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 Two
years ago, I asked 2,945 mothers who have children with Down syndrome
to participate in a research study that examined how doctors deliver a
diagnosis of Down syndrome. Your responses poured in, and your stories
were poignant and sensitively honest. I am happy to report that you now
have a voice in a national medical journal. The results of your opinions-and
your frustrations-have been published in the January issue of "Pediatrics."
This research study asked mothers to reflect on a central question:
How could medical support have been better when you received the
diagnosis of Down syndrome for your child? To answer this, mothers
completed an 11-page survey, which included a variety of topics:
How did your physician deliver the diagnosis? Were the verbal explanation
adequate, the setting appropriate, the language sensitive, and the
printed materials helpful? What was it like to receive the diagnosis?
Five parent support groups — the Massachusetts Down Syndrome
Congress (Massachusetts), the Mile High Down Syndrome Association
(Colorado), the Triangle Down Syndrome Network (North Carolina),
the Down Syndrome Association of Los Angeles (California), and the
Down Syndrome Society of Rhode Island (Rhode Island)
— distributed
copies of the research survey to all of the mothers on their mailing
lists. In total, 1,250 responses were received, making this the
most comprehensive and robust study on the topic, to date.
The majority of mothers reported being frightened or anxious after
learning of the diagnosis, and very few rated the overall experience
as a positive one. Among the words that were used were shocked,
angry, devastated, overwhelmed, depressed,
stunned, and helpless. The statistics revealed that
mothers were more apt to be fearful and anxious if their physicians
emphasized the negative aspects of Down syndrome when first delivering
the diagnosis. Physician behaviors did improve with time, although
very slowly. Definitively positive comments did not seem to be included
in mothers' responses until the late 1990s and 2000s. Mothers were
most optimistic when their physicians talked about the positive
aspects of Down syndrome and provided them with up-to-date printed
materials.
Through their collective responses, mothers have called upon physicians
to adopt 10 recommendations when delivering a postnatal diagnosis
of Down syndrome:
(1)
The person to deliver the news should be a physician. Mothers
in this study received the diagnosis from a variety of health care
providers: pediatricians, neonatologists, obstetricians, genetic
counselors, nurses, and in two cases, the lactation specialist and
the candy-striper volunteer. Mothers felt that a physician was the
person most knowledgeable to present the diagnosis.
(2) Obstetricians need to coordinate their messages with neonatologists
and pediatricians. In many hospitals, mothers suggested that
there was confusion and, at times, disagreement over which physician
was responsible for delivering the news. Physicians from various
specialties need to work collaboratively.
(3) The news should be delivered once the mother is settled and as
soon as a physician suspects the diagnosis. Some mothers
were upset that they received the news immediately, particularly
while episiotomies were still being sutured. Most mothers, however,
were worried during what was described as a silence period, where
no health care professional would give them an honest answer
about what was going on. A physician should not wait until a
diagnosis is confirmed through karyotyping; mothers prefer to
be aware of the physicians' thought process, no matter how difficult
the news might be.
(4) Whenever possible, the physician should make the announcement
with both parents present, in a private setting. As the diagnosis
of Down syndrome is just as novel to the father as it is to the
mothers, physicians should not expect that fathers should be
the ones to share the news with the mothers.
(5) When delivering the news about Down syndrome, the physician should
first congratulate the parents on the birth of their child.
Mothers have recommended that physicians include the positive
aspects of Down syndrome in their first descriptions of the condition.
Many mothers mentioned that the best words used by their physician
during this initial explanation were, "Love your child like any
other child."
(6)
Health care professionals should keep their personal opinions
to themselves. Mothers have asked physicians to offer sound
medical advice based on up-to-date information, but not personal
opinion.
(7)
Mothers should be provided with up-to-date printed materials.
Most new parents were frustrated at either receiving outdated information
or no information at all. Mothers requested receiving complimentary
copies of books on Down syndrome that included positive imagery;
or, in the cases where hospitals were financially unable to do so,
a bibliography listing the most current resources for new parents.
(8)
Parents should be provided access to other families who have
children with Down syndrome. First call programs
— that is, support programs in which a parent of a child with
Down syndrome visits or phones one of the new mothers
— were mentioned as invaluable sources of help to the new
parents. Hospitals and parent support groups should work collaboratively
to provide this requested outreach to new parents.
(9)
After the initial diagnosis or suspicion is shared with parents,
they should be offered a private hospital room. As mothers respond
to the diagnosis with a variety of emotions, many requested that
they have a private space to express those emotions.
(10)
Physicians should be cognizant of the realities and possibilities
of growing up with Down syndrome. Simply put, Down syndrome
is not just what was taught in medical school. Mothers considered
it the responsibility of doctors to stay informed about the educational
and social potentials of children with Down syndrome.
The
time for change is long overdue. These recommendations offered
by mothers are by no means revolutionary and could be easily
implemented by all physicians responsible for delivering diagnoses
of Down syndrome. You can continue to effect change by sharing
the full study with the hospitals in your surrounding area. (The
complete report is available online at www.mhdsa.org.)
Also
of note: Many of the mothers who responded to the survey received
the diagnosis of Down syndrome through prenatal testing. These results
were analyzed separately and will be published in an upcoming issue
of the medical journal, American Journal of Obstetrics and Gynecology.
I will be sure to submit to you another report when I am able to
release these results.
Financial
support for this research was provided by the Tim White Fund from
Children's Hospital Boston and a part-time research grant from Harvard
Medical School.
Brian
Skotko is a joint-degree student at Harvard Medical School
and Harvard John F. Kennedy School of Government. He has a 23-year-old
sister with Down syndrome and has co-authored the book, Common
Threads: Celebrating Life with Down Syndrome. He can be contacted
at Brian_Skotko@student.hms.harvard.edu.
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