Caregiver Experiences of Feeding Instruction for Infants Born With Cleft Lip and/or Palate

Abstract

Purpose: The purpose of this pilot study was to attempt to describe how feeding education was provided to a group of caregivers of infants with cleft lip and/or palate and how they viewed the feeding experience. Method: Participants (n=5) were recruited from two Facebook support groups, Cleft Lip and Palate Support Group and Cleft Mom Support. The data were collected using Qualtrics™ software. The questionnaire consisted of eight demographic questions and seven topic-specific questions. The demographic questions included the exclusion and inclusion criteria. The participants of this study were required to be an English-speaking parent or a caregiver of a child under one year of age with non-syndromic cleft lip and/or palate. While six participants qualified, only five continued on to complete the topic-specific questions. Results: Four of five participants reported receiving feeding education from a speech-language pathologist, and all reported being provided follow-up care in regard to feeding. Three out of five participants mentioned the use of specific bottles in regard to the feeding education they were provided. Three out of five participants also described using Facebook support groups to acquire additional feeding information. Conclusion: This study helps to clarify the importance of speech-language pathologists’ role in cranio-facial teams as providers of feeding therapy to infants born with cleft lip and/or palate.