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

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 ( = .007,  = .018). Infants in the intervention group used pacifiers less frequently than in the control group (55.2% vs. 81.1%,  = .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.