A Long and Winding Road: Supporting Children and Families on the CI Journey
We’ve all seen the heartwarming videos of cochlear implant switch-ons: The baby who giggles upon hearing his mother’s voice. The teenager who cries happy tears when she hears her own voice for the first time. These magical video moments are wonderful to watch and help create an awareness and appreciation of the amazing benefits of modern hearing technology.
Participants in our Cochlear Implant Journey Seminar describe what they think families and practitioners need to help a child thrive with a cochlear implant.
Of course, these videos capture only brief moments in a journey that lasts a lifetime. For families of children diagnosed with hearing loss, the journey that begins with a newborn hearing screening carries through years of rehabilitation, speech and language therapy and decision making on education options, hearing technologies and much more.
What resources do parents need to make informed decisions for their children at each step along that journey? To explore that question, the Ida Institute invited a multi-disciplinary group that included surgeons, speech therapists, audiologists, teachers, and a psychologist to participate in a family-centered CI Seminar in Skodsborg, Denmark. The 21 professionals representing 14 different countries joined with Ida staff and advisors to take a long view of how the needs and attitudes of children with cochlear implants, and those of their parents, grow and change throughout childhood.
The most important thing for a family to do is enjoy their child!
— Lise Lotte Bundesen, Ida Institute Managing Director
A successful CI journey
Seminar participants began with a broad overview of current research and their own experiences of the many factors that contribute to a successful CI journey. Research shows that early diagnosis leads to the best outcomes, and that quality early intervention and rehabilitation are needed to support the diagnosis. The children and families that fare best are those that receive ongoing counseling and emotional support.
One key component of a successful journey is the ongoing involvement of someone who can help guide children and families through the transition phases. Equally important is providing the tools needed to achieve the outcome that everyone hopes for: A healthy, independent child, and a family that can provide the support the child needs.
What is the necessary structural support?
· Good case coordination help for families (especially families of children with multiple disabilities)
· Government support and understanding for children and families
· Streamlined services to make it easier to participate in therapies
· Information over time/for transitions: screening, expectations, medical, rehab, school, psycho-social
Support from the beginning
Support is crucial throughout the CI journey and begins with the newborn hearing screening. When the screening shows that the infant has a hearing loss, it is up to the professionals conducting the assessment to remember that they are delivering news that will likely be very difficult for the parents to accept. Emotional support is key, and hearing care professionals need to show sensitivity.
Ida seminar participants agreed that counseling should be readily available for families at all stages of the CI journey. They voiced empathy for parents, who must be nervous about sending their infants into surgery.
Parents also require more practical support in terms of information and resources. After learning that their child is a candidate for a cochlear implant, parents have to determine which implant would be best for their child. While many welcome the power to choose, parents often need help making their decision.
Resources and challenges
For some families, the challenges begin even before they can choose the implant. The CI surgery may not be covered by their private insurance or their country’s healthcare system. The Ear Care Foundation, headed by Ida Advisory Board member and CI Seminar Faculty Member Sue Archbold, released a report in 2014 encouraging wider availability of cochlear implants in the UK.
For all children who undergo CI surgery, intensive rehabilitation increases the chance for a successful outcome. In an ideal world, one parent would be able to devote all of his or her time to the child’s therapy. For most families, this is simply not a realistic option. They need access to therapies, exercises they can do at home with their child, appropriate schooling options, and the ability to make an informed decision about whether it’s better for the child to continue in a special school or be mainstreamed.
Counseling also plays a vital role in helping families cope with the emotional challenges of raising a child with special needs. Sadly, even when there is psychological and emotional support available to families of hearing impaired children, the stigma associated with hearing loss that still exists in some cultures may prevent parents from seeking help.
A family-centered future
Ida Institute will work with the ideas generated at the CI Seminar to create child and family support tools that will suit a multi-disciplinary approach to meeting family needs at different stages of the child’s life.
“The needs of children with hearing loss and their families continue to evolve as the child grows,” said Ida Institute Managing Director Lise Lotte Bundesen. “We recognize that there is no one size fits all solution that will address every child at every stage of the CI journey. Our aim is to create tools with the flexibility and adaptability needed to empower hearing healthcare professionals to support families in putting the needs of the child first.”
Exploring the CI journey from a family-centered perspective gave seminar participants an opportunity to consider both the challenges and joys of raising a child with hearing loss. “The message we’ve all taken away,” said Lise Lotte, “is that throughout the CI journey, the most important thing for a family to do is to enjoy their child!”