Social networks and chronic and rare diseases

JUNTS. Overcoming barriers and promoting socio-health literacy: intervention difficulties in understanding information and documentation addressed to families of children affected by rare diseases.

2016-2018 - PROJECTE Recercaixa 215ACUP 00187. Universitat Oberta de Catalunya, Universitat Pompeu Fabra.

Open University of Catalonia, Pompeu Fabra University Identification of communication problems that hinder the understanding of medical information, both oral and written, addressed to families of children with rare diseases. Development of protocols with recommendations to bring families expert information appropiately; design and implementation of an application that complements the actions of inclusion and health literacy.

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SUMMARY

Very often, texts generated by heath professionals or assotiations and aimed at patients and famílies can cause cognitive and lingüístic interferences that hinder, or even prevent, correct assimilation. This situation is even more evident in the case of a pediatric rare disease, because of its emotional impact on the family and  the difficulties that parents have when interpreting the medico-sanitary documentation, full of new terms, acronyms not understood or demotivating or impersonal statements.

The project wants to work TOGETHER (JUNTS), with health professionals and affected families, by promoting health literacy and empowerment of patients and their families, giving them resources to communicate, understand, and take decisions.

On the project website you will find much more information

JUNTS:

https://portal.upf.edu/web/medicina_comunicacio

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TEAM

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MATERIALS

Armayones, M.; Pousada, M.; Gómez-Zúñiga, B. y Serrano, M. (2012). Factores psicológicos en la alfabetización en salud. En Basagoiti (Ed.). Alfabetización en salud. De la información a la acción (pp. 317-328). Valencia: ITACA-TSB

Available at: http://www.salupedia.org/alfabetizacion/

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COLLABORATIONS

Federación Española de Enfermedades Raras (FEDER)

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PROJECTE FINANÇAT PER

recercaixa     Obra Social La Caixa. Projecte Recercaixa