Children's experience of living with a craniofacial condition: Perspectives of children and parents

Abstract

This is the first study to examine the range of experiences of children living with a wide range of craniofacial anomalies (CFAs), from the perspectives of children and parents. We interviewed 26 young people and 28 parents about both stressors and positive aspects for young people of living with a CFA. Thematic analysis revealed four major stress-related themes (self-acceptance, responses of others, disabilities and impairments, and treatment). Positive themes included personal qualities and support. Psychological theories often applied to those with CFAs relate to attractiveness, stigma and teasing, but the present findings suggest that these are not as useful as the conceptualization of CFAs as chronic conditions which influence adaptive tasks. Implications for clinical practice are discussed.