Adults born with a cleft lip and/or palate (CL/P) may experience appearance-related distress and seek surgery to alter the appearance of their lip and/or nose. Little is known about the psychological experience of this decision-making process, which is often their first opportunity to make surgical choices independently. This study aimed to explore the experiences of adults with CL/P making decisions about lip and/or nose surgery to alter their appearance.
Design
A qualitative study was conducted.
Setting: A regional cleft service in the United Kingdom.
Participants: A total of 12 adults (9 women, 3 men), ranging from 20 to 61 years, had either decided to pursue surgery, were in the process of deciding to pursue surgery, or had lip and/or nose surgery in the previous 6 months to alter their appearance.
Main Outcome Measures: Semi-structured interviews were completed with all participants either via video (N = 10) or telephone (N = 2), along with a demographic questionnaire to provide contextual information for findings.
Results
Three themes were created during inductive-deductive thematic analysis: legacy of adversity (implicit and explicit shaping how participants viewed themselves), conflict driven by fear and emotional investment (related to uncertain outcomes, dual experiences, and identity erasure), and taking back control of decisions (pragmatically and by taking ownership, which was not without challenge).
Conclusions
For adults considering lip or nose surgery, psychological support may be helpful for patients to process previous aversive experiences and/or manage fear or uncertainty around decision-making.
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