It is necessary to talk about children's and adolescents' education for citizenship beyond the vindication of spaces for citizen action. It is necessary to incorporate the principle of progressive autonomy highlighted by the Convention on the Rights of the Child of 1989 in terms of 'evolving capacities', from the knowledge of their rights and their exercise. This article aims to analyse the concept of substantive citizenship of children and adolescents based on their right to participation and from the recognition of their agency, as well as the promotion of and respect for the principle of progressive autonomy. Based on a participatory narrative research with a sociocritical perspective, 23 discussion groups were carried out with 210 young people between 15 and 19 years old in five Iberoamerican cities: Barcelona, Buenos Aires, Mexico City, Madrid and Sao Paolo. From the content analysis of their contributions, three dimensions emerge: to know oneself as a subject of rights from the knowledge of these rights, the importance of intergenerational relations in recognising progressive autonomy, and the incidence of age in the development of their autonomy. As conclusions, it should be noted that young people in the five cities know their rights and recognise that family, school and social medeia favour their recognition as subjects of rights Cómo referenciar este artículo / How to reference this article
Neurological disorders (ND) are diseases that affect the brain and the central and autonomic nervous systems, such as neurodevelopmental disorders, cerebellar ataxias, Parkinson’s disease, or epilepsies. Nowadays, recommendations of the American College of Medical Genetics and Genomics strongly recommend applying next generation sequencing (NGS) as a first-line test in patients with these disorders. Whole exome sequencing (WES) is widely regarded as the current technology of choice for diagnosing monogenic ND. The introduction of NGS allows for rapid and inexpensive large-scale genomic analysis and has led to enormous progress in deciphering monogenic forms of various genetic diseases. The simultaneous analysis of several potentially mutated genes improves the diagnostic process, making it faster and more efficient. The main aim of this report is to discuss the impact and advantages of the implementation of WES into the clinical diagnosis and management of ND. Therefore, we have performed a retrospective evaluation of WES application in 209 cases referred to the Department of Biochemistry and Molecular Genetics of the Hospital Clinic of Barcelona for WES sequencing derived from neurologists or clinical geneticists. In addition, we have further discussed some important facts regarding classification criteria for pathogenicity of rare variants, variants of unknown significance, deleterious variants, different clinical phenotypes, or frequency of actionable secondary findings. Different studies have shown that WES implementation establish diagnostic rate around 32% in ND and the continuous molecular diagnosis is essential to solve the remaining cases.
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INTRODUCCIÓN. La Estrategia para los Derechos del Niño (2022-2027) ha señalado la importancia de fortalecer las relaciones de colaboración entre las autoridades políticas y la población infantil para defender los derechos de los niños y su inclusión en la toma de decisiones locales, estatales y europeas. El objetivo de este trabajo es identificar los elementos facilitadores, barreras y propuestas de las prácticas participativas con la infancia en la red de municipios que forman parte de la Asociación Internacional de Ciudades Educadoras (AICE) y de Ciudades Amigas de la Infancia (CAI). Identificar estos elementos posibilitará proponer acciones estratégicas que redunden en la participación infantil en la vida política y democrática. MÉTODO. Este estudio que se presenta forma parte de un proyecto nacional sustentado en un diseño de métodos mixtos. Los datos se recogieron mediante dos encuestas autoadministradas en línea diseñadas ad hoc. La muestra la conformaron 136 niñas, niños y adolescentes, 191 figuras técnicas municipales y 88 cargos electos. Se aplicó un análisis de contenido mediante el Atlas-ti para el análisis de los datos. RESULTADOS. La muestra encuestada coincide en destacar la necesidad de un mayor compromiso político a favor de la participación infantil, así como extender los espacios donde los menores de dieciocho años puedan tomar decisiones y llevar a cabo acciones que transformen su entorno. DISCUSIÓN. Los resultados obtenidos apoyan la importancia de valorar la participación infantil, así como la necesidad de impulsar acciones colaborativas entre niños, niñas y adolescentes y los responsables políticos a fin de incidir en la política municipal. Se evidencia la necesidad de que la participación de la infancia en la esfera pública sea visibilizada como imprescindible, se concrete en espacios de acción colaborativa con los cargos electos e incida de forma real en la política municipal, como recomienda el Consejo de Europa.
Municipalities must take steps towards an “educational action” that welcomes children into environments that estimulate their involvement and participation in issues that mean something to them. Professionals working directly with children in the municipal sphere must strengthen the development of their active and committed citizenship (SDG no. 4), relating to them as citizens capable of transforming their environment. Children’s participation requires adults who recognise them as interlocutors and establish relationships of trust and mutual respect with them. Municipalities need to create opportunities for children to be included in the co‐production of local projects and to take a leading role in public policies. This article aims to offer elements that can nurture professionals’ readiness and “capacity building” to facilitate children’s participation. These elements are formed in the context of a pedagogical practice (the “coffee meetings”) and emerge through a systematisation of experiences (Aguiar, 2013; Barnechea & Morgan, 2010; Jara, 2012, 2018; Mera, 2019). Coordinated by an inter‐university team, the reflective exchange promoted by the meetings between municipal technical professionals and elected representatives generates knowledge, ideas, and changes in participants’ approaches to children’s participation in municipalities’ decision‐making processes; content analysis, development, and evaluation of the meetings by participants provide insight into the value of a learning community established as a tool to innovate child participation, build professional capacity towards this goal, and strengthen the work of local administrations in the field of citizenship.
Resumen Este artículo aborda la función docente en las prácticas externas del grado de Educación Social de la Universidad de Barcelona a partir de la percepción de cada uno de los agentes implicados: los tutorescentro, los tutores-universidad y los estudiantes. Las prácticas externas se enmarcan en un modelo participativo, reflexivo y dialógico, caracterizado por el protagonismo del estudiante en su proceso de formación. En este sentido, el trabajo se inscribe en el marco de una investigación cuyo objeto es analizar la función docente con el propósito de mejorar las condiciones del aprendizaje y ofrecer un modelo formativo de calidad. A partir de la metodología cualitativo-comprensiva, hemos identificado los elementos que nos permiten formular algunas orientaciones tanto para mejorar la función docente, como para optimizar el modelo de prácticas. Este estudio nos permite concluir que dicho modelo debe venir caracterizado, principalmente, por la corresponsabilidad y la reflexión sobre, en y para la acción formativa.
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