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Perceptions of stigmatization, attributional style and adjustment in adolescents with craniofacial conditions.

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Perceptions of stigmatization, attributional style and adjustment in adolescents with craniofacial conditions.
Creator:
Usitalo, Ann Marie
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Adolescents ( jstor )
Attribution theory ( jstor )
Child psychology ( jstor )
Parents ( jstor )
Self concept ( jstor )
Self esteem ( jstor )
Social psychology ( jstor )
Social skills ( jstor )
Stigma ( jstor )
Stigmatization ( jstor )
Craniofacial Abnormalities -- Adolescent ( mesh )
Craniofacial Abnormalities -- psychology ( mesh )
Department of Clinical and Health Psychology thesis Ph. D ( mesh )
Dissertations, Academic -- College of Health Professions -- Department of Clinical and Health Psychology -- UF ( mesh )
Research ( mesh )
Self Concept ( mesh )
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dictionary ( marcgt )
non-fiction ( marcgt )

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Thesis:
Thesis (Ph. D.)--University of Florida, 2002.
Bibliography:
Bibliography: leaves 169-188.
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Typescript.
General Note:
Vita.
Statement of Responsibility:
by Ann Marie Usitalo.

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PERCEPTIONS OF STIGMATIZATION, ATTRIBUTIONAL STYLE
AND ADJUSTMENT IN ADOLESCENTS WITH
CRANIOFACIAL CONDITIONS











By

ANN MARIE USITALO


A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL
OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT
OF THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY

UNIVERSITY OF FLORIDA

2002













ACKNOWLEDGMENTS

I would first and foremost like to thank the adolescents and parents who

participated in this study and who were the inspiration for it. My appreciation also goes

to the staffs of the University of Florida, the Nemours Children's Clinic, and All

Children's Hospital craniofacial clinics who allowed me access to their patients and who

helped me, in numerous ways, to collect the data for this study. Particular thanks are

given to Dr. John Nackashi, Ms. Virginia Dixon-Woods, and Ms. Teri Barcia at the

University of Florida; Dr. Peggy Greco, Ms. Joanne Denicola, and Ms. Kelly McDonell

at Nemours Children's Clinic; and, Dr. Mary Pavan, Dr. Michael Gallant, Dr. Ernesto

Ruas, Ms. Cathy Conley, and Ms. Betty Graves at All Children's Hospital. I would also

like to thank my committee, Drs. James Rodrigue, James Algina, James Shepperd, and

William Williams for their general support and specific contributions. Special thanks go

to my chairperson, Dr. Stephen Boggs, who introduced me to pediatric psychology and

served as a role model and very patient and knowledgeable mentor during my entire

graduate school career.

I also wish to acknowledge the extraordinary amount of help, love, and

encouragement I have received from family, friends, and teachers throughout this long

but ultimately rewarding process. I am especially thankful to my mother, Mabel Usitalo;

my late father, Richard Usitalo; and my sister, Susan Usitalo, for their affectionate

confidence and life-long support. Finally, I am more grateful than I can properly express

to my husband Paul Pitel and my children, Jonathan, Stephen, and Andrew for their love,








endless patience and encouragement, and for the many personal sacrifices they have

made on my behalf.














TABLE OF CONTENTS



ACKNOW LEDGMENTS...................................... ...............-.. .. ............... i

ABSTRACT......................... ......... ..... ......vi

CHAPTER

1 INTRODUCTION. ................ .... ............ ..................1

2 LITERATURE REVIEW.............................. .........................8

Appearance......................... ........ .... .. ... .. .......... ....... ........ 8
Stigmatization................ ....... ........... ............ ... ............ .23
Adjustm ent............ .......................... ............ ... ...............30
Self-Protective Strategies and Stigmatization.................... ............ .........43

3 SUMMARY AND OBJECTIVES.................... ....................... 53

4 M ETH OD S............................................... ............................. 59

Participants and Settings....... ... .. ....... ........ ...................... 59
M easures........... ... .............. .... .. ...........................................65
Procedure.... .................................... ... ...... ..... ..............72

5 RESULTS................................. ................ ..................75

Description of Sample Variables ......................................................... 75
Group Comparisons.............................. ............ ..................... 85
Intercorrelations of Variables.................................. ..... .........................87
Tests of the Hypotheses.......................................................94

6 DISCUSSION .................................... .......... ..... ................. 114

Perceptions of Stigmatization........................................... .................. 14
Attributional Style ................... ............... .... .................... .......... 120
Tests of the Hypotheses............................................... .................. 128
Limitations and Strengths of the Study..................................................151
Conclusion........................... .............................. .................153

iv









APPENDIX

A SOCIAL PERCEPTION QUESTIONNAIRE........................ ..................157

B PEER INTERACTION REPORT .......................................................159

C DEMOGRAPHIC QUESTIONNAIRE.................. ... ..................163

D SOCIAL PERCEPTION QUESTIONNAIRE (CHILD/ADOLESCENT VERSION)
ITEM RESULTS.....................................................165

E SOCIAL PERCEPTION QUESTIONNAIRE (PARENT/GUARDIAN VERSION)
ITEM RESULTS........ .................................................167

REFERENCES................................................169

BIOGRAPHICAL SKETCH.........................................................189













Abstract of Dissertation Presented to the Graduate School of the University of
Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy

PERCEPTIONS OF STIGMATIZATION, ATTRIBUTIONAL STYLE
AND ADJUSTMENT IN ADOLESCENTS WITH
CRANIOFACIAL CONDITIONS

By

Ann Marie Usitalo

May 2002

Chairperson: Stephen Boggs, Ph.D.
Major Department: Clinical and Health Psychology

This study investigated the relationships among demographic and condition

variables, perceptions of stigmatization, attributional style, self-concept, and social and

behavioral adjustment in adolescents with craniofacial conditions (CFC). Of particular

interest was whether attributional style acts to mediate the relationship between perceived

stigma and outcome variables.

Participants were 53 male and 30 female adolescent/parent dyads. Adolescents

were between 13 and 18 years of age with a visible, congenital facial difference (cleft lip,

cleft lip/palate, craniofacial syndrome, or other CFC such as hemangioma) and no

developmental delay or profound physical disability. Independent variables were age,

gender, number of functional impairments (hearing or speech problems, learning

disability), self-rated appearance (Self-Description Questionnaire-II/SDQ-II) and

perceived stigmatization. Outcome variables were self-concept (SDQ-II), social skills as

measured by the Social Skills Rating System (SSRS-Student), extent of peer network

vi








(Peer Interaction Record-PIR), and externalizing and internalizing behavioral problems

(SSRS-Parent).

Of the adolescents, 83% reported some experience of stigmatization in their social

interactions; parents' and adolescents' perceptions were significantly correlated but

adolescents reported significantly higher levels of stigmatization. Greater satisfaction

with physical appearance and more optimistic attributional style were significantly and

positively correlated with self-concept and social skills, and negatively correlated with

behavioral problems. Higher perceived stigmatization was negatively correlated with

self-concept and social skills and positively correlated with behavioral problems.

Demographic (age, gender, SES) and condition-related variables (diagnosis, number of

functional impairments) were generally not significantly predictive. However, learning

disabilities were associated with fewer social skills, more internalizing problems, and a

more pessimistic attributional style. Results show that a more positive attributional style

mediated the relationship between perceptions of stigmatization and social skills, self-

concept, and internalizing behavior problems; it had no effect on either extent of peer

network or externalizing behavior problems. Both practical and theoretical implications

of these results are addressed, as are directions for further research.













CHAPTER 1
INTRODUCTION

Craniofacial conditions represent one of the most commonly occurring birth

defects. Clefts of the lip and/or palate alone occur in approximately 1.5 out of 1,000

births and the prevalence of all other craniofacial conditions together equals or exceeds

that of cleft lip and/or palate (Eder, 1995). Craniofacial conditions are extremely

heterogeneous in terms of severity of facial deformity, associated features (e.g., problems

with speech and hearing, mental retardation), and complexity of treatment. Children with

craniofacial conditions and their families face an intricate set of challenges in coping

with the rigorous treatment demands and psychological sequelae of having an obvious,

chronic disability.

Immediately after the birth of a child with a craniofacial condition parents must

cope with their reaction to the facial disfigurement, increased care-giving demands (e.g.,

feeding problems), multiple diagnostic procedures, and the reaction of friends and family

to their child's appearance. Treatment may extend from infancy through late adolescence

or young adulthood and frequently involves numerous surgeries and hospitalizations,

extensive dental and orthodontic work, and therapy for speech and hearing impairments.

Although multidisciplinary diagnostic and treatment advances have led to significant

improvements in outcome, a child born with a craniofacial condition may have visible

scars and facial distortions throughout life; a "normal" appearance is often impossible to

achieve. Paradoxically, the advancements in plastic surgery and orthodontic techniques








used to correct not only major disfigurements but also common, minor deviations from an

"ideal" have likely led to a narrower definition of what is an acceptable appearance and

thus accentuated the facial differences of children with craniofacial conditions.

Given the nature of treatment for craniofacial conditions and the importance of

facial appearance in human interaction, it is not surprising that parents and professionals

are concerned about the impact of the condition on the child's or adolescent's

psychological well-being. Psychological issues associated with facial impairment have

been the focus of considerable study. However, the nature of the research, the questions

asked, and the methodologies used have shifted considerably over the years and parallel

the developments in pediatric psychology as a whole.

Much research has focused on comparing children with craniofacial conditions to

normal controls on various psychological measures and is based on the dual assumptions

that significant differences do exist, and that facially disfigured children will perform

more poorly and appear more pathological than would normal children. However, the

overwhelming conclusion from this body of research is that children with craniofacial

conditions, like other children with chronic and/or life threatening illnesses, do not differ

substantially from healthy children in terms of disease-specific personality patterns or

prevalence of severe emotional or adjustment disorders (Eder, 1995; LaGreca, 1990,

1992; Lavigne & Raier-Routman, 1992; Williamson, 1996).

Discrepant results have been obtained on dimensions such as self-concept or self-

esteem. Some studies have found diminished self-concept in children with craniofacial

conditions (Arndt, Travis, Lefebvre, Munro, & Niec, 1986; Broder, Smith & Strauss,

1994; Broder & Strauss, 1989; Kapp, 1979) while others have shown that they view






3

themselves in a positive light and score similarly to normal controls on most standardized

measures of self-concept or self-esteem (Kapp-Simon, Simon, & Kristovich, 1992; Eder,

1995; Leonard, Brust, Abrahams, & Sielaff, 1991; Williamson, 1996). The disparity in

results has been attributed to methodological problems such as small samples and

inadequate measures, or to differences in the samples or variables assessed (e.g., global

versus specific self-concept). Despite some negative findings, most children with

craniofacial conditions do quite well in the face of difficult life situations, and as Drotar

(1981) noted, the problems that do exist may often be interpreted as normal reactions to

real life stressors.

Chronic illness or disability does, however, function as a stressor that may, in

combination with other variables, contribute to increased risk for the development of

various problems. There is evidence that children and adolescents with craniofacial

conditions may be at higher risk for behavioral problems (Palkes, Marsh, & Talent, 1986;

Pertschuk & Whitaker, 1985; Schneiderman & Auer, 1984; Speltz, Morton, Goodell, &

Clarren, 1993), poorer school achievement (Brantley & Clifford, 1979; Richman, 1976;

Richman, Eliason, & Lindgren, 1988), and difficulties with social adjustment and peer

relations (Birch & Lindsay, 1971; Kapp-Simon, 1986; Pertschuk & Whitaker, 1985;

Pillemer & Cook, 1989; Pruzinsky, 1992). And, within the population of facially

disfigured children and adolescents, considerable variability exists in functioning, with

some individuals adjusting well and others adjusting poorly or inadequately. It is also

recognized that specific areas of functioning such as social adjustment and peer relations,

or developmental stages (e.g., adolescence) may prove especially problematic (Clifford &









Clifford, 1986; Kapp-Simon et. al., 1992; La Greca, 1990, 1992; Rubin & Wilkinson,

1995).

Research has thus turned to exploring sources of vulnerability and resistance in

children and their families, and to delineating factors that differentiate those who do well

from those who do not (Drotar, 1997; National Advisory Mental Health Council, 1996;

Wallander, 1993; Wallander & Thompson, 1995; Wallander, Vari, Babani, Banis, &

Wilcox, 1989). Efforts are being made to expand the scope of inquiry to include the

complex network of individual characteristics (Shepard & Magni, 1995; Speltz,

Galbreath, & Greenberg, 1995), family and peer relations, and environmental (e.g., SES)

and medical factors that structure the existence of a child with a craniofacial condition. A

more theoretically based orientation, using general frameworks such as the "risk and

resistance" model proposed by Wallander et al. (1989), and/or specific theories from

clinical, developmental, personality, and social psychology as heuristic devices has been

encouraged (Faier-Routman & Lavigne, 1992). However, most of the research to date

has rested, either implicitly or explicitly, on the assumption that a direct relationship

exists between facial disfigurement and psychological problems. Relatively little

attention has been paid to moderating and mediating factors or to theories that challenge

this basic assumption.

Problems in self-concept and adjustment in children with craniofacial conditions

have traditionally been attributed to their abnormal facial appearance and the stigma

associated with it. Treatment decisions regarding the timing and extent of surgical

corrections are often made based on beliefs about the effects of the child's appearance on

his or her adjustment. Indeed, abundant evidence exists that physical appearance affects








the way individuals are perceived and treated by others (for a review, see Eagly,

Ashmore, Makhijani, & Longo, 1991). Unattractive individuals are viewed more

negatively relative to attractive persons, most notably in terms of social desirability and

people's expectations and judgments about their traits and capacities. In fact, it has been

argued that appearance-based discrimination is severe enough to warrant protection under

handicap law (Harvard Law Review, 1987). But research also shows that unattractive

individuals are credited with many positive qualities, and variables such as familiarity

and similarity of interests may lessen the influence of the physical attractiveness

stereotype (Berscheid & Walster, 1974). These issues have not been explored in relation

to children with craniofacial conditions. Furthermore, as craniofacial disfigurement

typically involves more salient and significant disturbances of normal facial structure

than does ordinary "unattractiveness," at least until corrective surgery is performed, it is

not clear that findings from the literature on attractiveness are generalizable to this

population.

Theories as to the effect of social stigma on psychological adjustment have also

guided research in this area. Individuals with craniofacial conditions are, based on

appearance alone, generally considered to possess a "discredited" condition that is

stigmatized by society and thus seen by others as negative, unfavorable, or in some way

unacceptable (Crocker & Major, 1989; Harvard Law Review, 1987; Goffinan, 1963; Reis

& Hodgins, 1995). Several assertions are fundamental to stigma theory and the role

stigmatization plays in the development of problems among people with facial

disfigurements. First, if the world holds a negative view of a particular attribute, others

will respond unfavorably to the person who possesses that attribute. This social









disapproval is the hallmark of stigma. Second, the effects of such negative social

feedback about the self on the marked person lead to (a) the belief that the attribute

carries a stigma and is a negative characteristic to possess, and (b) diminished self-worth

and self-esteem.

Although traditional stigma theory assumes that social reactions to a discredited

attribute are almost universally negative, some evidence exists that people may react

positively or ambivalently to stigmatizing conditions associated with illness or handicap

as a result of societal pressure to be kind or helpful to those with disabilities (Bennett &

Stanton, 1993; Carver, Glass, & Katz, 1977; Katz, 1981; Weiner, Perry, & Magnusson,

1988). Thus, variations in social feedback might contribute to the development of higher

or lower levels of self-concept in individuals with craniofacial conditions. Unfortunately,

no one has addressed the range of reactions individuals with craniofacial conditions may

encounter. Likewise, although the relationship between perceived stigma and adjustment

has been studied in other chronic conditions (Arston, Droge, Norton & Murray, 1986;

Hermann, Whitman, Wyler, Anton, & Vanderzwagg, 1990; Ireys, Werthamer-Larsson,

Kolodner, & Gross, 1994; Ryan, Kempner, & Emlen, 1980; Westbrook, Bauman, &

Shinnar, 1992), no investigation has empirically examined perceptions of stigmatization

and the impact of such perceptions on the psychological health of facially disfigured

people.

In attempting to explain the ability of stigmatized individuals to maintain a

positive self-concept despite discrimination and diminished opportunities for success,

Crocker and Major (1989) described three self-protective strategies that are "afforded by

membership in a group that is stigmatized ... (a) attributing negative feedback to








prejudice against their group, (b) selectively comparing their outcomes with those of

members of their own group, and (c) selectively devaluing those attributes on which their

group typically fares poorly and valuing those attributes on which their group excels"

(p.612). Despite evidence that these self-protective strategies mitigate the effects of

discrimination and negative social reactions in other stigmatized groups, little is known

about their functioning among the group of individuals with craniofacial conditions.

Assessment of the effects of craniofacial conditions on the psychosocial

adjustment of children and adolescents is extremely difficult. As noted above, a number

of variables may contribute to increased risk or resilience in any individual, and the task

of understanding them and their interactions is daunting. However, it appears that

progress in this area has been hampered by an over-reliance on certain theories and would

benefit from a shift in approach. The research described here attempts to explore the

relationship between perceptions of stigmatization and the self-protective strategy of

attribution on the adjustment of adolescents with craniofacial conditions.













CHAPTER 2
LITERATURE REVIEW

"He had but one eye and the popular prejudice runs in favor of two"
--Charles Dickens, Nicholas Nickleby

Appearance

Concern about the role of facial disfigurement in the adjustment of children with

craniofacial conditions arises from a recognition of the social significance of facial

appearance and the strength of the physical attractiveness stereotype. Research on

appearance and its impact on everyday life has focused on examining the multitude of

inferential relations that exist between physical attractiveness and personal attributes, as

well as the treatment accorded both attractive and unattractive individuals.

Ratings of Attractiveness

The stability, reliability, and universality of attractiveness preferences is

remarkable. Children and adults from different cultures use comparable criteria in

evaluating facial attractiveness, very young infants can differentiate attractive from

unattractive faces, and an individual's perceived attractiveness remains stable over a

period of years. Research in this area refutes previously held assumptions that standards

of beauty are culture-bound and transmitted to children through a long process of

socialization.

Infants as young as 3 months of age can discriminate between attractive and

unattractive female faces and, in general, appear to prefer attractive to unattractive faces.

(Langlois et al., 1987). Subsequent research replicated this finding (Samuels,








Butterworth, Roberts, Graupner, & Hole, 1994), and extended it to demonstrate that

infant preferences for attractive faces generalize to adult Caucasian males, adult African-

American females, and other infants (Langlois, Ritter, Roggman, & Vaughn, 1991).

Other studies support an emotional "liking" versus simple visual preference interpretation

of the differential looking time infants showed toward attractive and unattractive faces

(Langlois, Roggman, & Rieser-Danner, 1990 as cited in Langlois, 1995).

Evidence also shows that a wide range of ethnic and cultural groups agree in their

judgments of facial attractiveness. High levels of agreement were found among African-

Americans, Hispanics, and Caucasians rating African-American, Hispanic, and Caucasian

infants and children whether they rated targets from their own or other groups (Kleck,

Richardson, & Ronald, 1974; Stephan & Langlois, 1984). Cross-cultural ratings of

attractiveness were also remarkably consistent, although not as highly reliable as those

obtained from individuals within the same culture (Langlois, 1995; Barden, 1990). The

high level of agreement across ages, ethnic groups, and cultures suggests that certain

structural features may be universally perceived as attractive. Cunningham (1986) found

that this is, indeed, true. He took precise measurements of 24 facial features from

photographs of 50 female faces and found that, although ethnic differences do exist,

African-American, Asian, and Caucasian faces judged to be attractive share many similar

structural features.

Significant agreement exists on ratings of attractiveness, and the reliability of

these ratings within cultures is extremely high. For example, Iliffe (1960) reported a

study in which attractiveness judgments were collected from more than 4,000 male and

female raters from 15 to 55 years old. Reliability coefficients were in the very high .90s






10

for raters of the same age and sex, and in the high .80s and low .90s for dissimilar raters

(e.g., teenage girls and middle-aged or older men).

Differential Perceptions and Treatment of Attractive and Unattractive Individuals

Substantial evidence from social and developmental psychology make it clear

that facial appearance exerts a marked and pervasive influence on judgments about and

reactions to others. Children and adults prefer attractive over unattractive individuals and

attribute more positive traits, behaviors, and skills to more attractive people (for reviews

see Berscheid & Walster, 1974; Bull & Rumsey, 1988).

Research with adult subjects

In their classic study on the physical attractiveness stereotype, Dion, Berscheid,

and Walster (1972) concluded that "what is beautiful is good." College students rated

facial photographs previously judged as low, medium, or high in physical attractiveness

on 27 different personality traits using a 6-point bipolar adjective scale. They also ranked

them on personality traits by indicating which stimulus person possessed "the most" and

"the least" of a given trait. Finally, the students were asked to decide which stimulus

persons were expected to lead better lives in terms of personal happiness and

occupational success. Physically attractive persons were ascribed more favorable

personality traits and successful life outcomes than were unattractive subjects with one

exception: attractive individuals were not expected to be better parents.

This paradigm has guided many subsequent investigations of the "beauty is good"

stereotype. Students' initial impressions and expectations of attractive and unattractive

professional counselors has been shown to conform to the physical attractiveness

stereotype (Cash, Begley, McGown, & Wise, 1975). College students asked to judge the








level of "psychological disturbance" in their peers from tapes constructed to reflect low

and high levels of maladjustment attributed greater disturbance and poorer prognosis to

unattractive than attractive individuals (Cash, Kehr, Ployson, & Freeman, 1977). And, in

a predictive study of the readjustment of discharged psychiatric patients, attractive

patients stayed outside of the hospital longer, and female patients judged as relatively

more attractive were viewed as better adjusted by a community informant (Farina, Bums,

Austad, Bugglin, & Fischer, 1986). Physical attractiveness was still significantly related

to days out of the hospital and the informant's rating of adjustment when age, education,

diagnosis, frequency of hospitalization, and predischarge adjustment were controlled.

Gross and Crofton (1977) tested and found support for a corollary to the physical

attractiveness stereotype. They asked college students to rate the attractiveness of photos

that were paired with either a favorable, average, or unfavorable personality description.

They concluded that, not only are attractive individuals assumed to have positive

qualities, but that individuals viewed as having positive qualities are judged as more

attractive and thus "what is good is beautiful."

Although the relationship between attractiveness and the attributions of positive

qualities is strong, evidence suggests that some negative attributes are also associated

with attractiveness. In Tanke's (1982) study, male freshman rated attractive female

students higher than unattractive ones on items measuring social and sexual excitement,

but unattractive females were rated higher on items measuring modesty, concern for

others, and interpersonal sensitivity. Both Dermer and Thiel (1975) and Cash and Janda

(1984) explored the negative side of the physical attractiveness stereotype. Their results

indicate that attractive people are perceived as more likely than unattractive people to








possess the negative attributes of vanity and selfishness. And, in a more recent study

(Agnew & Thomason, 1994) subjects were shown pictures of either an attractive or

unattractive man who was fictitiously described as having been diagnosed HIV-positive.

The attractive man was judged to be more to blame for his condition than was the

unattractive man.

Among adults, attractiveness influences one's desirability as a dating partner,

chance of employment, and even whether one will be convicted of a crime. In one study,

Walster, Aronson, Abrahams, and Rottman (1966) found that attractiveness was, by far,

the strongest predictor of liking among 376 randomly matched couples who evaluated

their blind dates at a college dance. It was also the strongest predictor of asking the

partner for another date, regardless of the attractiveness of the person doing the asking.

Intelligence and achievement were not significantly correlated with liking, and

personality variables were only weakly correlated.

Attractive individuals appear to maintain their advantage in social interactions

even when their attractiveness is hidden from their interaction partner (Goldman &

Lewis, 1977). College students engaged in a 5-minute telephone conversation with

opposite-sex partners whom they had never seen, and then rated their partner's social

skills and likeability. Even when their appearance was not visible, attractive individuals

received higher ratings of social skills and likeability. The authors suggested that

differential socialization, with attractive individuals having a history of more positive

attention and thus more opportunities to develop social skills, might account for the

results.








Research suggests that numerous other benefits may accrue to attractive

individuals: attractive defendants were less likely to be judged guilty and given milder

punishments than unattractive defendants in a simulated jury trial (Efran, 1974);

individuals were more likely to help an attractive than a unattractive person by mailing a

"lost" graduate school application with a photograph attached to it (Benson, Karabenick,

& Lerner, 1976) and to provide them with greater quantities of assistance (West &

Brown, 1975). In sum, attractive individuals are both perceived more favorably and are

likely to experience significantly more positive social interactions, at least on initial

encounter, than are unattractive individuals.

The enormous amount of research on the physical attractiveness stereotype led

Eagly et al. (1991) to conduct a meta-analysis of published results. They concluded that,

although subjects ascribed more favorable personality traits and more successful life

outcomes to attractive than unattractive targets, the average magnitude of effect was

moderate and the strength of the effect varied considerably from study to study. Physical

attractiveness had its greatest impact on attributions of social competence, an

intermediate impact on adjustment, potency, and intellectual competence, and little

impact on attributions of integrity and concern for others. Partial support for the

assertion of a "dark side" to physical attractiveness was obtained: attractive people are

perceived as more vain and less modest than unattractive people, but not more egotistical.

Feingold (1992) also analyzed research on the physical attractiveness stereotype

and obtained comparable results. Attractive people of both sexes are perceived as more

sociable, dominant, sexually warm, mentally healthy, socially skilled, and less modest

than unattractive persons, but not as possessing greater character. Neither meta-analysis








examined the effects of attractiveness on perceptions of individuals who are acquainted,

or included studies using children as either rater or target.

Thus the research on the physical attractiveness stereotype shows that attractive

individuals are perceived more favorably and are likely to experience significantly more

positive social interactions, at least upon initial encounter, than are unattractive

individuals. As more meaningful information about others may be difficult for

individuals to discover due to the mobility and anonymity of modem life, the

instantaneous effects of appearance may be greater than ever before. Initial impressions

have been shown to significantly affect the dynamics of subsequent interactions and

encounters (Bull & Rumsey, 1988).

Research with children as subjects

Children' and adolescents' physical attractiveness also affects how they are

perceived by others, the inferences made about their behavior, and their interactions with

other children and adults. Research shows that preschoolers and young elementary

school children hold the same behavioral stereotypes as adults do, and believe that

unattractive children are more likely to engage in troublesome behaviors than attractive

children. Langlois and Stephan (1977) found that 6- and 10-year-old children rated

attractive children, regardless of ethnic origin, as smarter, more likeable, and more

socially skilled. These results, together with those from Kleck et al. (1974) suggest that

physical attractiveness is extremely powerful in determining peer preference ratings and

behavioral expectations.

Most studies deal with initial judgments about others who are not known to the

subject and about whom little is known. However, evidence indicates that attractiveness








may be a powerful predictor of preference over a long period of time and not simply in

the initial stages of interaction. Dion and Berscheid (1974) showed that, even in

preschool, children choose attractive peers as friends over unattractive ones. In this

study, peer nominations on a number of variables were obtained for 77 preschool children

(ages 4-6) rated for attractiveness by adult judges. Attractive children received, in

general, higher popularity ratings and were perceived as more independent than were

unattractive children. Unattractive male children received more nominations for

aggressive behavior, and unattractive children of both sexes received more nominations

for being "scary" than did attractive children. This research suggests that similar

stereotypes of attractiveness exist for acquainted as well as unacquainted children, and

that appearance is associated with specific child character attributes as early as the

preschool years. Low to moderate correlations between physical attractiveness and

popularity were also reported by Kleck et al. (1974).

Vaughn and Langlois (1983) examined the relationship between attractiveness

and peer relation during the preschool years. Two sociometric ratings (popularity and

social competence) and one measure of attention received from classmates were obtained

for 59 children previously rated for attractiveness. The attention each child received was

not associated with attractiveness, but physical attractiveness and popularity were again

significantly related. These findings parallel those obtained from research with adults:

physically attractive individuals are generally preferred, appearance is most significant in

social interactions, and the positive valence associated with attractiveness spreads to

judgments of personal characteristics.








Differential treatment of attractive and unattractive children extends beyond peer

interactions to adult-child interactions. Infants and children who are attractive tend to

receive preferential treatment from adults. Pictures of attractive infants were looked at

significantly longer than were pictures of infants rated as unattractive (Hildebrandt &

Fitzgerald, 1978, 1981, as cited in Barden, 1990). Parke and Sawin (as cited in Tobiasen,

1984) found that normal 2-day-old infants and neonates perceived as attractive were held

and touched more than were unattractive newborns and neonates. Stephan and Langlois

(1984) found strong and consistent differences in behavioral expectations for attractive

and unattractive infants. Attractive infants were rated as more smart, likeable, and good;

less active; and causing fewer problems to their parents. Given these data, it is possible

that differential treatment of attractive and unattractive infants begins almost immediately

after birth.

In an early and influential study, Dion (1972) gave undergraduate women

photographs of attractive and unattractive children and a description of a misbehavior

attributed to the child. The undergraduates rated the misbehavior of unattractive children

more negatively than the same behavior by a more attractive child, and were more likely

to perceive it as being part of the child's personality style. In contrast, misbehavior by

attractive children was seen as an isolated incident. Unattractive children were also rated

as dishonest, unpleasant, and chronically antisocial compared with attractive children.

The preference for attractive children extends to nonsocial as well as social

situations. Clifford and Walster (1973) asked fifth grade teachers to rate unfamiliar

children on the basis of identical report cards, to which a small picture had been attached.

Attractive children were rated as having greater academic ability, having better social









relations and adjustment, and as more likely to become successful in life than unattractive

children.

Physically attractive children are generally favored over unattractive children in

terms of the discipline they receive (Dion, 1972,1974), grades on assignments and report

cards (Felson, 1980; Salvia, Algozzine, & Sheare, 1977), and expectations for academic

achievement and social success (Adams & Cohen, 1976). However, some discrepant

results have been obtained and interactions with gender and race have been noted

(Adams, 1978; Adams & LaVoie, 1974; Dion, 1974; Marwit, Marwit & Walker, 1978;

Rich, 1975). Although these conflicting results may be attributed to chance or variations

in methodology, it is likely that they reflect an interaction among appearance, the

attribute being evaluated, and personal characteristics of the child or observer.

Appearance affects inferences as to social competence significantly more than it affects

inferences about intellectual competence and integrity. The variations among studies

may also reflect the difficulty of reconciling competing stereotypes: the general

association between attractiveness and positive personal and interpersonal attributes, and

the specific association between intelligence and a relatively unattractive, studious

appearance.

Ratings of Attractiveness and Adjustment

Feingold's (1992) meta-analysis of the correlational research showed that physical

attractiveness was related to personality traits associated with social behavior such as

loneliness, social anxiety, and self-consciousness. It was not, however, related to the

personality traits of sociability, dominance, and mental health, or to the character-related

traits of self-absorption and manipulativeness. For example, one study found a








surprisingly weak relationship between attractiveness and self-esteem among adults:

highly attractive individuals discounted the validity of performance-related praise and

attributed positive evaluations to their attractiveness and not to their internal abilities or

qualities (Major, Carrington, & Camevale, 1984). Another interesting finding was that

self-rated physical attractiveness was more positively correlated to a wider range of

attributes than was other-rated physical attractiveness.

Self-rated attractiveness may be more important than other-rated attractiveness

among children as well. Kenealy, Frude, and Shaw (1989) examined the relationship

between attractiveness and psychosocial adjustment in 1018 children aged 11 to 12.

Attractiveness ratings were obtained from the child's teacher, a panel of judges, an

interviewer, and the child. The child also completed the Piers-Harris Self-Concept Scale

(Piers & Harris, 1984), behavior ratings were obtained from parents and teachers, and a

popularity score was derived from peer nominations in the child's classroom. There was

a strong positive relationship between self-rated attractiveness and self-concept, but a

weak or nonexistent relationship between child's self-esteem and attractiveness ratings by

teachers and judges. As teacher ratings of attractiveness were associated with positive

child attributes (e.g., popularity, confidence, leadership), these results suggest that

appearance as judged by others has an effect on children's behavior and popularity but

that self-esteem may be mostly associated with children's perceptions of their own

attractiveness.

Similar results were obtained among a sample of children and adolescents with

spina bifida (Appleton et al., 1994; Lefebvre & Munro, 1986). On the other hand, a study

by Cooper (1993) found that other-rated physical attractiveness had an effect on the self-








esteem of learning disabled children. Cumulative data suggest that appearance and self-

esteem are linked. However, the relationship is complicated and one's view of one's own

appearance is at least, if not more, important than ratings by other people. As one

researcher has noted, "perhaps Beauty lies in the eye of the Beheld as much as in the gaze

of the Beholder" (Lefebvre & Munro, 1986, p.60).

Appearance and Behavior

Approaching the question of differential treatment from another angle, several

researchers questioned whether unattractive individuals actually bchai e di ffercnil, froni

artrjtii\ e indii iduAk ilid thus elicit negative social responses. And, if so, is this because

there is a subtle and unidentified difference in biological or neurological functioning

among people with different levels of attractiveness or is it a reflection of different

socialization experiences, including the misinterpretation of others' behaviors?

Langlois and Downs (1979) observed peer interactions of 3- and 5-year-old

children who varied on ratings of attractiveness. They found few differences in affiliative

behaviors but observed an increase in hyperactivity among unattractive children. Most

interesting were their findings on aggression: no differences were found in 3-year-olds,

but 5-year-old unattractive children displayed more aggression toward their peers than

did attractive children. They hypothesized that age differences in levels of aggression are

attributable to the activation of self-fulfilling prophecies: unattractive children may be

negatively stereotyped and learn over time the behaviors associated with unattractiveness.

Kleck and Strenta (1980) designed two ingenious experiments in which subjects

were randomly assigned to one of three conditions: asthma, epilepsy, and facial

disfigurement. A large "scar" was applied to subjects in the facial disfigurement








condition using theatrical make-up. Under the guise of "conditioning" the scar to make it

more realistic, it was surreptitiously removed. Thus the subjects thought they had a facial

disfigurement when, in fact, there was no change in their appearance. After interacting

with another person, these subjects were asked to comment on those aspects of the other

person's behavior that appeared linked to their appearance. Subjects who thought they

were disfigured (but were not) perceived a strong reaction to their facial appearance in

the other person. The results suggest that an expectancy/perceptual bias mechanism may

influence the social behaviors of facially disfigured individuals. Thus differences in

behavior may result from individuals with craniofacial conditions molding their actions

to fit the negative stereotypes of others and/or changing their behavior to meet their

expectations about how others will act, and thus eliciting the behaviors they expected.

Facial Disfigurement, Behavior, and Social Interaction

An essential question, of course, is whether facially disfigured individuals elicit

the same judgments and social responses as do unattractive individuals. Although

researchers and clinicians have noted that patients complain of discrimination, teasing,

difficulties making friends, and problems in initial encounters with strangers (Bull &

Rumsey, 1988; Lefebvre & Munro, 1986; Pertschuk & Whitaker, 1984), little direct,

empirical evidence exists about the attitudes ofnondisabled children to their peers with

facial disfigurements. Most of the research with children is based on judgments of

drawings and pictures of children with cleft lip and/or palate that are assumed to be

generalizable to children with other craniofacial conditions. As many of the other

conditions involve greater disfigurement, research on children with cleft lip/palate may









underestimate the negative perceptions and interactions experienced by children with

more extensive disfigurement.

In a series of studies examining children's reactions to disabled or handicapped

peers, Richardson and colleagues (Richardson, 1970, 1971, 1983; Richardson & Royce,

1968) presented children the following pictures: (1) child with no disability, (2) child

with crutches and a brace on left leg, (3) child in a wheelchair, (4) child with left hand

missing, (5) child with facial disfigurement, (6) a child with obesity. The children were

then asked, "Who do you like best," and rankings of preference were obtained. Across

age and cultural groups, the rankings were remarkably consistent and clearly supported

Richardson's conclusion that nondisabled children preferred nondisabled peers. The

rankings were also consistent across studies, with the facially disfigured child

consistently ranked next to last, just above the child with obesity.

Recognizing that children respond to other children in a specific social context,

Harper and colleagues (Harper, 1995; Harper, Wacker, & Seaborg Cobb, 1986)

investigated the impact of situational characteristics upon rankings. They altered

Richardson's methodology slightly, presented different pictures, eliminated the picture of

the child without a hand, and placed questions of preference in the context of various

social and play situations (e.g., "Who would you like to go to a movie with?", "Who

would you like to ride a bike with?"). They found that rankings varied by type of

disability pictured, sample tested, and the type of activity specified. For example, a child

in a wheelchair was least likely to be chosen as someone to "ride a bike with." Children

in the United States uniformly demonstrated low preference for cosmetic disability (facial

disfigurement and obesity) versus orthopedic disability. This was not true for children








from different cultures (Middle East, North Africa, Asia). Children in less developed

countries, where greater emphasis is placed on functional survival, showed a low

preference for mobility impairments. In more developed countries, emphasis upon

thinness and appearance may contribute to the low preference for obese and facially

disfigured children.

When the rankings were summed over all conditions, school-aged children were

less likely to choose a child with a facial disfigurement as the preferred friend or

playmate than any other handicapped children. Harper and colleagues (1995) estimate

that less than 1% of the 1,000 children interviewed selected the child with the facial

disfigurement as most preferred. Their assessment of the attributions and reactions to

facial disfigurement what the participating children actually said about the various

conditions was revealing. They found that the children engaged in an "illogical spread"

of negative reactions, assuming that a problem in one area leads to deficiencies in other

areas (e.g., "can't play because of her mouth," "wouldn't know how to play the game").

They also noted that many of the children's comments expressed, quite directly, their

feelings about children with facial disfigurements (e.g., "awkward", "scared", "dirty") and

their perceptions about their appearance (e.g., "cat lips", "looks bad"). Harper interpreted

these results as indicating the magnitude of stigmatization associated with craniofacial

conditions and the potential difficulties in social interactions for children with

craniofacial conditions.

In other studies, ratings of facially disfigured children based upon photographs

have been obtained. Schneiderman and Harding (1984) asked grade school children to

rate color slides of children with normal facial features and those with repaired unilateral








and bilateral clefts of the lip. Photographs of children with clefts were rated more

negatively on several measures including boring, stupid, sad, dirty, mean, and bad.

Tobiasen (1987) used two versions of the same photographs. In one version, the child

was pictured with his/her cleft and in the other version the cleft was corrected. The

subjects' ratings of children with facial deformities were consistently negative, and

pictures of girls with facial deformities were judged more negatively than pictures of

boys.

Several researchers studied the effects of facial conditions upon teacher

expectations and employment opportunities. Richman (1978) showed that teachers

underestimated the intellectual ability of the cleft lip/palate children judged to have

severe facial disfigurement. Academic achievement in children with facial clefts and

normal intelligence is often lower than expected on standardized tests and on parents' and

teachers' reports (Brantley & Clifford, 1979; Tobiasen, 1984). Evidence exists for low

academic/intellectual self-concept as well (Broder & Strauss, 1989). Given Richman's

findings, it may be that many children with low academic achievement and self-concept

suffer from the self-fulfilling prophecy of low teacher expectations. Scheuerle, Guilford,

and Garcia (1982) found that employers responded negatively to an individual with a

cleft lip/palate. When a speech disorder was paired with the cleft lip/palate, the

negativity of judgments increased. The accumulated evidence suggests that facial

anomalies are a stigmatized condition: individuals with a craniofacial condition are

viewed more negatively by society and are likely to experience instances of prejudice and

discrimination.








Stigmatization

Introduction

Stigmatized individuals or groups are not defined by their possession of an

attribute that makes them different from others but by the devaluation society places on

the attribute and, by extension, on those who possess it. Numerous writers (Amtson et

al., 1986; Dell, 1986; Goffman, 1963) have emphasized the social nature of stigma that

it can be defined only in terms of a dynamic relationship between an individual and

society. An attribute becomes stigmatized when it interrupts the normal flow of

interaction and

... an individual who might have been received easily in ordinary
social intercourse possesses a trait that can obtrude itself upon attention
and turn those of us whom he meets away from him, breaking the claim
that his other attributes have on us (Goffman, p.5).

Goffman distinguishes between discredited and discredible conditions. A

discredited condition is one with visible cues while a discredible condition presents no

visible cues but, if it is revealed, the individual may be stigmatized. Epilepsy, mental

illness, and being HIV-positive are examples of the latter; facial disfigurement is a classic

example of the former.

Goffman (1963) argues that stigmatization requires the acceptance and

internalization of society's devaluation the stigmatized person must believe that he or

she has a discredible condition and feel some shame about possessing it. It is this last

proposition that implicitly fuels the extensive body of research on self-esteem and self-

concept in children and adolescents with craniofacial conditions, and the expectation that

society's negative views are incorporated into one's sense of self and self-worth.

Psychological, behavioral, and social problems may stem either from diminished self-








concept or self-esteem, or more directly from the accumulation of negative experiences

and limited opportunities.

Many researchers have tried to identify the variables most central to

understanding stigmatization. Hermann et al. (1990) noted that current conceptions have

dichotomized stigma into two types: enacted stigma, or actual instances of

discrimination; and felt stigma, or the perception that others, whether in direct or subtle

ways, devalue the person and/or express a reluctance to interact with them but do not

engage in explicit discriminatory behavior. Jones et al. (1984) outlined six dimensions

they believed most critical for understanding the impact of a given stigma on social

interactions. These are: (1) concealability; (2) pattern of change over time and ultimate

outcome; (3) disruptiveness, or the extent to which the stigma adds to the difficulty of the

interaction; (4) aesthetic factors, or how pleasing or distasteful the stigma is to the senses;

(5) origin of, or responsibility for, the condition; and (6) peril posed to others by the

condition. Stigma theory postulates that the greater the number and/or intensity of these

attributes in any given person or condition, the more potent the stigma associated with

them and the greater the risk for psychosocial difficulties.

Research discussed previously emphasized the negative judgments and

evaluations made of individuals with craniofacial conditions based upon photographs,

drawings, or videos. Additional evidence for stigmatization comes from studies of the

behaviors displayed toward those with facial disfigurements. Goffman (1963) noted that

avoidance, anxiety, uncertainty as to how to interact, and invasion of privacy by staring

and asking intrusive questions characterize encounters between stigmatized individuals

and the general public. In a series of encounters with 450 members of the general public,








Rumsey, Bull, and Gahagan (1982) found that people stood significantly further away

from a confederate in three disfigured conditions (facial birthmark, facial scarring, and

bruising consistent with a traffic accident) than in a nondisfigured condition. Subjects

also chose to stand significantly more often on the confederate's nondisfigured side (the

disfigurement only appeared on one side of the confederate's face). Finally, if facially

disfigured individuals attempted to engage others in brief encounters on the street, many

members of the public tried to avoid them by increasing their pace, averting their gaze,

and attempting to ignore their presence (Rumsey, as cited in Rumsey & Bull, 1986; Bull

& Rumsey, 1986). Other researchers have noted that members of the general public stare

quite openly at disfigured people (Macgregor, as cited in Bull & Rumsey, 1988).

Stigmatization in Epilepsy

There is a paucity of empirical research on the experience of stigmatization and

its perceived impact among individuals with craniofacial conditions. However, the

stigma associated with epilepsy has been investigated and the findings appear relevant to

understanding the experience of facially disfigured individuals. Although the two

conditions differ on one of the attributes (i.e., concealability), they are comparable on

most of the remaining. Individuals with epilepsy and craniofacial conditions are not

(usually) held responsible for their condition nor thought to present any risk to others.

Furthermore, the course over time, disruptiveness, and aesthetic factors vary considerably

within each condition.

Scrambler and Hopkins (as cited in West, 1986) examined the meaning of

epilepsy to people in terms of stigma, stigma strategies, stigmatization, and consequences

for identity. They studied 94 adults with epilepsy and found that only a minority recalled








any instances of stigmatization at all, a pattern contrasting markedly with the pervasive

sense of shame and fear of negative reaction that made up their sense of felt stigma. As a

result, the authors proposed that the lives of people with epilepsy are characterized less

by "enacted stigma" than by "felt stigma," a concomitant sense of shame about their

condition and a predisposition toward negative interpretations of other's behavior.

A more mixed view of the experiences associated with epilepsy emerges from

Schneider and Conrad's (1980) study. While some subjects reported a sense of shame,

stigmatization, and a concomitant desire to conceal their condition, others did not. Many

subjects were willing to selectively reveal they had epilepsy and noted that their

willingness to do so was related to what others, as "stigma coaches" had taught them to

do. In their work, Schneider and Conrad emphasized the role of parents as "stigma

coaches," noting that the greater the parents' sense of shame, the less likely their

offspring were to disclose any information.

Additional evidence that epilepsy is not invariably experienced as stigmatizing

was found in the Ryan et al. (1980) study of 445 individuals with epilepsy. Using a

quantifiable measure of perceived stigma they created, the investigators found

considerable variation in the amount of stigmatization experienced. In addition, the

finding that the relationship between seizure severity and perceptions of stigmatization

due to the disorder was mediated by other individual characteristics lent support to their

proposed sociopsychological model of stigma in epilepsy.

Two other studies empirically examined the role of perceived stigma and

psychological disturbance in individuals with epilepsy. In the first (Arnston et al., 1986),

perceived stigma was significantly and meaningfully correlated with attitudinal variables








(helplessness, self-esteem, and life satisfaction) and measures of psychopathology

(depression, anxiety, and somatic symptoms) in members of epilepsy organizations

throughout the country. Using both quantitative and qualitative measures, they

concluded that their respondent's social-psychological environment was more important

than the physical characteristics of seizure activity. Furthermore, actual seizure

frequency was less important to a person with epilepsy than the perception of how

severely the seizures affect one's life. Possible limitations of the study include a

nonrepresentative sample (all were active in epilepsy groups), the inability to infer

causality from the correlations (does the perceived stigma lead to psychopathology or

vice versa?), and inaccurate reporting of seizure rates.

Hermann et al. (1990) also found a relationship between self-reported feelings of

stigma and psychopathology. Of the seven variables they found predictive of

psychopathology, six were psychosocial in nature (perceived stigma, elevated number of

stressful life events, poor adjustment to epilepsy, financial stress, vocational problems,

and an external locus of control). Earlier onset of epilepsy was the only neurological

variable associated with psychopathology. Number, type, and duration of seizures were

not significant.

Despite observations (West, 1986) that the attitude of parents appears to be

crucially related to the extent of the child's "felt" stigma and the strategies adopted to

manage it, little research exists on families and stigma. West (1986) conducted a

qualitative inquiry of the relationship among parents' experience of "felt" stigma, the

strategies they adopted to manage it, and their effectiveness in helping their child achieve

a "normal" identity. Loosely structured interviews lasting between 2 and 4 hours were








administered to 20 families on at least two occasions over the course of about 1 year.

Due to the nature of the research and the small sample, the author presented only

tentative conclusions. Nonetheless, his findings concurred with those of other studies in

recognizing the importance of felt stigma in adjustment to epilepsy. The majority of

parents (15 of 20 cases) indicated a perception of felt stigma and engaged in various

information management strategies. In general, those who experienced stigma most

strongly were most likely to practice concealment and to maintain high levels of felt

stigma regardless of the success of concealment. Selective disclosure appeared to reduce

perceptions of felt stigma. Furthermore, those parents committed to a policy of

concealment minimized their children's participation in activities outside of the family.

As isolation and restriction of activities are not usually thought of as conducive to normal

development, West noted that the child with epilepsy may experience detrimental effects

as a direct result of the successful use of a strategy chosen for the very purpose of

avoiding negative outcome.

Westbrook et al. (1992) explicitly tested a conceptual model grounded in stigma

theory to investigate the association of stigma to self-esteem among adolescents with

epilepsy. The model hypothesized relationships among several characteristics of epilepsy

(seizure type, seizure frequency, and duration of epilepsy), perceived stigma,

management of disclosure, and self-esteem. Seizure type and frequency predicted low

self-esteem, as did the belief that epilepsy is stigmatizing. Younger subjects (12-16 years

old) had significantly higher stigma scores than did older subjects. However, most of the

subjects did not report feeling stigmatized by their condition. In explaining the negative

findings, the researchers noted that stigma theory does not clearly incorporate personal








subject characteristics such as personality traits, self-perceptions, cognitive evaluations,

or coping styles that may buffer or accentuate the effect of condition-related attributes on

perceived stigma and management of disclosure.

Stigma theory as traditionally formulated postulates strong and direct

relationships between variables: the greater the number and severity of stigma-related

dimensions, the more intense the stigmatization and negative its effects. However, the

accumulated epilepsy and appearance research suggests that the relationships are

complex and mediated by characteristics of the individual such as personality traits and

coping styles, the particular social situation, or the social group within which the

individual is acting. For example, Ireys et al. (1994) assessed how selected condition

characteristics (e.g., indices of severity, symptom predictability, prognosis, age of onset,

and visibility of condition) increased the risk of psychological symptoms in a sample of

286 young adults with chronic illness. They concluded that perceptions of impact

mediate the association between selected risk factors and mental health and should be

seen as a type of cognitive appraisal that shapes the relationship between condition

characteristics and mental health. Similar "self-protective strategies" are presumed to

mediate the association between stigmatization and self-concept in a variety of social

groups or categories of people.

As noted previously, no research has directly examined the subjective experiences

of individuals with craniofacial conditions with regard to perceptions of stigma. As a

result, stigmatization's effect on adjustment has generally been presumed to be negative

and direct with no mediating and few moderating variables (e.g., age and sex) blunting its

impact.








Adjustment

Findings from the literature on stigma and physical attractiveness have

contributed to concerns that children and adolescents with craniofacial conditions will

experience emotional and social dysfunction as well as poor self-concept. The prediction

ofpsychosocial difficulties was grounded in the application of social psychological

theories on prejudice, discrimination, and self-esteem to this population. For example,

the theory of "reflected appraisals" posits that children and adolescents with craniofacial

conditions are likely to incorporate society's negative view of individuals with facial

disfigurement into their self-concept. Research on self-fulfilling prophecies suggests that

mistaken beliefs about these children's capabilities would lead to expectations by others

of poor performance and differential behavior toward them. As a result, children with

craniofacial conditions would come to behave and view themselves in a manner

consistent with these negative stereotypes. Fears that discrimination would result in

limited opportunities for developing a sense of competence in many domains and

diminished efficacy based self-esteem added to apprehensions about the social and

psychological impact of craniofacial disfigurement.

Research on the adjustment of children and adolescents with craniofacial

conditions has concentrated on self-concept or self-perception, parent and teacher ratings

of behavior, and social adjustment. Parent and self-ratings of appearance and speech

have been used to assess both levels of satisfaction with treatment outcome and the

relationship, if any, between appearance and adjustment. Most studies have focused on

children and adolescents with cleft lip and/or palate as they comprise the vast majority of








patients with craniofacial conditions. It is not clear whether data gathered from children

with cleft lip and/or palate can be generalized to children with more severe conditions.

Self-concept

Self-concept, or the perceptions one has of oneself, exerts a profound influence on

behavior and much research has focused on understanding its development and

functioning. More complicated than it intuitively appears, self-concept includes both

global feelings of self-worth and judgements about oneself in specific domains such as

academic ability, social skills, and physical appearance (Bracken, 1992; Eder, Gerlach, &

Perlmutter, 1987; Harter, 1986; Marsh, 1986,1993). Thus, one may possess a relatively

high global self-concept and still evaluate oneself negatively on a particular dimension.

Self-esteem is often considered the evaluative component of one's self-concept, and self-

image, which comes from social interactions, is thought of as the internalization of others'

reactions to one's self and behavior. Self-concept, in all its manifestations, plays a critical

role in psychological functioning (Taylor & Brown, 1988) and adjustment, and concerns

about possible disturbances in self-concept among children with craniofacial conditions

have been prominent.

Overall, the research on self-concept has produced few significant differences

between children with craniofacial conditions and typical children, and remarkably little

evidence for diminished global self-concept. Kapp (1979) used the Piers-Harris Self-

Concept Scale (Piers & Harris, 1984) to measure the self-evaluations of 34 cleft lip

and/or palate adolescents (ages 11 to 13) with a matched normative group. No difference

in global self-concept (total scores) was obtained, although on specific subscales, girls








with clefts reported greater anxiousness and general unhappiness and dissatisfaction than

did same-sex controls.

Brantley and Clifford (1979) actually found that adolescents with cleft lip and/or

palate reported a higher level of self-esteem than did obese adolescents or adolescents

with no identified problems. They administered an extensive battery of behavioral

adjustment instruments to three groups of 10 to 18 year-old adolescents. Of 18 body-

image and 15 self-concept variables, significant group differences were found on only 2:

self-esteem and perceived acceptability by parents at birth. Adolescents with clefts

reported lowered perceived acceptability by parents at birth. There were no differences

among the groups on the body-image variables. The authors suggested that the

experience of coping successfully with a cleft and perceptions of unacceptability resulted

in heightened self-esteem in these subjects.

Adolescents with cleft lip and/or palate again scored at or above the norm for

global self-concept in another study (Leonard et al., 1991) using the Piers-Harris

Children's Self-Concept Scale. Further analysis showed an interaction between gender

and age: adolescent girls experienced a more negative self-concept in comparison to

younger girls and adolescent boys experienced higher self-concept compared to younger

boys. These results concurred with Brantley and Clifford's (1979) and Kapp's (1979)

findings of high overall self-concept combined with problems in specific domains or

among particular age-gender combinations.

The self-concept of children (8 to 11 years) was also found to be at or above

normal in the study by Leonard et al. (1991), a result discrepant from other studies. For

example, Kapp-Simon (1986) compared the self-concept of primary school-age children






34

(5 to 9 years) with clefts to a control group of nonaffected peers using the Primary Self-

Concept Inventory (PSCI) (Muller & Leonetti, 1974). The children with clefts reported a

lower global self-concept and perceived themselves as less socially adept and more

frequently sad and angry than their peers. However, although the differences in self-

concept score were significant, only 54% of the group with clefts scored in the "at risk"

range for global self-concept compared to the 74% classified as "at risk" on the social self

domain.

Broder and Strauss (1989) also used the Primary Self-Concept Inventory to

investigate the impact of visible versus invisible defects on children's self-concept. They

divided their sample of 6 to 9-year-old children into three groups -- cleft lip only, cleft lip

and palate, and cleft palate -- and compared their scores to those of peers with no

conditions. All groups with clefts scored significantly below the controls and in the "at

risk" range on the total self-concept score, both factors of the social domain, and the

physical factor of the personal self-domain.

Thus, while there is some inconsistency in results, one pervasive finding is that

global self-concept is marginally, if at all, affected by having a craniofacial condition.

However, specific domains of the self-concept appear vulnerable, and interactions of age

and gender may be significant. Some of the discrepancies can be attributed to the

differences in age groups and measures. The focus on either children or adolescents is a

significant strength as it acknowledges developmental differences in self-concept and

adjustment to facial disfigurement (Damon & Hart, 1982; Speltz, et.al., 1995; Speltz,

Greenberg, Endriga, & Galbreath, 1994).








Psychological and Behavioral Adjustment

Several studies have focused on parent and teacher reports of behavioral

adjustment (Richman, 1976; Schneiderman & Auer, 1984; Tobiasen & Hiebert, 1984). In

an early review of the literature on the intelligence, achievement, and psychological

adjustment of children with clefts of the lip and/or palate, Richman & Eliason (1982)

noted that research suggested that children with clefts were more inhibited than their

peers without clefts but displayed no evidence of significant psychopathology. Richman

(1976) gathered teacher Behavior Problem Checklist (BPC) reports for 44 children with

clefts and 44 matched controls ages 9 to 14. Children with clefts had significantly higher

scores on the internalizing scale of the BPC than controls, but did not differ on the

externalizing scales.

More introversion or internalizing behavior problems has been reported in other

studies as well (Pertschulk & Whitaker,1985; Pillemer & Cook, 1989). In a post-surgical

study of 25 children, Pillemer & Cook found significant problems with introversion and

peer relations. However, these problems emerged on projective measures only. Ratings

on objective measures were within normal limits. Pertschulk & Whitaker studied 43

craniofacial patients aged 6 to 13 years using a combination of standardized measures

and structured interviews. They found the patients to have poorer self-concept, greater

anxiety, and, as rated by parents and teachers, more negative social encounters and

problematic classroom behavior than matched control children. Emphasizing that the

children with craniofacial conditions were not functioning in a psychosocially deviant

range, the authors noted their results indicated limitations rather than marked deficits. No

consistent pattern of psychosocial problems was found within the whole group, and there








were no significant differences among children with different diagnoses. However, a

subset of patients with problematic responses showed a pattern of behavioral inhibition

and limited social contacts and/or frequent negative social encounters.

Schneiderman and Auer (1984) used both parent and teacher reports on the

Behavior Problem Checklist (BPC) to evaluate the adjustment of 58 children with cleft

lip and palate from preschool through grade nine. They found that very young children

of both sexes and girls in junior high school tended to be categorized as having

"personality problems," whereas elementary and junior high school boys were more

likely to be seen as having "conduct problems." Parents perceived more conduct

problems among males than did teachers. However, in Tobiasen and Hiebert's (1984)

study of 2 to 12-year-old children, parents of children with facial clefts reported the same

frequency of conduct problems as did parents of children without clefts.

Problems in family interactions, school productivity, and peer relationships were

also found in six often children (ages 5-15 years) with mixed craniofacial conditions

assessed by Palkes et al. (1986). This study explored the effects of the attitudes of

parents upon the child's well being. Parental attitudes toward their children were

favorable, and most expected their child to have positive self-esteem. Thus, the high

percentage of children with behavioral problems was startling and raised the possibility

that children with conditions other than clefts may differ in their adjustment. However,

the extremely small sample size prohibited any definitive conclusions.

As with self-concept, it is clear that children and adolescents with craniofacial

conditions do not display any single pattern of behavioral difficulties. The absence of

consistent group findings characterizing much of the literature has led some researchers








to investigate differences among children with facial disfigurements. Both

clinical/anecdotal (Pruzinsky, 1992; Tobiasen, 1995) and research (Birch & Lindsay,

1971; Clifford & Clifford, 1986; Pertschuk & Whitaker, 1984; Richman, Holmes, &

Eliason, 1985; Starr & Heiserman, 1977) data show that, within the craniofacial

population, some children and adolescents have poor adjustment, while others adapt quite

well to their condition.

Differences in Adjustment

Starr and Heiserman's research (1977) showed a relationship between acceptance

of disability and self-esteem (Linkowski, 1971) among adolescents with clefts of the lip

and/or palate. Those adolescents who indicated the highest level of acceptance on the

Scale to Measure Acceptance of Disability had higher self-esteem scores on the Self-

Esteem Scale (Simmons, Rosenberg, & Rosenberg, 1973) and scored significantly lower

on aggression, activity level, somatization, and sleep disturbance as measured by the

Missouri Children's Behavior Checklist (Sines, Pauker, & Sines, 1971). There was no

relationship between type of cleft and attitude toward their disability. The authors

concluded that complex psychosocial issues are more important than physical severity in

the acceptance of one's facial disfigurement, and that adolescents with difficulty

accepting their disability are at high risk for disturbances in behavior and self-concept

and may benefit from psychosocial interventions.

Perceptions of educational and social functioning among adolescents with cleft lip

and palate varied in accordance with their personality adjustment as measured by MMPI

scores (Richman, 1983). Significantly more adolescents with abnormal MMPIs felt

dissatisfied with their educational and social functioning than did those with normal






38

MMPIs. Groups of well and poorly adjusted adolescents with cleft lip and palate, based

on parent Behavior Problem Checklist (Quay & Peterson, 1969) ratings, were also

compared in the Richman et al. 1985 study. They examined the relationships among self-

ratings of facial appearance, teacher ratings of appearance, and parent and child ratings of

adjustment as measured by the BPC. While the ratings of adolescents in the well-adjusted

group agreed with those of parents and teachers, adolescents in the poorly adjusted group

agreed only with parental ratings on the conduct problems dimension of the BPC. They

rated themselves as having significantly fewer internalizing personality problems than

parents, and as significantly more attractive than teachers. The authors hypothesized that

poorly adjusted individuals use denial of facial disfigurement as a defense mechanism

and that their social withdrawal is a consequence of their denial. However, adolescent's

self-ratings on all three measures were not significantly different between the groups, and

those in the poorly adjusted group had more severe facial disfigurement. Thus, although

differences in adjustment exist, the relationship among severe facial disfigurement,

adjustment, introversion, and a greater use of denial remains ambiguous.

Effects of specific condition related variables (appearance, speech, hearing) on

adjustment have been explicitly examined in several studies. As noted above, some

researchers found no significant differences in adjustment among children with various

craniofacial malformations or levels of attractiveness (Kapp-Simon, 1986; Pertschuk &

Whitaker, 1985; Starr, 1980; Starr & Heiserman, 1977). Others have asserted that those

children with major deformities (not just cleft lip and/or palate) or who are less attractive

do more poorly (Pillemer & Cook, 1989; Pruzinsky, 1992; Richman, et al., 1985).

Padwa, Evans, & Pillemar (1991) examined the effect of symmetric and asymmetric








(hemifacial microsomia, facial asymmetry, unilateral coronal orbital synostosis, and

hemihypertrophy) craniofacial deformities and functional impairments (hearing and

speech problems) on measures of depression, social/emotional development, and

behavior. Those with symmetric deformities scored significantly poorer on all measures

of adjustment, but differences among the groups with or without functional impairments

were not significant. Williamson (1996) also found that speech, hearing, and level of

attractiveness were not related to behavior problems or self-esteem. These results were

somewhat surprising given evidence that speech and hearing problems can also have a

negative influence on adjustment (reviewed in Williams, 1996) and assumptions about

the additive effects of having both functional and visible impairments.

Appearance and Adjustment

Although the relationship between severity of facial disfigurement or level of

attractiveness and adjustment is not clear, both patients and professionals remain

concerned about facial appearance (Broder, Smith, &Strauss, 1992; Strauss, Broder,

Helms, 1988; Noar, 1991) and many surgeries are performed for cosmetic reasons alone.

Pre-and postoperative comparisons of facial appearance and adjustment have generally

shown that patients perceive improvement in both areas. In one study (Lefebvre &

Barclay, 1982), a large percentage of patients reported better psychosocial adjustment

after surgery to improve their appearance, suggesting that improved appearance may have

had a beneficial effect. Amdt et al. (1986) found that patients rated their appearance,

self-esteem, and social acceptance and adeptness as noticeably improved after surgery.

As independent raters observed only relatively subtle changes in appearance, the authors

surmised that the patients' improved self-evaluations increased their level of social








comfort and thus enhanced their quality of life. Similar results were reported by

Tobiasen and Hiebert (1993) in their study of children and adolescents with facial clefts:

self-ratings, not peer ratings, of severity of impairment strongly predicted positive

psychosocial adjustment in several areas including global self-esteem, positive mood, and

social competence. When evaluating changes in appearance, it is important to remember

that impressions of individuals are formed by factors other than physical attractiveness

including vocal qualities, gesturing, and other social skills (Canady, 1995). Furthermore,

patients' judgments of outcome appear to depend as much on their expectations as on any

objective criteria.

Social Adjustment and Peer Interactions

Healthy social interactions are essential to good adjustment and satisfaction with

one's life. Several retrospective studies (Birch & Lindsay, 1971; Bjornsson &

Agustsdottir, 1987; Heller et al., 1981) of long-term adjustment in patients treated for

craniofacial conditions noted specific problems in adult social functioning. For example,

Heller, Tidmarsh and Pless (1981) studied 96 young adults (ages 18 to 28) born with

clefts and 56% of all respondents expressed some degree of dissatisfaction with their

social interactions, social activities, and number of friends. As patterns of social

interaction are known to begin early in life and remain relatively stable (Rubin &

Wilkinson, 1995), concerns about social and peer adjustment of children and adolescents

with craniofacial conditions are expressed in almost every paper written. Unfortunately,

one consistent finding is that the probability of problems in social and peer functioning is

quite high, and the internalizing behavioral problems often associated with facial

disfigurements include many that are social in nature: shyness, anxiety, hypersensitivity,






41

self-consciousness, social inhibition, and negative self-perception (Bull & Rumsey, 1986;

Kapp-Simon et al., 1992: Rubin & Wilkinson, 1995; Tobiasen, 1995; Tobiasen &

Hiebert, 1993).

Problematic social interactions are emblematic of stigmatization. Goffman (1963)

noted that the stigmatized can never be certain about how they will be received and thus

may avoid contact with nonstigmatized individuals. However, a desire for social

interaction may remain, and this desire is what distinguishes social withdrawal or

avoidance and dysfunctional shyness from the personality dimension of introversion

(Cheek & Melchior, 1990). And, as Rubin and Wilkinson (1995) noted, the social

withdrawal and anxiety that may predict peer rejection for craniofacial, handicapped and

other stigmatized children is different from the aggression that is associated with

rejection for unattractive children.

The social experiences of individuals with craniofacial conditions may be

organized into the three components of affect, cognition, and observable behavior.

Affective and cognitive dimensions include the symptoms noted above: anxiety, self-

deprecating thoughts, self-consciousness, and hypersensitivity to evaluation. Direct

observational data (McGuire, Kapp-Simon, & Simon as cited in Kapp-Simon, 1995) and

secondary reports (Rumsey as cited in Bull & Rumsey, 1986) have identified several

behaviors common to individuals with craniofacial conditions. These include infrequent

eye contact, a more monotonous tone of voice, slouched posture, fewer attempts at

initiating conversations with others, and less effective approach behaviors. As a result,

increasing attention has been paid to the importance of identifying the social skills of






42

individuals with craniofacial conditions and working to increase their social competence

(Bull & Rumsey, 1986; Kapp-Simon, 1995; Tobiasen, 1995).

Noting that the relationships among self-concept, social skills, inhibition, and

adjustment in children with craniofacial conditions had never been explicitly examined,

Kapp-Simon and colleagues (1992) conducted such a study with 45 young adolescents.

They concluded that children with craniofacial conditions appear at risk for psychological

adjustment problems but not for poor self-concept, and suggested that self-concept scores

may not be the best indicators of overall psychological functioning. Adolescents in the

study scored in the normal range on self-perception, social skills, and inhibition, but 1.5

SD below the average on a measure of adjustment. Regression analyses were conducted.

Social skills were the primary predictor variable and, together with athletic competence,

accounted for 73.5% of the variance in adjustment. According to the authors, these

results suggest that adjustment in children with craniofacial conditions is related to social

skills and social behaviors rather than feelings about appearance, school performance, or

even their own sense of self-worth. However, other researchers have found that self-

perceptions, particularly of appearance, play an important role in psychosocial

functioning and continue to emphasize the need to understand both maladaptive

cognitions and coping styles in addition to behavioral deficits (Richman, 1983; Richman

et al.,1985; Tobiasen & Hiebert, 1993).

Research on the adjustment of children and adolescents with craniofacial

conditions is often confusing and inconsistent due to disparities in variables measured,

instruments used, and age and gender differences among subjects. However, several

patterns have emerged. As a group, children with craniofacial conditions are well








functioning and not appreciably different from their nonaffected peers. Specific

problems have been noted in subgroups of children and areas of functioning, for example,

social and peer interactions, school achievement, a tendency toward internalizing

behavior problems, and diminished self-concept in the social and physical attractiveness

domains. However, global self-concept is usually comparable to, or only slightly lower

than, that of nonaffected peers. Given the expectations of poor adjustment derived from

literature on the physical attractiveness stereotype and stigmatization combined with

social psychological theories on the development of self-esteem, the generally high level

of functioning is somewhat surprising. Although the need for increased knowledge has

been emphasized (Bull & Rumsey, 1986; Pruzinsky, 1992; Rubin & Wilkinson, 1995;

Tobiasen, 1995), little is known about specific risk and resiliency factors, including the

possible use of "self-protective strategies" in lessening the impact of negative stereotypes

and instances of prejudice or discrimination.

Self-Protective Strategies and Stigmatization

A significant body of research over many years has led to the rather surprising

conclusion that prejudice against members of stigmatized or oppressed groups generally

does not result in lowered self-esteem for members of the group. Without denying that

prejudice and discrimination may be harmful in other ways, Crocker and Major (1989)

proposed that three mechanisms, or "self-protective strategies," mediate the association

between stigmatization and global self-esteem among members of discredited groups.

Although the relationship has not been studied, it is possible that these strategies also

help buffer the self-esteem and self-concept of children and adolescents with craniofacial

conditions from the effects of negative perceptions and treatment by others. Furthermore,








differential use of these strategies may contribute to the observed variability in

psychosocial functioning among these children and adolescents.

Two of the self-protective strategies or mechanisms outlined by Crocker and

Major (1989) are those of"ingroup comparisons" and "selective devaluation." As

members of stigmatized groups are often disadvantaged on numerous dimensions,

comparing oneself to similarly stigmatized others ingroupup comparison") rather than to

members of advantaged groups may protect one's self-esteem. Ingroup comparisons are

often forced on stigmatized individuals as a result of segregated environments but may

occur because people tend to compare themselves to others who are similar to them on

important dimensions. The wish to enhance self-esteem by comparisons with alike or

even less fortunate individuals may also motivate ingroup comparisons. The importance

of reference groups has been shown in assessing children's self-concept in academic

settings (Harter, 1986; Marsh & Parker, 1984) and in the maintenance of self-esteem

among women with breast cancer (Taylor, 1983; Taylor, Wood, & Lichtman, 1983).

Researchers have also shown that both self-esteem and affective state are related to

beliefs about how one's abilities and attributes compare with those of others (Crocker,

Alloy, & Kayne, 1988; Tabachnik, Crocker, & Alloy, 1983).

Selective devaluation, or regarding as less important to one's self-concept those

dimensions on which one does poorly and valuing those on which one or one's group

excels, may also serve to protect the self-esteem of stigmatized individuals. Since

William James (1890/1981), the idea that it is necessary to know whether an individual

values a quality in order to know whether that individual's self-esteem will suffer as a

result of deficiencies in that quality has guided thinking about the self-concept and the








preservation of self-esteem. Harter (1986) showed that self-esteem was linked to

children's abilities to discount areas in which they were not competent. As it may be

difficult to completely discount the importance of certain attributes in a given culture or

sub-culture (e.g., appearance or academic success in the United States today), one self-

protective strategy used by members of disadvantaged groups may consist of relatively

overvaluing those attributes or domains in which they excel rather than devaluing those

in which the dominant group excels.

Attributing negative feedback or relatively poor outcomes to prejudice against

one's group is the third self-protective strategy suggested by Crocker and Major (1989). It

is also the focus of this research. For example, if an individual with a craniofacial

condition is not invited to party or fails to get a job, he or she may be uncertain whether

the negative outcome is due to actual personal inadequacies or because the other person is

prejudiced. This uncertainty, a characteristic reaction of stigmatized individuals

(Crocker, Voelkl, Testa, & Major, 1991; Goffman, 1963), allows one to attribute

rejection to external causes such as prejudice rather than to personal deficiencies even if

no prejudice exists, and thus preserve one's self-esteem.

The idea that people seek causal explanations for events, particularly those that

are negative, unexpected, or important, and that one's thoughts or perceptions about the

causes of events has affective and behavioral consequences is central to attribution theory

and the focus of much theoretical and clinical research (Abramson, Seligman, &

Teasdale, 1978; McFarland & Ross, 1982; Metalsky & Abramson, 1981; Schoenherr,

Brown, Baldwin, & Kaslow, 1992; Weiner, 1988; Weiner et al., 1988). For example,

according to both the reformulated account of learned helplessness (Abramson et al.,








1978) and the hopelessness theory of depression (Abramson, Metalsky, & Alloy, 1988;

Abramson, Metalsky, & Alloy, 1989), the causal attributions people make for

uncontrollable events they experience influences their helplessness and hopelessness,

self-esteem, and level of depression. Weiner, another prominent attributional theorist,

places attributions at the center of his theory of motivation and emotion in both

achievement and affiliative domains (Weiner, 1986; Weiner, 1988).

Considerable evidence from the attributional theory literature indicates that

making external attributions for negative events bolsters self-esteem, and, conversely,

attributing negative outcomes or feedback to internal causes (i.e., lack of ability or being

overweight) leads to lower self-esteem among individuals and groups (Bradley, 1978;

Crocker, Comwell, & Major, 1993; Ickes, 1988; Tennen & Herzberger, 1987). A

tendency to blame others for negative outcomes, whether justified or not, has been

observed among stigmatized groups, including those with craniofacial conditions (Bull &

Rumsey, 1986; Crocker & Major, 1989; Goffman, 1963; MacGregor, Abel, Bryt, Lauer,

& Weissman, 1953). The danger, of course, to this approach is that externalizing

responsibility for poor outcomes may protect self-esteem in the short-term but have long-

term negative effects if it prevents one from making necessary changes.

In addition to mediating self-esteem, causal attributions may mediate the affective

and behavioral responses to positive and negative outcomes among both children and

adults. Attention has been paid to the role of attributions in fostering depression, social

anxiety, and loneliness, and their influence on perceptions of social competence and

achievement motivation (Crocker et al., 1993; Dweck & Goetz, 1978; McFarland &

Ross, 1982; Michela, Peplau, & Weeks, 1982; Mikulincer, 1988; Seligman et al., 1984;






47

Sobol & Earn, 1985; Tennen & Herzberger, 1987; Weiner, 1988; Vaux, 1988). Much of

the research in this area has, in fact, focused on the role of causal explanations in the

development of the same social and internalizing behavior problems associated with

having a craniofacial condition.

Individuals are considered to exhibit a particular attributional style to the extent

that they make similar attributions for different events. Several researchers (Ickes, 1988;

Ickes & Layden, 1978; Metalsky & Abramson, 1981; Weiner, 1986) have asserted that

certain characteristic styles of attribution may predispose an individual to psychological

difficulties. Factors such as utilization of situational information, strength of attributions,

and differentiation of causal explanations across events and time contribute to the

enormous variability in attributional style among and within people. While

acknowledging the importance of situational effects, the trait aspects of attributional style

are the primary focus here, and an understanding of differences in attributional styles

requires consideration of the dimensions usually associated with causal explanations:

internal-external, stable-unstable, controllability-uncontrollability, and global-specific.

Although essentially similar, Metalsky and Abramson's (1981) and Weiner's

(1986) attributional style theories differ in their views about the controllability and

globality dimensions. Metalsky and Abramson, for example, maintain that people who

tend to attribute bad outcomes to internal, stable and global factors and good outcomes to

external factors such as "good luck" have a negative attributional style and should be

most prone to depression and low self-esteem. Those with positive attributional style

generally attribute good outcomes to internal factors and bad outcomes to external

factors. Although he substitutes controllability for globality, Weiner also postulates








fundamental differences between individuals with negative and positive attributional

styles in achievement and affiliative domains. As noted previously, evidence suggests

that external attributions for negative events are linked to high self-esteem and, like

overly positive self-evaluations, may actually promote mental health (Taylor & Brown,

1988).

The hypothesis that attributions mediate affective and behavioral reactions to

positive and negative outcomes is consistent with empirical evidence on self-esteem and

psychological well being in both adults and children. In a series of studies, Ickes and

Layden (1978; Ickes, 1988) explored the interrelation among attributional style, self-

esteem, and sex. For negative outcomes, low self-esteem participants made internal

attributions while high self-esteem participants made external attributions. The reverse

was true for positive outcomes. Regarding sex differences, they found that irrespective

of self-esteem level, males tended to attribute failure to external factors and success to

internal factors while females did the opposite. A separate study examined the

relationship between ability attributions and self-conceptions and found that attributing

negative outcomes to a lack of ability was positively associated with depression (Ickes,

1988). Individual differences in self-esteem and affective states have also been linked to

attributional differences in other studies. Tennen and Herzberger (1987) found that

higher self-esteem subjects attributed positive, but not negative, outcomes to internal and

stable causal factors whereas low self-esteem subjects tended to make internal

attributions for failure and external, unstable, and specific attributions for success. In

Mikulincer's (1988) experiment, subjects were exposed to a series of unsolvable

problems. Individuals with an internal attributional style for negative outcomes were








shown to experience more depression and a decrease in performance than were those

with an external style.

Abramson, Metalsky, and Alloy (1988, 1989) proposed a hopelessness theory of

depression with a diathesis-stress component. This model predicts that a style of

attributing negative life events to internal, stable, and global causes and viewing these

events as important (the diathesis) interacts with the actual occurrence of negative life

events (stress) to increase the probability of the hopelessness subtype of depression.

Although never examined, it may be that a similar process influences the development of

internalizing behavior problems in individuals with craniofacial conditions or stigmatized

conditions.

Empirical research has, in fact, shown that the stigmatized may protect their self-

esteem and decrease negative affect by attributing negative feedback to external factors

such as prejudice rather than to internal deficiencies (Crocker et al., 1993; Crocker et al.,

1991). In the first study, overweight women who received negative social feedback from

a male evaluator and who attributed the feedback to their weight and not to the

evaluator's prejudice experienced more negative affect and depression than women who

did not make internal attributions for social rejection (Crocker et al., 1993). In another

study, women who received negative feedback from a prejudiced evaluator and attributed

the feedback to his prejudice (an external factor) reported less depression than did women

who received negative feedback from a nonprejudiced evaluator (Crocker et al., 1991).

In both situations, women who made external attributions for negative outcomes were

better able to protect their self-esteem and decrease their likelihood of depressed affect.








A related experiment (Crocker et al., 1991) with African-American and White

participants and a White evaluator showed both a self-protective effect and a differential

response to positive versus negative feedback. African-American subjects discounted the

negative feedback they received from a White evaluator and, in so doing, maintained a

high level of self-esteem. However, when African-American participants received

positive feedback from a White evaluator, their self-esteem suffered. The authors noted

that these findings are congruent with Goffman's (1963) hypothesis that interactions

between stigmatized and nonstigmatized individuals are often governed by ambivalence,

uncertainty, and difficulty interpreting the motives of others. Thus, stigmatized

individuals may be particularly sensitive to the motives underlying positive feedback.

Such feedback may have positive consequences for self-esteem only when the

stigmatized are certain the feedback reflects their deservingness, and not special

consideration or a fear of appearing prejudiced on the part of the nonstigmatized.

Affect and attributional style appear linked in children as well. In the Seligman et

al. study (1984), children who attributed bad events to internal, stable, and global causes

were more likely to report depressive symptoms than were children who attributed these

events to external, stable, and specific causes. Attributional style also predicted

depression six months later, suggesting that it is a risk factor for affective disorders rather

than vice versa. The possibility that children may copy their parents' attributional style

was suggested by the high correlations between styles of mothers and their children.

Attributional style also predicted depressive symptomatology in children with chronic

illnesses (Schoenherr et al., 1992).








While most of the research examining the relation of attributional style to

problems in living has focused on depression, some attention has been paid to loneliness,

shyness, and difficulties in social and peer interactions. Although they were primarily

interested in evaluating the dimensions of attributional style, Anderson and Riger (1991)

found that a negative attributional style, as measured by the Attributional Style

Questionnaire (Peterson et al., 1982) was predictive of loneliness in interpersonal

situations. And, in discussing the connections among shyness, self-esteem, and self-

consciousness, Cheek and Melchior (1990) reviewed the research literature indicating

that shy people tend to accept personal responsibility for failure and attribute successes to

external, unstable causes. Noting that shy people blame themselves for social difficulties

and tend to ignore, resist, or doubt the accuracy of positive evaluations, the authors

asserted that "the cognitive tendencies involved in shyness are persistently maladaptive

before, during, and after social interactions (p.71).

The relationship between attributional style and success and failure in the social

relationships of children has also been examined. Dweck and Goetz (1978) examined

children's attributions for social rejection and found they were able to distinguish

between internal, stable causes such as ability, and external and unstable causes such as

the mood of the rejector. Children who attributed rejection to internal and stable causes

had more difficulty continuing to pursue their social goals than did children who

presented external explanations for rejection. Additional studies support the influence of

attributions on children's social and peer interactions and on their self-esteem.

Furthermore, there is evidence that altering mistaken attributions for poor social






52

interactions may lead to better social relations in the future (Dodge, McClaskey, &

Feldman, 1985; Sobol & Earn, 1985; Sobol, Earn, Bennett, & Humphries, 1983).

Causal attributions clearly reflect an important aspect of an individual's cognitive

style or appraisal of events and situations and may, as one researcher has noted, even act

as unconscious influences on behavior (Dodge et al., 1985). As presented here,

attributions may serve as "protective" strategies and mediate affective reactions to

positive and negative outcomes. Evidence suggests that a positive attributional style, in

which stable, internal factors are seen as responsible for success and external ones for

failure, may contribute to the generally high levels of self-esteem and good psychological

adjustment found among children and adolescents with craniofacial conditions.

Inadequate use of these strategies may also help explain the low self-esteem and

internalizing behavior problems displayed by some children with facial disfigurements.













CHAPTER 3
SUMMARY AND OBJECTIVES

Literature on the physical attractiveness stereotype and stigmatization combined

with social psychological theories on the development of self-esteem has led to

predictions of major difficulties for individuals with craniofacial conditions. It does not

predict the reality of relative strength and psychological health characteristic of most of

these children. Like their peers with other chronic and/or life threatening conditions,

children with facial differences do not differ substantially from healthy children in their

emotional or psychological functioning. However, they may be at higher risk for specific

behavioral problems, difficulties in social adjustment, and poorer school achievement.

Furthermore, evidence suggests there are significant differences in functioning within

subgroups of children with facial disfigurements.

The fact that specific problems have been noted within subgroups of these

children and adolescents is not surprising. Research shows the presence of clear

normative standards of appearance, and differential perception and treatment of attractive

and unattractive individuals. These differences apply both to peer- and adult-child

interactions. Individuals with craniofacial conditions are viewed more negatively and are

likely to experience instances of prejudice and discrimination. Thus, the stress of coping

with a chronic medical condition may be exacerbated by instances of both felt and

enacted stigmatization. However, the discrepancy between predictions from the literature

and the observed health of many of these children and adolescents highlights how little is








known about specific risk and resiliency factors and variables that may mediate the

impact of negative experiences.

As noted earlier, theoretical models such as Thompson's transactional stress and

coping model and Wallander and Vami's risk and resiliency model (Thompson, Gil,

Burbach, Keith, & Kinney, 1993; Thompson, Gustafson, Hamlett, & Spock, 1992; Vami

& Wallander, 1988; Wallander et al., 1989; Vami & Setoguchi, 1996; Wallander &

Thompson, 1995; Wallander, Feldman & Vari, 1989; Wallander & Vami, 1989),

provide a heuristic framework for exploring sources of vulnerability and resistance in

children and their families. Using such a multivariate, conceptually based approach, the

model developed for this research (See Figure 1) specifically explores the roles of

perceived stigma and attributional style within a larger framework of individual, family,

and social factors. Given the large number of variables in the model, many variables of

both theoretical and practical interest cannot be examined in this study. These include

psychosocial stressors such as major life events, daily hassles, instances of enacted

stigmatization, prejudice, and discrimination, and condition-related variables. Other

variables of interest crucial to individual functioning of individuals but not specifically

examined in this study include social support; family environment and patterns of

interaction; and intrapersonal variables such as temperament, intelligence, and

competence (Benjamins, Hillman, & Saddler, 1993; Benson, Gross, Kellum, Messer, &

Passmore, 1991; Campis, DeMaso, & Twente, 1995; Greenberg & Quamma, 1994;

Hamlett, Gustafson, Spock, & Thompson, 1992). What are examined are the

relationships among certain demographic and condition variables, perceptions of

stigmatization, attributional style, self-concept, and specific indices ofpsychosocial
























Psychosocial Stressors
Condition-related problems
Life events
ENACTED STIGMATIZATION
Teasing
Discrimination


Figure 1. Proposed Model Using Perceived Stigma and Attributional Style.
(Model variables in italics are examined in this study)








adjustment in adolescents with a variety of craniofacial conditions. Independent

variables include age, gender, SES, perceived appearance, number of functional

impairments, special school placement or remediation, and perceptions of stigmatization.

Adjustment or outcome variables include global self-concept, internalizing and

externalizing behaviors, social adjustment and peer interactions. Attributional style is

hypothesized to mediate the relationship between perception of stigmatization and the

outcome variables. The following questions are addressed:

* What is the level of perceived stigma among adolescents with craniofacial
conditions?

* What is the attributional style of adolescents with craniofacial conditions in
regard to positive and negative outcome of events?

* What is the relationship between perceptions of stigmatization, attributional
style, and general measures of self-concept?

* What is the relationship between perceptions of stigmatization, attributional
style, and behavioral, social, and academic adjustment?

Developmental differences in self-concept and an awareness of the age-related

effects of certain variables led to the focus upon adolescents in this study. The normal

developmental tasks of adolescence include the formation of a sense of personal identity,

the establishment of satisfactory peer relations, and the successful negotiation of school

and educational requirements directed toward future career considerations. Adolescents

consistently identify these areas, together with physical appearance, as their primary

concerns (Violato & Holden, 1988; Vami & Setoguchi, 1996). These areas are known to

be among the most difficult for children and adolescents with craniofacial conditions, and

adolescents may be particularly vulnerable to the development of problems.

Furthermore, positive peer relations and satisfactory social relations are of paramount








importance to healthy development: they have been shown to influence academic

success in high school and presage the mastering of intimate adult relationships. They are

also likely to be significantly influenced by experiences of rejection and discrimination,

and by the attributions one makes for negative experiences.

Previous models of adjustment in this population ignored both subjective

experiences and internal mediating factors. Experiences with stigmatization are

presumed to influence adjustment but nothing is known about an individual's subjective

experience. Furthermore, cognitive processes and coping strategies are known to

influence outcome among chronically ill children but we have limited understanding of

these factors in this population. Incorporating such variables into research on children

and adolescents with craniofacial conditions may help explain disparities in previous

studies and increase the knowledge necessary for identifying children at high risk for

psychological maladjustment. Factors promoting greater resiliency in these children and

their families may also be identified.

Hypotheses

Based upon the preceding literature review, the hypotheses of this study are as
follows:

I. Age, gender, SES, and number of functional impairments will not significantly
predict perceived stigma, general self-concept, social adjustment, peer relations, or
externalizing and internalizing behavior problems.

II. Greater satisfaction with perceived facial and physical appearance will predict
higher general self-concept, social adjustment, and peer relations. Greater
satisfaction with perceived facial and physical appearance will predict lower
externalizing and internalizing behavior problems.

III. Higher perceived stigma will predict lower general self-concept, social adjustment,
and peer relations. Higher perceived stigma will predict higher externalizing and
internalizing behavior problems.







58
IV. Perceived stigma will contribute to the prediction of general self-concept, social
adjustment, peer relations, and externalizing and internalizing behavior problems
even when other independent variables (age, sex, gender, SES, number of
functional impairments, perceived appearance) are used in predicting the outcome
variables.

V. The relationship between perceived stigmatization and the adolescent
characteristics of general self-concept, social adjustment, peer network and
internalizing and externalizing behavior problems will be mediated by the
adolescent's attributional style.













CHAPTER 4
METHODS

Participants and Settings

Eighty-three dyads composed of adolescents (53 male, 30 female) with a visible

facial difference and a parent or guardian participated in this study. Participants were

recruited from comprehensive craniofacial clinics in three Florida cities. Of those

participating, 36 (43.37%) were affiliated with the University of Florida Craniofacial

Center (UF) in Gainesville, 25 (30.12%) were affiliated with the Nemours Children's

Clinic (NCC) in Jacksonville, and 22 (26.51%) were affiliated with the University of

South Florida Craniofacial Programs (USF) in Tampa-St. Petersburg.

Adolescents were eligible to participate if they were between 13.0 and 18.0 years

of age with a visible facial difference/craniofacial anomaly, were not enrolled in an

educable or trainable mentally handicapped classroom, had no profound physical

disability such as blindness or inability to walk, and had no more than a moderate hearing

loss (speech reception threshold of 40-60dB) in their better ear. Additionally, both

adolescent and participating parent/guardian were required to speak and read English.

Participants were screened in three stages to insure that eligibility requirements

were not breached. First, clinic records were reviewed to identify potential adolescents.

Secondary screening occurred when potential participants were contacted and invited to

participate in the study. Finally, after informed consent was obtained, each adolescent's

medical record was reviewed to determine if inclusion criteria were met. Of the 133






60

families identified and actually contacted, 16 were ineligible due to developmental delay

or mental handicap, parent unable to read English, or adolescent not living at home, and

19 declined to participate. Of the parents who declined, three stated that their adolescent

was well-adjusted and did not think of themselves as having a facial difference and three

reported their child had psychosocial problems related to their craniofacial condition and

the child did not wish to discuss anything related to it. Eleven parents or adolescents

declined due to lack of time or interest, and two parents reported significant family crises

(recent death or divorce) that precluded participation. Thus 98 (84%) of the 117 eligible

families contacted agreed to participate. However, eleven did not sufficiently complete

one or both sets of questionnaires and data from four families were discarded because it

was later determined that the adolescent did not meet inclusion criteria. Although the

parents of these four adolescents denied any problems during the initial screening

interview, subsequent review of the medical records indicated that their adolescent had

either severe hearing loss or developmental delay that made them ineligible to participate.

The final sample included 83 adolescent/parent dyads, a participation rate of 71%.

Adolescent participants ranged from 13 to 18 years with a mean age of 14.6 years

(S = 1.57 years). Sixty-eight (81.9%) of the adolescents were Caucasian, 6 were

African-American (7.2%), 6 were Hispanic (7.2%), and 3 (3.6%) were from other ethnic

groups. Forty-one adolescents (49.8%) had a diagnosis of unilateral cleft lip

with/without cleft palate (UCL/P), 16 had bilateral cleft lip with/without cleft palate

(19.27%), 13 (15.66%) were identified as having a craniofacial syndrome, and 13

(15.66%) reported various other craniofacial diagnoses. Individuals with a particular

craniofacial syndrome (e.g., Apert or Crouzon) have a recognized pattern of differences








that occur in various areas of the body and are considered to have a single and specific

cause. The features characteristic of a specific syndrome can occur to different degrees,

and a child can have many, some, or only a few of the features. Specific craniofacial

diagnoses such as cleft lip, cleft lip and palate, or hemangioma also vary in severity but

these conditions involve only the structures of the head and face the bones and soft

tissues such as nerves, muscles and fat. Table 1 gives a complete list of the conditions

represented. For some analyses, participants were grouped into three general diagnostic

categories: Group I Unilateral and bilateral cleft lip with/without cleft palate (n=57,

68.7%); Group II Craniofacial syndromes (n=13, 15.7%); Group III Other diagnoses

(n=13, 15.7%).

Of the participating parents or guardians, 67 (80.7%) were mothers, 14 (16.9%)

were fathers, and 2 (2.4%) were guardians or other biological relatives. Fifty-six (67.5%)

of the participating adults were married, 18 (21.7%) were divorced, and 9 (10.8%)

reported some other marital status. Families averaged 2.78 children (n_= 82, SD = 1.52).

Mean SES score, calculated using the Hollingshead four factor index of social status

(Hollingshead, 1975), was 40.13 (n=. 82, SD = 11.71, Mdn = 39.57), corresponding to

the lower end of the minor professional/technical classification. SES raw scores were

normally distributed and ranged from 11 to 64. Demographic and condition-related

information is provided in Tables 2 and 3.

Group comparisons were conducted to determine if there were any significant

differences on selected demographic and condition-related variables among participants

recruited from the three institutions. Chi-square analyses were used for the categorical

variables of gender and diagnostic group. Analyses of variance (ANOVAs) were used








Table 1

Craniofacial Diagnoses of Participants by Institution


Institution
UF NCC USF Total
Diagnosis (n=36) (n= 25) (= 22) ( = 83)

Unilateral Cleft Lip/Palatea 20 10 11 41
(49.40%)

Bilateral Cleft Lip/Palatea 6 6 4 16
(19.27%)

Craniofacial Syndromesb 5 4 4 13
(15.66%)
Treacher-Collins 0 0 1
Goldenhar 1 1 0
Microtia 0 2 0
Hemifacial microsomia 2 0 2
Crouzon's 1 0 0
Pierre-Robin 0 0 1
Velocardiofacial (VCFS) 1 0 0
Stickler 0 1 0

Other' 5 5 3 13
(15.66%)
Ectodermal Dysplasia & CL/P 2 0 1
Bilateral dysmorphic ears 0 2 0
Hemangioma 1 0 0
Parry-Rhomberg syndrome 1 0 0
Facial Nevus 0 0 1
Macrostomia 1 0 0
Facial asymmetry 0 2 1
Scleroderma with Cleft Lip 0 1 0

Note. In selected subsequent analyses, participants are grouped by diagnosis in the
following manner: aGroup I Unilateral and bilateral cleft lip; bGroup II Craniofacial
syndromes; Group III Other diagnoses.








Table 2

Demographic Information by Institution


Institution
UF NCC USF Total
Variable (n=36) (n=25) (n=22) (N=83)


Age (in years)
M 14.80 14.45 14.47 14.61
SD 1.58 1.50 1.65 1.57

Gender
Male (n) 26 16 11 53
Female (n) 10 9 11 30

# Hospitalizations
M 6.23 6.28 6.61 6.34
SD 3.62 3.16 5.22 3.94

# Surgeries
M 6.10 6.20 6.95 6.36
SD 3.41 3.15 5.00 3.80

SES Score
M 44.57** 38.56 34.66** 40.15
SD 12.07 9.24 11.29 11.86

Mother's Educationa
(years completed) M 14.19 13.12 12.57 13.45
SD 2.54 1.39 2.56 2.34

Father's Educationb
(years completed) M 14.49 13.00 12.73 13.64
SD 3.87 2.02 2.05 3.10

#Children in family'
M 3.00 2.84 2.33 2.78
SD 1.96 1.18 0.86 1.52
Note. n = 82. bn= 75.
**difference is significant at p < .01.








Table 3

Rates of Special Educational Placement and Treatment-Related Variables


Variable Number Percentagg


History of Special Educational Placement
Specific Learning Disability 19 22.90
Speech 17 20.50
Gifted or Advanced 8 9.60
Speech and SLD 4 4.8
Speech and Gifted 2 2.4
Hearing Impaired 3 3.6
None 29 34.90

Number repeated grade in school 20 24.10

Number receiving treatment for
Hearing 12 14.5
Speech 8 9.6
Dental or Orthodontic 68 81.1

Number anticipating future surgery 59 71.1

Number of current functional impairments per adolescent
0 55 66.3
1 16 19.3
2 10 12.0
3 2 2.4



for age, SES score, and number of hospitalizations and surgeries. Participants from the

three institutions did not differ on any of the measures except for SES score, E (2,80) =

5.82, 1 = .004. Families from UF/Gainesville obtained significantly higher mean SES

score (44.57) than did families from USF/Tamp-St. Petersburg (34.66). The difference

between Gainesville and Jacksonville participants' SES was not significant.








The three diagnostic categories were also compared on demographic and

condition-related variables. Chi-square analysis indicated that gender and diagnosis were

significantly related, X2 (2, N = 83) = 7.81, 1 = .02, with proportionately more males and

fewer females than expected in the cleft lip/palate group (Group I) and proportionately

fewer males than females in Group III (Other diagnoses). The greater number of males in

the cleft lip/palate group is as expected given the 2:1 sex ratio of males to females

identified for this condition by epidemiologic studies (Owens et al., 1985). Analyses of

variance indicated the differences among diagnostic groups on SES score, number of

functional impairments, and number of surgeries were not significant. However, number

of hospitalizations was significantly different for adolescents in Diagnostic Groups I and

II, F(2,75) = 3.22, p < .05. Adolescents in Group I (UCL/P and BCL/P) averaged 6.95

hospitalizations (SD=3.49) while those in Group II (Craniofacial syndromes) averaged

3.85 (SD= 3.49). Mean number of hospitalizations for those in Group III (Other

diagnoses) was 6.38 (SD=5.97).

Measures

Measures Completed by Adolescent Participants

Physical appearance

Self Description Questionnaire II, Physical Appearance Scale (SDQ-

II; Marsh, 1990). The construct of general perceived physical appearance was measured

using the eight-item Physical Appearance subscale of the Self Description Questionnaire-

II (Marsh, 1990). This subscale assesses the degree to which the adolescents are happy

with the way they look, think they have a nice looking face and body, and compare their

appearance to their peers. Internal consistency (coefficient alpha) reliability of the








Physical Appearance subscale is .91 (Marsh, 1990). Test-retest reliability over seven

weeks was .75 (Marsh, 1990). The SDQ-II is based upon a multifaceted, hierarchical

model of self-concept and designed for individual scale interpretation. Scores range from

8 to 48, with higher scores indicating greater satisfaction with one's physical appearance.


Perceived stigma

Social Perception Questionnaire. The construct of perceived stigma was

operationally defined as the subjective belief that having a facial difference/craniofacial

anomaly negatively affects social relationships and interactions. There is no standardized

measure of perceived stigma designed for use in this population. However, a

questionnaire designed to assess perceived stigma among individuals 12 to 20 years old

with epilepsy has been used in several studies (Westbrook et al., 1992) and was modified

for use in this research (see Appendix A). The Westbrook et al. questionnaire included

four items that, in a factor analysis, loaded on a single factor with relatively large

coefficients; varimax factor loadings were .91, .90, .75, and .52. Interitem correlations

were generally moderate (average .46) and internal consistency was .78, as measured by

Cronbach's alpha. The wording of the items was changed so that "facial

difference/craniofacial anomaly" was substituted for the word "epilepsy". In addition, the

wording of one of the items was changed to replace "sexual relations" with "can date or

have intimate relationships". Questions were scored on a 0-5 point Likert (visual analog)

scale. Zero-point responses indicate no perceived stigma, while the adolescents graded

positive perceived stigma responses from 1 to 5. Higher numbers indicated greater

perceived stigma. Items were summed to produce a total score for use in analyses; 20

was the maximum possible score.








Attributional style

KASTAN Children's Attributional Style Questionnaire (CASQ; Seligman et

al., 1984) is the major instrument utilized by researchers to examine the ways youth 7 to

18 years attribute causality for positive and negative events. The 48 events tap three

attributional dimensions: interal-external, stable-unstable, global-specific. The internal-

external dimension refers to whether the locus of causality is internal (due to self) or

external (due to others or circumstances). The stability dimension refers to the degree to

which the child views the cause of the event as being stable over time. The globality

dimension refers to the degree to which the child views the cause of the event as being

generalizable across situations. Each item comprises a situation (e.g., "You get good

grades") and two possible attributions to explain why the situation occurred (e.g., "I am a

hard worker" vs. "School work is easy"). Children are instructed to choose the alternative

that best describes why the event happened to them. Half the situations represent good

outcomes; half represent bad outcomes. A composite score for positive and negative

events is derived as well as an overall composite score. The lower the difference score

between positive and negative event composite scores (summary score), the more

pessimistic is the child's explanatory style for causes of events. Adequate psychometric

properties, including test-retest reliability and internal consistency have been

demonstrated (Kaslow, Rehm, & Siegel, 1984; Seligman et al., 1984).


Self-concept

Self Description Questionnaire-II, General Self Subscale (SDQ-II; Marsh,

1990). The General Self subscale of the SDQ-II was used as a measure of global self-

concept. The SDQ-II is a 102 item questionnaire designed to measure self-concept in







68
adolescents in grades 7 through 12. Each of the 11 SDQ-II domains contains 8-10 items,

half of which are negatively worded to disrupt positive response biases. The SDQ-II

subscales are: Physical Abilities, Physical Appearance, Opposite-Sex Relations, Same-

Sex Relations, Parent Relations, Honesty-Trustworthiness, Emotional Stability, Math,

Verbal, General School, and General Self. In addition, a Total Scale score is calculated

by summing the individual subscale scores. The coefficient alpha estimate of reliability

for each subscale varies from .83 to .91, whereas the average correlation among the

factors is modest. The scale is based upon a theoretical model that conceives of the self-

concept as a multidimensional, hierarchical entity. Although normed on a group of 5,494

Australian adolescents, the SDQ-II has been used extensively throughout the world,

including within the United States. It produces scores comparable to those obtained from

a multidimensional self-concept scale (Bracken, 1992) normed in the United States

(r=.80), and factor structure and construct validity have been consistently supported.

Internal consistency (coefficient alpha) reliability for the General Self subscale is .88 and

test-retest reliability over a seven-week interval is .85 (Marsh, 1990). Scores on the

General Self subscale range from 10 to 60, with higher scores indicating higher overall

self-worth and self-satisfaction. As only intragroup comparisons were made, raw scores

were used in all calculations.


Social adjustment

Social Skills Rating System (SSRS; Gresham & Elliott, 1990). The SSRS

samples the domains of social skills, academic competence, and problem behavior. It

was designed for use with normal and slightly handicapped students for whom social

skills deficits might limit academic performance. The Social Skills sub-scale of the






69

Student Form was used as a measure of adolescent social adjustment. The SSRS offers

Parent, Teacher and Student Forms at three developmental levels (i.e., preschool,

kindergarten through sixth grade, seventh through twelfth grade). Only the Parent and

Student forms for grades seven through twelve were used. The student version is for

youth who are capable of reading at the third grade level and assesses only social skills

while the parent version assesses both social skills and problem behaviors. The SSRS

standardization sample included 4,170 self-ratings of children and youth, 1,027 parents,

and 259 teachers. The sample represented White, Black and Hispanic individuals drawn

from all regions of the United States, and urban, rural, and suburban communities.

Internal reliability (coefficient alpha) is excellent for all forms in regard to the Social

Skills Scale (.83 .94) and Problem Behavior Scale (.73-.88). Coefficient alphas are .83

for the Secondary student self-report Social Skills scale and.90 for the Parent report

Social Skills scale (Gresham & Elliot, 1990). Test-retest reliability for the self-report

Social Skills scale is .68, computed for a 4-week period using the Elementary

standardization sample. Content, social, criterion-related, and construct validity are

adequate. Raw scores were used in all statistical analyses.

Peer Interaction Record (PIR;Thompson, 1994). The number of adolescents'

social interactions with peers was assessed using a modification of the Health and Daily

Living Form (Moos, Cronkite, Billings, & Finney, 1984) entitled the Peer Interaction

Record (PIR; Thompson, 1994). The PIR asks the adolescent to estimate how often they

engaged in each of 12 typical peer activities during the past week. The number of

different activities engaged in and the number of different peers mentioned across the 12

activities were calculated to estimate the adolescent's activity level and peer network.






70
The PIR has been shown to be sensitive to differences in the quality and quantity of peer

interactions in adolescents with chronic illnesses (Pendley, Dahlquist, & Dreyer, 1997),

and discriminates between same- and opposite-sex interactions, and between group (e.g.,

Boy Scouts, organized religious activities) and peer-initiated activities (See Appendix B).

Measures Completed by Parent or Guardian

Demographic information

Demographic Questionnaire. Parents completed a brief questionnaire (see

Appendix C) identifying marital status, parents' education and occupation, ethnicity, and

number of children. Information regarding their adolescent's school status and current

and past special educational placements was also obtained. Condition-related variables

such as number of hospitalizations and surgeries, and number of functional impairments

(e.g., speech or chronic hearing problem, learning disability) requiring therapy or

treatment at the time of the study were also assessed by parent report. Number of

functional impairments was totaled with one point given for each impairment reported by

the parent or recorded in the medical record. Scores ranged from 0 (no functional

impairments) to a maximum of 3 (1 point each for hearing impairment, speech

impairment, and special educational placement).


Perceived stigmatization

Social Perception Questionnaire. The parent or primary caregiver completed

the Social Perception Questionnaire, described previously, giving their perceptions of

their adolescent's experience of stigmatization. The wording of the items was altered to

reflect this change, i.e., replacing "your appearance/facial difference" with "your child's

appearance/facial difference". Internal consistency of the original four-item scale was






71
.78, as measured by Cronbach's alpha correlation coefficient (Westbrook et al, 1992). A

copy of the questionnaire is included in Appendix A.


Attributional style

The Attributional Style Questionnaire (ASQ; Peterson et al., 1982). The ASQ

presents 12 hypothetical events 6 good and 6 bad for which participants are asked to

make attributions and rate these attributions on internal-external, stable-unstable, and

global-specific dimensions. Composite scores for both positive and negative events are

derived, as well as an overall composite attributional style score. Internal reliability for

the positive and negative subscales, estimated using Cronbach's coefficient alpha, are .75

and .72, respectively.


Social and behavioral adjustment

Social Skills Rating System, Social Skills and Behavior Problems Scales

(SSRS; Gresham & Eilliot, 1990). The Behavior Problem scale of the SSRS, discussed

above, served as the measure of behavioral adjustment. This scale was completed by the

parent/guardian and assessed both internalizing and externalizing behavioral difficulties,

as well as the parent's perception of their adolescent's social skills. Coefficient alphas

are .82 for the Externalizing subscale, .72 for the Internalizing subscale, and .81 for the /

total Problem Behavior scale. Test-retest reliabilities, calculated over a 4-week period for

the Elementary standardization sample, were .58 for Externalizing behaviors and .48 for

Internalizing behaviors (Gresham & Elliott, 1990). The Social Skills scale is a parent-

rated assessment of their child's competence in social interactions and is comparable to

the student form of the SSRS discussed previously.






72
Peer Interaction Record (PIR; Thompson, 1994). The number of adolescents'

social interactions with peers was assessed using a modification of the Health and Daily

Living Form (Moos, Cronkite, Billings, & Finney, 1984) entitled the Peer Interaction

Record (PIR; Thompson, 1994). The PIR asks the parent to estimate how often their

adolescent engaged in each of 12 typical peer activities during the past week. The

number of different activities engaged in and the number of different peers mentioned

across the 12 activities were calculated to estimate the adolescent's activity level and peer

network. The PIR has been shown to be sensitive to differences in the quality and

quantity of peer interactions (Pendley et al., 1997).


Procedure

Appropriate Institutional Review Board approval was obtained from all

participating institutions as well as from the Florida Department of Health Review

Council for Human Subjects. Adolescents with facial differences were recruited either

during a routine clinic visit or by telephone from lists provided by the cooperating

institutions. Craniofacial clinic patient rosters were examined and potential participants

identified. Letters explaining the study were sent to the parents or guardians of eligible

patients. Approximately one to two weeks later, either the principal investigator (PI) or a

trained research assistant (RA) called to answer any questions and solicit participation. If

the parent and adolescent were interested in participating, arrangements were made to

collect data either during a clinic visit, at the family's home, or by mail. All participants

were given a copy of the appropriate informed consent form to keep and invited to

receive a summary of study results after it is completed. Each participant was informed

of their right to refuse to answer any question and their right to discontinue their








participation at any time without jeopardizing their family's medical care. Order of

presentation of measures was counterbalanced and the measures were divided into two

groups to minimize order effects. Adolescents were compensated $10.00 for each set of

questionnaires completed or $20.00 for completing all measures. Participating parents

were compensated $5.00 for each set completed or $10.00 total.

Data collected during a clinic visit. A research team member met both

adolescent and parent/guardian, reviewed procedures, and obtained signed Informed

Consent and Assent forms. Participants then completed the first set of measures.

Remaining questionnaires were completed either during a later clinic visit or, if they

preferred, participants were provided with a stamped, addressed, return envelopes and

permitted to finish them at home. Follow-up phone calls were made to review

instructions, answer any questions, and encourage return of all questionnaires.

Data collected by mail or at home. Participants were mailed the appropriate

Informed Consent and Assent, that they were asked not to sign until contacted by the

investigator; detailed instructions; the first set of questionnaires; and a stamped return

envelope. Approximately 5-7 days later the family was contacted by phone and

Informed Consents and instructions were reviewed with both the adolescent and parent.

After the first set was returned, the second set of questionnaires and instructions was

mailed to the family. Again, phone calls were made to ensure measures were

appropriately completed and returned. Two families were mailed the first set of

questionnaires and completed the second set at home, in the investigator's presence.

After obtaining informed consent, appropriate medical records were reviewed for

information regarding the adolescents' craniofacial diagnosis and results of their most






74

recent hearing and speech tests. All questionnaires were coded by number and kept

separately from the informed consents in files accessible only to the researchers.

Measures were scored according to standard procedures by either the PI or RA and

entered into the database. SES score and category were calculated using the four-factor

index of social position (Hollingshead, 1975).














CHAPTER 5
RESULTS

The first section of this chapter contains descriptive statistics for demographic and

test variables, comparisons between the craniofacial sample means and the

standardization sample means for selected measures and gender, institution, and

diagnostic group comparisons (Tables 3-6). Due to the large number of comparisons

conducted, a more stringent significance level of2=.01 was adopted to minimize the

chance of Type I errors for these analyses.

Intercorrelations of variables are presented next (Tables 7-8), followed by results

of multiple regression tests of the hypotheses (Tables 9-18). All statistical analyses of

the data were performed using the Statistical Package for the Social Sciences (SPSS/Base

10, 1999).

Description of Sample Variables

Adolescent Characteristics

Adolescents ranged in age from 12.80 to 18.00 years with a mean age of 14.61

(SD = 1.57). Mean family SES was 40.13 (SD = 11.71) using the Hollingshead (1975)

four-factor index of social status. Details of condition-related variables are given in

Table 3. In calculating the total number of functional impairments, one point was given

for each impairment (chronic hearing, speech, learning disability) requiring treatment or

special educational placement at the time of the study. Based on these criteria, 55

(66.3%) of the adolescents reported no functional impairments, 16 (19.3%) reported one,

10 (12%) reported two, and 2 (2.4%) reported three functional impairments.









Forty-five (54.2%) of sample adolescents had a history of enrollment in special

classes for speech, specific learning disability, or hearing impairment, and 20 (24.1%)

had repeated a grade in school. At the time of the study, 68 (81.9%) were undergoing

dental or orthodontic procedures, 12 (14.5%) were receiving some treatment for hearing

problems (i.e., antibiotics for ear infections, hearing aids, etc.), and 8 (9.6%) were in

speech therapy. Participants reported a mean of 6.34 hospitalizations (n=83, SD= 3.94)

and 6.34 surgeries (n=83, SD=3.80). A majority of participants (71.1%) anticipated

undergoing additional surgical procedures at some time in the future.

Distribution of Variables

Means, standard deviations, and Cronbach's alpha reliability coefficients for

adolescent variables and questionnaires are presented in Table 4. Those for the parent

questionnaires are given in Table 5. Scores were normally distributed for SES, both raw

and standardized scores on Student and Parent versions of the SSRS Total Social Skills

Scale, (SSRS-Student, SSRS-Parent) and the Parent Attributional Style Questionnaire

(PASQ). The remaining variables were not normally distributed and could not be

transformed to normal distributions. Thus, nonparametric or distribution-free statistical

procedures were used in those analyses where the assumptions required for the use of

parametric techniques were violated.

Adolescent Measures

Attributional style

The mean for the Children's Attributional Style Questionnaire (CASQ) composite

positive events score (M= 13.71; SD =3.63) was not significantly different from the

mean for the groups on which the CASQ was developed (M = 13.46; SD =3.91 ), t(81)=









Table 4

Sample Means and Standard Deviations Adolescents


Variable n M SD a

Adolescent Characteristics


Age in Years
SES
Number of Functional Impairments

Adolescent Ouestionnaires

Attributional Style
CASQ Composite Positive
CASQ Composite Negative
CASQ Overall Score
Physical Appearance
SDQ-II Physical Appearance


Self-Concept
SDQ-II General Self 82

Perceived Stigma
Social Perception Questionnaire 83

Social Adjustment
SSRS Student Raw Social Skills 82
SSRS Student Standardized Social Skills 82
PIR Peer Network 82
PIR # Activities 82


14.61 1.57
40.13 11.71
0.51 0.80




13.71 3.63 .59
7.68 3.04 .52
6.02 5.52 .66

33.54 10.14 .91


52.21 8.76 .78


6.58 5.25 .92


52.16 8.62 .82
102.98 14.97
5.31 4.87 --
6.13 2.78 .73


.62, p = .54. However, the difference for the total negative events score was significant.

The craniofacial sample obtained a mean of 7.68 (SD = 3.04) compared to the original

sample's mean of 6.34 (SD = 2.79), suggesting that this group of adolescents with facial

differences were more likely to make internal, stable, and global attributions for negative

events, t (81)= 4.0, p = .000. The CASQ overall composite attributional style score, used

in all statistical analyses, was calculated by subtracting the total score for negative events









Table 5

Sample Means and Standard Deviations Parent Ouestionnaires


Variable n M SD a


Attributional Style
ASQ Positive Composite 80 5.34 .74 .75
ASQ Negative Composite 80 4.13 .83 .78
ASQ Overall Composite 80 1.21 .99

Perceived Stigma
Social Perception Questionnaire 83 5.33 5.05 .96

Behavioral Adjustment
SSRS Parent Total Behavior Problems 82 9.04 4.21 .82
SSRS Behavior Problems-Standardized 82 102.84 14.20
SSRS Parent Externalizing Problems 82 4.39 2.42 .78
SSRS Parent Internalizing Problems 82 4.74 2.45 .76

Social Adjustment
SSRS Parent Raw Social Skills 82 54.26 10.39 .91
SSRS Social Skills Standardized 82 98.62 14.94
PIR Peer Network 81 5.33 4.89



from that for positive events, with a lower score representing a more pessimistic

attributional style. In this sample, the CASQ overall attributional style score (M = 6.02,

SD = 5.52) was slightly lower than, but not significantly different from, that of the

reported sample's mean of 7.12, t (81) = -1.78, 2 = .08. Cronbach's alpha reliability

statistics for the craniofacial sample's composite positive and composite negative events

scales were .59 and .52. Average reported internal consistency reliabilities are .69 and

.52, respectively. Cronbach's alpha reliability for the craniofacial sample's composite

attributional style score was .66, which is within acceptable limits and comparable to

other reported reliability statistics (Seligman et al, 1984).








The three dimensions of attributions (Internal-Exteral, Stable-Unstable, Global-

Specific) for the negative events subscale were compared to those of the normative

sample in order to better understand the factors contributing to craniofacial sample's

more pessimistic attributional style. T-tests indicated no significant group differences on

the Stability dimension, t (79)= .971, p = .334. However, the results indicated that these

adolescents were significantly more likely to attribute negative events to internal (t (79)=

2.69, 1 <.00) and global causes (t (79) = 8.24, p < .00).

Physical appearance

Adolescents' perception of their physical appearance was measured using the

eight-item Physical Appearance subscale of the Self Description Questionnaire-II (SDQ-

II Appearance). The sample mean of 33.45 ( = 10.14) was not significantly different

from the standardization group mean of 31.2 (S = 10.3), (80), =2.0, p = .05. There

were also no statistically significant differences between the craniofacial sample male (M

= 34.26, SD = 10.54) and female (M = 32.16, SD = 9.28) scores and the standardization

group male (M =34.2, S = 9.6), t (49) = .04, p = .97, and female scores (M = 28.4, SD =

10.2), t (30) = 2.26, 2 = .03. Internal consistency reliability for the sample's SDQ-II

Appearance subscale (a = .91) exactly equaled the previously reported coefficient alpha.

Self-concept

Mean self-concept score for the craniofacial sample, as measured by the SDQ-II

General Self subscale, was 52.21 (D = 8.76), significantly higher than that of the

standardization mean of 48.3 (S = 9.7), (80) = 4.02, < .01. When examined by

gender, there were no significant differences in self-concept scores for males in the

craniofacial sample (M.= 52.1, SD = 9.1) versus the standardization group (M = 49.1, SD








= 9.6), t (50) = 2.4, 2 = .02. However, the sample mean for females (M = 52.23, SD =

8.30) was significantly higher than that of the standardization group's mean (M= 47.4,

SD = 9.7), t (29)= 3.2, = .003. Coefficient alpha for this administration was .78,

somewhat lower than the previously reported internal consistency reliability of.88.

Perceived stigma

Perceived stigma was operationally defined as the belief that one's craniofacial

condition and appearance negatively affected social interactions. The Adolescent Social

Perception Questionnaire (ASPQ), composed of four items, was used in an attempt to

quantify this construct. Zero-point responses on each item indicated no perceived stigma,

while positive responses were graded on a 1 to 5 scale. Items were summed to yield a

total score that was used in all statistical analyses. Possible scores ranged from 0 to 20,

with higher scores indicating greater perceived stigma. Results for individual questions

were tabulated and are presented in Appendix D.

Scores ranged from 0-5 on each item, and from 0-20 for the full questionnaire.

Thus, scores for this sample of adolescents were distributed across the entire range of

possible values. Sample mean was 6.58 (SD = 5.25) and Cronbach's alpha correlation

coefficient was .92, indicating high internal consistency. Seventeen percent of the

adolescents had a total score of 0 while 83% of adolescents reported some experience of

stigmatization in their social interactions, i.e., they had a total score of one or greater.

However, while the vast majority of adolescents perceived some negative impact, many

participants did not report any belief that their facial difference led to rejection or

stigmatization in specific areas of social functioning. For example, 19% had a score of

"0" on the question asking whether they thought their facial difference affected whether









others wanted to be friends with them; 25% responded negatively to the question as to

whether they thought it affected whether people liked them; 34% felt their facial

difference did not affect their inclusion in social events; and 30% reported feeling their

appearance had no negative effects upon dating and intimate relationships.

For descriptive purposes, adolescents were divided, based upon their total scores,

into three categories according to whether they reported None Low (0-6), Moderate (7-

13), or High (14-20) perceptions of stigmatization. Forty-six (55.4%) of this sample

reported a Low level of perceived stigma, 29 (34.9%) reported experiencing a Moderate

level of stigmatization, and 8 (9.6%) of the adolescents reporting feeling a High level. In

sum, these results suggest significant variability in perceptions of stigmatization among

this sample of adolescents, with virtually all reporting some negative experiences and

almost 50% perceiving moderate to high levels of social rejection and isolation secondary

to their craniofacial condition. As noted previously, gender, age, diagnostic category,

number of functional impairments, and racial/ethnic identity were not significantly

related to perceptions of stigmatization.

Social adjustment

Although raw scores were used in all statistical analyses, standardized scores and

behavioral levels were calculated in order to describe and compare the social skills levels

of craniofacial participants. Standardized mean scores (M = 102.98, SD = 14.97) for

adolescent self-reported social skills (SSRS-Student Social Skills scale) were not

significantly different from the normative sample standard scores (M = 100, SD = 15), t

(82) = 1.79, = .08. Cronbach's alpha coefficient was .82 and also compares favorably

to the normative sample coefficient alpha of .83. Raw scores were also translated into









descriptive Behavioral Levels, derived from cut-off points based upon the SSRS

standardization sample. Raw scores within one standard deviation of the sample mean

are considered to be in the Average range, those above one standard deviation are labeled

More, and those one standard deviation below the mean are labeled Fewer.

Classification of the craniofacial adolescents into these Social Skills Behavioral Levels

resulted in 12 (14.5%) classified as displaying Fewer social skills, 55 (66.3%) as

displaying an Average level, and 15 (18.3%) as exhibiting More social skills than the

average for the standardization group.

The number of different peers mentioned across the 12 activities listed on the PIR

was calculated to estimate the adolescent's peer network. Mean for this variable was

5.31 (S = 4.87), and scores ranged from 0 to 28.

Parent/Guardian Measures

Attributional style

Means and standard deviations for composite positive, composite negative, and

overall attributional style scores on the Attributional Style Questionnaire (ASQ) are

presented in Table 5. Differences between craniofacial parent means and the

standardization sample's means on the ASQ were not statistically significant [(Positive -

M = 5.25, SD =.62, t (79) = 1.09, p = .28); (Negative M = 4.12, SD = .64, t (79)= .097,

p =.92); (Overall M = 1.14, t (79)= .74, p =.46)]. Respectable alpha coefficients of.75

and .78 were obtained for the composite positive and negative subscales, respectively.

These compare favorably with standardization coefficient alphas of .75 and .72. for

positive and negative subscales.









Perceived stigma

Total scores on the Parent Social Perception Questionnaire (PSPQ), used to assess

parental perceptions of their adolescent's experience of craniofacial-related

stigmatization, ranged from 0-19 with a sample mean of 5.33 (SD = 5.05). Cronbach's

alpha correlation coefficient for the four-item scale was .96. The format for this

questionnaire exactly paralled that completed by the adolescents, and thus possible scores

ranged from 0-5 for each item and 0-20 for the whole scale. Individual item results are

presented in Appendix E.

Adolescent and parent perceptions of stigmatization, using the total scale scores,

were compared using the Wilcoxon test for matched-subjects. The results indicated a

significant difference, with adolescents reporting higher levels of perceived

stigmatization than their parents: z =-2.13, p<.05. When responses to individual

questions were examined, parents reported less perceived stigma related to their

adolescent's facial difference than the adolescents reported. Twenty-seven percent of

parents thought their child's condition had absolutely no effect on whether others wanted

to be friends with their adolescent, 35% of parents thought it had no effect upon whether

others liked their adolescent, 35% felt it did not affect social invitations and activities,

and 43% believed their adolescent's facial difference would have absolutely no impact on

dating and intimate relationships. Twenty-five percent of parents viewed their

adolescent's facial difference as having absolutely no negative impact on social

interactions (i.e., total score summed over all questions was 0). When parents were

grouped according to amount of stigmatization they perceived their adolescent to

experience, 52 (62.7%) fell into the None-Low level category, 23 (27.7%) reported a






84

Moderate level, and 8 (9.6%) reported perceiving a High level. Thus, overall, just 37%

of parents saw their children as being moderately or highly stigmatized in social

situations as a result of their facial difference.

Behavioral and social adjustment

The mean of the craniofacial parents' SSRS-Parent Social Skills Scale

Standardized scores (M = 98.62, SD = 14.94) did not differ significantly from the

standard scores of the normative sample (M = 100; SD = 15), t (81) = -.835, = .41.

When classified according to descriptive behavioral levels, 17 (21.00%) parents reported

that their adolescents exhibit Fewer social skills than the standardization group, 52 (63%)

reported an Average level, and 13 (16%) viewed their children as having More social

skills. Internal reliabilities for the craniofacial sample and the standardization sample

were .91 and .90, respectively

Parent reported externalizing and internalizing behavior problems were also

assessed and a total behavior problem score calculated. Cronbach's coefficient alphas

were .78 for the externalizing scale, .76 for the internalizing scale, and .82 for the total

behavior problem scale. These compare favorably with those from the standardization

sample, which were .82, .72, and .81, respectively. There is no statistically significant

difference between the obtained mean of 102.84 (SD = 14.20) on the Total Behavioral

Problems Scale and the normative sample mean of 100 (SD = 15), t(80) = 1.8, = .08;

standardized scores are not calculated for subscales. Behavioral Level placements for the

externalizing and internalizing subscales and the total behavioral problems scale are

shown in Table 6.








Table 6

Behavioral Problem Levels for Exteralizine. Interalizin. and Total Behavioral
Problems (N= 83)

Exteralizing Internalizing Total
Behavioral Level n % n % n %

Fewer 7 8 9 11 6 7

Average 64 77 62 75 57 69

More 10 12 10 12 18 22



Group Comparisons

Institution, diagnostic category, and gender comparisons were conducted on

independent variable means to determine if there were significant within group

differences that would impact subsequent analyses and interpretation of results. For

variables with normal distributions, either t-tests or ANOVAs were performed. Mann-

Whitney U and Kruskal-Wallis independent sample tests were performed on nonnormally

distributed variables. With the exception of SES, no significant differences were found

on any of the variables used in tests of the hypotheses. Thus, the data were pooled across

these distinctions. As noted previously with regard to SES, there was a significant

difference in SES between those adolescents from UF and those from USF. Hollingshead

(1975) mean scores were 44.57 (SD = 12.07) for UF families, 34.66 (SD = 11.29) for

USF families, and 38.56 (SD = 9.24) for families from Nemours. Furthermore, the only

other significant institution, diagnostic, or gender group difference found among all the

measures employed was on the SSRS-Parent Total Social Skills Scale, where









standardized scores for males (M = 101.23, SD = 13.27) were significantly higher than

scores for females (M = 93.86; SD = 16.79), t (80) = 2.18, E = .03).

Additionally, scores on independent and dependent variables were compared on

the basis of participant's ethnicity and whether they had ever been diagnosed with a

learning disability. The former was done to evaluate possible confounds due to racial or

ethnically based experiences of prejudice and stigmatization. Due to the relatively small

percentage (15%) of ethnic minority adolescents, participants were divided into only two

groups Majority group adolescents (Caucasian) and Minority group adolescents

(African-American, Hispanic-American, and Other). Using these two groups, there were

no statistically significant differences on age, number of functional impairments, SES,

perceptions of stigmatization, attributional style, or any other independent or dependent

variables with the exception of the PSSQ Externalizing Behavior Problem Scale and the

related PSSQ Total Behavior Problem Scale. On the PSSQ Externalizing Behavior

Problem Scale, Majority group adolescents scored significantly higher than Minority

group adolescents (Majority M = 4.76; Minority M = 2.7; Externalizing Mann-Whitney

U: z = -2.91, p=.004). Majority group adolescents' Total Behavior Problem Standard

Scores (M = 104.44, SD = 14.8) were also significantly higher than Minority group

adolescents' standard scores (M = 95.8; SD = 8.7), t(79) = 2.99, 2=.005. Of interest,

given the negative correlation between SES and externalizing behavior problems in the

sample, is the fact that families of Minority adolescents had a higher average SES than

Majority adolescents, though the difference was not significant. Adolescent rated self-

concept was also higher among Minority than Majority participants while the reverse was

true for self-ratings of appearance.









The posthoc decision to examine the relationship between learning disabilities

(LD) and outcome variables was based on growing evidence for unusually high rates of

learning disabilities among individuals with craniofacial conditions and a growing

awareness of the need to explore the possible impact of learning disabilities on

psychosocial adjustment in this population. There were no significant differences among

this sample's adolescents with and without LD in terms of age, SES, overall attributional

style, perceptions of stigmatization, and self-ratings of appearance and self-concept.

However, significant differences between participants with and without learning

disabilities were observed on ratings of social skills, internalizing behavior problems, and

attributional style for negative events. Adolescents with learning disabilities rated

themselves as having fewer social skills than did adolescents without learning disabilities,

t(80) = -3.39, p=.001. Parents also rated their adolescents with LD as having fewer

social skills, t (1,80) = -3.02, p=.003, and as having more internalizing problems than

their nonleaming disabled peers (Mann-Whitney U z=-1.93; p=.05). In addition, the

adolescents with LD had significantly higher CASQ scores for negative events than did

those without learning disabilities, indicating that they have a greater tendency to

attribute bad outcomes to internal, stable, and global causes (Mann-Whitney U z = -2.60;

S= .009).

Intercorrelations of Variables

A correlation matrix including each of the dependent variables, demographic

characteristics, and other selected variables of interest is presented in Table 7. Pearson

correlations were computed for normally distributed variables and Spearman correlations

were computed for nonnormally distributed variables. As a large number of correlations









were computed, many of these associations may be due to chance. However, they are

presented as an aid in interpreting the regression analyses and understanding patterns of

association among variables.

There were few significant associations between adolescent participant

characteristics and other variables. Among the variables of age, gender and SES, only

the correlation between gender and SES was significant (r = -.22, p = .05). Males in the

sample were from families with higher mean SES levels than were females. Higher SES

was also associated with fewer number of functional impairments (r = -.29, p = .009),

lower adolescent perceptions of stigmatization (r = -.34, p = .002), and reduced

externalizing behavior problems (r = -.26, p = .016) as well as with higher levels of

parent reported social skills (r = .30, p =.007). Increased number of functional

impairments was negatively correlated with adolescent-rated social skills (Q = -.26, 1 =

.02). However, and contrary to expectations from previous literature, there were no

significant associations between number of functional impairments and adolescent

perceptions of stigmatization (r = .00, p = .99), adolescent self-reported physical

appearance (r = -.08, p = .55) and self-concept (r = -.09, p = .52), or parent reported

internalizing (r= .21, = .06), externalizing (r = .16, g = .14), or total behavior problems

(r= .20, = .08).

In contrast, adolescent perceptions of stigmatization related to their facial

difference were significantly and highly correlated with a large number of variables.

Higher ratings of perceived stigmatization were associated with higher levels of

externalizing (r = .28, p =.01) and internalizing (r = .34, p = .002) behavior problems and







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lower ratings of physical appearance (r = -.63, p =.000), self-concept (r = -.50, 2 =.000),

and social skills (r = -.34, p = .002 and -.40, p = .000, for adolescents and parents,

respectively). Greater perceived stigmatization was also significantly related to a less

optimistic attributional style (r = -.47, p = .000), as higher scores on the CASQ Overall

scale reflect a more positive or optimistic approach. The association between parent and

adolescent perceptions of stigmatization was also highly significant r = .53, P = .000).

Furthermore, correlations between parent reports of perceived stigmatization and other

variables are similar to adolescent perceptions.

To ascertain those psychological and interpersonal variables that are related to

attributional style, correlations were calculated using not only the composite attributional

style score but also the attributional style scores for both positive and negative events. To

control for the family-wise error rate, a Bonferroni adjustment was made (.05/13=.004);

correlations were considered statistically significant only ifp < .004. These results are

given in Table 8.

None of the demographic or condition related variables were significantly

correlated with the adolescents' attributional style for either positive or negative events,

or with their composite attributional style. However, as with adolescent perceptions of

stigmatization, attributional style was significantly and highly correlated with a number

ofpsychosocial variables. Higher scores on both the positive events and composite

scales are generally associated with more adaptive attributional styles. Thus, more

positive optimistic attributions were positively correlated with self-reported physical

appearance, self-concept, and social skills, and negatively correlated with perceptions of

stigmatization and parent-reported internalizing behavior problems. A more pessimistic









Table 8

Correlations of CASO Scales and Variables


Age
Gender
SES
# Functional Impairments
# Hospitalizations
# Surgeries
Social Perceptions
SDQ Physical Appearance
SDQ General Self
CSSQ Social Skills
PSSQ Externalizing
PSSQ Internalizing
PIR Peer Network
Spearman's correlations.
** L .004


Positive

-.09
.17
.05
-.12
.04
-.01
-.45**
.43**
.53**
.47**
-.18
-.43**
os


CASQ Attributional Style
Negative

.08
.06
-.02
.21
.00
-.04
.29
-.31**
-.32**
-.41**
.07
.32**
18


attributional style was significantly associated with lower ratings of physical appearance,

self-concept, and social skills as well as higher levels of internalizing behaviors.

Correlations between the three attributional style variables and those of adolescent

externalizing behavior problems and peer network were not significant.

As with perceptions of stigmatization, composite adolescent attributional style

was significantly and positively correlated with parental composite attributional style ( =

.27; p< .05). However, in contrast to parent perceptions of stigmatization, none of the

other adolescent psychosocial variables were significantly correlated with parental

attributional style.

The correlation between adolescent self-reported physical appearance and general

self concept was highly significant (r = .62, =.000). Higher self-rated physical


Composite

-.07
.05
.05
-.17
.04
.04
-.47**
.51**
.58**
.51**
-.15
-.48**
.18


09




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PERCEPTIONS OF STIGMATIZATION, ATTRIBUTIONAL STYLE AND ADWSTMENT IN ADOLESCENTS WITH CRANIOF ACIAL CONDITIONS By ANN MARIE USIT ALO A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2002

PAGE 2

ACKNOWLEDGME N TS I would first and foremost like to thank the adol es cents and parents who participated in this study and who were the in s piration for it. My appreciation also goes to the staffs of the University of Florida the Nemour s Children s Clinic, and All Children's Hospital craniofacial clinics who allowed m e access to their patients and who helped me in numerous ways to collect the data for thi s study. Particular thanks are given to Dr John Nackashi, Ms. Virginia Dixon-Woods and Ms. Teri Barcia at the University of Florida ; Dr. Peggy Greco Ms. Joanne Denicola, and Ms. Kelly McDonell at Nemours Children s Clinic ; and Dr Mary Pav an, Dr Michael Gallant, Dr Ernesto Ruas Ms. Cathy Conley and Ms Betty Graves at All C hildren s Hospital. I would also like to thank my committee, Drs. James Rodrigue Jaine s Algina James Shepperd, and William Williams for their general support and s pecific contributions Special thanks go to my chairper s on Dr Stephen Boggs who introduc e d m e to pediatric psychology and served as a role model and very patient and knowled g eable mentor during my entire graduate school career I also wish to acknowledge the extraordinary amount of help love, and encouragement I have received fron1 famil y, friend s, and t e achers throughout this long but ultimately rewarding process. I am esp e cially thankful to my mother Mabel Usitalo ; my late father, Richard Usitalo ; and m y s i s ter Su s an Us italo for their affectionate confidence and life-long support Finall y, I am mor e g r a t e ful than I can properly expre s s to my husband Paul Pitel and my children Jonathan S t e pl1 e n and Andrew for their love 11

PAGE 3

endless patience and encouragement, and for the n1any personal sacrifices they have made on my behalf 111

PAGE 4

TABLE OF CONTENTS pag e ACKNOWLEDGMENTS ... ... .11 ABSTRACT . Vl CHAPTER 1 INTRODUCTION . .. 1 2 LITERATURE REVIEW. . .. ... 8 Appearance . ....... . . 8 Stigmatization .... ....... . .... . . ... ... .. ..... Adjustment ... .. . ...... .. .. . .... . ..... ..... . S elf-Protective Strategies and Stigmatization. .23 30 43 3 s Y AND OBJECTIVES . ...... .... .... 5 3 4 METHODS .. . . .. ..... . . ..... ..... 5 9 Participants and Settings . 59 Measures .... ...... ....... . 65 Procedure. .72 5 RESULTS . 75 Description of Sample Variables . . . . . . . 75 Gro up Com pari so n s ...... .. ...... .8 5 Intercorrelati ons of Variables .87 Tests of the Hypotheses .. .. . .... . . .. .... 94 6 DISCUSSION .. .. .. . 114 P erceptions of Stigmati zati on ... . .. ..... .. . 114 Attributional Style . .... .. .. ... .. ... ... ... 120 Tests of the Hypotheses .... . ... ...... . 128 Limitatio ns and Strengths of the Study . . 15 1 Conclusion .... .... . . . . 153 lV

PAGE 5

APPENDIX A SOCIAL PERCEPTION QUESTIONNAIRE ... .. . ............ ... ................ ... 157 B PEER INTERACTION REPORT . .. ... ... . .............. .. . .. .... .. . . . .. . .. .. 159 C DEMOGRAPHIC QUESTIONNAIRE . ....... .... ........ . . ................. ........ 163 D SOCIAL PERCEPTION QUESTIONNAIRE (CHILD / ADOLESCENT VERSION) ITEM RESULTS ........ . .. ... ... .......... . ... ... ..... .. . . ... . ...... . .. .. 165 E SOCIAL PERCEPTION QUESTIONNAIRE (PARENT / GUARDIAN VERSION) ITEM RESULTS . . . .... . .... ....... ........... ...... .... ............ .... .. . .. 167 REFERENCES ..... .... ..... . .. ...... ........ ......... .. ......... ... .. ... ... ..... ......... 1 69 BIOGRAPHICAL SKETCH .... ... ... .... ........ ..... ... . ... .. . . .. ... ... . .... .... .. 189 V

PAGE 6

Abstract of Dissertation Presented to the Graduate School of the University of Florida in Partial Fu lfillm ent of the Requirements for the Degree of Doctor of Philosophy PERCEPTIONS OF STIGMATIZATION, ATTRIBUTIONAL STYLE AND ADJUSTMENT IN ADOLESCENTS WITH CRANIOFACIAL CONDITIONS By Ann Marie Usitalo May 2002 Chairperson: Stephen Boggs, Ph.D. Major Department: Clinical and Health Psychology This study investigated the relationships among demographic and condition variables, perceptions of stigmatization, attributio11al style self-concept, and social and behavioral adjustment in adolescents with craniofacial conditions (CFC) Of particular interest was whether attributional style acts to mediate the relationship between perceived stigma and outcome variables. Participants were 53 male and 30 female adolescent / parent dyads. Adolescents were between 13 and 18 years of age with a v i sible con g enital facial difference (cleft lip, cleft lip / palate craniofacial syndrome or other CFC sucl1 as hemangioma) and no developmental delay or profound physical disability. Independent variables were age, gender, number of functional impairments (hearing or sp e ech problems, learning disability), self-rated appearan ce (Self-Description Questionnaire-II / SDQ-II) and perceived stigmatization. Outcome variables were s elfc oncept (SDQ-II), social skills as measured by the Social Skills Rating System (SSRS-Student), extent of peer network Vl

PAGE 7

(Peer Interaction Record-PIR), and externalizing and internalizing behavioral problems (SSRS-Parent). Of the adolescents, 83% reported some experience of stigmatization in their social interactions; parents' and adolescents' perceptions were significantly correlated but adolescents reported significantly higher levels of stigmatization. Greater satisfaction with physical appearance and more optimistic attributional style were significantly and positively correlated with self-concept and social skills, and negatively correlated with behavioral problems. Higher perceived stigmatization was negatively correlated with self-concept and social skills and positively correlated with behavioral problems. Demographic (age, gender, SES) and condition-related variables (diagnosis, number of functional impairments) were generally not significantly predictive. However, learning disabilities were associated with fewer social skills, more internalizing problems, and a more pessimistic attributional style. Results show that a more positive attributional style mediated the relationship between perceptions of stign1atization and social skills, self concept, and internalizing behavior problems; it had no effect on either extent of peer network or externalizing behavior problems Botl1 practical and theoretical implications of these results are addressed, as are directions for fi.1rther research. VII

PAGE 8

CHAPTER 1 INTRODUCTION Craniofacial conditions represent one of the most commonly occurring birth defects. Clefts of the lip and/or palate alone occur in approximately 1 5 out of 1,000 births and the prevalence of all other craniofacial conditions together equals or exceeds that of cleft lip and/or palate (Eder, 1995). Craniofacial conditions are extremely heterogeneous in tem1s of severity of facial deformity associated features ( e g ., problems with speech and hearing mental retardation) and complexity of treatment. Children with craniofacial conditions and their families face an intricate set of challenges in coping with the rigorous treatment demands and psychological sequelae of having an obvious chronic disability Immediately after the birth of a child with a craniofacial condition parents must cope with their reaction to the facial disfigurement, increased care-giving demands ( e.g feeding problems) multipl e diagnostic procedures, and the reaction of friends and family to their child's appearance Treatment may extend from infancy through late adolescence or yo11ng adulthood and frequently involves numerous surgeries and hospitalizations extensive dental ai1d orthodontic work and therapy for speech and hearing impairments. Although multidi s ciplinary diagnostic and treatment advances have led to significant improvements in outcome, a child born with a craniofacial condition may have visible scars and facial distortions throughout life; a "nonnal" appearance is often impossible to achie v e Paradoxically the advancements i11 pla s tic surgery and orthodontic techniques I

PAGE 9

2 used to correct not only major disfigurements but also common, minor deviations from an "ideal" have likely l e d to a narrower definition of what i s an acceptable appearance and thu s accentuated th e facial diff e r e nces of childre11 witl1 c r a niofacial conditions. Given the natur e of treatment for craniofacial conditions and the importance of facial appearance in human interaction, it i s not s urpri s in g that parents and profe ss ional s are concerned about the impact of the condition on the cllild's or adolescent's psychological well-being. P syc holo g ical issue s associated with facial impairment have b ee n the focu s of considerable s tudy Howe ve r the nature of the research the questions asked, and th e methodolo g i es t1 se d ha ve s hift e d considerably over the years and parallel the developments in pediatric p syc hology as a whole. -Much r esearc h has focused on comparing children with craniofacial conditions to / normal controls on various p sy chological m eas ur es and is based on the dual assumptions that significant differ e nces do exist, and that facially di s fi g ured children will perform more poorly and appear more patholo gica l than would 11ormal children. However the overwhelming conclusion from this bod y of re sea r ch i s that children with craniofacial conditions, like other children with chronic and/or life threatening illnesses do not differ substantially from h ea lth y children in term s of di sease spec ific personality pattern s or pre va lence of seve r e e motional or adjustment disorders (Ed er 19 9 5 ; LaGreca 1990 1992 ; Lavigne & Raier -Ro utman 1992; Williamson 1996) Discr epant r es ult s have b ee n obtained on dimen s ions such as se lf-concept or self esteem. Som e s tudi es hav e fo und diminish e d se lf-conc e pt in children with craniofacial conditions (Arn dt Travis, L efe bvre Munro & Niec, 1986 ; B1oder Smith & Straus s, 1994 ; Broder & Strauss 1 989; Kapp, 1 979) w hil e others have s hown that they view

PAGE 10

3 themselves in a positive light and score similarly to normal controls on most standardized measures of self-concept or self-esteen1 (Kapp-Simon Simon, & Kristovich, 1992 ; Eder 1995; Leonard, Brust, Abraham s, & Sielaff, 1991; Williamson, 1996). The disparity in results has been attributed to methodological problems such as small samples and inadequate measures, or to differences in the samples or variables assessed (e.g., global versus specific self-concept). Despite sotne negative findings most children with craniofacial conditions do quite well in the face of difficult life situations, and as Drotar (1981) noted the problem s that do exist may often be interpreted as normal reactions to real life stressors Chronic illness or disability does, however function as a stressor that may, in combination with other variables contribute to increased risk for the development of various problems. There is evidence that children and adolescents with craniofacial conditions may be at higher risk for behavioral problems (Palkes, Marsh, & Talent, 1986; Pertschuk & Whitaker 1985; Schneiderman & At1er, 1984; Speltz, Morton, Goodell, & Clarren 1993) poorer school achievement (Brantley & Clifford 1979 ; Richman, 1976; Richman Eliason & Lindgren, 1988), and difficulties with social adjustment and peer relations (Birch & Lindsay, 1971 ; Kapp-Simon 1986; Pertschuk & Whitaker, 1985; Pillemer & Cook 1989; Pruzinsky, 1992). And, within the population of facially disfigured children and adolescent s, considerable variability exists in functioning with some individuals adjusting well and others adjusting poorly or inadequately It is also recognized that specific areas of functioning s uch a s social adjustment and peer relations, or developmental s tages (e g. adole s cence) may prove especially problematic (Clifford &

PAGE 11

Clifford 1986 ; Kapp-Simon et. al., 1992; La Greca, 1990 1992 ; Rubin & Wilkinson 1995). 4 Research has thus turned to exploring sources of vulnerability and resistance in children and their families and to delineatin g factors that differentiate those who do well from those who do not (Drotar 1997 ; National Advisory Mental Health Council, 1996 ; Wallander 1993 ; Wallander & Thompson, 1995; Wallander, Varni Babani, Banis, & Wilco x, 198 9). Efforts are being mad e to expand the scope of inquiry to include the complex network of individual characteristics (Shepard & Magni, 1995; Spelt z, Galbreath, & Greenberg, 1995) fainily and peer relations and environmental ( e.g ., SES) and medical factor s that structure the ex iste11ce of a child with a craniofacial condition. A more theoretically ba se d orientation, using ge neral frameworks such as the "risk and resistance" model propo se d by Walland e r et al. (1989), and/or specific theories from clinical, developmental per s onality and soc ial p syc hology as heuristic devices has been encouraged (Faier-Routman & Lavigne 1992). However most of tl1e research to date has rested either implicitly or ex plicitly on the assumption that a direct relationship exists betw ee n facial disfigwement and psycholo g ical problems Relatively little attention has been paid to mod e rating and mediatin g factor s or to theories that challenge this basic assumption. Problems in self-co11cept and adjustment in children with craniofacial conditions have traditionall y been attributed to th e ir abnormal facial appearance and the stigma associated wi th it Treatm e nt decisions re gar din g th e timing and extent of strrgical corrections a1e often mad e ba se d on b e lief s about the effec ts of the child's appearance on his or her adjustment. Ind ee d abundant evidence ex ists that physical appearance affects

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5 the way individuals are perceived and treated by others (for a review, see Eagly, Ashmore, Makhijani, & Longo, 1991 ). Unattractive individuals are viewed more negatively relative to attractive persons, most notably in terms of social desirability and people's expectations and judgments about their traits and capacities. In fact, it has been argued that appearance-based discrimination is severe enough to warrant protection under handicap law (Harvard Law Review, 1987). But research also shows that unattractive individuals are credited with mru1y positive qualities, and variables such as familiarity and similarity of interests may lessen the influence of the physical attractiveness stereotype (Berscheid & Walster 1974) These issues have not been explored in relation to children with craniofacial conditions. Furthermore, as craniofacial disfigurement typically involves more salient and significant disturbances of no1n1al facial structure than does ordinary "unattractiveness," at least until corrective surgery is performed it is not clear that findings from the literature on attractiveness are generalizable to this population Theories as to the effect of socia! stjgma on psychologicaJ adj:ustment have also -guided research in this area. Ii1dividuals with craniofacial conditions are, based on appearance alone, generally considered to possess a "discredited" condition that is stigmatized by society and thus seen by others as negative, unfavorable, or in some way unacceptable (Crocker & Major, 1989; Harvard Law Review 1987; Goffman, 1963; Reis & Hodgins, 1995) Several assertions are fundamental to stigma theory and the role stigmatization plays in the development of problems among people with facial disfigurements. First, if the world holds a negative view of a particular attribute, others will respond unfavorably to the person who possesses that attribute. This social

PAGE 13

6 disapproval is the hallmark of stigma. Second, the effects of st1ch negative social feedback about the self on the marked person lead to (a) the belief that the attribute carries a stigma and is a negative characteristic to possess and (b) diminished self-worth and self-esteem. Although traditional stigma theory assumes that social reactions to a discredited attribute are almost universally negative, s ome evidence exists that people may react positively or ambivalently to s tigmatizing conditions associated with illness or handicap as a result of societal pressure to be kind or helpful to those with disabilities (Bennett & Stanton, 1993; Carver, Glass, & Katz, 1977; Katz 1981 ; Weiner, Perry & Magnusson, 1988). Thus, variations in social feedback might contribute to the development of higher or lower levels of self-concept in individuals with craniofacial conditions Unfortunately, no one has addressed tl1e range of reactions individuals with craniofacial conditions may encounter Likewise although the relationship between perceived stigma and adjustment has been studied in other chronic conditions (Arnston, Drage, Norton & Murray, 1986; Hermaru1, Whitman, Wyler Anton & V anderzwagg 1990 ; Ireys, Werthamer-Larsson Koloch1er, & Gross, 1994; Ryan Kempner & Emlen 1980; Westbrook, Bauman, & Shinnar, 1992), no investigation has empirically examined perceptions of stigmati z ation and the impact of such perceptions on tl1e psychological health of facially disfigured people. --In attempting to explain the ability of stigmatized individuals to maintain a positive self-concept despite discrimination and diminished opportunities for success, Crocker and Major (1989) described three self-protective strategies that are "afforded by membership il:1 a group tl1at is stigmatized ... (a) attributing negative feedback to

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7 prejudice against their group, (b) selectively comparing their outcomes with those of members of their own group, and ( c) selectively devaluing those attributes on which their group typically fares poorly and valuing those attributes on which their group excels" (p.612). Despite evidence that these self protective strategies mitigate the effects of discrimination and negative social reactions in other stign1atized groups, little is known about their functioning among the group of individuals with craniofacial conditions Assessment of the effects of craniofacial conditions on the psychosocial adjustment of children and adolescents is extremely difficult As noted above, a number of variables may contribute to increased risk or resilience in any individual, and the task of understanding them and their interactions is da1mting. However it appears that progress in this area has been hampered by an over-reliance on certain theories and would benefit from a shift in approach. The research described here attempts to explore the relationship between perception s of stigmatization and the self-protective strategy of attribution on the adjust1nent of adolescents with craniofacial conditions J

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CHAPTER2 LITERATURE REVIEW "H e had but o,z e e y e and the popular pr ej udi ce runs in favor of two" --Charles Dickens Nicholas Nickleby Appearance Concern about the role of facial disfigurement in the adjustment of children with craniofacial conditions arises from a recognition of the social significance of facial appearance and the strength of the physical attractiveness stereotype. Research on appearance and its impact on everyda y life has focused on examining the multitude of inferential relations that exist between physical attractiveness and personal attributes, as well as the treatment accorded both attractive and unattractive individuals Ratings of Attractiveness The stability, reliability and universality of attractiveness preferences is remarkable. Children and adults from different cultures use comparable criteria in evaluating facial attractiveness very y oung infants can differentiate attractive from unattractive faces and an individual's perceived attractiveness remains stable over a period of years. Research in this area reft1tes previot1sly held assumptions that standards of beauty are culture-bound and transmitted to children through a long process of s ociali z ation. Infants as youn g a s 3 months of age c an discriminate between attractive and unattractive female faces and, in gen e ral app e ar to prefer attractive to unattractive faces. (Langlois et al ., 1987) Subsequent re s earch r e plicated this finding (Samuels 8

PAGE 16

9 Butterworth Roberts Graupner, & Hole 1994), and extended it to demonstrate that infant preference s for attractive faces ge nerali ze to adult Caucasian males adult African American females, and other infant s (Lang lois, Ritter Roggman & Vaughn 1991) Other s tudies support an emotional "liking" versus simple visual preference interpretation of tl1e differential looking time infant s showed toward attractive and unattractive faces (Langlois, Roggman, & Rieser-Dann e r, 1990 as cited in Langlois, 1995) E vidence also shows that a wide range of ethnic and cultural groups agree in their judgment s of facial attractiveness. High level s of agreement were found among African Am e ricans Hi s panic s, and Caucasians ratin g African-American, Hispanic and Caucasian infants and children whether the y rated tar gets from their own or other groups (Kleck, Richardson & Ronald 19 7 4 ; Stephan & Langlois, 1984 ). Cross-cultural ratings of attracti veness were also remarkabl y cons i s t e nt although not as highl y reliable as tho se obtained from individual s within the same cult11re (Langlois, 19 9 5; Barden 1990) The high level o f agreement across ages ethnic groups, and cultures suggests that certain structt1ral features may be univer sa lly perceived as attractive. Cunningham (1986) found that this is indeed, true He took preci se measurements of 24 facial features from photographs of 50 f e male faces and found that although ethnic differences do exist African-American, Asian and Ca uca sia n faces judged to be attractive share man y similar s tructural features. Significant agreement exists on ratin gs of attractiveness and the reliability of the se ratin gs within cu ltur es is extreme ly hi g h For example, Iliffe (1960) reported a s tudy in which attractiveness judgments were collected from more than 4 ,000 male and female raters from 15 t o 55 years old R e l ia biljty coefficie nts were in the very high 90s

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10 for raters of the same age and sex and in the high 80s and low .90s for dissimilar raters ( e g. teenage girls and nuddle-aged or older men) Differentia l Perceptions and Treatment of Attractive and Unattractive Individuals Substantial evidence from social and developmental psychology make it clear that facial appearance exe1is a marked and pervasive influence on judgments about and reaction s to others. Children and adults prefer attractive over unattractive individuals and attribute more positive traits, behaviors, and skills to more attractive people (for reviews see Berscheid & Walster 1974; Bull & Rumsey, 1988) Research with adu l t subjects In their classic study on the physical attractiveness stereotype, Dion, Berscheid and Waister (1972) concluded that "what is beautiful is good." College students rated facial photographs previously judged as low medium or high in physical attractiveness on 27 different personality traits using a 6-point bipolar adjective scale. They also ranked them on personality traits by indicating which stimulu s person possessed "the most" and "the least" of a given trait. Finally the students were asked to decide which stimulus persons were expected to lead better lives in ter1ns of personal happiness and occupational success Physically attractive persons were ascribed more favorable personality traits and successful life outcomes tl1an were unattractive subjects with one exception : attractive individuals were not expected to be better parents. This paradigm has guided many subsequent investigations of the "beauty is good" stereotype. Students' initial impressions and expectations of attractive and unattractive professional counselors has been shown to conforn1 to the physical attractiveness stereotype (Cash, Begley McGown, & Wise 1975) College students asked to judge the

PAGE 18

11 level of ''psychological disturbance" in their peers from tapes constructed to reflect low and high levels of maladjustment attributed greater disturbance and poorer prognosis to unattractive than attractive individuals (Cash, Kehr Ployson, & Freeman, 1977). And in a predictive study of the readjustment of discharged psychiatric patients attractive patients stayed 011tside of the hospital longer, and female patients judged as relatively more attractive were viewed as better adjusted by a community informant (Farina Burns, Austad, Bugglin, & Fischer, 1986) Physical attractiveness was still significantly related to days out of the hospital and the informant's rating of adjustment when age, education diagnosis, frequency of hospitalization, and predischarge adjustment were controlled Gross and Crofton (1977) tested and found support for a corollary to the physical attractiveness stereotype. They asked college students to rate the attractiveness of photos that were paired with either a favorable, average, or unfavorable personality description They concluded that, not only are attractive individuals assumed to have positive qualities but that individuals viewed as having positive qualities are judged as more attractive and thus "what is good is beautiful.'' Although the relationship between attractiveness and the attributions of positive qualities is strong, evidence suggests that some negative attributes are also associated with attractiveness In Tanke's (1982) study, male freshman rated attractive fe male students higher than unattractive ones on items measuring social and sexual excitement, but unattractive females were rated higher on items measuring modesty, concern for others and interpersonal sensitivity Both Dermer and Thiel (1975) and Cash and Janda (1984) explored the negative side of the physical attractiveness stereotype. Their results indicate that attractive people are perceived as more likely than unattractive people to

PAGE 19

12 possess the negative attributes of vanity and selfishness. And, in a more recent study (Agnew & Thomason, 1994) subjects were shown pictures of either an attractive or unattractive man who was fictitiously described as having been diagnosed HIV positive The attractive man was judged to be more to blame for lus condition than was the unattractive man. Among adults attractiveness influences one's desirability as a dating partner, -chance of employment, and even whether one will be convicted of a crime. In one study Walster Aronson Abrahams, and Rottman (1966) found that attractiveness was, by far the strongest predictor of liking among 376 randomly matched couples who evaluated their blind dates at a college dance It was also the strongest predictor of asking the partner for another date, regardless of the attractiveness of the person doing the asking. Intelligence and achievement were not significantly correlated with liking, and personality variables were only weakly correlated. Attractive individuals appear to maintain their advantage in social interactions even when their attractiveness is hidden from their interaction partner (Goldman & Lewis 1977). College students engaged in a 5 minute telephone conversation with opposite-sex partners whom they had never seen and then rated their partner's social skills and likeability Even when their appearance was not visible, attractive individuals received higher ratings of social skills and likeability. The authors suggested that differential socialization with attractive individuals having a history of more positive attention and thus more opportunities to develop social skills might account for the results

PAGE 20

13 Research suggests that numerous other benefits may accrue to attractive individuals: attractive defendants were less likely to be judged guilty and given milder punishments than unattractive defendants in a simulated jury trial (Efran, 1974); individuals were more likely to help an attractive than a unattractive person by mailing a "lost" graduate school application with a photograph attached to it (Benson, Karabenick, & Lerner 1976) and to provide them with greater quantities of assistance (West & Brown, 1975) In sum, attractive individuals are both perceived more favorably and are likely to experience significantly more positive social interactions, at least on initial encounter than are unattractive individuals. The enormous amount of research on the physical attractiveness stereotype led Eagly et al. (1991) to conduct a meta-analysis of published results. They concluded that although subjects ascribed more favorable personality traits and more successful life outcomes to attractive than tmattractive targets, the average magnitude of effect was moderate and the strength of the effect varied considerably from study to study. Physical attractiveness had its greatest impact on attributions of social competence an intennediate impact on adjustment, potency, and intellectual competence, and little impact on attributions of integrity and concern for others. Partial support for the assertion of a "dark side" to physical attractiveness was obtained: attractive people are perceived as n1ore vain and less modest than unattractive people but not more egotistical Feingold (1992) also analy z ed research on the physical attractiveness stereotype and obtained comparable results. Attractive people of both sexes are perceived as more sociable dominant, sexually warm mentally healthy socially skilled, and less modest than unattractive persons but not as possessing greater character. Neither meta-analysis I

PAGE 21

14 examined the effects of attractiveness on perceptions of individuals who are acquainted or included studies using children as either rater or target Thus the research on the physical attractiveness stereotype shows that attractive individuals are perceived more favorably and are likely to experience significantly more positive social interactions at least upon initial encounter, than are unattractive ..... individuals As more meaningful information about others may be difficult for individuals to discover due to the mobility and anonymity of modem life, the instantaneous effects of appearance may be greater than ever before. Initial impressions have been shown to significantly affect the dynamics of subsequent interactions and encounters (Bull & Rumsey, 1988) Research with children as subjects Childrens' and adolescents' physical attractiveness also affects how they are perceived by others the inferences made about their behavior and their interactions with other children and adults. Research shows that preschoolers and young elementary school children hold the same behavioral stereotypes as adults do, and believe that unattractive children are more likely to engage in troublesome behaviors than attractive children Langlois and Stephan (1977) found that 6and 10-year-old children rated attractive children regardless of ethnic origin as smarter, more likeable, and more socially skilled. These results together with those from Kleck et al. (1974) suggest that physical attractiveness is extremely powerful in determining peer preference ratings and behavioral expectations. Most studies deal with initial judgments about others who are not known to the subject and about whom little is known However, evidence indicates that attractiveness

PAGE 22

15 may be a powerful predictor of preference over a long period of time and not simply in the initial stages of interaction. Dion and Berscheid (1974) showed that, even in preschool children choose attractive peers as friends over unattractive ones In this study, peer nominations on a number of variables were obtained for 77 preschool children (ages 4-6) rated for attractiveness by adult judges Attractive children received, in general higher popularity ratings and were perceived as more independent than were unattractive children. Unattractive male children received more nominations for aggressive behavior, and unattractive children of both sexes received more nominations for being "scary" than did attractive children. This research suggests that similar stereotypes of attractiveness exist for acquainted as well as unacquainted children and that appearance is associated with specific child character attributes as early as the preschool years. Low to moderate correlations between physical attractiveness and popularity were also reported by Kleck et al. (1974). Vaughn and Langlois (1983) examined the relationship between attractiveness and peer relation during the preschool years. Two sociometric ratings (popularity and social competence) and one measure of attention received from classmates were obtained for 59 children previously rated for attractiveness. The attention each child received was not associated with attractiveness, but physical attractiveness and popularity were again significantly related. These fmdings parallel those obtained from research with adults: physically attractive individuals are generally preferred appearance is most significant in social interactions and the positive valence associated with attractiveness spreads to judgments of personal characteristic s.

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16 Differential treatment of attractive and unattractive children extends beyond peer interactions to adult-child interactions. Infants and children who are attractive tend to receive preferential treatment from adults. Pictures of attractive infants were looked at significantly longer than were pictures of infants rated as unattractive (Hildebrandt & Fit z gerald 1978, 1981 as cited in Barden 1990). Parke and Sawin (as cited in Tobiasen 1984) found that normal 2 day-old infants and neonates perceived as attractive were held and touched more than were unattractive newborns and neonates. Stephan and Langlois ( 1984) found strong and consistent differences in behavioral expectations for attractive and unattractive infants. Attractive infants were rated as more smart, likeable and good ; less active; and causing fewer problems to their parents. Given these data it is possible that differential treatment of attractive and unattractive infants begins almost immediatel y after birth ( In an early and influential study Dion (1972) gave undergraduate women photographs of attractive and unattractive children and a description of a misbehavior attributed to the child. The undergraduates rated the misbehavior of unattractive children more negatively than the same behavior by a more attractive child, and were more likely to perceive it as being part of the child's personality style In contrast misbehavior by attractive children wa s s een as an isolated incident. U nattractive children were also rated as dishonest unplea s ant and chr onically antisocial compared with attractive children The preference for attra c tive children extend s to nonsocial as well as social situations Clifford and Waister ( 1973 ) asked fifth grade teachers to rate unfamiliar children on the ba s is of identical report cards to which a small picture had been attached. Attractive children were rated as having greater academic ability, having better social

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17 relations and adjustment, and as more likely to become successful in life than unattractive children. Physically attractive children are generally favored over unattractive children in tetms of the discipline they receive (Dion, 1972,1974), grades on assignments and report cards (Felson, 1980 ; Salvia, Algo zz ine, & Sheare 1977), and expectations for academic achievement and social success (Adams & Cohen 1976) However, some discrepant results have been obtained and interactions with ge11der and race have been noted (Adams 1978; Adams & LaVoie 1974; Dion, 1974 ; Marwit, Marwit & Walker, 1978 ; Rich 1975). Although these conflicting results may be attributed to chance or variations in methodology it is likely that they reflect an interaction among appearance the attribute being evaluated and personal characteristics of the child or observer. Appearance affects inferences as to social competence significantly more than it affects inferences about intellectual competence and integrity. The variations among studies may also reflect the difficulty of reconciling competing stereotypes: the general association between attractiveness and positive personal and interpersonal attributes, and the specific association between intelligen c e and a relatively unattractive studious appearance. Ratings of Attractiveness and Adjustment Feingold's (1992) meta-analysis of the correlational research showed that physical attractivenes s was related to personality traits associated with social behavior such as loneline s s social anxiety and self-consciousness. It wa s not however related to the personality traits of sociability dominance, and mental health, or to the character-related traits of self-absorption and manipulativeness. For example, one study found a

PAGE 25

surprisingly weak relationship between attractiveness and self-esteem among adults: highly attractive individuals discounted the validity of performance-related praise and attributed positive evaluations to their attractiveness and not to their internal abilities or qualities (Major, Carrington, & Carnevale, 1984). Another interesting finding was that self-rated physical attractiveness was more positively correlated to a wider range of attributes than was other-rated physical attractiveness. Self-rated attractiveness may be more important than other-rated attractiveness ._.L_ -~ -~ 18 among children as well. Kenealy, Frude, and Shaw {1989) examined the relationship between attractiveness and psychosocial adjustment in 1018 children aged 11 to 12. Attractiveness ratings were obtained from the child's teacher, a panel of judges an interviewer, and the child. The child also completed the Piers-Harris Self-Concept Scale (Piers & Harris, 1984) behavior ratings were obtained from parents and teachers, and a popularit y score was derived from peer nominations in tl1e child's classroom. There was a strong positive relationship between self-rated attractiveness and self-concept, but a weak or nonexistent relationship between child's self-esteem and attractiveness ratings by teachers and judges. As teacher ratings of attractiveness were associated with positive child attributes ( e.g., popularity, confidence, leadersl1ip ), these results suggest that appearance as judged by others has an effect on children's beha vior and popularity but that self-esteem may be mostly associated with children's perceptions of their own -----.. e..~ attractiveness. r .....__ ------Similar results were obtained among a sample of children and adolescents with spina bifida (A ppleton et al., 1994; Lefebvre & Munro, 1986) On the other hand a study by Cooper (1993) found that other-rated physical attractiveness had an effect on the self

PAGE 26

19 esteem of learning disabled children Cumulative data suggest that appearance and self esteem are linked. However, the relationship is complicated and one's view of one's own appearance is at least, if not more, important than ratings by other people. As one researcher has noted "perhaps Beauty lies in the eye of the Beheld as much as in the gaze of the Beholder" (Lefebvre & Munro 1986 p 60) Appearance and Behavior Approaching the question of differential treatment from another angle, several researchers questioned whether unattractive individuals actually behave u diffyr~n~ly from -"-attractive i,n divig q qls and thus elicit negative social responses. And, if so is this because -there is a subtle and unidentified difference in biological or neurological functioning among people with different levels of attractiveness or is it a reflection of different socialization experiences including the misinterpretation of others' behaviors? Langlois and Downs (1979) observed peer interactions of 3and 5-year-old children who varied on ratings of attractiveness. They found few differences in affiliative behaviors but observed an increa s e in hyperactivity among unattractive children. Most interesting were their findings on aggression: no differences were found in 3-year-olds, but 5-year-old unattractive children displayed more aggression toward their peers than did attractive children. They hypothesized that age differences in levels of aggression are attributable to the activation of self-fulfilling prophecies: unattractive children may be negatively stereotyped and learn over time the behaviors associated with unattractiveness. Kleck and Strenta (1980) designed two ingenious experiments in which subjects were randomly assigned to one of three conditions: asthma, epilepsy, and facial disfigurement. A large "scar" was applied to subjects i11 the facial disfigurement

PAGE 27

20 condition using theatrical make-up Under the guise of "conditioning" the scar to make it more realistic, it was surreptitiously removed. Thus the subjects thought they had a facial disfigurement when in fact there was no change in their appearance. After interacting with another person these subjects were asked to comment on those aspects of the other person' s behavior that appeared linked to their appearance. Subjects who thought they were disfigured (but were not) perceived a strong reaction to their facial appearance in the other person. The results suggest that an expectancy / perceptual bias mechanism may influence the social behaviors of facially disfigured individuals Thus differences in behavior may result from individuals with craniofacial conditions molding their actions to fit the negative stereotypes of others and/or changing their behavior to meet their expectatio11s about how others will act and thus eliciting the behaviors they expected Facial Disfigurement, Behavior, and Social Interaction An essential question of course, is whether facially disfigured individuals elicit the same judgments and social responses as do unattractive individuals Although researchers and clinicians hav e noted that patients complain of discrimination, J easing, difficulties making friends and problems in initial encounters with strangers (Bull & Rumsey 1988; Lefebvre & Munro, 1986; Pertschuk & Whitaker, 1984), little direct, empirical evidence exists about the attitudes of nondisabled children to their peers with facial disfigurements Most of the research with children is based on judgments of drawin g s and pictures of childr e n with cleft lip and/or palate that are assumed to be generali z able to children with other craniofacial conditions. As many of the other conditions involve greater disfigurement, research on children with cleft lip / palate may

PAGE 28

underestimate the negative perceptions and interactions experienced by children with more extensive disfigurement 21 In a series of studies examining children's reactions to disabled or handicapped peers Richardson and colleagues (Richardson, 1970 1971, 1983 ; Richardson & Royce 1968) presented children the following pictures: (1) child with no disability (2) child with crutches and a brace on left leg (3) child in a wheelchair, ( 4) child with left hand missing, (5) child with facial disfigurement, (6) a child with obesity. The children were then asked, "Who do you like best," and rankings of preference were obtained. Across age and cultural groups, the rankings were remarkably consistent and clearly supported Richardson's conclusion that nondisabled children preferred nondisabled peers The rankings were also consistent across studies, with the facially disfigured child consistently ranked next to last just above the child with obesity Recognizing that children respond to other children in a specific social context, Harper and colleagues (Harper, 1995 ; Harper, Wacker & Seaborg Cobb, 1986) investigated the impact of situational characteristics upon rankings. They altered Richardson's methodology slightly presented different pictures eliminated the picture of the child without a hand, and placed questions of preference in the context of various social and play situations ( e g., "Who would you like to go to a movie with?'' "Who would you like to ride a bike with ? "). They found that rankings varied by type of disability pictured, sample tested, and the type of activity specified. For example, a child in a wheelchair was least likely to be chosen as someone to "ride a bike with ." Children in the United States unifo1mly demonstrated low preference for cosmetic disability (facial disfigurement and obesity) versus orthopedic disability. This was not true for children

PAGE 29

from different cultures (Middle East North Africa Asia) Children in less developed countries where greater emphasis is placed on functional survival, showed a low preference for mobility impairments In 1nore developed countries, emphasis upon thinness and appearance may contribute to the low preference for obese and facially disfigured children. 22 When the rankings were summed over all conditions, school-aged children were less likely to choose a child with a facial disfigurement as the preferred friend or playmate than any other handicapped children Harper and colleagues (1995) estimate that less than 1 % of the 1,000 children interviewed selected the child with the facial disfigurement as most preferred. Their assessment of the attributions and reactions to facial disfigurement what the participating children actually said about the various conditions was revealing They found that the children engaged in an "illogical spread" of negative reactions assuming that a problem in one area leads to deficiencies in other areas (e.g "can't play because of her mouth," "wouldn't know how to play the game"). They also noted that many of the children's comments expressed quite directly their feelings about children with facial disfigureme11ts (e.g., "awkward", "scared", "dirty") and their perceptions about their appearance ( e g., "cat lips" "looks bad"). Harper interpreted these results as indicating the magnitude of stigmati z ation associated with craniofacial conditions and the potential difficulties in social interactions for children with craniofacial conditions In other studies ratings of facially disfigured children based upon photographs have been obtained Schneiderman and Harding (1984) asked grade school children to rate color slides of children with normal facial features and those with repaired unilateral

PAGE 30

and bilateral clefts of the lip Photographs of children with clefts were rated more negatively on several measures including boring, stupid, sad, dirty, mean, and bad. Tobiasen ( 1987) used two versions of the same photographs In one version, the child was pictured with his/her cleft and in the other version the cleft was corrected The subjects' ratings of children with facial deforrnities were consistently negative, and pictures of girls with facial defortnities were judged more negatively than pictures of boys. 23 Several researchers studied the effects of facial conditions upon teacher expectations and employment opportunities Richman (1978) showed that teachers underestimated the intellectual ability of the cleft lip / palate children judged to have severe facial disfigurement. Academic achievement in children with facial clefts and normal intelligence is often lower than expected on standardi z ed tests and on parents' and teachers' reports (Brantley & Clifford, 1979; Tobiasen, 1984). Evidence exists for low academic / intellectual self-concept as well (Broder & Strauss, 1989). Given Richman's findings, it may be that many children with low academic achievement and self-concept suffer from the self fulfilling prophecy of low teacher expectations. Scheuerle, Guilford, and Garcia (1982) found that employers responded negatively to an individual with a cleft lip / palate When a speech disorder was paired with the cleft lip / palate, the negativity of judgments increased The accumulated evidence suggests that facial anomalies are a stigmatized condition: individuals with a craniofacial condition are viewed more negatively by society and are likely to experience instances of prejudice and discrimination

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24 Stigmatization Introduction Stigmatized individuals or groups are not defmed by their possession of an attribute that makes them different from others but by the devaluation society places on the attribute and by extension, on those who possess it. Numerous writers (Arntson et al., 1986; Dell, 1986; Goffman, 1963) have emphasized the social nature of stigma that it can be defined only in te11ns of a dynamic relationship between an individual and society. An attribute becomes stigmatized when it interrupts the normal flow of interaction and ... an individual who might have been received easily in ordinary social intercourse possesses a trait that can obtrude itself upon attention and turn those of us whom he meets away from him, breaking the claim that his other attributes have on us (Goffman, p.5) Goffman di s tinguishes between discredited and discredible conditions. A discredited condition is one with visible cues while a discredible condition presents no visible cues but, if it is revealed the individual may be stigmatized Epilepsy, mental illness, and being HIV-positive are examples of the latter ; facial disfigurement is a classic example of the former. Goffman (1963) argues that stigmatization requires the acceptance and internalization of society's devaluation the stigmatized person must believe that he or she has a discredible condition and feel some shame about possessing it It is this last proposition that implicitly fuels the extensive body of research on self-esteem and self concept in children and adolescents with craniofacial conditions, and the expectation that society's negative views are incorporated into one's sense of self and self-worth Psychological behavioral, and social problems may stem either from diminished self

PAGE 32

concept or self-esteem, or more directly from the accumulation of negative experiences and limited opportunities. 25 Many researchers have tried to identify the variables most central to understanding stigmatization. Heimann et al. (1990) noted that current conceptions have dichotomized stigma into two types: enacted stigma, or actual instances of discrimination; and felt stig111a, or the perception that others, whether in direct or subtle ways, devalue the person and/or express a reluctance to interact with them but do not engage in explicit discriminatory behavior Jones et al (1984) outlined six dimensions they believed most critical for understanding the impact of a given stigma on social interactions. These are: (1) concealability; (2) pattern of change over time and ultimate outcome; (3) disruptiveness, or the extent to which the stigma adds to the difficulty of the interaction; ( 4) aesthetic factors, or how pleasing or distasteful the stigma is to the senses; (5) origin of, or responsibility for the condition; and (6) peril posed to others by the condition Stigma theory postulates that the greater the number and/or intensity of these attributes in any given person or condition the more potent the stigma associated with them and the greater the risk for psychosocial difficulties. Research discussed previously emphasized the negative judgments and evaluations made of individuals with craniofacial conditions based upon photographs, drawings, or videos. Additional evidence for stigmatization comes from studies of the behaviors disp l ayed toward those with facial disfigurements Goffman (1963) noted that avoidance, anxiety, uncertainty as to how to interact, and invasion of privacy by staring and asking intrusive questions characterize encounters between stigmatized individuals and the general public. In a series of encounters with 450 members of the general public,

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26 Rumsey, Bull and Gahagan (1982) found that people stood significantly further awa y from a confederate in three disfigured conditions ( facial birthmark, facial scarring, and bruising consistent with a traffic accident) than in a nondisfigured condition. Subjects also chose to stand significantly more often on the confederate's nondisfigured side ( the disfigurement only appeared on one side of the confederate's face). Finally if facially disfigured individual s attempted to engage others in brief encounters on the street, many member s of the public tried to avoid them by increasing their pace averting th e ir gaze, and attempting to ignore their pr ese nc e (Rumsey, as cited in Rumsey & Bull 1986 ; Bull & Rumsey 1986) Other researchers have noted that members of the general public stare quite openl y at disfi g ur e d people (Macgregor, as cited in Bull & Rumsey 1988). Stigmatization in Epilepsy There is a paucity of empirical research on the experience of stigmati za tion and its perceived impact among individuals with craniofacial conditions However the stigma associated with epilepsy ha s been investigated and the findings appear relevant to understanding the experience of facially di s figured individuals. Although the two conditions di ffe r on one of the attributes (i.e., concealability), they are comparable on most of the remaining. Individuals with epilepsy and craniofacial conditions are not (usually) h e ld r es ponsible for their condition nor thought to pr ese nt any risk to others. Furthermore, th e course over tim e, di sru ptiveness and aesthetic factors vary considerably within each condition. Scrambler and Hopkin s (as cited in West, 1986) examined the meaning of epilepsy to p eo pl e in terms of stigma, stigma strategies, stigm ati za tio~ and consequences for identity. They stu died 94 adult s with epilepsy and found that only a minority r eca lled

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27 any instances of stigmatization at all, a pattern contrasting markedly with the pervasive sense of shame and fear of negative reaction that made up their sense of felt stigma. As a result the authors proposed that the lives of people with epilepsy are characterized less by "enacted stigma" than by "felt stigma," a concomitant sense of shame about their condition and a predisposition toward negative interpretations of other's behavior. A more mixed view of the experiences associated with epilepsy emerges from Schneider and Conrad's (1980) study While some subjects reported a sense of shame stigmatization, and a concomitant desire to conceal their condition, others did not. Many subjects were willing to selectively reveal they had epilepsy and noted that their willingness to do so wa s related to what others, as "stigma coaches" had taught them to do. In their work, Schneider and Conrad emphasi z ed the role of parents as "stigma coaches," noting that the greater the parents' sense of shame, the less likely their offspring were to disclose any information. Additional evidence that epilepsy is not invariably experienced as stigmatizing was found in the Ryan et al ( 1980) study of 445 individuals with epilepsy. Using a quantifiable measure of perceived stigma they created the investigators found considerable variation in the amount of stigmatization experienced. In addition, the finding that the relationship between seizure severity and perceptions of stigmatization due to the disorder was mediated by other individual characteristics lent support to their proposed sociopsychological model of stigma in epilepsy Two other studies empirically examined the role of perceived stigma and psychological disturbance in individuals with epilepsy In the first (Arnston et al., 1986) perceived stigma was significantly and meaningfully correlated with attitudinal variables

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28 (helplessness, self-esteem, and life satisfaction) and measures of psychopathology (depression, anxiety, and somatic symptoms) in members of epilepsy organizations througl1out the country. Using both quantitative and qualitative measures, they concluded that their respondent's social-psychological environment was more important than the physical characteristics of se izure activity. Further1nore, actual seizure frequency was less important to a person with epilepsy than the perception of how severely the seizures affect one's life Possible limitations of the study include a nonrepresentative sample (all were active in epilepsy groups), the inability to infer causality from the correlations ( does the perceived stigma lead to psychopathology or vice versa?), and inaccurate reporting of sei z ure rates. Hermann et al. (1990) also found a relation s hip between self-reported feelings of stigma and psychopathology Of the seven variables they found predictive of psychopatholo gy, six were psychosocial in nature (perceived stigma, elevated number of stressful life events, poor adjustment to epilepsy, financial stress, vocational problems and an external locus of control) Earlier onset of epilepsy was the only neurological variable associated with psychopathology Number, typ e, and duration of sei z ures were not significant Despite observations (West 1986) that the attitude of parents appears to be crucially related to the extent of the child's "felt" stigma and the strategies adopted to manage it, little research exists on families and stigma. West (1986) conducted a qualitative inquiry of the relationship among parents experience of ''felt'' stigma the strategies they adopted to manage it and their effectiveness in helping their child achieve a "normal" identity Loosely structured int erv iew s lasting between 2 and 4 hours were

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29 administered to 20 families on at lea s t two occasions over the course of about 1 year. Due to the nature of the research and the small sample, the author presented only tentative conclusions Nonetheles s his fmdings concurred with those of other studies in recogni z ing the importance of felt stigma in adjustment to epilepsy. The majority of parent s (15 of 20 ca s es) indicated a perception of felt stigma and engaged in various information management strategies In general those who experienced stigma most strongly were most likely to practice concealment and to maintain high levels of felt stigma regardless of the success of concealment. Selective disclosure appeared to reduce perceptions of felt stigma. Furthermore those parents committed to a policy of concealment minimi z ed their children's participation in activities outside of the family As isolation and restriction of activities are not u s ually thought of as conducive to nonnal development West noted that the child with epilepsy may experience detrimental effects as a direct result of the successful use of a strategy chosen for the very purpose of avoiding negative outcome Westbrook et al (1992) explicitly tested a conceptual model grounded in stigma theory to investigate the as s ociation of stigma to self-esteem among adolescents with epilepsy. The model hypothesized relationships among several characteristics of epilepsy (seizure type seizure frequency and duration of epilepsy), perceived stigma management of disclosure and self-esteem Sei z ure type and frequency predicted low self-esteem as did th e belief that epilepsy i s stigmatizing Younger subjects (12-16 years old) had s ignificantl y hi g her s tigma s cores than did older subjects However most of the subjects did not report feeling stigmati z ed by their condition. In explaining the negative findings the researchers noted that stigma theory does not clearly incorporate personal

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30 subject characteristics such as per s onality traits self-perceptions, cognitive evaluations or coping styles that may buffer or accentuate the effect of condition-related attributes on perceived stigma and management of disclosure. Stigma theory as traditionally formulated postulates strong and direct relationships between variables: the greater the number and severity of stigma-related dimensions, the more intense the stigmati z ation and negative its effects. However the accumulated epilepsy and appearance research suggests that the relationships are complex and mediat e d by characteristics of the individual such as personality traits and coping styles, the particular social situation or the social group within which the individual is acting For example Ireys et al. (1994) assessed how selected condition cl1aracteristics ( e g ., indices of severity symptom predictability, prognosis, age of onset, and visibility of condition) increased the risk of psychological symptoms in a sample of 286 young adults with chronic illness. They concluded that perceptions of impact mediate the association between selected risk factors and mental health and should be seen as a type of cognitive appraisal that shapes the relationship between condition characteristics and mental health Similar "self-protective strategies" are presumed to mediate the association between stigmati z ation and self-concept in a variety of social groups or categorie s of people As noted previously no research has directly examined the subjective experiences of individuals with craniofacial conditions with regard to perceptions of stigma As a result, stigmati z ation's effect on adjustment has generally been presumed to be negative and direct with no mediating and few moderating variables ( e g age and sex) blunting its impact.

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31 Adjustment Findings from the literature on stigma and physical attractiveness have contributed to concerns that children and adolescents with craniofacial conditions will experience emotional and social dysfunction as well as poor self-concept The prediction of psychosocial difficulties was grounded in the application of social psychological theories on prejudice discrimination and self-esteem to this population For example the theory of "reflected appraisals" posits that children and adolescents with cranjofacial conditions are likely to incorporate society's negative view of individuals with facial disfigurement into their self-concept. Research on self-fulfilling prophecies suggests that mistaken beliefs about these children's capabilities would lead to expectations by others of poor performance and differential behavior toward them. As a result, children with craniofacial conditions would come to behave and view themselves in a manner consistent with these negative stereotypes. Fears that discrimination would result in limited opportunities for developing a sense of competence in many domains and dimini s hed efficacy ba s ed self-esteem added to apprehensions about the social and psychological impact of craniofacial disfigurement. Research on the adjustment of children a11d adolescents with craniofacial conditions has concentrated on self-concept or self-perception, parent and teacher ratings of behavior and social adjustment. Parent and self-ratings of appearance and speech have been used to as s ess both levels of satisfaction with treatment outcome and the relationship if any, between appearance and adjustment. Most studies have focused on children and adolescent s with cleft lip and/or palate as they comprise the vast majority of

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32 patients with craniofacial conditions. It is not clear whether data gathered from children with cleft lip and/or palate can be generalized to children with more severe conditions. Self-concept Self-concept, or the perceptions one has of oneself, exerts a profound influence on behavior and much research has focused on understanding its development and functioning More complicated than it intuitively appears, self-concept includes both global feelings of self-worth and judgements about oneself in specific domains such as academic ability social skills, and physical appearance (Bracken, 1992; Eder, Gerlach, & Perlmutter, 1987; Harter, 1986; Marsh, 1986,1993). Thus, one may possess a relatively high global self-concept and still evaluate oneself negatively on a particular dimension. Self-esteem is often considered the evaluative component of one's self-concept, and self image, which comes from social interactions, is thought of as the internalization of others' reactions to one's self and behavior. Self-concept, in all its manifestations, plays a critical role in psychological functioning (Taylor & Brown 1988) and adjustment, and concerns about possible disturbances in self-concept among children with craniofacial conditions have been prominent. Overall the research on self-concept has produced few significant differences between children with craniofacial conditions and typical children, and remarkably little evidence for diminished global self-concept. Kapp (1979) used the Piers-Harris Self Concept Scale (Piers & Harris, 1984) to measure the self-evaluations of 34 cleft lip and/or palate adolescents (ages 11 to 13) with a matched normative group. No difference in global self-concept (total scores) was obtained, although on specific subscales, girls

PAGE 40

33 with clefts reported greater anxiousness and general unhappiness and dissatisfaction than did same-sex controls Brantley and Clifford (1979) actually found that adolescents with cleft lip and/or palate reported a higher level of self-esteem than did obese adolescents or adolescents with no identified problems They administered an extensive battery of behavioral adjustment instruments to three groups of 10 to 18 year-old adolescents. Of 18 body image and 15 self-concept variables, significant group differences were found on only 2 : self-esteem and perceived acceptability by parents at birth. Adolescents with clefts reported lowered perceived acceptability by parents at birth. There were no differences among the groups on the body-image variables. The authors suggested that the experience of coping successfully with a cleft and perceptions of unacceptability resulted in heightened self-esteem in these subjects Adolescents with cleft lip and/or palate again scored at or above the nor1n for global self-concept in another study (Leonard et al., 1991) using the Piers-Harris Children's Self-Concept Scale Further analysis showed an interaction between gender and age : adolescent girls experienced a more negative self-concept in comparison to younger girls and adolescent boys experienced higher self-concept compared to younger boys. These results concurred with Brantley and Clifford's (1979) and Kapp's (1979) findings of high overall self-concept combined with problems in specific domains or among particular age-gender combinations The self-concept of children (8 to 11 years) was also found to be at or above nonnal in the study by Leonard et al (1991), a result discrepant from other studies. For example Kapp-Simon (1986) compared the self-concept of primary school-age children

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34 ( 5 to 9 years) with clefts to a control group of nonaffected peers using the Primary Self Concept Inventory (PSCI) (Muller & Leonetti, 1974) The children with clefts reported a lower global self-concept and perceived themselves as less socially adept and more frequently sad and angry than their peers. Howe ver, although the differences in self concept score were significant, only 54% of the group with clefts scored in the "at risk" range for global self-concept compared to the 74% classified as "at risk" on the social self domain. Broder and Strauss (1989) also used the Primary Self Concept Inventory to investigate the impact of visible versus invisible defects on children's self-concept. They divided their sample of 6 to 9-year-old children into three groups -cleft lip only cleft lip and palate, and cleft palate -and compared their scores to those of peers with no conditions All groups with clefts scored significantly below the controls and in the "at risk" range on the total se l f-concept score, both factors of the social domain and the physical factor of the per sona l self-domain. Thus, while there is some inconsistency in results, one perva.sive finding is that global self-concept is marginally, if at all, affected by having a craniofacial condition. However, specific domain s of the self concept appear vulnerable, and interactions of age and gender may be signi ficant. Some of the discrepancies can be attributed to the differences in age groups and measures The focus on either children or adolescents is a significant strength as it acknowledges developmental differences in self-concept and adjustment to facial disfigur eme nt (Damon & Hart, 1982; Speltz, et.al., 1995; Speltz Greenberg, Endriga, & Galbreath 1994).

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35 Psychological and Behavioral Adjustment Several studies have focused on parent and teacher reports of behavioral adjustment (Richman 1976; Schneiderman & Auer, 1984; Tobiasen & Hiebert, 1984). In an early review of the literature on the intelligence, achievement, and psychological adjustment of children with clefts of the lip and/or palate, Richman & Eliason (1982) noted that research suggested that children with clefts were more inhibited than their peers without clefts but displayed no evidence of significant psychopathology Richman (1976) gathered teacher Behavior Problem Checklist (BPC) reports for 44 children with clefts and 44 matched controls ages 9 to 14. Children with clefts had significantly higher scores on the internalizing scale of the BPC than controls but did not differ on the externalizing scales. More introversion or internalizing behavior problems has been reported in other studies as well (Pertschulk & Whitaker,1985; Pillemer & Cook, 1989). In a post-surgical study of 25 children, Pillemer & Cook found significant problems with introversion and peer relations However, these problems emerged on projective measures only. Ratings on objective measures were within normal limits. Pertschulk & Whitaker studied 43 craniofacial patients aged 6 to 13 years using a combination of standardized measures and structured interviews They found the patients to have poorer self-concept, greater anxiety, and, as rated by parents and teachers, more negative social encounters and problematic classroom behavior than matched control children. Emphasizing that the children with craniofacial conditions were not functioning in a psychosocially deviant range the authors noted their results indicated limitations rather than marked deficits. No consistent pattern of psychosocial problems was found within the whole group, and there

PAGE 43

were no significant differences among children with different diagnoses. However, a subset of patients with problematic responses showed a pattern of behavioral inhibition and limited social contacts and/or frequent negative social encounters. 36 Schneiderman and Auer ( 1 984) u sed both parent and teacher reports on the Behavior Problem Cl1ecklist (BPC) to evaluate the adjustment of 58 child r en with cleft lip and palate from preschool through grade nine. They found that very young children of both sexes and girls in junior high school tended to be categorized as having "personality problems," whereas elementary and junior high schoo l boys were more likely to be seen as having "conduct problems Parents perceived more conduct problems among males than did teachers However in Tobiasen and Hiebert's (1984) study of 2 to 12 year old children parents of chi ldr en w ith facial clefts reported the same frequency of conduct problems as did parents of chi ldr en without c left s. Problems in family interactions, school productivity, and peer relationships were also found in six of ten chi ldr en ( ages 5 -15 years) with mixed craniofacial conditions assessed by Palkes et al (1986) This study explored the effects of the attitudes of parents upon the child's well being Parental attitudes toward their chi ldr en were favorable, and most expected their child to have positive self-esteem. Thus, the high percentage of chi ldr en with behavioral problems was startling and r aised the possibility that children with conditions other than clefts may differ in their adjustment. However, the extremely small sample si z e prohibited any definitive conclusions As with se l f-concept it is clear that children and adolescents with craniofacial conditions do not display any sing l e pattern of behavioral difficulties. The absence of consistent group findings characteri z ing much of the literature has l ed some researchers

PAGE 44

37 to investigate differences among children with facial disfigurements. Both clinical / anecdotal (Pruzinsky, 1992 ; Tobiasen, 1995) and research (Birch & Lindsay 1971 ; Clifford & Clifford, 1986; Pertschuk & Whitaker, 1984; Richman, Holmes, & Eliason, 1985; Starr & Heiserman, 1977) data show that, within the craniofacial population some children and adolescents have poor adjustment, while others adapt quite well to their condition. Differences in Adjustment Starr and Heise11nan's research (1977) showed a relationship between acceptance of disability and self-esteem (Linkowski, 1971) among adolescents with clefts of the lip and/or palate Those adolescents who indicated the hlghest level of acceptance on the Scale to Measure Acceptance of Disability had higher self-esteem scores on the Self Esteem Scale (Simmons, Rosenberg & Rosenberg 1973) and scored significantly lower on aggression activity level somatization, and sleep disturbance as measured by the Missouri Children's Behavior Checklist (Sines Pauker & Sines, 1971). There was no relationship between type of cleft and attitude toward their disability. The authors concluded that complex psychosocial issues are more important than physical severity in the acceptance of one's facial disfigurement and that adolescents with difficulty accepting their disability are at high risk for disturbances in behavior and self-concept and may benefit from psychosocial interventions. Perceptions of educational and social functioning among adolescents with cleft lip and palate varied in accordance with their personality adjustment as measured by MMPI scores (Richman 1983) Significantly more adolescents with abno1mal MMPis felt dissatisfied with their educational and social functioning than did those with normal

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38 MMPis. Groups of well and poorly adjusted adolescents with cleft lip and palate based on parent Behavior Problem Checklist (Quay & Peterson 1969) ratings, were also compared in the Richman et al. 1985 study. They examined the relationships among self ratings of facial appearance, teacher ratings of appearance, and parent and child ratings of adjustment as measured by the BPC. While the ratings of adolescents in the well-adjusted group agreed with those of parents and teachers, adolescents in the poorly adjusted group agreed only with parental ratings on the conduct problems dimension of the BPC They rated themselves as having significantly fewer internalizing personality problems than parents and as significantly more attractive than teachers The authors hypothesized that poorly adjusted individuals use denial of facial disfigurement as a defense mechanism and that their social withdrawal is a consequence of their denial However, adolescent's self-ratings on all three measures were not significantly different between the groups, and those in the poorly adjusted group had more severe facial disfigurement. Thus, although differences in adjustment exist, the relationship among severe facial disfigurement, adjustment, introversion and a greater use of denial remains ambiguous. Effects of specific condition related variables (appearance, speech, hearing) on adjustment have been explicitly examined in several studies. As noted above some researchers found no significant differences in adjustment among children with various craniofacial malformations or levels of attractiveness (Kapp-Simon, 1986; Pertschuk & Whitaker 1985 ; Starr, 1980; Starr & Heise1rnan 1977). Others have asserted that those children with major defor1nities (not just cleft lip and/or palate) or who are less attractive do more poorly (Pillemer & Cook 1989; Pruzinsky, 1992; Richman, et al 1985). Padwa, Evans, & Pillemar (1991) examined the effect of symmetric and asymmetric

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39 (hemifacial microsomia facial asymmetry, unilateral coronal orbital synostosis, and hemihypertrophy) craniofacial deformities and functional impairments (hearing and speech problems) on measures of depression social/emotional development and behavior. Those with symmetric defonnities scored significantly poorer on all measures of adjustment but differences among the groups with or without functional impairments were not significant. Williamson (1996) also found that speech, hearing and level of attractiveness were not related to behavior problems or self-esteem. These results were somewhat surprising given evidence that speech and hearing problems can also have a negative influence on adjustment (reviewed in Williams, 1996) and assumptions about the additive effects of having both functional and visible impainnents. Appearance and Adjustment Although the relationship between severity of facial disfigurement or level of attractiveness and adjustment is not clear both patients and professionals remain concerned about facial appearance (Broder Smith, &Strauss, 1992; Strauss, Broder, Helms, 1988; Noar 1991) and many surgeries are perfo1med for cosmetic reasons alone. Pre-and postoperative comparisons of facial appearance and adjustment have generally shown that patients perceive improvement in both areas. In one study (Lefebvre & Barclay, 1982) a large percentage of patients reported better psychosocial adjustment after surgery to improve their appearance, suggesting that improved appearance may have had a beneficial effect. Arndt et al. (1986) found that patients rated their appearance self-esteem, and social acceptance and adeptness as noticeably improved after surgery. As independent raters observed only relatively subtle changes in appearance, the authors surmised that the patients' improved self-evaluations increased their level of social

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40 comfort and thus enhanced their quality of life. Similar results were reported by Tobiasen and Hiebert (1993) in their study of children and adolescents with facial clefts : self-ratings, not peer ratings of severity of impairment strongly predicted positive psychosocial adjustment in seve ral areas including global self-esteem, positive mood, and social competence When evaluating changes in appearance, it is important to remember that impressions of individuals are formed by factors other than physical attractiveness including vocal qualities gesturing, and other social skills (Canady, 1995). Furthermore, patients' judg1nents of outcon1e appear to depend as much on their expectations as on any objective criteria. Social Adjustment and Peer Interactions Healthy social interactions are essential to good adjustment and satisfaction with one's life. Several retrospective studies (Birch & Lindsay, 1971; Bjomsson & Agustsdottir, 1987; Heller et al., 1981) of long-term adjustment in patients treated for craniofacial conditions noted specific problems in adult social functioning. For example Heller, Tidmarsh and Pless (1981) studied 96 young adults (ages 18 to 28) born with clefts and 56% of all respondents expressed some degree of dissatisfaction with their social interactions social activities, and number of friends As patterns of social interaction are known to begin early in life and remain relatively stable (Rubin & Wilkinson, 1995), concerns about social and peer adjustment of children and adolescents with craniofacial conditions are expressed in almost every paper written. Unfortunately, one consistent fmding is that the probability of problems in social and peer functioning is quite high and the internali zing beha v ioral problems often associated with facial disfigurements include many that are social in nature: shyness, anxiety hypersensitivity

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41 self-consciousness social inhibition and negative self perception (Bull & Rumsey, 1986; Kapp-Simon et al 1992 : Rubin & Wilkinson, 1995; Tobiasen 1995; Tobiasen & Hiebert 1993). Problematic social interactions are emblematic of stigmatization. Goffman (1963) noted that the stigmati z ed can never be certain about how they will be received and thus may avoid contact with nonstigmatized individuals However, a desire for social interaction may remain and this desire is what distinguishes social withdrawal or avoidance and dysfunctional shyness from the personality dimension of introversion (Cheek & Melchior 1990). And as Rubin and Wilkinson (1995) noted, the social withdrawal and anxiety that may predict peer rejection for craniofacial handicapped and other stigmatized children is different from the aggression that is associated with rejection for unattractive children. The social experiences of individuals with craniofacial conditions may be organized into the three components of affect, cognitio11, and observable behavior. Affective and cognitive dimensions include the symptoms noted above : anxiety self deprecating thoughts self-consciousness and hypersensitivity to evaluation. Direct observational data (McGuire Kapp-Simon & Simon as cited in Kapp-Simon, 1995) and s econdary reports (Rumsey as cited in Bull & Rum s ey, 1986) have identified several behaviors common to individuals with craniofacial conditions. These include infrequent eye contact a more monotonou s tone of voice slouched posture fewer attempts at i1litiating conversations with others and less effective approach behaviors. As a result increasing attention ha s been paid to the importance of identifying the social skills of

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42 individuals with craniofacial conditions and working to increase their social competence (Bull & Rumsey, 1986 ; Kapp-Simon 1995; Tobiasen, 1995) Noting that the relationships among self-concept, social skills, inhibition, and adjustment in children with craniofacial conditions had never been explicitly examined, Kapp-Simon and colleagues ( 1992) conducted such a s tudy with 45 young adolescents. They concluded that children with craniofacial conditions appear at risk for psychological adjustment problems but not for poor self-concept, and suggested that self-concept scores may not be the best indicators of overall psychological functioning. Adolescents in the study scored in the normal range on self-perception, social skills, and inhibition but 1.5 SD below the average on a measure of adjustment Regression analyses were conducted Social skills were the primary predictor variable and together with athletic competence, accounted for 73 5 3/o of the variance in adjustment. According to the authors, these results suggest that adjustment in children with craniofacial conditions is related to social s kills and social behaviors rather than feelings about appearance, school performance or even their own sense of self-worth. However, other researchers have found that self perception s, particularly of appearance play an important role in psychosocial functioning and continue to emphasize the need to understand both maladaptive cognitions and coping styles in addition to behavioral deficits (Richman, 1983; Richman et al., 1985 ; Tobiasen & Hiebert, 1993 ). Research on the adjustment of children and adolescents with craniofacial conditions is often confusing and inconsistent due to disparities in variables measured instruments used and age and gender differences among subjects. However, several patterns have emerged As a group, children with craniofacial conditions are well

PAGE 50

43 functioning and not appreciably different from their nonaffected peers. Specific problems have been noted in subgroups of children and areas of functioning, for example social and peer interactions, school achieveme11t a tendency toward internalizing behavior problems and diminished self-concept in the social and physical attractiveness domains However, global self-concept is usually comparable to, or only slightly lower than, that of nonaffected peers Given the expectations of poor adjustment derived from literature on the physical attractiveness stereotype and stigmatization combined with social psychological theories on the development of self esteem, the generally high level of functioning is somewhat surprising. Although the need for increased knowledge has been emphasized (Bull & Rumsey, 1986; Pru z insky, 1992; Rubin & Wilkinson, 1995; Tobiasen 1995) little is known about specific risk and resiliency factors, including the possible use of "self-protective strategies" in lessening the impact of negative stereotypes and instances of prejudice or discrimination Self Protective Strategies and Stigmatization A significant body of research over many years has led to the rather surprising conclusion that prejudice against members of stigmatized or oppressed groups generally does not result in lowered self-esteem for members of the group. Without denying that prejudice and discrimination may be harmful in other ways Crocker and Major ( 1989) proposed that three mechanisms, or "self-protective strategies," mediate the association between stigmatization and global self-esteem among members of discredited groups Although the relationship has not been studied, it is possible that these strategies also help buffer the self-esteem and self-concept of children and adolescents with craniofacial conditions from the effects of negative perceptions and treatment by others Furthermore

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differential use of these strategies may contribute to the observed variability in psychosocial functioning among these children and adolescents. 44 Two of the self-protective strategies or mechanisms outlined by Crocker and Major (1989) are those of "ingroup comparisons" and "selective devaluation." As members of stigmati z ed groups are often disadvantaged on numerous dimensions, comparing oneself to similarly stigmatized others ("ingroup comparison") rather than to members of advantaged groups may protect one's self-esteem. Ingroup comparisons are often forced on stigmatized individuals as a result of segregated environments but may occur because people tend to compare themselves to others who are similar to them on important dimensions. The wish to enhance self-esteem by comparisons with alike or even less fortunate individuals may also motivate ingroup comparisons. The importance of reference groups has been shown in assessing children's self-concept in academic settings (Harter 1986 ; Marsh & Parker, 1984) and in the maintenance of self-esteem among women with breast cancer (Taylor 1983; Taylor, Wood, & Lichtman, 1983). Researchers have also shown that both self-esteem and affective state are related to beliefs about how one's abilities and attributes compare with those of others (Crocker Alloy, & Kayne 1988; Tabachnik Crocker, & Alloy, 1983). Selective devaluation, or regarding as less important to one's self-concept those dimensions on which one does poorly and valuing those on which one or one's group excels, may also serve to protect the self-esteem of stigmati z ed individuals. Since William James (1890 / 1981), the idea that it is necessary to know whether an individual values a quality in order to know whether that individual's self-esteem will suffer as a result of deficiencies in that quality has guided thinking about the self-concept and the

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45 preservation of self-esteem. Harter (1986) showed that self-esteem was linked to children's abilities to discount areas in which they were not competent. As it may be difficult to completely discount the importance of certain attributes in a given culture or sub-culture ( e.g., appearance or academic success in the United States today), one self protective strategy used by members of disadvantaged groups may consist of relatively overvaluing those attributes or domains in which they excel rather than devaluing those in which the dominant group excels. Attributing negative feedback or relatively poor outcomes to prejudice against one's group is the third self-protecti v e strategy suggested by Crocker and Major (1989). It is also the focus of this research. For example, if an individual with a craniofacial condition is not invited to party or fails to get a job, he or she may be uncertain whether the negative outcome is due to actual personal inadeqt1acies or because the other person is prejudiced. This uncertainty a characteristic reaction of stigmatized individuals (Crocker Voelkl, Testa & Major, 1991; Goffinan, 1963) allows one to attribute rejection to external causes such as prejudice rather than to personal deficiencies even if no prejudice exists, and thus preserve one's self-esteem. The idea that people seek causal explanations for events, particularly those that are negative, unexpected, or important, and that one's thoughts or perceptions about the causes of events has affective and behavioral consequences is central to attribution theory and the focus of much theoretical and clinical research (Abramson, Seligman & Teasdale 1978 ; McFarland & Ross 1982; Metalsky & Abramson, 1981; Schoenherr, Brown Baldwin & Kaslow 1992 ; Weiner, 1988; Weiner et al., 1988). For example, according to both the reformulated account of learned helplessness (Abramson et al .,

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46 1978) and the hopelessness theory of depression (Abramson, Metalsky, & Alloy 1988; Abramson Metalsky & Alloy 1989), the causal attributions people make for uncontrollable events they experience influences their helplessness and hopelessness self-esteem and level of depression Weiner another prominent attributional theorist places attributions at the center of his theory of motivation and emotion in both achievement and affiliative domains (Weiner 1986 ; Weiner 1988) Considerable evidence from the attributional theory literature indicates that making external attributions for negative events bolsters self-esteem, and, conversely attributing negative outcomes or feedback to internal causes (i.e lack of ability or being overweight) leads to lower self-esteem among individuals and groups (Bradley, 1978 ; Crocker, Cornwell, & Major 1993 ; Ickes 1988; Tennen & Her z berger 1987). A tendency to blame others for negative outcomes whether justified or not, has been ob s erved among stigmati z ed groups including those with craniofacial conditions (Bull & Rumsey, 1986 ; Crocker & Major 1989 ; Goffn1an, 1963; MacGregor, Abel, Bryt, Lauer, & Weissman I 953) The danger of cour s e to this approach is that externali z ing responsibility for poor outcomes may protect self-esteem in the short-term but have long term ne g ative effects if it prevents one from making necessary changes In addition to mediating s elf-esteem causal attributions may mediate the affective and behavioral responses to positive and negative outcomes among both children and adults Attention has been paid to the role of attributions in fostering depression, social anxiety, and loneliness and their influence on perceptions of social competence and achievement motivation (Crocker e t al., 1993 ; Dweck & Goetz 1978; McFarland & Ross, 1982; Michela Peplau & Weeks, 1982 ; Mikulincer 1988 ; Seligman et al 1984 ;

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47 Sobol & Earn, 1985 ; Tennen & Herzberger, 1987; Weiner, 1988; Vaux, 1988). Much of the research in this area has, in fact, focused on the role of causal explanations in the development of the same social and internalizing behavior problems associated with having a craniofacial condition. Individuals are considered to exhibit a particular attributional style to the extent that they make similar attributions for different events. Several researchers (Ickes, 1988; Ickes & Layden, 1978 ; Metalsky & Abramson, 1981; Weiner, 1986) have asserted that certain characteristic styles of attribution may predispose an individual to psychological difficulties. Factors such as utilization of situational information, strength of attributions, and differentiation of causal explanations across events and time contribute to the enormous variability in attributional style among and within people. While acknowledging the importance of situational effects, the trait aspects of attributional style are the primary focus here, and an understanding of differences in attributional styles requires consideration of the dimensions usually associated with causal explanations : internal-external stable-unstable controllability-uncontrollability, and global-specific. Although essentially similar Metalsky and Abramson's (1981) and Weiner's ( 1986) attributional style theories differ in their views about the controllability and globality dimensions Metalsky and Abramson, for example, maintain that people who tend to attribute bad outcomes to internal, stable and global factors and good outcomes to external factors such as "good luck" have a negative attributional style and should be most prone to depression and low self-esteem. Those with a positive attributional style generally attribute good outcomes to internal factors and bad outcomes to external factors. Although he substitutes controllability for globality, Weiner also postulates

PAGE 55

fundamental differences between individuals with negative and positive attributional styles in achievement and affiliative domains. As noted previously, evidence suggests that external attributions for negative events are linked to high self-esteem and, like overly positive self-evaluations, may actually promote mental health (Taylor & Brown, 1988) 48 The hypothesis that attributions mediate affective and behavioral reactions to positive and negative outcomes is consistent with empirical evidence on self-esteem and psychological well being in both adults and children. In a series of studies, Ickes and Layden (1978; Ickes 1988) explored the interrelation among attributional style, self esteem, and sex For negative outcomes low self-esteem participants made internal attributions while high self-esteem participants made external attributions. The reverse was true for positive outcomes. Regarding sex differences, they found that irrespective of self-esteem level, males tended to attribute failure to external factors and success to internal factors while females did the opposite A separate study examined the relationship between ability attributions and self-conceptions and found that attributing negative outcomes to a lack of ability was positively associated with depression (Ickes 1988) Individual differences in self-esteem and affective states have also been linked to attributional differences in other stt1dies. Tennen and Herzberger (1987) found that higher self-esteem subjects attributed positive, but not negative, outcomes to internal and stable causal factors whereas low self-esteem subjects tended to make internal attributions for failure and external unstable and specific attributions for success In Mikulincer's (1988) experiment, subjects were exposed to a series of unsolvable problems Individuals with an internal attributional style for negative outcomes were

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shown to experience n1ore depression and a decrease in performance than were those with an external style 49 Abramson Metalsky, and Alloy (1988 1989) proposed a hopelessness theory of depression with a diathesis-stress component. This model predicts that a style of attributing negative life events to internal, stable, and global causes and viewing these events as important (the diathesis) interacts with the actual occurrence of negative life events (stress) to increase the probability of the hopelessness subtype of depression. Although never examined, it may be that a similar process influences the development of internalizing behavior problems in individuals with craniofacial conditions or stigmatized conditions. Empirical research has, in fact, shown that the stigmatized may protect their self esteem and decrease negative affect by attributing negative feedback to external factor s such as prejudice rather than to internal deficiencies (Crocker et al., 1993 ; Crocker et al. 1991). In the first study overweight women who received negative social feedback from a male evaluator and who attributed the feedback to tl1eir weight and not to the evaluator's prejudice experienced more negative affect and depression than women who did not make internal attributions for social rejection (Crocker et al., 1993). In another study women who received negative feedback from a prejudiced evaluator and attributed the feedback to his prejudice (an external factor) reported less depression than did women who received negative feedback from a nonprejudiced evaluator (Crocker et al., 1991) In both situations women who made external attributions for negative outcomes were better able to protect their self-esteem and decrease their likelihood of depressed affect

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50 A related experi1nent (Crocker et al. 1991) with African-American and White participants and a White evaluator showed both a self-protective effect and a differential response to positive versus negative feedback. African-American subjects discounted the negative feedback they received from a White evaluator and, in so doing, maintained a high level of self-esteem. However, when African-American participants received positive feedback from a White evaluator, their self-esteem suffered. The authors noted that these findings are congruent with Goffman's (1963) hypothesis that interactions between stigmatized and nonstigrnati ze d individuals are often governed by ambivalence uncertainty, and difficulty interpreting the motives of others Thus, stigmati ze d individuals may be particularly sensitive to the motives underlying positive feedback. Such feedback may have positive consequences for self-esteem only when the stigmatized are certain the feedback reflects their deservingness and not special consideration or a fear of appearing prejudiced on the part of the nonstigmati ze d. Affect and attributional style appear linked in children as well. In the Seligman et al study (1984), children who attributed bad events to internal, stable, and global causes were more likely to report depressive symptoms than were children who attributed these events to external, stable, and specific causes. Attributional style also predicted depression six months later s uggesting that it is a risk factor for affective disorders rather than vice versa. The possibility that children may copy their parents' attributional style was suggested by the high correlations between styles of mothers and their children. Attributional style also predicted depressive symptomatology in children with chronic illnesses (Schoenherr et al ., 1992)

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51 While most of the research examining the relation of attributional style to problems in living has focused on depression, some attention has been paid to loneliness shyness, and difficulties in social and peer interactions. Although they were primarily interested in evaluating the dimensions of attributional style, Anderson and Riger (1991) found that a negative attributional sty le as measured by the Attributional Style Questionnaire (Peterson et al., 1982) was predictive of loneliness in interpersonal situations. And, in discussing the connections among shyness, self-esteem, and self consciousness, Cheek and Melchior (1990) reviewed the research literature indicating that shy people tend to accept personal responsibility for failure and attribute successes to external, unstable causes. Noting that shy people blame themselves for social difficultie s and tend to ignore, resist, or doubt the accuracy of positive evaluations the authors asserted tl1at ''the cognitive tendencies involved in shyness are persistently maladaptive before, during, and after social interactions" (p.71). The relationship between attributional style and success and failure in the social relationships of children has also been examined. Dweck and Goetz (1978) examined children's attributions for social re jectio n and found they were able to distinguish between internal, stable causes such as ability, and external and unstable causes such as the mood of the rejector. Children who attributed rejection to internal and stable causes had more difficulty continuing to pur s ue their social goals than did children who presented external explanations for rejection. Additional studies support the influence of attributions on children's social and peer interactions and on their self-esteem. Further1nore, there is evidence that altering mistaken attributions for poor social

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interactions may lead to better social relations in the future (Dodge, McClaskey, & Feldman, 1985; Sobol & Earn, 1985; Sobol, Earn, Bennett, & Humphries, 1983). 52 Causal attributions clearly reflect an important aspect of an individual's cognitive style or appraisal of events and situations and may as one researcher has noted, even act as unconscious influences on behavior (Dodge et al., 1985). As presented here, attributions may serve as "protective" strategies and mediate affective reactions to positive and negative outcomes. Evidence suggests that a positive attributional style in which stable, internal factors are seen as responsible for success and external ones for failure may contribute to the generally high levels of self-esteem and good psychological adjustment found among children and adolescents with craniofacial conditions. Inadequate use of these strategies may also help explain the low self-esteem and internali z ing behavior problems displayed by some children with facial disfigurements

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CHAPTER3 SUMMARY AND OBJECTIVES Literature on the physical attractiveness stereotype and stigmatization combined with social psychological theories on the development of self-esteem has led to predictions of major difficulties for individuals with craniofacial conditions It does not predict the reality of relative strength and psychological health characteristic of most of these children. Like their peers with other chronic and/or life threatening conditions, children with facial differences do not differ s ubstantially from healthy children in their emotional or psychological functioning However they may be at higher risk for specific behavioral problems, difficulties in social adjustment, and poorer school achievement Furthermore, evidence suggests there are significant differences in functioning within subgroups of children with facial disfigurements. The fact that specific problems have been noted within subgroups of these children and adolescents is not surprising Research shows the presence of clear normative standards of appearance, and differential perception and treatment of attractive and unattractive individuals. These differences apply both to peerand adult-child interactions Individuals with craniofacial conditions are viewed more negatively and are likely to experience in stances of prejudice and discrimination Thus, the stress of coping with a chronic medical condition may be exacerbated by instances of both felt and enacted stigmatization However, the di sc repancy between predictions from the literature and the observed health of many of these children and adolescents highlights how little is 53

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54 known about specific risk and resiliency factors and variables that may mediate the impact of negative experiences. As noted earlier, theoretical models such as Thompson's transactional stress and coping model and Wallander and Varni's risk and resiliency model (Thompson, Gil, Burbach Keith & Kinney, 1993; Thompson Gustafson, Hamlett & Spock, 1992; Vami & Wallander, 1988; Wallander et al., 1989; Vami & Setoguchi 1996; Wallander & Thompson, 1995 ; Wallander Feldman & Varni, 1989; Wallander & Varni, 1989) provide a heuristic framework for exploring sources of vulnerability and resistance in children and their families. Using such a multivariate, conceptually based approach, the model developed for this research (See Figure 1) specifically explores the roles of perceived stigma and attributional style within a larger framework of individual family, and social factors. Given the large number of variables in the model, many variables of both theoretical and practical interest cannot be examined in this study. These include psychosocial stressors such as major life events, daily hassles, instances of enacted stigmatization, prejudice, and discrimination, and condition-related variables. Other variables of interest crucial to individual functioning of individuals but not specifically examined in this study include social support; family environment and patterns of interaction; and intrapersonal variables such as temperament intelligence and competence (Benjamins, Hillman & Saddler, 1993; Benson, Gross, Kellum, Messer, & Passmore, 1991; Campis, DeMa so, & Twente, 1995; Greenberg & Quam.ma, 1994 ; Hamlett, Gustafson, Spock & Thompson, 1992). What are examined are the relationships among certain demographic and condition variables, perceptions of stigmatization, attributional style, se lf concept, and specific indices of psychosocial

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Intrapersonal Factors Temperment Competence Disability Parameters Visibility Appeara11ce Fu11ctio11al lmpair1ne11ts Demographics Age Ge11der SES Psychosocial Stressors Co ndition-relat e d pr oblems Life even t s ENACTED STIGMATIZATION Teasing Di s crimination Perceived Stignia Mediational Processes Attributional Style Copi n g stra t egies 55 Social-Ecological Factors Family Environment Social Support Family Cognitive Pro cesses Perceptions of Stigmatizatio,, Attributional style Psychological Adjustment/Outcome Self-concept SociaVPeer Relatio,,s Be/,avior Problems Academic Success Figure 1. Proposed Model Us ing Perceived Stigma and Attributional Style (Model variables in itali cs are examined in this study)

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56 adjustment in adolescents with a variety of craniofacial conditions. Independent variables include age gender, SES perceived appearance, number of functional impainnents, special school placement or remediation, and perceptions of stigmatization. Adjustment or outcome variables include global self-concept, internali z ing and externalizing behaviors social adjustment and peer interactions. Attributional style is hypothesi ze d to mediate the relationship between perception of stigmatization and the outcome variables The following questions are addressed: What is the level of perceived stigma among adolescents with craniofacial conditions? What is the attributional style of adolescents with craniofacial conditions in regard to positive and negative outcome of events? What is the relationship between perceptions of stigmatization, attributional style, and general measures of self-concept? What is the relationship between perceptions of stigmatization, attributional style, and behavioral social, and academic adjustment? Developmental differences in self-concept and an awareness of tl1e age-related effects of certai11 variables led to the focus upon adolescents in this study. The nor1nal developmental tasks of adolescence include the fo1mation of a sense of personal identity the establishment of satisfactory peer relations and the successful negotiation of school and educational requirements directed toward future career considerations. Adolescents consistently identify these areas, together with physical appearance, as their primary concerns (Violato & Holden 1988; Vami & Setoguchi, 1996) These areas are known to be among the mo st difficult for children and adolescents with craniofacial conditions, and adolescents may be particularly vulnerable to the development of problems Furthennore, positive peer relation s and satisfactory social relations are of paramount

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57 importance to healthy development: they have been shown to influence academic success in high school and presage the mastering of intimate adult relationships. They are also likely to be significantly influenced by experiences of rejection and discrimination, and by the attributions one makes for negative experiences Previous models of adjustment in this population ignored both subjective experiences and internal mediating factors. Experiences with stigmatization are presumed to influence adjustinent but nothing is known about an individual's subjective experience Furthermore, cognitive processes and coping strategies are known to influence outcome among chronically ill children but we have limited understanding of these factors in this population. Incorporating such variables into research on children and adolescents with craniofacial conditions may help explain disparities in previous studies ai1d increase the knowledge necessary for identifying children at high risk for psychological maladjustment Factors promoting greater resiliency in these children and their families may also be identified Hypotheses Based upon the preceding literature review the hypotheses of this study are as follows: I. A g e gender SES and number of functional impairrnents will not significantly predict perceived stigina general self-concept social adjustment, peer relations or externali z ing and internali z ing behavior problems. II. Greater satisfaction with perceived facial and physical appearance will predict higher general s elf-concept social adjustment, and peer relations Greater satisfaction with perceived facial and physical appearance will predict lower externali z ing and internali z ing behavior problems. III Higher perceived stigma will predict lower general self-concept social adjustment and peer relation s. High e r perc e ived stigma will predict higher external iz ing and internali z i11g behavior problems

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58 IV. Perceived stigma will contribute to the prediction of general self-concept social adjustment, peer relations and externalizing and internalizing behavior problems even when other independent variables (age, sex, gender, SES, number of functional impairments perceived appearance) are used in predicting the outcome variable s V The relationship between perceived stigmatization and the adolescent characteristics of general self-concept, social adjustment peer network and internali z ing and externali z ing behavior problems will be mediated by the adolescent's attributional style.

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CHAPTER4 METHODS Participants and Settings Eighty-three dyads composed of adolescents (53 male 30 female) with a visible facial difference and a parent or guardian participated in this study. Participants were recruited from comprehensive craniofacial clinics in three Florida cities. Of those participating 36 (43.37 % ) were affiliated with the University of Florida Craniofacial C enter (UF) in Gainesville, 25 (30 12 % ) were affiliated with the Nemours Children's Clinic (NCC) in Jacksonville, and 22 (26.51 % ) were affiliated with the University of South Florida Craniofacial Programs (USF) in Tampa St. Petersburg. Adolescents were eligible to participate if they were between 13 0 and 18.0 year s of age with a visible facial difference / craniofacial anomaly, were not enrolled in an educable or trainable mentally handicapped classroom, had no profound physical disability such as blindness or inability to walk, and had no more than a moderate hearing loss (speech reception threshold of 40-60dB) in their better ear. Additionally, both adolescent and participating parent/guardian were required to speak and read English. Participants were screened in three stages to insure that eligibility requirements were not breached First, clinic records were reviewed to identify potential adolescents Secondary screening occurred when potential participants were contacted and invited to participate in the study Finally after info1med consent was obtained, each adolescent s medical record was reviewed to determine if inclusion criteria were met Of the 133 59

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60 families identified and actually contacted, 16 were ineligible due to developmental delay or mental handicap parent unable to read English, or adolescent not living at home, and 19 declined to participate Of the parents who declined, three stated that their adolescent was well-adjusted and did not think of themselves as having a facial difference and three reported their child had psychosocial problems related to their craniofacial condition and the child did not wish to discuss anything related to it Eleven parents or adolescents declined due to lack of time or interest and two parents reported significant family crises (recent death or divorce) that precluded participation Thus 98 (84%) of the 117 eligible families contacted agreed to participate However eleven did not sufficiently complete one or both sets of questionnaires and data from four families were discarded because it was later determined that the adolescent did not meet inclusion criteria Although the parents of these four adolescents denied any problems during the initial screening interview, subsequent review of the medical records indicated that their adolescent had either s evere hearing loss or developmental delay that made them ineligible to participate. The final sample included 83 adolescent / parent dyads a participation rate of 71 %. Adolescent participants ranged from 13 to 18 years with a mean age of 14.6 years (SD = 1 57 years). Sixty-eight (81.9%) of the adolescents were Caucasian, 6 were African-American (7.2 % ) 6 were Hispanic (7 2 % ) and 3 (3 6%) were from other ethnic groups. Forty-one adolescents (49 8 % ) had a diagnosis of unilateral cleft lip with/without cleft palate (UCL/P) 16 had bilateral cleft lip with/without cleft palate (19 27 % ) 13 (15 66 % ) were identified as having a craniofacial syndrome, and 13 (15.66 % ) reported various otl1er c raniofacial diagnoses. Individuals with a particular craniofacial syndrome (e g. Apert or Crouzon) have a recogni z ed pattern of difference s

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61 that occur in various areas of the body and are considered to have a single and specific cause. The features characteristic of a specific syndrome can occur to different degrees, and a child can have many, some, or only a few of the features. Specific craniofacial diagnoses such as cleft lip, cleft lip and palate, or hemangioma also vary in severity but these conditions involve only the structures of the head and face the bones and soft tissues such as nerves, muscles and fat. Table 1 gives a complete list of the conditions represented. For some analyses, participants were grouped into three general diagnostic categories : Group I Unilateral and bilateral cleft lip with/without cleft palate (n = 57, 68.7%); Group II Craniofacial syndromes (n = 13, 15.7 % ); Group Ill Other diagnoses (n = 13, 15. 7 % ). Of the participating parents or guardians, 67 (80 7 % ) were mothers, 14 (16 9 % ) were fathers, and 2 (2 4 % ) were guardians or other biological relatives. Fifty-six (67.5%) of the participating adults were married, 18 (21.7%) were divorced, and 9 (10.8%) reported some other marital status. Families averaged 2. 78 children (!i. = 82, SD = 1.52) Mean SES score calculated using the Hollingshead four factor index of social status (Hollingshead, 1975), was 40.13 (n... = 82, SD = 11.71, Mdn = 39.57), corresponding to the lower end of the minor professional / technical classification. SES raw scores were no1n1ally distributed and ranged from 11 to 64. Demographic and condition-related infor111ation is provided in Tables 2 and 3. Group comparisons were conducted to detern1ine if there were any significant differences on selected demographic and condition-related variables among participants recruited from the three institutions. Chi-square analyses were used for the categorical variables of gender and diagnostic group Analyses of variance (ANOVAs) were used

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Table 1 Craniofacia l Diagnoses of Participants by Institution Diagnos i s Unilateral Cleft Lip/Palate a Bi l ateral Cleft Lip/Palate a Craniofacial Syndromesb Treacher Co l lins Goldenhar Microtia Hemifacia l microsomia Crou z on's Pierre Robin Velocardiofacial (VCFS) Stickler Other c Ectodermal Dysplasia & CLIP Bilatera l dysmorphic ears Hemangioma Parry-Rhomberg syndrome Facial Nevus Macrostomia Facial asymmetry Scleroderma with Cleft Lip UF (n = 36) 20 6 5 0 1 0 2 1 0 1 0 5 2 0 1 1 0 1 0 0 I os tih1 tiao NCC (n = 25) 10 6 4 0 1 2 0 0 0 0 1 5 0 2 0 0 0 0 2 1 USF (n = 22) 1 1 4 4 1 0 0 2 0 1 0 0 3 1 0 0 0 l 0 1 0 62 Total (N = 83) 41 (49.40 % ) 16 (19 27 % ) 13 (15 66%) 13 (15 66%) Note. In selected subsequent analyses, participants are grouped by d i agnosis in the following manner : a Group I Unilateral and bilateral cleft l ip ; b Group II Craniofacial syndromes; c Group m Other diagnoses.

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Table 2 Demographic Information by Institution Variable Age (in years) M SD Gender Male(!!) Female (n) # Hospitalizations M SD # Surgeries M SD SES Score M SD Mother's Education a (years completed) M SD Father's Education b (years completed) M SD # Chi 1 dren in fami I y a M SD Note. a n = 82 n = 75 UF (n = 36) 14.80 1 58 26 10 6 23 3.62 6.10 3 41 44.57** 12 07 14.19 2 54 14.49 3.87 3 00 1.96 **difference is significant at Q < .01. Institution NCC (n = 25) 14.45 1.50 16 9 6 28 3.16 6 20 3.15 38 56 9 24 13.12 1.39 13 00 2.02 2.84 1.18 USF (n = 22) 14.47 1 65 11 11 6.61 5.22 6 95 5.00 34 66** 11.29 12.57 2 .5 6 12.73 2.05 2.33 0.86 63 Total (N = 83) 14 61 1.57 53 30 6.34 3.94 6.36 3 80 40.15 11.86 13.45 2.34 13.64 3 10 2.78 1.52

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Tab l e 3 Rates of Special Educational Placement and Treatment-Related Variables Variable History of Special Educational Placement Specific Leaming Disability Speech Gifted or Advanced Speech and SLD Speech and Gifted Hearing Impaired None Number repeated grade in school Number receiving treatment for Hearing Speech Dental or Orthodontic Number anticipating future surgery Number 19 17 8 4 2 3 29 20 12 8 68 59 Number of current functional impairments per ado l escent 0 1 2 3 55 16 10 2 Percentage 22.90 20 50 9.60 4.8 2.4 3 6 34.90 24.10 14.5 9.6 81.1 71 1 66 3 19.3 12.0 2.4 64 for age, SES score, and number of hospitali z ations and surgeries. Participants from the three institutions did not differ on any of the measures except for SES score E (2 80) = 5.82, Q = .004 Families from OF / Ga in esvi ll e obtained s i gnificantly higher mean SES score (44.57) than did fainilies from USF / Tamp-St. Petersburg (34 66) The difference between Gainesville and Jacksonville participants' SES was not significant

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65 The three dia g nostic categories were also compared on demographic and condition-related variables. Chi-square analysis indicated that gender and diagnosis were significantly related x, 2 (2, N = 83) = 7.81 12 = .02, with proportionately more males and fewer female s than expected in the cleft lip / palate group (Group I) and proportionatel y fewer males than females in Group III (Other diagnoses) The greater number of males in the cleft lip / palate group is as expected given the 2: 1 sex ratio of males to females identified for this condition by epidem iolo gic studies (Owens et al., 1985) Analyses of variance indicated the differences among diagnostic groups on SES score, number of functional impairments, and number of surgeries were not significant However number of hospitali z ations was significant l y different for adolescents in Diagnostic Groups I and II, E(2,75) = 3 22, 12 < 05. Adolescents in Group I (UCL/P and BCL/P) averaged 6 95 hospitali z ations (SD = 3 49) while those in Group II (Craniofac ial syndromes) averaged 3 85 (SD = 3.49) Mean number of hospitalizations for those in Group III (Other diagnoses) was 6.38 (SD = 5 97) Measures Measures Completed by Adolescent Participants Physical appearance Self Description Questionnaire II, Physical Appearance Scale (SDQ11; Marsh, 1990). The construct of general perceived physical appearance was measured using the eight-item Physical Appearance subscale of the Self Description Questionnaire II (Marsh, 1990) This subscale assesses the degree to which the adolescents are happy with the way they look think they have a nice lo oking face and body, and compare their appearance to their peers Internal co11sistency ( coefficient alpha) reliability of the

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66 Physical Appearance subscale is .91 (Marsh, 1990). Test-retest reliability over seven weeks was 75 (Marsh, 1990). The SDQ-II is based upon a multifaceted hierarchical model of self-concept ai1d de s igned for individual scale interpretation. Scores range from 8 to 48, with higher scores indicating greater satisfaction with one s physical appearance Perceived stigma Social Perception Questionnaire. The construct of perceived stigma was operation ~ y defined as the subjective belief that having a facial difference / craniofacial anomaly negatively affects social relationships and interactions There is no standardi z ed measure of perceived sti~ a d es 1gned for use in this population However a questionnaire designed to assess perceived stigma among individuals 12 to 20 years old with epilepsy has been used in several studies (Westbrook et al. 1992) and was modified for use in this research (see Appendix A). The Westbrook et al. questionnaire included four items that in a factor analysis, loaded on a single factor with relatively large coefficients; varimax factor loadings were 91, .90 .75 and .52. Interitem correlations were generally moderate ( average 46) and internal consistency was 78 as measured by Cronbach's alpha. The wording of th e items was changed so that "facial difference / craniofacial anomaly" was substituted for the word "epilepsy". In addition the wording of one of the items was changed to replace '' sexual relations'' with "can date or have intimate relationships". Questions were scored on a 0-5 point Likert (visual analog) scale Zero-point responses indicate no perceived stigma while the adolescents graded positive perceived stigma responses from 1 to 5. Higher numbers indicated greater perceived stigma. Items were summed to produce a total score for use in analyse s ; 20 was the maximum possible score

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67 Attributional style KAST AN Children's Attributional Style Questionnaire (CASQ; Seligman et al., 1984) is the major instrument utili z ed by researchers to examine the ways youth 7 to 18 years attribute causality for positive and negative events. The 48 events tap three attributional dimensions: internal-external, stable-unstable, global-.specific. The internal external dimension refers to whether the locus of causality is internal ( due to self) or external (due to others or circumstances) The stability dimension refers to the degree to which the child views the cause of the event as being stable over time. The globality dimension refers to the degree to which the child views the cause of the event as being generali z able across situations Each item comprises a situation ( e.g., "You get good grades") and two possible attributions to explain why the situation occurred ( e g "I am a hard worker" vs "School work is easy"). Children are instructed to choose the alternative that best describes why the event happened to them Half the situations represent good outcomes; half represent bad outcomes A composite score for positive and negative events is derived as well as an overall composite score The lower the difference score between positive and negative event composite scores (summary score) the more pessimistic is the child's explanatory style for causes of events Adequate psychometric properties, including test-retest reliability and internal consistency have been demonstrated (Kaslow Rehm & Siegel, 1984; Seligman et al ., 1984) Self-concept Self Description Questionnaire-II, General Self Subscale (SDQ-11; Marsh, 1990). The General Self subscale of the SDQ-II was used as a measure of global self concept. The SDQ-II is a 102 item questionnaire designed to measure self-concept in

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68 adolescents in grades 7 through 12. Each of the 11 SDQ-II domains contains 8-10 items half of which are negatively worded to disrupt positive response biases. The SDQ-II subscales are: Physical Abilities, Physical Appearance Opposite-Sex Relations, Same Sex Relations Parent Relations, Honesty-Trustworthiness Emotional Stability, Math, Verbal General School and General Self. In addition a Total Scale score is calculated by summing the individual subscale scores. The coefficient alpha estimate of reliability for each subscale varies from .83 to .91 whereas the average correlation among the factors is modest. The scale is based upon a theoretical model that conceives of the self concept as a multidimensional hierarchical entity. Although normed on a group of 5,494 Australian adolescents the SDQ-II has been used extensively throughout the world, including within the United States. It produces scores comparable to those obtained from a multidimensional self-concept scale (Bracken 1992) normed in the United States (r=.80) and factor structure and construct validity have been consistently supported. Internal consistency ( coefficient alpha) reliability for the General Self subscale is .88 and test-retest reliability over a seven-week interval is .85 (Marsh, 1990). Scores on the General Self subscale range from 10 to 60 with higher scores indicating higher overall s elf-worth and self-satisfaction As only intragroup comparisons were made raw scores were used in all calculations. Social adjustment Social Skills Rating System (SSRS; Gresham & Elliott, 1990). The SSRS samples the domains of social skills academic competence and problem behavior. It was designed for use with normal and slightly handicapped students for whom social skills deficits might limit academic performance. The Social Skills sub-scale of the

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69 Student Form was used as a measure of adolescent social adjustment. The SSRS offers Parent Teacher and Student Forms at three deve lopm ental levels (i.e preschool, kindergarten through sixth grade seventh through twelfth grade). Only the Parent and Student forrns for grades seven through twelve were used. The student version is for youth who are capable of reading at the third grade level and assesses only social skills while the parent version as s esses both social skills and problem behaviors The SSRS standardi z ation sample included 4 170 self-ratings of children and youth 1,027 parents and 259 teachers The sample represented White, Black and Hispanic individuals drawn from all regions of the United States and urban rural and suburban communities Internal reliability ( coefficient alpha) is excellent for all forn1s in regard to the Social Skills Scale ( 83 94) and Problem Behavior Scale( 73. 88). Coefficient alphas are .83 for the Secondary student self report Social Skills scale and.90 for the Parent report Social Skills scale (Gresham & Elliot 1990). Test-retest reliability for the self-report Social Skills scale is 68, computed for a 4-week period using the Elementary standardization sample. Content social criterion-related and construct validity are adequate Raw scores were used in all statistical analyses Peer Interaction Record (PIR;Thompson, 1994). The number of adolescents' social interactions with peers was assessed using a modification of the Health and Daily Living Form (Moos Cronkite, Billings & Finney, 1984) entitled the Peer Interaction Record (PIR ; Thomp s on 1994). The PIR asks the adolescent to estimate how often they engaged in each of 12 typical p e er activities during the past week The number of different activitie s en g aged in and the number of different peers mentioned across the 12 activities were calculated to estimate the adolescent s activity level and peer network. 7 t

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70 The PIR has been shown to be sensitive to differences in the quality and quantity of peer interaction s in adolescents with chronic illnesses (Pendley Dahlquist & Dreyer 199 7), and di s criminates between sameand opposite-sex interactions and between group ( e g ., Bo y Scouts organi z ed religious activities) and peer-initiated activities (See Appendix B). Measures Completed by Parent or Guardian Demographic information Demographic Questionnaire Parents completed a brief questionnaire (see Appendix C) identifying marital status parents' education and occupation ethnicity and number of children. Infor1nation regarding their adolescent's school status and current and past special educational placements was also obtained. Condition-related variable s such as number of hospitali z ations and surgeries and number of functional impairments ( e g. s peech or chronic hearing problem, learning disability) requiring therapy or treatment at the time of the study were also assessed by parent report. Number of functional impairments was totaled with one point given for each impairment reported b y the parent or recorded in the medical record. Scores ranged from O (no functional impainnents) to a maximum of 3 (1 point each for hearing impairment speech impair1nent, and special educational placement). Perceived stigmatization Social Perception Questionnaire. The parent or primary caregiver completed the Social Perception Questionnaire described previously giving their perceptions of their adolescent s experience of stigmati z ation. The wording of the items was altered to reflect this change i e. replacing ' your appearance / facial difference'' with ''your child s appearance / facial difference ''. Internal consistency of the original four-item scale was

PAGE 78

71 .78 as measured by Cronbach's alpha correlation coefficient (Westbrook et al 1992) A copy of the questionnaire is included in Appendix A Attributional style The Attributional Style Questionnaire (ASQ; Peterson et al., 1982). The ASQ pre se nts 12 hypotl1etical events 6 good and 6 bad for which participants are asked to make attributions and rate these attributions on internal-external, stable-unstable, and global-specific dimensions Composite scores for both positive and negative events are derived as well as an overall composite attributional style score Internal reliability for the positi ve and negative subscales estimated using Cronbach's coefficient alpha, are 75 and 72, respectively. Social and behavioral adjustment Social Skills Rating System, Social Skills and Behavior Problems Scales (SSRS; Gresham & Eilliot, 1990) The Behavior Problem scale of the SSRS, discussed above, served as the measure of behavioral adjustment This scale was completed by the parent/guardian and assessed both internalizing and externalizing behavioral difficulties as well as the parent 's perception of their adolescent's social skills Coefficient alphas are .82 for the Externali z ing s ubscale 72 for the Inte ~a l izing subscale, and .81 for th e (1 'I: I total Problem Behavior sca l e. Test-retest reliabilities, calculated over a 4-week period for the Ele1nentary standardi z ation sam ple were 58 for Externalizing behaviors and 48 for Internalizing behavior s (Gresham & Elliott, 1990) The Social Skills scale is a parent rated assessment of their child s competence in social interactions and is comparable to the s tudent fo11n of the SSRS discussed previou s ly I

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72 Peer Interaction Record (PIR; Thompson, 1994) The number of adolescents' social interactions with peers was assessed using a modification of the Health and Daily Living Form (Moos Cronkite Billings, & Finney 1984) entitled the Peer Interaction Record (PIR ; Thompson 1994). The PIR asks the parent to estimate how often their adolescent engaged in each of 12 typical peer activities during the past week The number of different activities engaged in and the number of different peers mentioned across the 12 activities were calculated to estimate the adolescent's activity level and peer network The PIR has been shown to be sensitive to differences in the quality and quantity of peer interactions (Pendley et al., 1997). Procedure Appropriate Institutional Review Board approval was obtained from all participating institutions as well as from the Florida Department of Health Review Council for Human Subjects. Adolescents with facial differences were recruited either during a routine clinic visit or by telephone from lists provided by the cooperating institutions. Craniofacial clinic patient rosters were examined and potential participants identified. Letters explaining the study were sent to the parents or guardians of eligible patients Approximately one to two weeks later, either tl1e principal investigator (PI) or a trained research assistant (RA) called to answer any questions and solicit participation If the parent and adolescent were interested in participating, arrangements were made to collect data either during a clinic visit, at the family's home or by mail. All participants were given a copy of the appropriate informed co11sent fo1m to keep and invited to receive a summary of study results after it is completed. Each participant was informed of their right to refuse to answer any question and their right to discontinue their

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7 3 participation at any time without jeopardi z ing their family's medical care. Order of presentation of measures was counterbalanced and the measures were divided into two groups to minimi z e order effects. Adolescents were compensated $10.00 for each set of questionnaires completed or $20 00 for completing all measures Participating parents were compen s ated $5 00 for each set completed or $10.00 total Data collected during a clinic visit. A research team member met both adolescent and parent / guardian reviewed procedures, and obtained signed Informed Consent and Assent for1ns. Participants then completed the first set of measures. Remaining que s tionnaires were completed either during a later clinic visit or, if they preferred, participants were provided with a stamped addressed return envelopes and permitted to finish them at home. Follow-up phone calls were made to review instructions answer any questions and encourage return of all questionnaires. Data collected by mail or at home. Participants were mailed the appropriate Informed Consent and Assent that they were asked not to sign until contacted by the investigator; detailed instructions; the first set of questionnaires ; and a stamped return envelope Approximately 57 days later the family was contacted by phone and Informed Consents and instructions were reviewed with both the adolescent and parent. After the first set was returned the second set of questionnaires and instructions was mailed to the family. Again, phone calls were made to ensure measures were appropriately completed and returned Two families were mailed the first set of questionnaires and completed the second set at home in the investigator s presence After obtaining infor1ned consent, appropriate medical records were reviewed for information regarding the adolescents' craniofacial diagnosis and results of their most

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74 recent hearing and speech tests. All questionnaires were coded by number and kept separately from the infonned consents in files accessible only to the researchers. Measures were scored according to standard procedures by either the PI or RA and entered into the database. SES score and category were calculated using the four-factor index of social position (Hollingshead, 1975).

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CHAPTERS RESULTS The first section of this chapter contains descriptive statistics for demographic and test variables, comparisons between the craniofacial sample means and the standardization sample means for selected measures and gender, institution, and diagnostic group comparisons (Tables 3-6). Due to the large number of comparisons conducted, a more stringent significance level of ~ = .01 was adopted to minimize the chance of Type I errors for these analyses. Intercorrelations of variables are presented next (Tables 7-8), followed by results of multiple regression tests of the hypotheses (Tables 9-18) All statistical analyses of the data were performed using the Statistical Package for the Social Sciences (SPSS/Base 10 1999). Description of Sample Variables Adolescent Characteristics Adolescents ranged in age from 12.80 to 18.00 years with a mean age of 14 61 (SD= 1 57) Mean family SES was 40.13 (SD= 11 .7 1) using the Hollingshead (1975) four-factor index of social status. Details of condition-related variables are given in Table 3. In calculating the total number of functional impairtnents, one point was given for each impair1nent (chronic hearing speech, learning disability) requiring treatment or special educational placement at the time of the study. Based on these criteria, 55 (66.3%) of the adolescents reported 110 functional impairments 16 (19.3%) reported one 10 (12%) reported two, and 2 (2.4%) reported three functional impairments 75

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76 Forty-five (54 2%) of sample adolescents had a history of enrollment in special classes for speech specific learning disability, or hearing impairment and 20 (24 1 % ) had repeated a grade in school At the time of the study 68 (81.9%) were undergoing dental or orthodontic procedures, 12 (l 4 5 o/ o) were receiving some treatment for hearing problems (i.e., antibiotics for ear infections hearing aids etc ), and 8 (9.6%) were in speech therapy Participants reported a mean of 6 34 hospitalizations (n = 83, SD = 3 94) and 6 34 surgeries (n = 83, SD = 3.80) A majority of participants (71 1 o/ o) anticipated undergoing additional surgical procedures at some time in the future. Distribution of Variables Means, standard deviations, and Cronbach's alpha reliability coefficients for adolescent variables and questionnaires are presented in Table 4 Those for the parent questionnaires are given in Table 5. Scores were normally distributed for SES, both raw and standardized scores on Student and Parent versions of the SSRS Total Social Skills Scale (SSRS-Student, SSRS-Parent) and the Parent Attributional Style Questionnaire (PASQ). The remaining variables were not normally distributed and could not be transfom1ed to norrnal distributions Thus, nonparametric or distribution-free statistical procedures were used in those analyses where the assumptions required for the use of parametric techniques were violated. Adolescent Measures Attributional style The mean for the Children's Attributional Style Questionnaire (CASQ) composite positive events score (M = 1 3.71; SD = 3 63) was not s ignificantly different from the mean for the groups on which the CASQ was developed (M = 13 .46; SD = 3 91 ), 1 (81) =

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Table 4 Sample Means and Standard Deviations Adolescents Variable Adolescent C hara c teristics Age in Years SES Number of Functional Impairments Adolescent Questionnaires Attributional Style CASQ Composite Positive CASQ Composite Negative CASQ Overall Score Physical Appearance SDQII Physical Appearance Self-Concept SDQII General Self Perceived Stigma Social Perception Questionnaire Social Adjustment SSRS Student Raw Social Skills SSRS Student Standardized Social Skills PIR Peer Network PIR # Activities n 83 83 83 82 82 82 82 82 83 82 82 82 82 M 14.61 40.13 0.51 13 71 7 68 6 02 33.54 52.21 6 58 52.16 102 98 5.31 6.13 SD 1.57 11.71 0.80 3.63 3.04 5 52 10 14 8.76 5 25 8.62 14.9 7 4.87 2.78 77 a ---. 59 52 66 91 78 .92 .82 --. 73 .62, 12 = 54. However, the difference for the total negative events score was significant The craniofacial sample obtained a mean of 7 68 (SD = 3 04) compared to the original sample's mean of 6.34 (SD = 2. 79), suggesting that thi s group of adolescents with facial differences were more likely to make internal, s table and global attributions for negative events (8 1) = 4 0, p = 000 The CASQ overall composite attributional style score used in all statistical analyses was calculated b y s ubtracting the total score for negative events

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Table 5 Sample Means and Standard Deviations Parent Questionnaires Variable Attributional Style ASQ Positive Composite ASQ Negative Composite ASQ Overall Composite Perceived Stigma Social Perception Questionnaire Behavioral Adjustment SSRS Parent Total Behavior Problems SSRS Behavior Problems-Standardi ze d SSRS Parent Externalizing Problems SSRS Parent Internali z ing Problems Social Adjustment SSRS Parent Raw Social Skills SSRS Social Skills Standardized PIR Peer Network n 80 80 80 83 82 82 82 82 82 82 81 M 5 .3 4 4 13 1.21 5 .33 9.04 102 .8 4 4 .39 4 .7 4 54.26 98.62 5.33 SD .74 .83 .99 5.05 4 21 14 20 2 42 2.45 10.39 14 .9 4 4 .89 a .75 .78 -.96 82 -. 78 .76 91 --78 from that for positive events, with a lower score representing a more pessimistic attributional style. In this sample, the CASQ overall attributional style score (M = 6.02, SD = 5.52) was slightly lower than but not signi ficantly different from, that of the reported sample's mean of7.12 1 (81) = -1.78 12 = .08 Cronbach's alpha reliability statistics for the craniofacial sample s composite positive and composite negative events scales were 59 and .52 Average reported internal consistency reliabilities are .69 and .52, respectively. Cronbach's alpha reliability for the craniofacial sample's composite attributional style score was 66 which is within acceptable limits and comparable to other reported reliability statistics (Seligman et al, 1984)

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79 The three dimensions of attributions (Internal-External, Stable-Unstable, Global Specific) for the negative events sub scale were compared to those of the normative sample in order to better understand the factors contributing to craniofacial sample's more pessimistic attributional style. T-tests indicated no significant group differences on the Stability dimension (79) = 971, 12 = .334. However, the results indicated that these adolescents were significantly more likely to attribute negative events to internal(! (79) = 2.69, 12 <. 00) and global causes (! (79) = 8.24, 12 < 00). Physical appearance Adolescents' perception of their physical appearance was measured using the eight-item Physical Appearance subscale of the Self Description Questionnaire-II (SDQ II Appearance). The sample mean of 33.45 (SD = 10 14) was not significantly different from the standardi z ation group mean of 31.2 (SD = 10 3), (80), 2 0, 12 = .05. There were also no statistically significant differences between the craniofacial sample male (M = 34.26, SD = 10.54) and female (M = 32 16, SD = 9.28) scores and the standardization group male (M = 34.2 SD = 9.6) (49) = .04, 12 = .97 and female scores (M = 28.4 SD = 10.2), t (30) = 2 26 12 = .03 Internal consistency reliability for the sample's SDQ-II Appearance subscale (a = .91) exactly equaled the previously reported coefficient alpha. Self-concept Mean self-concept score for the craniofacial sample, as measured by the SDQ-II General Selfsubscale, was 52 21 (SD = 8.76) significantly higher than that of the standardi z ation mean of 48.3 (SD = 9 7), (80) = 4 02, 12 < 01. When examined by gender there were no significant differences in self-concept scores for males in the craniofacial sample (M = 52.1, SD = 9.1) versus the standardization group (M = 49 1 SD

PAGE 87

= 9 6) (50) = 2.4, n = .02 However, the sample mean for females (M = 52.23, SD = 8.30) was significantly higher than that of the standardi z ation group s mean (M = 47 4 SD = 9.7) 1 (29) = 3.2, n = .003 Coefficient alpha for this administration was .78 s omewhat lower than the previously reported internal consistency reliability of .88 Perceived stigma 80 Perceived stigma was operationally defined as the belief that one s craniofacial condition and appearance negatively affected social interactions. The Adolescent Social Perception Questionnaire (ASPQ) compo s ed of four items, was used in an attempt to quantify this construct Zero-point responses on each item indicated no perceived stigma, while positive responses were graded on a 1 to 5 scale. Items were summed to yield a total score that was used in all statistical analyses. Possible scores ranged from O to 20, with higher scores indicating greater perceived stigma. Results for individual questions were tabulated and are presented in Appendix D Scores ranged from 0-5 on each item and from 0-20 for the full questionnaire Thus scores for this sample of adolescents were distributed across the entire range of possible values Sample mean was 6 58 (SD = 5.25) and Cronbach s alpha correlation coefficient was .92 indicating high internal consistency. Seventeen percent of the adolescents had a total score of O while 83 % of adolescents reported some experience of stigmat iz ation in their social interaction s, i.e ., they had a total score of one or greater. However while the vast majority of adolescents perceived some negative impact, many participants did not report any belief that their facial difference led to rejection or s tigmati z ation in spe c ific area s of social functioning For example 19 % had a score of '' O '' on the question asking whether they thought their facial difference affected wheth e r

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others wanted to be friends with them; 25o/o responded negatively to the question as to whether they thought it affected whether people liked them; 34% felt their facial difference did not affect their inclusion in social events; and 30% reported feeling their appearance had no negative effects upon dating and intimate relationships. 81 For descriptive purposes adolescents were divided, based upon their total scores, into three categories according to whether they reported None Low (0-6), Moderate (713), or High (14-20) perceptions of stigmatization Forty-six (55.4o/o) of this sample reported a Low level of perceived stigma, 29 (34.9%) reported experiencing a Moderate level of stigmatization, and 8 (9.6%) of the adolescents reporting feeling a High level. In sum, these results suggest significant variability in perceptions of stigmatization among this sample of adolescents, with virtually all reporting some negative experiences and almost 50% perceiving moderate to high levels of social rejection and isolation secondary to their craniofacial condition. As noted previously gender, age, diagnostic category, number of functional impairments and racial/ethnic identity were not significantly related to perceptions of stigmatization. Social adjustment Although raw scores were used in all statistical analyses, standardized scores and behavioral levels were calculated in order to describe and compare the social skills levels of craniofacial participants. Standardized mean scores (M = 102 98, SD = 14 97) for adolescent self-reported social skills (SSRS-Student Social Skills scale) were not significantly different from the normative sample sta11dard scores (M = 100, SD = 15) 1 (82) = 1 79 12 = .08 Cronbach's alpha coefficient was 82 and also compares favorably to the no1mative sample coefficient alpha of .83. Raw scores were also translated into

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82 descriptive Behavioral Levels, derived from cut-off points based upon the SSRS standardization sample Raw scores within one standard deviation of the sample mean are considered to be in the Average range, those above one standard deviation are labeled More, and those one standard deviation below the mean are labeled Fewer. Classification of the craniofacial adolescents into these Social Skills Behavioral Levels resulted in 12 (14.5%) classified as displaying Fewer social skills, 55 (66.3%) as displaying an Average level and 15 (18.3%) as exhibiting More social skills than the average for the standardization group. The number of different peers mentioned across the 12 activities listed on the PIR was calculated to estimate the adolescent s peer network Mean for this variable was 5.31 (SD = 4.87), and scores ranged from Oto 28. Parent/Guardian Measures Attributional style Means and standard deviations for composite positive composite negative and overall attributional sty le scores on the Attributional Style Questionnaire (ASQ) are presented in Table 5. Differences between craniofacial parent means and the standardization sample's means on the ASQ were not statistically significant [(Positive M = 5.25, SD =. 62, t (79) = 1 09, p = .28) ; (Negative M = 4 .12, SD = 64 1 (79) = .097, 12 = .92); (Overall M = 1 14 1 (79) = .74, 12 =. 46)] Respectable alpha coefficients of .75 and .78 were obtained for the composite positive and negative subscales, respectively These compare favorably with standardization coefficient alphas of .75 and 72 for positive and negative subscales.

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83 Perceived stigma Total scores on the Parent Social Perception Questionnaire (PSPQ), used to assess parental perceptions of their adolescent's experience of craniofacial-related stigmatization, ranged from 0-19 with a sample mean of 5.33 (SD = 5.05) Cronbach's a lpha correlation coefficient for the four-item scale was 96. The format for this questionnaire exactly paralled that completed by the adolescents, and thus possible scores ranged from 0-5 for each item and 0-20 for the whole scale Individual item results are presented in Appendix E Adolescent and parent perceptions of stigmatization, using the total scale scores, were compared using the Wilcoxon test for matched-subjects The results indicated a significant difference, with adolescents reporting higher levels of perceived stigmatization than their parents: i = -2.13, ~ < .05 When responses to individual questions were examined, parents reported less perceived stigma related to their adolescent's facial difference than the adolescents reported Twenty-seven percent of parents thought their child's condition had absolutely no effect on whether others wanted to be friends with their adolescent, 353/o of parents thought it had no effect upon whether others liked their adolescent, 35% felt it did not affect social invitations and activities, and 43 % believed their adolescent's facial difference would have absolutely no impact on dating and intimate relationships Twenty-five percent of parents viewed their adolescent's facial difference as having absolutely no negative impact on social interactions (i.e. total score summed over all questions was 0). When parents were grouped according to amount of stigmatization they perceived their adolescent to experience, 52 (62 7%) fell into the None-Low level category, 23 (27.7%) reported a

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Mod e rat e level, and 8 (9 6 % ) reported perceivin g a High level Thus, overall just 37 % of parents saw their children as being moderately or highly stigmati z ed in social situations as a result of their facial difference Behavioral and social adjustment 84 The mean of the craniofacial parents' SSRS-Parent Social Skills Scale Standardized score s (M = 98 62, SD = 14 94) did not differ significantly from the standard scores of the normative sample (M = 100; SD = 15), 1 (81) = 835, n = .41 Wl1en classified according to descriptive behavioral levels 17 (21 00 % ) parents reported that their adolescents exhibit Few e r social skills than the standardization group, 52 (63 % ) reported an Averag e level and 13 (16 % ) viewed their children as having Mor e social skills Internal reliabilities for the craniofacial sample and the standardization sample were .91 and .90 respectively Parent reported externali z ing and internali z ing behavior problems were also assessed and a total behavior problem score calculated. Cronbach s coefficient alphas were 78 for the externali z ing s cale 76 for the internali z ing scale, and .82 for the total behavior problem scale These compare favorably with those from the standardization sample which were .82 72, and .81, respectively. There is no statistically significant difference between the obtained mean of 102.84 (SD = 14 20) on the Total Behavioral Problems Scale and the normative sample mean of 100 (SD = 15), (80) = 1 8 n = 08; standardi z ed scores are not calculated for subscales. Behavioral Level placements for the externalizing and internali z ing subscales and the total behavioral problems scale are shown in Table 6

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Table 6 Behavioral Problem Levels for Externali z ing, Internalizing, and Total Behavioral Problems (N = 83) Behavioral Level Fewer Average More Externali z ing n % 7 64 10 8 77 12 Internali z ing n % 9 62 10 11 75 12 Group Comparisons Total n % 6 7 57 69 18 22 85 Institution, diagnostic category and gender comparisons were conducted on independent variable means to deter1nine if there were significant within group differences that would impact subsequent analyses and interpretation of results For variables with normal distributions either t-tests or ANOV As were performed Mann Whitney U and Kruskal-Wallis independent sample tests were performed on nonnormall y distributed variables With the exception of SES no significant differences were found on any of the variables used in tests of the hypotheses Thus, the data were pooled across these distinctions. As noted previously with regard to SES, there was a significant difference in SES between those adolescents from UF and those from USF. Hollingshead (1975) mean scores were 44.57 (SD = 12 07) for UF families 34.66 (SD = 11.29) for USF families and 38.56 (SD = 9 24) for families from Nemours Furthermore the only other significant institution diagnostic or gender group difference found among all the measures employed was on the SSRS-Parent Total Social Skills Scale, where

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standardized scores for males (M = 101.23, SD = 13.27) were significantly higher than scores for females (M = 93 86; SD = 16 79) 1 (80) = 2.18 .Q = 03) 86 Additionally, scores on independent and dependent variables were compared on the basis of participant's ethnicity and whether they had ever been diagnosed with a learning disability. The former was done to evaluate possible confounds due to racial or ethnically based experiences of prejudice and stigmatization Due to the relatively small percentage (15 o/ o) of ethnic minority adole s cents, participants were divided into only two groups Majority group adolescents (Caucasian) and Minority group adolescents (African-American, Hispanic-American and Other) Using these two groups, there were no statistically significant differences on age number of functional impairments, SES perceptions of stigmatization attributional style or any other independent or dependent variables with the exception of the PSSQ Externali zi ng Behavior Problem Scale and the related PSSQ Total Behavior Problem Scale 011 the PSSQ Externalizing Behavior Problem Scale Majority group adolescents scored significantly higher than Minority group adolescents (Majority M = 4 76; Minority M = 2 7 ; Externali z ing Mann-Whitney U : z = -2 91 p = .004) Majority group adolescents Total Behavior Problem Standard Scores (M = 104 44, SD = 14.8) were al s o significantly higher than Minority group adolescents standard scores (M = 95 8 ; SD = 8 7) t(79) = 2.99, n =. 005 Of interest given the negative correlation between SES and externalizing behavior problems in the sample, is the fact that families of Minority adolescents had a higher average SES than Majority adolescents, though the difference was not significant. Adolescent rated self concept was also higher among Minority than Majority participants while the reverse was true for self-ratings of appearance

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87 The posthoc decision to examine the relationship between learning disabilities (LD) and outcome variables was based on growing evidence for unusually high rates of learning disabilities among individuals with craniofacial conditions and a growing awareness of the need to explore the possible impact of learning disabilities on psychosocial adjustment in this population There were no significant differences among this sample's adolescents with and without LD in terms of age, SES overall attributional style, perceptions of stigmatization, and self-ratings of appearance and self-concept. However, significant differences between participants with and without learning disabilities were observed on ratings of social skills, internalizing behavior problems, and attributional style for negative events. Adolescents with learning disabilities rated themselves as having fewer social skills than did adolescents without learning disabilities, i (80) = -3.39, n = .001 Parents also rated their adolescents with LD as having fewer social skills, 1 (1,80) = -3.02, n = .003, and as having more internalizing problems than their nonlearning disabled peers (Mann-Whitney U ~ = -1.93; n = .05). In addition, the adolescents with LD had significantly higher CASQ scores for negative events than did those without learning disabilities, indicating that they have a greater tendency to attribute bad outcomes to internal, stable, and global causes (Mann-Whitney U = -2.60; n = 009) Intercorrelations of Variables A correlation matrix including each of the dependent variables, demographic characteristics, and other selected variables of interest is presented in Table 7. Pearson correlations were computed for norrnally distributed variables and Spearman correlations were computed for nonnonnally distributed variables. As a large number of correlations

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88 were computed, many of these associations may be due to chance. However, they are presented as an aid in interpreting the regression analyses and understanding patterns of association among variables. There were few significant associations between adolescent participant characteristics and other variables Among the variables of age, gender and SES, only the correlation between gender and SES was significant (r = -.22, 11 = .05). Males in the sample were from families with higher mean SES levels than were females. Higher SES was also associated with fewer number of functional impairments (r = -.29, 11 = .009), lower adolescent perceptions of stigmatization (I= -.34, n = .002), and reduced externalizing behavior problems (r = -.26, 11 = .016) as well as with higher levels of parent reported social skills (I = 30, 11 = .007). Increased number of functional impairments was negatively correlated with adolescent-rated social skills (r = -.26, n = .02). However and contrary to expectations from previous literature, there were no significant associations between number of functional impairments and adolescent perceptions of stigmati z ation (r = 00, 11 = 99), adolescent self-reported physical appearance (r = 08, 11 = .55) and self-concept (r = -.09, 11 = .52), or parent reported internalizing (r = .21, 11 = .06), externalizing (r = .16, 11 = 14), or total behavior problems (r = .20, n = 08). In contrast, adolescent perceptions of stigmatization related to their facial difference were significantly and highly correlated with a large number of variables. Higher ratings of perceived stigmatization were associated with higher levels of externalizing (r = .28, n = .01) and internalizing (r = .34, n = 002) behavior problems and

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Table 7 Correlations of Variables Age Gender SES # Functional Impairments Adolescent Social Perceptions Parent Social Perception Adolescent Attributional Style (CASQ) Parent Attributional Style (P ASQ) Age 1.00 .05 -.01 .01 -.02 1 5 -.07 -.07 Gender SES 1.00 -.22* 1.00 .04 -.29** .08 -.34** .15 -. 14 .05 .OS .04 .05 a Adolescent # Functional Social Impairments Perception 1.00 .00 1.00 20 53** -.17 -.47** 10 05 P arent Social Per ce ption 1 00 .5 4** .08 Adolescent Parent Attributional Attributional Style (CASQ) Style (PASQ) 1 .0 0 .2 7 8 1 00 Note s.: a Pearson correlatio n All other correlatio n coefficients are Spearman s r sVariables in bold type are u sed in multiple regression analy ses. y < .05 ; ** 12 < .0l. 00 \.0

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Table 7 -Correlations of Variables {continued) SDQ-Il Physical Appearance SDQ-Il General Self SSRS-Student Report Social Skills SSRS-Parent Report Social Skill s Externalizing Problems Internalizing Problems Total Behavior Problem s PIRPeer Network Age -.02 .07 .10 .05 -.06 .10 01 .20 Gender SES -.17 .20 -.02 .27* .10 .19 a 1 3 39 a ** .13 -.26 .07 -.20 .14 25 -.04 .24 Adolescent # Functional Social Impairments Perception -.08 -.63** -.09 .. 50** -.26* -.34** 22 -.40** .16 .28 .21 .34** .20 .39** -.19 -.10 Parent Social Perception 49** 45** -.35** -.46** .32** 64** .54** -.11 Adolescent Parent Attributional Attributional Style (CASQ) Style (PASQ) .51 ** 00 .58** .14 .51 a** 00 a .38 3 ** 11 a -.15 04 -.48** 10 -.38** 06 .18 -.13 Note s.: a Pear s on correlation. All other correlation coefficients are Spea11nan' s rs. Variables in bold type are used in multiple regre ss ion ana l yses.* R < .05; ** R < 01 \0 0

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Table 7 -Correlations of Variables (continued) SDQ-11 Physical SDQ-11 Physical Appearance Appearance 1.00 SDQ-Il General Self Concept SSRSStudent Report Social Skills SSRSParent Report Social Skill s Externalizing Problems Internalizing Problems Total Behavior Problem s .62** .36** 40** -.28** -.44** -.41 ** PIR-Peer Network .17 SDQ-11 General Self Concept 1.00 .52** .59** -.43** -.46** -.55** -.08 SSRS-Student SSRS-Parent Report Social Skills 1.00 47 a ** . 32** -.32** -.39** .15 Report Social Skill s 1.00 -.53** -.55** 63** .15 SSRS Externalizing Problems 1.00 -.38** 80** SSRS Internalizing Problems 1.00 .82** -.29** -.20 SSRS-Total PIRBehavior Problems 1 00 -.28** Peer Network 1.00 Note s : a Pear s on correlation. All other correlation coefficient s are Spearman s rs. Variable s in bold type are u s ed in multiple regre ss ion anal ys e s. Q < .05 ; ** Q < 01 \0 1---'

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92 lower ratings of physical appearance (r = -.63, n =. 000), self-concept (r = -.50, Q = .000), and social skills (r = -.34, Q = .002 and 40, n = .000, for adolescents and parents respectively). Greater perceived stigmatization was also significantly related to a less optimistic attributional style (r = 47, Q = .000), as higher scores on the CASQ Overall scale reflect a more positive or optimistic approach The association between parent and adolescent perceptions of stigmatization was also highly significant (r = .53, n = .000). Furtherrnore, correlations between parent reports of perceived stigmatization and other variables are similar to adolescent perceptions. To ascertain those psychological and interpersonal variables that are related to attributional style, correlations were calculated using not only the composite attributional style score but also the attributional style scores for both positive and negative events To control for the family-wise error rate, a Bonferroni adjustment was made (.05 / 13 =. 004); correlations were considered statistically significant only if Q .004. These results are given in Table 8. None of the demographic or condition related variables were significantly correlated with the adolescents' attributional style for either positive or negative events, or with their composite attributional style. However, as with adolescent perceptions of stigmatization, attributional style was significantly and highly correlated with a number of psychosocial variables. Higher scores on both the positive events and composite scales are generally associated with more adaptive attributional styles. Thus, more positive optimistic attributions were positively correlated with self-reported physical appearance, self-concept, and social skills, and negatively correlated with perceptions of stigmatization and parent-reported internalizing behavior problems A more pessimistic

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93 Table 8 Correlations of CASQ Scales and Variables CASQ Attributional Style Positive Negative Composite Age -.09 .08 -.07 Gender .17 .06 .05 SES .05 02 .05 # Functional Impairments 12 21 17 # Hospitalizations .04 .00 .04 # Surgeries 01 -.04 .04 Social Perceptions 45** .29 47** SDQ Physical Appearance .43** -.31 ** 51 ** SDQ General Self 53** -.32** .58** CSSQ Social Skills .47** -.41 ** .51 ** PSSQ Externali z ing -.18 07 -.15 PSSQ Internali z ing -.43** .32** -.48** PIR Peer Network 09 18 .18 Spearman's correlations. ** n... .004 attributional style was significantly associated with lower ratings of physical appearance self-concept and social skills as well as higher levels of internalizing behaviors. Correlations between the three attributional style variables and those of adolescent externali zi ng behavior problems and peer network were not significant As with perceptions of stigmatization, composite adolescent attributional style was significantly and positively correlated with parental composite attributional style (r = 27; 12 < .05). However, in contrast to parent perceptions of stigmatization, none of the other adolescent psychosocial variables were significantly correlated with parental attributional style. The correlation between adolescent self-reported physical appearance and general self concept was highly significant (r = 62, n = .000) Higher self-rated physical

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94 appearance was also positively correlated with self and parentreported social skills, (r = 36, ll = .000 and r = .40, n = 000 respectively) and negatively correlated with externalizing (r = -.28, ll = .01) and internalizing (r = 44 ll = .000) behavior problems. Although the values of the correlations were different, the same general pattern of association was found between self-concept and the variables of student and parent reported socia l skills (r = .52 ll = 000 and 59, ll = 000, respectively) and behavioral problems (L = -.43, ll = .000 for externalizing and r = -.46, n = .000 for internalizing) SSRS-Parent Report Social Skills was also highly correlated with a large number of variables, including adolescent se lf-r eport ratings of social skills (r = 47, ll = 000) The number of friends included in the adolescent's peer network (PIR-Peer Network) was positively correlated with SES (r = 24, n = .03 ) and negatively correlated with externalizing behavior problems (r = -.29, n = .008). Tests of the Hypotheses Prior to conducting the regression analyses testing the specific hypotheses of the study, variables were evaluated for evidence of multicollinearity and presence of suppressor variables that could negatively impact results and interpretation. Multicollinearity refers to the intercorrelations among the predictors in a multiple regression equation. When the variables are very highly correlated the variables are redundant and all are not needed in the same analysis. Furthermore, in addition to containing redundant information having variables that are highly correlated in the same multiple regression equation inflates the si z e of the error term and weakens the analysis Bivariate correlations of r > .70 (Tabachnik& Fidell 2001) are suggestive that the analysis may be affected by problems with multicollinearity. A suppressor variable is an

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95 independent variable that is useful in predicting the dependent variable and increasing the multiple .R 2 due to its correlations with other independent variables. It is called a suppressor variable because it suppresses variance that is irrelevant to the prediction of the dependent variable, that is it enhances the importance of the other independent variables by virtue of suppression of irrelevant variance in them. Such variables may lead to enhanced prediction of the dependent variable but interpretation of the contribution of the independent variables can become more complicated. From the pattern of regression coefficients, beta weights, variable correlations, and results of specific screening tests for such problems ( see Licht, 2000, and Tabachnik & Fidell, 2001 for details) no problems with either multicollinearity or suppressor variables in the data set were found. Hypotheses I and II: Prediction of Dependent Variables from thelndependent Variables A total of six hierarchical multiple regression analyses were conducted to test hypotl1eses regarding the significance of age, gender, SES number of functional impairments, and perceived physical appearance in predicting general self-concept, social adjustment, behavior problems, and perception s of st igmatization. Each of the outcome varia bles (a) SSRS-Student Social Skills sca le ; (b) SDQ-II General Self scale; (c) SSRS Parent Internali zing Problems subscale; (d) SSRS-Parent Externa li zing Problems su b sca le ; (e) PIR-Peer Network; and (f) Adolescent Social Perception Questionnaire (ASPQ) was regressed on the independent variables. The demographic variables (age, gender, SES) were entered first as a block followed by the number of functional impairments and, lastly, by perceived physical appearance. Thus the order of entry of variables was controlled, with those of le sser importance entered first and the

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96 hypothesized major variable perceived physical appearance entered last Tables 9-14 display the coefficients and model summaries for each set of analyses. The hypothesis that demographic variables and number of functional impairments would not significantly predict outcome variables was fully supported for the dependent variables of general self-concept (SDQ-II) and internali z ing behavior (SSRS-Parent) problems (Tables 9 and 10, respectively) Furthermore the hypothesis that greater satisfaction with physical appearance would predict higher general self-concept and lower internalizing behavior problems was also supported. The addition of physical attractiveness to the analyses at step 3 resulted in significant increments in R 2 for both of the outcome variables (R 2 c hn g = .52 for self concept and R 2 chng = .20 for internalizing behaviors) and significantly improved the predictive ability for both full models. After step 3, with physical attractiveness in the equation R 2 = .57, E (5,77) = 20.38, 12 < .01 for self-concept and R 2 = 28, E(5 77) = 6.03, 12 <. 01 for internalizing behaviors. Results for the other dependent variables were mixed. Physical attractiveness contributed significantly to the prediction of measures of social skills externalizing behavior problems peer network and perceptions of stigmati z ation but, contrary to the hypothesis other adolescent variables were also significant Both perceived attractiveness and number of functional impairments significantly predicted social adjustment as measured by adolescent ratings of their social skills (Table 11 ). The addition of number of functional impairments to the model resulted in R2 = 12 E (3 77) = 2.53 u < .5. The subsequent addition of physical attractiveness resulted in R 2 = .22, F(5, 77) = 4 38, 12 <. 0 1. For the other measure of social adjustment the adolescent's peer network (PIRPeer Network ; Table 12) both SES and age contributed significantly at step 1 only age was

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Table 9 Hierarchical Multiple Regression Analysis for Variables Predicting Adolescent Self-Concept (SDQ II General SelO (N = 83) Variable Step 1 SES Gender Age Model Summary Step 2 SES Gender Age Functional Impairn1ents Model Summary Step 3 SES Gender Age Functional Impair1nents Physical Appearance Model Summary ll < .05 ** p < .01 Coefficients B SEB .14 .87 62 14 .87 .62 11 .006 1.83 .75 -.25 .64 08 2.01 .60 09 2.03 61 1.22 06 1.38 41 .83 07 0. .20 .05 11 .20 05 .11 01 .09 10 .14 02 73** R R 2 22 05 22 .05 .75 57 Model Summary Ad j. R 2 R 2 chn g F chng Fmodel 01 .05 1.33 1 33 00 -.00 01 99 54 52 93.32** 20 38** '-0 -..J

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Ta bl e 10 Hierarchical M u lti pl e R egression Ana ly sis for Va ri a bl es P redicting Interna l i z ing Behav i or P r o bl ems (SS R S -In tema l i z ing ; N = 83) Variab l e Step 1 SES Gen d er Age Mo d e l Summary Step 2. SES Ge n der Age F un c ti ona l Itnpair1 1 1ents Mode l Summary Step 3 SES Gender Age Functiona l Impairments Ph ys i ca l Appearance Mode l Summary n < .05 ** n < 01 Coefficients B SEB -.004 23 1 9 -. 004 24 .19 25 002 008 1 7 27 11 02 .5 6 1 7 02 56 .1 7 .34 02 50 .15 30 .02 12 -.22* .05 12 .20 05 .12 08 -.14 02 11 09 46** Mode l Summary R R 2 Ad j. R 2 R 2 chn g. F chn g F m odel 27 08 04 08 2 .1 3 2. 1 3 29 08 .03 .0 1 54 1 .72 53 .28 .24 20 2 1. 46** 6.03** \0 00

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Table 11 Hierarchical Multiple Regression Analysis for Variables Predicting Adolescent Social Skills (N = 83) Variable Step 1 SES Gender Age Model Summary Step 2 SES Gender Age Functional Impairments Model Summary Step 3 SES Gender Age Functiona l Impairments Physical Appearance Model Summary n < o5 ** n < 01 Coefficients B SEB 18 2.67 .40 .13 2.54 .39 -2.41 .09 2.98 .44 -2.48 29 08 2.0 60 08 1.96 .59 1 18 .08 1.85 .56 1.11 .09 ft 24* .15 07 .18 .14 07 -.23* .13 .17 .08 -.23* .33** R R 2 26 .07 .34 .12 .47 22 Model Summary Adj. R 2 R 2 chng .03 07 .07 .05 .17 11 F c hng. 1 91 4.19* 10 55** F model -----. 1.91 2.53* 4.38** '

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Table 12 Hierarchical Multiple Regression Analysis for Variables Predicting Ado l escent Peer Network (PIR-Peer Network) (N = 83} Variable Step 1 SES Gender Age Model Summary Step 2 SES Gender Age Functional Impairments Model Summary Step 3 SES Gender Age Functional Impair rnents Physical Appearance Model Summary n < 05 ** n .01 Coefficients B SEB fl 09 05 .22* 50 1 .11 05 .72 33 23* 07 .05 .18 55 1 10 05 72 .33 .23* -.89 .66 -. 15 .06 05 .15 .39 1.10 -.04 .74 .32 .24* -.92 .65 -.15 .11 .05 22* Model Summary R R 2 Adj.R 2 R 2 chng F chng F model .32 10 .0 7 .10 3 00* 3 00* 35 12 .08 .02 1.82 2 73* .41 17 11 05 4.12* 3.09** I-"" 0 0

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Table 13 Hierarchical Multiple Regression Analysis for Variables Predicting External i zing Behavior Problems (SSRS-Externali zing ; N = 83) Variable Step 1 SES Gender Age Model Summary Step 2 SES Gender Age Functional Impairments Model Summary Step 3 SES Gender Age Functional Impairments Physical Appearance Model Summary p 05 ** p < 01 Coefficients B SEB ---. 06 .33 -.08 -.05 .35 -.08 26 04 .23 09 .28 07 .02 55 16 .02 .55 16 .33 02 52 16 .31 03 fl 28* .07 -.05 .26* 07 -. 05 09 -.22* .0 5 -.06 .09 -.31 ** Model Summary R R Adj .R 2 R 2 ch ng F chn g F model 31 .09 06 .09 2 74* 2.74* .32 .10 .06 01 .635 2.20 .44 .19 14 .09 8 88** 3.72** 0

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Table 14 Hierarchical Multiple Regression Analysis for Variables Predicting Adolescent Perceived Stig1na (ASPQ} (N = 83} Variable Step 1 SES Gender Age Model Summary Step 2 SES Gender Age Functional Impairments Model Summary Step 3 SES Gender Age Functional Impairments Physical Appearance Model Summary *I! < .05 ** p < 01 Coefficients B SEB 16 .22 -.21 17 20 -.22 48 12 -. 26 -.31 45 -.33 05 1.17 .35 .05 1 18 35 .71 04 .91 27 .55 .05 ii -.36** .02 -.07 37** 02 07 07 27** -.02 -.09 -.07 61 ** R .36 .37 .70 Model Summary 2 d 2 2 F s F R A J R R c hng chn g 1g. chn g 13 10 13 4 02 01 14 .09 01 .46 .50 .49 .46 .36 54 19 00** F m ode l 4 02** 3.10* 15.01** 0 N

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103 significant at step 2, and both age and physical appearance were significant at step 3 Those who rated themselves more attractively, and younger children, reported a larger peer network. In the final model with all variables entered R 2 = .17 E (5,77) = 3 09 12 s .. 05. Both SES and physical appearance significantly predicted externalizing behavior problems (SSRS Externalizing) and adolescent perceptions of stigmatization (ASPQ) Results of the hierarchical regression for externalizing behavior (Table 13) indicate that R 2 was significant at the end of step 1 (R 2 = 09) and step 3 (R 2 = .19). The addition of functional impair1nents in step 2 did not reliably improve R 2 in the final model for externali z ing behaviors, E (5 77) = 3.72, 12 s .01. In predicting perceived stigma (Table 14), the demographic variable of SES significantly contributed to prediction at all three steps The addition of physical appearance resulted in a substantial and statistically significant increase in R 2 from R 2 = 14 at step 2 to R 2 = 49 at step 3 (E = 54. 19, 12 <. 0l ). In summary the hypothesis that there would be a positive relationship between perceived physical appearance and both social skills and peer relations was supported as was the hypothesized negative relationship between appearance and externalizing behavior problems Greater satisfaction with physical appearance also predicted lower levels of perceived stigmatization and accounted for 46 % of the variance in that variable. The multiple regression results suggest that perceptions of physical appearance are highly predictive of self-concept, behavioral and social adjustment, and views regarding s tigmatization among adolescents with facial differences Other adolescent and demographic characteristics appear to be of lesser importance

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104 Hypothesis III and IV: Perceived Stigma as Predictor Variable The hypothesis that higher perceived stigma will statistically predict lower general self-concept and social adjustment and higher externalizing and internalizing behavior problems was supported in this sample Results of the bivariate regression analyses are given in Table 15. Perceived stigma accounted for between 12% and 32 % of the variance in these variables (n < .001) Not supported was the hypothesized negative relationship between perceived stigma and peer network, R 2 = .04 adjusted R 2 = .03 E ( l 82) = 3.55, n = 06. Standard multiple regression analysis was employed to determine if perceived stigmatization adds significantly to the prediction of self-concept and adjustment beyond the predictability afforded by the independent variables of age gender, SES, number of functional impairments, and perceived appearance. As shown in Table 16, perceived stigma contributed significantly only to the prediction of adolescent social skills (.Ii 2 = 04) Thus, the hypothesis was not supported for self-concept, internalizing and externalizing behavior problems, and peer network. With regard to self-concept and internali z ing behavior, physical appearance contributed significantly to predicting general self-concept (fil: i 2 = .24) and internali z ing behaviors (fil: i 2 = .08) None of the independent variables made a statistically significant individual contribution to the prediction of externalizing behaviors though the variables combined accounted for 20%ofthe variance and were significant at n = 01, (E 6,76) = 3.23). Age was the only significant variable in the prediction of peer network (fil: 1 2 = 05) A posthoc comparison of results from standard and forward statistical regre s sion analysis was conducted to determine if there were any differences in independent

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Table 15 Regression of Dependent Variables on Perceived Stigma (Mediation Model Step 2) ( Child/Adolescent Social Perception Questionnaire; N = 83} Variable SSRS-Social Skills SDQ-II General Self SSRS-Intemalizing Problems SSRS-Extemalizing Problems PIR-Peer Network Coefficients B SEB 65 -.92 .19 16 19 17 15 .05 .05 10 13. -. 40 -.57 .41 35 .2 1 R .4 0 .57 .41 .35 21 Model Summary R 2 -Adj R 2 F 16 32 17 .12 04 15 31 16 .1 1 .03 15 05 37 89 16 04 11 .51 3.55 Sig. .00 00 .00 00 .06 0 Ul

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Table 16 Mu l tiple Regression Analysis for Variables Predicting Adolescent Social and Behavioral Ad j ustment (N = 83) Variable B SSRS-SOCIAL SKILLS Age 31 Gender 2.84 SES 04 Functional lmpaitments -2 66 Physical Appearance 14 Perceived Stigma 46 Model Summary SDQ II GENERAL SELF CONCEPT Age .6 1 Gender 1 44 SES .015 Functional Impa.i:r111ents -.41 Pl1ysical Appearance .56 Perceived Stigma -.25 Model Summary SSRS-INTERNALIZING BEHAVIORS Age -.18 Gender 09 SES 02 Functional Impairments .30 Physical Appearance -.09 Perceived Stigma 06 Model Summary p os ; ** n 01 Coefficients SEB 55 1.82 .08 1.10 .11 .23 42 1 40 06 84 09 18 .15 .50 .02 .30 03 .06 Model Summary 12 R R 2 Ad j .R 2 F 06 12 .05 -.25* 16 -. 28* .51 26 20 4 49 .1 1 08 .02 -.04 64** -.15 .76 .57 .54 16 .9 1 12 02 10 10 -.38** .13 .76 .57 54 1 6.91 Sig.F .00** .00** 00** 0 0\

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Table 16 (continued) Multiple Regression Analysis for Variables Predicting Adolescent Social and Behavioral Adjustment (N = 83) Variable B SSRS-EXTERNALIZING BERA VIORS Age Gender SES Functional Impai1ments Physical Appearance Perceived Stigma Model Summary PIR-PEER NETWORK Age Gender SES Functional Impait rnents Physical Appearance Perceived Stigma Model Summary p 05 ** p 01 -.08 .25 -.04 30 -.06 06 .74 -.39 06 91 -.11 .009 Coefficients SEB_ 16 52 02 32 03 07 .33 1 09 05 .66 07 .14 Model Summary fi R R 2 Adj.R 2 F 05 05 18 .10 23 .13 45 .20 14 3 23 24 04 15 -.15 .22 .01 41 17 10 2054 Sig F 01 ** 03* ....... 0 -..)

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108 variables chosen as significant predictors of the dependent variables. Though statistical regression analysis is essentially atheortical, its utility in model-building and prediction has been noted (Tabachnik & Fidell 2001 ). Results for the prediction of social skills genera l self-concept, and internalizing behavior problems were exactly the same using both methods: perceptions of s tigmati zation, appearance, and number of functional impairments were significant For externalizing bel1avior problems, adolescent perceptions of stigmatization were statistically significant using forward statistical regression and accounted for 11 /o of the variance. No individual variables met criteria fo r inclusion in predicting adolescent peer network with either method. Thus, results from this sample suggest that an adolescent's perception of their physical appearance and stigmatization, together with the number of functional impairments they have are important in predicting social and behavioral adjustment Hypothesis V: Perceived Stigmatization and Attributional Style Testing Mediation Baron and Kenny (1986) enumerated a series of steps to test for and establish mediation To test for mediation, the following standard regression analyses were performed: 1) regression of attributional style on perceived stigma; (2) regression of each psychological outcome variable on perceived stigma; and, (3) regression of each psychological outcome variable on both p e rceived stigma and attributional style. In order to establish mediation, the following conditions needed to be met (See Figure 2): (1) adolescent perceived stigma (ASPQ) must affect attributional style (Path A); (2) adolescent perceived stigma (ASPQ) must affect each of the outcome variables (SDQ-II General Self, SSRS-Social Skills SSRS-Intemali z ing and SSRS-Extemalizing Behavioral Problems, and PIR-Peer Network) (Path B) ; and, (3) attributional style must

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Perceived Stigma A Attributional Style B Figure 2. Mediational Model Psycho logical Adjustment 109 affect each dependent variable in the third equation (Path C). In order for mediation to be demonstrated the effect of perceived stigma on outcome variables must be less in the third equation than in the second. Perfect mediation exits if the effect of perceived stigma is reduced to zero in the presence of attributional style. Results of the first equation, given in Table 17, indicate that perceived stigma does indeed affect attributional style Approximately 27o/o of the variance in attributional style can be predicted by perceptions of stigmatization Regression of the dependent variables on the independent variablethe second equation showed that perceptions of stigmatization had a statistically significant affect on measures of social skill, self-concept internalizing and externalizing behaviors but did not affect this sample's Table 17 Regression of Attributional Style (CASQ) on Perceived Stigma: Mediation Model Step 1 (ASPQ; N = 83) Variable Perceived Stigma (ASPQ) Coefficients B SEB fl -.54 .10 -.52. Model Summary R 2 Adj R 2 F Sig .27 .26 29.23 .00

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110 measure of peer network (see Table 15). Thus, the hypothesis that attributional style mediates the relationship between perceived stigma and peer network is not supported in this sample Results of the regression equations testing the hypothesis that attributional style mediates the relationship between perceived stigma and outcome variables are presented in Table 18 The mediational hypothesis was fully supported for social skills and for internalizing behavior problems In both cases, attributional style significantly predicted outcome variables while the contribution of perceptions of stigmatization were reduced to nonsignificant levels. For the outcome variable of general self-concept, perceptions of stigmatization remains a significant predictor eve11 after attributional style is added but its influence decreases from p = 57 to p = -.34. Thus, while not as potent a mediator as with the variables of social skills and internalizing behaviors, attributional style appears to attenuate the effects of stigmati z ation on general self-concept in this sample of adolescents with facial differences. It is interesting that together, perceptions of stigmati z ation and attributional style account for a full 46% of the variance in self concept in this sample. Finally results suggest that the effect of perceived stigma on externalizing behavior does not appear to be mediated by attributional style. The independent variable of perceived stigma remains significant (I! = .01) and the decrease in influence is extremely small (from p = 35 to p = 34) In sumn1ary results suggest that attributional style accounts for the effects of perceived stigmatization on specific outcome variables among adolescents with facial differences. This mediating effect is particularly strong for social adjustment as

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Table 18 Multiple Regression Tests of the Hypothesis that Attributional Style Mediates Perceptions of Stigmatization (Mediation Model Step 3} (N = 83} Coefficient s Model Summary Variables B SE B il t Sig R R 2 -Adi R 2 F SSRS SO C IAL SKILLS Perceived Stigma Attributional Style Model Summary SDQ-II GENERAL SELF Perceived Stigma Attributional Style Model Summary SSRS INTERNALIZING Perceived Stigma Attributional Style Model Summary 30 66 -.55 .69 .009 16 .18 17 .16 15 05 .05 18 -1.64 42 3.77 -.34 3 .53 44 4.58 .22 1 93 -.37 -3 32 lO a .00 oo b 00 06a 00 .53 .68 52 28 46 27 27 15 88 .45 34 13 25 14.53 Sig .00 .00 .00 Notes: a Stigmati z ation no longer significant 6" Stigmati z ation still significant but Beta value decreased with attributional style added Table 18 continued ........ ........ __.

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Table 18 (continued) Multiple Regression Test of the Hypothesis that Attributional Style Mediates Perceptions of Stigmatization, (Mediation Model Step 3} (N = 83) Coefficients Model Summary Variables B SE B (i t Sig R R 2 -Adj.R 2 F SSRS EXTERNALIZING Perceived Stigma Attributional Style Model Summary PIR PEER NETWORK Perceived Stigma Attributional Style Model Summary 15 -.01 13 12 06 .05 12 .11 .34 03 2 76 -.26 14 -1.07 .13 1 .06 .01 b .80 .29 30 .35 .2 4 .13 10 .06 .03 Notes 13 Stigmatization still significant Beta weight shows s light decrea se in with addition of attributional style. 5072 2.33 Sig. 01 10 ...... ...... N

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113 measured by adolescent self-reported social skills ru1d for parent-reported internali z ing behavior problems. It appears to hav e less impact on adole s cent self-concept, and no significant impact on e ither externali z ing behavior s or extent of adolescent s peer network

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CHAPTER6 DISCUSSION This study examined the relationships among demographic and condition variables perceptions of stigmati z ation attributional style, self-concept and social and behavioral adjustment in adolescents with facial differences. Of particular interest was whether attributional style acts to mediate the relationship between perceived stigma and selected outcome variables In addressing these issues an attempt was made to quantify the adolescents perceptions of stigmatization and to explore the association between their perceptions and attributions and those of their parent or guardian As the constructs of perceived stigmatization and attributional style have not previously been empirically s tudied in this population they will be discussed frrst followed by results of specific hypotheses strengths and limitations of this investigation and implications for intervention and further research. Perceptions of Stigmatization Any attempt to quantify something st1ch as perceptions of stigmatization is e xtremely difficult and must, of necessity provide only a limited definition of a very broad concept. The mea.sure of perceived stigma u s ed here was composed of a set of items that were narrowly focused on the social and peer interaction aspects of stigma Perceptions of stigmati z ation in other areas (teacher-student interactions public encounters with strangers, etc ) were not addressed Given the effect stiginatization is purported to have on the adjustment of individuals with facial differences, the paucity of 114

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115 empirical data on both ' felt' and ' enacted'' experience s of stigmatization among individuals with facial differences is remarkable Thus these results will be discussed in the context of what is known about perceptions o f s tigmati z ation in other illnes s es particularly epilepsy. Based on these results 'felt '' stigmati z ation in everyday social situations is clearly a s ignificant reality for mo s t adole s cents with craniofacial conditions. The overwhelming majority of re s pondents 83 % reported some perceptions of b e in g s tigmati z ed as a result of their facial difference Only 14 of the 83 adolescents (17 % ) reported no such perceptions However, although there were wide variations in the amount of perceived stigma, the mean for this sample (6.6 out of a possible 20) suggests that most adolescents reported low to moderate amounts of such experiences When collapsed into three descriptive categories (low, moderate high) based on total scores 55 % reported relatively low levels (total scores 0-6 ), 35 % of the sample reported a moderate level of stigmati z ation (scored 7-13), and 10 % reported a high level of perceived stigma. Ryan et al (1980) also found tremendous variation in the extent of perceived s tigma reported by their sample of 445 adults with epilep s y However, a much smaller number of participants in both the Ryan et al and Westbrook et al (1992) studies reported feeling stigmatized in social situations than did so in this study. In the Ryan et al. study fully 65 % answered '' never'' to all items ass e ssing feelings of stigmatization in various situations And although the measure employed by Ryan et al differed from the one used in this study, Westbrook et al. obtained equivalent results using a questionnaire essentially identical to the one employed here An avera g e of 65 % of the adolescent

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116 participants in the Westbrook et al. study re s ponded ''never'' on items assessing whether they felt their epilep sy affected whether people want e d to be friends with them liked them or ask e d them to parties or out on dates In thi s s ample of adolescents with facial differences the frequency of ''never' responses to any individual question averaged only 26 % Thus it appears that adolescents with craniofacial conditions experience more stigmati z ation in social situations than those with e pilepsy long considered one of the most stigmati z ed of chronic co11dition s One reason for the significant difference in perceived stigmati z ation between the two conditions may be that epilepsy is easier to conceal particularly during initial contact, than are the overwhelming majority of craniofacial conditions. As noted by Jone s et al (1984), concealability is one of the attributes de e med critical to understanding the impact of a given stigma in social situations Individuals with epilepsy are more likely to have control over disclosing their condition than are adolescents with facial differences The latter are literally ''faced'' with revealing their condition in virtually every social encounter regardless of length of contact or level of intimacy. In the Westbrook et al. (1992) study 1nore than half of the r e spondents reported that the y often or sometimes keep their epilepsy a secret and onl y 19 % reported involuntary disclosure of their epilep s y (because of public sei z ure ). In addition aestl1etic factors may play a role in the differing levels of perceived stigma reported by adolescents with epilepsy and c raniofacial conditions Although seizures particularly tonic clonic may be con s idered 'unattractive' ', most people who interact with individuals with epilep s y are unlikel y to ever witness such an event In contrast, differential treatment of 'unattractive ' individuals, particularly those with facial

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117 differences is well documented. These results suggest that aesthetic factors and concealability may indeed play important roles in the level of stigmatization individuals expenence Age, gender, ethnic / racial identity and number of functional impairments, l1ospitalizations or surgeries were not significantly associated with perceived stigma. In contrast, Westbrook et al. (1992), in their sample of 12-20 year olds, found that younger subjects were more likely to report that they feel stigmatized by their epilepsy, and perceptions of stigmatization also varied with age in the Ryan et al (1980) study. The absence of an age effect in this study may be due to the rather limited range (13 to 18 ye ars old). It appears that, despite significant developmental changes from early to late adolescence, a significant commonality of experience exists throughout the middle and high school years. This commonality of experience also seems to extend across racial/ethnic identities Although the total number of non-Caucasian participants was relatively small (203/o), the lack of significant differences between Caucasian and non Caucasian adolescents suggests that the stigmatization reported was neither confounded nor compounded by racial or ethnic identity discrimination. There were also no significant differences in amount of perceived stigma among the three diagnostic groups Group I (Cleft lip) mean was 6 5 (SD = 5.4) Group II (Craniofacial syndrome) mean was 5.6 (SD = 3.7), and Group III (Other) mean was 8.0 (SD= 5.9). The lack of significant association between perceived stigmatization and number of functional impairments hospitalizations and s ur ge ries, as well as diagnostic category parallels the results of epilepsy studies which have failed to find any direct connection between ''objective'' criteria of severity (seizure rate or type) and stigma. Accumulated

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118 evidence from the epilep s y literature s tron g l y supports the idea that an individual's s ocial-p s ycholo g ical environment is more important than the physical or biological characteristics of their diseas e in their perceptions of s tigmatization (Arnston et al. 1986; Her1nan et al ., 1990 ; Ryan et al. 1980; Westbrook et al 1992) The evidence from this study indicates that the same is true for adolescent s with facial differences. Significant negative associations were found between perceived stigma and SES s ocial skills attributional style and self-ratin g s of physical appearance and self-concept Externali z ing and internalizing behavior problems were positively and significantly, related to perceived stigma The onl y outcome variable not significantly associated with perceived stigma was the adolescent s peer network In W e stbrook et al 1992 study there was no significant association between SES and p e rceived stigma and little data on the relationsmp between the two variables exists in re s earch with either the craniofacial or epilepsy populations. It may be that familie s with higher SES have greater resources and flexibility that allow them to either '' shield ' their child from stigmatizing experiences and/or promote the de v elopment of skills to cope more effectively with such experience s. As SES and peer network are significantly and positively correlated, it is possible that such 'buffering ' capabilities of higher SES al s o contribute to the absence of association between perceived stigma and peer network Adole s cents from higher SES families ma y have more options for social participation in athletic, artistic and other organized activities where the s ignificance of their facial difference is lessened In interpreting the significant relationship b e tween stigma and appearance it is important to remember that both reflect the adolescent s perceptions no attempt was made to '' objectivel y ' quantify appearance Highl y significant relationships between

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119 stigma and other intraindividual, personal characteristics as well as indexes of psychological adjustment are well documented. In epilepsy, self-perceived stigma has been found to be negatively and significantly related to self-esteem, social skills and life satisfaction and positively related to psychopathology behavior problems, perceived helplessness depression, and anxiety (Arnston et al. 1986; Herrr1an et al. 1990; Ryan et al ., 1980; Westbrook et al 1992) As hypothesized there was a significant positive correlation between parents' and adolescents' perceptions of stigmatization (r = .53). However, the mean difference between parent and adolescent perceptions was also significant, with adolescents reporting significantly higher levels of perceived stigma than their parents or guardians This combination suggests that West's ( 19 86) notion of parents as ''stigma coaches'', derived from research into families with epilepsy may not be as applicable to families of children and adolescents with facial differences. Given the potential for concealment in epilepsy West noted that the' ... attitude of parents appears to be crucially related to the extent of the felt stigma and the strategy adopted to manage it ' (p.251 ). Management strategies in craniofacial conditions are likely to be more centered on the type of information disclosed and possible responses to teasing or rejection, not whether to disclose. Thus parents of children with facial anomalies may be less influential in conveying the ''felt'' stigma or ''deep sense of shame'' frequently noted in some families of children with epilepsy In fact, parents and other adults (teachers craniofacial treatment team members) may be underestimating not only these adolescents' perceptions of stigmati z ation but the amount of ''enacted s tigma'' in their lives as well

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120 Despite the lin1ited definition of stigma and the difficulty quantifying it, this initial exploration of the construct of perceived stigma provides pertinent informatio11. First, while the overwhelming majority of adolescents with facial differences report feeling stigmatized in social situations such perceptions are not universally experienced And, among those who do perceive stigmatization, the majority report relatively low to moderate levels. However, as perceptions of stigmatization are significantly correlated with self-concept and adjustment variables, even relatively low levels may have serious interpersonal and intrapersonal consequences Reis and Hodgins (1992) noted that people with facial anomalies may receive ambival e nt conflict-laden responses, especially from strangers, and that such responses may engender ''learned helplessness'' in the social domain thus increasing the risk for depression social anxiety, and other internalizing problems Second similar to findings from research on individuals with epilepsy, perceptions of stigmatization are not significantly associated with condition-related complications such as diagnosis or severity, as measured by number of impairments, hospitali za tions, or surgeries Thus, although traditional s tigma theory does not clearly incorporate personal subject characteristics that act to moderate the hypothesized relationships it is clear that personality traits self-perceptions, cognitive evaluations, or general coping styles may attenuate not only condition related variables themselves but the experiences of stigmatization. Attributional Style Although an assessment of attributional style's role as a mediator between perceptions of stigmatization and p syc hosocial outcome was one of the primary goals of this study, it also sought to explore the construct of attributional or explanatory style

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121 among adolescents with facial differences and its relationship to general self-concept and beha v ioral and social adjustment Despite heighten e d interest in cognitive processes across a wide range of illness and disability conditions little is known about the attributions of adolescents with facial differences and their interpersonal correlates The Children's Attributional Style Questionnaire, originally designed to test the attributional reformulation of the learned helplessness model of depression in children 8 to 18 years old (Abramson et al 1978) is the main measure of attributional style for children and was used in this study. It provides composite positive composite negative, and overall attributional style scores Numerous cross-sectional and longitudinal studies have explored the link between attributional style and depression, focusing primarily upon attributions for negative events. Recently increased attention has been paid to correlations between overall scores and depression as well as to the association between all three attributional styles and various measures of psychological adjustment. The traditional focus upon attributional style for negative events reflects the central role it plays in the reformulated hopelessness and diathesis-stress model of depression (Abramson et al., 1989). That theory posits that individuals who attribute negative life events to internal, stable, and global causes (the diathesis) will be more vulnerable to feelings of hopelessness, depression and low self esteem in the face of negative life events (the stress) than will those who make external, unstable and specific attributions And indeed, the accumulated evidence from both individual studies and meta-analytic reviews supports not only the association between maladaptive attributional patterns and depressive symptoms but al s o the hypothesis that maladaptive attributional styles may actually predict future depressive symptoms (Gladstone &

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122 Kaslow, 1995 ; Gladstone, Kaslow, Seeley, & Lewinsohn, 1997; Joiner & Wagner, 1995; Nolen-Hoeksema, Girgus, Seligman, 1986 ; Seligman et al., 1984). In this study, all three attributional style scores (positive, negative, overall) and their associations with other variables were explored; only the composite score was used in multiple regression tests of the hypotheses. Some researchers have questioned the utility of both the composite and the positive events scores, and the appropriateness of using a composite attributional style score given that attributions for positive and negative events may operate as distinct cognitive constructs (Haugen & Lund, 199 8). Several studies suggest that attributions for negative events may be more stable than attributions for positive events (Bums & Seligman 1989; Peterson et al., 1982). Furthermore, Metalsky and Joiner (1992) noted that causal attributions for positive events are not ce ntral to cognitive diathesis-stress theorie s. However, in a meta-analysis of 27 published studies with more than 4,000 participants Joiner and Wagner (1995) concluded that all three attributional style composites are reliably and strongly associated with self reported depression in children and adolescents, and the connection holds across age, gender, and sample type. In addition, evidence indicates that attributional style overall composite scores show the same correlational pattern s and predictive utility as negative event scores. Further1nore, a now substantial bod y of research into outcomes other than depression shows that, in general, an optimistic attributional style is associated with higher self-esteem, and more adaptive psychological social and behavioral functioning (Schwartz, Kaslow Seeley, & Lewinsohn, 2000) Among adolescents in this sample, explanatory or attributional styles were s ignificantly correlated with behavioral functionin g (internalizing problems),

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123 psychological variables (self-rated physical appearai1ce, self-concept, perceptions of stigmatization), and interpersonal functioning (social skills) in the directions expected from previous research That is more optimistic or adaptive attributions were associated with fewer internalizing behavior problems lower amounts of perceived stigma, higher self-concept and self-rated physical appearance, and a greater number of social skills. Correlations between variables and the overall attributional style composite were more robust than with explanatory styles for either positive or negative events. In this sample of adolescents explanatory style appears to be a more unitary construct and the composite score which takes into account all available data and which had the highest reliability, more accurately reflects all its facets. As noted above, much previous attention has focused specifically on the relation between attributional style and depression, primarily self-reported depression. However the research on broader psychosocial adjustment variables is growing, with results paralleling those reported here. Strong correlations between pessimistic attributional style and low self-esteem and social competence, as well as between attributional style and the constellation of personal attributes subsumed under the ''internalizing behavior problems'' rubric (depression, anxiety social withd1awal), l1ave been reported (Frank, Blount & Brown, 1997; Haugen & Lund 1998; Schwartz et al., 2000; Tennen & Hertzberger 1985) The only study in which a pessimistic attributional style was associated with a more adaptive outcome involved adolescents with insulin-dependent diabetes mellitus (Murphy Thompson, & Morris 1997). Those adolescents with an external attributional style for negative events were at greatest risk for poor compliance as indicated by less frequent checking of blood sugar. It may be that different cognitive

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124 processes influence specific behaviors versus general self-perceptions. External attributions for negative events may be adaptive in dealing with hypothetical or general situations but full individual assumption of responsibility for the outcome of negative as well as positive events may be required when tasks are clear and the desired outcome is unambiguous (i e checking blood sugar taking medication studying for a test). Attributional style for negative events was the only explanatory style not significantly related to perceptions of stigmatization. And, neither externalizing behavior problems nor any demographic and condition related variables assessed were significantly related to the three attributional style composites These findings in regard to demographic and condition variables are con s istent with most other research, although one study did find a significant correlation between externalizing behaviors and attributional style (Frank et al., 1997). Schoenherr et al. (1992) examined the relationship between attributional style and psychological symptoms in a mixed group ( diabetes, leukemia sickle-cell syndromes) of chronically ill children aged 7 to 16 years old and found that children's attributions were more highly associated with their level of psychological problems than were their den1ographic characteristics, disease type, or duration of illness Similarly, in a study of college-age youths with asthma, illness duration, treatment status age, gender and SES did not significantly contribute to predictions of psychological adjustment but illness uncertainty and attributional style did (Mullins, Chaney, Pace & Hartman, 1997). In another study of 86 children with cancer aged 7-18, the variables of age, therapy status, and relapse were not predictive of adjustment difficulties. However, depressive attribt1tional style was found to be a fairly robust predictor of adjustment in terms of depressive symptoms, anxiety, and acting-out

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125 behaviors This body of research in aggregate, supports the increased emphasis upon the importance of intrapersonal and cognitive factors to adjustment across a wide range of demographic and illness conditions While tl1e prin1ary interest in this s tudy was the potential mediating role of attributional style and the association between attributional style and various adjustment variables, this sample's mean scores and mean scores from other research samples were also compared. No nationally standardized norm s are available for the CASQ. Rather researchers have traditionally relied upon the reliability data and group no1ms from the original validation sample for comparison (Seligman et al., 1984). As noted previously although the craniofacial group's mean negative event sco re was significantly higher than the original validation sample's scores, there was no significance difference for either the positive event or composite attributional scores Qualitative analysis of the sub dimensions indicated that the difference in mean scores was due to the craniofacial group's endorsement of more internal and global attri butions for negative events. There were no differences on the stability sub-dimension. As the sub-dimensions (intemal extemal, stable-unstable, global-specific) are relatively weak psychometrically, no further statistical anal yses were conducted There also were no statistically significant differences between any of this sample's mean negative event, positive event, and composite attributional style scores and those reported in a study of 86 children and adolescents with cancer (Frank et al., 1997) and a group of 40 adolescents with diabetes (Murphy et al., 1997). However when compared to a large sample (1,661) of high school students in Oregon, significant differences were found. The high school students had lower positive composite, higher

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126 negative composite, and lower overall attributional style scores than did this sample of adolescents with facial differences or the other samples of children and adolescents with chronic illnesses. Differences due to geographic region (the samples of chronically ill children were all from the Southeast) or age may account for the disparity (mean age for the high school sample was 16.6 years compared to 14.6 for adolescents with craniofacial conditions and diabetes and 11 .2 for those with cancer). However, it is also possible that having and coping, with a chronic condition profoundly affects one's attributional style. Having seri ous illness or chronic condition thru st upon one may lead one to make more external attributions for bad events. Furthermore, if one has coped with a serious condition and overcome obstacles that most adolescents never encounter, one may be inclined to take credit for successful outcomes in other areas leading to a more generally optimistic attributional style. Cochrane and Slade (1999) found that perceptions of positive gains as a result of having a cleft lip were associated with well being among a sample of adult s. In general, little is known about the positive consequences of coping with illness or chronic condition and it remain s an area in need of additional study. Although it is possible that age may partially account for differences in mean scores in the studies noted above, no significant age, gen der, or ethnic differences were found in this s ample of adolescents for any of the attributional style scores. These results are congruent with those from most other studies. Despite the well-documented correlation between gender and depression with females reporting higher levels of depression research shows no support for a significant ge nder effect for attributional style composite scores (Gladstone et al. 1997 ; Joiner & Wagner 2000; Schoenherr et al ., 1992) although Gladstone et al did fmd some significant sub-dimensional differences

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127 Although there is a paucity of infor1nation about attributions across racial groups the lack of racial/ethnic effects in this sample i s congruent with results from the few studies that have examined racial differences. In one s tudy that evaluated the properties of a shortened version of the CASQ the CASQ-R C aucasian youth exhibited a more maladaptive attributional style for negative events than did African-American children (Thompson Kaslow, Weiss & Nolen-Hoeksema, 199 8 ) Psychometric properties in that study al s o showed some variation by race with th e overall composite demonstrating better internal consistency and criterion-related validity among Caucasian youths than among African-American youths However it mu s t b e remembered that the psychometric properties of the shortened ver s ion w ere not equivalent to the full version C learly both racial and age / developmental effects on attributional style are areas warran t ing additional study In sum, these results show that the attributional style of adolescents with facial differences and patterns of association with other 1nea s ures of behavioral, psychological and social adjustment are not significantly different from those found among other group s of adolescents. Quite simply, attributional style is not significantly correlated with demographic or condition-related variables in thi s s an1ple Some cautions regarding these results are in order First these finding s rel y almost exclusively upon self-report data and thus the relations among variables may be the result of common method variance. Furthe11nore, one cannot fall into the trap of correlation means causation. It is just as plausible that there is another variable or s et of v ariables that contributes to the observed patterns of dysfunctional cognitive s tyle s and r e lated psycho s ocial problems This may be especially true for these participants who ha v e dealt with their craniofa c ial

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128 condition since birth and whose interactions with others are often characterized by uncertainty and ambivalence. It is possible that the interaction of cognitive style and st ressful events is more complicated among individuals who have always had obvious, potentially stigmatizing conditions (i.e facial diff e rences congenital handicaps or disabilities, racial minorities) than among those who have no such conditions Ex ploration of these issues should contribute to greater theoretical understanding as well as interventions that promote better psychological and social adjustment. Tests of the Hypotheses Although not all the hypotheses of the study were fully supported, the results on the whole underscore the importance of self-perceptions in predicting adolescents' adjustment and the possible role of attributional style in mediating the relationship between experiences of stigmatization and psycho soc ial adjustment Further1nore, evidence suggests that while condition and demographic variables may not be as strongly correlated with adjustment as was assumed in earlier 1nodels of adjustment, important associations between specific variables (e.g., SES and learning disabilities) and psychosocial outcome may exist. Five specific hypotheses were addressed and tested with a series of multiple regression equations. The first two propo sed that that adolescent self-rated appearance would significantly predict psychosocial outcome whereas age, gender, SES and number of functional impai1rnents would not The third hypothesi ze d that adolescent perceptions of stigmatization would predict psychosocial outcome ; the fourth proposed that perceived stigmatization would have predictive utility beyond that contributed by the other independent variables. Finally, this study tested the hypothesis that overall attributional

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129 style mediates the relationship between perceptions of stigmatization and social, cognitive, and behavioral adjustment among adolescents with facial differences Results from testing these hypotheses corroborate the notion that psychological outcome among adolescents with facial differences is related to a complex interaction among multiple domains of risk and protection including condition-related factors, demographic variables, and intrapersonal variables. Self-Rated Appearance and Adjustment One of the most striking conclusions drawn from this study hypothesis is that self rated physical appearance may be the single most powerful predictor of psychosocial adjustment among adolescents with craniofacial anomalies. Quite simply, self-rate .d physical appearance outweighed all other condition and demographic variables in its predictive significance. As hypothesized, higher se lf-rated appearance (facial and general physical) was significantly and positively correlated with self-concept, social skills, and peer network, and negatively correlated with perceptions of stigmatization and both internalizing and externalizing behavior problem These results are consistent with those fron1 an expanding body of research showing that self-perception of appearance, not other-rated attractiveness, is significantly associated with a wide range of emotional and behavioral outcome measures in children, adolescents, and adults with facial differences. For example, in Tobiasen and Hiebert's study (1993), adolescents who rated their appearance as less impaired than the control group rated them had higher social competence levels than those who rated their appearance as worse than the control group rated them. Adolescent sat isfaction with facial appearance was also associated with higher levels of psychosocial functioning among 1 0 and 15 year old subjects with clefts

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130 (Thomas, Turner, Rumsey, Dowell, & Sandy, 1997) and among 11-13 year olds with mixed craniofacial conditions (Pope & Ward, 1997b). In the latter study, negative perceptions of facial appearance were not tied to concen1s in areas such as sports, academics, and appropriate behavior but were associated with social problems, leading the authors to note that dissatisfaction with appearance may have a specific impact on social relations rather than a broad association with psyc hological adjustment. Not surprisingly, the important connection between self-perceptions of appearance and adjustment has been shown to extend beyond facial differences to other aspects of the self. In one study, g lobal se lf-e steem was related to children's feelings about their self-perceived general appearance but not to their weight or to their feelings about their weight (Mendelson, White, & Mendelson, 1995). And in another, neither degree of limb lo ss nor demographic variables were significantly correlated with perceived physical appearance among a group of children with congenital or acquired limb deformities (V arni & Setoguchi, 1991 ) In aggregate, these studies indicate that many adolescents across a wide variety of potentially stigmatizing conditions appear to sustain general feelings about how they look and are capable of attending to the ''gestalt'' of their appearat1ce or presentation. They do not as has been feared, necessarily and inevitably become preoccupied with specific aspects of their appearance such as their facial difference, weight, or limb loss or deformity. In short, beauty may indeed lie'' ... in the eye of the Beheld as much as in the gaze of the Beholder'' (Lefebvre & M11nro, 1986). There is some evidence that other children n1ay a l so focus on their peers' overall presentation and not specific features in making judgments as to level of attractiveness.

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131 When a s ked their per c eptions and attitud es toward peer s with facial port-wine stains observed talking on videotapes children report e d that th e y expected their affected peers to get teased but that the port-wine stain did not affect tl1eir assessment of either the affected child s attractiveness or character (Dem e llw eek, Humphris Hare & Brown 1997) Participants also denied that it would influ e nc e their willingness to become friend s with or interact with them. The coru1ection between self-rated app e arance and adjustment does not mean that significant associations between ' objective ' m e a s ures of appearance and adjustment cannot be demonstrated For example in one recent study the adjustment and learning characteristics of children aged 8-17 with either cleft-palate only (CPO), unilateral cleft lip and palate (ULP) or bilateral cleft lip and palate were compared (Millard & Richman 2001). Significant positive correlations between professionally rated facial appearance and adjustment were found with the latter two group s showing a greater relationship of problems to facial appearance than the CPO c hildr e n and adole s cents In summary, despite assumption s based on stigmati z ation theory and the physical attractiveness stereotype a number of factors likely influence judgments about one's own and other people's appearance and level of attracti v en e ss. Furthermore, objective ph y sical attractiveness is not necessarily related to s elf-perceptions of attractiveness and it is the latter that remains one of the most robust predictors of adjustment in individuals both with and without facial differences (Kenealy e t al ., 1989; Major et al 1984) For example Feingold (1992) in a meta anal y sis of the attractiveness literature concluded that attractiveness ratings by others had only trivial a ss ociations (r < l 0) with measures of mental health among the general population In c ontra s t se lf-rated attractiveness was

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132 moderately associated with general mental health (r = 24) and self-esteem (r = .27). While not denying the critical importance of appropriate and timely corrective surgery for children and adolescents with facial differences, accumulated data make it clear that adolescents' feelings about their overall appearance is critically important, may presage adjustment difficulties, and should be taken into account in comprehensive treatment planning Self-rated appearance and demographic and condition variables Although self-rated appearance was significantly related to all of the outcome variables, it was not significantly associated with any demographic variables (age, gender, SES), diagnostic groups ( cleft lip, craniofacial syndromes, other craniofacial diagnoses) or other condition related variables (number of functional impairments, number of hospitalizations and surgeries) in this sample of adolescents. Pope and Ward (1997b) also did not fmd any significant correlations between a wide variety of condition and demographic variables and self-rated attractiveness in their sample of 24 adolescents. Given their relatively small sample, the authors expressed concern that lack of statistical power may have obscured true differences. However this study contained more than three times the number of adolescents as theirs did suggesting that the lack of significant correlations reflects a genuine phenomenon and is not due simply to sampling error or inadequate sample size. Several other studies have also failed to detect gender (Kapp, 1979; Strauss et al. 1988) and age differences (Broder et al. 1992) in ratings of physical attractiveness. However Thomas et al. (1997) found that 20-year olds with clefts were, on average significantly more satisfied with their facial appearance than were the 10and 15-year old

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133 participants There were no significant differen ces in his sam ple between the latter two groups. In explaining the increased satisfaction among 20-year olds, the authors hypothesized that older participants are likely to have completed their surgical and orthodontic treatn1ent and, whether they experienced significant improvement or not, may simply be more accepting of their appearance. Furthermore the authors noted that younger adolescents may be subjected to increased pressure to conform in many areas, including appearance, leading to more general dissatisfaction with how they look. Of interest is the fact that the 15-year-old participants reported higher levels of dissatisfaction with their appearance than their parents did With their results showing a connection between adjustment and self-rated attractiveness, these authors also suggested that measuring self-satisfaction with appearance may help to identify adolescents at risk for psychosocial problems Overall, only a few studies have examined the r e lationship between demographic and condition variables and self-ratings of facial appearance, and thus little is known about factors that contribute to self-evaluations Given the intense societal pressure on adolescent females to achieve certain standards of beauty and the emphasis on dating and intimate relationships among older adolescents, it would not have been surprising to fmd age and/or gender related differences. The same is true for diagnosis and other condition related variables such as number of surgeries and hospitalizations. The relatively restricted age range in this study may partially explain the lack of statistically significant correlations between age and perception s of appearance. Also, variability within diagnostic categories may have obscured between-group differences, although the obtained standard deviations in ratings of appearance (S D s 10 .2, 7 59, 11.1 for Groups

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134 I II and III, respectively) do not appear significantly different from the normative sample's standard deviation (9 9) In any ev e nt, it appears that some unidentified variable or variables ( e g., cognitive processes family or treatment factors, commonality of experience) are sufficient to outweigh expected differences based on sundry factors such as diagnosis, number of surgeries and hospitali z ations age and gender. The relationship between child and adolescent characteristics and perceived appearance is clearly complicated and merits further inve s tigatio11 Appearance and self-concept The specific hypothesis that perceptions of physical appearance would predict self-concept but that gender age SES and number of functional impainnents would not be significant was fully supported And, con s istent with much previous research, self concept scores among adolescents in this sample w e r e significantly higher than the nonnative sample's scores. Although a few studies have found lowered self-concept among children with facial differences (Broder & Strauss 1989 ; Kapp-Simon, 1986), most particularly with adolescents have shown g lobal selfc oncept among children and adolescents with facial differences to be equal to or greater than that of the normative sample or comparison group (Brantley & Clifford 1979; Kapp 1979; Kapp-Simon et al., 1992 : Leonard et al., 1991). However in contrast to the results from this investigation, several studies have reported nonsignificant age and gender effects in regard to self concept in other adolescents with facial differences For e x ample, older adolescent girls with facial differences have obtained lower sc ores than nonaffected fen1ales on a variety of measures related to self-concept including greater unhappiness anxiety, dissatisfaction

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135 with appearance, and less success in school (Broder et al 1994; Kapp, 1979; Leonard et al., 1991). Although there were no significant gender differences within this group of adolescents, females with craniofacial conditions had statistically higher self-concept scores than did females in the normative sample. Scores for males with facial differences were also higher, but the differences were not statistically significant In contrast to the higher self-concept scores, adolescent females in this study obtained lower selfand parent-reported ratings on social skills and higher externalizing and internalizing behavior problem scores than did males, though the differences were not statistically significant. There are several possible explanations for this pattern of results. First, although the differences may not be statistically significant, adolescent females may simultaneously have a high self-concept and be at greater risk for psychosocial problems in a number of specific areas, than are adolescent males. Second, the high ratings on global self-concept may, as some have suggested, simply represent a defensive reaction to their facial difference (Richman et al. 1985). However, it may also be that be that experience of coping with a facial difference even if one encounters difficulties along the way, promotes an authentic, heightened general self-esteem which does not necessarily translate into better emotional and behavioral adjustment The correlation in this sample between general self-concept and perceived appearance was relatively high (r =. 63), but is comparable to that reported by Harter (1986) in her normative sample. This consistency of correlation between satisfaction with facial appearance and global self-worth regardless of measure or sample group, suggests that the link between feelings of attractivenes s and one's general sense of self

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136 applies equally to all adolescents. As correlation and stat istical prediction do not prove causation, it cannot be assumed that one's self-concept depends on one's self-perceived level of attractiveness It is equally plausible that those with a good overall self-concept view themselves as l1aving an attractive appearance or, that both self-concept and perceived attractiveness are influenced by other variables or cognitive processes. Social and Behavioral Adjustment Contrary to the hypothesis that only self-rated appearance would significantly predict any of the dependent variables age, SES, a11d number of functional impaitments were, in fact, associated with specific outcome variables. Age significantly predicted peer network ; SES predicted social skills, peer network, and externalizing behavior problems in the initial equations but only externalizing behavior in the final equations; and finally, number of functional impairment significantly predicted social skills. In general adolescents in this sample can b e characterized as having good social and behavioral adjustment. Standardized group mean scores on the social and behavioral problem measures were not significantly different from no11native sample means. However there remain a subset of adolescents who, by parent report, demonstrate fewer social skills and more behavioral problem s when compared to their peers without craniofacial conditions. Although only externalizing and internalizing behavior problems and adolescent-rated social skills were u se d as outcome variables in the multiple regression equations, total behavior problem sco re s and parent-rated social skills scores were assessed and the re s ults obtained are discussed in the following section.

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137 Externalizing and internalizing behavior problems Research on psychological adjustment in children and adolescents with craniofacial conditions indicates that rates of occurrence and correlates of behavior problems may vary with age and gender (Richman & Millard, 1997). Externalizing (aggression, impulsivity) and internali z ing (shyness, anxiety, depression) problems have usually been considered separately with attention often focused on the latter due to the demonstrated link between internalizing problems and difficulties in social interaction and peer functioning among adolescents with facial differences (Kapp -Simon et al ., 1992; Richman 1976; Pertschulk & Whitaker 1985). Richman and Millard (1997), in their longitudinal study of children with craniofacial conditions, obtained generally higher than average levels of internalizing behavior when participants were compared to nonaffected peers. The levels remained relatively stable for boys but increased with age for girls Another study (Richman, 1997) found association s between control variables ( e.g ., gender and IQ) cleft-related variables (speech and facial disfigurement) and behavior that varied with age. Among 12-year-old girls, for example, greater facial disfigurement and higher IQ were associated with higher level s of internalizing behavior problems By parent report, 12% of adolescents in this sa mple were rated as having more externali z ing and 12% more internalizing behavior problems than expected i.e., they scored at least 1 S.D. above the standardi z ation sample mean. Based solely on separate ratings of externalizing and internali z ing problems the rate of behavioral problems in this sample of adolescents appears entirely within nor1native levels However when externalizing and internalizing behavior s cores we1e summed and a total behavioral problem score calculated, 22 % of the adolescents sco red one standard deviation or more

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138 abo v e the mean and were classified as having more problems, a larger percentage than anticipated Kapp-Simon and Dawso11 ( as cited in Endriga & Kapp-Simon, 1999) also found a relatively high rate of total behavior problem scores in their sample of 307 children with facial differences between the age s of 4 and 18. Twenty percent of their sample obtained total problem score s in the clinical ran g e compared to 10 % in the nonnative data. And, regardless of gender 56 % o f th e participants who received a score in the clinical range on one scale received a score in the clinical range on the other. In interpreting their results, they noted that it i s common for children with significant emotional or behavioral problems to obtain high scores on both scales rather than on one scale only. This blend of behaviors has been interpreted (Endriga & Kapp-Simon, 1999) as a signal of frustration in achieving desired goals that if left unattained may eventually lead to increasingly aggressive responses and more serious behavioral acting-out. This is in contrast to the depression and helplessness known to accompany primarily internali z ing behavioral problems or the simple aggre ss ion and impulsivity characteristic of externali z ing problems. Extrapolating to this sample it appears that a number of adolescents display a combination of internali z in g and externalizing behaviors that may place them at risk for adjustment difficulties, difficultie s that would be missed by focusing on one type of problem only. Both socioeconomic status (SES) and p e rcei v ed physical appearance significantly predicted externali z ing behavior problems while 011ly physical appearance predicted internali z ing problems. This association between S E S and externalizing problems is consistent with a substantial body of preexisting literature indicating that, among the general population children from lower income ba c kgrounds are at greater risk for

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139 psychological difficulties (Duncan, Brooks-Gunn, & Klebanov, 1994; Dodge, Pettit, & Bates, 1994; Keiley, Bates, Dodge, & Pettit, 2000). A correlation between lower SES and parent's ratings of more externalizing behavioral symptoms has also been shown in children with cancer (Frank et al., 1997). However, Richman (1997) did not find any effect of SES on behavior in her group of 65 children with cleft lip and cleft lip / palate. Thus, although a preponderance of evidence links lower SES to more externalizing problems, it is clearly not significant in all studies. Social Skills and Social Adjustment The internalizing behavior problems often associated with facial disfigurements include many that are social in nature shyness, anxiety, hypersensitivity, self consciousness, social inhibition, and negative self-perception (Bull & Rumsey, 1986; Kapp-Simon et al.,1992; Tobiasen & Hiebert 1993). Kapp-Simon et al. found adjustment in children with facial differences was related to social skills and social behaviors rather than feelings about appearance school perfortnance, or their sense of self-worth. As a result, they suggested that measures of social skills and social behaviors rather than self-concept may be best indicators of overall psychological functioning. Given the importance attached to social adjustment among adolescents with facial differences, two different aspects of social adjustment were included in this study social skills and peer network. Mean standardized scores for adolescent-rated social skills were not significantly different from normative levels. When translated i11to behavioral levels 14.5% of adolescents rated themselves as having Fewer social skills compared to the normative sample, with scores were more than 1 S D. below the normative sample mean. By parent

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140 report, 21 % of adolescents scored in the Fewer social skills category. Discrepancies between self-and other-reported measures are not unusual and, in the absence of direct observation or evaluations from additional respondents it is difficult to ascertain which more accurately reflects the adolescent's social adjustinent. Interestingly, neither parent nor adolescent rating of social skills was significantly correlated with adolescent reported peer network, the other measure of adjustment employed. Problematic peer and social relationships are considered to have long-term and wide reaching academic, personal and career effects for children and adolescents with facial differences and an understanding of those factors that contribute to, or predict, good social adjustment is of considerable interest to researchers in the area. In this study, both physical appearance and the adolescent's number of functional impairments (sum of current speech problems, hearing problems, and learning disability) significantly predicted social skills. Although the number of functional impairments significantly predicted social skills, it was not correlated with any other independent or dependent variables, suggesting that the construct bad an indepe11dent, and unique association with the measure of social skills used in this study. The literature on the association of speech and hearing difficulties with adjustment is mixed, with some showing significant correlations and some not (Henggler Watson & Whelan, 1990; Williamson 1996). In this study, learning disabilities were also considered to represent a functional impainnent and when results were examined the difference in mean social skills and internalizing behavior scores between those with and without learnin g disabilities (LD) was significant. Adolescents with LD rated themselves as having fewer social skills than their peers; parents also rated their adolescents with LD as having fewer skills and more

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141 internalizing problems. Thus, though not part of tl1e initial purpose of the study, the connection between learning di sabilities and social adjustment appears significant and worthy of further examination. Learning Disabilities, Social Adjustment, and Behavior Problems There is considerable research showing a strong association among learning disabilities, social adjustment, and internalizing behavior problems in the general population (Little, 1993). Interest in learnin g disabilities among children with facial differences has increased recently (Broder, Richman & Matheson, 1998) with some researchers advocating the exploration of the effects of subt le neurocognitive deficits upon overall adjustment (Maris, Endriga, Oneil Speltz, 1999). Twenty-eight percent of the adolescents in this study had special learnin g disability placements and a number of others had a history of such placements. This figure is somewhat lower than the 41 % estimated rate for learning disabilities among children with craniofacial conditions recently reported in a large, multi-center study (Broder et al.,1998). However, the rate of learning disabilities reported here is based on pare11t report of placement whereas in the Broder et al. study, independent evaluations utilizing the school systems' for1nulas for diagnosis were conducted. Diagnosis by placement alone has been shown to miss significant numbers of affected children and thus it is likely that the percentage of adolescents in this study with learning disabilities is larger than 28%. In addition, almost 25/4 of the adolescent participants in this study had r epeated at least one grade in school, a rate comparable to the 27% reported by Broder et al Tl1is is consistent with numerous reports of increased rates of academic difficulties and schoo l failure among this group of children and adolescents.

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142 In addition to cognitive deficits, low se lfesteem (Kapp, 1979 ; Richman & Eliason, 1982; Broder et al., 1994) behavioral inhibition in the classroom (Richman, 1978a), lower parent and teacher expectations, and underestimation of the intelligence of children with craniofacial conditions (Richma11, 1978b) have been cited as reasons for these high levels of school failure and academic underachievement. And, although learning disabilities are of concern to craniofacial researchers, traditionally emphasis was placed upon those with cleft palate only, and, as a result, their learning problems and general language disabilities are well documented (Richman & Eliason, 1982 ; Broder et al., 1998) Attention to learning difficulties encountered by other children with facial differences is a relatively recent phenomenon Socioemotional functioning in children with learning disabilities The association and possible interactions between learning disabilities, social skills, adjustment and school achievement have long engaged learning disability researchers and the issues are, of course, strikingly similar to those faced by adolescents with facial differences. As noted by Little (1993), for years a significant focus was the extent of socioemotional dysfunction exhibited by chi ldren with learning disabilities, and research addressed the hypothesis that individuals who have difficulty learning academic skills may have comparable difficulty learning social skil ls. Particular emphasis was placed on those with nonverbal learning disabilities and their difficulty perceiving, processing and enacting nonverbal, unrehearsed aspects of social situations. According to Litt le some evidence suggests that children witl1 nonverbal learning disabilities have more social problems than those with other types of learning disabilities. However, there is substantial evidence of social problems and lack of popularity among peers for those

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143 with any type of learning disability In fact, according to one meta-analysis (Kavale & Nye, 1986) as many as 75% of s tudents with learnin g di sab ilities have interpersonal deficits characterized by peer rejection poor peer acceptance, interactional difficulties with peers, parents and teachers, and low soc ial competence, Several attempts have been made to classify socioe motional functioning among children with LD. Fuerst, Fisk and Rourke (1989) found empirical support for three classifications: a group with no apparent psycho socia l disturbance; a group with internali z ed-type problems, i.e., symptoms suggestive of depression, withdrawal & anxiety; and, finally, a group displaying externalizing-type behaviors such as hostility and aggression impulsivity, restlessness and low fru s tration tolerance In their comprehensive review of problems associated with l eanu ng disabilities Gresham and MacMillan (1997) stated that children with LD display lower social competence than their non-LD peers. Social competence is often conceptualized as a complex association of social skills adaptive behavior and peer relationship variables Within this schema, problems with social skills are defined in terms of acquisition and performance deficits. Further1nore, children may have social skills acquisitio11 or perfonnance deficits with or without interfering problem behaviors defmed as either internalizing or over-controlled (anxiety, depression) behaviors and externalizing or und e r-controlled (aggression, impulsivity) behaviors. For example, Gresham and MacMillan (1997) suggested that the externalizing problems of children with attention-deficit hyperactivity disorder (ADHD) may lead to performance deficits whereas internali z ing problem behaviors (anxiety, shyness, social withdrawal) may interfere with the actual acquisition of social skills in children who have attention-deficit without hyp eractiv it y ( ADD)

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144 Many studies have compar e d group s of l ea rnin g disabled and nonlearning disabled students on a number of s ocial-affective characteristics and, in results strikingly parallel to those obtained when children with facial differences are compared to nonaffected peers, found differences on all mea s ur es e x cept self-concept. Students with learning disabilities are less integrated into school life experience more loneliness and victimization and are rated lower by their teach e rs in s ocial competence. (Sabornie 1994). The cognitive correlates and information proc ess ing styles of learning disabled students have also been explored. When compar e d to nonlearning disabled peers students with LD had the lowest expectation of soci a l success used luck more frequently and personal interaction less frequently as e x planations for social outcomes and overall, showed decreased decoding of social information ( Sobol et al. 1983). As the students with LD were compared to both high and low socially accepted children, the differences in attribution appeared to be a function of the learnin g di s ability and not of social standing. There was also evidence that children with LD had deficient interpretations of nonverbal communication, lowered ability to recogni z e the subtleties of emotional expression, emitted more rejecting and competitive s t a t e ments, and had difficulty modifying their verbal communication to meet li s t e ner needs In addition, nonverbal behaviors that smooth the flow of interaction s uch a s s miling and eye contact, were less apparent in the LD child s social repertoire. Thi s con s tellation of poor social decoding, social perception, perspective taking, social knowled g e and social problem solving skills has been linked to general social-info1mation probl e m s olving deficits and not academic performance {Tur-Kasp & Bryan 1994) The etiolo g y of s ocialinfo11nation problem solving deficits is unclear but they have been attribt1ted to primary language deficits as

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145 well as to the vicious cycle of peer rejection leading to fewer opportunities to acquire social skills and thus, inevitably, poorer social ski ll s. Social interactions in children with facial differences As noted previously, an increasing amount of r esea rch has focused understanding and treating similar deficits in children and adolesce11ts with craniofacial conditions. In a naturalistic study of 13 adolescents with facial differences Kapp-Simon and McGuire (1997) observed social interaction patterns in a sc hool lunchroom. They found significant behavioral differences between children with craniofacial differences and their peers The fonner were more likely to observe than participate in social interactions ; the latter initiated more contacts, received more positive responses, and engaged in longer conversations than did the adolescents with facial differences. Pope and Ward (1997a & 1997b) also found that some participants in their study had a combination of social withdrawal, social anxiety, and self-consciousn ess associated with low social competence. And, of course, low social competence increases the risk of peer rejection because such youngsters tend to be socially awkward and embarrass themselves and others, making peers uncomfortable (Coie, 1990). Furthermore, some parents reported feeling their children were actually disliked by peer s, an indication that their social difficulties were not limited to shyness ru.1d social withd1awal (Pope & Ward, 1997a & 1997b ). The question of whether some adolescent s with facial differences are at particular risk for peer rejection is important becau se rejection itself is a powerful marker for future problems (Parker & Asher, 1987) Thus it is clear that the same problem s with social skills and peer relations plague many children and adolescents with learning disabilities and with craniofacial conditions.

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146 Given the high percentage of the latter with dual diagnoses (learning disability and facial difference), one cannot help but wonder whether social information processing deficits may explain some of the problems in psychosocial adjustment. More thorough investigation of the rate of learning disabilities and th ei r contribution to social, academic and psychological problems in the craniofacial population is clearly required. Peer Network Peer network was significantly, and negatively correlated with both externalizing and total behavior problem scores but not with internali z ing problems Thus, in this sample, externalizing behavior problems apparently interfere more with participation in peer activities than do internalizing problems. The a bs ence of any correlation between internalizing behaviors and peer network is rather surprising given the documented connection between effects of behavioral inhibition on so cial adjustment. Several possible reasons for this exist. First it may be that externa lizing behavior problems result in greater rejection and isolation from social activities in this age bracket than does shyness or anxiety. Internalizing type problems may be felt by an individual, and influence one's level of comfort in interactions, but not l e ad to exclusion from peer activities to the extent that aggressive externalizing b e haviors do. The absence of correlation between internali zi ng problems may also be due to limitations in the measure of social activities and peer relations used in thi s study. The PIR has been found to discriminate differences in the quality and quantity of i nteractions in previous studies of adolescents with chronic illnesses (Pendley, 1996 ; P e nd e ly et al ., 1997) but it is not a widely used measure supported by extensive re se arch. Furthermore, during the course of this study, questions arose regarding the PIR 's ability to provide an accurate description

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147 of these adolescents' peer network due to tremendous variations in criteria for inclusion. Despite careful instructions, some adolescents appeared to name everyone they had had the briefest interaction with while others were c l early 1nore selective in their reporting. Finally, this sample may not be representative of adolescents with craniofacial conditions and different results might be obtained from other participants. Although SES was predictive of peer network in the first hierarchical multiple regression equation, with the addition of functional impairments its unique contribution diminished and, in the final equation, only age and perceived physical appearance were predictive. The fact that age was not significant in predicting any outcome variable except peer network was not particularly surprising g i ven, as noted previously, the relatively restricted age range and the fact that preexisting literature reports no such associations within equivalent age-restricted samples. Yet developmental tasks do shift significantly from early to later adolescence, and the possible existence of age-related associations cannot be ignored. Young teenagers must deal with the physical and emotional changes that accompany the onset of puberty, the shift, generally, to less structured educational settings, initial forays into the world of dating, and more peer initiated social interaction. By the end of high scl1oo l most adolescents have achieved greater independence from parents and family and concerns shift to longterm educational and career planning and the formation and maintenance of intimate relationships. In addition, surgical and orthodontic procedures are frequently completed and additional significant changes in appearance are unlikely. Thus older adolescents must confront, and come to ter1ns with, the facial appearance they will carry with them through adulthood. The positive association between age and peer network in this study

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148 may reflect the greater freedom and fle x ibility to parti c ipate in social activities characteristic of older adolescence Most older teena g er s drive and high schools generally have more organized activities availabl e to th e ir students than do middle schools. It may be that greater maturity and indep e nd e nce contributed to the positive association between age and peer network in this s ampl e As discussed extensively at the beginning of this chapter perceived stigma was significantly correlated with general self-concept s ocial skills, internalizing problems and externalizing problems and in bivariate multipl e r egr e s sion analyses, significantly predicted each of those outcome variable s Perceiv e d s tigma did not, however, significantly predict the adolescent s pe e r network althou g h the association between the two approached significance {ll_ =. 06). However contrary to expectations, it did not make a unique contribution to the prediction of an y d e p e ndent variable except social skills beyond that offered by the other variabl e s that w e r e simultaneously entered into the equation with it (i e., age, gender SES number of fun c tional impairments, and perceived appearance). Self-rated appearance made a significai1t and unique contribution to general self-concept and internalizing behaviors wliil e age co1 1 tributed to the prediction of adolescent peer network. These results should not b e i nterpreted as meaning that perceived stigma is unimportant in the conte x t of the d e p e ndent variables assessed here. Rather, it is clear that perceptions of appearan ce a11d s ti g matization are closely related in this sample and it is difficult to ascertain the separat e c ontribution of the latter in the presence of the former These results also reaffirm th e i n1portance of individual cognitive processes to psychosocial adjustment

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149 The Self-Protective Role of Attributional Style Finally, the results provide preliminary support for the role of attributional style in mediating the impact of stigmatization on particular indices of adjustment. Based on one of Crocker and Major's (1989) proposed self-protective strategies against stigmatization, the third hypothesis proposed that attributional style would mediate the effect of stigmatization on the outcome variables self-concept, s ocial skills, internalizing and externalizing behavior problems, and peer network. As perceived stigma was not significantly associated with peer network, the impact of attributiona l style on it could not be tested. However, as noted previously, evaluation of its impact on the other variables led to the conclusion that attributional sty le mediated the relationship between perceived stigma and both social skills and internalizing behavior problems, partially mediated the relationship with self-concept, and had no role in mediating the relationship between perceived stigma and externalizing behavior problem s In some ways, this pattern of results is somewhat unexpected given that Crocker and Major (1989) focused on global self-esteem not specific aspects of the self-concept, in developing their theory of self-protective strategies Specifically, they sought to explain the discrepancy between the expectation of lowered self-concept among members of stigmatized groups and the reality of general self-concepts that are not significantly different than the general population s self-concept. Clearly, further investigation and understanding of the construct of genera l se lfconcept and the factors that shape it among children and adolescents with facial differences is required as is continued testing of this and related multifactor conceptual frameworks.

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150 Attributional style s role in mediatin g tl 1e r e l a tion s hip b e tween perceived stigma and both social skills and internali z ing beha v ior pr o bl ems underscores the importance of cognitive processes in shaping adaptation to chronic illn e ss or disability. Given the extensively documented connection between attributi o nal style and depression, it is not surprising that attributional style functions a s a prot e cti ve mechanism against internali z ing behavior problems in thi s population. I ~s r o le in enhancing the expression of social skills is less clear However as not e d earlier the relationship between social adjustment and internali z ing problems is well docum e nt e d among children and adolescents with facial differences and it may b e that th e re are important but poorly understood connections among all three con s truct s. Furthetmore, these results a re con s i s tent with r es earch exploring the connection between attributional style and loneliness (Gre s ham & MacMillan, 1997) and shyness and depression (Romney & Brenner 1997). In 011 e stud y ( Crick & Ladd, 1993) the relationships between loneliness and attributi o nal s tyl es of popular rejected, and neglected children were compared. Amon g p o pular c l u ldren loneliness was negatively related to taking credit for the success of their p ee r r e lation s hips whereas the opposite was true for 11eglected children The fact that the relationship between perceiv e d s tigma and externalizing behaviors was not mediated by attributional sty l e h as both theoretical and practical significance From a theoretical standpoint th ese fin d in gs emphasi z e the importance of intraindividual differences in cognitive proce ss in g. P rac tically they suggest the importance of tailoring interventions to the individual a n d the problems. Those adolescents with more internali zi n g than e x t e rnali z i ng b e ha v ior problems may respond

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151 better to more cognitively oriented psychotl1erapy whereas those who display more externalizing problems may benefit from more direct b e havioral interventions The latter are of cotrrse, individuals who often act without thinki11g and the fact that cognitions and attributions do not appear as important to them a s to tho s e with internalizing problems is perfectly logical This entire area is one in n ee d of further clarification and research Lim i tations and Strengths of the Study The contributions of the finding s should b e int e rpreted in view of the limitations of the present study First, the data collected ar e cros s se ctional in nature; longitudinal studies are necessary to provide a more complete picture of the development of attributional style and perceptions of stigmati z ation and appearance, as well as their relation to various indices of adjustment over time. Longitudinal studies would also provide more infortnation as to the directional nature of tl1e relationships between the various constructs, particularly in terms of their cau s al and predictive values. Second, the use of additional, nonfamilial informants or n a turalisti c ob s ervations of adolescents' social interactions and behavioral adjustment wo11ld r e duce the possibility that rater bias may have influenced some of the findings in this s tl1d y. Measurement of each of the constructs was done by self-report or parent-report onl y. If adolescents and parents share a systematic reporting bias, such as a tendency to und e r or over report problems the measures may misrepresent the adjustment of the s e ad o l e scents Naturalistic observation by raters unfamiliar with the adolescents would likel y r e duce such bias and provide more precise infonnation as to the behavioral stren g th s and w ea knesses of participants. Additional problems that may interf e re witl1 th e r e liability and generalizability of the results include the representative nature of the s ample Future studies employing

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152 larger samples of ethnically diverse participants are n ee ded to determine whether or not these findings truly generalize to minority adolesce11ts. Although every effort was made to recruit a truly representative sample of the adolesce11ts being treated at the various centers it may be that those who participated differ in s ignificant and relevant ways from those who declined and such differences would affect the general i zabi lity of these results. In addition, although well-standardized measures were, with one exception, used in this study, the different methods of data collection (in person versus mail) may have had an impact on results. Ideally, all measures should be psycl1ometrically sound and administered in a controlled setting by trained research team members as there is more uncertainty about standardization when measures aie completed off-site. Finally, although attributional style was significantly related to three of the five outcome variables and, as hypothesized, mediated perceived stigma for all but peer network and externalizing beha viors, these results should be interpr e ted wit h caution given the relatively low reliability of the attributional style composite score ( a = .66). Despite the potential limitation s of the study, severa l important strengths should be noted. This sample of adolescents with craniofacial conditions was one of the largest to participate in such a research project and thus the reliability and generalizability of the results are enhanced. The sample size of 83 met the often recommended 15 subjects per independent variable needed to obtain enough power to detect statistica l significance and to control for multiple, independent variables and po ss ible interaction effects. The relatively large number of participants pemlitted stat i st ical analyses of more diagnostically homogeneous sub-groups and thus incr ease d both the impact of the results

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153 and their generalizability in clinical practice Furthermore, the sample was large enough to analy z e possible confounds by SES gender and r ace. Another strength is that this was a multi -s ite st udy the product of collaboration among three of the major craniofacial treatment centers i11 Florida. Thus, participants hailed from diverse programs and geographic area s, substantially reducing the likelihood that these results are due to some idiosyncratic characteristic of a particular treatment team program, or geographic location. Finally, th e proj ec t was theoretically based and designed to empirically test a-priori hypothes es. Conclusion Congruent with the substantial body of literatur e on children with chronic illness, these results indicate that most adolescents with facial differences do not differ substantially from healthy children in terms of di se a se-s pecific personality patterns or the prevalence of clinically significant emotional or adjustment disorders However, like other chronic illnesses having a craniofacial condition appears to function as a stressor that may, in combination with other variables contribute to increased risk for the development of various difficulties particularly certain behavioral and social adjustment problems And as with other groups of children, it i s c l ea r that there is often substantial variability in functioning among adolescents with faci a l differences with some adjusting well and others more poorly or inadequately. To ga in a better understanding of this differential adjustment, this study incorporated elements from both Thompson's transactional stress and coping model and Wal lander and Varni' s risk and resiliency model in order to explore the variables that influenc e th e psychosocial outcome of adolescents with craniofacial conditions. In doin g so, it included constructs from both

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154 stigmati z ation theory and Crocker and Major 's th e o ry r eg arding the role of selfprotective strategies such as attributional s t y l e in m e di at in g the effects of stigmat iz ation within and among particular individual s and g r o up s (see Fi g ure 1). Of course the number of variable s that c an b e ex plored in any given study is rather limited and thus only a few of th e pr o po se d indi v idual family environmental, and condition-related variables were examined. D es pit e thi s info1mation of both theoretical and pra c tical significance was obtained Fir s t a 11d p e rh a p s most importantly this research reaffirms the significance of intraindividual a nd m e diating variables in adjustment The adolescents' subjecti v e e x p e ri e nc es of st i g mati z ation as well as their self-perceived appearance, both intraindi v idu a l v ari a bl es, w ere highly predictive of psychological adjustment. And a s propo se d in th e m o d e l a ttributional style mediated the relationship between perceived s tigma a n d m os t ou t co m e measures the exceptions being peer network and externali z ing beha v ior probl ems. The areas of intraindividual and medi a tin g va ri a bl es are ones that, for the most part, were previously ignored in studies e x amiiu11 g th e adju s tment of individuals with facial differences. Appearance was traditionall y ass um e d t o be an '' objective ' disability parameter or condition-related variable that wa s dir e ctl y related to outcome. A similar, direct relationship was assumed for s ti g mati za tion H owe v e r results from this study make it clear that perceptions of appearance an d st i gma ti z ation and mediational processes such as attributional style may act to pr o t ec t th e se lf-concept and promote healthy adjustment among individuals who ex p e ri enc e s t i gm ati z ation or other condition related s tressors

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155 These results also reaffirtn the importance of particular demographic and disability / condition related variables and tl1e importance of continuing to explore their specific effects. Here, as in other studies, SES was relat ed to certain outcome variables whereas age, gender, and diagnosis were not It may be that SES itself acts, under certain conditions, to mediate the impact of other variables. Furthermore, while the total number of functional impairments was not significantly related to most of the outcome variables, one in particular diagnosis of specific learning di sab ility was highly significant and its role in adjustment, particularly social and peer interaction merits further study. Thus, the model's usefulness in highlighting specific risk and re si liency factors and the possible interactions among them is certainly supported As noted above, many of the variables in the model are likely significantly related to adjustment in this and other groups of chronically ill children and adolescents. When examined systematically within the context of a model such as the one presented here, they help to explain disparities among result s from pr evio u s studies, challenge long-held and often erroneous assumptions, contribute to ai1 und erstan ding of the numerous factors that influence psychosocial outcome, increa.se our ability to identify children at risk for adjustment difficulties, and, hopefully lead to the promotion of greater resiliency in children and their families.

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APPENDIX A SOCIAL PERCEPTION QUESTIONNAIRE (CHILD / ADOLESCENT VERSION)

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Location: Social Perception Questionnaire (Child/Adolescent Version) Num ber: 157 1. Do yo u t hink that yo ur appearance (facial difference) affects whether people want to be friends with you or get to know yo u? Circle one. 0 Never 1 Rarely 2 Sometimes 3 Often 4 5 Very Often All the time 2. Do you think t h at yo ur appearance (facia l difference) affects whether people like yo u or not? Circ l e one. 0 Never 1 Rarely 2 Sometimes 3 Often 4 5 Very Often All the time 3 Do yo u t hink that yo ur appearance (facia l difference) affects whether you are invited to parties or to do things with other people your age? Circ l e one. 0 Never 1 Rarely 2 Sometimes 3 Often 4 5 Very Often All the time 4. Do you t hink t h at your appearance (facial diffe1 ence) affects whether yo u can date a nd h ave c l ose relation s hip s ju st like people without facial differences? Circ l e one. 0 Never 1 Rarely 2 Sometimes 3 Often 4 5 Very Often All the time

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APPENDIXB PEER INTERACTION RECORD (CHILD / ADOLESCENT VERSION)

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159 L ocat i o n: Number: ___ PIR-Child/Adolescent Your Age: ________ D ate: __________ _ In the past week (past 7 da ys), how often did you do the following activities WITH FRIENDS (not family members) ? ,r the sq uare is colored in Y. OU do not need to answer that P.art. If yes, What friends did you do it Yes how many with? Please li st first How old w e r e or times in names. your fri e nd s? no ? the last Li st ages. week? 1. Ate a meal with friends? ( not at sc h oo l ). 2. Watched TV or li stene d to music with friends ? 3. Worked on homework or a school project with friends? ( when not in sc h oo l ) 4. Had a friend over? 5. Went to a frien d 's house ?

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PIRChild 160 If yes Who did you do it with? Yes how many Please list first names of How old were or times in friends in #s 8, 10, & 11 your fri e nd s ? no? the la st List ages. week ? C ir c l e o n e: 6. Went to a c lub B oys Onl y meeting ( e g S c out s YWCA c hurch c lub G irl s Onl y 4H) ? B oys and Girl s C ir c l e o n e : 7 Played team B oys Onl y sports with adult coach after school Girl s Onl y or on weekend (e .g s wim team ba s eball B oys and G irl s g y mna s ti cs so c ce r t e nni s)? 8. Went with a friend to a place like movies, beach, skating? C ir c l e on e: 9. Went to a party B oys Onl y with friends? Girl s Onl y B oys and Girl s 10. Went shopping or to the mall with friends? 11. Played outdoor game or activity with friends? (e.g., softball swimming, s occer)?

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PIR Child 161 If yes, Yes how many Who did you do it with? How old were or times in Please list first names of your friend s? no? the last friends List ages. week? 12. Played indoor game or activity with friends? (e. g ., computer game cards board game crafts) First Name Boy or Girl Age 13. Who are your friends? List FIRST NAME, whether the friend is a boy or girl, and the person's age for each friend. THANKS!

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APPENDIXC DEMOGRAPHIC QUESTIONNAIRE

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163 Location: ----Number: -----DEMOGRAPHIC QUESTIONNAIRE (for Parent or Guardian) Please answer the following questions. If you are not certain of an answer, please try to give the best or most accurate answer you can. Be sure to ask if you have any questions. Thank you. 1 What is your marital status? Circle one: Married Divorc ed Widowed 2. What is the mother 's (or maternal guardian 's) level of education? 3. What i s the mother's (o r mat er nal guardian's) occupatio n? 4. What is the father's (or paternal guardian 's) l eve l of e du catio n ? 5. What i s the fath er's (01 pat er nal guardian's) occupatio n ? 6. What is the child's et h1ric stat u s? CiIcle one: White Other: African-American Hi s pani c ---Asian Other 7. How many children in the family? _____________ ___ 8. What is your child's grade in sc h oo l ? ______________ _ 9. Has your child ever had to repeat a grade in sc h ool? Yes No ------If YES what grade or grades? ________ ____ _____ 10. Has your child ever b ee n placed in any special c la sses at school? ___ Yes No --If YES, plea se describe 11 How many times ha s yo ur child been ho spitalized? ____ ______

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Demographic Questionnaire 1 6 4 --=-----~-=-==-----12 H o w man y tim es ha s y our c hild had s ur ge r y? ______ __ __ _ 1 3 Do y ou think y our child will hav e an y m o r e s ur ge ri es in th e future? __ Y es N o -1 4 H as y our c hild had dental 0 1 1 or t h o d o n tic pr oce dur es? ___ Y es No -1 5. I s y our child r ece iving ANY t r ea tm e n t at th e p rese nt tim e f o r : a. Sp eec h Pr o bl e m s? _ __ Y es ____ No If YES wh a t kind? ___ ____ __ ___ __ b H e aring probl e m s? ( f o r e x a mpl e h ear in g a id m e di c ation for e ar inf ec ti o n s) Y es --No --If YES what kind? 16 Wh a t i s y our c hild 's se x? M a l e F e mal e 1 7. Wh a t i s y oU1 1 c hild 's d a t e o f bir t h ? Mo n t h D ay Ye ar 19 H o w are yo u r e lat e d t o thi s c hild ? Ci r c l e o n e M ot h e r Guardi a n Fat h e r O t h e r ____ _

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APPENDIXD SOCIAL PERCEPTION QUESTIONNAIRE (CHILD / ADOLESCENT VERSION): ITEM RESULTS 1. Do your think that your appearance ( facial difference) affects whether people want to be friends with yo u or get to know you? Response Frequency Percentage Never 16 19 Rarely 23 28 Sometimes 22 27 Often 11 13 Very Often 4 5 All the time 7 7 2 Do you think that your appearance (facia l difference) affects whether people like you or not? Response Never Rarely Sometimes Often Very Often All the time Frequency 21 21 26 3 6 7 Percentage 25 25 31 4 7 7 3. Do you think that your appearance (facial difference) affects whether you are invited to parties or to do things with other people your age? Response Never Rarely Sometimes Often Very Often All the time Frequency 28 18 19 7 7 4 165 Percentage 34 22 23 8 8 5

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166 4 Do you think that your appearance (facial difference) affects whether you can date and have close relationships just like people without facial differences? Response Frequency Percentage Never 25 30 Rarely 19 23 Sometimes 17 21 Often 7 8 Very Often 11 13 All the time 4 5 166

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APPENDIXE SOCIAL PERCEPTION QUESTIONNAIRE (PARENT / GUARDIAN VERSION): ITEM RESULTS 1. Do your think that your child's appearance (facial difference) affects whether people want to be friends with your child or get to know him or her? Response Never Rarely Sometimes Often Very Often All the time Frequency 22 20 27 6 5 3 Percentage 27 24 33 7 6 4 2. Do you think that your child's appearance (facial difference) affects whether people like him/her? Response Never Rarely Sometimes Often Very Often All the time Frequency 29 18 24 5 4 3 Percentage 35 22 29 6 5 4 3. Do you think that your child's appearance (facial difference) affects whether your child is invited to parties or to do things with other dhildren his/her age? Response Never Rarely Sometimes Often Very Often All the time Frequency 36 18 19 3 5 2 167 Percentage 43 22 23 4 6 2

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168 4. Do you think that your appearance (facial difference) affects whether your child can date and have close relationships just like people without facial differences? Response Frequency Percentage Never 29 35 Rarely 18 22 Sometimes 20 24 Often 9 11 Very Often 6 7 All the time 1 1

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BIOGRAPHICAL SKETCH Ann Marie Usitalo was born in Detroit, Michigan and graduated from Cass Technical High School She attended Brown University and after spending several years working and studying pottery in Japan, graduated in June 1980 with an A.B. in History. Her area of concentration was Asian, Russian and Eastern European intellectual history with an emphasis on nineteenth and twentieth century revolutionary movements. After completing postbaccalaureate studies in psychology at Brown and the University of North Florida she entered the clinical and health psychology graduate program at the University of Florida She received her masters degree in clinical psychology in December 199 5 189

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I certify that I have read this study and that in my opinion it conforms to acceptable standards of scholarly presentation and is fully adequate in scope and quality, as a dissertation for the degree of Doctor of Philosophy. Stephen R Boggs Chair Associate Professor of Cliiucal and Health Psychology I certify that I have read this study and that in my opinion it confonns to acceptable standards of scholarly presentation and is fully adequate cope and quality, as a dissertation for the degree of Doctor of Philosop y ........... es R. R d gue sociate Pro essor of Clinical and Health Psychology I certify that I have read this study and that in my opinion it conforms to acceptable standards of scholarly presentation and is fi1lly adequate in scope and quality as a dissertation for the degree of Doctor of Philosophy. ~.i,_es J. Algina r fessor of Educa o I Psychology I certify that I have read this study and that in my opinion it conforms to acceptable standards of scholarly presentation and is fully adequate in scope and qua ty, as a dissertation for the degree of Doctor of Philos...,..,hy. ~.ies A Shepperd As ociate Professor of sychology I certify that I have read this study and that in my opinion it conforms to acceptable s tai1dards of scholarly presentation and is fully adeq~te, in scope and quali as a dissertation for the degree of Doctor of Philosop""' '. ... William N. Williams Professor of Communication Science s and Disorders

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This dissertation was submitted to the Graduate Faculty of the College of Health Professions and to the Graduate School and was accepted as partial fulfillment of the requirements for the degree of Doctor of Philo so hy May 2002 Dean College of Health Professions Dean Graduate School

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