With the advent of Universal Newborn Hearing Screening and changing criteria for implant recipients, parents may be faced with the decision for cochlear implantation shortly after receiving the initial diagnosis of hearing loss. This creates the need for extra care and counseling at a time when families are trying to grasp a diagnosis that has sent them into unchartered territory.
Professionals may help parents through the decision-making process in the following ways: (See Dr. David Luterman's article: Counseling Parents About Cochlear Implants, the ASHA Leader, May 27, 2003).
Allow parents time to mourn their child's hearing loss
Beginning the implant candidacy process shortly after the diagnosis can be helpful for some families as they feel as if they are taking action and doing something about the "problem" as they perceive it. Families who move quickly to an implant may view it as a "fix" or become so busy focusing on "what to do" that they don't take time to deal with the feelings associated with the diagnosis. Typically, families have been involved in a flurry of appointments from the time of diagnosis (IFSP meetings, weekly visits from the early interventionists, doctors appointments, etc).
Professionals ought to allow for some quiet time to sit down with families, to reflect on what has happened. Time for reflection will often bring feelings to the surface that need to be acknowledged. Audiologists may encourage a family to reflect upon their experience by asking a question such as "When did you first suspect that your child had a hearing loss?" Professionals may already know this information from having reviewed the patient's medical chart; however, hearing it through the parents' words and emotions will provide a depth of information that cannot be discovered in a chart review.
Be prepared for parents to go into great detail as they tell their stories. Families have described the day of diagnosis as a life-altering experience and often have vivid memories of that day for many years to come. Allow adequate time for them to talk. Listen carefully and provide information in a sensitive way.
Addressing the family's emotional needs will be especially important as they face the decision of implantation.
Referrals to counselors trained to work with families experiencing hearing loss will be helpful. While going through the decision-making process, it is often helpful to provide referrals to other families who have chosen to implant their children as well as to those who have not. Remember that parents can provide emotional support in ways that most professionals cannot.
Refer families to support groups
Parent-to-parent support is beneficial for families new to the diagnosis of hearing loss. When deciding about a cochlear implant, it will be helpful for families to talk with various people. They may want to talk with a members of the Deaf culture to get their opinions and/or get involved with parent organizations such as Hands and Voices. These organizations try to remain neutral in their approach with families regarding amplification choices, communication modality and teaching philosophy. Support from such a group can be comforting to parents - allowing them to explore options and gather information in a "safe" environment that supports their decisions in a nonjudgmental way.
Allow parents to make the final decision
Over time, families with children who have hearing loss will be required to make many decisions. The professional's role is to provide information and guidance as families negotiate their way through various opinions and options. Professionals knowledgeable about deafness have a responsibility to prepare parents for the issues related to hearing loss and cochlear implants. Well informed parents will feel confident in whatever decision they make and will be better equipped to withstand the various opinions that come their way. Professionals ought to avoid persuading families in their decision-making. Families need to own the choices that they make.
Once a decision has been made, professionals can assist families by encouraging them to fully commit to whatever they choose in order to maximize the child's potential. Committing to a particular communication modality or teaching philosophy requires a whole-hearted effort on behalf of parents. Professionals will want to encourage families to learn as much as possible about the approach they have chosen, and to do all that they can to support the efforts of the team with whom they are working. It is helpful for parents and professionals to establish a time line for monitoring the child's progress with the chosen approach. Generally, progress should be reviewed every six months to a year depending on the age of the child. Professionals hope to see month for month progress (e.g. 12 months language growth within one year) in children who are experiencing a good "fit" in the approach that has been chosen. Audiologists are important members of the team as they gather objective diagnostic information that assists professionals and parents in evaluating a child's progress. Ensuring that the child is properly amplified, and that equipment is operating correctly is obviously an important piece of the overall picture. Parents and professionals alike depend on the audiologist to provide information and services that often influence their decisions about program placement and modality choices.
Assist parents in understanding the big picture
Professionals need to identify for families the factors that lead to successful outcomes with implants. These factors include:
- Consistent device use
- Attendance at regular programming appointments
- Device maintenance and repair as needed
- Placement in an educational setting that is appropriate to the child's needs
- Available support and quality intervention services for children who have hearing loss
- Realistic expectations about what their child may achieve with the implant
- A strong family network
