Este documento describe un proyecto para mejorar la calidad de vida de los padres de niños con enfermedades crónicas a través del desarrollo de una red social online. El proyecto busca empoderar a los padres mediante el apoyo social, la autoeficacia y el uso de las TIC. Se espera que la participación en la red social incremente la calidad de vida de los usuarios al tiempo que mejora su aprendizaje y empoderamiento.
Red social APTIC para asociaciones de pacientes pediátricos
1. RED SOCIAL APTIC -ASOCIACIÓN PACIENTES Y TIC M.Armayones; E.Hernández;B.Gómez;N.Guillamón; C.Bocanegra y G.Ontiveros. Grupo de investigación PsiNET y FESALUD [email_address] http://in3.uoc.edu/opencms/opencms/webs/grups_de_recerca/psinet/CA/
2. OBJETIVO GENERAL DEL PROYECTO Mejorar la calidad de vida de los padres miembros, o no, de asociaciones de pacientes pediátricas a través de su empoderamiento [email_address]
Brief description: Internet is a common tool in our daily living that offers new possibilities for communicating and delivering health care treatments. One of these possibilities is to use Internet to create a community where professionals (such as psychologists) and caregivers can work together in order to generate processes to improve the quality of life, by providing caregivers with resources to cope with difficult situations. From this perspective, in this session, two projects aimed to improve quality of life of caregivers will be discussed. Psinet is a research group of the Internet Interdisciplinary Institute of the UOC. We work on Psychology, Health and the Net and now we are working on using the internet to improve the quality of life of different groups of people.
què vol dir per a PSiNET combinar la intervenció V i H a la Xarxa. From the key points presented, the main objective of our work is Improving caregiver’s quality of life trough online interventions.
què vol dir per a PSiNET combinar la intervenció V i H a la Xarxa. From the key points presented, the main objective of our work is Improving caregiver’s quality of life trough online interventions.
Actors: Redefinició de polítiques sanitàries (Farmaindustria, 2005; García Semper ei Artells, 2005; Quennell, 2003) Espai d’Associacions Hospital Sant Joan de Déu. Formació per a associacions (Fº Doctor Robert) Benefits from taking part of an online social network (participation, communication, knowledge, local action, personal growth, ongoning improving, collaboration). 1. Actors: Redefinició de polítiques sanitàries (Farmaindustria, 2005; García Semper i Artells, 2005; Quennell, 2003) Espai d’Associacions Hospital Sant Joan de Déu. Formació per a associacions (Fº Doctor Robert) 2. Benefits from taking part of an online social network (participation, communication, knowledge, local action, personal growth, ongoning improving, collaboration). Burrows, Ferguson, Eysenbach. (improvement of perceived quality of life). (Needs of information, support and formation) Knowledge community Com identificar els canvis? Avaluació personal. Avaluació personal després d’usar la xarxa social. Exactly which effects?;Efficacy? (Murray et al, 2006) By which processess? 3. Key Points : structure of previous relationships, subscription, social know how (facilitator role) and technical expertise (manager role) (Rada, 2007; Jiménez-Pernett et alt, 2009; Sánchez et al, 2009) Growing a successful online social network requires social know how as well as technical expertise. You think not only about the informatiion about if I would and how I would do it. Communicate it. Pro-Am (Leadbeater & Miller, 2004). The person in the center, health actor What you do, not how many people. Health 2.0. Alt nivell d’implicació I exigència. Control de la informació per part de les associacions.--> significat, empoderament, propi. Personal assistance is needed: és una forma de descarregar-se, de deixar la responsabilitat de tirar del carro en un altre. Organization of patient centered care expectation management is a prerequisite to delivering ehealth care through technology. Externalizes: you processes your life in a different way. Distributed knowledge: nobody is an expert on everything, so we must rely on the expertise of others. A reason to share Know who knows the answer. Productive relationships share & feel favourably reached to anwer questions within the network.
Eu, he posat el objectiu secundari a la transpa de l’objectiu, crec que així queda més clar.
Datos descriptivos de la entidad Relación y uso del sistema de salud Uso y satisfacción con el Espacio de Asociaciones Uso de las TIC Necesidades informativas, formativas y de apoyo
First of all, as we the previous project, we would like to show you three screenshots of the platform. In this first screenshot you can see the initial webpage, and the main elements of the plattform ….. NO m’atreveixo a explicar-ho, no estic segur de com funciona..