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Int J Pediatr Otorhinolaryngol. 2018 Apr;107:164-175. doi: 10.1016/j.ijporl.2018.02.007. Epub 2018 Feb 7.

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

Author information

1
Seattle Children's Hospital, Craniofacial Center, Seattle Children's Research Institute, University of Washington, Department of Pediatrics, 1900 Ninth Avenue, Mailstop C9S-5, Seattle, WA, 98101, USA. Electronic address: daniela.luquetti@seattlechildrens.org.
2
University of Washington, School of Medicine, 1959 NE Pacific St., Seattle, WA, 98195, USA. Electronic address: mbrajcic@uw.edu.
3
Centre for Appearance Research, University of the West of England, Frenchay Campus, Coldharbour Lane, Bristol, BS16 1QY, UK. Electronic address: Nicola2.Stock@uwe.ac.uk.
4
Seattle Children's Hospital, Craniofacial Center, Seattle Children's Research Institute, University of Washington, Department of Pediatrics, 1900 Ninth Avenue, Mailstop C9S-5, Seattle, WA, 98101, USA. Electronic address: carrie.heike@seattlechildrens.org.
5
Division of Plastic and Maxillofacial Surgery, Children's Hospital Los Angeles, 4650 Sunset Blvd., Mailstop #96, Los Angeles, CA, 90027, USA. Electronic address: ajohns@chla.usc.edu.

Abstract

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.

KEYWORDS:

Craniofacial microsomia; Hemifacial microsomia; Microtia; Oculo-auriculo-vertebral spectrum; Psychosocial experience; Teasing

PMID:
29501301
PMCID:
PMC5839339
DOI:
10.1016/j.ijporl.2018.02.007
[Indexed for MEDLINE]
Free PMC Article

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