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LESSON 170

Sharing the diagnosis with families

Year 2
Spring semester
Pediatric Audiology
Pediatric assessment
Duration: 10:39

How do we share a child's hearing loss diagnosis with the family? In this lesson we cover the family's grief process, preparing for the meeting, clear and empathic language, example phrases, and the referral steps from diagnosis to early intervention.

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Hello, and welcome to the AIHEAR Audiology Academy.
In this lesson we will learn how to share a child's hearing loss diagnosis with the family in a clear and empathic way.
With example phrases, we will cover the family's emotional process, planning the first meeting and referral to early intervention.
Most children with hearing loss, more than 90 percent by commonly reported figures, are born to hearing parents.
Most of these families saw the refer result as a temporary problem and are not ready for the diagnosis.
Families can recall in detail how they first heard the diagnosis, even years later.
In moments of anxiety and shock, a person's capacity to process new information drops markedly.
So much of what is said in the first meeting may not be retained.
Still, this meeting is the first step in a long-term relationship of trust between the family and the team.
A well-run first meeting makes it easier for the family to attend later appointments and take part in intervention.
Many families go through a grief process after the diagnosis; the loss here is the idea of the expected, typically hearing child.
The first reaction is often shock; the family hears what is said but cannot make sense of it.
Then come thoughts of denial, such as the test may be wrong or the baby will grow out of it.
Anger and guilt are also common; parents may question things they did or did not do during pregnancy.
Sadness appears together with worries about the child's future.
Over time the family accepts the situation and takes action for the child; this is called adjustment.
These stages need not happen in order or only once; the family may move back and forth.
Feelings can resurface at new milestones, such as the hearing aid fitting or starting school.
The audiologist's job is not to speed up this process, but to notice where the family is and speak accordingly.
Before the meeting, review all test results and make sure they are consistent with each other.
Presenting uncertain information to the family as certain damages trust later on.
Choose a quiet, private room where you will not be interrupted, and switch off your phone.
If possible, suggest that both parents, or a relative who can support the family, attend together.
Allow enough time for this meeting so the family can ask questions afterward.
Have visuals such as the audiogram and the speech banana, and a short written note for the family, ready in advance.
If the baby will be in the room, set up a comfortable arrangement so the parent can hold the baby.
If a parent has hearing loss or the family speaks another language, arrange a suitable interpreter in advance.
At the start, briefly ask what the family expects, then state the result clearly without a long preamble.
Using the words "hearing loss" instead of vague phrases helps the family understand the situation correctly.
Instead of jumping to terms like sensorineural, choose plain language such as a loss coming from the inner ear.
After stating the result, do not keep talking right away; leave a short silence so the family can react.
If the family is crying or silent, acknowledge the emotion first; return to technical information when the family is ready.
This applies the distinction between informational and adjustment counseling from the introduction to counseling lesson.
Finally, clearly invite the family to ask questions; "what is on your mind?" often opens the door.
Now let us look at example phrases; these are not from a real meeting but were prepared for teaching.
Saying "the tests show that your baby has hearing loss in both ears" is much clearer than a vague phrase.
Quick reassurance such as "don't worry, you'll get used to it" is well meant, but it brushes aside the family's feelings.
Saying "I can see this is very hard news for you" acknowledges the feeling.
Explaining the cochlea, the nerve and hearing aid technology all at once is too much for a family in shock.
An invitation such as "what is the first question on your mind?" lets you steer the meeting to the family's needs.
When the family is ready, explaining the result with a visual tool makes abstract numbers concrete.
This example drawing shows the region that speech sounds occupy on the audiogram and an example threshold line.
Sounds that fall below the threshold line are sounds the baby cannot hear without hearing aids.
In this example some of the vowels can be heard, but most high-pitched consonants cannot.
This kind of explanation shows the family why the baby may have hearing loss even though they react to some sounds.
Infant thresholds are estimated with tests such as the auditory brainstem response; explain that behavioral tests will refine them.
Giving the visual to the family also makes it easier for them to explain the situation to relatives at home.
After diagnosis, the child is referred for a medical evaluation of the cause; genetic and eye examinations may be added.
In Türkiye, the diagnosis is made by a physician; the audiologist explains the test findings and rehabilitation within their own scope.
If the family chooses hearing aids, fitting should not wait; the Joint Committee on Infant Hearing advises fitting within a month.
Before fitting, the family is told about the options, expectations and why the aids should be worn during all waking hours.
Early intervention is family-centered language and communication support built into the family's daily life.
Options for communication approaches are presented to the family in a neutral way; the decision belongs to the family.
Meeting other families who have been through a similar process, and family associations, is strong support for many families.
Do not try to explain everything in the first meeting; two or three key messages are usually enough.
For example: your baby has hearing loss, there is a lot we can do for it, and the next step is on this date.
At the end of the meeting, give the family a short written note with these messages and a way to contact you.
Ask the family to explain in their own words what they remember from today; this is called teach-back.
This is not a test for them, but a check of how clearly you explained.
Planning a second meeting soon allows you to answer the questions that come once the first shock has passed.
Families often ask similar questions in the first meetings; the first and most common is whether the child will be able to talk.
Without making firm promises, you can explain that early diagnosis and intervention are among the most important factors for language.
The second common question is whether the loss is permanent.
The answer depends on the type and cause of the loss; for example, a temporary middle ear problem is not the same as sensorineural loss.
The question of why it happened often cannot be answered in the first meeting; the family is told the cause will be investigated medically.
Some families may ask this question again and again out of guilt; this is also part of the grief process.
For questions about future children, the family can be referred for genetic counseling.
The shared principle for all these questions is to be honest and offer hope, but not to promise anything uncertain.
A tip from the field: when the family asks "is this my fault?", do not jump straight into a technical explanation.
First acknowledge how heavy the feeling behind this question is.
If the cause of the loss is not yet known, say so honestly and explain that the cause will be investigated.
Instead of guessing about something you do not know, say that you will ask the physician or the genetic counselor.
Honest and consistent language is what builds the family's trust most in the long run.
In this lesson we saw that most children with hearing loss are born to hearing families and the diagnosis is often unexpected.
Families may feel shock, denial, anger, sadness and adjustment; this process is not linear.
Stating the result clearly and simply, leaving silence and responding to emotion first are the core principles.
Information is chunked and backed up in writing, and the family is referred promptly to medical evaluation and early intervention.
Test yourself: a mother hears the diagnosis and cries quietly. What should the first step be?
The correct answer is B: acknowledge the feeling and wait.
Technical information given in shock is not retained; acknowledging the feeling first lays the ground for later information.
In the next lesson we will see how we adapt tests for children with additional conditions such as autism, cerebral palsy or vision loss.
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