Institutionen för nordiska språk

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 project investigates 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 study 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. This is a linguistic study and the main methods used are ethnography, conversation analysis and multimodal discourse analysis.

The project is funded by the Swedish Research Council (2015-2017) and carried out at the universities of Uppsala, Södertörn and Stockholm, Sweden. We have a close collaboration with medical professionals at the Academic Hospital in Uppsala and at Astrid Lindgren Children's Hospital in Stockholm.

Our project flyer (summer 2017)

International presentations

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

Publications in English

Bellander Theres & Landqvist. Mats. 2018: Becoming the expert constructing health knowledge in epistemic communities online. In: Information, Communication & Society, DOI: 10.1080/1369118X.2018.1518474 (full text online).

Bellander, Theres, Karlsson, Anna-Malin & Nikolaidou, Zoe. 2018. Blogging as a Health Literacy Practice. Identity construction and knowledge-building in the writing of parents of children with heart defect. In: Hållsten, Stina & Nikolaidiu, Zoe (eds.): Explorations in Ethnography, Language and Communication: Capturing Linguistic and Cultural Diversities. Södertörn Discourse Studies 7. Huddinge: Södertörn University. Pp. 127-152. (Full text online.)

Bellander, Theres & Nikolaidou, Zoe. 2017. Building health knowledge online: Parents’ online information searching on congenital heart defects. I: Literacy and Numeracy Studies 25:1. (Full text online.)

Landqvist, Mats, 2016. Sense and sensibility - online forums as epistemic arenas. In press. Discourse, Context & MediaVolume 13, Part B, September 2016, Pages 98–105.

In collaboration with the Heartlink project

Carlsson, Tommy, Melander Marttala, Ulla, Wadensten, Barbro, Bergman, Gunnar, Axelsson Ove & Mattsson Elisabet. 2017: Quality of Patient Information Websites About Congenital Heart Defects: Mixed-Methods Study of Perspectives Among Individuals with Experience of a Prenatal Diagnosis. In: Interactive Journal of Medical Research;6(2):e15.

Carlsson, Tommy, Melander Marttala, Ulla, Wadensten, Barbro, Bergman, Gunnar & Mattsson, Elisabet. 2016. Involvement of persons with lived experience of a prenatal diagnosis of congenital heart defect: an explorative study to gain insights into perspectives on future research. In: Research Involvement and Engagement (2016) 2:35. DOI 10.1186/s40900-016-0048-5. Länk till fulltext.

Carlsson, Tommy, Landqvist, Mats and Mattsson, Elisabet. 2016. Communication of support and critique in swedish virtual community threads about prenatal diagnoses of fetal anomalies. BMC Pregnancy and Childbirth, 16.

Carlsson Tommy, Bergman Gunnar, Karlsson Anna-Malin, Wadensten Barbro and Mattsson Elisabet. 2016. Experiences of termination of pregnancy for a fetal anomaly: A qualitative study of virtual community messages. Midwifery. 2016;41:54-60.

Carlsson, Tommy, Melander Marttala, Ulla, Mattson, Elisabet and Ringnér, Anders. 2016. Experiences and preferences of care among Swedish immigrants following a prenatal diagnosis of congenital heart defect in the fetus: a qualitative interview study. BMC Pregnancy and Childbirth. 16:130. Link to full text.

Carlsson, Tommy, Bergman, Gunnar, Karlsson, Anna-Malin och Mattson, Elisabet. 2015.Content and Quality of Information Websites About Congenital Heart Defects Following a Prenatal Diagnosis. Interactive Journal of Medical Research. Vol. 4, nr 1, e4- Link to abstract.

Carlsson, Tommy, Bergman, Gunnar, Melander Marttala, Ulla, Wadensten, Barbro och Mattsson, Elisabet. 2015. Information following a Diagnosis of Congenital Heart Defect: Experiences among Parents to Prenatally Diagnosed Children. PLoS ONE, 10(2), Article ID e0117995. Link to full text.

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