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In Their Own Words

Caregiver and Patient Perspectives on Stressors, Resources, and Recommendations in Craniofacial Microsomia Care

Johns, Alexis L., PhD, ABPP*; Luquetti, Daniela V., MD, PhD†,‡,§; Brajcich, Michelle R., BS||; Heike, Carrie L., MD, MS†,‡,§; Stock, Nicola M., MSc, PhD

doi: 10.1097/SCS.0000000000004867
Clinical Studies

This study describes stressors, resources, and recommendations related to craniofacial microsomia (CFM) care from the perspective of caregivers of children with CFM and adults with CFM to inform improved quality of healthcare delivery. A mixed method design was used with fixed-response and open-ended questions from an online survey in English. The survey included demographics, CFM phenotypic information, and items about CFM-related experiences across settings. Themes were identified by qualitative analysis of responses to open-ended questions. Respondents (n = 51) included caregivers (n = 42; 90% mothers) and adults with CFM (n = 9; 78% female), who had a mean age of 45 ± 6 years. Most children were male (71%) with an average age of 7 ± 4 years. Respondents were primarily white (80%), non-Hispanic (89%), from the United States (82%), had a college degree (80%), and had private health insurance (80%). Reflecting the high rate of microtia (84%) in the sample, themes centered on the impact of hearing difficulties across settings with related language concerns. Negative social experiences were frequently described and school needs outlined. Multiple medical stressors were identified and corresponding suggestions included: providers need to be better informed about CFM, treatment coordination among specialists, and preference for a family-centered approach with reassurance, empathy, and clear communication. Advice offered to others with CFM included positive coping strategies. Overall, caregivers’ and patients’ responses reflected the complexity of CFM treatment. Incorporating these perspectives into routine CFM care has the potential to reduce family distress while improving their healthcare.

*Division of Plastic and Maxillofacial Surgery, Children's Hospital Los Angeles, Los Angeles, CA

Craniofacial Center, Seattle Children's Hospital

Seattle Children's Research Institute

§Department of Pediatrics, University of Washington

||School of Medicine, University of Washington, Seattle, WA

Centre for Appearance Research, University of the West of England, Bristol, UK.

Address correspondence and reprint requests to Alexis L. Johns, PhD, ABPP, Division of Plastic and Maxillofacial Surgery, Children's Hospital Los Angeles, 4650 Sunset Blvd, MS#96, Los Angeles, CA 90027; E-mail: ajohns@chla.usc.edu

Received 31 January, 2018

Accepted 3 July, 2018

Portions of this paper were in a poster presentation at the Appearance Matters 8 Conference, June 2018, Bath, UK.

Research reported in this paper was supported by the Center for Clinical and Translational Research at Seattle Children's Research Institute, grant UL1 TR000423 (Redcap). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

The authors report no conflicts of interest.

© 2018 by Mutaz B. Habal, MD.