Fontes de informação sobre doenças raras em ambientes digitais

Abstract

Information and health have a close relationship, when one considers that the subject affected by illnesses demands information and medical advice to regain health or minimize the harm caused by some type of disease. In the context of rare diseases, information is often a scarce resource, but essential for the survival and quality of life of people in atypical conditions. The main research objective consisted of mapping articles on rare diseases through the CAPES Portal, the Virtual Health Library, SciELO and journals in the area of "Communication and Information", the same as most journals dealing with Information Science is inserted. As specific objectives, we sought to verify the scientific production on sources of information on rare diseases, select sources of health information on rare diseases in portals and magazines and categorize the sources of information. In methodological terms, the research was developed through the evidentiary paradigm concomitant with the content analysis, classified as qualitative with the use of quantifiable resources for document organization. As for its approach, it is applied research, of an exploratory nature; bibliographic and documentary, regarding its procedures.For data collection, the browsing technique was used: to navigate, identify and retrieve articles in the portals defined for the bibliographic and documentary survey. For data analysis, the evidentiary method was used, which allowed categorization, the latter coming from content analysis. The data were organized based on the thematic content, and the authors' academic background was also analyzed as a complementary element to the information obtained for the research. Based on the evidence, it was concluded that Information Science did not contribute in terms of sharing sources of information on rare diseases. Thus, it is considered important to investigate the sources of information, especially on rare diseases, within an informational perspective.