Abstract
Cleft lip and/or palate is a craniofacial anomaly, and the parents of infant patients with cleft lip and/or palate must make decisions on the treatment of their children. As the patients grow older, the decision-making process tends to transition from a parent-centered to a patient-centered process. However, making this change tends to be a difficult process. This study clarified parents’ decision-making about their adolescent children’s surgery to correct cleft lip and/or palate.
The study’s participants were 12 parents （one male; 11 females） who were caring for adolescent patients admitted to a hospital for cleft lip repair. The participants’ ages ranged from 40 to 60 years old. The adolescent patients’ ages ranged between 15 and 18 years old （six males; six females）. Data were collected in face-to-face semi-structured interviews and qualitatively analyzed using inductive content analysis.
There were three core categories: ［parents’ emotional reactions］, ［their children’s emotions］, and ［parent-child relationship］. When the adolescent patients made the decision to undergo surgery, the parents had ［parents’ emotional reactions］ about the cleft lip and/or palate condition, the surgery, and the adolescent. The parents tried to understand ［their children’s emotions］ from the children’s perspectives, and the parents aligned their emotions to those of their children by empathizing so that they and their children could undergo the surgery in the ［parent-child relationship］. There were seven categories of ［parents’ emotional reactions］, such as “postoperative anxiety” and “confusion about the child’s true feelings.” Four categories of ［their children’s emotions］ were extracted from the data, such as “their children’s postoperative anxiety.” Regarding the ［parent-child relationship］, there were five categories, such as “adjustment of the parents’ intention to that of their child” and “taking on the role of spokesperson for their child.”
This study’s results suggested that parents caring for adolescent patients adjusted their personal emotions and their children’s emotions through their relationships with them so that the parents and their children could undergo the surgery and gradually transition to a patient-centered decision-making process regarding surgery. However, healthcare staff should provide additional support to help reduce parents’ sense of anxiety because this study’s parents reported personal postoperative anxiety and their children’s postoperative anxiety. Parents experienced an adjustment of the intentions to undergo surgery between them and their children and they took on the role of spokesperson for their children. However, parents stated that they felt confused about their children’s true feelings about the surgery. Healthcare staff need to determine whether intentions to undergo surgery are sufficiently considered by parents and their children.
