Questionnaire Survey of Attitudes and Concerns of Patients with Cleft Lip and Palate and Their Parents

Abstract

The self-perceived problems and concerns of patients with complete unilateral cleft lip and palate and their parents were investigated. Thirty-two patients ranging in age from 16 to 25 years (mean = 19.9 years) and their parents were sent questionnaires by mail. Twenty-eight patients and 30 parents completed the questionnaires. The results suggest that the patients were satisfied with the treatment they had received. They believed that the efforts of the members of the cleft palate team had been successful, and they were generally satisfied with their overall facial appearance and speech. There were, however, specific aspects with which they were less satisfied; their nose, lip, profile, speech, and teeth. They did not feel significantly socially or emotionally handicapped, although they noted that they had been teased and that they found relations with the opposite sex difficult. Their parents were also generally satisfied with all aspects of treatment and their child's appearance and speech. They identified those areas that their child was most concerned with, but did not fully appreciate how satisfied their child was with his or her facial features. The parents felt that their children were socially and emotionally affected by their cleft and felt their school results had also been affected.

Opportunities and Challenges in Establishing a Cohort Study: An Example from Cleft Lip/Palate Research in the United Kingdom

“…For the child, looking and/or sounding different to their peers may interfere with social interaction and invite some degree of teasing or bullying (Hearst, 2007). Difficulties surrounding emancipation from the family unit and the initiation of intimate relationships may also be problematic (Noar et al, 1991;Danino et al, 2005). For prospective parents, decision making around starting or expanding a family may evoke distress due to the recurrence risk (Stock and Rumsey, in press).…”

Social function in boys with cleft lip and palate: Relationship to ventral frontal cortex morphology

“…In addition to the cognitive deficits, social dysfunction has been identified repeatedly and in high frequency in individuals with ICLP, as recently reviewed [38]. In general, individuals with ICLP are more likely to be socially inhibited or shy and report fewer friends than noncleft controls [17,31,41,42,50,58]. They are also less likely to join clubs or societies in school and less likely to marry [19,48].…”

Oral health-related quality of life, and satisfaction with treatment and treatment outcomes of adolescents/young adults with cleft lip/palate: an exploration

“…Research showed that these patients might experience a loss of self-image and selfesteem 5,7,23 , anxiety, depression, and social stigma throughout their lives 5,7,23 . These psychosocial effects may affect educational, career, and social opportunities 16,24 . Psychosocial outcome studies for patients with CL/P suggested that the influence of the family on the children's perception of their CL/P is paramount in the development of children's self esteem and perception of their condition 23 .…”