Sjostrom-Strand Annica, Terp Karina
a Department of Nursing , Lund University , Lund , Sweden.
Compr Child Adolesc Nurs. 2019 Mar;42(1):10-23. doi: 10.1080/24694193.2017.1342104. Epub 2017 Aug 8.
The incidence of children born with congenital heart disease is 1%. Congenital heart disease is among the birth defects that lead to the longest hospital stays, and children with congenital heart disease often require frequent hospitalization and several heart operations, along with lifelong follow-up visits. This study aims to describe parents' experiences when their child has a heart defect and undergoes open heart surgery. A total of 10 parents were interviewed: 8 mothers and 2 fathers. The interviews took place 2 years after the heart surgery. The interviews were analyzed using a content analysis method, which resulted in 4 categories: maintaining belief, experiencing the surgery as a turning point, experiencing the pediatric intensive care unit with anxiety and fear, and perception of support. When parents face their child having a congenital heart defect and plan heart surgery, the whole family is living through a stressful time and has to handle many difficult situations. Parents need support from the health care team.
先天性心脏病患儿的发病率为1%。先天性心脏病是导致住院时间最长的出生缺陷之一，患有先天性心脏病的儿童通常需要频繁住院和多次心脏手术，以及终身随访。本研究旨在描述孩子患有心脏缺陷并接受心脏直视手术时家长的经历。总共采访了10位家长：8位母亲和2位父亲。访谈在心脏手术后2年进行。采用内容分析法对访谈进行分析，结果分为4类：保持信念、将手术视为转折点、在儿科重症监护室经历焦虑和恐惧、对支持的感知。当家长面对孩子患有先天性心脏缺陷并计划进行心脏手术时，整个家庭都处于压力时期，必须应对许多困难情况。家长需要来自医疗团队的支持。
