University of Oulu

Rotonen, A., Hirvonen, N., & Huotari, M.-L. (2021). Harvinaissairaiden käsityksiä sairaudesta ja sitä koskevan tiedon kognitiivisista auktoriteeteista. Informaatiotutkimus, 40(3), 269–295.

Harvinaissairaiden käsityksiä sairaudesta ja sitä koskevan tiedon kognitiivisista auktoriteeteista

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Author: Rotonen, Annika; Hirvonen, Noora1; Huotari, Maija-Leena1
Organizations: 1Oulun yliopisto
Format: article
Version: published version
Access: open
Online Access: PDF Full Text (PDF, 0.4 MB)
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Language: Finnish
Published: Informaatiotutkimuksen yhdistys, 2021
Publish Date: 2022-02-08


This article examines the illness representations as viewed by Finnish adults with a hereditary rare disease, and ways these representations manifest in their information behaviour, focusing on the cognitive authority of information sources. Data were gathered with five theme interviews and analysed using theory bound content analysis. The results show that doctors and researchers specialised in rare diseases had a central cognitive authority status among the patients. Additionally, personal expertise and experience, and peer information, particularly of practicalities, were also crucial. Information sources, and information provided by the sources, were significant in constructing illness representations and for controlling the disease. The core information sources and their evaluation varied in different disease phases and along with evolving illness identity. The results cannot be generalised to all Finnish adults with a rare disease but they add knowledge about patients’ views of information sources in a situation where information is scarce. Because of the general lack of information about rare diseases, information supply, information behaviour and information creation are examples of prolific study subjects.

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Series: Informaatiotutkimus
ISSN: 1797-9137
ISSN-E: 1797-9129
ISSN-L: 1797-9137
Volume: 40
Issue: 3
Pages: 269 - 295
DOI: 10.23978/inf.111050
Type of Publication: A1 Journal article – refereed
Field of Science: 520 Other social sciences
518 Media and communications
Funding: Tutkimusta on rahoittanut Suomen Akatemia (n:o 321266).
Academy of Finland Grant Number: 321266
Detailed Information: 321266 (Academy of Finland Funding decision)
Copyright information: © 2021 Annika Rotonen, Noora Hirvonen, Maija-Leena Huotari. Artikkeli on lisensoitu Creative Commons Nimeä-EiKaupallinen-JaaSamoin 4.0 Kansainvälinen Julkinen -lisenssillä.