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

Abstract

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.

Addressing health literacy in the digital domain: insights from a literature review

“…Alongside endangering the individual ability to deal with digital health information and to collaborate with health-care professionals in a perspective of service co-production (Benedicta et al , 2020), limited digital health literacy may also have indirect negative effects on the functioning of the health-care system (Kor et al , 2021). People with limited health literacy may share their misinterpreted health information via digital channels and web-based repositories, paving the way for the diffusion of untrustworthy news which nourish value co-destruction and are harmful for the sustainability of the health-care system (Bellander and Nikolaidou, 2017).…”

Peer Support Experienced by Mothers of Children With Congenital Heart Defects in Sweden

“…Previous research has shown that parents of children with congenital heart defects experience a need for additional information that supplements the information provided by professionals. These parents are often presented with unique challenges related to the child’s health, and search for practical information as a means to deal with their activities in daily life ( Bellander & Nikolaidou, 2017 ). According to another qualitative study, parents who have received a prenatal diagnosis of congenital heart defect in the expected child cope with their situation by gathering information ( Bratt et al, 2015 ).…”

Adults’ numeracy practices in fluid and unstable contexts—An agenda for education, policy and research?

“…At the heart of these questions is the reconfiguration of the community that interacts with people's numeracy practices. As Bellander and Nikolaidou's (2017) study shows, numerate environments may be reconfigured and present opportunities for new communities of trustworthy members to emerge. On the other hand, some changes may fracture a community into individuals isolated from any support structure, leaving them to fend for themselves, or enlarge and accentuate the unequal power relations in the environment, such as a workplace.…”