GUIDANCE FOR PEER COUNSELLORS
As you probably have already experienced yourself, Cicada (Cochlear Implant Club) is a strong network of people who have been through the process of being assessed and eventually received a cochlear implant.
There are many reasons why Cicada members enjoy arranging get-togethers often, but it comes primarily from being aware that the experience of a severe, profound or total hearing loss within a family is not readily understood by the general community. The sensitivity of people familiar with the complex aspects of this level of deafness on a day-to-day basis, makes them ideally suited to provide support, advice and companionship, which is quite different from what a clinician can provide.
The essential aspect of Cicada, within a cochlear implant program, is the personal touch. In many cases, it is essential for someone who is identified as a potential candidate for an implant to be introduced to the process in a casual and non-threatening manner. This allows the concept of an implant to mature in the mind of those who are not personally ready to launch into it.
Cicada meetings give the candidate a chance to observe implant recipients in an everyday situation, coping with noise, distractions, unfamiliar voices, and so on. It also allows family members to hear from partners of implant recipients of their experience as well, and this will prepare them for the supporting role as best they can. All this first-hand experience is a valuable addition to information provided by the clinical cochlear implant team. The main contribution of CICADA, as a volunteer support group is to arrange social gatherings and to help introduce candidates to existing implant recipients. The audiologists try to arrange a meeting between the candidate and a clinically appropriate implant recipient (with similar cause and history of hearing loss, age group, occupational situation, etc). However, candidates still need to meet as many implant recipients as possible to ensure they realise that there is a vast range of people and outcomes with an implant.
To assist Cicada members to be aware of the ethical and factual boundaries in their informal advisory role, here are a few reminders and not-so-subtle comparisons and examples.
- It is not ethical to comment unfavourably about an implant recipient’s hearing ability with others. Everyone must be aware that each person’s outcome with the implant represents their own personal best. It is a medical device. It is related to the type of deafness, degree of damage of the hearing system, duration of deafness prior to the implant, and a very long list of other factors. In many cases, the cochlear implant was, and is, the only opportunity for that person to keep contact with the world of sounds. There is no common goal to be reached. Each person is unique, before and after.
- It is not ethical to comment unfavourably about different cochlear implant programs and audiologists. Personal opinions, attitudes and styles will evidently vary between clinicians and programs, but they have no relevance to the perceived success, or otherwise, of an implant recipient’s hearing ability. It is detrimental to the profession and the well-being of implant recipients, not to mention to the reputation of Cicada, to insinuate inequalities or to deliberately create rivalry and comparisons.
- Everyone is not expected to hear near-normal with the implant. Here are some factors which have led to a perceived general improvement in outcome:
1) More refined patient selection criteria for an implant. Clinical experience has provided evidence by which the team might discourage someone from having an implant due to better prediction of poor outcome.
2) Better identification of type and cause of deafness, as well as improved pre-operative tests.
3) Patients are being referred for a cochlear implant at an earlier stage of deafness than previously, leading to better outcome.
4) Significant improvement of the implant’s speech processing capability over time. People who hear extraordinarily well again after the implant are more inclined to talk about it than those who have a more reasonable or modest improvement. Each person can only be compared to their own level of hearing prior to the implant.
- Hearing with a cochlear implant is not like normal hearing. Despite the number of people hearing extremely well with an implant in recent years, the implant cannot match the subtle nuance of normal hearing.
Think about this: Sound is in the mind of the beholder! It is very important not to allow candidates to have high expectation of near-normal hearing, especially right from the start. Only the assessment team can evaluate someone’s chances of achieving a given level of hearing – and this is a very complex process. For example, consider the following comparison. If a person, who has been paralysed in the legs for 20 or 30 years, is given a very fancy wheelchair for the first time, after some time of experience, he/she could be forgiven for swearing that it is just like walking and running. It provides the freedom, the speed, the confidence, zest for life and opportunity for new experiences, a feeling of renewed well-being, and a welcome relief for everyone in the family. However, someone who has only been paralysed for a short while, or has additional blindness or paralysed arms, he/she will have a very different view of the same fancy wheelchair experience. If the long-term paralysed person convinces someone that it really is like true walking and running, it may cause a permanently unfulfilled expectation, a feeling of failure, which no clinician or surgeon can extinguish. Appropriate counselling is all about meeting expectations with actual potential for achievement for a given individual and their circumstance.
- The hearing rehabilitation through a cochlear implant is a gradual process, not simply a surgical procedure. As a comparison, having an implant is very similar to having a baby. An expectant couple can have every imaginable test before the birth. However, the baby they will have, is the baby they will have, regardless.
The baby, as in the case of the potential outcome of the cochlear implant, will be the results of a combination of clinical history, physiology and individual circumstances. Similarly, the baby (cochlear implant) is also a developing entity, which will be influenced by the nurturing it receives and its environment. Its potential for growth can be enhanced, as much as it can be hindered, by conscious perseverance and expert guidance by experienced professionals, as well as continuing sensitive caring from family members who have appropriate expectations. Don’t expect immediate results.
- Counselling families who are considering a cochlear implant for their child should not be attempted without expert guidance by a Family Counsellor from the Cochlear Implant Program. For a child who was born hearing impaired, the learning of speech and language through a cochlear implant is entirely different to an adult’s experience. It is as easy to achieve as if someone asked you to learn to speak a foreign language by using Braille (system of writing and printing for the blind, with patterns of raised dots) or a vibro-tactile aid (hearing aid that converts sound patterns into vibration patterns which can be felt on the skin). Adult implant recipients will ultimately become a role-model to the younger generation of implanted children and are already a welcome support group for their families. Cicada members make an important contribution by sharing advice on making the most of the speech processor and the accessories, as well as by describing the actual limitations which the hearing parent and family would be able to identify with. We trust the above points ensure the continuing ‘sound advice’, so expertly provided by each and every implant recipient, to reach those who will follow in their path.
Monica Bray BA(Psych) DipAud MASA (CC) Senior Audiologist – SCIC Adult Program 2007