Counseling Parents About Cochlear Implants Back in the 1960s, when I was a diagnostic audiologist, the patient I most dreaded to see was the young child with a profound hearing loss. Despite our best efforts, this was a child we could not help a great deal. The best I could do at the time was ... Features
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Features  |   May 01, 2003
Counseling Parents About Cochlear Implants
Author Notes
  • David Luterman, is professor emeritus at Emerson College in Boston and director of the Thayer Lindsley Family-Centered Nursery for children with hearing impairments. Contact him by e-mail at dmluterman@aol.com.
    David Luterman, is professor emeritus at Emerson College in Boston and director of the Thayer Lindsley Family-Centered Nursery for children with hearing impairments. Contact him by e-mail at dmluterman@aol.com.×
Article Information
Hearing Disorders / Hearing Aids, Cochlear Implants & Assistive Technology / Features
Features   |   May 01, 2003
Counseling Parents About Cochlear Implants
The ASHA Leader, May 2003, Vol. 8, 6-21. doi:10.1044/leader.FTR2.08102003.6
The ASHA Leader, May 2003, Vol. 8, 6-21. doi:10.1044/leader.FTR2.08102003.6
Back in the 1960s, when I was a diagnostic audiologist, the patient I most dreaded to see was the young child with a profound hearing loss. Despite our best efforts, this was a child we could not help a great deal. The best I could do at the time was prescribe two rather clunky and limited binaural body hearing aids and provide a visual-based (speechreading) treatment program. The result was usually a child who was eventually educated within a school for the deaf and who had limited oral communication skills and severely impaired English language skills.
With the advent of somewhat earlier detection and improved amplification in the 1970s, this child was later able to wear powerful binaural behind-the-ear hearing aids. We could provide more aural-based treatment, which yielded a child with improved communication skills; however, the child still had speech, language, and educational limitations. Although more of these children entered the educational mainstream, it was not always with success. In many cases, the child was able to compete academically with normal hearing children, but failed socially. The strain of constantly having to be alert to speechread and to hear took a toll. Many of these “successful” orally educated children rebelled and eventually became leaders in the 1990s movement to reinstate American Sign Language into the education of children who are deaf. This movement flowered mightily during this decade, but now seems to be subsiding with the advent of newborn hearing screening and cochlear implants.
The Audiologist’s Dilemma
The cochlear implant has provided the clinical audiologist with a tool that can bring sound to many of these children with profound hearing loss. With early identification provided by newborn hearing screening programs and cochlear implants, the therapeutic landscape for a profoundly deaf child has improved immensely. Many audiologists have embraced cochlear implants so enthusiastically that they have begun to persuade parents of their value, sometimes at the time of diagnosis. It is very tempting for audiologists to assuage parents’ pain by suggesting an implant right away, as if this could cure the deafness.
While the therapeutic landscape has improved, the counseling issues have not changed. A persuasion model of counseling is not effective because the parent does not “own” the decision and will blame others if the outcome is not successful. This model of counseling reinforces the parents’ feelings of inadequacy and tends to lead to passive, dependent parents waiting for professionals to tell them what to do. The decision to implant a child is never easy for parents, and some opt to forego implantation, a decision that needs to be respected by the audiologist.
The dilemma for the audiologist is that there is now a device that, if used properly, can ameliorate many of the negative educational effects of deafness, and there are reluctant parents who seem to be dragging their feet creating the need to persuade them to do the “right thing.” Audiologists must learn to curb their unbridled enthusiasm and allow the natural process of mourning to take place. Once parents can come to grips with their child’s deafness, the decision-making process can occur. We must trust parents to ultimately make the right choice at the right time for their family, which is not necessarily the decision or the timing of the audiologist.
Supporting Parents’ Decisions
For the past 37 years, I have been facilitating a support group for parents of children recently diagnosed with hearing loss. With the advent of the cochlear implant, parents are now faced with an additional choice in a very complicated situation, and many agonize over this choice. From the parents’ perspective, the implant is elective surgery for an at-risk child. Many of the children with hearing loss have had a difficult birth or perinatal medical experience, so parents are reluctant to subject their child to further surgery. Even if the birth history was uneventful, most parents of children with special needs view the child as at-risk for further medical intervention.
The choice to implant is also life altering and must be made without consulting the child. All parents want to do right by their child and would love to be assured that their child will appreciate the decision to implant when she reaches adulthood. Of course, this assurance can never be given, and parents feel that they are flying blind when confronted with having to make such an important decision so early in the child’s life. This also holds true for many of the other decisions facing parents regarding communication methodology and educational placement. The militancy of some segments of the deaf community against the cochlear implant and the passionate advocacy by the auralists do not make these decisions easier. Parents are often bombarded with competing advice as to how to proceed, and often feel as though the opinion of the last person they consulted is the right one.
One father who decided not to implant his daughter said, “The decision to implant presents itself for decision at what is probably the most difficult time in our lives, shortly after learning that our baby or toddler has a permanent, fundamentally life-altering condition, and often immediately upon completing, albeit unsuccessfully, a hearing aid trial. These few months are hardly sufficient to place deafness in its proper perspective, hardly enough time to evaluate the arguments of the highly partisan participants in the cochlear implant debate, and probably not even a sufficient period to grieve.”
On the other hand, there is the parent who decides to implant without thinking through the consequences of the decision. The implant can easily fit into parents’ state of denial, which is a coping strategy commonly adopted by parents shortly after the diagnosis. These parents expect the implant to “cure” the deafness. As far as they are concerned, this device will “fix” the child and restore normal or near-normal hearing. The parents seldom listen to the contrary advice of professionals or realize that the implant is just one small step in the arduous process of educating the child. One father of a newly implanted child said, “The cochlear implant is just the small hill. There are mountains ahead of me.” This father realized at a profound level that when the implant was not on, his child was still deaf.
All parents of children with cochlear implants eventually come to the realization—some with a great deal of pain—that the implant is not a cure but a means to bring sound to a deaf child. In the initial stages of coming to grips with the fact that their child is deaf, many parents buffet themselves against the emotional pain by using denial. Unfortunately, the implant can feed into the denial and become, in the parents’ mind, the vehicle by which the child they were supposed to have is restored. These parents are invariably disappointed somewhere down the habilitative road.
This is not to say, or imply, that all decisions to implant are based on denial. The choice for an implant needs to be part of the entire grieving process, one that the parent arrives at after careful consideration. The best vehicle for accomplishing this is a parent support group. The group should afford the parents an opportunity to validate their feelings and experiences in an atmosphere of acceptance. There is no room for partisanship, and the group needs to be facilitated by a professional who has no point of view to promulgate or ax to grind relative to cochlear implants.
Every audiology practice should make a support group available to parents, not necessarily within the facility, but certainly within the community. Parents need contact with other parents, especially those who have gone through the process of implantation and those who have not. They also need time to work through the grieving and decision-making process. Only then will parents truly “own” the decision. As cochlear implants become more commonplace and the surgery almost routine, I am finding very few parents who decide not to implant their child. Nevertheless, there is usually hesitation that needs to be worked through within the context of the grieving process.
A Listening Approach
In order to be effective, counseling must be provided over time by a professional who is able to listen non-judgmentally and provide a safe environment for parents to work out the formidable issues surrounding the decision to implant. The professional working with the family as they consider an implant for the child should adopt a listening approach. Parents need information provided in a sensitive manner, but more importantly, they need someone to validate their hesitation and support their decision. A response such as “It must be so hard to think of your baby having surgery” can help parents begin the process of sorting out their feelings.
For parents in denial who see the implant as a panacea, the professional needs to listen and respond to their pain around the child’s deafness. A remark such as “It seems as though you expect the implant to cure your child’s deafness” might help parents recognize the denial. This parent might then come to recognize the role of denial in affecting th e decision to implant. If the timing is right, a remark such as “It must be so hard for you to accept your child’s deafness” can be very helpful to the parents. While the professional needs to warn the parents about the limited role that an implant can provide, contact with parents in denial should be focused on intense listening to hear and respond to their pain. Denial is a protective device, which is given up only in an emotionally safe environment; it never yields when parents are told they should not feel that way.
Audiologists involved with implantation usually work within a team structure that can present challenges in counseling because coordination among team members is needed. While the audiologist may be listening and allowing parents latitude in making their own decisions, other team members may not. The entire team must spend time discussing the counseling protocols to be followed, and if necessary, a facilitator should be brought in to bring the team to consensus. Parents have many issues to deal with in the early stages of diagnosis without being buffeted by conflicting counseling styles on the implant team.
All parents, despite the best efforts of the audiologist, harbor a secret hope that when the child’s implant is activated, he will start talking or certainly start responding to sound. (Parents also feel this way about hearing aids.) This is the “special case scenario” in which the parent feels that the norms don’t apply to them and that the hearing/speaking child they were supposed to have is lurking within, to be released by the implant. Parents seldom admit this secret hope and will often deny it if confronted. Grandparents are notorious believers in the “special case scenario,” and they often add stress to the parents’ tenuous acceptance of the reality that it is going to take considerable time and effort before the child responds to sound and is able to use the implant effectively. The “special case scenario” needs to be discussed with the parents before the implant is activated and again after the child has, or has not, responded. Parental disappointment can limit effective habilitation and must be dealt with early in the fitting process.
The implant provides a counseling challenge for both professionals and parents. At the same time, it offers the opportunity to bring sound to children who are profoundly deaf. It also presents a challenge for the child. Children who are deaf and have cochlear implants are new on the educational scene. These children are neither culturally deaf, nor are they hearing. The educational thrust and direction of early identification and cochlear implantation is clearly the mainstream. This means that these children will have to make their way through an educational and social environment that is not especially geared to their needs. Counseling and support is going to be needed within the school as well as the home. The technology is only as good as our ability to provide and support it. Mindful informational and emotional counseling needs to be an important component of the successful use of the cochlear implant.
Tips for Counseling Parents of Children With Hearing Loss
  • Parents need time to mourn their child’s hearing loss before they can begin to make good decisions about pursuing a cochlear implant.

  • Parental decisions need to be supported by the audiologist—a persuasion model of counseling is a poor one.

  • A parental support group may be the best resource to help parents reach an informed decision.

  • Careful listening and reflective responses used in conjunction with information presented sensitively are the best counseling tools.

  • Support will be needed for the child and the school system in order for there to be a successful outcome in using the implant.

Facilitating the Cochlear Implant Decision-Making Process

The following clinical scenario may work best in helping parents to make the decision about cochlear implantation:

  1. The child’s hearing loss is identified through a newborn hearing screening program.

  2. As soon as possible, family is referred for audiological confirmation of the hearing loss.

  3. The child is fit with a trial period of amplification and receives diagnostic communication treatment.

  4. The parents are enrolled in a program that enables them to work through their feelings so they are able to receive and process information.

  5. At the point when the parents have sufficient data about the benefit their child receives from hearing aids and they have achieved some emotional stability, an informed decision about cochlear implantation can be made.

For more information, see the “Year 2007 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs.”

Pediatric Cochlear Implant Candidacy Criteria

by Gail Linn

The criteria used to determine candidacy for cochlear implantation are constantly expanding due to technological advances and increased performance. Infants and children can now receive cochlear implants at 12 months of age, and those with abnormal cochleas and more residual hearing can become candidates.

To determine candidacy for infants and children, the preoperative evaluation is extremely important and comprehensive. The following test procedures are commonly used:

  • Medical evaluation assesses the child’s medical history, overall health, and treatment options, and a CT or MRI scan is performed on the temporal bone to determine and identify any anomalies of the cochlea. This information is often used to determine which ear to implant.

  • Audiologic evaluation determines the type and severity of hearing loss. The tests typically used are unaided air and bone thresholds, speech-reception thresholds, speech-detection thresholds, speech discrimination, and immittance testing (including tympanometry and acoustic reflexes). For children, electrophysiologic testing (ABR) is often the only way to determine thresholds.

  • Hearing aid evaluation considers the child’s aided speech-detection and speech-perception skills. These responses are compared with what is expected from the cochlear implant to determine the most appropriate intervention.

  • Speech and language evaluation determines the development of speech and language with respect to normative models. This information helps to define appropriate expectations for speech and language skills following implantation and develop treatment approaches.

Every implant center is slightly different, and these represent only some of the protocols and tests currently being used. But as technology moves forward, both the candidacy criteria and the evaluation protocols will change.

Gail A. Linn is ASHA’s director of audiology practice in industry and private practice. Contact her by e-mail at glinn@asha.org.

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May 2003
Volume 8, Issue 10