When we are working with families of children with hearing loss, especially newly identified children, we are anxious to share information that we think is critical. We (or at least I) want to get technology on babies within days, weeks at most, and get the baby into therapy. As part of this effort, we sometimes do not wait for families to be ready to hear us.
First, telling families that they have a child with a hearing loss is a shock to them. More than 90% of children with hearing loss are born to families with no history of hearing loss. They may hear the diagnosis but they are going to be stunned and may not be ready to hear anything else. They likely know little about hearing loss, certainly about hearing loss in children. They may know some adults with hearing loss who don’t like their hearing aids so they just don’t know what to think for their child.
Listening to parents
If we are going to help families accept the diagnosis and move on, it is critical that we know where the parents are emotionally. I have always found it helpful to just stop and wait after giving a hearing loss diagnosis. If parents don’t ask anything I ask them how they are doing. Some will cry, sometimes I get a remark like “how could I be”. Then I ask, what do you want to know. It is important to remember that they, likely, don’t even know what to ask. The kinds of questions we get are “Will it get better?” or “Will it get worse?”, Less frequently we may hear “ What do we have to do to correct it.”. If we know it is a sensory neural hearing loss we have to tell them that it is not going to get better.
Some parents are ready to move ahead as soon as they hear the diagnosis and want to know what to do next. They are ready to have earmolds made and to take appointments for ENT, hearing aid loan, early intervention, etc. Some parents say, they need to think about this before they move on. Some will accept a follow up appointment, others will not. Some feel the need for a second opinion before moving on. As a clinician, I worry about how much time it will take for families to be ready to move ahead. Two to four weeks are fine, but what happens when it stretches to 3-6 months?
What are parents really thinking?
Even if a parent moves ahead with earmolds, she or he may still be overwhelmed and not really be ready to move ahead. We need to be sensitive to that. Remember that most families know little about hearing loss when they receive the diagnosis. Most parents will go to the internet and see what they can find out. Some will be lead to sites that give them information about spoken language and others will direct them to sign language. They may come to the next appointment with a list of questions, which would be good. Some of the questions they will ask will be from information picked up on the internet and others will be from information obtained from others. We need to make sure that we can understand what the parents are thinking, what the underlying questions are, and where they are emotionally so that we know what kind of information we can provide for them.
Kinds of questions
Many parents want to start with the business issues and emotional issues are moved to the sidelines.
- Medical issues – type and degree of hearing loss, and medical treatment.
- Audiology diagnosis – Functional effect of hearing loss on auditory brain development, what can the child hearing with and without hearing aids, what does she understand. Parents will likely not understand that hearing aids do not “cure” the hearing loss and the child may not hear normally with hearing aids
- Technology issues – How do hearing aids work. The need to use them every waking hour. Are hearing aids the right technology, do we need baha’s or cochlear implants.
- Therapy – what kind, how often, where. Will therapy be enough? Do I have to provide therapy at home?
- Emotional issues – how do other families deal with this? How do I deal with family members who do not accept the hearing loss? Do I need therapy to deal with my issues?
- Meeting other families – is this a good idea? How can I meet other families?
- Long term performance of children with hearing loss
- Other appointments – genetics, ophthalmology, other
- How does all this get paid for?
When parents don’t ask the questions
Parents may not ask questions related to the topics listed above. They may not ask because they don’t know to ask or because they are embarrassed and afraid to ask. We, as clinicians, need to be aware that all these issues need to be discussed with families to help them maximize auditory and language development for their children. If families do not ask these questions, we, as clinicians, need to find a way to bring the topics up, and offer families the opportunity to discuss them and to ask questions. This is ongoing. Families may be able to ask questions in the early weeks, and as time goes on, new questions will come up or questions previously discussed will need to be revisited. It is absolutely critical that time be allowed at each and every appointment to allow time for discussion. We also need to be certain families feel that we are ready to listen to them and to answer their questions. This is best done if we are sitting facing them, not standing in the doorway clearly looking like we need to run off. I get that this is difficult. Time is always an issue in any clinic. But in my opinion, it is critical if we are going to help kids with hearing loss be the best they can be.