Pediatric Nursing Department, Faculty of Health Sciences, Artvin Çoruh University, Artvin, Turkey.
Department of Nursing, Faculty of Health Sciences, Başkent University, Ankara, Turkey.
Congenit Anom (Kyoto). 2021 Mar;61(2):38-45. doi: 10.1111/cga.12398. Epub 2020 Nov 5.
This study aimed to determine the difficulties that the mothers of infants with a cleft lip and/or palate (CL/P) go through, the problems they encounter in this process, and how they perceive the support of healthcare professionals, families, and friends. The study used a phenomenological approach from qualitative research methods. The study sample included 18 mothers of 0 to 3-month-old infants with CL/P. The data were collected using socio-demographic information form and semi-structured interview form. The data obtained from the interviews were evaluated using content and thematic analysis approaches. On the basis of the interviews conducted with mothers of infants with CL/P, the following themes emerged: (a) "unexpected event: having an infant with CL/P," (b) "using social media," (c) "stigma," and (d) "uncertainty of long-term treatment." In this study, it was determined that mothers experienced shock, confusion, sadness, and disappointment in this process; therefore, they used social media to seek support from the families as well as conducted research on the disease that involved a lot of uncertainty due to long-term treatments. The present study can help healthcare professionals, who play a role in the care and treatment of infants with CL/P, to understand and know what mothers need in the preoperative period.
本研究旨在确定唇腭裂（CL/P）婴儿的母亲所经历的困难、她们在这个过程中遇到的问题，以及她们如何感知医疗保健专业人员、家庭和朋友的支持。本研究采用了从定性研究方法中得出的现象学方法。研究样本包括 18 名 0 至 3 个月大的唇腭裂婴儿的母亲。使用社会人口统计学信息表和半结构化访谈表收集数据。使用内容分析和主题分析方法评估从访谈中获得的数据。根据对唇腭裂婴儿母亲的访谈，得出以下主题：(a)“意外事件：有一个唇腭裂婴儿”，(b)“使用社交媒体”，(c)“耻辱感”和(d)“长期治疗的不确定性”。在本研究中，确定母亲在这个过程中经历了震惊、困惑、悲伤和失望；因此，她们使用社交媒体寻求家庭的支持，并对涉及长期治疗的疾病进行了大量不确定的研究。本研究可以帮助在唇腭裂婴儿的护理和治疗中发挥作用的医疗保健专业人员了解和知道母亲在术前阶段的需求。
