Early Familial Experiences With Microtia: Psychosocial Implications for Pediatric Providers

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Abstract

This study focuses on early experiences of families with a child with microtia to better inform their ongoing care by pediatric providers. Parents and children (n = 62; mean age of 6.9 ± 3.9 years) with isolated microtia participated in semistructured interviews in Spanish (66.1%) or English (33.9%). Qualitative analysis of responses used open coding to identify themes. Parents reported stressful informing experiences of the diagnosis with multiple negative emotions. Parents and children generally reported not understanding microtia etiology, while some families identified medical, religious, and folk explanations. Parental coping included learning about surgeries, normalization, perspective taking, and support from family, providers, religion, and others with microtia. Family communication centered on surgery and reassurance. Pediatricians of children with microtia need to understand families’ formative psychosocial experiences to better promote positive family adjustment through clarifying misinformation, educating families about available treatment options, modeling acceptance, psychosocial screening, and providing resources.

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