Building health knowledge online : Parents’ online information searching on congenital heart defects

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.