Transcript Cochlear Implants: Issues and Choices

The Dilemma of Pediatric
Cochlear Implants:
Parent Perspectives
John B. Christiansen
Irene W. Leigh
Gallaudet University
Washington, DC
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.

 Perceptions
of how their child is
doing with the implant.
 Post-implant interventions:
Communication and education.
What is a cochlear implant?
What is a cochlear
implant (con’t)?
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 nonfunctioning hair cells in the cochlea and
stimulate the auditory nerve fibers.

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
Candidates for a CI (con’t)
 Both
the child’s parents and, when
appropriate, the child, should be
highly motivated to develop speaking
and listening skills.
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.
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).

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.

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.”
Parent reactions (con’t)

A mother recalled that, “For the first
month I’ve got this new baby, and I’m
singing to him, I’m telling him how much
I love him, and I’m 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....”
What do parents do? Searching for answers (C/L study)
As one parent said: “The scariest part of it
is that you don’t know what you’re
supposed to do next. And no one’s 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. She’s hearing....The first
thing she said to us was, ‘Don’t trust
anybody in this business.’ And she was
right on the mark.”

Searching for answers (con’t)
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.”

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.
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
wouldn’t wake him up....So we took him
to the pediatrician and asked. The
pediatrician snapped his fingers in front
of [our son’s] face and [our son]
blinked.”
 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 son’s] hearing.
And, not wanting to believe that there
was, we continued on [for several
more months].”
Parents…
 …overwhelmingly
reported that the
cochlear implant center did not
pressure them into getting a cochlear
implant for their child.
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 wouldn’t 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 don’t know
that they could have increased that doubt any
more.”
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.
From the GRI study:
 Two
main reasons for implantation:
 Ease in development and use of oral
spoken language: 52%
 Child’s safety or environmental
awareness: 25%
Reasons…(C/L study):
 A father
of a 14-year old boy said:
“It was not a…plea 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 wasn’t out to torture
my child so I could have a hearingspeaking child.”
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.
A mother of a 7-year old girl implanted
in 1996 said: “I think it was a week before
surgery and I got something from…the
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 mother…and 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.

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…”
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 that’s who she is. She’s
a child first....Deafness is a part of her,
it’s not her....[The implant] doesn’t fix the
problem. The child is still a deaf child
cause you take the implant off every day.”
Recommended interventions:
Parent 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 child’s 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.

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.
From the GRI study (con’t):
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%

From the GRI study (con’t):
Parental evaluation of child’s reading
and mathematics skills compared to
child’s 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.”

Recommended interventions:
Parent 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
she’s in a big auditorium with people,
or even if she’s sitting in the front
row…to catch all of it, she’s gonna
need sign language.”
Recommended interventions:
Parent perspectives (con’t)

A mother of an 8-year old implanted in
1996 said, “There’s four deaf children in
her classroom with 20 hearing kids and
what a neat thing that we’ve seen....She
can communicate with her peers and they
can talk to her. It’s 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.”
Persistent parental involvement,
especially in IEPs, is crucial.

The mother of a 5-year old son implanted
in 1996 said: “We’re in the middle of a
little battle now....We want sign
language....Socially he’s lagging a little
bit....Maybe he needs some social skills
support group or some one-on-one play
therapy. That’s what I’m requesting
now....They want to take away our sign
language services...they wanted to take
away all our services.”

Interviewer: “They think he is doing just
fine?” Mother: “Right....The
recommendation [said] no more direct
services. We’ll call you in six months and
see how he’s doing. And I said, ‘Nooooo
way. No way.’” Father: “After all of the
work we’d done, do we want to see him
now slide back?...We have both spent time
in the classroom with him, just watching.
And it’s clear that he’s not...integrating
into the classroom yet.”
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 child’s
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.

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.
