College of Nursing, The Catholic University of Korea, Seoul 06591, Korea.
College of Nursing, Research Institute of Nursing Science, Ajou University, Suwon 16499, Korea.
Int J Environ Res Public Health. 2020 Sep 29;17(19):7134. doi: 10.3390/ijerph17197134.
Mothers of children with complex congenital heart disease face unique challenges and emotional burdens, while their children go through physical and psychological difficulties during disease progression. In this study, we aimed to explore the in-depth experiences and feelings of mothers facing the prognosis of their children with complex congenital heart disease that was surgically corrected. This is a descriptive qualitative study. We conducted semi-structured, face-to-face interviews with 12 mothers of children with complex congenital heart disease at a tertiary hospital in Seoul, Korea. The interview data were analyzed by content analysis. Participants were mothers aged between 40-58 years whose children were diagnosed with complex congenital heart disease which was surgically corrected. Based on the content analysis, the mothers' experiences and feelings were categorized as immense suffering and adapting to a new life. Under the main categories, the concepts included feeling of abandonment, anxiety with potentially losing their children, having hope, seeking reassurance, being encouraged, and trying to embrace the situation. Mothers who cared for their children with complex congenital heart disease expressed emotions that changed sequentially alongside physical and psychosocial changes in the children. The results of this study are valuable for understanding the experiences and emotions of mothers facing the prognosis of their children with complex congenital heart disease in order to aid in the development of programs that support these mothers.
患有复杂先天性心脏病的儿童的母亲面临着独特的挑战和情感负担，而他们的孩子在疾病进展过程中则经历着身体和心理上的困难。在这项研究中，我们旨在探讨母亲们面对经过手术矫正的复杂先天性心脏病儿童预后的深入体验和感受。这是一项描述性定性研究。我们在韩国首尔的一家三级医院对 12 名患有复杂先天性心脏病并接受过手术矫正的儿童的母亲进行了半结构化的面对面访谈。采用内容分析法对访谈数据进行分析。参与者为年龄在 40-58 岁之间的母亲，其孩子被诊断为复杂先天性心脏病并接受了手术矫正。根据内容分析，母亲们的经历和感受可分为巨大的痛苦和适应新生活。在主要类别下，概念包括被遗弃感、对孩子可能失去的焦虑感、抱有希望、寻求安慰、受到鼓励以及努力接受现状。照顾患有复杂先天性心脏病的孩子的母亲们表达的情绪随着孩子身体和社会心理的变化而发生顺序变化。这项研究的结果对于理解面临复杂先天性心脏病儿童预后的母亲们的经历和情绪非常有价值，有助于制定支持这些母亲的项目。
