TOGETHER: overcoming socio-educational barriers and promoting literacy on the interferences and difficulties in understanding information and documentation aimed at families of children affected by rare diseases.
RecerCaixa 2015. Avancem la ciència. ACUP and Obra Social "La Caixa". Resources: 100,000 euros.
IP: Rosa Estopà (UPF) (70%) and Manuel Armayones (UOC) (30%)

Project

Health Literacy involves knowledge, motivation and abilities to access, understand, evaluate and apply information in order to be able to both have a reasoned opinion and to make decisions about health, treatment of illness and increasing the quality of life.

The project TOGETHER starts from a specific problem: the fact that the linguistic and cognitive interferences in texts produced by professional and associations, for patients and families, block the comprehension of these texts. In the context of a rare disease, the project has the challenge of bringing health information closer to families and providing health solutions (a recommendations protocol for professionals and associations, and an app with appropriate information for affected families) that will allow a more inclusive literacy for this group of people.

Objectives

  • Analyze written information received by families with a child affected by a rare disease.
  • Study how these families assimilate the information received from professionals and associations.
  • Identify the different communication problems that impede equal access to health.
  • Create response protocols adapted to the communication abilities of these families.
  • Design an application that complements the inclusion efforts and Health Literacy.

Project benefits

  • Progress in improving communication among health professionals, patients / families and associations.
  • Transforming ability, because, based on specific communication problems, it provides scientific solutions aimed at both health professionals and people affected.
  •  Inclusion potential, because it responsibly involves in research the society, both in the analysis as in the created applications.

The project involves the participation of patient’s families, linguists, psychologists, doctors, documentalists and associations; and its final goal is a progressive empowerment of the patient and the family which facilitates access to information and appropriate and equitable decision making about their health and their disease.