Self-Perceived Physical Appearance in Children and Adolescents with Congenital/Acquired Limb Deficiencies
JAMES W. VARNI AND YOSHIO SETOGUCHI
Clinical observations have described children and adolescents who have suffered an amputation as a result of disease or trauma as manifesting depression, anxiety, and loss of self-esteem.9 Given the large variability in adaptation observed across individual children, recent research studies have begun the empirical process of identifying the potentially modifiable predictors of the psychological and social functioning of children with congenital or acquired limb deficiencies. 6-8,11,12
Children with visible physical handicaps such as limb deficiency may be at higher risk for psychological and social adjustment problems given society's attitudes toward visible physical differences.9 Longstanding widespread cultural values toward cosmetic differences may influence the social behavior of others toward individuals with visible physical handicap.' In the seminal research by Richardson,5 these prejudices toward cosmetic differences were found to emerge early in childhood, and with increasing age resembled parental values. As non-handicapped children grew older, they ranked photographs of children with cosmetic handicaps (left hand missing, facial disfigurement) as less liked than children with functional handicaps (needs leg braces, crutches, or wheelchair).' Children with no physical handicaps were ranked as most liked.' Based on these and more recent findings, it might be expected that pediatric chronic physical disabilities that affect cosmetic appearance will be a factor contributing to children's peer acceptance. Children with cosmetic physical handicaps "must be prepared to handle teasing, questions, and comments from peers, in addition to allaying their own concerns about feeling different and unattractive."'
Consequently, the objective of the present study was to investigate the self-perceived physical appearance in children and adolescents with congenital or acquired limb deficiencies. The following research questions were addressed: (1) What is the average self-perceived physical appearance in children and adolescents with congenital or acquired limb deficiencies; (2) Are the self-perceived physical appearance scores of children and adolescents with limb deficiencies different from the normative scores of non-handicapped children; and (3) Are there age and sex differences in self-perceived physical appearance.
Subjects were selected from the population of families having children with congenital/acquired limb deficiencies who were receiving treatment at the Child Amputee Prosthetics Project at the UCLA Department of Pediatrics. The subjects for the present study were participants in a large ongoing research project (Child and Adolescent Needs Project) designed to assess the psychological and social needs of children and adolescents with limb deficiencies and their families. Candidates for study participation were required to be English speaking, with children between the ages of 8 to 17. Ninety-one patients were identified for the research project by systematic review of the Child Amputee Prosthetics Project's weekly clinic schedules. Eight families chose not to participate because of time constraints, and missing data precluded the inclusion of three additional families. Eighty children and adolescents participated in the study (46 boys and 34 girls), typically as part of their routine annual evaluations. The mean age of the 51 children was 10.3 years (SD = 1.65). The mean age of the 29 adolescents was 14.7 years (SD = 1.99). Sixty-five children had congenital limb loss, and 15 children had acquired limb loss. The mean family socioeconomic status (SES) based on the Hollingshead3 four-factor index was 43.2 (SD = 11.3), indicating on average a middle-class family SES.
Perceived Physical Appearance
The construct of perceived physical appearance was measured by the Self-Perception Profile for Children1 and the Self-Perception Profile for Adolescents.1 The physical appearance domain assesses the degree to which the children are happy with the way they look, are happy with their height and weight, wish their body was different, wish how they look was different, wish something about their face or hair looked different, and think that they are good looking. The items for the adolescent scale assess the degree to which the adolescents are happy with the way they look, wish their body was different, like their physical appearance the way it is, think they are good looking, and wish they looked different. The items are presented in a devised structured alternative format which was designed to decrease children's tendency to give socially desirable responses where "I" statements are presented and the child must respond either "True" or "False." Rather, the structured alternative format first asked the child to decide which kind of child is most like him or her, and then asks whether this is only sort of true or really true of him or her. This type of question format legitimizes either choice and facilitates accurate self-perceptions rather than socially desirable responses. The Cronbach alpha internal consistency reliability of the physical appearance scale is .80 for the children's version and .86 for the adolescent version. For the purposes of the present study, the means and standard deviations of the normative standardization samples were utilized for comparison purposes.
Degree of Limb Loss Scale
As part of the overall Child and Adolescent Needs Project at the UCLA Child Amputee Prosthetics Project, we developed the Degree of Limb Loss Scale (DLLS). Upper body limb loss was scored as follows: Forequarter = 8, shoulder disarticulation = 7, above elbow = 6, elbow disarticulation = 5, below elbow = 4, wrist disarticulation = 3, transcarpal/metacarpal = 2, partial hand = 1. Lower body limb loss was scored as: Hemicorporectomy = 9, hemipelvectomy = 8, hip disarticulation = 7, above knee = 7, knee disarticulation = 5, below knee = 4, ankle disarticulation = 3, transtarsal = 2, partial foot = 1. Complete/partial phocomelia and proximal femoral focal deficiency (PFFD) were scored using the above scale according to the length of the limb. Total limb loss was calculated as the sum of the upper and lower limb loss ratings.
The mothers of the children identified as possible study participants were informed of the study when scheduling a regular clinic appointment. Subsequently, they were mailed a packet containing more information about the study, an informed consent form, and half of the larger study questionnaires to be completed by the mother, her child, the child's father, and when appropriate, the child's teacher. Two days before the scheduled clinic appointment, the mothers were phoned and reminded to bring the questionnaires with them to the appointment. At the time of the scheduled clinic appointment, both the child and mother were met by a research team member and the signed consent form was obtained, as well as verbal assent from the child. Consent from both the parent and the child was required for study participation. They were subsequently given more information about the study as well as the opportunity to ask questions, and then were asked to complete the remaining questionnaires. Total estimated time to complete the questionnaires at home and at the clinic individually by the children and parents was 60 minutes each. The research team member was available at all times to answer any questions regarding the administered instruments. The research protocol was approved by the Institutional Review Board at the University of California, Los Angeles.
The children's and adolescents' age and sex were not significantly correlated with their self-perceived physical appearance. There was a statistical trend (r = - .21, p = .07) for the children's group to have lower self-perceived physical appearance as they grew older towards adolescence. The total degree of limb loss was not significantly correlated with self-perceived physical appearance. However, for adolescents, the greater the degree of upper limb loss, the lower the self-perceived appearance (r = - .37, p less than .05).
Means and Standard Deviations
The children's mean on the 4-point perceived physical appearance scale was 3.15 (SD = .78, range = 1-4). The children's mean was significantly higher than the normative mean for non-disabled children (M = 2.83, SD = .71; z = 3.20, p less than .01). The adolescents' mean (M = 2.49, SD = .84, range = 1-4) indicates a statistical trend toward a lower average score than the normative mean for non-disabled adolescents (M = 2.67, SD = .68, z = -1.31, p = .10). For both children and adolescents, the standard deviations around the mean indicate considerable variation in self- perceived physical appearance among individual children and adolescents with limb deficiencies.
The results of the present study indicate that in this cohort of children and adolescents with limb deficiencies, the children had statistically higher self-perceived physical appearance than the normative standardization average, while the adolescents demonstrated a statistical trend toward lower self-perceived physical appearance than the normative sample. It is important to emphasize that the perceived physical appearance scales assessed general overall self-perceived physical appearance and did not focus on the limb deficiency.
There was considerable variability in self-perceived physical appearance among the children and adolescents as evidenced by the large standard deviations in the data. This variability in self-perceived physical appearance indicates that while some children and adolescents have high self-perceived physical appearance, there is also a group whose self-perceived physical appearance is quite low.
There are a number of potential predictor variables which may explain the observed variability in self-perceived physical appearance. Previously, we demonstrated that a number of psychological and social factors are significantly correlated with self-perceived physical appearance.10 Specifically, higher classmate, parent, and teacher social support were statistically predictive of higher perceived physical appearance. Higher daily stress and marital discord were statistically predictive of lower perceived physical appearance. Higher peer acceptance, scholastic competence, and athletic competence were statistically predictive of higher perceived physical appearance. As a group, classmate, parent, and teacher social support, daily stress, maternal and paternal perceived marital discord, peer acceptance, scholastic and athletic competence accounted for 78 percent of the variance in perceived physical appearance. Higher perceived physical appearance was in turn statistically predictive of lower depressive and anxious symptoms and higher general self-esteem. These findings indicate that there are some potentially modifiable psychosocial predictors of perceived physical appearance, and that perceived physical appearance may influence psychological adaptation. Our current ongoing research project is investigating whether specific types of limb deficiencies and specific prosthetic design characteristics may also affect self-perceived physical appearance in children and adolescents with limb deficiencies. The overall goal of the Child and Adolescents Needs Research Project is to use empirical findings to enhance the quality of life of children and adolescents with congenital or acquired limb deficiencies.
This research was supported by grants from the Shriners Hospitals for Crippled Children Research Fund and the Milo B. Brooks Foundation for Limb Deficient Children.
Child Amputee Prosthetics Project, UCLA Rehabilitation Center, 1000 Veteran Avenue Los Angeles, CA, 90024-1653
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- Varni JW, Setoguchi Y, Rappaport LR, Talbot D: Effects of Stress, Social Support, and Self-Esteem on Depression in Children with Limb Deficiencies. Archives of Physical Medicine and Rehabilitation, in press.