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

Abstract

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.

Development of an Outcome Measure of Observable Signs of Health and Well-Being in Infants With Orofacial Clefts

“…Infants described as having feeding challenges gagged, turned away from the bottle, and often required prolonged feed times. For a large number of infants, use of presurgical orthopedic devices improved feeding efficiency while for another group of infants it disrupted feeding (Rosenberg et al, 2019). Breathing issues described as long pauses in breathing, gasping, loud breathing, and snoring were typically described in relationship to initial placement of presurgical molding interventions, problems with feeding, and sleep position.…”

“…Detailed results of interviews are found in Rosenberg et al, 2019. Feeding was discussed in 581 interview excerpts, sleep in 233, development in 222, comfort in 212, breathing issues in 201, vocalization in 198, disposition in 154, hearing in 85, gastroesophageal reflux in 58, skin issues in 37, and communication in 31.…”

“…Detailed information about the qualitative interview results has been previously published (Rosenberg et al, 2019). Seven research team members completed the interviews and all but one of the semi-structured caregiver interviews were conducted by telephone.…”

“…We reviewed 2095 excerpts from the qualitative interviews (Rosenberg et al, 2019) and identified 700 signs that were observed by caregivers. Feeding comprised approximately one-third of the signs identified by caregivers (see Table 4).…”

ACPA Annual Meeting 2021 Abstracts

“…Lakshmi Kollara (1), Jamie Perry (2), Richard Kirschner (3), D. Gregory Bates (3),Mark Smith (3), Adriane Baylis (3) (1) University of Central Florida, Orlando, FL, (2) East Carolina University, Greenville, NC, (3) Nationwide Children's Hospital, Columbus, OH Background/Purpose: Dysmorphology in velopharyngeal structures has been shown to have significant negative implications on speech among individuals with 22q11.2 deletion syndrome (22q). Velopharyngeal dysfunction associated with 22q has a complex etiology.…”