The JUNTS project. Overcoming socioeducational barriers and fostering health literacy: intervention on interferences and difficulties in understanding information and documentation addressed to families of children suffering from rare diseases, received one of the 19 RecerCaixa 2015 grants which were awarded on Wednesday 27 January, 2016.
The researchers leading the project are Dr. Rosa Estopà of the Universitat Pompeu Fabra IULATERM group (Vocabulary and Technology) and Dr. Manuel Armayones of the Universitat Oberta de Catalunya PSiNET (Psychology, Health and Internet) Research Group.
JUNTS is an interdisciplinary, interuniversity project with support from FEDER (Spanish Federation of Rare Diseases). In addition to the IULATERM and PSiNET groups, further collaboration is provided by researchers from the Universitat de Barcelona, UNED, Universidad Cardenal Herrera and São Paulo State University, as well as junior researchers from Paraiba University and Paris Diderot University. Funding for the project amounts to 100,000 euros.
The challenge of the JUNTS project is to provide medical information to families with a child suffering from a rare disease. The proposed aims of the project are:
The results of the JUNTS project will contribute to solving a very specific communication problem: the fact that the medical language and terminology of the texts written by professionals aimed at family members and associations of sufferers of rare diseases interferes in the necessary assimilation of the information, which affects patients’ and their family members’ quality of life.
JUNTS is an interuniversity research project with an inclusive approach that involves society in a responsible manner through associations for the sick and their families, in both the analysis and the applications it generates. Research in the field of so-called Health 2.0 is basic at present, and starts with the idea of empowering patients and associations to manage their health issues. At the same time, however, it requires applications and specifically designed services, stemming from the need for increasing the health literacy of the entire population, in order to provide especially vulnerable groups with access to information and equitable and accurate decision-making concerning their health and their disease..The researchers participating are:
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