Thursday, March 22, 2012

How to Break the News to Parents About Their Child's Disability

Kasting Connections Perspective:

Although this article addresses the issue of talking to parents about an Apraxia diagnosis, the material is important to read for any professional that needs to break the news to parents about any diagnosis.

Giving the News

How to Talk to Parents About the Apraxia Diagnosisby Sharon Gretz, M.Ed.

Giving the News: How to Talk to Parents About the Apraxia Diagnosis

by Sharon Gretz, M.Ed.
The hardest requirement for many healthcare professionals that provide services to children is to deliver news to parents and caregivers that is perceived as "bad news." In this sense, speech-language pathology is no different than other health related professions. Caring individuals enter into helping professions and thus are usually sensitive to the feelings of the individuals whom they serve.

While there is no one answer to the question of how to tell a parent that his or her child has apraxia of speech, we can address the concern about upsetting the parent. The reality is that it is likely that the parent will experience a range of emotions, including disbelief, sadness, guilt and fear. Whether it is in your office or later when the information has had time to sink in, parents are likely to feel and express upset when confronted with the news that their child has a significant speech disorder. The parents will likely have concerns for the future and feel overwhelmed by what they dont know yet about their childs condition. You cannot prevent this! But, what happens next can mean a lot to how the parent responds.

What follows is a list of suggestions for helping families after the diagnosis:
  • Have good and valid reasons for diagnosing apraxia of speech in children. Remember, that little speech or receptive skills that are higher than expressive skills, alone, is not enough for an apraxia diagnosis. Be sure you have good reasons before you give a diagnosis to a parent. Explain what you saw in their child that led you to your diagnostic conclusion and how you are able to rule out other possible diagnoses.
  • Compassionate honesty. It is important to both express empathy with the parent and explain that apraxia is a complex and often difficult speech disorder. Do not minimize the news or the impact on the child and family.
  • Assure parents that they will play a strong role in helping their child. Explain that you will want them involved in their childs treatment, to the extent that they desire or can participate.
  • Do not offer absolutes in regards to prognosis. While there may be both positive and negative prognostic indicators known from the evaluation, it is not fair to the child nor the parent to make immediate predictions for the childs future performance (i.e., Dont say, "Your child is not likely to ever speak clearly"... or, conversely, "With therapy, your child will be fine within a years time.") Do share with the parent information about their childs speech and language skills. Explain the relative contribution of these skills or lack of skills to their childs present communication difficulties, while noting any positive indicators that will help the child in therapy. Be sure to share your observations on the childs abilities, not just their deficits.
  • Tape-record your meeting and send the audiotape home with the parent. Often parents feel overwhelmed and later will not recall the words you said to them. The tape recording will allow them to review exactly what was said and help them absorb the information.
  • If at all possible, consider calling the parent in several days. It is kind to tell parents that they can call you if they think of more questions, but often parents feel as if they are imposing on a busy professional.
  • Offer resources. For example, copy pages from the Apraxia-KIDS web site and place them in an envelope that the parent can take home with them to read they feel ready to learn more. Offer to introduce the parent to another parent of a child with apraxia. Even after treatment has begun, check in with parents frequently to see if they need information or resources.
  • It is ok to say, "I dont know." Most parents are quite grateful when clinicians acknowledge what they do not know and when possible, make efforts to find information or help.
Most parents will need time and your patience while they fully absorb the information that their child has apraxia of speech. Most will also go through the range of emotions mentioned earlier and also face having to explain it all to family and friends. While you cannot spare them from these understandable feelings, you can be a positive and productive force in helping parents move from emotions to productive action on behalf of their child.

(Sharon Gretz, M.Ed., is the Executive Director and founder of the Childhood Apraxia of Speech Association of North America (CASANA). She has her Master's Degree in Counselor Education and has worked for many years with families of children with disabilities. In 2001, she was awarded the National Distinguished Service Award for her work on behalf of children with apraxia from the National Council on Communicative Disorders at the Kennedy Center in Washington, DC. In 2008, Sharon received the Community Hero Award for her work with CASANA. She has studied and completed all coursework as a doctoral student in Communication Disorders and Sciences at the University of Pittsburgh)

© Apraxia-KIDSSM - a program of The Childhood Apraxia of Speech Association (CASANA). All rights reserved.
Date: 2/24/2005 12:00:00 AMDate Last Modified: 3/7/2012 7:39:18 AMDate Created: 2/24/2005 3:12:58 PM

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