Johannesburg cochlear implant centre

INFORMED CONSENT

Name of child_________________________________________ Date_______________________
Parents______________________________________ Case manager________________________

The evaluations to determine whether your child is a candidate for a cochlear implant have been completed, and the results indicate that, as far as it is possible to predict, your child will benefit from a cochlear implant. The following information is
brought to your attention:

Factors which play a role in the success of a Cochlear Implant:

• Age at implantation
• Pre-implant duration of deafness
• Age appropriate sign or spoken language competence
• Previous use of hearing aids and listening experience
• Status of cochlea
• Family willingness to follow recommendations
• Enrol in speech, language, and listening therapy
• Return for follow-up appointments
• Educational and home environments that are supportive of cochlear implants
• Additional special needs

A Cochlear Implant CAN:

• Provide access to sound by bypassing the damaged hair cells in the cochlea
• Convert sound into electrical signals and send these signals to the hearing nerve and then the brain.
• Provide more access to speech information than hearing aids
• Provide improved speech perception for many children with intensive training
• Allow a significant portion of profoundly deaf children useful hearing and speech

A Cochlear Implant CANNOT:

• Interpret sound
• Provide full access to spoken language for all
• Provide enough benefit to allow a child born profoundly deaf to learn spoken language as easily or as quickly as is typical for a hearing child
• Outcomes will vary for each child
• Developing effective listening skills is a process

Operation and hospital stay

• Date of the operation:____________________________________________
• Hospital:_______________________________________________________
• Surgeon:_______________________________________________________
• Time to be at the hospital:_________________________________________
• Preparations for surgery:__________________________________________
  • Preparation of implant site
  • Extent of operation scar
  • Length of operation
  • Numbness around scar for some weeks
  • Head bandage
  • Slight raised area over internal receiver site
  • Length of stay in hospital usually one or two nights
  • The surgeon will explain about caring of the wound
• Take along:
  • For yourself: money for your own food and something to drink; toiletries and clothes if you are staying over night
  • For your child: favourite toys, pyjamas with wide necks or that can open in front so that it can easily slip over the head bandage
  • For the hospital: medical aid details (if you have one), authorisation number, CT scans & MRI

 Operation risks

• General surgical and anaesthetic risks – discuss with surgeon
• As the surgery is performed in the vicinity of the nerve that moves the muscles of the face, there is the rare possibility that temporary or permanent facial paralysis may occur
• There may be pain at the wound following surgery – this is typically temporary
• There is slight risk of taste disturbance, such as having metallic taste
• Residual hearing in the ear to be implanted will most likely be lost (although with improvements in the technology and surgical procedures, this is not always the case)
• Following the surgery, dizziness is sometimes noted
• There is a possible association between cochlear implants and meningitis. There is not a proven causal relationship yet established between the two. Nevertheless, as a precaution, vaccination against meningitis is prescribed.

Restrictions on medical treatments and activities

• Magnetic resonance imaging (MRI)
• Scuba diving, physical contact sports, such as rugby

Initial programming of electrodes

• Initial programming takes place approximately 3-4 weeks postoperatively
• The basic components of setting a program (also called a MAP), include determining threshold levels (T levels), comfort levels (C levels), and “flagging” (turning off) electrodes that may cause problems. A MAP is determined by setting each of the electrodes to be loud enough for a person to be aware of a sound, but not too loud to cause discomfort.
• During the initial programming session, an audiologist will seek to determine:
• The type of speech strategy to use
• The sensitivity setting
• Program choices
• Locks and controls

Programming and assessments

• Initial programming will be over a period of 2-4 weeks
• Follow-up programming sessions will be at 3 months, 6 months, 9 months, 12 months, 18 months and 2 years
• Assessment at the following intervals: 6months and 12 months. Annual or 6 monthly reviews will follow thereafter
• Assessments include hearing and speech perception testing, and speech and language assessment
• These visits may require you to be available for a period of 1-2 weeks if you do not stay locally
• Annual school reports are to be sent to your audiologist
• If your child receives other therapies, reports are required from these professionals

Costs

• Travel and accommodation expenses (where applicable)
• Cables
• Repairs/ availability of loaners
• Insurance
• Battery costs per month
• Therapy and assessment
• Income tax

Research projects

The Cochlear Implant centre is actively involved in a number of research projects and training. We see this as an integral and essential part of our programme. Our aims are to improve the greater understanding of the function of the hearing system and to improve our services to our cochlear implant users.

You will be invited to participate in research and training projects, but you are under no obligation to do so. These may involve additional visits.

Realistic Expectations

It is important for families to be realistic regarding their expected outcomes from cochlear implants. While the media often portrays cochlear implants as a “cure” for deafness, those directly involved in the educational process with implanted children are keenly aware of how individualised the outcomes may be for each implanted child.

It is important to acknowledge that although a cochlear Implant provides an opportunity for a deaf child to develop spoken language skills, it is not a guarantee. Deaf children present varied and wide-ranging characteristics related to her age, history, progress, and development that will impact on their degree of success with a cochlear implant.

Any questions?

__________________________________________________________________

__________________________________________________________________

___________________________________________________________________

As a requirement for your child to have a cochlear implant you must undertake to make your child available to attend all necessary electrode programming and evaluation sessions, required speech & language therapy sessions, as well as regular at an appropriate school setting.

I/We have been informed about the financial implications of the long term management and maintenance of the cochlear implant and all its parts.

Signed by parent/ caregiver______________________________________________
Witnessed by__________________________________________________________
Case manager_________________________________________________________
Date_________________________________________________________________