Decision-making process to undergo surgery among adolescent patients with cleft lip and/or palate

As patients with cleft lip and/or palate grow older, the main decision-making process for treatment is likely to shift from a parent-centered to a patient-centered process. However, many adolescent patients have difficulty in treatment decision-making. This study aimed to clarify the decision-making process regarding undergoing surgery among adolescent patients with cleft lip and/or palate.

Participants were adolescent patients with cleft lip and/or palate aged 14-18 years who were admitted to a hospital in Japan for surgery. Fourteen patients (six boys, eight girls) and their parents agreed to participate in this study. Data were collected in face-to-face semi-structured interviews. Data were analyzed qualitatively with inductive content analysis.

Fifteen categories were classified into three themes for adolescent patients' decision-making processes regarding undergoing surgery. The three themes were: (a) a doctor's recommendation for surgery, (b) psychological conflict about surgery, and (c) a final decision about surgery.

This study's findings suggest that adolescent patients with cleft lip and/or palate were not adequately involved in the decision-making process before undergoing surgery. Medical staff need to explain other treatment options, the risks and benefits of surgery with materials and methods that adolescent patients can understand as part of "a doctor's recommendation for surgery." Medical staff and parents need to encourage adolescent patients to communicate their preferences and values to reduce patients' "psychological conflict about surgery" and adolescent patients' intentions should be considered in "a final decision about surgery."