The Dilemma of Pediatric Cochlear Implants Parent Perspectives

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. n What do parents do next? n Contact with deaf people pre-implant. n Some of the reasons why parents decided to get an implant for their child. n Perceptions of the relationship with health professionals and the cochlear implant center. n

n Perceptions of how their child is doing with the implant. n 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. n Internal parts: Receiver, wire capable of electrical stimulation extending into the cochlea. n Components “meet” above the ear where they are magnetically joined. n A CI is designed to do the job of the nonfunctioning hair cells in the cochlea and stimulate the auditory nerve fibers. n

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

Candidates for a CI (con’t) n Both the child’s parents and, when appropriate, the child, should be highly motivated to develop speaking and listening skills.

Two research projects: n GRI study (Spring 1999): 12 -page questionnaire distributed to more than 1, 800 parents of children with implants around the U. S. n 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). n 1, 739 implanted children identified (out of 48, 564); not all currently using the implant (c. 16% not using it) + 102 others. n Program administrators were asked to forward the questionnaire to parents. n 439 questionnaires returned directly to GRI (out of 1, 841; 24% response rate). n

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

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) n 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. ” n 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. ” n

Searching for answers (con’t) Hearing aids, and learning to sign were common first steps for many parents. n 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. ” n

Searching for answers: Initial contact with health professionals (C/L study) n When trying to determine if their child was deaf, parents frequently complained about insensitive audiologists and, especially, pediatricians.

n. 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. ”

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

n. 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… n …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. n 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: n Two main reasons for implantation: n Ease in development and use of oral spoken language: 52% n Child’s safety or environmental awareness: 25%

Reasons…(C/L study): n 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… n …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. ” n But deaf community views have changed in recent years. n

NAD Position paper (2000): n “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. ” n “The NAD recognizes the rights of parents to make informed choices for their children…”

Many parents… n …still see their child as deaf after the implant. n 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). n 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. n

From the GRI study: n Current mode of communication in school: About ½ speech only; ½ sign or speech & sign. n 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): n Sign language interpreter: 40% n Teacher aide/assistant in the classroom: 37% n Closed or real-time captioning: 24% n Classroom amplification system: 16% n Oral interpreting: 13% n Note taker: 11% n

From the GRI study (con’t): Parental evaluation of child’s reading and mathematics skills compared to child’s hearing peer group: n Reading/reading readiness: 59% judged by parents to be “far behind” or “slightly behind” hearing peers. n Math or number handling: 37% judged to be “far behind” or “slightly behind. ” n

Recommended interventions: Parent perspectives (C/L study) n 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) n 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. n 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. ”

n 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. n After the first year with the CI, 54% said they were “very satisfied” with their child’s progress. n At the present time, 67% said they were “very satisfied. ” n In the C/L study, most parents said the CI either met or exceeded their expectations. n

But… Respondents in both the GRI study and, especially, in the Christiansen and Leigh study, are clearly skewed towards satisfied parents of CI children. n 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. n