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Physicians may also find it challenging to identify children at
risk for developmental delays and disorders and difficult to
express their concerns about a child's development with parents
or caregivers. No doubt about it, these are critical
life-changing discussions that require time, sensitivity,
honesty, planning, and follow-through on your part. Here are
some suggestions as to how you can handle this process
successfully with your patients.
Listen to parents
In recent years, parents of young children have
become increasingly aware of the need to monitor traditional
developmental milestones at each well visit prior to age three, due
in large part to the popularity of the What to Expectseries,
the Touchpointsbooks, and other baby books currently
available. Parents expect to have a dialogue with their child’s
physician about development, though even these highly regarded books
do not cover social, emotional, and communication milestones well
enough. Nor do they address behavioral problems.
A recent national survey of parents with young
children indicated that they want more information and support on
childrearing and developmental concerns, yet pediatric clinicians
often fail to discuss non-medical concerns with them (Taaffe Young,
Davis, Schoen & Parker, 1998). Moreover, detection rates in primary
care show that 70% of developmental disorders (Palfrey, Singer,
Walker & Butler, 1994) and 80% of mental health problems are not
caught (Lavigne et al, 1994). These discussions could yield
developmental concerns early, since parent report has been shown to
be highly accurate and indicative of a true concern (Glascoe, 999).
Because parents are with their children around
the clock, they are well positioned to be valid reporters about
their child’s development. This, combined with routine observations
and comparisons of other children is very powerful. This cuts across
all populations: income, education, social level, culture, etc. A
physician can make great use of these observations at a well child
visit where the average time for a professional to observe a child
is only 15 minutes on average. Thus, a collaborative
parent/physician relationship is critical to the continued healthy
development of a young child.
When you have concerns about a child,
remember, this is a family you anticipate having a professional
relationship with for the next 18 years. It's important to
develop the ability to say, 'Okay, this is a problem you're
experiencing, I'm going to take it seriously. I may not agree
with you that it's developmental; I may think this is more of an
emotional or family problem, but you're telling me it's a
problem, and I'm going to do something about it."(the late Robert H. Wharton, M.D., Developmental and Behavioral
Pediatrician)
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Understand that early identification and intervention are essential
Early
intervention’s positive outcome has been well-documented in the
literature and goes far beyond IQ. In the short term, it improves
the quality of life and functioning for the child and for the
family. In the long term, early intervention’s impact extends into
such key developmental areas as prevention of secondary
emotional/behavioral issues, reduction in teen pregnancy, increase
in high school graduates, increase in employment, and reduction in
the crime rate. (Glascoe, 2002).
Pediatric clinicians are in a unique and central position to
identify developmental concerns early and refer children at risk on
for further evaluation and treatment. Parents depend on pediatric
clinicians for advice, guidance, and support. They need healthcare
professionals who can speak the language of development with them
and work with them to keep their child on a healthy developmental
path.
"I would advocate a preliminary
developmental screening for all children. And if a parent comes
in and has concern about a child, there should be an immediate
discussion about it. If the pediatrician doesn't have time, it
would be well for him to either have a person to whom he refers
the family or for one of his staff to be able to sit down with
the family for 15 minutes and make them feel heard. The risks of
not doing that are enormous in that the first few years of life
are the period of the greatest neuroplasticity and the greatest
rate of change in brain development. This is a critical period.
If we miss this critical period, we could miss the boat on
helping a child to develop to his or her fullest potential(Rebecca Landa, Ph.D., Professor of Psychiatry)
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Consider the prevalence of developmental delays and disabilities
Prevalence studies indicate that autism spectrum
disorders are dramatically on the rise with the CDC citing 1 in
every 150 children on the autism spectrum and developmental
disorders representing 17% of young children (CDC: Yeargin-Allsopp, Rice, 2007).
Thus, every pediatric professional can
expect to see at least one patient in his/her practice (if not more)
that lives with these concerns. This makes it essential for medical
practitioners and clinicians to understand the
key social,
emotional, and communication milestones and to have a firm grasp
of red flags.
"The findings now from very large
prevalence studies show that 16 to 18% of children have
developmental problems. That's one in every five patients or so,
especially if you include the more serious mental health
problems. One out of every five patients that you run into will
be experiencing a developmental problem...it's a huge concern.
It's probably the biggest single issue that you encounter in
pediatrics and, yet, it is just a fraction of pediatric
training."(Frances Page Glascoe, Ph.D., Professor of
Pediatrics)
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Heighten your “index of suspicion”
Simply
by making developmental surveillance a regular part of every office
visit, you can sharpen your observations, elicit better information
from parents, and heighten your index of suspicion. (American
Academy of Pediatrics, 2001).
Suspicions are eliminated or confirmed through the screening process
first by using a broad-based developmental tool and then, if
concerns persist, by narrowing the focus through a level-two tool
(e.g., autism or Asperger screen). Pediatric physicians’
observations enhance and strengthen the accuracy of screening tool
measures. Physicians can use the developmental surveillance and
screening processes to increase the chance of detection during very
early development and provide a clear compass for referral and
treatment if a concern is flagged. By listening closely to parent
report during the surveillance process, physicians may be prompted
to start the developmental screening process at any time a concern
arises as a result.
"Physicians need to have an index of
suspicion. And they need to listen to parents. Even when I was a
resident back in the dark ages...there was this whole idea about
being an overanxious mother. I don't think I've ever seen a
mother that I thought was overanxious. You're usually anxious
for a reason and if there is a reason, you need to know what
that reason is. So if they've got a busy schedule, it would be
appropriate when Mrs. Jones comes in to say, 'Mrs. Jones, I
really don't have time today, but let's make an appointment,
I'll stay late on Thursday, why don't you drop by and let me
hear more about that problem.' The parent needs to be validated,
and you, the physician, need to hear the story in more detail.
Without that, I don't think you have a clue, frankly."(Margaret L. Bauman, M.D., Pediatric Neurologist)
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Make each well-visit an opportunity for
screening and surveillance
In response to the increasing number of young
children affected by these disorders, leading medical organizations
(American Academy of Neurology, 2000; American Academy of
Pediatrics, 2001) have issued policy statements that provide
specific guidelines toward the routine screening and surveillance of
developmental delays and disorders, including autism. By making
routine screening a regular part of pediatric practice, physicians
can channel parent concerns efficiently, reduce over or under
referrals, and accurately validate reported concerns and
observations.
"Ask the parent how little Johnny or
Susie lets them know what they want and listen carefully for the
explanation. If at 12 or 14 months little Johnny or Susie simply
cries or wants the parent to guess what he or she wants, but
can't use purposeful signaling, such as taking them by the hand
or pointing to indicate wants or desires, that's a warning sign.
Also, observe yourself. Try to observe a few minutes of free
play. You don't have to make a diagnosis, you just want to be
alert."(Stanley I. Greenspan, M.D., Child Psychiatrist)
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Create a screening training and implementation plan
To make screening and referral a routine part of
pediatric practice, it will require planning, training, and
implementation. First, if you have someone on staff who is already a
champion for children with special needs, get that professional
involved in creating an atmosphere of enthusiasm and excitement as
an advocate of positive change. Train all staff members, including
front office staff. Not getting all suitable staff on board can make
or break a program. Host a meeting with local service providers and
office staff to build relationships and establish collaborations.
Plan and implement a smooth office process for storing,
disseminating, tabulating, and replenishing screening questionnaires
and referral notes. Arrange to have trained staff available who can
interview or interpret questionnaires for those parents who cannot
fill out the forms without support. Stock exam rooms and the front
office with patient education materials related to these disorders
for easy access. Keep contact information on hand for quick
referrals to local service providers and diagnostic services.
Lastly, look at how other model pediatric
programs are meeting this challenge. One excellent example is the
Health Steps
program, an approach that designates a trained staff
member to be a developmental “Healthy Steps” specialist who
regularly addresses issues around child development and behavior. To
be sure, innovation can lead to a successful implementation of a
screening and referral program. But plain old-fashioned planning
and execution can be all that is necessary to get started.
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Deliver difficult news to parents with sensitivity and understanding
We have
provided links to many excellent journal articles that discuss how
to deliver difficult news to parents in our
Reference section below. In addition to these sources, we have
provided our own advice for how to approach the difficult
conversation of delivering bad news. It is important to remember
that positive outcomes of these discussions between a physician and
parent will set the tone for how the parent views their child in the
future, how satisfied they are with the physician/patient
relationship and how positively they view their roles as parents in
the years to come.
1. Set
the stage for a successful conversation.
Often,
these difficult conversations take place in the physician’s office
immediately following a screening. However, if your schedule does
not allow adequate time to hold this conversation, schedule a
follow-up visit as quickly as you can. Choosing the right time and
place for a conversation to share your concerns is very important.
And allowing sufficient time with no interruptions is critical.
Understand that emotions may be unpredictable. Be ready to listen
and offer help through the referral process.
2.
Start with parent observations, questions, or concerns.
It’s
important to assess where a parent stands in relation to
understanding his/her child’s development before sharing your own
professional concerns. The parent may already sense a problem and
just not have the words to articulate it. Gently probe and ask
questions that will allow a parent to share their own observations,
questions, or concerns first. Then share your own observations and
screening results in a very neutral manner. By doing so, you will
open an exchange and may even validate a parent’s hidden concerns
and fears.
3. Put
yourself in the parent's shoes. Be supportive.
Some of
the most memorable conversations that parents of children with
special needs report are those that take place at the critical
moment a first concern is expressed. An empathetic approach goes
much further in establishing trust and understanding than a clinical
or professionally-detached one. Your tone and manner should be open
and available. Whatever the outcome, in the long run, the parent
will remember and appreciate your discussion if it is framed in a
caring way.
4.
Focus on the need to "rule out" anything serious.
By referring for further evaluation, it opens up
the opportunity to “rule out” as well as “rule in” the concern. If
concerns are ruled out, parents can rest easy. If concerns are
confirmed, then seeking help through
evaluation and referral will help to get the child back on a healthy
developmental path. No harm can be done by checking out
concerns. Things can only get better.
5.
Refer parents and caregivers to other resources. Some parents need
to come to this understanding on their own.
It is
also a good idea to give the parent something descriptive to read
about the disorder in the quiet of their homes. Seeing disabilities
described in writing, whether through literature or on the Web,
allows a parent to make the match with his/her own child’s behaviors
and needs. It provides an objective description of common features
and allows the parent to come into recognizing developmental
concerns at their own pace. Often, when a parent is in denial,
reading something that describes their own child’s behaviors closely
can be the catalyst for progress.
6.
Emphasize the importance of early identification and intervention.
One way to look at developmental concerns is
that if a child had signs of a serious and persistent physical
illness, like asthma, you would want to get it checked out as soon
as possible to rule it out. If there really were a problem, it would
only make it worse by not doing so. Developmental delays are no
different. By not receiving timely interventions for concerns around
language, behavior, and social connectedness, the problems will not
go away, but will worsen over time. And what’s most hopeful is that
early intervention works, improving life in the long and short term
for both the child and the family. So life will get better once
interventions are underway.
7. Be
confident that sharing your concerns is always the right thing to
do. The hardest part is finding the right words to get started.
Try
role playing what you will say first. Express what you have observed
that gives you concern in a caring and supportive way. By doing so,
it may lower your own anxiety and give you the confidence to have a
heart-to-heart with a positive outcome. Do not be afraid about
hurting the relationship with the family. If you present your
concerns in a positive and caring way, you will build trust. The
bottom line is that the earlier a developmental concern is
identified and treated, the better the outcome.
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Narrow
the gap between knowledge and behavior
There
is much currently being published in medical literature about the
gap between knowledge and behavior in practice. Physicians are more
knowledgeable than ever about autism due to increase in awareness
campaigns, media attention, and funding for research studies. So why
is there still a gap between knowledge and practice? And why don’t
many physicians screen?
Physicians cite many challenges that may influence their decisions
on whether or not to screen routinely in practice. Among these are:
-
Lack of training
- Lack of time
- Lack of reimbursement by insurance companies
- Physician perceptions about fears and benefits of screening
- Breaking bad news to families
-
Concerns about over referrals
- Lack of confidence in results of early intervention
However, in spite of the perceived challenges of screening, two
conditions have been shown to influence a physician’s willingness to
act when a developmental concern is indicated: a sense of urgency and a level of certainty (Kennedy, Regehr, Rosenfield,
Roberts & Lingard, 2004).
If one considers the latest information about
early brain plasticity and the very powerful influence of early
intervention on the developing brain, a sense of urgency is an
absolute must whenever a parent expresses a developmental concern.
The use of validated screening tools in practice strengthens a
clinician’s level of certainty by providing a measure of confidence
to make the referral for further evaluation.
The First
Signs program is hoping to alleviate these perceived challenges
by offering training programs in participating states and
information on this Web site, such as recommendations for organizing
a pediatric office to implement successful screening, advice on
delivering bad news to families, information about current screening
tools available and evidence of the efficacy of Early Intervention.
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Follow up with referrals;
Progress can be made
It is
important to have on file contact information for local agencies,
services, and specialists where families can go to for help during
the referral process. Oftentimes, physicians may not know of local
resources that are available or may not be satisfied with the
caliber of these services. Take the time to find out for the future
of your patients. Once you have made the appropriate referrals, be
sure to follow up with families to see how they are doing. Progress
will be made with the proper supports and services in place. The
process starts with you.
"One of the greatest joys out of all this is the day that the child
shows up— you've delivered the bad news six months ago and the
family's done what you've told them to do—they come back in and
you've got a child who's looking at you. Now he's developing words
and play skills are beginning to expand. The parent looks terrific
and the kid looks terrific and you're saying, 'wow, this is
terrific, this is really great stuff'.">
(Margaret L. Bauman, M.D., Pediatric Neurologist)
References
American Academy of Neurology
and Child Neurology Society. (2000). Practice parameter: Screening
and diagnosis of autism, Neurology, 55, 468-479.|
link (PDF)
American Academy of Pediatrics.
(2001). Committee on Children with Disabilities. Policy Statement:
Developmental Surveillance and Screening of Infants and Young
Children, Pediatrics, 108, 192-196.
|
link
American Academy of Pediatrics. (2002). Committee on Children with
Disabilities. Policy Statement: The Pediatrician’s Role in the
Diagnosis and Management of Autistic Spectrum Disorders in Children,
Pediatrics, 107, 1221-1226.
|
link (PDF)
Bailey, D.B., Hebbeler, K., Scarborough, A., Spiker, D. and Mallik,
S., (2004). First experiences with Early Intervention: A national
perspective. Pediatrics, 113, 887-896.|
link (PDF)
Bailey, D.B., and Scarborough, A., (2003). Families’ first
experiences with Early Intervention: Executive summary. National
Early Intervention Longitudinal Study. |
link (PDF)
Boyle CA, Decoufle P, and Yeargin-Allsopp M., (1994). Prevalence and health impact of developmental disabilities in US children.
Pediatrics. 9, 399-403. |
link
For: Developmental Disabilities Branch, Centers for Disease Control and Prevention, Atlanta, GA
Dobos, A.J.,
Dworkin, P., Berstein, B., (1994). Pediatrician’s approaches to
developmental problems: has the gap been narrowed? Journal of
Developmental and Behavioral Pediatrics, 114, 210-216.|
Gabovitch, E.,
Wiseman, N. (2005). Early Identification in Autism Spectrum
Disorders: Identification, Education and Treatment, (3rd
ed.), D. Zager, ed., 145-172. (in press, 2005). Garwick, A.W.,
Patterson, J., Bennett, F.C., Blum, R.W., (1995). How families first
learn about their child’s chronic condition. Archives of
Pediatric and Adolescent Medicine, 149, 991-997.
Glascoe, F.P.,
(2002). Delivering difficult news. AAP Developmental and
Behavioral News, 11, 3-5.
|link
Glascoe F.P. (2001). Are over-referrals on developmental screening
tests really a problem? Archives of Pediatrics and Adolescent
Medicine, 155, 54-59.
Glascoe, F. P. (1999). Using parent’s concerns to detect and
address developmental and behavioral problems. Journal of the
Society of Pediatric Nurses, 4,24-35.
Glascoe,
F. P. (1998). Collaborating with parents: Using parents'
evaluation of developmental status to detect and address
developmental and behavioral problems. Nashville, TN:
Ellsworth & Vandermeer.
Glascoe F.P. (2001). Are
over-referrals on developmental screening tests really a problem? Archives of Pediatrics and Adolescent Medicine, 155, 54-59.
Greenberg, L.W., Ochsenschlager, D., O'Donnell R., Mastruserio, J., and Cohen, G.J., (1999). Communicating bad news: A pediatric department's evaluation of a simulated intervention.Pediatrics, 103,
1210-1217. |
link
Kennedy, T., Regehr, G., Rosenfield, J., Roberts, S.W., and Lingard,
L., (2004). Exploring the gap between knowledge and behavior: A
qualitative study of clinician action following an educational
intervention. Academic Medicine, 79, 386-393.
|
link
Krahn, G.L., Hallum, A., and Kime, C., (1993). Are there good ways
to give ‘bad news’? Pediatrics, 91,578-582.
Lavigne, J.V., Binns, J.H., Christoffel, K.K., Rosenbaum, D., Arend,
R., Smith, K., Hayford , JR., McGuire, P.A. and the Pediatric
Practice Research Group. (1993). Behavioral and Emotional Problems
Among Preschool Children in Pediatric Primary Care: Prevalence and
Pediatricians' Recognition. Pediatrics, 91, 649-655.
Moore V, Goodson S, (2003). How well does early diagnosis of autism
stand the test of time? Follow-up study of children assessed for
autism at age 2 and development of an early diagnostic service. Autism, 1: 47-63. |
link (PDF)
Mueller, P.S., (2002).
Breaking bad news to patients: The SPIKES approach can make this
difficult task easier. Postgraduate Medicine, 112, (retrieved
from Internet 10/1/04).
Palfrey J.S., Singer J.D., Walker D.K., Butler, J.A. (1994). Early
identification of children’s special needs: A study in five
metropolitan communities. Journal of Pediatrics, 111,
651-655.
Sturner, R.A. (1991). Parent questionnaires: basic office
equipment? Journal of Developmental and Behavioral Pediatrics, 12,51-54.
Taaffe Young, K., Davis, K.,
Schoen, C., Parker, S., (1998).
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Vandekieft, G.K., (2001). Breaking bad news. American Family Physician, 64,
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