Experience of Children with a Cleft Lip and/or Palate Who Have Undergone Multiple Surgeries

Abstract

【Purpose】 To identify the experiences of treatment among children with a cleft lip or palate who have undergone multiple surgeries, and to use the results as basic data to improve the treatment environment of patients and their families.
【Subjects】 The study involved 12 subjects, 8 junior and 4 senior high school students. Seven and 5 were male and female, respectively, and 10 and 2 had a cleft palate and lip, respectively. The total number of surgeries ranged from 3 to 7.
【Methods】 Semi-structured interviews were conducted to investigate the experiences of children who have undergone multiple surgeries, and their statements were analyzed using a qualitative and inductive approach, while defining “experiences” as impressive events and mental and physical conditions when undergoing surgery.
【Results】 The experiences of the children were classified into 8 categories 《the continued presence of anxiety and a fear of surgery》 《expectations of recovery》 《postoperative pain and distress due to various limitations》 《management by medical professionals and support from others encouraged the children to undergo surgery》 《considerations for the mother feeling remorse》 《difficulty in dealing with bullying and teasing》 《not regarding the congenital deformity as special》 and 《being aware of the inevitable necessity of further surgeries.》
【Discussion】 Healthcare providers must consider the effects of the initial experience of surgery on future events in children to provide detailed explanations and care, suggesting the need to effectively use preparation and distraction techniques. Also, the children received the impression that they had undergone unwanted surgery as they discovered that their mothers had a sense of guilt, suggesting the importance of providing support to help mothers accept their child's disease soon after children receive their diagnosis. It is also important to provide support to help children increase their self-care ability and describe their conditions in their own words, in order to cope with bullying.
【Conclusions】 Healthcare providers must understand the characteristics of children with a cleft lip or palate requiring multiple surgeries, and improve the treatment environment to help them develop positive attitudes toward surgery.