The study examines online searching as a digital health literacy practice and focuses on parents of children with congenital heart defects. Over the period of four years, we have conducted interviews with couples at different stages of pregnancy or parenthood and have encouraged them to reflect on their literacy practices when receiving a heart defect diagnosis, during the remaining time of their pregnancy and when living with a child with a heart defect. We have also read and analysed health blogs written by parents and focused on extracts where literacy events are described. Searching for information and support online is one of the most frequent practices amongst the participants in the study. The aim of this paper is therefore to highlight the complexity of looking for information online in order to take health decisions and provide care to a child with congenital illness. Based on what parents say they do when searching online, we focus on three main paths to knowledge: looking for medical facts, looking for other parents’ experiences and looking for practical information. We discuss digital health literacy practices as complex activities that often involve parents in the diagnosis and in the child’s medical care to such an extent that parents build up knowledge and become experts, not only in finding information and support but in talking and writing about their child’s illness. We also problematise the notion of trustworthy health information and show how facts and opinions often go hand in hand in platforms where health issues are discussed. Finally, we show some of the affordances and restrictions inherent in using the internet as a source for meaning making and learning about children’s health. The results reinforce our understanding of the socially framed nature of health literacy and make us focus on the digital as an additional important aspect in the practice of health literacy.

中文翻译：

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在线建立健康知识：父母在先天性心脏病方面的在线信息搜索

该研究将在线搜索作为一种数字健康素养实践进行了检验，并重点研究了患有先天性心脏病的儿童的父母。在过去的四年中，我们对处于怀孕或生育不同阶段的夫妇进行了访谈，并鼓励他们在接受心脏缺陷诊断，妊娠剩余时间以及与孩子生活时反思自己的识字习惯有心脏缺陷。我们还阅读并分析了父母撰写的健康博客，重点关注描述识字事件的摘录。在研究参与者中，在线搜索信息和支持是最常见的做法之一。因此，本文的目的是强调在网上寻找信息以做出健康决定并为患有先天性疾病的孩子提供护理的复杂性。根据父母说在网上搜索时所做的事情，我们重点关注三种主要的知识途径：寻找医学事实，寻找其他父母的经历以及寻找实用信息。我们将数字健康素养实践作为复杂的活动进行讨论，通常使父母参与诊断和儿童医疗保健，以至于父母积累了知识并成为专家，不仅在寻找信息和支持方面，而且在谈论和撰写有关孩子的知识方面疾病。我们还将可信赖的健康信息的概念质疑化，并说明事实和观点如何经常在讨论健康问题的平台中并存。最后，我们展示了使用互联网作为有意义的手段和学习儿童健康的资源所固有的一些负担和限制。结果加强了我们对健康素养的社会框架性质的理解，并使我们专注于数字技术，将其作为健康素养实践中的另一个重要方面。