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

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.

Decision-Making in Cleft-Related Surgery: A Qualitative Analysis of Patients and Caregivers.

OBJECTIVE: Preference-sensitive surgical decisions merit shared decision-making, as decision engagement can reduce decisional conflict and regret. Elective cleft-related procedures are often preference sensitive, and therefore, we sought to better understand decision-making in this population. DESIGN: Semistructured interviews were conducted to elicit qualitative data. A hierarchical codebook was developed through an iterative process in preparation for thematic analysis. Thematic analysis was performed to examine differences between patients and caregivers. SETTING: Multidisciplinary cleft clinic at a tertiary care center. PARTICIPANTS: Patients with cleft lip aged 8 and older (n = 31) and their caregivers (n = 31) were purposively sampled. Inability to converse in English, intellectual disability, or syndromic diagnoses resulted in exclusion. MAIN OUTCOME MEASURES: Preferences surrounding surgical decision-making identified during thematic analysis. RESULTS: Mean patient age was 12.7 (standard deviation: 3.1). Most had unilateral cleft lip and palate (43.8%). Three themes emerged: Insufficient Understanding of Facial Difference and Treatment, Diversity of Surgical Indications, and Barriers to Patient Autonomy. Almost half of caregivers believed their children understood their clefts, but most of these children failed to provide information about their cleft. Although many patients and caregivers acknowledged that surgery addressed function and/or appearance, patients and caregivers exhibited differences regarding the necessity of surgery. Furthermore, a large proportion of patients believed their opinions mattered in decisions, but less than half of caregivers agreed. CONCLUSIONS: Patients with clefts desire to participate in surgical decisions but have limited understanding of their facial difference and surgical indications. Cleft surgeons must educate patients and facilitate shared decision-making.