Health Literacy and Knowledge Formation in the Information Society

Project members

From left: Theres Bellander, Anna-Malin Karlsson, Mats Landqvist, Ulla Melander Marttala and Zoe Nikolaidou

About the project

Traditionally, health care institutions have been the main providers of information about health and illness. In today's society, though, people search for information in various ways, not least on the Internet. Sometimes patients are also active information providers themselves, e.g. in blogs and discussion forums. Knowing how to find, evaluate and use information is a crucial part of modern health literacy.

This research project was funded by the Swedish Research Council (2015-2017) and carried out at the universities of Uppsala, Södertörn and Stockholm, Sweden. It investigated how pregnant women and their partners, as well as parents to children with congenital heart defects, navigate through the resources offered by care givers, search engines, medical websites, private blogs, online social networks and patient organizations after receiving a pre-natal diagnosis of a congenital heart defect in their fetus. We studied how they experience communication with health care institutions, how they search, value and produce information and how they build knowledge about the heart defect and what it means to them.

The project’s publications are listed here:
Publication list

International presentations

A normal child or a heart child? Conceptions of normality in discourses on prenatally diagnosed heart defect Presentation at the workshop Valuations of Life in Uppsala, September 2018

Paper at Applied Linguistics and Professional Practice (ALAPP) in Cardiff, September 2018: Building up knowledge on heart defect at the intersection of institutionalised and self-initiated learning activities.

Paper at AILA 2017 in Rio de Janeiro, July 23-28 2017 - abstract presentation

Workshop and paper at EELC6, The Sixth Conference on Explorations in Ethnography, Language and Communication, Södertörn University, September 22-23 2016:

  • How do ethnographic methods help us capture social practices generated across online and offline social spaces? (Workshop - abstract)

  • Online information seeking as a health literacy practice: pregnant couples and parents to children with congenital heart defect (Paper - abstract)

Paper at COMET, Communication, Medicine and Ethics, in Aalborg, July 4-6 2016

Papers at Language and Health Online in Basel, April 15-16 2016:

  • Epistemic Comminities in medical online fora - abstract

  • Medical discourse meets lifeworld experience: re-contextualization, evaluation and knowledge formation in the case of children’s heart defect - abstract

  • The shift from reading to writing in health literacy: How parents of children diagnosed with congenital heart defect process information and knowledge by writing about their experience - abstract