未知的旅程－先天性心臟病嬰兒接受開心手術前母親之不確定感經驗

The Unknown Journey: Uncertain Experiences in Mothers of Infants With Congenital Heart Disease Before Undergoing Open Heart Surgery

簡莉文(Li-Wen CHIEN) ； 黃書健(Shu-Chien HUANG) ； 王主科(Jou-Kou WANG) ； 穆佩芬(Pei-Fan MU) ； 徐瑩媺(Ying-Mei SHU) ； 陳紀雯(Chi-Wen CHEN)

《護理雜誌》 70卷4期 (2023/08) Pp. 56-66

https://doi.org/10.6224/JN.202308_70(4).08

摘要

背景：多數複雜性先天性心臟病嬰兒需在出生一年內接受開心手術得以存活。對於孩子出生後要接受如此重大的手術，在手術前的每一步，母親都是艱難且小心翼翼的走著。目的：探討先天性心臟病嬰兒接受開心手術前，母親不確定感之經驗本質。方法：採用現象學研究法，以疾病不確定感理論架構為基礎，設計開放式訪談指引，共9位接受開心手術之先天性心臟病嬰兒母親，於手術結束後兩週內進行錄音訪談，並採用Colaizzi（1978）之資料處理步驟分析。結果：共包含五個主題，分別為（1）跌落谷底的無助；（2）出發上路—突發狀況排山倒海而來；（3）緊要關頭—盡人事聽天命；（4）疾病衍生的未知；以及（5）不確定感中的希望。結論／實務應用：對孩子接受開心手術的陌生及手術之高風險使母親產生疾病不確定感。醫護人員需建立整體性的資訊及情緒支持系統，以減輕母親之疾病不確定感。

關鍵字

先天性心臟病嬰兒 ； 開心手術 ； 母親 ； 不確定感 ； 質性研究

並列摘要

Background: 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. Purpose: This study was designed to explore the essence of the maternal uncertain experience prior to infants with CHD undergoing open-heart surgery. Methods: 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. Results: 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.

並列關鍵字

infants with congenital heart disease ； open heart surgery ； mother ； uncertainty ； qualitative research

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