going to cut
  into the brain and make her Frankenstein.
• But deaf community views have changed in recent
  years.

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NAD Position paper (2000)

• The NAD National Association of the Deaf
  recognizes all technological advancements with
  the potential to foster, enhance, and improve the
  quality of life for all deaf and hard of hearing
  persons.
• The NAD recognizes the rights of parents to make
  informed choices for their children

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Many parents

• still see their child as deaf after the implant.
  
• A mother of a 7-year old girl observed I know
  my child is deaf, but her being deaf does not say
  thats who she is. Shes a child
  first....Deafness is a part of her, its not
  her....The implant doesnt fix the problem.
  The child is still a deaf child cause you take
  the implant off every day.

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Recommended interventionsParent perspectives

• Signing, especially signing with voice, is
  compatible with cochlear implantation. Many
  children with CIs sign after implantation, both
  at home and at school, and many parents feel that
  it is a vital part of their childs communication
  needs (along with speech and listening therapy).
• Many children with implants are mainstreamed, but
  virtually all of these children continue to
  require services of some type, and some are not
  performing at grade level yet.

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From the GRI study

• Current mode of communication in school About ½
  speech only ½ sign or speech sign.
• Classmate characteristics 32 only deaf
  classmates 30 only hearing classmates 38 both
  deaf and hearing classmates.

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From the GRI study (cont)

• Some examples of services the child currently
  receives in school (many receive multiple
  services)
• Sign language interpreter 40
• Teacher aide/assistant in the classroom 37
• Closed or real-time captioning 24
• Classroom amplification system 16
• Oral interpreting 13
• Note taker 11

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From the GRI study (cont)

• Parental evaluation of childs reading and
  mathematics skills compared to childs hearing
  peer group
• Reading/reading readiness 59 judged by parents
  to be far behind or slightly behind hearing
  peers.
• Math or number handling 37 judged to be far
  behind or slightly behind.

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Recommended interventionsParent perspectives
(C/L study)

• A mother of an 8-year old implanted at age 5
  said I can never see her not being dependent on
  an interpreter. If shes in a big auditorium
  with people, or even if shes sitting in the
  front rowto catch all of it, shes gonna need
  sign language.

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Recommended interventionsParent perspectives
(cont)

• A mother of an 8-year old implanted in 1996 said,
  Theres four deaf children in her classroom with
  20 hearing kids and what a neat thing that weve
  seen....She can communicate with her peers and
  they can talk to her. Its wonderful. And then
  when the teacher is up front lecturing she has
  the sign language interpreter so she knows
  exactly. You know, she can hear the teacher, but
  not good enough to catch everything.

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Persistent parental involvement, especially in
IEPs, is crucial.

• The mother of a 5-year old son implanted in 1996
  said Were in the middle of a little battle
  now....We want sign language....Socially hes
  lagging a little bit....Maybe he needs some
  social skills support group or some one-on-one
  play therapy. Thats what Im requesting
  now....They want to take away our sign language
  services...they wanted to take away all our
  services.

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• Interviewer They think he is doing just fine?
  Mother Right....The recommendation said no
  more direct services. Well call you in six
  months and see how hes doing. And I said,
  Nooooo way. No way. Father After all of
  the work wed done, do we want to see him now
  slide back?...We have both spent time in the
  classroom with him, just watching. And its
  clear that hes not...integrating into the
  classroom yet.

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Looking back

• According to the GRI study, 62 of the parents
  wish they could have gotten their child implanted
  earlier.
• After the first year with the CI, 54 said they
  were very satisfied with their childs
  progress.
• At the present time, 67 said they were very
  satisfied.
• In the C/L study, most parents said the CI either
  met or exceeded their expectations.

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But

• Respondents in both the GRI study and,
  especially, in the Christiansen and Leigh study,
  are clearly skewed towards satisfied parents of
  CI children.
• There is a great need to secure parent
  perceptions (as well as perceptions from the
  children themselves) from among those children
  who are not doing very well with the CI, or who
  have stopped using it entirely.