Abstract

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.