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Healthcare and psychosocial experiences of individuals with craniofacial microsomia: Patient and caregivers perspectives

Luquetti, Daniela; Brajcich, Michelle; Stock, Nicola Marie; Carrie, Heike; Johns, Alexis

Authors

Daniela Luquetti

Michelle Brajcich

Heike Carrie

Alexis Johns



Abstract

© 2018 Elsevier B.V. Objective: Craniofacial microsomia (CFM) is primarily characterized by underdevelopment of the ear and mandible, with several additional possible congenital anomalies. Despite the potential burden of care and impact of CFM on multiple domains of functioning, few studies have investigated patient and caregiver perspectives. The objective of this study was to explore the diagnostic, treatment-related, and early psychosocial experiences of families with CFM with the aim of optimizing future healthcare delivery. Methods: Forty-two caregivers and nine adults with CFM responded to an online mixed-methods survey. Descriptive statistics and qualitative methods were used for the analysis. Results: Survey respondents reported high rates of subspecialty evaluations, surgeries, and participation in therapies. Some participants reported receiving inaccurate or incomplete information about CFM and experienced confusion about etiology. Communication about CFM among family members included mostly positive messages. Self-awareness of facial differences began at a mean age of three years and teasing at mean age six, with 43% of individuals four years or older reporting teasing. Teasing often involved name-calling and frequent reactions were ignoring and negative emotional responses. Participants ranked “understanding diagnosis and treatment” as a top priority for future research and had the most questions about etiology and treatment guidance. Conclusions: The survey results on the healthcare and psychosocial experiences from birth through adulthood of individuals with CFM reinforce the need for ongoing psychological assessment and intervention. Healthcare provision could be improved through establishing diagnostic criteria and standardized treatment guidelines, as well as continued investigation of CFM etiology.

Journal Article Type Article
Publication Date Apr 1, 2018
Journal International Journal of Pediatric Otorhinolaryngology
Print ISSN 0165-5876
Electronic ISSN 1872-8464
Publisher Elsevier
Peer Reviewed Peer Reviewed
Volume 107
Pages 164-175
APA6 Citation Luquetti, D., Brajcich, M., Stock, N. M., Carrie, H., & Johns, A. (2018). Healthcare and psychosocial experiences of individuals with craniofacial microsomia: Patient and caregivers perspectives. International Journal of Pediatric Otorhinolaryngology, 107, 164-175. https://doi.org/10.1016/j.ijporl.2018.02.007
DOI https://doi.org/10.1016/j.ijporl.2018.02.007
Keywords healthcare, psychosocial, patient perspective, craniofacial microsomia, CFM, visible difference
Publisher URL https://doi.org/10.1016/j.ijporl.2018.02.007

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