ABSTRACT
OBJECTIVE: Psychosocial adjustment can be challenging for children with cleft lip with or without a cleft palate (CL ± P). Previous studies have linked social integration with self-acceptance and highlighted the impact of the parents' stress on self-acceptance. Teasing can be linked to children having difficulties explaining their diagnosis to others. This prospective research aimed to gain a better understanding of family communication about cleft, children's oral storytelling about their cleft, and explore their self-image and perceived familial acceptance. PARTICIPANTS: Parents and their children with CL ± P (N = 54; average age: 5.6 years). DESIGN: Semistructured interviews with parents and structured interviews with children were conducted regarding their oral storytelling focusing on scars from cleft lip surgery. Children completed a projective test to explore their self-image and perceptions of familial acceptance. Language screening was completed with the French Wechsler Preschool Primary Scale of Intelligence-Fourth Edition. RESULTS: Only 30% of children explained their cleft in a way appropriate for peers, including presence at birth, having had surgery, and scar location. Children's ability to explain their cleft was not related to language performance, which was in the average range of 84%. Children's cleft explanations were dependent on parents' narratives and education methods, including the use of verbal explanations and preoperative photographs. Children's storytelling was related to their self-image and perceived parental acceptance. CONCLUSION: Cleft teams should assist families in building their cleft story based on a complete explanation with photographs and a positive and accepting approach.
ABSTRACT
Background: Social withdrawal is a risk indicator for infant development with both organic and non-organic causes. Cleft lip and palate (CLP) impose a higher risk of physical and emotional distress in infants and alters parent-infant relationships. The ADBB scale is a screening tool to identify social withdrawal as a sign of distress in infants. The aim of this study is to evaluate the prevalence of social withdrawal behavior in infants with CLP using the full 8-item ADBB scale and the modified 5-item ADBB scale, and to examine the feasibility of both scales. Methods: 145 infants with Cleft Lip and Palate were enrolled and video recorded during a pediatric consultation. All infants were scored by two expert raters trained in ADBB scale, and subsequently scored with the m-ADBB by an independent expert. We measured the interrater agreement for the full ADBB scale and psychometric properties of both scales. Results: The full ADBB scale identified 15.9% of infants as having social withdrawal behavior (score above cutoff ≥5). Among the infants evaluated with the m-ADBB scale, 44.9% had a score above the suggested cutoff (≥2). For both scales, the item "vocalization" showed the higher scores. We found a good internal consistency for the full ADBB (Cronbach's alpha = 0.82) and an acceptable internal consistency for the modified ADBB (Cronbach's alpha = 0.71). The interrater agreement for the full ADBB scale was excellent (kappa = 0.837). The Spearman correlation coefficient between the total scores of the two versions was 0.88 (P < 0.001). Conclusion: Our results indicate a relatively high prevalence of social withdrawal in infants with Cleft Lip and Palate, especially evaluated with the modified 5-item ADBB scale. We found that the full ADBB and the modified ADBB scales are feasible to use as screening tools of social withdrawal in this population. Clinical Trial Registration: This trial is registered on ClinicalTrials.gov, identifier: NCT00993993. The data is the property of Assistance Publique, Hôpitaux de Paris.
ABSTRACT
BACKGROUND: The objective of this prospective, multidisciplinary and multicenter study was to explore the effect of a cleft lip, associated or not with a cleft palate, on parents, on parent-infant relationship, and on the baby's relational development. It also highlighted how the type of cleft and the timing of the surgery could impact this effect. METHOD: 158 infants, with Cleft lip with or without Palate, and their parents participated in this multicenter prospective cohort. Clinical evaluations were performed at 4 and 12 months postpartum. The impact on the parents and on the parent-infant relationship was evaluated by the Parenting Stress Index (PSI), the Edinburgh Post-partum Depression Scale (EPDS) and the Impact-on-Family Scale (IOFS). The relational development of the infant was assessed using the Alarm Distress Baby Scale (ADBB). The main criteria used to compare the infants were the severity of cleft and the time of surgery. RESULTS: The timing of surgery, the type of malformation or the care structure had no effect on social withdrawal behaviors of the child at 4 and 12 months postpartum (ADBB). Furthermore, early intervention significantly decreased maternal stress assessed with the PSI at 4 months. Parents for whom it had been possible to give a prenatal diagnosis were much better prepared to accept the waiting time between birth and the first surgical intervention (IOFS). Higher postpartum depression scores (EPDS) were found for both parents compared to the general population. CONCLUSION: A joint assessment of the mental health of both infants and parents is required in the follow-up of cleft lip and palate. Even if most families are remarkably resilient faced with this major cause of stress, a significant proportion of them could require help to deal with the situation, especially during this first year of follow-up. An assessment of the child's social withdrawal behaviour and of the parental stress and depression appears useful, in order to adapt care to infant and parent's needs. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT00993993. Registered 10/14/2009 <.