Chien Li-Wen, Huang Shu-Chien, Wang Jou-Kou, Mu Pei-Fan, Shu Ying-Mei, Chen Chi-Wen
MSN, RN, Department of Nursing, National Taiwan University Children's Hospital, Taiwan, ROC.
PhD, MD, Department of Surgery, National Taiwan University Hospital, Taiwan, ROC.
Hu Li Za Zhi. 2023 Aug;70(4):56-66. doi: 10.6224/JN.202308_70(4).08.
Most children with complex congenital heart disease (CHD) require open-heart surgery within one year of birth to survive. Thus, new mothers of infants with CHD are faced with making unexpected and difficult decisions.
This study was designed to explore the essence of the maternal uncertain experience prior to infants with CHD undergoing open-heart surgery.
In this study, a phenomenological approach was used and data were collected using open-ended interview guidelines structured around the Uncertainty in Illness Theory. Nine mothers of infants with CHD who had received open-heart surgery were interviewed in a hospital interview room within two weeks the operation. Colaizzi's (1978) data processing procedure was applied in the post-interview analysis.
Five themes emerged: (1) Hit bottom and felt helpless; (2) Hit the road - An overwhelming sense of emergency; (3) The crunch - Do your best to accept destiny (4) Disease brought the unknown; (5) Hope in uncertainty.
CONCLUSIONS / IMPLICATIONS FOR PRACTICE: The high-risk nature of and their unfamiliarity with the surgery made the participants experience illness uncertainty. The medical system should develop more-structured CHD information and provide emotional support in a timely manner to alleviate illness uncertainty in mothers of infants with CHD.
大多数患有复杂先天性心脏病（CHD）的儿童需要在出生后一年内接受心脏直视手术才能存活。因此，患有CHD婴儿的新妈妈面临着做出意想不到且艰难的决定。
本研究旨在探讨患有CHD的婴儿接受心脏直视手术之前母亲不确定经历的本质。
在本研究中，采用现象学方法，并使用围绕疾病不确定性理论构建的开放式访谈指南收集数据。九名患有CHD且已接受心脏直视手术的婴儿的母亲在手术后两周内在医院访谈室接受了访谈。访谈后分析采用了科莱齐（1978）的数据处理程序。
出现了五个主题：（1）陷入谷底并感到无助；（2）踏上征程——强烈的紧迫感；（3）关键时刻——尽力接受命运；（4）疾病带来未知；（5）不确定性中的希望。
结论/对实践的启示：手术的高风险性以及她们对手术的不熟悉，使得参与者体验到疾病的不确定性。医疗系统应制定更有条理的CHD信息，并及时提供情感支持，以减轻患有CHD婴儿母亲的疾病不确定性。
