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APTIC: a social network to improve the quality of life of members of patients' associations

Authors
Journal
Orphanet Journal of Rare Diseases
1750-1172
Publisher
Springer (Biomed Central Ltd.)
Publication Date
Volume
5
Identifiers
DOI: 10.1186/1750-1172-5-s1-p27
Keywords
  • Poster Presentation
Disciplines
  • Medicine
  • Political Science
  • Psychology

Abstract

APTIC: a social network to improve the quality of life of members of patients’ associations POSTER PRESENTATION Open Access APTIC: a social network to improve the quality of life of members of patients’ associations Manuel Armayones1*, Eulàlia Hernández-Encuentra1, Beni Gómez-Zúñiga1, Noemí Guillamon1, Gerardo Ontiveros1, Ana Bosque2, Begonya Nafría3 From 5th European Conference on Rare Diseases (ECRD 2010) Krakow, Poland. 13-15 May 2010 The APTIC social network has been developed by PSi- NET research group at the Universitat Oberta de Cata- lunya together with Hospital de St. Joan de Déu and Fesalud Foundation, and has been partially funded by Tic Salut Foundation (health department of the Catalan government). Our social network aims at enabling the individual members of patients’ associations (mostly par- ents of children with chronic and rare diseases) to share experiences, information, advice and, ultimately, to offer them on-line tools to improve the quality of life of the entire family. Participation in specialised social networks like APTIC offers a great opportunity to use technology to improve quality of life with low cost and with a large impact on health. From the health psychology perspective, variables such as the perception of self-efficacy, empowerment and social support are key to improving quality of life. For this reason, like health psychologists we are inter- ested in the analysis of these variables and in their impact on the quality of life of members of patients’ associations. We are examining these variables and net- work usage in order to establish whether social net- works are indeed useful for parents. Our social network has been built on open source software and through collaborative work between orga- nisations (the hospital itself, patients’ associations...) and individual users. We will offer our first results and some thoughts about the work with patients and families through social networks. Our goal is to enhance their positive effects, for i

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