Marino Luise V, Johnson Mark J, Davies Natalie J, Kidd Catherine, Richens Trevor, Bharucha Tara, Darlington Anne-Sophie
Department of Dietetics/SLT, University of Southampton, Southampton, UK.
NIHR Biomedical Research Centre Southampton, University of Southampton, Southampton, UK.
Cardiol Young. 2019 Sep;29(9):1165-1171. doi: 10.1017/S1047951119001665. Epub 2019 Aug 5.
Infants with CHD often experience growth failure. Ensuring optimal growth before surgery is associated with improved outcomes and has emerged as a significant cause of parental stress. Parents have reported a perceived lack of accessible feeding information for infants with CHD. To address this gap, the aim of this study was to develop feeding information to better support parents.
A search for existing material on six electronic databases and an internet search for unpublished (grey) literature on feeding information for infants with CHD were carried out. Following the development of feeding information, semi-structured interview(s) with parents/health-care professionals were completed, focusing on whether the information was easy to understand, relevant, provided sufficient information around feeding/feeding difficulties, and whether there were any information gaps. Iterative changes were made to the information following each interview. The process was completed until thematic saturation was achieved.
A total of 23 unique articles were identified of which 5 studies were included. From the grey literature, four web pages were reviewed. A total of 22 parents and 25 health-care professionals were interviewed. All parents/health-care professionals felt that the feeding information developed provided sufficient information; however, many wanted information on how to introduce complementary food, particularly if weaning was delayed.
This study describes the development of feeding information for infants with CHD. From parent interviews, gaps identified focused on the introduction of complementary foods and uncertainty regarding the feeding journey beyond surgery.
患有先天性心脏病（CHD）的婴儿常出现生长发育迟缓。确保手术前实现最佳生长发育与改善预后相关，并且已成为导致家长压力的一个重要原因。家长们表示，感觉缺乏针对患有CHD的婴儿的易于获取的喂养信息。为了填补这一空白，本研究的目的是制定喂养信息，以更好地支持家长。
在六个电子数据库中搜索现有资料，并在互联网上搜索关于患有CHD的婴儿喂养信息的未发表（灰色）文献。在制定喂养信息之后，完成了与家长/医疗保健专业人员的半结构化访谈，重点关注信息是否易于理解、是否相关、是否围绕喂养/喂养困难提供了足够的信息，以及是否存在任何信息空白。每次访谈后都对信息进行了反复修改。该过程一直持续到达到主题饱和。
共识别出23篇独特的文章，其中纳入了5项研究。从灰色文献中，审查了四个网页。共访谈了22名家长和25名医疗保健专业人员。所有家长/医疗保健专业人员都认为所制定的喂养信息提供了足够的信息；然而，许多人希望获得关于如何引入辅食的信息，特别是在断奶延迟的情况下。
本研究描述了针对患有CHD的婴儿的喂养信息的制定过程。从家长访谈中发现的空白集中在辅食的引入以及手术之后喂养过程的不确定性方面。
