Parent Observations of the Health Status of Infants With Clefts of the Lip: Results From Qualitative Interviews

Abstract

Objective:

To explore, using semistructured qualitative interviews, parent observations of their infant’s health as they relate to having a cleft lip or cleft lip and cleft palate (CL±P) and/or associated treatments.

Design:

Cross-sectional, qualitative study across 3 sites.

Setting:

Parents were recruited from 3 academic craniofacial centers. Most interviews were conducted over the telephone, audio-recorded, and transcribed.

Participants:

Forty-one parents (31 English-, 10 Spanish-speaking) were interviewed. Parents had a child ages 1 to 35 months diagnosed with CL±P.

Main Outcome Measure(s):

Twelve domains reflecting infant health and well-being, likely affected by a CL±P and/or associated treatments, were identified from clinical experience and literature review. Study investigators conducted semistructured interviews based on 12 identified domains. After transcripts of the interviews were reviewed, our multidisciplinary team selected illustrative quotes from each domain that reflected consistent observations made by parents.

Results:

Parents’ responses covered all 12 domains. Specifically, parents discussed the domain of feeding most frequently, followed by observations about sleep, development, comfort, breathing, and vocalization.

Conclusions:

We found that parents of infants with clefts provided caregiver-centered language useful in describing their daily observations. No additional domains of infant health were noted by parents. We will use these observations and language to develop and validate a parent-reported observation diary that can augment assessments of the impacts of interventions on infants who are receiving care for CL±P.