Never Having to Say ‘I’m Sorry’

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“I’m sorry to tell you that Sara has a permanent hearing loss.” One of the less glamorous aspects of being an audiologist is telling a parent that his or her child has a hearing loss. Although this is difficult news to deliver, how you convey that information can potentially have as much of an impact as the hearing loss itself.

Instead of apologizing for delivering this news, another way to frame the conversation is to say, “I know this may come as a surprise to you, but…” Although semantically similar to the apologetic statement, qualitative and anecdotal research has shown that parents will remember verbatim how the news was delivered to them.  As Dr. Jeffrey Lewis, a professor of mental health counseling at Gallaudet University who also teaches counseling skills to audiology students, comments, “This kind of subliminal language, though not intentional, can have real consequences for how the family approaches this news and can set lower or even negative expectations for the abilities of the child”.

Another example of negative messaging is using the word “fail” with regard to newborn hearing screenings.  Not only does “fail” suggest a hearing loss that very well may not be present; it can also make parents defensive. As one parent commented, “How could my daughter fail a test that she didn’t know she was taking?” Many institutions, including Boston Children’s Hospital and Gallaudet University, have incorporated this language into their clinical practice.

Knowing your audience is also important. For example, some deaf parents may be excited and happy to learn that their child has a severe to profound hearing loss. As one deaf parent explained, “With my first child, my husband delivered the results of the newborn hearing screening. He came into my room saying, ‘Alright she did it! Our baby passed the test; she’s deaf!’  When this occurred with our second child however, we were both surprised to learn that he passed in the sense that he was hearing and not deaf like us.”

Other deaf parents may be disappointed or have mixed feelings about this news. Most deaf babies are born to hearing parents who are in complete shock when they learn of the results.  By framing the news in a neutral manner, you are putting yourself in a position to support the parent and answer any questions they may have.

Although we are certainly not denying the shock and grief that most parents experience when facing a diagnosis of hearing loss, the less negative we can make the message, the better. Suhana Alam, a deaf adult recently selected to speak on a panel of successful deaf college students at the Annual Early Hearing Detection & Intervention Meeting in April commented, “The provider…needs to make sure the parents understand that their child’s brain works just fine; he or she just has limited hearing capability.”

As audiologists, we can then work with the family in providing information on the full range of communication options available to them.

Regardless of whether we are seasoned audiologists with years of experience or new audiologists beginning our professional careers, we are constantly adapting to change in audiology and critical evaluation of our language and word choice are easy adjustments that we can make for our patients and family members.
Cynthia Frey wrote this article with Whitney Kidd. Both are graduate clinicians in the Deaf and Hard of Hearing Infants, Toddlers, and Families: Collaboration and Leadership Program at Gallaudet University.

Comments

  1. Well said! Audiologists must work with families all along the decision making process. Understanding families cultural (and linguistic) backgrounds and providing unbiased informational counseling is as important as providing appropriate adjustment counseling for families. Below are some additional ASHA resources on this topic.
    Guidelines for Audiologists Providing Informational and Adjustment Counseling to Families of Infants and Young Children With Hearing Loss Birth to 5 Years of Age
    http://www.asha.org/policy/GL2008-00289/

    JCIH 2007 Position Statement
    http://www.asha.org/policy/PS2007-00281/

    Supplement to the JCIH 2007 Position Statement: Principles and Guidelines for Early Intervention Following Confirmation That a Child Is Deaf or Hard of Hearing
    http://www.asha.org/policy/ps2013-00339/

    And look for a new Practice Portal clinical topic on “Permanent Childhood Hearing loss” at this link: http://www.asha.org/Practice-Portal/ This topic will be posted to the portal soon.

    • Janice Cagan-Teuber says:

      Children born Deaf do NOT have a “hearing loss”. They have lost NOTHING!!!! They are born Deaf. Stop telling parents their child was “born with a hearing loss”. They have NOT!!!!!

      • Allison says:

        How else would you recommend we say it? “Your child can’t hear, but fortunately for you, they never knew what it was like!” Absolutely not. If they expect their child to have hearing, but he/she doesn’t, it’s a loss to the parents. I’m sorry but Deaf Pride does not fly with most people.

      • Whitney says:

        Hi Janice,
        Being that Cindy and I have both been students living on campus at Gallaudet for multiple years, you are not the first person to bring this up. It is true that for children who may be D/deaf or hard of hearing, they maybe never had hearing to begin with, therefore they have not “lost” any hearing. I understand your point. However, for the purposes of this article, we are talking about children with any level of hearing loss; even a mild or moderate hearing loss can be devastating for parents who are not expecting it. It is never meant in a derogatory way, only as a way to identify a specific population of children with varying degrees of access to hearing.

  2. Jane gRABOWSKI says:

    Excellent point. The “I know this may come as a surprise to you, but…” alternative seems much more conducive to developing a strategy, instead of a “treatment” or “remedy”.

  3. Marla Hatrak says:

    it is really a very nice and positive blog…the kind that cheers me up…
    For me, the paragraph before the last raises a red flag for me.

    :…As audiologists, we can then work with the family in providing information on the full range of communication options available to them….”

    Actually, the audiologists should be discussing LANGUAGES…the difference between ASL & English (or the home language). Why ASL is easier and better to learn first. Once acquired, the Deaf child is pretty much set for a lifetime of academic success in ASL & English and if they are lucky to be placed — then in bilingual schools.
    And, of course, the family can then decide to add speech development as a communication tool.
    Communication is not equivalent to language. I think this is one of the misunderstandings that have been perpetuated over and over.
    Parents would comment, “…I just want to communicate with my child.” I get it. What the parents need to understand is that language is a pre-requisite to communication.
    Again, a nice and positive blog.

    • Whitney says:

      Marla,
      Thanks for your reply. We are definitely not implying that ASL is not a language by using the phrase “communication options”. ASL as an L-1 for babies who are Deaf or hard-of-hearing is a main component of our early intervention certificate program at Gallaudet. As I’m sure you’re aware, there is a lot of research showing that learning ASL as a first language gives children a literacy advantage when they begin reading over children without hearing access who have not learned any ASL. It would actually be something I would recommend if the parents were willing, regardless of whether the child eventually gets a CI or uses spoken English to communicate. Sorry for any confusion!

  4. Katherine Gilman says:

    Just a note that we, as Audiologists, are not qualified to say that the “child’s brain works just fine,” since no conclusions can be drawn regarding cognitive or learning abilities based on measures of auditory function. What if the child has co-morbid conditions or an as-yet undiagnosed syndrome, and the hearing evaluation is just the first step? It would probably be better to emphasize that since the child’s brain is still developing, interventions taken now will help the child learn their own ways of interacting with the world around them.

    • Whitney says:

      Hi Katherine, Thanks for your comment; you are totally right. I think her point in saying it (and why we included it) is the overall message that hearing loss itself is not “the end of the world”. She has gone on to be a very successful adult who happens to be deaf. But, yes, we definitely would never tell a parent there was nothing wrong with their child’s brain…definitely not within our scope for SLPs or Auds. Thanks for making the point!

  5. Whitney says:

    Thanks Pam! I’m glad you liked the article — thank you for providing these links!