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

Abstract

Objective To 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. Design Prospective inclusion of a control group, which only received standard care, followed by an intervention group that also received early SCN follow-up. Setting The cleft lip and palate team at Oslo University Hospital, Norway. Participants Seventy families (69 mothers and 57 fathers) distributed into an intervention group (n = 32) and a control group (n = 38). Intervention SCNs 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 measures Parental Stress Index (PSI), Perceived Stress Scale (PSS-14), feeding questionnaire, survey of infant diets, weight percentiles. Results The 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. Conclusion Contextual 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.