Documentation written between the health professional and the patient/family affected by a rare disease
An anonymous consented (according to the LOPD) digital corpus will be set up with the documents received by the families during the first five years after the first consultation. The corpus will be processed with corpus exploration tools and a qualitative and quantitative study of the elements in the texts that do not provide specialized readability will be performed.
Information from websites of associations linked to rare diseases
Websites from three federations that bring together hundreds of associations of rare diseases will be evaluated: FEDER at a national level, EURORDIS in Europe and NORD, in order to include the North American perspective. Arrangement of the information will be evaluated from a documentary and a cognitive-linguistic point of view, taking into account scales used in the first work package.
Information on online social networks among families with a child affected by a rare disease
Given the participatory approach of the affected group in the project, Facebook messages from the three institutions mentioned above, and in a closed channel, written by families of children affected by a rare disease will be analyzed.
Survey to families with a child affected by a rare disease
The project is based on a participatory and inclusion approach of the families of children affected by a rare disease, therefore a survey, always from a research responsible perspective, to families will be performed in order to know the level of understanding of medical documentation received in the first 5 years of the disease. The survey will go through associations linked to FEDER.
Recommendations protocol to bring written health communication to a standard level of understanding
A recommendations protocol for both health professionals and those responsible for the associations will be prepared to facilitate the adaptation of information for families affected by a rare disease. The protocol will be made up by the reports prepared in work packages 2, 3, 4 and 5. All the researchers involved in the Project will take part in writing the protocol. It will be published in Catalan and English.
App TOGETHER
We will design a free, intuitive and simple app, with different levels of access and information. The common thread will be 10 chronological issues (such as the uncertainty of diagnosis, diagnosis, medication, doctor visits, etc.), independently accessible. Each unit will consist of videos with testimonies and health professionals, a simple hypertext, a more complex text, a dictionary appropriate for patients, extra information such as tips, resources and links. The design of the app will involve the whole team and especially the groups affected.
