Understanding the Psychological Impact of Medical Care Experiences on Adults With Craniofacial Conditions: A Pilot Survey of Traumatic Stress Symptoms and Resilience

Craniofacial conditions often require extensive medical care and surgeries throughout childhood and adolescence. However, there is limited research investigating the psychological effects of craniofacial care, including risks for medical traumatic stress. This cross-sectional study investigated the medical care experiences of adults with craniofacial conditions, including the frequency of potentially traumatic medical events, post-traumatic stress disorder (PTSD) symptoms, and resilience. Participants (N=34; mean age 35.2 ± 12.2 y; 71% female) were recruited at 3 US pediatric hospitals and craniofacial support organizations. Participants completed the PTSD Checklist (PCL-5), Connor-Davidson Resilience Scale, the Craniofacial Experiences Questionnaire, and open-ended questions about their medical care experiences. Most participants reported experiencing potentially traumatic medical experiences, such as prolonged and/or painful dental (79%) and medical treatments (73%) and hospitalization in the intensive care unit (70%). On the PCL-5, 21% met the criteria for PTSD, which is similar to other medical populations and higher than the 6% rate of PTSD in the general US population. Participants reported both stressors and positive aspects related to living with a craniofacial condition; however, resilience scores were lower relative to a US community sample. Qualitative analysis of open-ended responses identified themes including interactions with providers, medical treatment experiences, and psychosocial impacts. Adults with craniofacial conditions appear to be vulnerable to post-traumatic stress symptoms related to their medical care experiences, and report reduced resilience relative to community samples. Implications for clinical care and research include the integration of trauma-informed care approaches and strategies to support coping and resilience across the lifespan.