The Construction of "Self" in Individuals With Congenital Facial Palsy.

Abstract

Congenital facial palsy is a rare medical condition that causes paralysis of the facial muscles, lack of facial expression, and an unusual appearance. Findings from developmental psychology suggest that the face plays a central role in the construction of self. Semi-structured interviews were conducted with 14 adults born with congenital facial palsy. Participant's constructions of self across the life span were explored and a grounded theory of this process was constructed. Theoretical sampling was conducted with two parents of children born with the condition. All participants reported "struggling to make connections," "experiencing invalidation," and "struggling to regulate affect," which lead to "constructing a defective sense of self." Alternatively, "making validating connections" facilitated the process of "constructing a validated sense of self." This study provides insight into the unique social and emotional challenges often experienced by those born with congenital facial palsy and highlights the need for early psychosocial intervention.