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What information do parents of newborns with cleft lip, palate, or both want to know?

J L Young1, M O'Riordan, J A Goldstein

  • 1Department of Pediatrics, Case Western Reserve University School of Medicine, University Hospitals of Cleveland, Ohio, USA.

The Cleft Palate-Craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association
|February 24, 2001
PubMed

Insights

Parents of newborns with cleft lip and palate (CL/P) need critical information on feeding and illness identification. Healthcare providers often fail to adequately address these essential parental concerns during the immediate newborn period.

Area of Science:

  • Pediatric Medicine
  • Neonatal Care
  • Genetics and Developmental Biology

Background:

  • Birth of a baby with cleft lip and palate (CL/P) causes significant parental anxiety and trauma.
  • Parents often lack crucial information due to inadequate education from healthcare professionals.

Purpose of the Study:

  • To identify critical information needs of parents with newborns diagnosed with CL/P.
  • To assess parental perceptions of healthcare providers during initial encounters.

Main Methods:

  • Retrospective survey of biologic parents with children aged 6 years or younger diagnosed with isolated CL/P.
  • Questionnaire assessed recall of discussions on diagnosis, prognosis, management, home care, and psychosocial issues.
  • Parents ranked the criticality of specific issues discussed by healthcare providers.

Main Results:

  • Parents prioritized information on infant feeding and recognizing signs of illness.
  • 95% desired a demonstration of normal infant examination findings.
  • 87% wanted reassurance that CL/P was not their fault; clear terminology and pain assurance were also vital.
  • Many parents reported these critical issues were not addressed by healthcare providers.

Conclusions:

  • Parents of newborns with CL/P require fundamental information, particularly concerning feeding and illness recognition.
  • Current practices indicate healthcare providers are not sufficiently addressing these essential parental needs in the immediate postpartum period.
Abstract

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