Cleft lip and palate psychosocial issues

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Editor-In-Chief: C. Michael Gibson, M.S., M.D. [1]

Overview

Psychosocial issues

Having a cleft palate does not inevitably lead to a psychosocial problem. Most children who have their cleft lips repaired early have a happy youth and a healthy social life. However, it is important to remember that adolescents with cleft palate are at an elevated risk for developing psychosocial problems especially those relating to self concept, peer relationships, and appearance. It is important for parents to be aware of the psychosocial challenges their adolescents may face and to know where to turn if problems arise.

A cleft palate may impact an individual’s self-esteem, social skills, and behavior. There is a large amount of research dedicated to the psychosocial development of individuals with cleft palate. Self-concept may be adversely affected by the presence of a cleft palate. Research has shown that during the early preschool years (ages 3-5), children with cleft palate tend to have a self-concept that is similar to their peers without a cleft. However, as they grow older and their social interactions with other children increase, children with clefts tend to report more dissatisfaction with peer relationships and higher levels of social anxiety. Experts conclude that this is probably due to the associated stigma of visible deformities and speech abnormalities, if present. Children who are judged as attractive tend to be perceived as more intelligent, exhibit more positive social behaviors, and are treated more positively than children with cleft palate.[1] Children with clefts tend to report feelings of anger, sadness, fear, and alienation from their peers. Yet these children were similar to their peers in regard to “how well they liked themselves.”

The relationship between parental attitudes and a child’s self-concept is crucial during the preschool years. It has been reported that elevated stress levels in mothers correlated with reduced social skills in their children.[2] Strong parent support networks may help to prevent the development of negative self-concept in children with cleft palate. In the later preschool and early elementary years, the development of social skills is no longer only impacted by parental attitudes but is beginning to be shaped by their peers. A cleft palate may affect the behavior of preschoolers. Experts suggest that parents discuss with their children ways to handle negative social situations related to their cleft palate. A child who is entering school should learn the proper (and age-appropriate) terms related to the cleft. The ability to confidently explain the condition to others may limit feelings of awkwardness and embarrassment and reduce negative social experiences.[3]

As children reach adolescence, the period of time between age 13 and 19, the dynamics of the parent-child relationship change as peer groups are now the focus of attention. An adolescent with cleft palate will deal with the typical challenges faced by most of their peers including issues related to self esteem, dating, and social acceptance.[4][5][6] Adolescents, however, view appearance as the most important characteristic above intelligence and humor.[7]This being the case, adolescents are susceptible to additional problems because they cannot hide their facial differences from their peers. Males typically deal with issues relating to withdrawal, attention, thought, and internalizing problems and may possibly develop anxiousness-depression and aggressive behaviors.[6] Females are more likely to develop problems relating to self concept and appearance. Individuals with cleft palate often deal with threats to their Quality of life for multiple reasons including: unsuccessful social relationships, deviance in social appearance, and multiple surgeries. Individuals with cleft palate often have lower QOL scores than their peers. Psychosocial functioning of individuals with cleft palate often improves after surgery, but does not last due to unrealistic expectations of surgery.

Controversy

In some countries cleft lip or palate deformities are considered reasons (either generally tolerated or officially sanctioned) to perform abortion beyond the legal fetal age limit, even though the fetus is not in jeopardy of life or limb. Some human rights activists contend this practice of "cosmetic murder" amounts to eugenics. A British clergywoman, Joanna Jepson, who suffered from a congenital jaw deformity herself (not a cleft lip or palate as is sometimes reported), has started legal action to stop the practice in the UK as reported by CNN[8] and the BBC.[9] Note that in the UK, an abortion could never be justified under the 1967 Abortion Act on the basis that a cleft lip and palate is not considered a serious handicap.

References

  1. Tobiasen, J.M. (1984) Psychosocial correlated of congenital facial clefts: a conceptualization and model. Cleft Palate Journal, 21, 131-139.
  2. Pope AW, Ward J (1997). "Self-perceived facial appearance and psychosocial adjustment in preadolescents with craniofacial anomalies". Cleft Palate Craniofac. J. 34 (5): 396–401. PMID 9345606.
  3. "Cleft Palate Foundation". Retrieved 2007-07-01.
  4. Snyder HT, Bilboul MJ, Pope AW (2005). "Psychosocial adjustment in adolescents with craniofacial anomalies: a comparison of parent and self-reports". Cleft Palate Craniofac. J. 42 (5): 548–55. doi:10.1597/04-078R.1. PMID 16149838.
  5. Endriga MC, Kapp-Simon KA (1999). "Psychological issues in craniofacial care: state of the art". Cleft Palate Craniofac. J. 36 (1): 3–11. PMID 10067755.
  6. 6.0 6.1 Pope, A.W. & Snyder, H.T. (2004). Psychosocial adjustment in children and adolescents with a craniofacial anomaly: Age and sex patterns. The Cleft Palate-Craniofacial Journal, 42, 4.
  7. Prokohorov, A.V., Perry, C.L., Kelder, S.H., & Klepp, K.I. (1993). Lifestyle values of adolescents: Results from the Minnesota Heart Health Youth Program. Adolescence, 28.
  8. "CNN.com - Priest challenges late abortion - Dec. 1, 2003". Retrieved 2007-07-01.
  9. "BBC NEWS". Retrieved 2007-07-01. Text " Hereford/Worcs " ignored (help); Text " CPS examines late abortion case " ignored (help); Text " England " ignored (help)



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