Cochlear Implants for Deaf Children with Complex Needs

The issue

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Although hearing loss can be quite demanding for children to grow up with, children who are deaf/hard of hearing (DHH) are not protected from having additional disabilities or special educational needs. Approximately 30 – 40% of DHH children have additional disabilities, such as autism spectrum disorder, Down syndrome or other syndromes, cerebral palsy or other motor/physical challenges, intellectual disability, visual impairment and metabolic conditions. The cause for the special educational needs is for some children unclear because of the complexity of conducting differential diagnoses. Different conditions and disabilities affect each other. This can mean the child has greater difficulties in making the most of her residual hearing or in compensating her hearing loss by using other senses. An increasing number of DHH children with complex needs receive cochlear implants (CI), but since implantation for these children is still relatively new and because of the heterogeneity in this group of children, we know less about the benefits and challenges concerning auditory habilitation and education issues than we do for otherwise typically developing children with CIs.

What we know

DHH children with complex needs are generally referred for CI later than the norm. In addition, the assessment process takes longer for several reasons. The late referral, together with the prolonged assessment, results in a later average age for cochlear implantation in children with complex needs. Obviously, this is the case for children whose additional disability is identified before candidacy for a CI is considered. With expansion in newborn screening, it will be more likely that hearing loss is identified before other disabilities that are not obvious at birth.

The goals for CI in children with complex needs are often different from the traditional ones. Hearing and sensory input are more often expressed as goals, rather than speech and spoken language attainment.

Outcomes from CI are challenging to demonstrate for children with complex needs. Improved hearing can be achieved, but it might be difficult for the child to make use of her improved hearing. The diversity within the group of children with complex needs, also when it comes to outcomes of CI, makes it difficult to generalize knowledge about benefits from CI for these children. The outcomes seem to depend on the degree and amount of disabilities: Children with more than one additional disability and children with severe to profound intellectual delays have poorer auditory perception than the majority of children with complex needs. However, the degree of disability alone cannot account for variation in post-implant outcomes. Most children with complex needs gain access to sound after CI. Other reported outcomes apply to some, but not all children, and include:

  •     Improved communication and increased peer-interaction
  •     Improved quality of life
  •     Vocalization for those with severe complex needs, and spoken language for those with mild complex needs
  •     Improved sound and social awareness, the child is more open for contact with other people
  •     Many understand spoken language even if they do not develop intelligible speech

Improved communication skills are reported for a majority of children in this group. Progress in speech and language gains, however, is slower than for those children who do not have complex needs. Some children face challenges in wearing the CI processor. This can be due to involuntary movement, hypersensitivity or other reasons. Children who reject wearing the equipment will, of course, not benefit from their implants.

Communication modes vary, but the majority of the children are dependent on visual support of some kind. Many implanted children with complex needs and their families use a mixture of sign language, sign-supported speech, and speech supported with augmentative communication (e.g., pictures and symbols). Some families use sign language alone or spoken language alone.

What we don’t know

Although the body of research on cochlear implanted children with complex needs is growing, we still have a limited knowledge about interventions needed to support habilitation of each child. There is even less knowledge about disability-specific outcomes; for example, how children with Down syndrome – as a group – benefit from cochlear implantation. There is also a need for knowledge about how professionals manage care and service delivery to the families.

Implications

The diversity of the children and their needs calls for extreme caution in interpreting and generalizing research findings for this group. The complexity of the children’s needs necessitates a multidisciplinary approach at all stages and in all areas: In considering the appropriateness of implantation, in evaluation of outcomes, in habilitation, and in education. Parents should be valuable informants and collaborators at all stages. Measurement tools should be expanded and developed in order to describe a wider range of outcomes.

Posted on Oct 6, 2016 by
Lill-Johanne Eilertsen
Signo Resource Centre
lill.johanne.eilertsen {at} signo.no

Further reading