Survey of Parent Experiences in Prenatal Visits for Infants With Cleft Lip and Palate

Cleft Palate Craniofac J. 2017 Nov;54(6):668-673. doi: 10.1597/16-036. Epub 2016 Sep 15.

Abstract

Objective: The purpose of this study was to identify the factors that influence the parent's choice of cleft team/surgeon.

Design: A 10-question survey was used to elucidate factors that influenced parents in choosing their cleft surgeon. No identifiers of the origin of the study were used to improve parent objectivity.

Setting: The setting for this study was an online survey.

Participants: Participants in this study were the parents of children who were born with cleft lip and/or palate.

Interventions: Parents were contacted anonymously via national, established social media websites that were independently run by the parents themselves.

Main outcome measures: The main outcome measures were information regarding choice of cleft team/surgeon, source of patient referrals, and use of online media in decision making.

Results: A total of 112 responses were received. Of the parents, 77% sought prenatal evaluation with at least one cleft surgeon. Maternal-fetal medicine specialists were the most frequent (42%) referral source, followed by primary obstetricians (14%) and pediatricians (12%). The surgeon/cleft team's experience level and overall personality were ranked as the most important, whereas the least important was distance traveled. Of the parents, 95% used the Internet or social media for research prior to their prenatal visit; 96% of the parents found the prenatal visit helpful, and the most useful topics discussed were treatments (surgical, nonsurgical) and feeding techniques.

Conclusion: This study identifies factors used to choose a cleft team/surgeon. Parents are more concerned with the experience level, reputation, and environment of the cleft team/surgeon than the distance traveled to get to the center.

Keywords: cleft lip; cleft palate; prenatal visit.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Cleft Lip / surgery*
  • Cleft Palate / surgery*
  • Decision Making*
  • Female
  • Humans
  • Infant, Newborn
  • Male
  • Parents / psychology*
  • Pregnancy
  • Prenatal Care
  • Surveys and Questionnaires