HEALTH PSYCHOLOGY, 1991, 70(4), 252-258 Copyright © 1991, Lawrence Erlbaum Associates, Inc.
Social Support Networks Among Families of Children With Craniofacial Anomalies Brooke A. Benson, Alan M. Gross, Stephen C. Messer, Gloria Kellum, and Lori A. Passmore
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
University of Mississippi Investigated the social support available to families of children born with craniofacial anomalies and the perceived degree of satisfaction derived from these relationships. Thirty-six children (1 month to 5 years old) born with craniofacial deformities (FD) were matched by age and sex to 36 children with no significant physical or behavioral problems. The Social Support Questionnaire-Revised, the Revised Denver Developmental Screening Test, and a semistructured interview were administered. Results indicated that parents of FD children reported less available social support and were significantly less satisfied with their support. Parents of children who had more severe physical impairments and were rated as less attractive reported having less available and less satisfying social support. In particular, the social competence of the child was the most important predictor of parental social support. This result is interesting as the parents of FD children appeared to underreport the presence of behavioral-psychological problems in their children. Key words: facial deformity, social support, craniofacial anomalies, social skills
The addition of a new child to a preexisting family system often creates a significant disruption and necessitates readjustment and reorganization within the family unit (Hittelman, Emde, & Simons, 1985). The birth of a child with a congenital handicap or illness, however, may add additional stresses and demands to family and marital relationships (Benson & Gross, 1989). In addition to meeting unique caregiving demands, parents of handicapped newborns may experience significant emotional turmoil while learning to accept and adapt to their new child (Drotar, Baskiewicz, Irvin, Kennell, & Klaus, 1975; Solnit & Stark, 1961). Recent research has suggested that parental adaption to a congenitally handicapped or sick child may be influenced by variables such as the quality of the marital relationship and the adequacy of the social support network (W. N. Friedrich, 1979). Researchers generally agree that utilization of a functioning social support system can be a powerful mediator in the reduction of stress and can positively influence an individual's psychological well-being and physical health (Dean & Linn, 1977; Mueller, 1980; Pilisuk, 1982). Despite these findings, the literature suggests that families of children with varying handicapping or disabling conditions do not have adequate social support systems (W. N. Friedrich & W. L. Friedrich, 1981). Instead, many of these families are forced to cope with the stresses of caring for a handicapped child without the physical and emotional support that a social network could provide. Despite voluminous research investigating the effect of various handicaps on the social support network of the family, the impact of the birth of a child born with a facial anomaly on the social supports of parents has received little attention in the clinical literature. The lack of research attention directed toward this population is perplexing, because the incidence of cleft lip and/or palate is approximately 1 in every 750 live Requests for reprints should be sent to Alan M. Gross, Department of Psychology, University of Mississippi, University, MS 38677.
births, making craniofacial anomalies the second most common birth defect in the United States (McWilliams, Morris, & Shelton, 1984; Peacock & Starr, 1980). Although many minor facial deformities are surgically correctable, the care of a child with a craniofacial deformity (FD) can put tremendous stress on the family network. FD children often require special caregiving and feeding care, have an increased risk of certain physical ailments (upper respiratory infections, hearing impairments, abnormal dental growth), and may exhibit delayed speech patterns (McWilliams et al., 1984). Additionally, mother-infant bonding and communication patterns may be disturbed (Barden, Ford, Jensen, RogersSalyer, & Salyer, 1989; Field & Vega-Lahr, 1984). For many families, these additional caregiving and financial stresses impose a significant burden on the system and may inadvertently contribute to or influence changes in the social support network of the family. Investigations concerning this issue have yielded mixed results. Benson, Sterling, and Sterling (1990) examined the impact of the birth of an FD child on the family system and social relationships. Parents of FD children reported extremely deficient social support networks. In comparison to parents of normal children, most parents of FD children indicated that they had few if any close friendships and obtained little support from relatives. These findings have also been substantiated by Castellanos and Stewart (1964). In contrast, Barden et al. (1988) found no differences among parents of normal and FD children when assessing the availability of support from intimate relationships, friendships, and community and neighborhood contacts. Spriestersbach (1973) additionally noted no significant differences when examining the extent of familial social life and entertainment and recreational patterns. The conflicting results obtained from these studies may be partially attributable to the failure to measure variables that may have a significant impact on social support. In particular, the severity of the child's impairment (A. E. Kazak & Wilcox, 1984) and the attractiveness of the child (Dion & Berscheid,
253
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
SOCIAL SUPPORT NETWORKS
1974; Langlois & Stephan, 1977) may alter parental satisfaction with social support. Children with more severe impairments may place more caregiving demands on the parents, causing disruption or change in parental support networks. Similarly, children with visible craniofacial impairment are generally perceived as less attractive, less popular with their peers, and having fewer friends (Schneiderman & Harding, 1984; Tobiasen, 1987). Because of these attributions, it is possible that parents of children who are perceived as less attractive may be more likely to experience a deficient social network. The current study explored these issues by examining the social support networks available to families with a facially deformed child and the satisfaction derived from these relationships. Parents of children with a craniofacial anomaly were compared to the parents of matched control children on several variables related to social support. It was predicted that parents of FD children would report fewer social supports and less satisfaction with their available supports than parents of control children. Additionally, it was anticipated that the severity of a child's handicap would be related to the nature of the social support system of the family, with families of more severely handicapped children reporting fewer and less satisfying social supports. A relationship between the rated physical attractiveness of the child and the availability of a satisfying social network was also expected. Finally, the discrepancy between the caregiver perception and the report of the child's medical impairments was investigated. METHOD Subjects
Subjects were 36 FD children and 36 non-FD (NFD) children and their primary caretakers (FD 89% = mothers, 5.5% = fathers, 5.5% = other; NFD 83% = mothers, 11.3% = fathers, 5.7% = other). The primary caretaker of the child was considered to be the individual most responsible for the child's care. FD children were randomly recruited from two hospital clinics specializing in the care and treatment of craniofacial anomalies. NFD children were contacted in a private pediatrician's office and were selected to match an FD child on the dimensions of age and sex (23 boys and 13 girls per group). Subjects were limited to FD and NFD children between 1 month and 5 years of age (M = 2.05 years, SD = 2.04 years). NFD children did not have any significant physical or behavioral problems; FD children, however, were included in the study regardless of diagnosis or level of impairment. Although most of our sample consisted of children with cleft lip and/or cleft palates, the extent of associated medical features varied. Diagnoses of FD children are shown in Table 1. Measures
Interview. A semistructured interview was conducted with each primary caregiver. Relevant information concerning family background and constellation, pertinent demographics, the child's developmental history, and related physical and psychological impairments of the child were explored.
TABLE 1 Summary of Primary Diagnoses and Associated Impairments of FD Children Diagnosis and Associated Impairments Frequency Cleft palate only Neuromotor/developmental delay Psychological-behavioral Auditory Visual Cognitive Cardiac Skeletal Urogenital Pulmonary Renal Cleft lip and palate Auditory Neuromotor/developmental delay Psychological-behavioral Gastrointestinal Muscular Cognitive Cleft lip only Visual Auditory Neuromotor/developmental delay Cardiac Skeletal Metabolic Crouzon syndromea Auditory Neurological Treacher Collins syndromeb Developmental Auditory Psychological-behavioral Visual Pierre Robin syndrome0 Cognitive Neurological/developmental delay Psychological-behavioral Goldenhar syndromed Developmental Auditory Facial hemiparesis Psychological-behavioral Microcephaly Neurological/developmental delay
14 7 7 6 4 3 2 2 2 1 1 10 4 3 2 2 1 1 3 1 1 1 1 1 1 2 1 1 2 1 1 1 1 2 1 1 1 1 1 1 1 1 1 1
Percentage 38.9
27.8
8.3
5.6
5.6
5.6
2.8
2.8 2.8
Note, n = 36 (total frequency does not equal 36 due to multiple diagnoses in some children). Characterized by a short upper lip, a drooping lower lip, shallow eye orbits, hypertelorism, and a beaklike nose. Other eye anomalies and ear defects may be present. b Characterized by slanted eyes; notched eyelids; depressed malar bones; deformities of the external, middle, and inner ear; a large fishlike mouth; and an unusual hairline. c Characterized by a small lower jaw and a large tongue that often occludes respiration. Congenital heart disease, digital anomalies, cleft palate, and eye and ear defects are often associated features. d Characterized by marked facial asymmetry, malformations of the ear, and skin growths on the eye. Clefts and cardiac, renal, skeletal, dental, and hearing abnormalities are often present.
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
254
BENSON, GROSS, MESSER, KELLUM, PASSMORE
The Social Support Questionnaire-Revised (SSQ-R). The 12-item SSQ-R is designed to reliably tap separate aspects of the concept of social support by assessing social supports in the time of a crisis, support networks that the individual views as unconditional, and support networks available on a daily basis (Sarason, Levine, Basham, & Sarason, 1983; Sarason, Sarason, Shearin, & Pierce, 1987). The SSQ-R consists of a series of questions concerning the present social support network of the individual; subjects are asked to name individuals in their environment who provide help or support. Additionally, subjects are asked to express, on a 6-point Likert scale ranging from very dissatisfied (1) to very satisfied (6), their degree of satisfaction with that particular support. Two sets of summary scores are obtained from these questions: the total number of perceived supportive individuals (N) and the satisfaction score (S). The overall N and S scores are obtained by dividing the sum of N and S scores for all items by 12, the number of items. Higher S scores indicate increased satisfaction with one's social support network. The Revised Denver Developmental Screening Test (RDDST). To obtain an accurate and sensitive measure of the severity or gravity of the child's impairments, we administered the RDDST. Considered to be one of the most extensively taught and validated developmental screening tests used in the world, the RDDST is designed to delineate specific developmental delays of children between 1 month and 6 years of age (Frankenburg, Dodds, Fandal, E. Kazak, & Cohrs, 1975). The RDDST is divided into four major segments of development behavior: gross motor, language, fine motor adaptive, and personal-social. Standardized on normal children, developmental tasks at each age level are considered to be reasonable indications of the abilities of the child. Failure at any level reflects developmental delay or significant difficulty in that particular behavioral domain. Impairment ratings. As one means of assessing the severity of the FD child's handicap, impairment ratings were calculated. Specific impairments including visual, auditory, neurological, cardiac, cognitive, behavioral or emotional, feeding, dental, and speech problems were assessed. Two sets of impairment ratings were devised: the caregiver report and the charted report of the child's impairments. Caregiver reports were determined by asking the respondent several standardized questions designed to determine whether an impairment was present in each domain listed. Similarly, the child's medical chart was examined at the Craniofacial Clinics for evidence of impairment. Specific medical criteria were utilized to assess the presence of an impairment (e.g., documented history of seizure activity, decibels of hearing loss, visual acuity). Both sets of impairment ratings for the FD children were determined by counting the number of domains in which the impairments were noted to occur. Scores on this measure could range from 0 to 8 domains of impairment (charted M = 3.78, SD = 2.22). Attractiveness ratings. The attractiveness of each child was additionally assessed and evaluated. Using the attractiveness rating procedure utilized by Hildebrandt and Fitzgerald (1979), 12 independent raters evaluated slides of each child on
a 5-point scale ranging from very cute (5) to not very cute (1). Each rater was trained by the experimenter and achieved adequate reliability (r = .85). Final ratings were based on the average attractiveness score for each child. Procedure Subjects in the FD group between the ages of 1 month and 5 years were randomly approached in the waiting room of the Craniofacial Clinics and were given a brief description of the purpose and procedures of the study. To eliminate selection bias, subjects were collected on eight separate occasions over a 2-year period. Thirty-nine individuals were invited to participate in the study; all but 3 responded favorably (their caregivers declined participation due to a lack of interest in the study). Upon caregiver acceptance to participate, the experimenter interviewed the primary caregiver and obtained relevant background and demographic information. The RDDST was then administered to the child and the caregiver by the experimenter. Immediately after, each caregiver completed the SSQ-R while the targeted child was photographed. Facial photographs were taken against a neutral color backdrop to prevent variation among pictures. Subjects in the NFD group were approached in the waiting room of a local pediatrician's office. Individuals were chosen, however, to match a specific subject in the FD group on the dimensions of age and sex. Data were collected on a daily basis over 6 months. The same experimental procedure was utilized.
RESULTS An initial set of analyses were conducted to assess the comparability of the FD and NFD groups on the demographic variables. No significant differences were observed between the FD and NFD groups on parents' marital status, parental age, birth order of the target child, parental race, and respondent to the study (mother, father, grandparent, foster parent). A comparison of parental socioeconomic status (SES) as measured by the Hollingshead (1980) Four-Factor Index of Social Position, however, indicated a significant difference, with parents of NFD children having a higher standard of living (FD M = 30.00, SD = 11.07; NFD M = 45.77, SD = 11.96). According to Hollingshead's groupings, socioeconomic scores of individuals ranging from 30 to 39 generally represent skilled craftsmen and clerical or sales workers. Similarly, individuals who score from 40 to 54 are often employed in a technical trade or are classified as a minor professional. In analyses utilizing the RDDST, developmental quotients as utilized by Frankenburg, Camp, Van Natta, Demersseman, and Voorhees (1971) and German, Williams, Herzfeld, and Marshall (1982) were determined. Developmental quotients were obtained by dividing scores on each section of the RDDST by the child's chronological age and multiplying by 100. This quotient allowed us to compare each child's developmental performance with his or her chronological age and yielded a more sensitive measure of impairment or disability.
255
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
SOCIAL SUPPORT NETWORKS
A one-way multivariate analysis of variance (MANOVA) was computed on the set of dependent variables (domains of the RDDST, attractiveness, SSQ-R N, and SSQ-R S) to assess for group (FD vs. NFD) differences. The MANOVA was selected as a method to protect against inflated Type I errorrates resulting from multiple t tests and correlated variables. The MANOVA was significant using the Pillais criterion, F(7, 64) = 15.64, p < .001. An inspection of the univariate results revealed significant differences in each of the variables, with the FD group experiencing less available social support, F(l, 70) = 4.52, p = .04, and less satisfaction with their social network, F(l, 70) = 70.83, p < .001. A comparison of the four categories of the RDDST (gross motor, fine motor, language, and personal-social) indicated that FD children were significantly delayed in gross motor, F(l, 70) = 18.05, p < .001, fine motor, F(l, 70) = 28.13,/? < .001, language, F(l, 70) = 33.88, p < .001, and personal-social, F(l, 70) = 20.16,/? < .001, skills. Additionally, an analysis of the attractiveness ratings indicated that FD children were perceived as less attractive than their control peers, F(l, 70) = 33.21, p < .001. Means and standard deviations for these findings are presented in Table 2. In an attempt to predict parental social support and perceived satisfaction with social support networks, we computed two multiple-regression analyses with SSQ-R N and SSQ-R S as criterion variables. The four domains of the RDDST, group membership (FD or NFD), and attractiveness ratings were used as predictor variables. These variables as a set were not significantly associated with SSQ-R N, F(6, 65) = 1.94, p = .09, but were significantly associated with SSQ-R S, F(6, 65) = 17.55, p < .001, multiple/?2 = .62. The predictor variables of group membership and the personal-social domain on the RDDST were the only variables providing independent contribution to the prediction of SSQ-R S (see Table 3). FD group membership (/3 = .54, p < .001) and personal-social impairment ((3 = .52, p = .005) were associated with less social support satisfaction. The relationships between group membership and social impairment remained significant even after controlling for SES through a hierarchical multiple-regression analysis in which SES was entered as the first step. Moreover, the relationship between personal-social impairment and SSQ-R S was the sole predictor in a regression analysis in the FD group only. TABLE 2 SSQ-R, RDDST, and Attractiveness Ratings by Group NFD
FD Variable SSQ-R N* S** RDDST Gross motor** Fine motor** Language** Personal-social** Attractiveness** Note. N =12. *p < .01. **p < .001.
M
SD
M
SD
1.86 3.69
1.74 1.43
2.63 5.80
1.33 0.46
76.36 76.30 73.53 78.46 2.13
30.53 26.79 26.48 26.94 0.96
98.55 100.01 99.36 98.85 3.22
7.04 1.26 2.64 4.01 0.59
Similarly, age interactions were tested to assess whether the effects of group status (FD or NFD), developmental functioning (RDDST), and attractiveness on SSQ-R S varied as a function of the child's age. Multiplicative interaction terms were formed and entered in a stepwise regression for the total sample and separately for the two groups. No terms were found to be statistically significant. Point-biserial correlations were computed separately for each charted (present or absent) impairment and SSQ-R S. Also, the relationship between total number of impairments (i.e., the sum of the charted impairments) and SSQ-R S was tested through a Pearson product-moment correlation. No significant point-biserial or Pearson correlations were observed, suggesting no simple relationship between the child's impairments and parental social support. The caregiver report and the charted report of impairments were additionally examined. McNemar comparison tests were run examining the caretaker report and the medically documented report of visual, auditory, neurological, cardiac, dental, cognitive, psychological-behavioral, developmental, and speech-language impairments. No significant differences were found between the caretaker report and the documented report of delay in any of the impairment domains, except in the psychological-behavioral and hearing categories. Parents of FD children significantly underreported the presence of psychological or behavioral problems (p = .006, n = 36) and hearing impairment (p = .002, n = 36) in their children.
DISCUSSION The results from this investigation indicate that parents of FD children have deficient social support networks and are significantly less satisfied with their available support than are the parents of matched controls. This finding is consistent with the literature examining families of children with other handicapping conditions (A. E. Kazak & Clark, 1986). The lack of social support that these parents appear to experience may be a result of several possibilities. Friends and family members may feel uncomfortable around an FD child and may have difficulty accepting and responding to a handicapped child. Many friends or relatives may experience discomfort when trying to relate to the new parents of an FD child and may prefer to reduce or avoid social contact. As suggested by other studies examining handicapped children, it is possible that parents may overprotect their FD child, alienating themselves from an existing social support network (Richman & Harper, 1978). Parental embarrassment or an inability to accept their FD child may additionally place strain on social outlets. The added strain and pressure of having an FD child may also contribute to differences in social supports. Financial obligations may prevent parents from participating in the life style they had previously enjoyed, thus reducing social contacts and forcing the parents of an FD child to become isolated. As expected, the severity of the FD child's impairments strongly influenced parental satisfaction with social support. When compared to age- and sex-matched controls, FD children (regardless of diagnosis) had significantly lower scores on
256
BENSON, GROSS, MESSER, KELLUM, PASSMORE
TABLE 3 Multiple-Regression Correlations of SSQ-R S on Group Membership, RDDST Domains, and Attractiveness
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Variable
SSQ-R S
Group membership RDDST Gross motor Fine motor Language Personal-social Attractiveness M SD Note.
Group Membership
RDDST Gross Motor
Fine Motor
Language
Personal-Social
Attractiveness
.70 .49 .57 .55 .61 .54 4.75 1.49
.45 .53 .57 .47 .56 .500 .504
.73 .69 .76 .46 87.45 24.67
.88 .88 .47 88.15 22.29
.81 .41 86.45 22.76
.48 88.66 21.70
P 0.54
.0001
-.06 -.09 -.09 0.52 0.09
.65 .65 .59 .005 .34
2.67 0.77
R2 = .62, adjusted R2 = .58, R = .79.
all domains of the RDDST. Although the standard deviations for each section of the RDDST were large, suggesting a wide continuum of impairments, these results support previous research and indicate the importance of developmental delay in parental satisfaction with social support (Fox, Lynch, & Brookshire, 1978). When compared to FD children without further medical involvement, parents of children with impairments in multiple domains are faced with additional financial and caregiving demands for an indefinite period of time. Consequently, these parents may deplete their resources of time and energy and may place a decreased emphasis on social activities and contacts. Past research investigating the social competence of FD children has repeatedly indicated a marked deficit in these skills (Fox et al., 1978; Goodstein, 1961; McWilliams & Matthews, 1979). It is not surprising, therefore, that our results corroborate these findings and suggest that the child's level of social competence is the best predictor of parental satisfaction with social support. FD children who have deficient social skills and who are unable to interact in an age-appropriate fashion may be perceived by adults as intrusive, demanding, and difficult. An inability to master developmental tasks such as playing interactive games and the ability to separate from one's mother may result in a child who needs more parental attention and care. Consequently, members of the family's social network may withdraw rather than tolerate the child's behavior. This difficulty is compounded by our finding that caretakers of FD children often underreport psychological or behavioral problems in their children. Although not an uncommon occurrence among parents of FD children, parental denial or nonrecognition of their child's behavioral difficulties may inadvertently affect social supports (Benson et al., 1990; Richman, 1978; Schneiderman & Auer, 1984). Parents who do not place boundaries and limitations on their child's behavior or who refuse to discipline their children may alienate members of their social network. Consequently, parents may experience diminishing social contacts and decreased satisfaction with their available supports. In addition to social competence, the attractiveness of the FD child may also play a role in social support. Although this variable has been demonstrated to be of considerable importance in interpersonal contacts, its relationship to social
support is unclear. Consistent with other literature, our results indicate that FD children (regardless of diagnosis) are rated as less attractive than matched controls (Tobiasen, 1987). Despite this finding, this variable did not appear to add much predictive power when examining parents' satisfaction with social support. Based on the vast body of literature supporting the impact of attractiveness on the attributions and opinions of others, it seems reasonable to expect a relationship between these variables to emerge (Dion, Berscheid, & Walster, 1972). In particular, the visibility of the child's impairment might influence interactional patterns. Parents of children with uncorrected or highly visible clefts may be responded to differently than parents of children with an invisible cleft palate. From this perspective, it is possible that our measure of attractiveness was not sensitive enough to capture the nuances of this relationship. Future research should attempt to delineate and discover the interaction of these factors. In the present study, a significant difference between the FD and NFD groups on SES was observed. It might be expected that families with more economic resources may perceive their available support more favorably. These parents may be better able to afford luxuries (babysitters, an evening out with friends), which may enhance and reinforce their social ties. Despite this reasoning, however, a regression analysis indicated that parental SES did not predict or influence social support satisfaction. It might also be argued that the collapsing of several craniofacial anomalies may confound the experiences of many parents. Although the majority of the sample consisted of children with cleft lip and/or cleft palate, the associated features of these conditions varied in their level of impairment. Despite the notion that the diagnosis or the number of the child's impairments may influence parental social supports, statistical analyses were unable to find any significant differences. Consequently, it appears that one of the important variables influencing parental social support is the severity of the child's developmental delay, not the child's diagnosis or the number of domains of impairment. This investigation is only a first step in understanding the importance of a social support network in the lives of parents of FD children. Many directions are apparent for future researchers to pursue and explore. In particular, the role of
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
SOCIAL SUPPORT NETWORKS other pertinent variables should be examined. Variables such as the quality and strength of the marital relationship, sibling support, parental residence (rural vs. urban), and caregiver depression may be significant predictors of one's social support network and satisfaction. Additionally, the perspective of other family members may provide an interesting contrast to that of the primary caregiver and eliminates the tendency to rely on one source for data. It is possible that the individual most responsible for the care of the FD child may have a different perception of the available social support network than the other family members in the same household. Finally, exploration of appropriate interventions to be implemented by health care professionals is warranted.
ACKNOWLEDGMENTS This research was supported by National Institutes of Health Grant DE08641. We thank the North Mississippi Cleft Palate Team and the University of Tennessee Health Science Center-Memphis Craniofacial Anomalies Clinic for their participation in this project. We also thank Joe T. Harris, MD, D. Winn Walcott, MD, Mark T. Dean, MD, and Rob Benson for their support of this research study.
REFERENCES Barden, R. C , Ford, M. E., Jensen, A. G., Rogers-Salyer, M., & Salyer, K. (1989). Effects of cranio-facial deformity in infancy on the quality of mother-infant interactions. Child Development, 60, 819-824. Benson, B. A., & Gross, A. M. (1989). The effect of a congenitally handicapped child upon the marital dyad: A review of the literature. Clinical Psychology Review, 9, 747-758. Benson, B. A., Sterling, R. S., & Sterling, J. (1990). The effect of a facially deformed child upon the marital dyad. Manuscript submitted for publication. Castellanos, M. C , & Stewart, M. (1964). Psychosocial implications in plastic surgery. In J. M. Converse (Ed.), Reconstructive plastic surgery (pp. 384-393). Philadelphia: Saunders. Dean, A., & Linn, N. (1977). The stress buffering role of social support. Journal of Nervous Mental Disease, 165, 403-417. Dion, K. K., & Berscheid, E. (1974). Physical attractiveness and peer perception among children. Sociometry, 37, 1-12. Dion, K. K., Berscheid, E., & Walster, E. (1972). What is beautiful is good. Journal of Personality and Social Psychology, 24, 285-290. Drotar, D., Baskiewicz, A., Irvin, N., Kennell, J., & Klaus, M. (1975). The adaptation of parents to the birth of an infant with a congenital malformation: A hypothetical model. Pediatrics, 56, 710-717. Field, T. M., & Vega-Lahr, N. (1984). Early interactions between infants with craniofacial anomalies and their mothers. Infant Behavior Development, 7, 527-530. Fox, D., Lynch, D., & Brookshire, B. (1978). Selected developmental factors of cleft palate children between two and thirty-three months of age. Cleft Palate Journal, 15, 239-245. Frankenburg, W. K., Camp, B. W., Van Natta, P. A., Demersseman, J. A., & Voorhees, S. F. (1971). Reliability and stability of the
257
Denver Developmental Screening Test. Child Development, 42, 1315-1325. Frankenburg, W. K., Dodds, J. A., Fandal, A., Kazak, E., & Cohrs, M. (1975). Manual for the Revised Denver Developmental Screening Test (rev. ed.). Denver: University of Colorado Press. Friedrich, W. N. (1979). Predictors of the coping behavior of mothers of handicapped children. Journal of Consulting and Clinical Psychology, 47, 1140-1141. Friedrich, W. N., & Friedrich, W. L. (1981). Psychosocial assets of parents of handicapped and nonhandicapped children. American Journal of Mental Deficiency, ;85, 551-553. German, M. L., Williams, E., Herzfeld, J., & Marshall, R. M. (1982). Utility of the Revised Denver Developmental Screening Test and the Developmental Profile II in identifying preschool children with cognitive, language, and motor problems. Education and Training of the Mentally Retarded, 17, 319-324. Goodstein, L. D. (1961). Intellectual impairment in children with cleft palates. Journal of Speech and Hearing Research, 4, 287-294. Hildebrandt, K. A., & Fitzgerald, H. E. (1979). Facial feature determinants of perceived infant attractiveness. Infant Behavior and Development, 2, 329-339. Hittleman, J., Emde, R. N., & Simons, R. C. (1985). Birth, postpartum, and the parent-infant interaction. In R. C. Simons (Ed.), Understanding human behavior in health and illness, (pp. 137-150). Baltimore: Williams & Wilkins. Hollingshead, A. B. (1980). Four Factor Index of Social Position (Mimeograph). Kazak, A. E., & Clark, M. W. (1986). Stress in families of children with myelomeningocele. Developmental Medicine and Child Neurology, 28, 220-228. Kazak, A. E., & Wilcox B. L. (1984). The structure and function of social support networks in families with handicapped children. American Journal of Community Psychology, 12, 645-661. Langlois, J. H., & Stephan, C. (1977). The effects of physical attractiveness and ethnicity on children's behavioral attributions and peer preferences. Child Development, 48, 1694-1698. McWilliams, B. J., & Matthews, H. P. (1979). A comparison of intelligence and social maturity in children with unilateral complete clefts and those with isolated cleft palates. Cleft Palate Journal, 16, 363-372. McWilliams, B. J. Morris, H. L., & Shelton, R. L. (1984). Cleft palate speech. Philadelphia: Decker. Mueller, D. (1980). Social networks: A promising direction for research on the relationship of the social environment to psychiatric disorder. Social Science Medicine, 40, 147-161. Peacock, J. L., & Starr, P. (1980). An outreach program for families of infants with a cleft lip and/or palate. Children Today, 9, 23-26. Pilisuk, M. (1982). Delivery of social support: The social innoculation. American Journal of Orthopsychiatry, 52, 20-31. Richman, L. C. (1978). Parents and teachers: Differing views of behavior of cleft palate children. Cleft Palate Journal, 15, 360-364. Richman, L. C , & Harper, D. (1978). Observable stigmata and perceived maternal behavior. Cleft Palate Journal, 15, 215-219. Sarason, I. G., Levine, H. M., Basham, R. B., & Sarason, B. R. (1983). Assessing social support: The Social Support Questionnaire. Journal of Personality and Social Psychology, 44, 127-139. Sarason, I. G., Sarason, B. R., Shearin, E. N., & Pierce, G. R. (1987). A brief measure of social support: Practical and theoretical implications. Journal of Social and Personal Relationships, 4, 497-510. Schneiderman, C. R., & Auer, K. E. (1984). The behavior of the child with cleft lip and palate as perceived by parents and teachers. Cleft Palate Journal, 21, 224-228. Schneiderman, C. R., & Hardin, J. B. (1984). Social ratings of
258
BENSON, GROSS, MESSER, KELLUM, PASSMORE
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
children with cleft lip by social peers. Cleft Palate Journal, 21, 219-223. Solnit, A. J., & Stark, M. H. (1961). Mourning and the birth of a defective child. Psychoanalytic Study of the Child, 16, 523-537.
Spriestersbach, D. C. (1973). Psychosocial aspects of the cleft palate problem (Vol. 1). Iowa City: University of Iowa Press. Tobiasen, J. M. (1987). Social judgements of facial deformity. Cleft Palate Journal, 24, 323-327.
Social Support Networks Among Families of Children With Craniofacial Anomalies Brooke A. Benson, Alan M. Gross, Stephen C. Messer, Gloria Kellum, and Lori A. Passmore
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
University of Mississippi Investigated the social support available to families of children born with craniofacial anomalies and the perceived degree of satisfaction derived from these relationships. Thirty-six children (1 month to 5 years old) born with craniofacial deformities (FD) were matched by age and sex to 36 children with no significant physical or behavioral problems. The Social Support Questionnaire-Revised, the Revised Denver Developmental Screening Test, and a semistructured interview were administered. Results indicated that parents of FD children reported less available social support and were significantly less satisfied with their support. Parents of children who had more severe physical impairments and were rated as less attractive reported having less available and less satisfying social support. In particular, the social competence of the child was the most important predictor of parental social support. This result is interesting as the parents of FD children appeared to underreport the presence of behavioral-psychological problems in their children. Key words: facial deformity, social support, craniofacial anomalies, social skills
The addition of a new child to a preexisting family system often creates a significant disruption and necessitates readjustment and reorganization within the family unit (Hittelman, Emde, & Simons, 1985). The birth of a child with a congenital handicap or illness, however, may add additional stresses and demands to family and marital relationships (Benson & Gross, 1989). In addition to meeting unique caregiving demands, parents of handicapped newborns may experience significant emotional turmoil while learning to accept and adapt to their new child (Drotar, Baskiewicz, Irvin, Kennell, & Klaus, 1975; Solnit & Stark, 1961). Recent research has suggested that parental adaption to a congenitally handicapped or sick child may be influenced by variables such as the quality of the marital relationship and the adequacy of the social support network (W. N. Friedrich, 1979). Researchers generally agree that utilization of a functioning social support system can be a powerful mediator in the reduction of stress and can positively influence an individual's psychological well-being and physical health (Dean & Linn, 1977; Mueller, 1980; Pilisuk, 1982). Despite these findings, the literature suggests that families of children with varying handicapping or disabling conditions do not have adequate social support systems (W. N. Friedrich & W. L. Friedrich, 1981). Instead, many of these families are forced to cope with the stresses of caring for a handicapped child without the physical and emotional support that a social network could provide. Despite voluminous research investigating the effect of various handicaps on the social support network of the family, the impact of the birth of a child born with a facial anomaly on the social supports of parents has received little attention in the clinical literature. The lack of research attention directed toward this population is perplexing, because the incidence of cleft lip and/or palate is approximately 1 in every 750 live Requests for reprints should be sent to Alan M. Gross, Department of Psychology, University of Mississippi, University, MS 38677.
births, making craniofacial anomalies the second most common birth defect in the United States (McWilliams, Morris, & Shelton, 1984; Peacock & Starr, 1980). Although many minor facial deformities are surgically correctable, the care of a child with a craniofacial deformity (FD) can put tremendous stress on the family network. FD children often require special caregiving and feeding care, have an increased risk of certain physical ailments (upper respiratory infections, hearing impairments, abnormal dental growth), and may exhibit delayed speech patterns (McWilliams et al., 1984). Additionally, mother-infant bonding and communication patterns may be disturbed (Barden, Ford, Jensen, RogersSalyer, & Salyer, 1989; Field & Vega-Lahr, 1984). For many families, these additional caregiving and financial stresses impose a significant burden on the system and may inadvertently contribute to or influence changes in the social support network of the family. Investigations concerning this issue have yielded mixed results. Benson, Sterling, and Sterling (1990) examined the impact of the birth of an FD child on the family system and social relationships. Parents of FD children reported extremely deficient social support networks. In comparison to parents of normal children, most parents of FD children indicated that they had few if any close friendships and obtained little support from relatives. These findings have also been substantiated by Castellanos and Stewart (1964). In contrast, Barden et al. (1988) found no differences among parents of normal and FD children when assessing the availability of support from intimate relationships, friendships, and community and neighborhood contacts. Spriestersbach (1973) additionally noted no significant differences when examining the extent of familial social life and entertainment and recreational patterns. The conflicting results obtained from these studies may be partially attributable to the failure to measure variables that may have a significant impact on social support. In particular, the severity of the child's impairment (A. E. Kazak & Wilcox, 1984) and the attractiveness of the child (Dion & Berscheid,
253
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
SOCIAL SUPPORT NETWORKS
1974; Langlois & Stephan, 1977) may alter parental satisfaction with social support. Children with more severe impairments may place more caregiving demands on the parents, causing disruption or change in parental support networks. Similarly, children with visible craniofacial impairment are generally perceived as less attractive, less popular with their peers, and having fewer friends (Schneiderman & Harding, 1984; Tobiasen, 1987). Because of these attributions, it is possible that parents of children who are perceived as less attractive may be more likely to experience a deficient social network. The current study explored these issues by examining the social support networks available to families with a facially deformed child and the satisfaction derived from these relationships. Parents of children with a craniofacial anomaly were compared to the parents of matched control children on several variables related to social support. It was predicted that parents of FD children would report fewer social supports and less satisfaction with their available supports than parents of control children. Additionally, it was anticipated that the severity of a child's handicap would be related to the nature of the social support system of the family, with families of more severely handicapped children reporting fewer and less satisfying social supports. A relationship between the rated physical attractiveness of the child and the availability of a satisfying social network was also expected. Finally, the discrepancy between the caregiver perception and the report of the child's medical impairments was investigated. METHOD Subjects
Subjects were 36 FD children and 36 non-FD (NFD) children and their primary caretakers (FD 89% = mothers, 5.5% = fathers, 5.5% = other; NFD 83% = mothers, 11.3% = fathers, 5.7% = other). The primary caretaker of the child was considered to be the individual most responsible for the child's care. FD children were randomly recruited from two hospital clinics specializing in the care and treatment of craniofacial anomalies. NFD children were contacted in a private pediatrician's office and were selected to match an FD child on the dimensions of age and sex (23 boys and 13 girls per group). Subjects were limited to FD and NFD children between 1 month and 5 years of age (M = 2.05 years, SD = 2.04 years). NFD children did not have any significant physical or behavioral problems; FD children, however, were included in the study regardless of diagnosis or level of impairment. Although most of our sample consisted of children with cleft lip and/or cleft palates, the extent of associated medical features varied. Diagnoses of FD children are shown in Table 1. Measures
Interview. A semistructured interview was conducted with each primary caregiver. Relevant information concerning family background and constellation, pertinent demographics, the child's developmental history, and related physical and psychological impairments of the child were explored.
TABLE 1 Summary of Primary Diagnoses and Associated Impairments of FD Children Diagnosis and Associated Impairments Frequency Cleft palate only Neuromotor/developmental delay Psychological-behavioral Auditory Visual Cognitive Cardiac Skeletal Urogenital Pulmonary Renal Cleft lip and palate Auditory Neuromotor/developmental delay Psychological-behavioral Gastrointestinal Muscular Cognitive Cleft lip only Visual Auditory Neuromotor/developmental delay Cardiac Skeletal Metabolic Crouzon syndromea Auditory Neurological Treacher Collins syndromeb Developmental Auditory Psychological-behavioral Visual Pierre Robin syndrome0 Cognitive Neurological/developmental delay Psychological-behavioral Goldenhar syndromed Developmental Auditory Facial hemiparesis Psychological-behavioral Microcephaly Neurological/developmental delay
14 7 7 6 4 3 2 2 2 1 1 10 4 3 2 2 1 1 3 1 1 1 1 1 1 2 1 1 2 1 1 1 1 2 1 1 1 1 1 1 1 1 1 1
Percentage 38.9
27.8
8.3
5.6
5.6
5.6
2.8
2.8 2.8
Note, n = 36 (total frequency does not equal 36 due to multiple diagnoses in some children). Characterized by a short upper lip, a drooping lower lip, shallow eye orbits, hypertelorism, and a beaklike nose. Other eye anomalies and ear defects may be present. b Characterized by slanted eyes; notched eyelids; depressed malar bones; deformities of the external, middle, and inner ear; a large fishlike mouth; and an unusual hairline. c Characterized by a small lower jaw and a large tongue that often occludes respiration. Congenital heart disease, digital anomalies, cleft palate, and eye and ear defects are often associated features. d Characterized by marked facial asymmetry, malformations of the ear, and skin growths on the eye. Clefts and cardiac, renal, skeletal, dental, and hearing abnormalities are often present.
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
254
BENSON, GROSS, MESSER, KELLUM, PASSMORE
The Social Support Questionnaire-Revised (SSQ-R). The 12-item SSQ-R is designed to reliably tap separate aspects of the concept of social support by assessing social supports in the time of a crisis, support networks that the individual views as unconditional, and support networks available on a daily basis (Sarason, Levine, Basham, & Sarason, 1983; Sarason, Sarason, Shearin, & Pierce, 1987). The SSQ-R consists of a series of questions concerning the present social support network of the individual; subjects are asked to name individuals in their environment who provide help or support. Additionally, subjects are asked to express, on a 6-point Likert scale ranging from very dissatisfied (1) to very satisfied (6), their degree of satisfaction with that particular support. Two sets of summary scores are obtained from these questions: the total number of perceived supportive individuals (N) and the satisfaction score (S). The overall N and S scores are obtained by dividing the sum of N and S scores for all items by 12, the number of items. Higher S scores indicate increased satisfaction with one's social support network. The Revised Denver Developmental Screening Test (RDDST). To obtain an accurate and sensitive measure of the severity or gravity of the child's impairments, we administered the RDDST. Considered to be one of the most extensively taught and validated developmental screening tests used in the world, the RDDST is designed to delineate specific developmental delays of children between 1 month and 6 years of age (Frankenburg, Dodds, Fandal, E. Kazak, & Cohrs, 1975). The RDDST is divided into four major segments of development behavior: gross motor, language, fine motor adaptive, and personal-social. Standardized on normal children, developmental tasks at each age level are considered to be reasonable indications of the abilities of the child. Failure at any level reflects developmental delay or significant difficulty in that particular behavioral domain. Impairment ratings. As one means of assessing the severity of the FD child's handicap, impairment ratings were calculated. Specific impairments including visual, auditory, neurological, cardiac, cognitive, behavioral or emotional, feeding, dental, and speech problems were assessed. Two sets of impairment ratings were devised: the caregiver report and the charted report of the child's impairments. Caregiver reports were determined by asking the respondent several standardized questions designed to determine whether an impairment was present in each domain listed. Similarly, the child's medical chart was examined at the Craniofacial Clinics for evidence of impairment. Specific medical criteria were utilized to assess the presence of an impairment (e.g., documented history of seizure activity, decibels of hearing loss, visual acuity). Both sets of impairment ratings for the FD children were determined by counting the number of domains in which the impairments were noted to occur. Scores on this measure could range from 0 to 8 domains of impairment (charted M = 3.78, SD = 2.22). Attractiveness ratings. The attractiveness of each child was additionally assessed and evaluated. Using the attractiveness rating procedure utilized by Hildebrandt and Fitzgerald (1979), 12 independent raters evaluated slides of each child on
a 5-point scale ranging from very cute (5) to not very cute (1). Each rater was trained by the experimenter and achieved adequate reliability (r = .85). Final ratings were based on the average attractiveness score for each child. Procedure Subjects in the FD group between the ages of 1 month and 5 years were randomly approached in the waiting room of the Craniofacial Clinics and were given a brief description of the purpose and procedures of the study. To eliminate selection bias, subjects were collected on eight separate occasions over a 2-year period. Thirty-nine individuals were invited to participate in the study; all but 3 responded favorably (their caregivers declined participation due to a lack of interest in the study). Upon caregiver acceptance to participate, the experimenter interviewed the primary caregiver and obtained relevant background and demographic information. The RDDST was then administered to the child and the caregiver by the experimenter. Immediately after, each caregiver completed the SSQ-R while the targeted child was photographed. Facial photographs were taken against a neutral color backdrop to prevent variation among pictures. Subjects in the NFD group were approached in the waiting room of a local pediatrician's office. Individuals were chosen, however, to match a specific subject in the FD group on the dimensions of age and sex. Data were collected on a daily basis over 6 months. The same experimental procedure was utilized.
RESULTS An initial set of analyses were conducted to assess the comparability of the FD and NFD groups on the demographic variables. No significant differences were observed between the FD and NFD groups on parents' marital status, parental age, birth order of the target child, parental race, and respondent to the study (mother, father, grandparent, foster parent). A comparison of parental socioeconomic status (SES) as measured by the Hollingshead (1980) Four-Factor Index of Social Position, however, indicated a significant difference, with parents of NFD children having a higher standard of living (FD M = 30.00, SD = 11.07; NFD M = 45.77, SD = 11.96). According to Hollingshead's groupings, socioeconomic scores of individuals ranging from 30 to 39 generally represent skilled craftsmen and clerical or sales workers. Similarly, individuals who score from 40 to 54 are often employed in a technical trade or are classified as a minor professional. In analyses utilizing the RDDST, developmental quotients as utilized by Frankenburg, Camp, Van Natta, Demersseman, and Voorhees (1971) and German, Williams, Herzfeld, and Marshall (1982) were determined. Developmental quotients were obtained by dividing scores on each section of the RDDST by the child's chronological age and multiplying by 100. This quotient allowed us to compare each child's developmental performance with his or her chronological age and yielded a more sensitive measure of impairment or disability.
255
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
SOCIAL SUPPORT NETWORKS
A one-way multivariate analysis of variance (MANOVA) was computed on the set of dependent variables (domains of the RDDST, attractiveness, SSQ-R N, and SSQ-R S) to assess for group (FD vs. NFD) differences. The MANOVA was selected as a method to protect against inflated Type I errorrates resulting from multiple t tests and correlated variables. The MANOVA was significant using the Pillais criterion, F(7, 64) = 15.64, p < .001. An inspection of the univariate results revealed significant differences in each of the variables, with the FD group experiencing less available social support, F(l, 70) = 4.52, p = .04, and less satisfaction with their social network, F(l, 70) = 70.83, p < .001. A comparison of the four categories of the RDDST (gross motor, fine motor, language, and personal-social) indicated that FD children were significantly delayed in gross motor, F(l, 70) = 18.05, p < .001, fine motor, F(l, 70) = 28.13,/? < .001, language, F(l, 70) = 33.88, p < .001, and personal-social, F(l, 70) = 20.16,/? < .001, skills. Additionally, an analysis of the attractiveness ratings indicated that FD children were perceived as less attractive than their control peers, F(l, 70) = 33.21, p < .001. Means and standard deviations for these findings are presented in Table 2. In an attempt to predict parental social support and perceived satisfaction with social support networks, we computed two multiple-regression analyses with SSQ-R N and SSQ-R S as criterion variables. The four domains of the RDDST, group membership (FD or NFD), and attractiveness ratings were used as predictor variables. These variables as a set were not significantly associated with SSQ-R N, F(6, 65) = 1.94, p = .09, but were significantly associated with SSQ-R S, F(6, 65) = 17.55, p < .001, multiple/?2 = .62. The predictor variables of group membership and the personal-social domain on the RDDST were the only variables providing independent contribution to the prediction of SSQ-R S (see Table 3). FD group membership (/3 = .54, p < .001) and personal-social impairment ((3 = .52, p = .005) were associated with less social support satisfaction. The relationships between group membership and social impairment remained significant even after controlling for SES through a hierarchical multiple-regression analysis in which SES was entered as the first step. Moreover, the relationship between personal-social impairment and SSQ-R S was the sole predictor in a regression analysis in the FD group only. TABLE 2 SSQ-R, RDDST, and Attractiveness Ratings by Group NFD
FD Variable SSQ-R N* S** RDDST Gross motor** Fine motor** Language** Personal-social** Attractiveness** Note. N =12. *p < .01. **p < .001.
M
SD
M
SD
1.86 3.69
1.74 1.43
2.63 5.80
1.33 0.46
76.36 76.30 73.53 78.46 2.13
30.53 26.79 26.48 26.94 0.96
98.55 100.01 99.36 98.85 3.22
7.04 1.26 2.64 4.01 0.59
Similarly, age interactions were tested to assess whether the effects of group status (FD or NFD), developmental functioning (RDDST), and attractiveness on SSQ-R S varied as a function of the child's age. Multiplicative interaction terms were formed and entered in a stepwise regression for the total sample and separately for the two groups. No terms were found to be statistically significant. Point-biserial correlations were computed separately for each charted (present or absent) impairment and SSQ-R S. Also, the relationship between total number of impairments (i.e., the sum of the charted impairments) and SSQ-R S was tested through a Pearson product-moment correlation. No significant point-biserial or Pearson correlations were observed, suggesting no simple relationship between the child's impairments and parental social support. The caregiver report and the charted report of impairments were additionally examined. McNemar comparison tests were run examining the caretaker report and the medically documented report of visual, auditory, neurological, cardiac, dental, cognitive, psychological-behavioral, developmental, and speech-language impairments. No significant differences were found between the caretaker report and the documented report of delay in any of the impairment domains, except in the psychological-behavioral and hearing categories. Parents of FD children significantly underreported the presence of psychological or behavioral problems (p = .006, n = 36) and hearing impairment (p = .002, n = 36) in their children.
DISCUSSION The results from this investigation indicate that parents of FD children have deficient social support networks and are significantly less satisfied with their available support than are the parents of matched controls. This finding is consistent with the literature examining families of children with other handicapping conditions (A. E. Kazak & Clark, 1986). The lack of social support that these parents appear to experience may be a result of several possibilities. Friends and family members may feel uncomfortable around an FD child and may have difficulty accepting and responding to a handicapped child. Many friends or relatives may experience discomfort when trying to relate to the new parents of an FD child and may prefer to reduce or avoid social contact. As suggested by other studies examining handicapped children, it is possible that parents may overprotect their FD child, alienating themselves from an existing social support network (Richman & Harper, 1978). Parental embarrassment or an inability to accept their FD child may additionally place strain on social outlets. The added strain and pressure of having an FD child may also contribute to differences in social supports. Financial obligations may prevent parents from participating in the life style they had previously enjoyed, thus reducing social contacts and forcing the parents of an FD child to become isolated. As expected, the severity of the FD child's impairments strongly influenced parental satisfaction with social support. When compared to age- and sex-matched controls, FD children (regardless of diagnosis) had significantly lower scores on
256
BENSON, GROSS, MESSER, KELLUM, PASSMORE
TABLE 3 Multiple-Regression Correlations of SSQ-R S on Group Membership, RDDST Domains, and Attractiveness
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Variable
SSQ-R S
Group membership RDDST Gross motor Fine motor Language Personal-social Attractiveness M SD Note.
Group Membership
RDDST Gross Motor
Fine Motor
Language
Personal-Social
Attractiveness
.70 .49 .57 .55 .61 .54 4.75 1.49
.45 .53 .57 .47 .56 .500 .504
.73 .69 .76 .46 87.45 24.67
.88 .88 .47 88.15 22.29
.81 .41 86.45 22.76
.48 88.66 21.70
P 0.54
.0001
-.06 -.09 -.09 0.52 0.09
.65 .65 .59 .005 .34
2.67 0.77
R2 = .62, adjusted R2 = .58, R = .79.
all domains of the RDDST. Although the standard deviations for each section of the RDDST were large, suggesting a wide continuum of impairments, these results support previous research and indicate the importance of developmental delay in parental satisfaction with social support (Fox, Lynch, & Brookshire, 1978). When compared to FD children without further medical involvement, parents of children with impairments in multiple domains are faced with additional financial and caregiving demands for an indefinite period of time. Consequently, these parents may deplete their resources of time and energy and may place a decreased emphasis on social activities and contacts. Past research investigating the social competence of FD children has repeatedly indicated a marked deficit in these skills (Fox et al., 1978; Goodstein, 1961; McWilliams & Matthews, 1979). It is not surprising, therefore, that our results corroborate these findings and suggest that the child's level of social competence is the best predictor of parental satisfaction with social support. FD children who have deficient social skills and who are unable to interact in an age-appropriate fashion may be perceived by adults as intrusive, demanding, and difficult. An inability to master developmental tasks such as playing interactive games and the ability to separate from one's mother may result in a child who needs more parental attention and care. Consequently, members of the family's social network may withdraw rather than tolerate the child's behavior. This difficulty is compounded by our finding that caretakers of FD children often underreport psychological or behavioral problems in their children. Although not an uncommon occurrence among parents of FD children, parental denial or nonrecognition of their child's behavioral difficulties may inadvertently affect social supports (Benson et al., 1990; Richman, 1978; Schneiderman & Auer, 1984). Parents who do not place boundaries and limitations on their child's behavior or who refuse to discipline their children may alienate members of their social network. Consequently, parents may experience diminishing social contacts and decreased satisfaction with their available supports. In addition to social competence, the attractiveness of the FD child may also play a role in social support. Although this variable has been demonstrated to be of considerable importance in interpersonal contacts, its relationship to social
support is unclear. Consistent with other literature, our results indicate that FD children (regardless of diagnosis) are rated as less attractive than matched controls (Tobiasen, 1987). Despite this finding, this variable did not appear to add much predictive power when examining parents' satisfaction with social support. Based on the vast body of literature supporting the impact of attractiveness on the attributions and opinions of others, it seems reasonable to expect a relationship between these variables to emerge (Dion, Berscheid, & Walster, 1972). In particular, the visibility of the child's impairment might influence interactional patterns. Parents of children with uncorrected or highly visible clefts may be responded to differently than parents of children with an invisible cleft palate. From this perspective, it is possible that our measure of attractiveness was not sensitive enough to capture the nuances of this relationship. Future research should attempt to delineate and discover the interaction of these factors. In the present study, a significant difference between the FD and NFD groups on SES was observed. It might be expected that families with more economic resources may perceive their available support more favorably. These parents may be better able to afford luxuries (babysitters, an evening out with friends), which may enhance and reinforce their social ties. Despite this reasoning, however, a regression analysis indicated that parental SES did not predict or influence social support satisfaction. It might also be argued that the collapsing of several craniofacial anomalies may confound the experiences of many parents. Although the majority of the sample consisted of children with cleft lip and/or cleft palate, the associated features of these conditions varied in their level of impairment. Despite the notion that the diagnosis or the number of the child's impairments may influence parental social supports, statistical analyses were unable to find any significant differences. Consequently, it appears that one of the important variables influencing parental social support is the severity of the child's developmental delay, not the child's diagnosis or the number of domains of impairment. This investigation is only a first step in understanding the importance of a social support network in the lives of parents of FD children. Many directions are apparent for future researchers to pursue and explore. In particular, the role of
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
SOCIAL SUPPORT NETWORKS other pertinent variables should be examined. Variables such as the quality and strength of the marital relationship, sibling support, parental residence (rural vs. urban), and caregiver depression may be significant predictors of one's social support network and satisfaction. Additionally, the perspective of other family members may provide an interesting contrast to that of the primary caregiver and eliminates the tendency to rely on one source for data. It is possible that the individual most responsible for the care of the FD child may have a different perception of the available social support network than the other family members in the same household. Finally, exploration of appropriate interventions to be implemented by health care professionals is warranted.
ACKNOWLEDGMENTS This research was supported by National Institutes of Health Grant DE08641. We thank the North Mississippi Cleft Palate Team and the University of Tennessee Health Science Center-Memphis Craniofacial Anomalies Clinic for their participation in this project. We also thank Joe T. Harris, MD, D. Winn Walcott, MD, Mark T. Dean, MD, and Rob Benson for their support of this research study.
REFERENCES Barden, R. C , Ford, M. E., Jensen, A. G., Rogers-Salyer, M., & Salyer, K. (1989). Effects of cranio-facial deformity in infancy on the quality of mother-infant interactions. Child Development, 60, 819-824. Benson, B. A., & Gross, A. M. (1989). The effect of a congenitally handicapped child upon the marital dyad: A review of the literature. Clinical Psychology Review, 9, 747-758. Benson, B. A., Sterling, R. S., & Sterling, J. (1990). The effect of a facially deformed child upon the marital dyad. Manuscript submitted for publication. Castellanos, M. C , & Stewart, M. (1964). Psychosocial implications in plastic surgery. In J. M. Converse (Ed.), Reconstructive plastic surgery (pp. 384-393). Philadelphia: Saunders. Dean, A., & Linn, N. (1977). The stress buffering role of social support. Journal of Nervous Mental Disease, 165, 403-417. Dion, K. K., & Berscheid, E. (1974). Physical attractiveness and peer perception among children. Sociometry, 37, 1-12. Dion, K. K., Berscheid, E., & Walster, E. (1972). What is beautiful is good. Journal of Personality and Social Psychology, 24, 285-290. Drotar, D., Baskiewicz, A., Irvin, N., Kennell, J., & Klaus, M. (1975). The adaptation of parents to the birth of an infant with a congenital malformation: A hypothetical model. Pediatrics, 56, 710-717. Field, T. M., & Vega-Lahr, N. (1984). Early interactions between infants with craniofacial anomalies and their mothers. Infant Behavior Development, 7, 527-530. Fox, D., Lynch, D., & Brookshire, B. (1978). Selected developmental factors of cleft palate children between two and thirty-three months of age. Cleft Palate Journal, 15, 239-245. Frankenburg, W. K., Camp, B. W., Van Natta, P. A., Demersseman, J. A., & Voorhees, S. F. (1971). Reliability and stability of the
257
Denver Developmental Screening Test. Child Development, 42, 1315-1325. Frankenburg, W. K., Dodds, J. A., Fandal, A., Kazak, E., & Cohrs, M. (1975). Manual for the Revised Denver Developmental Screening Test (rev. ed.). Denver: University of Colorado Press. Friedrich, W. N. (1979). Predictors of the coping behavior of mothers of handicapped children. Journal of Consulting and Clinical Psychology, 47, 1140-1141. Friedrich, W. N., & Friedrich, W. L. (1981). Psychosocial assets of parents of handicapped and nonhandicapped children. American Journal of Mental Deficiency, ;85, 551-553. German, M. L., Williams, E., Herzfeld, J., & Marshall, R. M. (1982). Utility of the Revised Denver Developmental Screening Test and the Developmental Profile II in identifying preschool children with cognitive, language, and motor problems. Education and Training of the Mentally Retarded, 17, 319-324. Goodstein, L. D. (1961). Intellectual impairment in children with cleft palates. Journal of Speech and Hearing Research, 4, 287-294. Hildebrandt, K. A., & Fitzgerald, H. E. (1979). Facial feature determinants of perceived infant attractiveness. Infant Behavior and Development, 2, 329-339. Hittleman, J., Emde, R. N., & Simons, R. C. (1985). Birth, postpartum, and the parent-infant interaction. In R. C. Simons (Ed.), Understanding human behavior in health and illness, (pp. 137-150). Baltimore: Williams & Wilkins. Hollingshead, A. B. (1980). Four Factor Index of Social Position (Mimeograph). Kazak, A. E., & Clark, M. W. (1986). Stress in families of children with myelomeningocele. Developmental Medicine and Child Neurology, 28, 220-228. Kazak, A. E., & Wilcox B. L. (1984). The structure and function of social support networks in families with handicapped children. American Journal of Community Psychology, 12, 645-661. Langlois, J. H., & Stephan, C. (1977). The effects of physical attractiveness and ethnicity on children's behavioral attributions and peer preferences. Child Development, 48, 1694-1698. McWilliams, B. J., & Matthews, H. P. (1979). A comparison of intelligence and social maturity in children with unilateral complete clefts and those with isolated cleft palates. Cleft Palate Journal, 16, 363-372. McWilliams, B. J. Morris, H. L., & Shelton, R. L. (1984). Cleft palate speech. Philadelphia: Decker. Mueller, D. (1980). Social networks: A promising direction for research on the relationship of the social environment to psychiatric disorder. Social Science Medicine, 40, 147-161. Peacock, J. L., & Starr, P. (1980). An outreach program for families of infants with a cleft lip and/or palate. Children Today, 9, 23-26. Pilisuk, M. (1982). Delivery of social support: The social innoculation. American Journal of Orthopsychiatry, 52, 20-31. Richman, L. C. (1978). Parents and teachers: Differing views of behavior of cleft palate children. Cleft Palate Journal, 15, 360-364. Richman, L. C , & Harper, D. (1978). Observable stigmata and perceived maternal behavior. Cleft Palate Journal, 15, 215-219. Sarason, I. G., Levine, H. M., Basham, R. B., & Sarason, B. R. (1983). Assessing social support: The Social Support Questionnaire. Journal of Personality and Social Psychology, 44, 127-139. Sarason, I. G., Sarason, B. R., Shearin, E. N., & Pierce, G. R. (1987). A brief measure of social support: Practical and theoretical implications. Journal of Social and Personal Relationships, 4, 497-510. Schneiderman, C. R., & Auer, K. E. (1984). The behavior of the child with cleft lip and palate as perceived by parents and teachers. Cleft Palate Journal, 21, 224-228. Schneiderman, C. R., & Hardin, J. B. (1984). Social ratings of
258
BENSON, GROSS, MESSER, KELLUM, PASSMORE
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
children with cleft lip by social peers. Cleft Palate Journal, 21, 219-223. Solnit, A. J., & Stark, M. H. (1961). Mourning and the birth of a defective child. Psychoanalytic Study of the Child, 16, 523-537.
Spriestersbach, D. C. (1973). Psychosocial aspects of the cleft palate problem (Vol. 1). Iowa City: University of Iowa Press. Tobiasen, J. M. (1987). Social judgements of facial deformity. Cleft Palate Journal, 24, 323-327.
