In their own words: Caregiver and patient perspectives on stressors, resources, and recommendations in craniofacial microsomia care

Johns, Alexis L.; Luquetti, Daniela V.; Brajcich, Michelle R.; Aspinall, C; Heike, Carrie L.; Stock, Nicola Marie

Abstract

Copyright © 2018 by Mutaz B. Habal, MD 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 ¼ 51) included caregivers (n ¼ 42; 90% mothers) and adults with CFM (n ¼ 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.

Citation

Johns, A. L., Luquetti, D. V., Brajcich, M. R., Aspinall, C., Heike, C. L., & Stock, N. M. (2018). In their own words: Caregiver and patient perspectives on stressors, resources, and recommendations in craniofacial microsomia care. Journal of Craniofacial Surgery, 29(8), 2198-2205. https://doi.org/10.1097/SCS.0000000000004867

• Journal Article Type: Article
• Acceptance Date: Jul 3, 2018
• Online Publication Date: Oct 16, 2018
• Publication Date: Oct 16, 2018
• Deposit Date: Jul 11, 2018
• Publicly Available Date: Oct 21, 2019
• Journal: Journal of Craniofacial Surgery
• Print ISSN: 1049-2275
• Electronic ISSN: 1536-3732
• Publisher: Lippincott, Williams & Wilkins
• Peer Reviewed: Peer Reviewed
• Volume: 29
• Issue: 8
• Pages: 2198-2205
• DOI: https://doi.org/10.1097/SCS.0000000000004867
• Keywords: craniofacial microsomia, family stressors, family resources, qualitative analysis, visible difference
• Public URL: https://uwe-repository.worktribe.com/output/864909
• Publisher URL: https://journals.lww.com/jcraniofacialsurgery/Abstract/2018/11000/In_Their_Own_Words___Caregiver_and_Patient.44.aspx
• Additional Information: Additional Information : This is the author's accepted manuscript. The final published version is available here: http://dx.doi.org/10.1097/SCS.0000000000004867