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8/9/2019 What are some psychosocial implications of congenital craniofacial anomalies?
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What are some psychosocial impl i ca t ions of
congeni ta l
cran io fac ia l
anomalies?
What fac to rs con t r ibu te to
the
cur ren t
s i tua t ion? b r i e f
h i s t o r i c a l
compara t ive survey
of
per t inen t sc ience and noted
t h inkers .
I
j u s t wanna be normal Doctor, give me t ha t
old
fashioned
normali ty
- -Ac t re s s
ma
Thurman
as
Sissy Hankshaw pleading
to
Dr.
Dreyfus in the f i lm Even Cowgirls ge t t he
Blues
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Dedicat ion
To Dr. Robert
W Blakeley
Professor of
Speech
Pathology
Director Craniofacial Disorders Program
Oregon Health Sciences
University
Child
Development
Rehabi l i t a t ion enter
Thank you
Your e f fo r t
and
t reatment on
y
behal f have
given me the voice to
m ke
this
oral
presentat ion
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Tab le o f Con ten t s
Page In t roduc t i on
Page 2
i r t h
Page
Freud
Page
7
Hi s t o r y
Page 9 Teas ing
Page 2 Speech
Page 5 Bi
b l i ography
Fina l
Page Reasearch Out l ine
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In t roduc t ion
y
i n t e re s t in the sub jec t of the psychosocia l
impl ica t ions o f congen i ta l c ran io fac ia l anomalies i s
persona l .
I am a f f l i c t e d
with
a un i l a t e r a l c l e f t
l i p
and
pa la te .
I welcome the oppor tuni ty
to wr i t e and
speak
on
the
subjec t to
promote fu r the r
publ ic unders tanding.
The
process a l so provides me with g re a t e r
se l f -awareness .
This repor t wil l focus
on
persons with
congeni ta l
anomalies
as opposed to
acquired disf igurement . Acquired
cran io fac ia l
disf igurement r e s u l t s
from
acc iden t s f i r e s and
i l l ness .
The psychosocia l
impl ica t ions for
each group vary
and
I
wil l
note them
throughout
the
r epor t .
y presen ta t ion wi l l include photographs
of
persons
wi th
var ious examples of c ran io fac ia l
d iso rder s .
Unlike
other d i s a b i l i t i e s f a c i a l disf igurement i s to
a
la rge
extent
v i sua l
and
a
p ic tu re
r e a l l y
i s
worth
a
thousand
words.
I
wil l begin
t h i s
paper
with the
s to ry
of a
young
mother and
the b i r t h of
her son.
I ll a l so discuss
Freudian
impl ica t ions
h i s to r i c a l background the subject of t eas ing
and
speech
concerns .
In
America about
4
mil l ion bab ies are born each
year.
Between
the
7th
and
8th
week of ges ta t ion the nasomedial
process completes the fus ing o f t he phi l t rum of the l i p .
This
f a i l s
to
occur
in
about
of
every
700 l i ve b i r t h s
r e s u l t i n g
in about 5 700
new
c l e f t
cases
per year .
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Bir th ,
the
beginning
of mother -ch i ld re l a t ionsh ip
I would
l i ke
to begin t h i s pro jec t by
cons ider ing the
thoughts of a young mother ,
Rita Brzozowski,
and
her
reac t ion to the
b i r t h
of her
son,
Adam.
Ri t a ' s
s to ry
appeared in the May/June 1992 i s sue of AboutFace, a
cran io fac ia l support
group
news le t t e r .
Rita begins ,
For most people,
having t h e i r f i r s t ch i ld
i s
an ex c i t i n g
event .
There are the
usual
concerns
about
what
could
go
wrong, but a
normal, hea l thy baby i s expected. When our
f i r s t
ch i ld ,
Adam was born t h i s was
not
the
case . I t s t a r t e d with a d i sce rn ib le hush in
the
de l ive ry
room. Jus t
a
hare
l i p ,
r ep l ied my
obs t e t r i c i a n . Not able
to
see the
baby 's face, I t r i ed to r e c a l l anything I
knew
about
t h i s
condi t ion
When I
saw
him,
my hear t
sank.
This
was
not
the per fec t baby
I had envi s ioned -
the
one with
the
rosy
checks,
de l ica te l i p s
and
upturned nose.
This baby ' s face was
d is f igured
As I held
my
newborn
son,
a l l I could see was t h i s
de fec t I f e l t I was in a dream and held
someone e l s e ' s ch i ld .
Later
Rita
would say, My ego had su f fe red a major
blow. I did
not
fee l pr ide in showing my baby to o ther s .
Even a
t r i p
to
the
p e d i a t r i c i a n was a cha l l enge to my pr ide
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and
vani ty . In the
wai t ing
room
I
would keep Adam s
face
hidden over
my shoulder .
My in format ion
i n d i c a te s t h a t
R i t a ' s
exper ience i s
not
unusual .
Brant ley
and
C l i f for d (1979b)
found
t h a t
mothers
o f ch i l d ren with
c l e f t l i p and/or p a la t e
reported
s i g n i f i c a n t l y g rea t er
n e gat ive r e c o l l e c t i o n s o f the
postnata l
per iod than mothers o f normal c h i ld r e n . Other
rea c t i o n s have
been
more n e gat ive , inc lud ing abandonment
o f
the
ch i ld . This
i s
par t i cu l a r l y t r ue
in Russia Blakeley) , ~
~
t
·
{:r>
Korea and to a
l e s se r extent , China Li ) .
ll
of t h i s
informat ion po in t s to
an
important fac t : The in te rac t ion
between
mother
and c h i l d i s
a
c r i t i c a l f ac t or in determin ing d \
j » »
Nv
,LA
the psycho log ica l adjus tment o f t h e s e c h i ld r e n . ~ \ · ~
recent
s tudy
e n t i t l e d The Role o f
Maternal
Factors in
the Adaptat ion
o f
Children with Cra n i o f a c i a l
Dis f igurement
was completed a t Harvard
Medical
School and Chi ldren ' s
Hosp i ta l ,
Boston,
M
(Campis,
DeMaso,
Twente, 1993)
and
reported
in
The
C l e f t
P ala t e - Cr an io f ac ia l
Journal
(January
1995) .
This s tudy hypothes ized t h a t maternal
adjustment ,
percept ions ,
and s o c i a l
support
would b e t t e r p r e d ic t c h i l d
adapta t ion
to
c r an i o fac i a l dis f igurement than
medical
se ve r i ty .
Of the 77 ch i l d ren (ages 6-12) in the s tudy, 33
had c l e f t l i p
and/or p a l a te , the o ther 44 had a
more
s ev ere
deformity . The
s tudy found
tha t maternal adjus tment
and
maternal
percept ions
o f
the
mother -ch i ld r e l a t i on sh i p were
more potent pred ic tors of c h i l d r e n ' s emot ional adjus tment
than e i t h e r
medical s e v e r i t y
or maternal s o c i a l support .
This
s tudy a l s o
reported
t h a t the degree o f f a c i a l
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disf igurement
had
no
re l a t ionsh ip to ch i ld
o r
maternal
percept ions ,
but
t ha t
having a
comorbid
severe
medical
cond i t ion
was re l a t ed
to grea te r behavior problems in
chi ldren . This s tudy c i t e d nine pr io r
s tud ies
which
indica ted
t h a t
ch i ld ren with c ran io fac ia l dis f igurement
have
d i f f i c u l t i e s in
psychological
adjustment and
two
s tud ies to
the cont ra ry . The s tudy a l so c i t e d o ther c o n f l i c t i n g
information in almost every
ca tegory .
The major l i m i t a t i o n
of
t h i s
study was t ha t
the
eva lua t ion of ch i ld adjus tment
relied." on, p ~ ~ l e ~ t r ~ ~ ~ E t t _ Also, g e d o . n n ~ ~ ~ .upper r S ~ )i th
a ~
r - f ~ Vf J
yv
f 1 N ~ 1(1 01\ L VI
d
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infant i n t e rac t ion ; (3)
mothers
of CFA ch i ld ren with v i s i b l e
de fec t s
repor ted
l e s s favorab le soc ia l suppor t than mothers
of CFA ch i ld ren
without
v i s i b l e defec t s .
One
i n t e r e s t i ng
aspec t of t h i s survey was t h a t
the
po ten t ia l p red ic to r va r iab le s
used
were based on
observa t iona l
measures of
mother- infant
play and t each ing
i n t e rac t ions . These
measures
are in f requen t ly used in CFA
psychological
research
desp i te t h e i r widespread app l ica t ion
in o ther a reas
of
developmental psycholog y. Also, mothers
of CFA ch i ld ren
repor ted
higher l eve l s
of
emotional d i s t r e s s
and
grea te r mari ta l c onf l i c t than
con t ro l s , as
repor ted
on
s tandard ized ques t ionnaires . In
the
Child
Behavior
Checkl is t
CBCL)
por t ion of t h i s s tudy, g i r l s with CFA had
mean scores above the 85th p e rc e n t i l e fo r t h e i r normative
group, but
boys
with CFA had
mean
scores
very
near t h e i r
normative average . In
add i t ion
18 o f the CFA ch i ld ren had
CBCL
scores
above
the
95th
p e rc e n t i l e ,
ind ica t ing the
need
for c l i n i c - r e f e r r a l fo r psych ia t r i c
problems (compare with
non-CFA ch i ld ren
a t
cons iderab ly l e s s
than 5 ). The
researchers
suggested t ha t
the mo ther s
ch i ld -d i rec ted
or i en ta t ion dur ing play with he r
in fan t
o r todd le r may
pred ic t
maternal
behavior problem
r epor t s
up to 4 years
l a t e r ; higher
l eve l s
o f
ch i ld -d i rec ted
play s k i l l
were
assoc ia ted with lower
subsequent
CBCL
score s .
As we
have seen
from
the
foregoing informat ion, the re
are
ea r ly psychologica l
impl i ca t ions
fo r persons with
congeni ta l
c ran io fac ia l anomal ies . Juxtaposed with
acquired
disf igurement
in
l a t e r
l i f e , t he se impl i ca t ions a re
unique.
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Freudian
Cons idera t ions
From
a Freudian
psychosexual developmental perspect ive ,
c l e f t l i p and
pa la te of f e r s
some
i n t e r e s t i ng
cons idera t ions .
These cons ide ra t ions
involve
the f i r s t psychosexual
s tage ,
the Oral Stage.
According
to
the theory , from b i r t h
to
age one, the
mouth, tongue,
and gums
are the focus of plea surab le
sensa t ions in the
baby ' s body, and
feeding
i s
the
most
s t imula t ing ac t i v i t y .
(Berger , 1994)
Feeding an in fan t with
c l e f t
l i p
and
pa la te presen t s a
cha l l eng ing s e t of physical c i rcumstances . Children with a
c le f t
p a l a t e
cannot c rea te s u f f i c i e n t
nega t ive
pre ssure to
suck
milk, which
i s
expressed from the n ipple
between
t he
upper
and
lower gum pads, because
of
the absence
of
a
pa la ta l
sea l (Berkowitz, 1994).
One
mother
descr ibed each
feeding of her c l e f t pa la te in fan t as a
nightmare
(AboutFace
January /February 1993).
In add i t ion to feeding
problems,
surgery o f
the
l i p ,
pa la te and gums
of an i n fan t presen t s an
oppor tuni ty
for
pain and
t rauma. Presurgica l or thoped ic al ignment
procedures as wel l as pos t su rg ica l concerns are another
source of poss ib le
in t e r f e r en ce
with
ora l
s t age development.
In add i t ion
pos t su rg ica l feedings
are
sometimes espec ia l ly
d i f f i c u l t .
fee l t ha t the
above i s sues
place an a f f l i c t e d
in fan t
a t r i sk for poss ib le
o ra l
s t age f ixa t ion . This i s
not
a
concern with
c ran io fac ia l disf igurement acquired
l a t e r
in
l i f e .
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His to r i ca l Perspec t ive
Dr. Benjamin M
Spock,
in h i s
l a t e s t
book
B et t e r
World
For Our
Children, provides
a poignant
example
o f
the
negat ive a t t i t u d e s
confront ing
persons wi th
congeni ta l
de fo rmi t i e s .
On page
21 of
h i s book, Dr.
Spock
r e l a t e s a
s to ry t o ld by h i s mother and the impact the remarks made on
him.
She taught us tha t
s i n fu l
thought s were
as
harmful as
deeds,
and
to touch ourse lves down
the re"
was
not
j u s t
s in fu l
but might
cause b i r t h
defec t s
in
our ch i ld ren .
After
four
years o f medical school
and
four r es idenc ies , I thought
I had long outgrown such
t eachings ,
but I
reca l l
when our
f i r s t
ch i ld
was born I re turned from the h o s p i t a l ' s nursery
to my w i fe ' s room
to
exclaim happ i ly , Mike
has t en
f inger s
and t en toes "
Attorney
Allen
Fagin
spoke
a t the 1992 ~ o n f r n
on fac ia l disf igurement
and noted
t ha t un t i l r ecen t ly a
number
of
major
American
c i t i e s had
ugly
laws
tha t
imposed
f ines on "unsight ly" people who were seen i n pub l i c p l ace s .
An
example was t he Chicago municipal code
which, un t i l
1974,
f ined
persons
who appeared i n pub l i c who were "d i seased ,
maimed, muti la ted
or in any
way
deformed,
so
as
to be an
uns igh t ly o r d isgus t ing
ob jec t" .
In addi t ion , I found
examples
da t ing from Medieval
England.
One example da t ing from the l a t e
e leventh or
twe l f th cen tu ry
i s
the f i r s t
ev idence
for
both c l e f t l i p and
p a l a t e
in Br i t i s h
archaeology.
Desp i te
the i n a b i l i t y to
b reas t - f eed , and
the
poss ib le
soc ia l
s t igma,
the indiv idua l
had survived
in to
adul thood (CPJ) .
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Teasing
I ' d
l i ke
to begin t h i s sec t ion with a br i e f quote from
the book
Beauty i s
the Beast , Appearance-Impared Chi ldren
in
America ,
by Ann
Hil l
Beuf.
On Monday,
March
I , 1988,
an American
s ix th-grade s tudent
walked
in to
h i s
elementary
school c lassroom
and
shot himse l f .
He did
t h i s because h i s
classmates had
t eased him
about
being overweight .
Clear ly
the
t ime has
come
to address the problem of
t eas ing .
The
f i r s t
s tep in
confront ing
the i s sue of
t eas ing
i s
to give
t h i s ac t i v i t y
a
more appropr i a t e name: Verbal
Assaul t , based on d i s a b i l i t y
or
appearance.
In
a
sense, t
i s easy to unders tand
why
ch i ld ren
verba l ly assau l t those who look d i f f e r e n t . As
Dr.
McCurdy
s t a t e s in
h is
book The Complete
Guide to
Cosmetic
Surgery ,
Young ch i ld ren
are
extremely pe rcep t ive
of
d i f fe rences
in
appearance ,
and,
as they a re r e l a t i ve l y uninh ib i t ed in t h e i r
soc ia l i n t e rac t ions ,
such
d i f fe rences a re f ree ly poin ted
out .
Soc io log i s t ~ r e g o r notes t ha t der i s ive
l aughte r
i s
a l so a poten t
and
des t ruc t ive force . She wri tes These
reac t ions
to der i s ive
l augh te r
appear to be un iver sa l .
The
Hopi Indians , well
aware
of i t s
e f fec t ,
could and did
de l ibe ra te ly dr ive
an
offender in the community
to
i n san i ty
by
t he
s imp le
punishm nt
o f
l augh i ng
a t
h im .
;vi
~
Two othe r groups
o f
un l ike ly
offenders
are hea l th
care
prov iders
and
teachers .
When a ch i ld
i s
born
with
impaired
appearance,
many hosp i ta l s t a f f
members
employ
the term
F.L.K. ( funny
looking kid ) to desc r ibe
the
in fan t to one
another
(Beuf) .
Use of the F.L.K. term
c o n s t i t u t e s an
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act
o f
o b j e c t i f i c a t i o n . So does
any
use o f language that
r e fe r s to
the
c h i l d by h i s or her
d i s o rd er such
as the
c l e f t p a la t e in room 320
(Beuf ) .
That
i s , by
focus ing
on
the master- s tatus
o f
person-with- impaired-appearance and
thus
ignor ing
the t r a i t s p o s s e s s ed
by
the
c h i l d
as an
ind iv idual ,
the
s t i gm at i z e r manages to reduce
the
v ic t im to
the p os i t i on o f a th ing ra ther
than
a person
(Beuf ) .
T r i v i a l i z a t i o n was used
by
some doctors to
remind
the
ch i ldren of people who were worse o f f than they were, with
comments
such as ,
You're lucky you don' t have cancer .
Sure ly doctors do
not
s e t
out
to wound
the f e e l i n g s of t h e i r
young p at i e n t s , but they have been
taught
in
medical
schoo l
to judge
the
s e r iou s n e s s
o f
a medical problem in terms
of
i t s l i f e - t h r e a t e n i n g nature .
In a New York
Times s t or y
on phys ica l dis f igurement ,
author J i l l
Krementz
sa id that
whi le many o f the d i s f i gu r e d
ch i ldren
she
in terv iewed rece i v ed
support
from
t h e i r
p eers ,
a few were t ea s ed m e r c i l e s s l y or even
at tacked
by
schoolmates because o f how
they look.
The only
c h i ld r e n
who had r e a l l y pa in fu l t ime ~ m t h e i r peers were the ones
who
had
fac ia l
disf igurements
;
rementz
sa id
adding
t h a t ch i ldren
who
are miss ing l imbs
or
have other
d i s a b i l i t i e s
are more l i k e l y
to r e c e i ve comments
on
how wel l
they are
doing.
Krementz's o b s erv a t i o n s have been
noted by Macgregor
who s t a t es ;
there are two other handicapping aspect s
as s oc ia t e d
with d e n to - fac i a l
deformity .
In
the
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f i r s t place , the a rea in
and
around the
mouth i s
both emot ional ly charged and s t rong ly connected
with
one ' s
se l f - image .
As an ins t rument
of speech
and
ea t ing , as wel l as
a mirror of emotions, t
a l so has unique soc ia l and psychological
impl ica t ions
and
symbolic meaning. Any
abnormali ty in t h i s area , t he re fo re ,
i s not on ly
high ly v i s ib l e and obtrus ive but - as
research
has
shown -
t ends to
evoke a type
of
avers ion
which
i s
both
e s t h e t i c
and sexua l . ~
Teachers
a re another
source of problems
fo r
a f f l i c t e d
chi ldren (The Providence Sunday Journa l ) . Examples
c i t e d
by
Beuf include a
t eacher
r i d i c u l i n g a
s tudent
who l o s t a
contac t lense
and another who's home-room t eacher
d i dn ' t
see
the harm
of
a
s tudent
being ca l l ed Dumbo ears because
of
pro t rud ing
ea rs .
Legis la t ion
such
as
t he
American 's with
Di sab i l i t i e s
Act,
the
Rehab i l i t a t ion Act of 1973, and
the
r ecen t ly
passed
Washington Sta te b i l l
# 5474
on
D is a b i l i t y
Discr imina t ion
should be u t i l i z e d to prevent t he abuses c i t e d in t h i s
sect ion . Paren t s must be wi l l ing to f igh t fo r t he i r chi ld ,
Beuf
emphasized, and
why
they don ' t i s sometimes a
mystery .
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Speech
Speech i s
a
mirror o f
the soul ;
as
a
man speaks , so i s he.
Publ i l iu s Syrus , c i r c a
42 B.C.
Speech
i s a concern tha t
separa tes c l e f t
pa la te
from
some othe r c ran io fac ia l d iso rder s . The psychological
impl ica t ions
of speech present
cha l lenges
to
the
a f f l i c t ed
indiv idua l
from infancy
through
adulthood.
Clef t
pa la te
ch i ld ren
are a t
r i sk
for
language
development
problems.
screen ing
device to address t h i s
i ssue was the
subject
of a recent
s tudy.
The Parent
Ques t ionna i re
for
Screening
Ear ly
Language Development in
Chi ld ren wi th Clef t
Pala te
i s
the
titl of
t he paper .
Thi r ty sub jec t s , 16 to
30
months
of age rece ived the
MacArthur Communicative Development
Inventory:
Toddler
(CDI:Toddler) . cont ro l group was
a l so
t e s ted . Both
groups
received a speech language sc reening.
Resu l t s
indica ted t ha t the
CDI:Toddler was
a
va l id
sc reener
of
language development.
The
c l e f t
group demonstrated evidence
of
delays in
express ive
language
development . The
c l e f t
group had
a
mean
vocabulary of 177 words, compared with
288
words
for the
cont ro l group. The
c l e f t group
used
shor t e r ,
l e s s
complex
sen tences . I n t e l l i g i b i l i t y was poorer in
the
c l e f t
group.
Within
the
c l e f t
group,
hypernasa l i ty ra t ings of moderate
and severe were assoc ia ted with
express ive language de lays .
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Adult
c l e f t pa la te
popula t ions
are a l so a t
r i sk
for
impaired speech
concerns , when r e l a t e d to employment, as
demonst ra ted by two s tud ies . From a psychological
s t andpo in t Neiman
and
Duncan emphasized the importance o f
speech. This s tudy revealed t ha t speech
was
t he
s in g l e
fac to r
tha t
adverse ly a f f ec t ed t he se lec t ion
of
pres t ig ious
jobs even in
the
presence
of
a f a c i a l dis f igurement . I t
would
appear
t ha t speech
should be given
top pr i o r i t y .
(Lehman,
J r . , MD 1993)
I spoke with Dr.
Lehman
about t h i s s tudy, where photos
of persons
wi th
both un i l a t e r a l
and
b i l a t e r a l c l e f t l i p
and
pa la te were
shown to a
personnel manager.
Also presen ted
were t ape recorded
voices ,
both
normal
and hypernasal
speech.
The hypernasal
speech
was
much
l e s s
l i ke ly
to be
viewed as
having the
communication s k i l l s
needed
in
the
marketplace.
Another
s tudy
was
conducted
by
Dr.
Jane
Scheuer le
a t
the Tampa Bay Craniofac ia l Center . In t h i s t e s t adu l t
c l e f t
pa la te
sub jec t s voices were t ape
recorded, both
preopera t ive
and
pos tope ra t ive . The
recorded
voices
were presen ted to
a
panel
of th ree bus iness persons
for
eva lua t ion as
employees.
The
r e s u l t s favored
the
pos tope ra t ive voices unanimously.
Adult
speech i s sues were a l so
noted
a t the F i r s t
In te rna t iona l
Symposium
fo r Long Term
Treatment
in C le f t Lip
and
Pa la t e
a t the Univers i ty
of
Bern,
Swi tzer land . When an
adu l t
does
not
speak
cor rec t ly , those around
him
no t ice
t
immediately,
and
specu la t e whether or
not
the
af fec ted
person
i s
of
normal i n t e l l i g e n c e .
For t h i s
reason,
we
fee l
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t h a t cor rec t
speech has
many important
consequences . (J .
Weissen, 1979) From
the
beginning our team
considered
speech eva lua t ion
and
speech therapy as most important ,
because recep t ive speech, i . e . t ha t which one hears , i s
dependent on the
en t i r e
environment ( i . e . 36 degrees)
as
opposed to
the
ope ra t ive cosmetic r e s u l t which i s only
v isua l ,
i . e . maximal f i e l d
of
180 degrees .
(Weissen
M Bet tex ,
1979)
Goffman's view of c ran io fac ia l handicapping condi t ions
expressed
the
subject e sp e c i a l l y wel l . The c lose r the
de fec t
i s to
the communication
equipment
upon
which the
l i s t ene r
must
focus
h i s
a t t e n t ion , the smal le r the
defec t
needs
to
be to throw the l i s t e n e r off balance.
These
de fec t s
tend to
shut o f f the a f f l i c t e d indiv idua l from the
st ream of da i ly con tac t s , t rans fo rming
him
i n to a fau l ty
in te rac tan t , e i t h e r
in
h i s eyes o r
in
the eyes
of
o ther s .
Sigmund Freud was
an
i nd iv idua l who
su f fe red
acquired
speech impairment. In Apri l , 1923, Freud underwent surgery
for pa la ta l cancer . More ope ra t ions fol lowed in the
f a l l
and Freud
was compelled
to
wear a pros thes i s . He
had
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Bib l iography
1. Robert
W Blakeley ,
Ph.D. ,
Pro fes s o r
o f
Speech
Pathology,
Direc to r , Cran io fac i a l Disorders
Program,
Oregon Heal th Sciences
Univers i ty ,
CDRC Por t l and , OR
Personal communication
and
photographs .
2. The
Clef t Pa la t e -Cran io fac i a l
Journa l
(CPJ) ,
January
1995, Volume 32,
number
I , American Clef t
Pa la t e -Cran io fac i a l
Associa t ion (ACPA). "The Role
of
Maternal Facto rs in
the
Adapta t ion o f C hi ld ren wi th
Craniofac ia l
Disfigurement" by Les l i e Campis, Ph.D. ,
David Ray DeMaso,
M.D.,
and
Al l i son
White Twente,
Ph.D.
3.
CPJ, January
1995,
Volume
32,
number I ,
ACPA
Paren t
Ques t ionnai re
for Screening Ear ly
Language Development
in
Chi ld ren wi th C le f t Pala te 1993, Nancy Scherer , Ph.D
and Linda L.
D'Antonio,
Ph.D.
4. CPJ, November 1994, Volume
31, Number 6, ACPA
"Medieval
Example o f Cle f t Lip
and
Pa la t e from St . Gregory ' s
Pr io ry , Canterbury" , by Trevor Anderson, M.A.
5.
CPJ, September 1993, Volume 30, Number 5, ACPA
"Psychological
Funct ioning
of
Chi ld ren wi th
Craniofac ia l
Anomalies and Thei r
Mothers:
Follow-Up
from Late Infancy to
School
Entry"
by
Matthew
L.
Spel tz , Ph.D. ,
Kathi Morton,
Ph.D. ,
El izabe th
W Goodel l , Ph.D. , S t e r l i n g
K.
Clar ren , M.D.
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6. Dr. Benjam in M. Spock,
A
Bet te r World For Our Children"
Nat ional
Book
Network,
1994
7. National
Foundation For Fac ia l
Reconst ruc t ion
(NFFR),
Conference
Proceedings of 11/18/92, "Specia l Faces:
Understanding Fac ia l
Disf igurement . "
8. AboutFace news le t t e r , May/June 1992, Vol. 6, No.3 ,
Rita Brzozowski,
A
Mother ' s F i r s t
Lesson",
cover s to ry .
9.
Weissen, J . ,
Speech
Therap i s t , Department of
Ped ia t r i c
Surgery,
Inse l sp i t a l ,
CH-3010
Berne.
Proceedings of
the
Fi r s t In ternat ional Symposium, Long Term Treatment
in
Cle f t
Lip and
Pala te , August,
1979, Univers i ty
of
Bern,
Switzer land.
10
Jim
Lehman,
J r . ,
MD, AboutFace
Newsle t t e r ,
March/Apri l ,
1993,
"Ask a Profess iona l
column
and persona l
communication.
11
Ningyi Li, MD,
DDS, Professor
and Chairman,
Department
of
Stomatology,
Qingdao
Univers i ty Medical
College and
Hospi ta l ,
Qingdao,
Shandong,
The Peoples Republ ic of
China. Personal communication.
12 The Complete
Guide to
Cosmetic Fac ia l
Surgery ,
John A.
McCurdy,
J r . ,
M
FACS, 1981, Freder ick
Fel l
Publ i shers ,
Inc .
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13. Ann Hil l Beuf, "Beauty i s the Beast ;
Appearance
Impaired
Children in America", 1990,
Univers i ty of
Pennsylvania
Press .
14.
Kathleen
Stassen
Berger, "The Developing
Person
Through
the Li fe Span", t h i rd
ed i t ion 1994, Worth
Publ i shers
15.
Samual
Berkowitz, DDS,
MS
FICD,
"The Clef t
Pala te
Story" , 1994, Quintessence
Publ i sh ing
Co.,
Inc.
16. The New
York
Times, Thursday, October 1, 1992, "Parent
& Child" by
Lawrence
Kutner.
17. Frances
Cooke Macgregor,
M.A.,
Social
and Psychological
Impl ica t ions of
Dento-Facia l Disf igurement ,
1969
18. The Providence Sunday Journa l October 7, 1990,
by
Rosemary Jones
of
the
Allentown
Morning Cal l .
19. Thurston County Works in Progess , November 1994,
Legis la t ive
Report
Card,
D is a b i l i t y b i l l
20.
Clef t Pa la te
and Clef t Lip: A Team
Approach to
Clin ica l
Management
and Rehab i l i t a t ion of the
Pat i en t .
1979,
W.B. Saunders
Company
21. Sigmund Freud, In t roduc tory Lectures
on Psycho-Analys is
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1966, W.W. Norton Company,
I n c .
Pe t e r Gay, i n t ro .
22. Dr. Jane Scheuer le Co-Direc to r Tampa Bay
Craniofac ia l
Center , Tampa,
Flor ida
personal communicat ion 1993.
23.
Goffman, E. Al iena t ion from i n t e r a c t i o n ~
Rela t ions 1957.
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LIFESPAN HUMAN DEVELOPMENT
J e r ry Shulenbarger , Facu l ty
Winter Q u ar t e r , 1995
Research
paper
t op ic :
What a re
some
psychosocia l i mp l i ca t i o n s
o f
congen i ta l
c ra n i o f a c i a l anomalies? What f ac to r s c o n t r i b u t e t o the
cu r ren t s i t u a t i o n ?
br i e f
h i s t o r i c a l ,
compara t ive
survey
o f
per t inen t
sc ience
and noted t h in k e r s .
At t h i s poin t I am submi t t ing my t o p i c
as
out l ined
above,
as opposed to a diagram, because I m n o t exac t ly sure
where the research wi l l t ake me. I have ordered
some
exce l l en t
books
on
the
sub jec t
o f c r an io f ac i a l anomalies and
need to read
them.
I
w i l l
a l so r e f e ren ce s ev e ra l cur ren t
mainst ream
publ i ca t ions
as
p a r t o f my
p r o j ec t .
My research
wi l l
a l so
inc lude inpu t from h ea l t h ca re p ro fe s s i o n a l s i n
the Pie ld and
t h e i r
r e s ea rch .
Submit ted
by:
Neil
J . G i l l e s p i e
866-7400
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.
r ~ r f P4//lte.. C; /I#iOMU/1 /
)'dvfULv9/
.rl1
l.lr J 7 /916
Vel
~ I
The Role of Maternal Factors
n
the Adaptation of Children
with Craniofacial Disfigurement
LESLIE BIRON CAMPIS,
PH.D.
DAVID RAY
DEMASO, A.D.
ALLISON WHITE TWENTE,
PH.D.
This study hypothesized that maternal adjustment, perceptions, and social
.
support would better predict child adaptation to craniofacial disfigurement than
_
medical severity. Mothers of 77 children (ages 6-12 completed the Child Behav
ior Checklist, Beck Depression Inventory, Spielberger Trait Anxiety Scale, Social
Support Questionnaire Revised, and Parenting Stress Index. Medical severity
was assessed by the number of operations (craniofacial and other), comorbid
medical conditions, and the Hay Attractiveness Scale. The children and moth
ers in our sample resembled a normal population n terms of their psychologi
cal functioning and quality of the mother-child relationships. Maternal adjustment
and maternal perceptions of the mother-child relationship were more Dotent
predictors of children s emotional adjustment than either medical severity or mater
(
nal social support.
KEY
WORDS:
adaptation child adjustment craniofacial disfigurement
maternal adjustment medical severity mother-child
relationship social support
Craniofacial reconstructive surgery has progressed dra-
The variability in children's adjustment as
described
in
matically in the last several decades. New surgical tech-
these studies may in part be accoun ed for by the hetero:
nology
has
given children
with
craniofacial anomalies
geneity in diagnosis, age, methodology, and outcome mea-
significantly improved appearances and social acceptance
However, children with craniofacial conditions do
(Murray et aI., 1979). Along with these advances, inter-
appear to have
the
potential for healthy
adjustment.
est
in
examining
the
emotional adjustment of children
Researchers have identified protective factors in other
with
craniofacial abnormalities
has
generated increased
vulnerable populations which help children cope with
research. To date, the findings
of
these studies have
been
challenging life events
(Garmezy,
1981, 1985; Beardslee,
highly variable.
1989; DeMaso et aI., 1991). The protective factors which
A
number
of
studies have reported
that
children with may ameliorate the negative aspects
of
living
with
facial
craniofacial disfigurement have difficulties in psycho disfigurement have
not been well
defined
(Bennett
logical
adjustment, which include a diminished self-con
Stanton, 1993).
cept (Arndt et aI., 1986; Kapp-Simon, 1986: Pillemer and
Maternal emotional adjustment may be an influential
f
Cook, 1989), lowered school achievement (Brantley and
determinant
of
the emotional adaptation of children with
Clifford, 1979a; Kommers and Sullivan, 1979), marked
craniofacial
abnormalities. The substantial emotional
,social
inhibition (Kapp-Simon, 1986; Pertschuk
and
impact on parents when they learn of their child's mal-
Whitaker, 1988; Pillemer and Cook, 1989), and greater
formation has been documented in the literature. Brant-
dependence on adults (Pillemer and Cook, 1989).. ley and Clifford (1979b) found that mothers of children
trasL other researchers found these children to
have
psy
_with cleft lip
and/or
palate reported significantly greater
chosocial adjustment comparable to that of nonnal children_
negative recollections of the postnatal period than moth-
(Richman, 1983; Arndt et aI., 1987). Postoperative mea
,
ers of normal children. Similarly, Speltz
et al. (1990)
sures revealed improvement in
children's
self-concept,
reported that mothers of children with facial abnormali
adaptive
behavior,
and school
functioning. ties
experienced significantly greater
stress, felt less com-
petent, and experienced more marital conflict than a control
group. In contrast, Palkes et ai. (1986) found that children
Dr. Campis is Instructor in Psychology,
Dr
DeMaso is Assistant Profes-
with craniofacial disfigurement did not have a negative
sor of Psychiatry and Dr. Twente is Instructor in Psychology, Department
of Psychiatry at Harvard Medical School and Children's Hospital, Boston,
impact on parent's adjustment or a family's structure.
Massachusetts.
The interaction between mother and child is another criti-
This study was funded in part by a research grant from the Foundation for
cal factor in detennining the psychological adjustment
of
Faces of Children.
children (Rutter, 1986; Speltz et aI., 1993). Mothers' per-
Submitted October 1993; Accepted August 1994.
ceptions regarding their parenting skills and interactions with
Reprint requests: Dr. Leslie Biron Campis, Department of Psychiatry,
Children's Hospital, 300 Longwood Avenue, Boston, MA 02115.
their children may facilitate
or
hinder a child's adjustment
55
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56 Cleft Palate-Craniofacial Journal, January 1995,
Vol
32 No. 1
(Holroyd and Guthie, 1986; OeMaso et aI., 1991). There has
been some examination of mothers' feelings and perceptions
regarding their interactions with their children with cranio
facial conditions (Field and Vaga-Lahr, 1984; Palkes et aI.,
1986; Barden et aI., 1989; Speltz et aI., 1990). Field and
Vega-Lahr (1984) found that these mothers were less active
in their interactions and their infants made less eye contact
·than nonnal children. Consequently, their interactions were
getennined to be significantly different from those of nonnal
infants and mothers.
~ e n
et at (1989) found that the moth
ers
of
children with craniofacial malformations reported more
personal and general life satisfaction than mothers
of
a healthy
control group. However, behavioral obselVations
of
the mother
· infant interactions demonstrated less nurturant relationships.
In contrast, Speltz et aI (1990) found no qualitative differ
ences in the interactions of children with craniofacial condi
tions (ages 1-3 years) and their mothers when compared to
a normal sample. The two groups of mothers were observed
to be equally responsive, critical, and instructive to their chil
dren. Their children were also equally responsive and active.
Similarly, Palkes et
aI
(1986) described parents as no less
accepting of their facially disfigured child or their parenting
responsibilities.
The extent and quality of a mother s social support net
· work
has been
identified as a m e i t i n ~
variable that
buffers the stress of having a child with a physical hand
icap (Barakat and Linney, 1992). Researchers have found
greater
social
support
to correlate with both
better parent
(Jessop
et
aI., 1988; Kronenberger and Thompson, 1992)
and child adjustment (Barakat and Linney, 1992). This vari
able is particularly
important
to study in children with
craniofacial
anomalies
as this parent
group
appears to
be
at greater risk for limited social support. Benson et aI.
(1991) and Speltz
et
aI. (1993) found that parents of chil
dren with visible facial deformities reported less social sup
12 2IL
Parents in the Benson et al. study were also less
satisfied with the
quality
of their social support. In con
,trast, Krueckeberg and Kapp-Simon (1993) found no dif
ferences in the
social
support
networks
of
parents
of
children with craniofacial conditions and a control group.
These studies assessed social support of parents whose chil
dren ranged in age from preschool to 7 years. Speltz et
ai. (1993) hypothes ized that social support decreases
over
time because of the negative effect of greater social expo
sure. It is important to study this variable in a school age
population.
It has been assumed that children with severe facial dis
figurement are at
greater
risk for disabling psychopath
ology. However, Macgregor (1979) disputes the validity
of
this assumption.
The
severity of medical impairment
has not proven to be a significant contributor to the
emotional adjustment
of
children with other physical ill
nesses (Stein and
Jessop,
1984; Mullins et al., 1991).
Researchers who have investigated medical severity or
its occurrence have found maternal adjustment (Walker et
aI., 1989), social support (Barakat and Linney, 1992), and
maternal perceptions (OeMaso et aI., 1991) to. be more
strongly associated with better child adjustment. Kruecke
berg and Kapp-Simon (1993) noted the need for more
studies to clarify whether severity
of
a craniofacial prob
lem or the mere presence of a
problem
is a crucial factor
in these families.
Maternal
emotional adjustment, relationship with their
children, and social support along with medical severity
of
a craniofacial condition have been identified as potential
influential factors in the adaptation of children with cran
iofacial conditions. This study uniquely examines the rela
tive contributions of all these variables to child adjustment
in a school age sample
of
these children. The maternal vari
ables were hypothesized to be significantly more predictive
of child adjustment than measures of medical severity.
METHODS
Subjects
The study was conducted in three outpatient settings
at Children s Hospital: (1)
Craniofacial Centre
Clinic,
(2) Cleft Lip and Palate Clinic, and (3) Outpatient Plas
tic Surgery Clinic. The subjects were 77 mothers whose
children
(ages from 6 through 12 years) were diagnosed
with an observable craniofacial anomaly. The children
(44 boys and 33 girls) had a mean age
of
8.1 years (SO
=
2.0). Table 1 lists
additional
sample
characteristics.
Mothers of children in a self-contained special
needs
classroom were excluded from the study. This study sample
was
part
of a larger sample of 100
mothers
and
children
between
the ages
of
6 and
17
years. In this
larger
study,
TABLE Sample Characteristics 0=77)
haracteristic
n
ojSample
Ethnic Group
White
67 87
Hispanic 4
5
Black
3
4
Other
3
4
Marital Status
Married
56
73
Divorced
15 19
Separated
3 4
Single 3 4
SES*
Major Business/Professional 21
27
Medium Businessrrechnical
23 30
Skilled Craft/Clerical 18 23
Semi-skilled
6 8
Unskilled
5
7
Craniofacial Diagnosis
Cleft lip and/or palate
33 43
Facial microsomia
8 23
Unilat. coronal synostosis
11
5
Vascular ano mal ies
6
8
Syndromic
craniosynostosis
4
5
Frontonasal dysplasia
4 5
Acquired facial deformity 1 1
*Dala
nor availahle on four subjecrs,
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1 5
mothers were approached consecutively with five declin
ing to participate in the study.
Prior
to their clinic appointment, potential
participants
were mailed a letter informing them
of
the study's purpose.
The
research assistant invited mothers to participate in the
study while they waited
for their child's appointment.
Informed consent was obtained from all mothers, who then
completed
the
questionnaires
and
received
five
dollars
for
~ h e i r
participation.
Dependent Variable Measure
Child djustment
Measure
The Child Behavior Checklist (CBCL)
was
completed
by each mother (Achenbach
and
Edelbrock,
1983).
The
behavior problems measure of
the
CBCL
was used in this
analysis.
This measure
consists of 118 items which assess
internalizing
and
externalizing behavior
problems; an
overall
T
score
of
psychological adjustment
is
calculated
from these
subscales. Achenbach
and
Edelbrock (1983)
reported high test-retest
reliability
and good discriminant
validity.
Predictor Variable Measures
Demographic Variables
The
following
demographic
information was collected:
child's age, sex, and race; parent's occupation and level
of
education (Hollingshead, 1975); and marital status.
Maternal djustment
The Beck Depression Inventory (BDI) is a self-report mea
of depression (Beck Steer, 1987). The BDI has
21
syn1ptom-attitude categories which represent characteris
tic manifestations
of
depression. It has clinically validated
severity cutoff scores and extensive data regarding its accept
able psychometric properties (Derogatis, 1982).
. The Spielberger Trait Anxiety Scale (STAS) is a self-report
symptom mood inventory (Spielberger et aI., 1983). The
STAS, which contains 20 statements concerning how an indi
vidual feels, is designed to provide a measure
of
an endur
ing
personality
characteristic,
as
opposed
to a
transient
emotional experience. This scale has good internal stability
and construct validity (Derogatis, 1982).
Maternal Perceptions
The Parenting Stress Index (PSI) identifies parent-child sys
tems under excessive stress and at risk for the development
of dysfunctional parenting behaviors
or
child behavior prob
lems (Abidin, 1986). This 126-iten1 measure is divided into
Child and Parent domain subscales. The Child domain sub-
Campis et al.. MATERNAL
FACTORS IN
DISFIGUREMENT
57
scale assesses child temperament and the extent to which
these child characteristics are stressful to the parent. High
scores are associated with child qualities that interfere with
parenting.
The
Parent domain subscale evaluates parents'
personal characteristics and social support system as they
correspond to the demands
of
parenting. High scores indicate
that the parent characteristics are a potential source
of
dys
function in the mother-child relationship.
Although each mother comple ted the entire PSI, four
of
the
six Child domain subscales (Adaptability, Demandingness,
Mood, and Distractibility) were deleted because
of
their sub
stantial overlap with CBCL items. The remaining subscales
of
Child Acceptability and Child Reinforces Mother were
used as a more accurate measure
of
mother-child interaction
(DeMaso et aI., 1991). The Parent domain subscale was left
unchanged. The PSI has a reliability coefficient of .95 for the
total stress score.
Maternal Social Support
The Social Support Questionnaire Revised (SSQ) is a mea
sure
of
an adult's perceived level
of
social support available
from family and friends (Sarason et aI., 1987). The SSQ mea
sures the extent of the social network as well as the individ
ual's
degree
of satisfaction with their social support. The
questionnaire items posit different situations and the respon
dent lists supportive persons (up to nine people), character
izes their relationship with supportive persons (whether a
family
member or
friend), and rates their degree of satisfac
tion with the support provided. Two scale scores are derived
from the average number of persons listed (the number score)
and the average satisfaction rating (the satisfaction score).
Acceptable reliability coefficients for the total scale have
been reported at
or
above .75.
Medical Severity Measures
Medical data were collected
on
all children from medical
chart review.
The
craniofacial diagnosis was also recorded.
Information was obtained regarding: (1) number of cranio
facial operations, (2) number of noncraniofacial operations,
and (3) comorbid medical conditions. Comorbid medical con
ditions were defined as other problems requiring ongoing
monitoring or medication.
They
were
coded
none, minor
(e.g., otitis media),
or
major (e.g., seizures).
The
Hay Attractiveness Scale (HAY) was used to provide
an objective rating of physical appearance (Hay and Heather,
1973). The scale has nine points ranging from perfect features
(1) to very marked imperfection (9).
Each
child was assigned
an appearance rating by the research assistant at their hospi
tal visit. Interrater consistency was also assessed. Another
researcher familiar with the craniofacial population provided
appearance ratings for 25 randomly selected p r t i c i p ~ n t s
Comparison of the ratings revealed an 85% agreement WIthIn
one point on the scale.
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7
58 Cleft Palate-Craniofacial Journal, January 1995,
Vol.
32 No. 1
TABLE 2
Means
and Standard Deviations·
Measure
Mean
SD
Maternal Adjustment
BDI
5.04
5.00
STAS
36.45 7.88
Maternal Perceptions
PSI Child Domin
24.30
6.40
PSI Parent Domain
151.56 39.82
Maternal Social Support
SSQ Family Support
t
2.59
1.53
SSQ Friend Support
t
1.18
1.00
SSQ Satisfaction
5.21
1.09
Medical Severity
Total Operations
3.45
2.77
Craniofacial Operations
2.60
2.37
Comorbid Medical Problem
1.71
0.69
HAY
3.75
1.82
Child Adjustment
CBCL
55.84 11.00
*BDI = Beck Depression Inventory: STAS = Spielberger Trait Anxiety Scale; PSI = Parenting
Stress Index: SSQ = Social Suppon Questionnaire - Revised; HAY = Hay Attractiveness Scale:
CBCL =Child Behavior Checklist.
t
p
< .01.
RESULTS
Descriptive Data
Nine measures were used in these analyses: BDI, STAS, three
subscales of the SSQ, child and parent domains of the PSI,
HAY,
and the behavior problems measure of the CBCL. Oper
ations and comorbid medical problems were additional mea
sures used to assess medical severity. Means and standard
deviations are reported in Table 2.
The sample mean scores on the BDI, STAS, PSI, and CBCL
were all within the normal range. When the mean scores of
the SSQ were compared with the nonnative SSQ data, this
sample reported significantly more Family support and less
Friend support (p < .01). This sample's overall Satisfaction
rating was comparable to that of the normative group.
Intercorrelations between Maternal Factors
Intercorrelations were calculated to measure associations
between maternal adjustment and maternal perceptions. Given
the large number of correlations in this study, the signifi
cance level was set at the more stringent
.01
level for this and
subsequent calculations. The maternal adjustment and per
ception variables were only minimally correlated (Table 3).
Both Parent and Child domains
of
the PSI were significantly
linked to maternal reports of anxiety and depression, such that
mothers who reported more stress also reported increased
levels of anxiety and depression. The social support vari
ables were not related to maternal adjustment or maternal
perception. Global satisfaction with social support was only
significantly related to social support provided by family.
Influences on Maternal
Factors
Demographic Variables. Pearson correlation coefficients
were calculated to measure associations between demographic
TABLE
3
Intercorrelations among Matern al Adjustment
and
Maternal Perception
Variables·
Maternal Perception
Adjustment
Variables
1
2
3
4
5 6
PSI-C
PS -P SSQ- SSQ- SSQ- ST S BD
F FR
S
1. PSI-C
2. PSI-P
.58'
3.
SSQ-FA -.27 -.05
4. SSQ-FR -.11 -.19 -.05
5. SSQ-SA -.23 -.15 .34
t
.26
6. STAS .312
t
.30
t
-.01 -.14 -.10
7. BDI
.44
t
-.28 -.14 -.10
*PSI = Parenting Stress Index. Child Domain (PSI-C) and Parent Domain (PSI-P):
SSQ
=
Social
Suppon
Questionnaire - Revised Family (SSQ-FA) Friend (SSQ-FR).
and Global Satisfaction (SSQ·SA); STAS =Spielberger Trait Anxiety Scale;
BOI = Beck Depression Inventory.
p
< .01.
.p< 001
variables and the following measures: BDI, STAS, SSQ, and
PSI. There was a significant negative correlation p
<
.00 1
between SES and amount of social support from friends.
Mothers in lower SES families reported less social support
from friends. No other correlations were significant.
Medical Severity Measures. Since the medical severity
measures (operations, comorbid medical conditions, and
HAY) were skewed by some extreme values, Speannan rank
correlation coefficients were calculated to measure associa
tions between medical severity variables and the measures of
maternal adjustment and perception. No statistically signifi
cant correlations were found.
Predictors of Child Adjustment
Demographic Variables. Pearson correlation coefficients
were computed to detennine the relationship between the
demographic variables and child a d j u s t m e n t : l ~ ~ o n e of the
demographic variables were significantly correlated with
CBCL scores. Analysis of variance models using categorized
demographic variables to predict CBCL scores were con
structed and showed no significant effects for these variables.
Maternal Adjustment and Perceptions. Correlations between
the maternal adjustment, maternal perception, and child adjust
ment variables were also completed. Several significant pos
itive correlations were found (Table 4). The STAS, the BDI,
and the PSI (both Child and Parent domains), were all highly
correlated with the CBCL. Mothers who reported symptoms
of anxiety and depression described their children as more
TABLE 4 Pearson Correlation Coefficients for Child Adjustment
and
Maternal Adjustment,
Perception,
and
Social
Support Variables·
Child STAS BDI SSQ- SSQ-
SSQ- PS -C PSI-P
djuSTment F FR S
CBCL
-.17 -.14 -.26
*STAS =Spielberger Trait Anxiet)' Scale: BDI =Beck Depression Inventory: SSQ =Social Sup
pon
QUt'stionnaire - Revised Family (SSQ-FA). Fncnd(SSQ-F R). and Global Satisfaction (SSQ
SA): PSI
=
Parenting Suess Index. Child Domain (PSI-C) and Parent Domain (PSI-P): CBCL
=
Child Behavior Checklts .
p
< 001
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maladjusted.
In
addition, the relationship between the PSI and
the CBCL indicates that stress within the mother-child rela
tionship was associated with child maladjustment.
Medical Severity Measures.
Speannan rank correlation coef
ficients showed no significant correlations between the med
ical severity measures and child adjustment. Additionally,
analysis
of
variance models using categorized medical sever
ity variables were tested. A significant effect was found for one
medical severity variable, comorbid medical conditions F=4.39,
p
<
.016).Aseries of planned comparisons revealed that
the
group
. with the most severe comorbid medical conditions had the
est CBCL scores. This group had more adjustment problems
than did children with mild or moderate comorbid medical con
ditions. The groups with mild and moderate comorbid medical
problems did not differ statistically.
Differential Contributors to
Child
Adjustment
The relative importance of specific measures in predicting
child adjustment was detennined next. First, the large set
of
predictor variables was reduced by creating a single sum
mary score (accomplished by summing standardized scores
of the individual variables) to represent each of the four vari
able domains: (a) maternal adjustment, STAS and BDI; (b)
maternal perception, PSI Child and Parent domains; (c) mater
nal social support,
SSQ
family, friend, and satisfaction; (d)
medical severity, operations, comorbid medical conditions,
HAY appearance rating.
A series
of
iterative multiple-regression analyses (Cohen and
Cohen, 1983) were then conducted using the set of four key
variables. Iterative analyses were completed so that each of
the four variables were entered last into the regression equa
tion. This approach provided an examination
of
the unique
contribution of each specific variable above and beyond the
variance explained by the other summary variables. The strat
egy also allowed for a test
of
the central hypothesis that
maternal adjustment and maternal perceptions would be more
predictive of child adjustment than medical severity.
The total variance in child adjustment explained by the set
of four summary variables was 38% (Table 5). As hypothe
sized, both maternal adjustment and maternal perceptions
made unique contributions to the explanation
of
child adjust
ment. Neither medical severity nor maternal social support
TABLE 5 Summary of Multiple Regression Analyses Predic ting
Child Adjustment·
Predictor Correlation Beta Uniqul
Variables with DV
Contribution
Maternal Perception .53' .35
.087§
Maternal Adjustment .47' .34 .086'
Medical Severity .13 .18
.030
Maternal Social Support
-.27 -.06
.003
*TotaJ variance accounted for
by
model. R2 =
.38;
tCalculated as incremental change in multiple
R;
'P<
.001;
'Significant incremental change at p
< 05
level.
Campis et al.. MATERNAL FACTORS
IN
DISFIGUREMENT 59
contributed significantly above and beyond all other vari
ables to the total model.
DISCUSSION
The findings
of
this study support the psychological resiliency
and adaptive potential
of
children with craniofacial conditions
and their mothers. Mothers' emotional adjustment and per
ceptions of their relationship with their children were more
potent predictors of children's emotional adjustment than the
severity of the craniofacial anomaly. This finding corresponds
to other studies in which illness severity was less important
to a child's adjus tment than maternal functioning (Spaulding
and Morgan, 1986; Walker et aI., 1989). Furthermore, the
children and mothers in our sample resembled a normal pop
ulation in tenns of their psychological functioning and qual
ity
of
the mother-child relationships.
While there were no significant differences in maternal
adjustment between these mothers and a normal population,
this finding must be interpreted cautiously. This sample had
,a slightly higher means SES than the normative samples of
_the predictor variable measures. Mothers who did report clin
ically significant levels of depression and anxiety also rated
their children as having more behavior problems. This find
ing is consistent with that of Barakat and Linney (1992) who
found that maternal psychological functioning was related to
child adjustment. An impaired mother-child relationship,
including under involvement or overprotection, has been con
ceptualized as an important etiologic factor in childhood
depression (Weller and Weller, 1991). The presence
of
mater
nal maladjustment in a family with a chronic medical illness
may place a child at greater risk for the development of emo
tional difficulties.
The Parenting Stress Index (PSI) was found to have a strong
relationship to children's emotional adjustment. Within the
Child domain on the PSI, mothers reported their interactions
with their children to e reinforcing and felt acceptance of their
child. As measured by the Parent domain, the mothers of the
well-adjusted children described greater emotional closeness
and empathy in their relationships, despite the degree of med
ical severity. Speltz et a1 (1993) hypothesized that child adjust
ment in this population can be predicted from observations
of
parent-child interactions. These researchers discovered that
mother's child-directed orientation in a play task was predic
tive
of
lower
CBCL
scores at 4 -year follow-up.
Contrary to expectations, maternal social support was not
highly associated with child adjustment. Other researchers
(Speechley and Noh, 1992) have found the extent of social
support to be inversely related to psychological distress for
mothers. The population in this study appears to be different
in this regard. The mothers had small social networks which
were primarily comprised of family members. Benson et a1
(1991) and Speltz et a1 (1993) also found that parents of
children with craniofacial conditions reported decreased social
support systems. Despite this, mothers appeared to be con
tent with the extent and composition of their social network.
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60 CleftPalate-CraniofacialJournal,January1995,Vol. 32No. 1
Suchinsularsocialnetworksmay be relatedtotheunique
socialstresseswithwhichthispopulationmustcontend.Par
ents
of
childrenwithcraniofacialdisfigurement!paybeless
emotionallyrelianton socialsupportbecausesoci,alrejection
of theirchildisgreaterintheelementaryschoolageyears.
Thismayalsoaccountformothers'tendencyto relyon rel
ativesforsocialsupport,instead of friends. Limitingsocial
contactoutsidethefamilymayserveaprotectivefunctionin
reducingthechildandparent'ssenseof stigmatization.How
ever,thedependenceon familymembersmay alsobestress
ful, in thattheserelationshipsarepotentially more conflict
riddenandlessamenableto change (Coyneand Delongis,
1986;Sarasonetal.,1990).Beforeconclusionscan bedrawn
aboutthequalitativedifferencesinthis
group's
socialsup
port system replicationof this finding with a similar age
groupisnecessary.
The
of
facial disfj2urement
had
0 0 relationship
.tochild
or
maternalpsychologicalfunctioning or tomater
nalperceptions.However,
having
a
comorbid severe med
.ical
condition
was
related to
greater behavior problems
in
_children.The impact of additional
illnesses may
multiply
thestressto children
and
their family
systems.
The rna'or limitation of thiss tud is that
the
evaluation
of child adjustment relied
on
parent report.There were
no
other
sources
of information
of child
behavior
to
corrob
orate the mother's view. In
addition,
emotional malad
justment
inmothersis related tonegative
maternal
reports
of
children's
behavior
(Brody
and
Forehand,
1986;Fried
lander etal.,1986).Despite thisfinding,these
researchers
found thatdepressed mothers werestillable to differenti
ate children with and without
emotional problems,
sup
portingthecriterionvalidityof theCBCL. However,causal
relationsbetween maternal variablesand child
adjustment
can notbederivedfromthepresentstudy
given
itsmethod
ological limitations.
Future
studies
should
use
multiple
informants ina longitudinal assessment of the children
withcraniofacial conditions.
Despitethepresenceof acraniofacialmalformation, chil
dren have thecapacity for healthy psychological adjust
ment in
the school age years.
This study supports the
. important association
between
the
mother-child
relation
ship and children's psychological
adaptation.
Given the
small nUITlber of minority families
and
the
predominance
of upper
SESfamiliesinthisstudy 2eneraJjzatioD
Of these
findingstoamore
heterogeneous population
must
be
done
with caution.
The
findingsare
strengthened
bythe
sample
sizeand theinclusionof alimitedagerange to control for
theeffectsof developmentaldifferences.Itisimportantthat
future studies assess whether the mother-child relation
shiphas adirectand moderating effect
on
the
psycholog
icalandsocialstress of facial disfigurement.
Acknowledgment
TheauthorswouldliketothankJohn
B.
Mulliken.
M.D.andthestaff
of
theCraniofacialCentre,Children'sHospitalfortheir
support
of
this project.Thecontributions
of
SarahBynumand Melissa
Brodieare appreciated.
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MATTHEW
L
SPELTZ,
PH.D.
KATHI MORTON, PH.D.
ELIZABETH
W
GOODELL,
PH.D.
STERLING K. CLARREN,
M.D.
Twenty-three mothers and their 5- to 7-year-old children with craniofacial
anomalies
(CFA)
who were assessed during the child s infancy were followed.
Three types
of
CFA were Included:
cleft
lip and palate (CLP), isolated cleft
palate (CP). and sagittal synostosis. Measures
of
child status focused on
behaylor-problem frequency and self-concept. Moth9rs completed self-re
port
measures of emotional well-being, marital satisfaction, and social sup
port. Results Indicated that (1) a sizable
minority
(18%) of the children with
CFA had clin icall y significant behavior-problem scores shown in concordant
repgrts by parent and teacher of behavior problems; (2) individual differences
in child func'lioning within the
CFA
group were predicted by observational
measures of earlier mother-infant interaction during play and teaching situ
,ations;
(3)
mothers of children with
CLP
reported less fayorable social
support than mothers of children wltb Cp
gf
sagittal synostosis
KEY WORDS:
craniofacial anomalies, infancy and early childhood,
psychological functioning
In a previous study (Speltz et aI., 1990) the maternal predictor variables examined in our study were based on
interactions and parenting characteristics affecting infants observational measur s
of
moth r-inf nt
and toddlers with craniofacial anomalies (CFA) were in- ing interactions. Such measures have been infreQuently
vestigated. The present paper will describe a follow-up
of
used in previous CFA
p s y h o l o ~ i l
research. despite their
the same children at ages 5 to 7 years. The objectives
of
widespread application in other areas
of
pediatric and de-
the follow-up were to determine the psychological status y"e]opmental psycholoiY (e.g., Barnard et aI., 1989)..
IhiI:d.
of
the children and their mothers at a later age and to the time period encompassed by the follow-up (infancy to
identify measures from infancy associated with later vari- the
child's
entO' into irade schoo]) is one jn whjch re]a
ation among the children. tively little is known about the development
of
children
Although small sample size and
a
high rate
of
control- with CFA, despi te the intensity
of
the medical care and
. group attrition were factors limiting the methods
of
this family emotional factors operative
durini
this period
follow-up, the data were collected for several reasons. (e.g., parental adjustment to the anomaly, surgeries, feed
First ,prev ious longitudinal research on the psychological ing and speech difficulties, early peer encounters).
development
of
CFA children and adolescents is almost The original sample studied by Speltz et
a1
(1990) com
nonexistent. There has been only one previous study
of
a prised infants and toddlers (ages 12 to 36 months), with
longitudinal nature to our knowledge (Allen et aI., 1990)
three
types
of repaired
anomalies
including clef