The relational development of infants with CLP: impact on parents and on the parent-infant relationship. Results from the first French prospective multicenter CLP study.

Abstract

Background : The objective of this prospective, multidisciplinary and multicenter study was to explore the impact of a cleft lip, whether or not in association with a cleft palate (CLP) on the parents, on the parent-infant relationship, and on the infant’s relational development, depending on the type of malformation and the timing of the repair surgery, at 4 and 12 months postpartum. Method : 158 infants with CLP 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 CLP and the time of surgery. Results 1) No effect was found in this sample of the timing of surgery, the type of malformation or the care structure 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. 2) 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 (PSI, EPDS, IOFS). 3) 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 when 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 social withdrawal behaviours in the child and of the level of parental stress and depression appears useful, in order to adapt care to infant and parents alike. Trial Registration: ClinicalTrials.gov Identifier: NCT00993993. Registered 10/14/2009, https://clinicaltrials.gov/ct2/show/NCT00993993?term=grollemund&draw=2&rank=1.