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What Are Some Psychosocial Implications of Congenital Craniofacial Anomalies?
What Are Some Psychosocial Implications of Congenital Craniofacial Anomalies?
Dedication
Thank you
Table of Contents
Page 1
Introduction
Page 2
Birth
Page 6 . Freud
Page 7
Hi story
Page 9
Teasing
Page 12
Speech
Page 15
Bi bl i ography
Final Page
Reasearch Outline
Introduction
The
Acquired
Unlike
Page-l
Rita's story
Rita begins,
When our
replied my obstetrician.
baby's face,
Page-2
and vanity.
the child.
including abandonment of
~ .~"
"'{:r>'
t!.- ~-
All of this ~-~~~
~~
d'\
~-~~~
1993) and
(January
in the study,
33
had cleft lip and/or palate, the other 44 had a more severe
deformity.
Page-3
children.
the contrary.
r :'-f~)
Vf
(J
yv.
f1N-~'
~ralization
.~
of findings.
In
Despite
problem scores;
SU~ t~
~ ~ tJA---'
Page-4
infant interaction;
Also, mothers
Page-5
Freudian Considerations
From a Freudian psychosexual developmental perspective,
cleft lip and palate offers some interesting considerations.
These considerations involve the first psychosexual stage,
the Oral Stage.
"According to the theory, from birth to age one, the
mouth, tongue, and gums are the focus of pleasurable
sensations in the baby's body, and feeding is the most
stimulating activity." (Berger, 1994)
Feeding an infant with cleft lip and palate presents a
challenging set of physical circumstances.
"Children with a
This is not a
Page-6
Historical Perspective
Dr. Benjamin M. Spock, in his latest book A Better
World For Our Children, provides a poignant example of the
negative attitudes confronting persons with congenital
deformities.
story told by his mother and the impact the remarks made on
him.
After
~conference
twelfth century is the first evidence for both cleft lip and
palate in British archaeology.
Page-7
The
the naughty packe, and was gotten with childe ... "
The
Page-8
"Teasing"
I'd like to begin this section with a brief quote from
the book "Beauty is the Beast, Appearance-Impared Children
in America", by Ann Hill Beuf.
Clearly
As Dr. McCurdy
Ma~regor
The
;vi.
~ l 'o~ )
act of objectification.
(Beuf).
(Beuf).
f;~m
Page-IO
In the
As an instrument of speech
Any
Examples cited by
Page-II
Speech
The psychological
The "Parent
Both
Results
Page-12
"From a psychological
It
Also presented
Page-13
These
Page-14
He had
Bibliography
1.
2.
"The Role of
3.
"Parent
4.
"Medieval
5.
Page-IS
6.
7.
8.
9.
Proceedings of the
10
11
12
Personal communication.
Page-16
13.
14.
15.
16.
17.
18.
19.
20.
21.
Page-17
22.
23.
1957.
Page-18
~aA
Submitted by:
Neil J. Gillespie
866-7400
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e/~rf
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56
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,
% ojSample
67
4
3
3
87
5
4
4
56
15
3
3
73
19
4
4
21
23
18
6
5
27
30
23
8
7
33
18
11
6
4
4
43
23
15
8
5
5
Maternal Adjustment
The Beck Depression Inventory (BDI) is a self-report mea
s~re 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-
57
58
TABLE 2
Measure
Mean
Maternal Adjustment
BDI
STAS
Maternal Perceptions
PSI Child Domin
PSI Parent Domain
Maternal Social Support
SSQ Family Support t
SSQ Friend Support t
SSQ Satisfaction
Medical Severity
Total Operations
Craniofacial Operations
Comorbid Medical Problem
HAY
Child Adjustment
CBCL
5.04
36.45
SD
5.00
7.88
24.30
151.56
6.40
39.82
2.59
1.18
5.21
1.53
1.00
1.09
3.45
2.60
1.71
3.75
2.77
2.37
0.69
1.82
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.
1.
2.
3.
4.
5.
6.
7.
PSI-C
PSI-P
SSQ-FA
SSQ-FR
SSQ-SA
STAS
BDI
1
PSI-C
2
PS!-P
.58'
-.27
-.11
-.23
.312 t
-.05
-.19
-.15
.30t
.44 t
.3~
Adjustment
3
SSQFA
SSQFR
5
SSQSA
-.05
.34 t
-.01
-.28
.26
-.14
-.14
-.10
-.10
6
STAS
7
BD!
.6~
*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 (SSQSA); STAS =Spielberger Trait Anxiety Scale;
BOI = Beck Depression Inventory.
'p < .01.
.p< .001
Perception
STAS
BDI
SSQFA
SSQFR
SSQSA
-.17
-.14
-.26
PS!-C
PSI-P
*STAS = Spielberger Trait Anxiet)' Scale: BDI = Beck Depression Inventory: SSQ =Social Sup
pon QUt'stionnaire - Revised Family (SSQ-FA). Fncnd(SSQ-FR). and Global Satisfaction (SSQ
SA): PSI = Parenting Suess Index. Child Domain (PSI-C) and Parent Domain (PSI-P): CBCL =
Child Behavior Checklts!.
'p < .001
Child Adjustment
Predictor
Variables
Maternal Perception
Maternal Adjustment
Medical Severity
Maternal Social Support
Correlation
with DV
Beta
.53'
.4 7'
.13
-.27
.35
.34
.18
'P< .001;
'Significant incremental change at p < .05 level.
-.06
Uniqul'
Contribution t
.087
.086'
.030
.003
59
60
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----_. .__
._---
--------------
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61
----I
/793
l/oL. 30 -#S-
pro Speltz, Dr. Morton, Dr. Goodell. and Dr. Clarren are all affiliated
l\'ith the University of Washington School of Medicine, Seattle,
Washington. .
f h
d
d
h 1991 B
. I
Sorne portions 0 t IS stu y were presente at t e
lennla
Meeting of the Society for Research in Child Development, Seattle,
Washington.
This research was supported by a grant from the National Institute of
Child H.ealth and Human Development (HD25987).
Submitted November 1992; Accepted May 1993.
Reprint requests: Matthew L. Speltz, Mailstop CL-08, University of
Washington, Seattle, WA 98195; mspeltz@u.washington.edu.
. . .
Measures
Predictor Variables from Time 1. For reasons noted
earlier, three dimensions of mother-infant/toddler interac
tion observed at time 1 were selected for study as potential
TABLE 1 Means of Subject Characteristics at Time 2
Clinic Subgroups
Clinic Comparison
=23 n = 10
METHOD
Subjects
Twenty-three of the original 33 mother-infant pairs with
CFA from the investigation by Speltz et aL (1990) (time
1) and 10 of the original 22 control group dyads from the
Gender (% m)
SES index
Two-parent
families t (%)
76
74
3.9
87
73
30
4.3
100
CP
n=7
CLP
n=9
SS
n=7
76
57
4.5
81
78
3.6
67
70
86
3.8
100
100
Hollingshead four-factor social strata ranging from 1 to S: (1) business and professional
to (S) unskilled labor.
tlncludes unmarried, in-home partnen.
Procedures
All subjects were seen at the Seattle Children's Hospital
, and Medical Center Craniofacial Program. Mothers were
interviewed and completed questionnaires while the chil
dren participated in the self-concept assessment. Two of
the children with CFA and one child in the control group
declined to participate in the self-concept procedure. The
families were debriefed and parents were later sent an
individualized summary of our assessment.
CBCL
TRF
SelfConcept
GWBS
DAS
CBCL
RESULTS
.53*
TRF
Self-concept
-.28
GWBS
-.32'
.11
DAS
-.28
-.31'
-.13
SNRDAT
-.20
-.04
-.18
.58*
AO
.31'
-.04
.08
.p < .01.
'p < .05.
'p < .10.
TABLE 3 CBCL and TRF Total, Externalizing, and Internalizing Scores by Group and Gender
Control Group
CFA Group
Boys
Girls
Boys
Girls
SD
SD
SD
SD
Total*
51.4
9.2
62.2
lOA
51.3
6.3
43.8
11.1
EXTt
51.5
9.8
60.8
9.0
50.0
8.6
42.8
8.5
INT'
50.1
9.1
59.7
12.4
49.7
1.1
42.3
11.2
Total
47.9
8.7
54.0
12.5
50.7
7.0
47.3
7.6
EXT
48.0
8.5
54.2
10.8
49.3
6.5
47.5
7.1
INT
50.9
9.1
51.2
11.8
55.7
3.0
50.8
6.4 '
CBCL
TRF
*CFA girls> CFA boys; F(1,22) = 5.6; P < .03. CFA girls> control girls; F(1,12) = 9.2; p < .02.
t CFA
Control Group
SD
SD
38.9
4.6
41.0
5.5
172.3
23.1
191.8
21.5*
31.2
2.2
33.0
1.3
Variable
Child
Self-concept
Mother
GWBS
DAS
SNRDAT
2.4
.24
2.4
.25
p < .05.
DISCUSSION
SS
CLP
CP
SD
SD
SD
CBCL
Total
EXT
INT
50.3
50.7
49.0
9.1
7.1
9.9
55.7
56.2
53.2
11.6
10.7
11.3
56.1
54.4
55.4
10.6
12.7
11.1
TRF
Total
EXT
INT
50.6
52.5
47.14
8.3
8.7
4.5
49.2
48.8
50.8
12.7
11.5
9.8
48.8
47.5
55.5
9.5
6.8
12.9
Self-concept
39.1
3.6
37.1
4.0
40.8
5.9
176.4
31.9
2.4
25.3
1.8
.21
175.1
30.1
2.2*
20.2
1.7
.27
164.4
31.6
2.5
25.7
2.8
.11
Child
Mother
GWBS
DAS
SNRDAT
ClP < CP and < 55; p < .05.
R2
Change
Variable
Change
r*
8.9 t
-.11
-.53
SES
CDP
.01
.36
.35
""'if'
I
2
SES
TEACH
.13
.49
.36
9.7 t
.36
-.55
'*
488
O'
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489
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October 1, 1992
By Lawrence Kutner
ALTHOUGH Ashleigh and Grace Anne Howe are 7-year-old identical twins, they've always looked
quite different from each other. Grace Anne was born with several congenital defects. The bones on
the left side of her face didn't form completely. She was born with a cleft palate and without a left
ear. Despite seven reconstructive operations, she still doesn't look like her sister or her classmates.
"No child has ever been nasty to Grace Anne because she looks different," said Dawn Howe, the
girls' mother, who lives in Quantico, Va. She admits that her daughter is often stared at by children
who don't know her. Adults will sometimes say things that are insensitive and ignorant; a man
recently asked if the girls' dance teacher would allow Grace Anne on stage during a class recital. Ms.
Howe told the man that there was nothing wrong with her daughter's legs.
A growing number of children are surviving accidents, illnesses and congenital defects that a few
decades ago would have been fatal and that today leave them looking different from other children
their age. That means that most children at some point will have a classmate who's been badly
burned, is bald from cancer chemotherapy, is missing parts of the body or is disfigured in some
other way. How children respond to a child who looks different is largely a function of their age, the
type of disfigurement and how the adults around them react.
Infants and toddlers seem to take physical differences among their playmates in stride. Scars or a
wheelchair may be curiosities but are not viewed as things to be feared or to become upset about.
"There may be an initial unwarranted fear of contagion among some preschoolers," said Dr. Stanley
D. Klein, a clinical psychologist in Boston and the publisher of Exceptional Parent magazine, which
is aimed at the parents of children with disabilities. For example, 4-year-old children may worry
that playing with a bald child might cause them to lose their own hair.
"But talking to them about what happened to that child helps their fear go away," Dr. Klein
continued. Children this age are uninhibitedly curious about people who look different. A 5-year-old
may wonder how a playmate who has a cleft palate brushes his teeth or whether burn scars are
painful.
Betsy Wilson, the director of Let's Face It, a national organization for people with facial deformities
and their families, which is based in Concord, Mass., lost her jaw to cancer 20 years ago and has
since had reconstructive surgery.
http://www.nytimes.com/1992/10/01/garden/parent-child.html?pagewanted=print
"Parents are embarrassed, but kids will ask me why my face looks funny," Ms. Wilson said. "I tell
them that I was very sick, that this is what the doctors did to make me better and that it isn't
painful. That honors their curiosity and doesn't tell them that it's bad."
Older children sometimes face more difficult problems with others' reactions. Jill Krementz, the
author of "How It Feels to Live With a Physical Disability" (1992, Simon & Schuster, $18), found
that while many of the disfigured children she interviewed received support from their peers, a few
were teased mercilessly or even attacked by schoolmates because of how they look.
"The only children who had a really painful time from their peers were the ones who had facial
disfigurements," Ms. Krementz said, adding that children who are missing limbs or have other
disabilities are more likely to receive comments on how well they are doing.
"But because the other kids don't know what to say and are fearful of saying the wrong thing, they
sometimes avoid the disabled kids altogether," she continued.
Since adolescence is a time when all children are more sensitive about how they look, it can be
particularly trying for children who are disfigured. They are bombarded by messages on television
and in magazines that equate physical beauty with success, popularity and attractiveness. They are
told (and believe) that even small defects, like a pimple, can lead to social rejection. They long
simply to blend in with their peers.
"One of the hardest parts of facial disfigurement is that you lose your anonymity," Ms. Wilson said.
"You have no control over people staring at you. We need, as parents, to get children to see the
person behind the face." Getting to Know the Child Behind the Face
IF your child looks different from his peers, there are some things you can do to help everyone in
the class or play group understand one another better. The first step is usually to meet with teachers
and administrators at your child's school to talk not only about your child's disabilities, if any, but
also about his strengths. Try to anticipate questions, and offer to provide information that will help
them appreciate your child for who he is.
"If the adults in the school community, including teachers, janitors and the principal, accept the
child, then it's easier for the children to do the same," said Dr. Stanley D. Klein, a clinical
psychologist in Boston and the publisher of Exceptional Parent magazine.
Here are some other things to keep in mind and to try:
Keep a photo album of your child, both alone and with friends and family members.
Start as soon as possible, rather than waiting for corrective surgery. "That tells him that the family
has accepted him from the time of birth and continues to accept him as changes occur," said Dr.
Kathy Kapp-Simon, a psychologist at the craniofacial center at the University of Illinois in Chicago.
"There wasn't a magic moment at which he became acceptable."
Prepare your child for some teasing.
http://www.nytimes.com/1992/10/01/garden/parent-child.html?pagewanted=print
Sometimes, teasing is an immature way for children to express their own discomfort and to try to
ask questions. Try rehearsing some answers your child might give if someone teases him about his
appearance.
"Try to have your child learn to stand up for himself without putting the other child down," said Dr.
Kapp-Simon. "Your child needs to hear you answering questions in the way you wish him to handle
them. If you're comfortable, then your child will also be comfortable."
Find a mentor for older children, especially adolescents.
These children need to know that they can be successful and happy as adults, even if they're having
some trouble now. Support groups often try to pair children with successful adults who have had the
same type of disfigurement. That often gives them a new and better perspective on their future.
Drawing.
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Parent &.Child
Lawrence Kutner
II
.e'
Stressing
strengths, not
disabilities.
Sometimes, teasing is an imma
ture way for children to express
their own discomfon and to try to
ask questions. Try rehearsing
some answers your child might
give if someone teases him about
his appearance.
"Try to have your child learn to
I-I
OCTOBER 7, 1990
,LIVING
:-.
4.
~~5
Facing up
to the problems
of disfigurement
ALLENTOWN, Pa.
W_oIf
~nterview.
by
isseDlioa."
\~professor
members. .
'.\
'\ .
- cleft palates, psoriasis and acne, fa
,': '~.
cial burns. obesity, and those who wear
"soda-pop-bottle-bottom glasses."
"America worships beauty," Beuf
says, and enormous sums of money are
spent in the quest for it. But "while few
, ..- Journal"Bul~t~n illustration by F:R~K GERARDI
.. , '/
can conform to the ultimate oeflnttion
i
of beauty as repre$ented by a handful
of mOdels and entertainment personal
And parents often resist
.
ities. It is more possible than ever for ances and peers, close friends or famtly
lutlons that would;'ease an appearance
ford to get disfigurements fiXed, she and sensitive to staring, la~ghing, the
The Insensitivity of physicians who
Disfigured
children
exrerience
episodes of I,:
rude behavior..
from everyo~e:
from total ',"
strangers to ,;';
family
of sociology at
I
College In Allentown, said
~
to an important patient
ppu
because of her close work
J{~
,A:
Ob~ ~