The need to belong: Subjective experiences of living with craniofacial conditions and undergoing appearance-altering surgery.

Abstract

The purpose of this study was to better understand how individuals with craniofacial conditions experience living with visible differences and make sense of appearance-altering surgery. We conducted semi-structured qualitative interviews with 11 adults with Goldenhar or Crouzon syndrome. Interviews were analysed using a hermeneutic-phenomenological approach to thematic analysis. Our analysis revealed the following overarching theme, To see myself as other people see me, which encompassed three main themes: a) Striving to fit in, b) Altering the way I look and c) Support from family and friends. The participants sense of their own appearance seemed to be connected to how they perceived others to evaluate their appearance. All had experienced negative reactions from others. They experienced themselves as different and had a desire to belong. All participants had undergone appearance-altering surgery, hoping that by changing appearance, they would reduce negative reactions and feel more connected to and accepted by other people. The process of undergoing appearance-changing surgery was experienced as challenging, and participants wished for a dialogue with surgeons which included psychological and emotional aspects of changing appearance. A better understanding of how to strengthen positive identity processes and feelings of belongingness should be a key focus of future research.