Experiencias vividas por niños y niñas con cáncer a través de la musicoterapia: un proyecto de acción- participación

Justificación: este trabajo muestra una mirada más profunda acerca de cómo viven los niños y niñasla experiencia de vivir con el Cáncer, enfermedad que representa la primera causa de mortalidadentre los 5-14 años, en Cataluña.El profesional de Enfermería es clave en indagar y reflexionar acerca de la experiencia, y endesarrollar el papel que juega la intervención enfermera denominada Musicoterapia comoherramienta de expresión y comunicación, para descubrir que hay detrás de su realidad.Indagar en este contexto puede contribuir a mejorar la calidad de vida del colectivo infantil inmersoen la patología.Objetivo: conocer cómo viven la experiencia oncológica los niños y niñas, utilizando comoherramienta de trabajo la Musicoterapia en el escenario del Hospital Materno-Infantil Vall d´Hebrónde Barcelona.Diseño: proyecto de Investigación Acción-Participativa (IAP), enmarcado en el paradigma cualitativo.Metodología: se llevó a cabo una búsqueda en bases de datos: Pubmed, CINAHL, Cuiden, Cuidatge,entre otras y diferentes fuentes de información. Los sujetos de estudio fueron 14 niños y niñas entre8 y 12 años de edad ingresados en la planta de Oncología durante al menos 8 semanas. Para larecogida de datos se utilizaron las siguientes estrategias: entrevistas semiestructuradas, notas decampo y grupos de discusión.En cuanto al análisis mencionar que se siguió un riguroso trabajo para asignar unidades de significadoa la información obtenida.Consideraciones finales: Este proyecto ha permitido avanzar hacia el conocimiento enfermero yprofundizar en el cuidado holístico de los niños.

Recursos naturales y género. El caso de la comunidad Once de Mayo (Campeche, México)

Este estudio pretende realizar una aproximación al papel de la cooperación en el empoderamiento femenino sobre los recursos naturales en la comunidad rural mexicana Once de Mayo. Para ello se analizan las experiencias de doce participantes en proyectos destinados a mujeres utilizando como medios la historia de vida, la observación participativa y los talleres. De todo ello se desprende la importancia de que los programas y/o proyectos aborden las necesidades prácticas de las mujeres, vinculadas a su hogar, sin omitir sus necesidades estratégicas de género como elementos para el empoderamiento. Además, para el empoderamiento femenino a través de la cooperación es fundamental el desarrollo de actitudes de liderazgo por parte de alguna/as de las participantes y el propio interés de todas las involucradas en colaborar, además de sus experiencias previas de capacitación en diferentes temáticas.

Systems medicine and integrated care to combat chronic noncommunicable diseases

We propose an innovative, integrated, cost-effective health system to combat major non-communicable diseases (NCDs), including cardiovascular, chronic respiratory, metabolic, rheumatologic and neurologic disorders and cancers, which together are the predominant health problem of the 21st century. This proposed holistic strategy involves comprehensive patient-centered integrated care and multi-scale, multi-modal and multi-level systems approaches to tackle NCDs as a common group of diseases. Rather than studying each disease individually, it will take into account their intertwined gene-environment, socio-economic interactions and co-morbidities that lead to individual-specific complex phenotypes. It will implement a road map for predictive, preventive, personalized and participatory (P4) medicine based on a robust and extensive knowledge management infrastructure that contains individual patient information. It will be supported by strategic partnerships involving all stakeholders, including general practitioners associated with patient-centered care. This systems medicine strategy, which will take a holistic approach to disease, is designed to allow the results to be used globally, taking into account the needs and specificities of local economies and health systems.

La democratización de la investigación biomédica

La tecnociencia biomédica debe abrir sus puertas a la democracia. El poder político y el derecho deben redefinir sus relaciones con la tecnociencia para que los científicos, expertos y ejecutivos de las empresas tecnocientíficas no sigan teniendo sólo en sus manos las decisiones sobre la orientación de las investigaciones y las prioridades científico-tecnológicas. La política de la ciencia y sus aplicaciones técnicas deben abrirse a la participación ciudadana, pasar a formar parte de la opinión pública y a ser tratados como asuntos transversales de las políticas públicas. Para ello es necesario que el principio democrático se instale en el seno de la tecnociencia. La libertad de investigación no es incompatible con el hecho de que las decisiones sobre la política científica sean, además de responsables, participativas y transparentes.

Art públic, regeneració urbana i participació. El projecte Cartografies de La Mina

[eng] The evolution of public art throughout the twentieth century has resulted since the 60"s in a kind of practical intervention in the urban domain with a strong social and participatory intention. This paper presents several of these projects in relation to the kind of participattory levels, and detecting different trends. The paper Specially focuses on the project"Cartografies de La Mina", developed in Sant Adrià de Besòs (Barcelona) between 2002 and 2005 by the POLIS Research Centre at the University of Barcelona.

Inclusion and empowerment in public art and urban design

To involve citizens in developing the processes of city making is an objective that occupies part of the agenda of political parties in the context of the necessary renewal in representative democracy. This paper aims to provide some answers to the following questions: Is it possible to overcome the participatory processes based exclusively on the consultation? Is it possible to"train" residents to take an active role in decision-making? How can we manage, proactively, the relationship between public actors, technicians and politicians, in a participatory process? We analyse the process development for creating the Wall of Remembrance in the Barcelona neighbourhood of Baró de Viver, a work of public art, created and produced by its neighbours, in the context of a long participatory process focused on changing the image of the neighbourhood and the improvement of public space. This result and this process have been possible in a given context of cooperation among neighbours, local government and the research team (CR-Polis, Art, City, Society at the University of Barcelona). The development of a creative process of citizen participation between 2004 and 2011 made possible the direct management of decision making by the residents on the field of the design of public space in the neighbourhood. However, the material results of the process does not overshadow the great achievement of the project: the inclusion of a neighbourhood in taking informed decisions because of their empowerment in public space design and management of their remembrances.

Systems Medicine and Integrated Care to Combat Chronic Noncommunicable Diseases.

We propose an innovative, integrated, cost-effective health system to combat major non-communicable diseases (NCDs), including cardiovascular, chronic respiratory, metabolic, rheumatologic and neurologic disorders and cancers, which together are the predominant health problem of the 21st century. This proposed holistic strategy involves comprehensive patient-centered integrated care and multi-scale, multi-modal and multi-level systems approaches to tackle NCDs as a common group of diseases. Rather than studying each disease individually, it will take into account their intertwined gene-environment, socio-economic interactions and co-morbidities that lead to individual-specific complex phenotypes. It will implement a road map for predictive, preventive, personalized and participatory (P4) medicine based on a robust and extensive knowledge management infrastructure that contains individual patient information. It will be supported by strategic partnerships involving all stakeholders, including general practitioners associated with patient-centered care. This systems medicine strategy, which will take a holistic approach to disease, is designed to allow the results to be used globally, taking into account the needs and specificities of local economies and health systems.

Los Grandes olvidados: las personas mayores en el entorno rural = The Great Forgotten Issue: Older People in Rural Context

Ageing is a heterogeneous subject being been able to distinguish profiles in function of sex, age, economic situation, cultural levels, habitat, family structure, health, etc. The objectives of this article are to identify forms of life to age in the rural environment and to concretize intervention proposals to increase active and participatory ways of life. 7 in-depth interviews to experts, 21 to older people, 5 to professionals and two focal groups of professionals and significant social agents were performed to collect data. Results identify 4 styles of aging: an opportunity for the change; a natural phase of the life; a moment to compensate and; a moment of abandonment. Conclusions summarize intervention proposals to increase active and participatory ways of ageing in different contexts to help professionals responsible for the services of older people care

Análisis de los comentarios de los usuarios en la prensa española en el debate de ‘Ley Wert’

La opinión de muchos lectores de prensa digital española se expresa en los comentarios. El artículo es un estudio de las reacciones emitidas por los lectores a propósito de la propuesta de la Ley Wert (durante el mes de mayo de 2013). Las principales conclusiones que se extraen del análisis es que la participación (1) es escasamente complementaria o nula a la información profesional y, en consecuencia, (2) no contribuye, en el ejemplo analizado, al llamado periodismo participativo. El estudio ha permitido radiografiar el tipo de participación y debatir sobre su pertinencia en las principales cabeceras de la prensa digital española

Trencant espais fixes: programa de prevenció contra l'homo / trans fòbia a l'escola

“Trencant espais fixes: Programa de prevenció contra l’(homo/trans)fòbia a l’escola” és un programa finançat per l’Ajuntament de Barcelona que pren per objectiu prevenir i suprimir l’opressió que reben gais, lesbianes, transsexuals i bisexuals (LGTB) dins del centre educatiu, així com també d’aquells nens i nenes que transgredeixin les normes socials hegemòniques de gènere (establertes dins d’un sistema catalogat com a sexista, patriarcal i heteronormatiu), a través de la formació i apoderament dels docents dels centres educatius públics i concertats dels diferents districtes de Barcelona –fent ús de la prevenció primària, secundària i terciària-. Es pretén fer incís a l’educació de la diversitat afectivo-sexual, a les manifestacions sexistes, al sistema sexe-gènere-desig, als estereotips i prejudicis establerts en la societat i a les diverses dinàmiques de violència, desigualtat i relacions de poder, a fi de sensibilitzar, conscienciar i proporcionar eines als docents per prevenir i poder fer front a les diferents manifestacions discriminatòries a raó d’orientació sexual o identitat de gènere. S’utilitza una metodologia dinàmica i participativa, estructurada en tres sessions de 2,5h en cadascun dels centres educatius inscrits en el programa (a demanda del centre), el qual pren com a principis rectors la perspectiva integral del gènere, la intervenció preventiva, la transversalitat educativa, el procés participatiu i, finalment, l’interseccionalitat de factors identitaris d’una persona. Es pren consideració al Codi Ètic i Deontològic de la professió de Treball Social, ja que el present programa es caracteritza pel seu caràcter sensible i influent en la vida de les persones. Aquets fet suposa certes limitacions pels dinamitzadors dels tallers/sessions, ja sigui per la pròpia sensibilitat o per la manca de participació o de cohesió del grup destinatari.

An Explanatory Approach to the Political Uses of ICT Initiatives for Participation : Institutions, Context, and Characteristics of the Actors

Political actors use ICTs in a different manner and in different degrees when it comes to achieving a closer relationship between the public and politicians. Usually, political parties develop ICT strategies only for electoral campaigning and therefore restrain ICT usages to providing information and establishing a few channels of communication. By contrast, local governments make much more use of ICT tools for participatory and deliberative purposes. These differences in usages have not been well explained in the literature because of a lack of a comprehensive explanatory model. This chapter seeks to build the basis for this model, that is, to establish which factors affect and condition different political uses of ICTs and which principles underlie that behaviour. We consider that political actors are intentional and their behaviour is mediated by the political institutions and the socioeconomic context of the country. Also, though, the actor¿s own characteristics, such as the type and size of the organization or the model of e-democracy that the actor upholds, can have an influence in launching ICT initiatives for approaching the public.

Online and Offline Participation at the Local Level : A Quantitative Analysis of the Catalan Municipalities

This paper presents a first analysis on local electronic participatory experiences in Catalonia. The analysis is based on a database constructed and collected by the authors. The paper carries out an explanatory analysis of local initiatives in eparticipationand off line participation taking into account political variables (usually not considered in this kind of analysis) but also classical socio-economic variables that characterise municipalities. Hence, we add a quantitative analysis to the numerous case studies on local e-participation experiences. We have chosen Catalonia because is one of the European regions with more initiatives and one that has enjoyed considerable local governmental support to citizen participation initiatives since the 80s. The paper offers a characterisation of these experiences and a first explanatory analysis, considering: i) the institutional context in which these experiences are embedded, ii) the characteristics of the citizen participation processes and mechanisms on-line, and iii) a set of explanatory variables composed by the population size, thepolitical adscription of the mayor, the electoral abstention rate, age, income and level ofeducation in the municipality. The model that we present is explanatory for the municipalities with more than 20,000 inhabitants but it is not for the fewer than 20,000inhabitants. Actually, the number of participatory activities developed by these last municipalities is very low. Among all the variables, population size becomes the mostinfluential variable. Political variables such as political party of the mayor and the localabstention rate have a certain influence but that have to be controlled by population size.

A Game to Promote Understanding about UCD Methods and Process

The User-centered design (UCD) game is a tool forhuman-computer interaction practitioners to demonstrate the key user-centered design methodsand how they interrelate in the design process in an interactive and participatory manner. The target audiences are departments and institutions unfamiliar with UCD but whose work is related to the definition, creation, and update of a product or service.

Online and Offline Participation at the Local level: A Quantitative Analysis of the Catalan Municipalities

This article presents an analysis on local participatory experiences in Catalonia,both online and in-person. The analysis is based on a database set up by theauthors. The article carries out an explanatory analysis of local participatoryinitiatives (on- and offline) taking into account political variables (not usually con-sidered in this kind of analysis) and also classical socio-economic variables thatcharacterize municipalities. Hence, we add a quantitative analysis to the numerouscase studies on local e-participation experiences. We have chosen Catalonia becauseit is one of the European regions with more initiatives and a considerable localgovernment support for citizen participation initiatives since the 1980s. Thearticle offers a characterization of these experiences and an explanatory analysis,considering: (i) the institutional context in which these experiences are embedded,(ii) the citizen participation processes and mechanisms online and (iii) a set ofexplanatory variables composed of the population size and the province to whichthe municipality belongs, the political tendency of the mayor, the electoral absten-tion rate, age, income, level of education, broadband connection and users of theInternet in the municipality. The model that we present is explanatory for munici-palities with more than 20,000 inhabitants but it is not for fewer than 20,000inhabitants. Actually, the majority of these latter municipalities have not developedany participatory activities. Among all the variables, population size is the mostinfluential variable and affects the influence of other variables, such as the politicalparty of the mayor, the local abstention rate and the province.

Los derechos de participación política y administrativa en la Constitución y en los Estatutos de Autonomía: especial referencia al Estatuto de Autonomía de Cataluña

[spa] El estudio afronta la regulación de los derechos de participación en los Estatutos de Autonomía de nueva generación. La novedad que representan estas normas respecto a sus predecesoras es la incorporación de una carta de derechos que vinculan de forma más explícita y detallada a los poderes públicos autonómicos. Los estatuyentes han interiorizado el creciente auge del fenómeno participativo regulando, junto a los tradicionales derechos de participación política, nuevos instrumentos y técnicas participativas, que se enmarcan en el concepto de democracia participativa. Significativa es, en este sentido, la voluntad política plasmada en la competencia que asumen algunos de ellos (Cataluña, Andalucía y Aragón)para la regulación de las consultas populares en cualquiera de sus modalidades ("encuestas, audiencias públicas, foros de participación") distintas el referéndum.