Craniofacial Anomalies: Psychological Perspectives

317 Pages·1995·7.248 MB·English

by  Ian R. Munro (auth.), Rebecca A. Eder (eds.)

Craniofacial Anomalies
Rebecca A. Eder
Editor
Craniofacial Anomalies
Psychological Perspectives
With a Foreword by Jeffrey L. Marsh, M.D.
With 30 Illustrations
Springer-Verlag
New York Berlin Heidelberg London Paris
Tokyo Hong Kong Barcelona Budapest
Rebecca A. Eder
Department of Psychology
St. Louis Children's Hospital
St. Louis, MO 63110, USA
and
Department of Psychology
Washington University
St. Louis, MO 63130, USA
Library of Congress Cataloging in Publication Data
Eder, Rebecca A.
Craniofacial anomalies: psychological perspectives/Rebecca A.
Eder.
p. cm.
Includes bibliographical references and index.
ISBN-13: 978-1-4612-7549-7 e-ISBN-13: 978-1-4612-2466-2
DOl: 10.1007/978-1-4612-2466-2
1. Face-Abnormalities. 2. Skull-Abnormalities. I. Title.
QM695.F32E34 1995
617.5'2043'019-dc20 93-31776
Printed on acid-free paper.
© 1995 Springer-Verlag New York, Inc.
Softcover reprint of the hardcover 1st edition 1995
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To Barbara
Foreword
The motivation for the first surgical reconstruction of a congenital facial
deformity is unknown. Ancient medical writings and Renaissance woodcuts
document attempts to repair cleft lip, the most frequently encountered
and necessarily recognized of the craniofacial anomalies. It is probable
that restoration of a "normal" appearance to destigmatize the affected
individual was at least one, if not the only, objective of surgical inter
vention. While the psychosocial consequences of craniofacial deformity
were and are appreciated by cultures less medically sophisticated than
ours, the physiological consequences of craniofacial anomalies have only
been defined over the past century. Emphasis on physiological rather than
psychosocial function tended to dominate the medical literature on cranio
facial anomalies from the mid-nineteenth to the mid-twentieth centuries.
This probably reflects both the development and popularization of sur
gery based on pathophysiology and the paucity of tools and investigators
for psychosocial research during that time period. The introduction of
general anesthesia, antisepsis, diagnostic medical imaging, antibiotics,
intravenous fluids, blood component therapy, and intensive care and
specialized surgical facilities, along with the reorganization of medical
education, have allowed surgery to be extended to every locus in the body
no matter how remote or seemingly dangerous. While operations upon the
face and skull allowed individuals affected with craniofacial anomalies to
breathe, eat, see, hear, and speak more normally, normal psychosocial
development and social integration did not necessarily follow. By the
1960s, some surgeons and pediatricians were questioning the efficacy of
certain operations for craniosynostosis, that is, premature fusion of
cranial sutures. It had been thought, for almost one hundred years, that
fused sutures needed to be surgically "released" to prevent increased
intracranial pressure, hydrocephalus, blindness, mental retardation, and
even death. On critical examination, there was minimal evidence to
support these assumptions. Reconstruction of craniofacial anomalies to
facilitate the affected individual's psychosocial development and social
integration had become an accepted indication for surgery by the 1970s.
Normalization of psychosocial development by normalization of cranio
facial appearance has remained both an important indication for and a
major objective of surgery over the past quarter century.
Although it seems intuitively obvious that facial deformity negatively
affects psychosocial development and that, conversely, surgical recon-
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viii Foreword
struction of the deformity will positively affect psychosocial development,
the validity of these assumptions is yet to be proven. Surgeons not only
accept "psychosocial benefit" as an indication for an operation but also
use similar reasoning to advise surgery prior to the individual's becoming
aware of the implications of facial deformity, even if additional surgery
will be necessary as the child grows. It is assumed that the psycho
logical morbidity of repetitive operations is less than that of unrecon
structed facial deformity throughout childhood followed by one operation
upon maturity, provided that .t he surgery effectively destigmatizes the
deformity.
What is the evidence to support these assumptions and medical
behavior? In this text, Eder has edited an outstanding collection of
contributions from leading authorities on craniofacial surgery and
psychosocial development in an attempt to document current under
standing and, more importantly, to provide stimulation and guidance for
necessary further research.
Part 1 addresses appearance, expression, and perception. Munro
provides a craniofacial surgeon's perspective regarding the methods
and rationale of reconstruction of craniofacial anomalies. He ques
tions: Whether craniofacial surgery avoids or diminishes psychosocial
problems? Whether multiple surgeries are preferable to one definitive
surgery with respect to psychosocial benefit? and How are the bio
logical versus psychological needs of an individual with a craniofacial
anomaly best met? His observation, that although the postoperative
appearance may be less disfiguring than that preoperatively it often
is not normal, raises the question of how much deviation from the norm
is compatible with normal psychosocial acceptance. Langlois addresses
three types of information which the facial appearance communicates
that regulate social behavior and interaction: age, gender, and affect.
She postulates that individuals with craniofacial anomalies appear older
than their chronological age or of ambiguous age and gender. This
confusion may yield misperception by others that results in inappropriate
expectations about and reactions toward the affected individual. Berry
introduces the concept of the event perception approach to facial percep
tion. This approach recognizes that in addition to nondynamic structural
characteristics, such as the anthropometric measurements recorded for
facial harmonics, the dynamic characteristics of motion (e.g., emotion)
and change (e.g., growth) affect facial perception. If alteration of
facial form, that is, nondynamic characteristics, is achieved at the ex
pense of diminution of expressive motion, one must ask whether the
alteration is cost/benefit effective. Shepard and Magai note that socio
emotional development contains both intra- and interpersonal aspects.
They discuss the important role of caregivers in the socialization of
emotional expression and in the affective, experiential development
Foreword ix
of their children. Furthermore in the context of infant-mother inter
action, there is a two-way street between infant and mother facial ex
pressivity. They question how the mother of an infant with limited or
idiosyncratic facial display learns to interpret that infant's emotions
and needs.
Attachment and parenting is the subject of Part 2. Field notes that
a preference for physical attractiveness produces differential expec
tations based on that physical attractiveness. These, in turn, may yield
differential behavior that is attractiveness driven. Unattractive children
have been observed to be less competent in social development than
physically attractive peers. With respect to infants with craniofacial
anomalies, they seem to be less active and less responsive than normal
infants. Similarly, their mothers seem less active and responsive than
those of the unaffected infants. The morbidity of these unresponsive early
interactions is unknown. Petersen, Pawl, and Lieberman further discuss
attachment in infants with disabilities. They note that the maternal
infant relation tends to focus on negative rather than positive aspects for
infants with craniofacial anomalies. The primary focus of studies of
maternal-infant relations changes from the infant in studies of normals
to the mother in studies of abnormal infants. Nonetheless no association
between parental responsiveness and the degree of disability in the child
has been shown: different forms and degrees of parental responsiveness
are the norm. Attachment in infants and preschoolers who require
hospitalization is discussed by Crowell, Waters, and Szanjnberg. They
note that attachment can be formalized into the child's ability to use the
parent as a base for exploration and a safe haven, as well as the child's
confidence in parental availability and responsiveness. Parents need
to be "present, predictable, and confident." Health care professionals
should evaluate and use the "parents' potential as collaborators in
treatment."
Eder introduces Part 3, which focuses on social cognition, self-concept,
and social interaction. She explores the emotional basis of self-under
standing to better understand development of the self-concepts of children
with cleft lip/palate. Examination of the literature presents contradictory
data as to whether being born with a cleft lip/palate results in adjustment
problems. Resolution of this inconsistency may reside in considering the
deformity in the context of the individual and family life cycles. Eder
postulates that the child's emotionality develops out of the interaction
between infant temperament, parental personality, and the caregiver
infant attachment. The effect or lack thereof of the cleft lip/palate on the
affected individual's emotionality and subsequent self-concept may relate
to whether or not one or more of these three variables is impacted as a
consequence of the cleft. In a pilot study of preschoolers with clefts, she
observed that both the affected children and their mothers rated them
x Foreword
higher on feelings of aggression and stress than their peers or their peers'
mothers. Rubin and Wilkinson explore peer rejection and social isolation
in childhood. They note that peer interaction is necessary for normal
social and emotional development. The pathway to rejection and isolation
may begin with the parent-infant interaction: if the parent withdraws
from the deformed infant, the infant will be stimulated less; the infant
then may respond less and in turn induce less response from the parent,
thereby perpetuating a vicious cycle that results in an insecure attachment
relationship. In older children, the peer response to craniofacial anomalies
may be bimodal: isolation may result from being ignored or excessive
attention may be drawn through teasing. Since the behavioral correlates
of unattractiveness and facial deformity seem to differ, research on
unattractiveness may not be relevant for craniofacial anomalies. Reis and
Hodgins conclude the discussions with concentration on the physical
attractiveness and stigma literatures. They raise the question of whether
beauty is a more positive attribute or ugliness a more negative one. They
note that the research on unattractiveness focuses on the effects of
physical attractiveness rather than those of unattractiveness. The impact
of stigmatizing deformity can be evaluated with respect to concealability,
course over time, disruptiveness, aesthetic factors, origin, and peril
posed to others. While unattractiveness seems to induce only negative
outcomes, facial disfigurement can have advantages as well as dis
advantages for the affected individual. Others tend to both help and
hinder stigmatized individuals to a degree greater than that for non
stigmatized persons.
In Part 4, authors Serofica, Tobiasen, Speltz, Galbreath, and Greenberg
discuss investigations into the psychosocial consequences of uncorrected
or incompletely corrected craniofacial deformity. Studies on this and of
the timing of such reconstructive surgery, and of effective reconstruction
are necessary to both validate, hopefully, the above-stated hypotheses,
upon which current management is predicated, and to better understand
the general issue of appearance and psychosocial function. Dr. Eder and
her colleagues report such investigations in this text. While more ques
tions are asked than answered, an excellent review of relevant attractive
ness, caregiver-infant bonding, socioemotional development, event
perception, and emotionality literature is provided for those unfamiliar
with it. General aspects of psychosocial development and deviations are
focused on data from studies of individuals with craniofacial anomalies
when such studies exist. More importantly, in my opinion, are the
recommendations of the various contributors for directions of further
research. Enough time has elapsed since the popularization of major
craniofacial reconstructive surgery that infants who received such opera
tions have grown into adults. The lack of adequate prospective studies
has limited the information that can be recovered from the experiences of
these individuals. The challenge to readers of this book is to design such
Foreword
Xl
studies so that the infants and young children who are operated on in the
near future may meaningfully contribute to our understanding of facial
deformity and its reconstruction in the not too distant morrow.
Jeffrey L. Marsh, M.D.
Professor of Surgery, Plastic
and Reconstructive
Associate Professor of Pediatrics
in Surgery (Plastic and Reconstructive)
Professor of Radiology, Division
of Radiology Research
Washington University School of
Medicine and Medical Director
Cleft Palate and Craniofacial
Deformities Institute
St. Louis Children's Hospital
St. Louis, MO 63110
Preface
Craniofacial anomalies (CFAs) represent one of the most commonly
occurring birth defects. Clefts of the lip and/or palate (CLP) alone occur
in approximately 1.5 out of every 1,000 births. The prevalence of all the
other anomalies is equal to or exceeds that of CLP (Day, 1985).
Recent diagnostic and surgical advances have resulted in substantial
changes in the medical treatment of persons with craniofacial anomalies.
However, relatively little has changed in the approach to psychological
issues associated with CFA s. The prevailing assumption on the part of
clinicians and researchers-that facial disfigurement must result in
psychological problems-has remained unchallenged for nearly half
a century (e.g., Macgregor, Abel, Byrt, Lauer, & Weissman, 1953;
Pruzinsky, 1990). This book was undertaken to advance our understanding
of the psychological impact of CFA s by reevaluating the prevailing view
in light of the most current perspectives and findings in developmental
psychology.
In a review of craniofacial birth defects, Day stated that, "Without
regard to its severity or rarity, each CFA takes on additional significance
because it affects the human face. No other portion of our body is
invested with so much meaning, recognition, and importance" (1985, p.
344). Reviews such as these often describe specific psychological problems
believed to be associated with these anomalies. For example, CFAs have
been speculated to be associated with problems in mother-infant bonding,
self-esteem, social acceptance, school performance and adjustment, and
adult mental heath (e.g., Day, 1985; Kapp-Simon, 1981; Pruzinsky,
1990).
There is a considerable discrepancy between the perceived impact of
CFA s on psychological functioning and conclusions derived from actual
empirical research. For example, persons with CFAs have not been found
to differ from the norm on measures of psychopathology (e.g., Richman
& Eliason, 1982; Williams, 1982). Furthermore, few reliable differences
are reported on measures of self-esteem and self-perception (e.g., Eder,
this volume). What accounts for this discrepancy?
Previous investigators have attributed the preponderance of non
significant results to the use of unreliable measures and/or to the lack of
appropriate control groups with which to compare individuals with CFA s
(e.g., Clifford, 1987; Tobiasen, 1984). For example, few of these studies
have systematically varied or examined the effect of degree of disfigure-
xiii