Parental Stress, Infant Feeding and Well-being in Families Affected by Cleft Lip and/or Cleft Palate: The Impact of Early Follow-up.

ObjectiveTo document the impact of early follow-up by specialized cleft nurses (SCNs) provided to families affected by cleft lip and/or palate (CL/P) and the status of parental stress, infant feeding and well-being.DesignProspective inclusion of a control group, which only received standard care, followed by an intervention group that also received early SCN follow-up.SettingThe cleft lip and palate team at Oslo University Hospital, Norway.ParticipantsSeventy families (69 mothers and 57 fathers) distributed into an intervention group (n = 32) and a control group (n = 38).InterventionSCNs provided a consultation at the maternity ward and a follow-up conversation by phone or face-to-face at scheduled times for six months.Outcome measuresParental Stress Index (PSI), Perceived Stress Scale (PSS-14), feeding questionnaire, survey of infant diets, weight percentiles.ResultsThe mothers reported higher stress scores than the fathers, but in the control group only in the PSI parent domain at T2 and T3 (P = .007, P = .018). Infants in the intervention group used pacifiers less frequently than in the control group (55.2% vs. 81.1%, P = .023). Otherwise, no significant differences were found between the groups. Overall, the infants received less breast milk than norms.ConclusionContextual strategies for early follow-up of families affected by clefts need to be developed, with an emphasis on involving fathers and those parents reporting elevated stress and/or feeding difficulties. There is a need for diagnosis-specific guidelines about the use of pacifiers as well as collaboration between the health professionals involved to increase breastmilk feeding.