Abstract

Background: Sjogren Syndrome (SS) is a chronic autoimmune disease of low prevalence therefore little-known by the population. Most of the patients take note about this disease at the moment of diagnosis. The need of information drives to patients to search it via the Internet. The aim of this study was to identify the psychological reaction of women with SS when internet is used to obtain information about the disease. Methods: In depth-interview were carried out in women with SS considering a phenomenological approach. The interviews were analyzed under Grounded Theory principles. Three researchers participated in the production of categories and the discussion about the internet as information source of SS. Findings: The use of internet as information searching tool is frequent among patients. The fear and disorientation are the main psychological response to available information in internet due to serious consequences of disease showed in web sites; in addition patients consider tragic and extremely severe the information about SS. On the other hand, information searched is rarely share with health professionals. Discussion: Web sites are not enough useful as information searching tool because while provide a solution for lack of information conversely lead to detrimental reaction for psychological comfort. The communication and discussion with health professionals seems a key issue for better clinical management of SS.