Reid Annette, Gaskin Kerry
Children's ward, Gloucestershire Hospitals NHS Foundation Trust, Gloucestershire, England.
Advanced clinical practice, Department of Nursing and Midwifery, Institute of Health and Society, University of Worcester, Worcester, England.
Nurs Child Young People. 2018 Nov 8;30(6):19-25. doi: 10.7748/ncyp.2018.e1078. Epub 2018 Oct 22.
The time point at which parents receive a diagnosis of congenital heart disease (CHD) has changed over the years due in part to advances in fetal ultrasound. However, CHD remains undiscovered until after birth in some cases. The psychological effect of time of diagnosis on parents' experiences has not been well researched.
To explore parents' experiences at the time of diagnosis of complex CHD and to compare if experiences differ when receiving an antenatal versus postnatal diagnosis.
Descriptive and thematic analysis of primary mixed qualitative and quantitative data, collected in 2012-2013, from an online survey of parents ( n =22) whose infants had undergone stage one surgery for a functionally univentricular heart.
Four themes emerged: parents' understanding of the condition at the time of diagnosis; parents' emotions at the time of diagnosis; sources of support at the time of diagnosis; and additional sources of information after the diagnosis.
There are implications for practice in terms of who provides the diagnosis and, more importantly, how well it is explained. Professionals need to assess parents' emotional status, information needs and level of understanding irrespective of time of diagnosis, so that support is individualised, sensitive and time appropriate.
多年来，由于胎儿超声技术的进步，父母得知先天性心脏病（CHD）诊断结果的时间点有所变化。然而，在某些情况下，先天性心脏病在出生后才被发现。诊断时间对父母体验的心理影响尚未得到充分研究。
探讨父母在复杂先天性心脏病诊断时的体验，并比较产前诊断与产后诊断时的体验是否存在差异。
对2012 - 2013年收集的主要混合定性和定量数据进行描述性和主题分析，这些数据来自对婴儿接受了功能性单心室心脏一期手术的父母（n = 22）的在线调查。
出现了四个主题：父母在诊断时对病情的理解；父母在诊断时的情绪；诊断时的支持来源；以及诊断后的其他信息来源。
在由谁提供诊断以及更重要的是如何解释诊断方面，对实践有启示意义。专业人员需要评估父母的情绪状态、信息需求和理解水平，而不论诊断时间如何，以便提供个性化、贴心且适时的支持。
