Sugar-coaters and Straight Talkers: Communicating About Developmental Delays in Primary Care

17 Sep

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.

10 Responses to “Sugar-coaters and Straight Talkers: Communicating About Developmental Delays in Primary Care”

  1. Stephanie September 17, 2009 at 11:34 #

    I would be inclined to the straight-talk approach than the sugar-coating, but I would also advise against unlabeled prognoses. For example, when my first son was diagnosed with autism the doctor said many things like “He will never talk. He will never practice pretend play.” He described a litany of things my son would never do, and aside from living independently as an adult (he’s ten) he’s done all of them.

    A diagnosis has implications of what may happen, but the prognosis is distinct from the diagnosis and the important thing to me is the doctor be clear about the difference.

    As for the “wait and see” approach, there’s often more than enough waiting during the diagnosis process and more waiting for services to begin once the diagnosis has been procured. With all the emphasis on early intervention being a key factor in skills-building, the “wait and see” approach seems out-dated and counter-productive to me. A better solution for the over-burdened system would be to create literature or other forms of training for parents to use to help children with mild delays on their own and keep the more expensive services to consultation visits. If that doesn’t work, then provide them with trained service providers. I would say it’s better to know and to be able to do something instead of waiting for potential problems to become more severe. A booklet and training video would be cheap enough to produce and distribute and could potentially save whichever government uses it from the need to provide more costly services later.

  2. jypsy September 17, 2009 at 11:40 #

    Parents are all so different….I just read a comment from a woman who said “We just received the dreaded “A” bomb today from the developmental pediatrican.” I don’t know what the Dr. told her but that’s what she’s telling people…

  3. farmwifetwo September 17, 2009 at 12:46 #

    I prefer the straight talk version and the straight labelling. Eldest was given mild-PDD first at 2.5yrs and we were given the “your kid will amount to nothing” sheets to read (my description for them) and told “go talk to the IBI (ABA) people”. Who’s program he didn’t qualify for anyways b/c they only take the severe kids.

    That was the problem, no follow up on what to do next. Luckily having been to the audiologist first we were involved in the Prov Pd speech and language program. And truly by fluke and forth hand listening to someone at a “do” I started making calls and totally fluked and found Community Living and my FSW.

    The other problem with the wait and see’s and sugar coated dx’s is when we went back at 3 and he had a few words they changed it to “speech and language delayed with global delays”. The school LOVED this one. “It’s just a learning disability we don’t have to do anything until Gr 3”.

    Call it what it is. Call it what will get you supports in school. Use it to get the services you need.

    I was offered a re-dx last fall to mild NLD…. thanks but “A mild form of ASD” is the same and with ASD in the dx we keep the services. Without “it’s just a learning disability” bye bye OT and EA/TA.

    In the “epic” I wrote to the Fed’s (all parties) and have sent to all of our team members I have written the “what to do next”. I’ve had requests from all (team members not gov’t) – since I wrote on it they couldn’t copy it – to use the “what to do next” section to give to others in their practices. The answer of course was “Yes”.

  4. Leila September 17, 2009 at 15:28 #

    My son’s pediatrician (Primary Care) didn’t want to alarm me but he tried to refer my son to a thorough evaluation by a specialist early on (2 years old), but his request was denied by the Medical Group and Insurance, because there wasn’t enough evidence of autism. He was seen by a speech pathologist within the medical group at 2 1/2 and she thought his speech delay was nothing to worry about. Finally my husband and I stumbled upon some information about “red flags” online and a lot of them were symptoms my son had. Then we wrote a report with all those autism symptoms comparing them to my son’s behaviors, and armed with that the pediatrician was finally able to put the referral through. He was diagnosed with ASD at 34 months old. Services started 3 months later because I worked really hard to accelerate the process.

  5. Chris September 17, 2009 at 16:39 #

    I would just like add that there is straight talking and then there is straight talking. Some people seem to use ‘talking straight’ as an excuse for being blunt to the point of rudeness, whereas it is possible to convey information clearly but with regard for the feelings of those hearing it.

  6. chaoticidealism September 17, 2009 at 16:49 #

    You really can’t make that many predictions when a child is very young. Telling a parent what a three year old will be capable of as an adult, or even as a five-year-old, is little more than guesswork and can be very harmful!

    Predicting future skills from pre-school delays is silly. But acknowledging said preschool delays, along with the possibility of staying delayed despite increasing skills, or of catching up or passing typical peers, is extremely important. Early delays aren’t set in stone, it’s important to make parents aware of the fact that this is simply not so…

  7. JoyMama September 17, 2009 at 20:49 #

    One thing that interested me is that looked to me as if the recommendations for straight-talk came from the “been there/done that” group (the EI parents). It seems to me that this group has the more informed perspective on what one REALLY ends up wanting when the rubber hits the road. The non-EI parents are just conjecturing, trying to imagine themselves into a situation that hasn’t happened. Living through it is often different than what we might imagine beforehand…

    I only lately became aware of how very recent the AAP recommendation is for using validated screening tools for developmental delays at early-childhood pediatric well-checks. Our pediatrician’s office was doing this already in 2002 when I had my first child, and I just assumed this was what most clinics would do. It was SO valuable in helping to catch my second child’s delays, very early on. More pediatricians need to be doing this!

  8. Sullivan September 17, 2009 at 23:15 #

    One thing that interested me is that looked to me as if the recommendations for straight-talk came from the “been there/done that” group (the EI parents). It seems to me that this group has the more informed perspective on what one REALLY ends up wanting when the rubber hits the road.

    JoyMama–

    I totally agree.

  9. Monica September 19, 2009 at 13:44 #

    I think too many people get stuck on the label. There are a lot of parents who avoid seeing specialists because they don’t want a word attached to their child. I think that this “fear” actually hurts the kids.

    I think having the label is important, because it allows you to get what they need to be successful in school and in life. And isn’t that the most important thing here, giving our kids what they need as quickly as possible.

    There are ways to be direct and say, “I think your child needs to see x doctor” without going outside of your expertise and saying things like “your child won’t ever ______”.

    (Unless you have a ped who also happens to be psychic- but even then there are too many cases of children doing things they were told they wouldn’t be able to.)

  10. Mike Stanton September 19, 2009 at 19:12 #

    Diagnosis is a signpost not a label. It should set you off in the right direction to help your child. I think a lot of the despair among parents arises when the diagnoses is presented not as a signpost but as Journey’s End.

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