Psychosocial problems and referrals among oral-facial team patients.

This study examined the Psychosocial status and referral needs among 104 patients with oral-facial defects. The patients had (1) cleft lip and palate, (2) cleft palate (3) cleft lip, (4) speech disorder with no structural defect, or (5) facial deformities. The subjects were between 11 months and 18 years old. Based on interview data and results from standardized tests, the subjects' cognitive, emotional, and behavioral and family functioning were determined. Using descriptive statistics, approximately 56% of the patients had problems warranting psychosocial referrals. A stepwise regression model revealed that gender, intelligibility, and diagnostic category of speech disorder and facial disfigurement were significantly associated with patients' psychosocial status. implications for rehabilitation centers treating patients with oral-facial defects are discussed.

The literature regarding psychosocial status among patients with oral-facial defects has identified areas of psychosocial risks in this population. Typically, the research assesses and studies one dimension of psychosocial function. Such research has revealed that patients with clefts may have significant psychosocial needs and problems in the areas of cognitive, emotional, behavioral and family functioning.

Recent studies of self-concept (Broder et al., 1989), (KappSimon, 1986), psychoeducational development (Richman, 1989), social perception by peers (Tobiason, 1987), parents and teachers (Schneiderman and Aver, 1984) and the public (Middleton et al., 1986) identify the psychosocial risks among school-age children with clefts. Studies of adolescents with cleft lip and palate establish that appearance and speech may remain problematic (Richman, 1983) even in patients who have had extensive surgical and team-based care (Strauss et al., 1988). Studies of parental tolerance of conduct problems and school experience with children who have clefts suggest that there is an association between speech difficulties and facial disfigurement and the increased reporting of conduct problems at home and behavioral and learning problems at school (Tobiason and Hiebert, 1984), (Richman, 1989). Studies of cognitive function and intellectual status within the cleft population report lower verbal IQ scores and language deficiencies, and lower mean IQ scores, than nonnative data (Richman and Eliason, 1982). Children with isolated cleft palate sometimes demonstrate more severe reading disabilities (Richman et al., 1988). These children tend to underachieve relative to their intellectual ability and teachers tend to underestimate the intellectual ability of children with more severe, cleft-related facial deformities (Richman and Harper, 1978). Self concept of children with clefts appear to be lower than noncleft cohorts (Broder, 1989). Subjects with facial clefts are reported more concerned about their physical self concepts (Tobiasen et al., 1987). Children with facial clefts and intelligibility problems may be at higher risk for poor self concept. Additional congenital malformations increase the likelihood of school and home behavior problems. Inhibition and shyness are observed more frequently among individuals with clefts (Tobiasen and Hiebert, 1984). Adjustment and achievement problems are noted among adolescents with clefts (Richman, 1989). Adults with clefts report less dating experiences and marry later in life (Peters and Chinsky, 1974).

These psychological studies have not examined the patients' psychosocial problems and referrals concomitantly nor from a team perspective. If the ultimate goal of rehabilitation for patients evaluated by cleft/craniofacial teams is to improve the quality of their lives and to help them realize their potential, then assessing the patient's psychosocial status is essential.

Psychosocial status is defined as the patients' cognitive, social, and behavior skills and their family stability. The goals of this study include:

(1) identifying the incidence and type of psychosocial problems/referrals by a cleft/craniofacial treatment team in the study sample,

(2) examining whether patients who require psychosocial referrals are more likely to have multiple psychosocial problems and

(3) determining if there are significant independent variables associated with psychosocial problems warranting referrals in the sample.

Methods

Subjects

The subjects in this study were 104 patients consecutively evaluated at the Oral-Facial and Communicative Disorders Program. The sample included 52 males and 52 females. Based on the patients' medical diagnosis, subjects are assigned to one diagnostic category 1) cleft lip and palate (N = 32), 2) cleft palate (N = 35), 3) cleft lip (N = 9), 4) speech disorder typically velopharyngeal incompetency with no structural defect) (N = 12), or (5) facial deformity (typically a handicapping malocclusion) (N = 16). Subjects with syndromes, such as fetal alcohol syndrome, were excluded because of the psychosocial problems intrinsic to the medical condition.

The subjects were between 11 months and 18 years of age. They were grouped by age ascribed to die psychosocial stages and typical school placement (preschool, elementary, secondary school). Thirty-five subjects were between 11 months and 6 years of age; thirty-seven between 6 and 12 years; and thirty-two between 12 and 18 years old.

Each patient/family underwent evaluations by the specialists of the cleft/craniofacial team. Each patient/family completed a standardized questionnaire developed 15 years ago by the Oral Facial Program which included patient history and diagnostic information. The team members also obtained background data, school records and reports from agencies which were deemed relevant to the patients' treatment needs. The team included dentists, speech pathologist, social worker, psychologist, plastic surgeon, pediatrician, or family medicine physician, audiologist, and ENT doctor. At the team meeting the specialists shared their clinical findings and developed a treatment plan. This plan incorporated treatment and/or referrals for patients' medical, dental, speech and psychosocial needs and concerns.

Instrumentation Measures

The craniofacial treatment team utilized data from a variety of sources to make psychosocial referral decisions. The team had a psychologist, social worker, as well as clinicians from other disciplines that consider the psychosocial needs of patients. Speech pathologists, dentists, pediatricians and plastic surgeons were frequently able to identify psychosocial problems, but referral decisions were carried out by the mental health professional. The psychologist and social worker classified problems based upon team consensus and their own clinical findings.

Psychosocial Status was determined by mental health professionals' assessments of patients' cognitive, social, and behavioral skills, and family stability. Psychosocial status may be used as a measurement of patients' demonstrating or being at risk for problems that warrant psychological treatment (i.e. psychotherapy, special school placement). Behavioral observations, standardized test results, parental and school reports, and interview data were used to assess patients' psychosocial status. Psychosocial referrals were made in response to problems or deficits in at least one of four main dimensions:

Cognitive Problems included mental retardation, developmental delays and/or learning disabilities. For children between I year and 3 years of age the Denver Developmental Screening Test  (Finkenburg et al., 1975) and/or the Bailey Scales (Bailey, 1967) were used to measure cognitive ability. The Stanford Binet Intelligence Scale, Form L-M (Thorndike, 1974) and the Wechsler Intelligence Scale for Children-Revised (Wechsler, 1974) were utilized to assess children between 3 and 6 years old and 6 and 18 years old, respectively. The California Achievement Test provided data about children's achievement level in school. Deficits were identified in adherence to the test authors' recommendations. Cognitive problems or learning deficits generated referrals to school-based exceptional services (special education programs; early childhood intervention programs, Parent and Child Training teams, and vocational counseling).

Adaptive Behavior Problems reflect an inability to demonstrate personal independence and social adaptive skills expected at the patient's age. Responses from standardized parent(s) and school questionnaires, Vineland Social-Maturity Scales (Doll, 1974), and behavioral observations were used to identify patients with adaptive behavior problems. Behavioral problems generated referrals to mental health or school counselors.

Emotional Stability include issues relating to personality factors and self-concept. Personality assessment tools included the Primary Self-Concept Inventory (Muller and Leonetti, 1974) and the Piers-Harris Self-Concept Scale (Piers, 1984) for primary and secondary school age children, respectively. Standardized school and parental reports, and interview data developed by the Oral Facial Program were also utilized to measure emotional stability. Problems related to emotional stability generated referrals to mental health or school Counselors.

Family Instability was defined as problems specifically related to the birth defect (i.e. unresolved guilt, sibling social work, school and parental reports, psychological interview, and behavioral observations. Consensus by the team members was obtained before referrals were carried out. Family problems typically generated referrals to social work agencies, mental health counselors and support groups.

The referral process is diagrammed in Figure One. This figure illustrates the psychosocial referral criteria and potential sites.

Results

By using descriptive statistics, cross-sectional analysis revealed the frequency and type of psychosocial problems warranting referrals in the study sample. Table I depicts type of psychosocial referrals. Thirty-five percent (N = 36) of the sample presented with cognitive problems; one third (N = 35) had behavioral problems; twenty-six percent (N = 28) had emotional problems, and thirty percent (N = 31) had family problems associated with the birth defect. In each of the cleft categories, from one-quarter to one-third of the patients were at risk or exhibit deficits.

Table 2 reveals the patients' psychosocial status by diagnostic group. Fifty-six percent (N =58) of the total sample had one or more psychosocial problem. Of the 76 patients with clefts, one-half of the subjects (N = 39) had a psychosocial problem generating a referral. The highest referral rate (56%) among patients with clefts was the cleft lip and cleft palate group. Eighty-three percent (N = 10) of patients with speech disorders and 69% (N = 11) of those with facial disfigurement had impaired psychosocial status.

Table 3 depicts the psychosocial status by age group. Problems are noted in at least seventy percent of the subjects beyond age six. In children less than 3 years old, thirty-six percent were found to have psychosocial problems. In children 3-6 years old, thirty-one percent had problems. Sixty-two percent of the children between six and 12 years of age and seventy-two percent from 12 to 18 years of age had impaired psychosocial status.

Frequency statistics on psychosocial status by subjects' gender were also obtained. Among the females in this sample, 58% (N = 30) did not have problems warranting a psychosocial referral and 42% (N = 22) were found to have problems. Among the males 3 1 % (N = 16) did not need a psychosocial referral and 69% (N = 36) were referred for psychosocial problems.

To determine whether there were gender differences in psychosocial function (regardless of subjects' age), an analysis of covariance was performed. The results of the analysis revealed an F value of 2.17 (p .15). This F value was not significant at the.05 level. Therefore after age differences were controlled, no gender differences in psychosocial status were observed. However, a higher incidence of problems was observed among older subjects, in particular older males.

The second purpose of the study was to identify the frequency of subjects with one problem not having other psychosocial problems. To examine the possibility of an increased likelihood of a clustering effect, a Z statistic was used. This test determined whether a subject who has one problem was more likely to have multiple problems. Sixty-three subjects had one psychosocial problem, and thirty-seven subjects had multiple problems. The Z statistic of 1.386 (p. 16) was obtained. No significant tendency for subjects with one problem to have multiple problems was observed.

To determine the variables significantly correlated with the patients' psychosocial status, a stepwise regression model was used. The results are presented in Table 4. The lower the age group, as revealed by the negative - 1.07, the less likely the patient had psychosocial deficits at the p < -002 level. Females were assessed to have fewer problems than males. Greater intelligibility was predictive of less problems in the study sample at the p<.004 level in the subjects' speech problems and facial deformity diagnostic category. The results indicate that age group, intelligibility, gender and diagnostic category of speech disorder and facial deformity unrelated to cleft type were significantly associated with psychosocial status.

Discussion and Conclusions

The findings of this investigation indicate that 56 percent of the patients evaluated at the Oral-Facial Program exhibit problems that warrant psychosocial referrals. The referrals reflected cognitive delays, behavioral deficits, family and/or emotional instability in the study sample. These findings support previous psychological research reporting cognitive or developmental deficits (Richman and Eliason, 1982), emotional instability (Broder and Strauss, 1989), maladjustment, or inappropriate behavior (Richman and Eliason, 1984) and family dysfunction (Tobiasen et al., 1987) (Broder et al., 1989) among subjects with oral-facial defects. Seventy percent of the sample beyond age twelve were identified with at least one psychosocial problem.

The higher incidence of psychosocial problems among males, in particular adolescent boys, lends credence to the possibility that males with clefts are more apt to have behavior problems, lower achievement and unresolved family issues (Richman, 1983, Broder, 1989).

The data support the notion that increasing age may be associated with increased psychosocial difficulties (Kapp, 1979). This trend is not unusual, but the incidence and variety of impairment, regardless of diagnostic category, is noteworthy. The higher incidence of deficits among subjects with speech disorders and facial deformity is difficult to interpret due to the small sample. Perhaps these patients without an early medical diagnosis have increased difficulty with self-acceptance issues as they get older, or those patients who ultimately seek evaluation at a cleft/craniofacial treatment site frequently have psychosocial problems. However, to avoid sampling bias, replication is imperative before any generalization can be made. Longitudinal analysis of the study sample to reveal trends over time is suggested. Use of a control group for comparative analysis is also recommended.

Certainly rehabilitation of individual s with clefts or craniofacial anomalies must address the obvious medical and dental concerns associated with the structural and functional defects. However, only twenty percent of cleft/craniofacial teams routinely assess psychosocial factors in the patients (Broder and Richman, 1987). This omission ignores a core variable in rehabilitation (Stone et al., 1984; Fitts, 1972). Psychological assessment is the first step in understanding patients and family psychosocial function.

In summary, the findings of this investigation lend credence to the hypothesis that patients with oral-facial defects are at risk for psychological dysfunction. Furthermore, because of the range of referral problems found in this study, a variety of assessments may be needed. Early assessment and treatment of psychosocial issues could minimize problems which manifest more frequently among adolescents.

References

Arthur, G. (1952). Leiter International Performance Scale. Chicago, IL: C. H. Stoelting Co.

Bailey, N. (1969) Bailey Scales of Infant Development. New York:Psychological Corporation.

Broder, H., Gallagher, P., Uhrich, K., and Edwards, L. (1989). Examining family systems among patients with cleft lip/palate. Paper presented at the American Cleft Palate-Craniofacial Association Convention, San Francisco, CA.

Broder, H.L. & Richman, L. (1987). An examination of mental health services for cleft/craniofacial patients. Cleft Palate Journal, 24, 158-163.

Broder, H. & Strauss, R. (1989). Self-concept of early primary school-age children with visible or invisible defects. Cleft Palate Journal, 26, 114-117.

CTB.(1985). California Achievement Test. New York: McGraw Hill.

Clifford, E. & Brantley, H.T. (1977). When I was born: Perceived parental reactions of adolescents. Journal of personality Assessment, 41, 604-609.

Doll, E.A. (1974). Vineland Social Maturity Scale. Minnesota: American Guidance Services, Inc.

Fitts, W.H. (1972). The self-concept and behavior. Nashville: Counselor Recordings and Tests.

Frankenburg, W.K., Dodds, J.B., Fandal, A.W., Kazuk, M.A. & Cohrs, M. (1975). Denver Developmental Screening Test. Colorado: CADOCA Publishing.

Kapp K. (1979). Self-concept of the cleft lip and/or palate child. Cleft Palate Journal, 16, 171-176.

Kapp-Simon, K. (1986). Self-concept of primary-school age children with cleft lip, cleft palate, or both. Cleft Palate Journal, 23, 24-27.

Middleton, G.F., Lass, N.J., Starr, P. and Pannbacker, M. (1986). Survey of public awareness and knowledge of cleft palate. Cleft Palate Journal, 23:58.

Muller, D.G. & Leonetti. (1974). Primary Self-Concept Inventory. Massachusetts: Teaching Resources Corporation.

Peters, J.P. & Chinsky, R.R. (1974). Sociological Aspects of Cleft Palate Adults: I Marriage. Cleft Palate Journal, 11:443-449.

Piers, E. (1984). Piers-Harris Self-Concept Scale. California: Western Psychological Services.

Richman, H. & Eliason, M. (1982). Psychological characteristics of children with cleft lip/palate: intellectual achievement, behavioral and personality variables. Cleft Palate Journal, 19, 249-257.

Richman, L. (1983). Self-reported social, speech and facial concerns and personality adjustment of adolescents with cleft lip and palate. Cleft Palate Journal, 20:108.

Richman, L. (1989). The relationship of parenting, academics, speech, and facial appearance to psychological adjustment of cleft lip and palate youth. Paper presented at the American Cleft Palate-Craniofacial Association Convention, San Francisco, CA.

Richman, L.C. & Eliason, M. (1984). Type of reading disability related to cleft type and neuropsychological patterns. Cleft Palate Journal, 21, 1-6.

Richman, L.C., Eliason, M.J., & Lindgren, S.D. (1988). Reading disability in children with clefts. 24, 1, 21-25.

Richman, L.C., Harper, D.C. (1978). Observable stigmata and perceived maternal behavior. Cleft Palate Journal, 15:215-219.

Schneiderman, C.R. and 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.

Sigelman, C.K., Miller T.E., & Whitworth, L.A. (1986). The early stigmatizing reactions to physical differences. Journal of Applied Developmental Psychology, 7, 17-32.

Stone, G.C., Cohen F., Adler, N.E. (1984). Health Psychology. San Francisco: Jossey-Bass, Inc.

Strauss, R., Broder, H. & Helms, R.W. (1988). Perceptions of appearance and speech by adolescent patients with cleft lip and palate and by their parents.

Thorndike, R.L., Hagen, E.P. & Sattler, J.M. (1974). StanfordBinet Intelligence Scale, Form L-M. Riverside, Illinois: Riverside Publishing Corporation.

Tobiasen, J.M. & Hiebert, J.M. (1984). Parents' tolerance for conduct problems of cleft palate children. Cleft Palate Journal, 21, 82-85.

Tobiasen, J.M., Levy, J., Carpenter, M.A. & Hiebert, J.M. (1987). Type of facial cleft, associated congenital malformations and patients' ratings of school and conduct problems, Cleft Palate Journal, 24, 209-215.

Wechsler, D. (1974). Wechsler Intelligence Scale for ChildrenRevised. New York: Psychological Corporation.

Received:   January 1989
Revised:    May 1989
Accepted:   July 1999