How should a pediatrician tell you your child may have a disability?
That’s a big question. This is one that comes up a lot in the autism world. Many people say, “my doctor told me that my kid would never be able to talk, walk or take care of him/herself but he/she made big gains” Others complain that diagnosis of disability was missed, delayed or downplayed.
The AAP has issued guidelines on screening for autism, for example. But what is the correct balance of how to warn a parent that his/her child may have autism or another disability?
That is a question that is addressed in a recent paper, Sugar-coaters and Straight Talkers: Communicating About Developmental Delays in Primary Care.
Here’s the abstract.
OBJECTIVES: The goals were to investigate parents’ and early intervention (EI) specialists’ beliefs and experiences regarding discussing child development in primary care and to identify communication barriers and opportunities. METHODS: Focus groups were held with (1) mothers of young children with typical development, (2) mothers of young children who received EI services, and (3) EI specialists. Seven groups (N=46 participants) were conducted in the greater Cleveland, Ohio, area. Meetings were audio-recorded, transcribed, coded, and analyzed, to identify themes.
RESULTS: Most mothers reported a preference for a nonalarmist style of communication when developmental delays are suspected. In contrast, some mothers preferred amore direct style, including the use of labels to help them understand their child’s development. The importance of preparation to accept information about developmental delays emerged as a theme in all groups. Elements contributing to preparedness included information about expected developmental skills, suggestions for promoting skills, and a specific time frame for follow-up evaluation. Mothers of children with disabilities perceived that early reassurance of normalcy by providers in response to their concerns led to self-doubt and increased difficulty accepting the diagnosis.
CONCLUSIONS: Mothers and EI specialists have clear ideas about factors that promote or impede communication regarding child development. This information can inform primary care providers’ approaches to monitoring and screening the development of young children and to communicating with parents regarding suspected developmental delays. Pediatrics 2009;124:e705–e713
The researchers worked with focus groups of parents of children who were in early intervention, parents of children who were not in early intervention and early intervention professionals.
Separate focus groups were held with 3 types of participants, that is, (1) mothers of children who were receiving/had received EI services (EI parents), (2) mothers of children
<5 years of age who had not received EI services (non–EI parents), and (3) EI specialists.
The groups were small (the total number of participants in all groups was 46).
The study found that most parents don’t express concerns directly. Rather than say, “Is my child delayed?” a parent is more apt to say, “Should my child be talking by now?”.
It is important that providers recognize that parental expressions of concern may be stated subtly, indirectly, or briefly. A related theme that emerged was the perception of not being heard. Previous studies indicated that providers’ failure to acknowledge or to address patient concerns is unfortunately widespread.
That isn’t going to be a shocker to any parent reading this—some parents feel like their pediatricians aren’t listening.
But, how should a doctor approach the issue of possible developmental delays? Unfortunately, there isn’t a clear answer. Some parents say go slow and gentle, others say be direct.
Parental preferences for direct (straight talk) versus indirect (sugarcoating) communication approaches seemed to be related to preparation to hear about suspected delays. Some
parents needed weeks to months to prepare to hear such news, beyond the brief “warning shot/forecasting” recommended for medical encounters
The sugar-coater parents recommended:
Nonalarmist wording by providers, maintaining optimism and acknowledging that the child’s development might not be delayed, was recommended. Parents also recommended providing information regarding what to observe, possible next steps for further evaluation, and a plan to check in with the provider within a short time
I am not a sugar-coater. But, I like the idea of giving information of what to observe. I don’t really see the value in just saying, “Let’s wait and see”. Let’s wait and see what, exactly? Give parents some homework, things to watch for.
The “straight talkers” recommended a more direct approach:
Other parents cautioned against sugarcoating and favored a direct approach, emphasizing the importance of straight talk. By inquiring systematically about parents’ developmental concerns, providers can obtain information regarding parents’ readiness to hear about suspected developmental delays and can tailor communication to the level of preparation.
I’d probably go even beyond the “straight talkers”. I’d say it’s better to hear the possible situation as soon as the doctor has suspicions rather than to wait for the parent to be prepared.
What’s the value to “let’s wait and see”? Is there any downside to early intervention besides the logistics of getting a kid here and there for therapies and the worry about possible delays? I don’t think so. OK, there is the financial cost to an already overloaded system. But in general, what’s wrong with saying, “Well, junior is now 3 and the speech and occupational therapy is no longer needed”? Compare that to, “Well, Junior is about to turn 3 and, yep, we should have gotten him started in early intervention last year”.
In other words, since doctors are going to make mistakes in their suspicions they should err on the side of possibly “alarming” a parent.
One problem doctors face is that parents are not always going to give the doctors accurate information:
Negative communication experiences included parents’ feeling blamed by providers for the child’s developmental delay. In 1 group, mothers reported that they might respond in the affirmative to questions regarding developmental milestones even when their child was not yet demonstrating a skill, out of concern that lack of attainment would be seen as evidence of neglect.
Doctors are definitely faced with a dilemma. There is no one approach that will fit what all parents want. Some don’t want to be alarmed. Some want to know all suspicions right away. Some are not going to express their fears or questions. Doctors are going to make “mistakes”.
Again, I am more in favor of a “straight talker” as my kid’s pediatrician. Yes, I am a consumer when I go to the doctor. But what I am paying for is to be told what I need to hear, not what I want to hear. It isn’t whether I am prepared to hear that my child may be delayed, but whether my child may need to start therapy. I can get over the shock. Even if I can’t, my kid counts more.
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How should a pediatrician tell you your child may have a disability?
That’s a big question. This is one that comes up a lot in the autism world. Many people say, “my doctor told me that my kid would never be able to talk, walk or take care of him/herself but he/she made big gains” Others complain that diagnosis of disability was missed, delayed or downplayed.
The AAP has issued guidelines on screening for autism, for example. But what is the correct balance of how to warn a parent that his/her child may have autism or another disability?
That is a question that is addressed in a recent paper, Sugar-coaters and Straight Talkers: Communicating About Developmental Delays in Primary Care.
Here’s the abstract.
The researchers worked with focus groups of parents of children who were in early intervention, parents of children who were not in early intervention and early intervention professionals.
The groups were small (the total number of participants in all groups was 46).
The study found that most parents don’t express concerns directly. Rather than say, “Is my child delayed?” a parent is more apt to say, “Should my child be talking by now?”.
That isn’t going to be a shocker to any parent reading this—some parents feel like their pediatricians aren’t listening.
But, how should a doctor approach the issue of possible developmental delays? Unfortunately, there isn’t a clear answer. Some parents say go slow and gentle, others say be direct.
The sugar-coater parents recommended:
I am not a sugar-coater. But, I like the idea of giving information of what to observe. I don’t really see the value in just saying, “Let’s wait and see”. Let’s wait and see what, exactly? Give parents some homework, things to watch for.
The “straight talkers” recommended a more direct approach:
I’d probably go even beyond the “straight talkers”. I’d say it’s better to hear the possible situation as soon as the doctor has suspicions rather than to wait for the parent to be prepared.
What’s the value to “let’s wait and see”? Is there any downside to early intervention besides the logistics of getting a kid here and there for therapies and the worry about possible delays? I don’t think so. OK, there is the financial cost to an already overloaded system. But in general, what’s wrong with saying, “Well, junior is now 3 and the speech and occupational therapy is no longer needed”? Compare that to, “Well, Junior is about to turn 3 and, yep, we should have gotten him started in early intervention last year”.
In other words, since doctors are going to make mistakes in their suspicions they should err on the side of possibly “alarming” a parent.
One problem doctors face is that parents are not always going to give the doctors accurate information:
Doctors are definitely faced with a dilemma. There is no one approach that will fit what all parents want. Some don’t want to be alarmed. Some want to know all suspicions right away. Some are not going to express their fears or questions. Doctors are going to make “mistakes”.
Again, I am more in favor of a “straight talker” as my kid’s pediatrician. Yes, I am a consumer when I go to the doctor. But what I am paying for is to be told what I need to hear, not what I want to hear. It isn’t whether I am prepared to hear that my child may be delayed, but whether my child may need to start therapy. I can get over the shock. Even if I can’t, my kid counts more.