Saving Face: Patient Strategies to Reduce Stigma and Barriers to Effective Decision-Making Among Children With Cleft Lip.

ABSTRACT

Facial differences associated with cleft lips are often stigmatizing and can negatively impact psychosocial development and quality of life. However, little is known regarding patients' responses to societal expectations of appearance, or how these responses may impact utilization of revision surgery. Thus, patients with cleft lips at least 8 years of age (n = 31) were purposively sampled for semi-structured interviews. After verbatim transcription, first cycle coding proceeded with a semantic approach, which revealed patterns that warranted second cycle coding. The authors utilized an eclectic coding design to capture deeper meanings in thematic analysis. Additionally, survey data from a separate study were examined to evaluate participants' interest in improving appearance. Three major themes emerged, all of which reflected a desire to "save face" when interacting with society (1) Cultural Mantras, which included societal mottos that minimized the importance of appearance; (2) Toughening Up, wherein the participants downplayed the difficulty of having a cleft; and (3) Deflection, wherein the participants took pride in facial features unrelated to their clefts. Despite these efforts to "save face," 78% of participants expressed interest in improving their appearance in the separate survey data.In conclusion, children with cleft lips try to "save face" when interacting with society by depreciating appearance, making light of clefts, and focusing on non-cleft related features. Paradoxically, many desired improvements of their appearance in an earlier survey. Awareness of these coping strategies is critical, as they may negatively impact surgeon-patient communication and inhibit patients from expressing interest in revision surgery.