Medical Care Experiences, Traumatic Stress Symptoms, and Resilience in Parents of Children With Craniofacial Conditions

Limited research has focused on parents' perspectives of their children's craniofacial treatment experiences, including the frequency of medical events, post-traumatic stress symptoms, and resilience. This cross-sectional study utilized an online survey and recruited participants from 3 pediatric hospitals, support organizations, and social media. Participants were mothers (N=45) of children (55.6% female; Mage=7.7±4.5) with cleft lip/palate (46.7%), craniosynostosis (46.7%), or other craniofacial diagnoses (6.6%). Most children had completed 5 to 10 surgeries (51.1%). Participants completed the Medical Experience Checklist, Child Stress Disorders Checklist (CSDC), the PTSD Checklist (PCL-5), the Craniofacial Experiences Questionnaire-Parent version (CFEQ-P), the Connor-Davidson Resiliency Scale-10 (CD-RISC-10), and open-ended questions about their child's medical care experiences. The most frequent medical events reported were ICU hospitalizations (71.1%), their child exhibiting fear of needles or blood draws (68.9%), and experiencing frightening sights or sounds in the hospital (68.9%). CSDC scores were lower than a sample with burns (Cohen d=-0.63), but higher than a sample with congenital heart conditions (Cohen d=0.32). Fourteen percent of mothers met lifetime criteria for PTSD, which is higher than the United States female lifetime prevalence rate of 8% to 12%. Parents reported significantly lower resilience than community norms (Cohen d=-0.79). While CFEQ-P stressors were similar to norms, positive CFEQ-P aspects were significantly higher than norms (Cohen d=-0.45). Content analysis of 1612 open-ended question responses yielded 20 codes in 3 categories: (1) concerns for the child's craniofacial care; (2) experiences with care providers; and (3) sources of support and distress. Additional research and clinical strategies are needed to reduce stressors and promote resilience across craniofacial care.