A construção da parentalidade na interação com filhos com Síndrome de Down

No Brasil nasce uma criança com Síndrome de Down (SD) a cada 600 nascimentos, o que representa aproximadamente 8.000 bebês com SD por ano. As peculiaridades no desenvolvimento dessas crianças exigem que os pais desenvolvam habilidades especiais para contemplarem cada necessidade diferenciada da criança que poderia passar despercebida ou facilmente captada nas crianças sem nenhum tipo de Síndrome. A interação com os pais, agentes primordiais nesse processo, é essencial, inclusive, para minimizar os efeitos da Síndrome; porém pouco se tem estudado sobre a vivência dos cuidadores no encontro com a criança. Nesse contexto, objetivou-se compreender como se deu a construção do \"ser pai/mãe\" de uma criança com Síndrome de Down, desde o diagnóstico da Síndrome de Down até o momento da entrevista. Para tanto se utilizou o método clínico-qualitativo, através do estudo de caso coletivo. Como referencial teórico para análise a psicanálise winnicottiana. Realizou-se entrevistas semiabertas, individuais, face a face, com 5 casais de pais de crianças com Síndrome de Down, com idade de 7 a 10 anos. As entrevistas foram audiogravadas e transcritas na íntegra. Os resultados foram apresentados através de quatro categorias, a saber: \"Amor a segunda vista\" aborda o processo interativo inicial, os pais relatam o choque ao receber a notícia da Síndrome e os desafios na readaptação dos sonhos e expectativas. \"O ambiente lugar e não lugar\" descreve como os pais perceberam os diversos ambientes, alguns hostis que não contribuíram para que os mesmos pudessem ser acolhidos e potencializados na tarefa de cuidar desse filho, ressaltando que a ausência de suporte acarreta em sobrecarga na percepção dos pais; Por outro lado, consideram que o maior suporte que tiveram foi do parceiro, o que auxiliou na aceitação da notícia e em encontrar possibilidades de cuidado. \"Encontro Suficientemente Bom\" coloca em relevo a descrição dos participantes de que há maneiras diferentes de ajustar o cuidado na interação com seus filhos que perpassaram tanto por incômodos, quanto pela possibilidade do gesto criativo que se apresenta em atividades triviais e importantes do desenvolvimento. \"Trans-formações\" destaca às mudanças que os pais vivenciam ao poder se aproximar do filho \"real\", assumindo novos papéis, transformando-se através da abertura ao novo do outro e de si mesmos. A partir desse estudo pôde-se compreender que a relação vai se constituindo e se regulando reciprocamente, os cuidados precisam ser ajustados à demanda e possibilidade do outro. Compreendeu-se, ainda, que criatividade é a característica que permite que os pais sejam espontâneoss e recontruam significados e modos de interagir pessoais com seus filhos. Os pais entrevistados indicam que quanto mais lento e exigente o cuidado com seus filhos com Síndrome de Down, mais possibilidades de encontros surgem, e quando esses podem ser suficientemente bons, são \"trans-formadores\" para ambos: pais e filho. Ampliou-se a compreensão quanto a necessidade de acolhimento às angústias vividas, e suporte para o processo da construção da parentalidade.

How I Learned to Stop Worrying and Love the Bits: Archival Motivation in the Digital Age

Why do people become archivists? Historically (and anecdotally) it was a deep love of musty, old records that drew people to the profession. While there have been many other motivating forces that inspired would-be archivists, it is most often that one hears of people seeking jobs in archives for love of “the stuff,” as evidenced in Kate Thiemer’s blog post, Honest tips for wannabe archivists (2012). As a result of the continually advancing presence of digitized and born digital archival collections, the physical nature of archival “stuff” is changing. While there remains the physical imprint of digital information on floppy disks, CDs, DVDs, hard drives, and old computers; the aspects of these physical artifacts might not evoke the same visceral pull to the profession as musty, raspy, paper-based documents. In light of this shift in physical presentation of information, we are faced with the question: how does love of archival “stuff” translate to work in digital archives? What is and/or will be the pull to become a digital archivist? To answer these questions, we will perform a survey-based study where we will invite archivists who work with both traditional and digital archival material to answer questions related to the aspects of their work that inspired or motivated them to join the profession. What motivates people to become archivists? What aspects of digital archives do or can potentially motivate people to seek out a career as an archivist? What, if any, motivational factors for becoming a traditional archivist are the same as those for becoming a digital archivist? What, if any, motivational factors for becoming a traditional archivist are different from those for becoming a digital archivist? By answering these questions, we hope to expand the archival discussion on what it means to be an archivist in the digital age. What compelling intrinsic, evidential, or informational values are present in digital archival content that will draw professionals to the field? Are there other values inherent in digital content that are currently unexplored? In our poster, we will present our discussion of the topic, our survey design, and results we have at the time of the Institute. Thiemer, K. (2012). Honest tips for wannabe archivists. Archivesnext blog. Retrieved from http://www.archivesnext.com/?p=2849

A metasynthesis of qualitative studies regarding opinions and perceptions about barriers and determinants of health services’ accessibility in economic migrants

Background: Access to health services is an important health determinant. New research in health equity is required, especially amongst economic migrants from developing countries. Studies conducted on the use of health services by migrant populations highlight existing gaps in understanding which factors affect access to these services from a qualitative perspective. We aim to describe the views of the migrants regarding barriers and determinants of access to health services in the international literature (1997–2011). Methods: A systematic review was conducted for Qualitative research papers (English/Spanish) published in 13 electronic databases. A selection of articles that accomplished the inclusion criteria and a quality evaluation of the studies were carried out. The findings of the selected studies were synthesised by means of metasynthesis using different analysis categories according to Andersen’s conceptual framework of access and use of health services and by incorporating other emergent categories. Results: We located 3,025 titles, 36 studies achieved the inclusion criteria. After quality evaluation, 28 articles were definitively synthesised. 12 studies (46.2%) were carried out in the U.S and 11 studies (42.3%) dealt with primary care services. The participating population varied depending mainly on type of host country. Barriers were described, such as the lack of communication between health services providers and migrants, due to idiomatic difficulties and cultural differences. Other barriers were linked to the economic system, the health service characteristics and the legislation in each country. This situation has consequences for the lack of health control by migrants and their social vulnerability. Conclusions: Economic migrants faced individual and structural barriers to the health services in host countries, especially those with undocumented situation and those experimented idiomatic difficulties. Strategies to improve the structures of health systems and social policies are needed.

La promoción de la música indie en la era digital en España

Estudio cualitativo comparativo sobre la gestión de la imagen corporativa de dos bandas indie españolas en período de lanzamiento de nuevo material discográfico. Se hace un recorrido por los orígenes del término indie en España y a nivel global. También se analiza si éste debe ser considerado un género o no. Mediante la observación, se establece un listado de prácticas promocionales presente en la escena musical independiente español y se compara la presencia online de dos de las bandas más reconocidas de este ámbito, Vetusta Morla y Love of Lesbian, para lo cual se analizan sus perfiles en las principales redes sociales y cinco medios de comunicación en línea de referencia. Un aspecto importante durante el estudio es dirimir si existe una diferencia a la hora de realizar acciones promocionales por parte de los grupos que publican en sellos independientes respecto de las que lo hacen en discográficas multinacionales.

Detailing for a research centre in Antarctica: An experiment to force students to be creative instead of copying standard solutions

In order to equip architecture students with ambitious detail designing ability, related courses of the architecture programs should deal with subjects which are rather rare and unusual for real life practices in order to prevent students copying standard details. In 2015 an innovative project brief has been given to architecture students of Istanbul Technical University. The scenario given in the brief is to design a research station for the first group of Turkish scientist, to be built in one of the coldest and most arid regions on earth; the Antarctica. The performance requirements given in the brief were determined to prevent the students from copying details from any kind of resources as the total number of details generated in real life for those conditions are very limited and specific. The method used has demonstrated a great success and creative detail solutions were generated by the students. In the paper, the innovative coursework brief for bettering the detail design ability of architecture students is explained and the output of the studio is presented.

Spatial Distribution of Marine Epibenthic Communities in the Hola Trough (Vesterålen, Northern Norway)

The Lofoten-Vesterålen marine shelf is one of the most geologically diverse coast and offshore margin areas in Norway. This leads to huge heterogeneity in marine environments, and often high biodiversity. However, little is known yet about the benthic communities in this region. Within the ARCTOS LoVe MarineEco project the epibenthic communities of the Hola trough (Vesterålen) are analysed to give a first description of their spatial distribution. In this trough both a complex hydrodynamic system and varied topographic submarine elements occur. Trawling samples were collected for two different approaches: one in a meso-scale and another in a small-scale. For the broad scale a transect consisting in three stations was developed, while for the fine scale a small area on a sand wave field, consisting in five stations called HolaBox, was sampled. All organisms were intended to be identified to species level and colonial fauna was discarded for the analysis. Different diversity indexes were assessed (Shannon index (H’) and Pielou’s eveness (J’)). Clustering and nMDS analyses identified four statistically significant groups in terms of abundance (ind./100m2). A total amount of 211 different taxa were found within all stations. The more outer part of the transect (close to the shelf edge) presented a huge abundance of organisms and was dominated by the hemi sessile tube-builder polychaetes Nothria conchylega and Eunice dubitata and the sea urchin Gacilechinus acutus, while the more inner parts presented less abundance of individuals. Probably some upwelling produced by the Norwegian Atlantic Current (NWAC) is influencing the shelf edge increasing the primary production and, therefore, enriching the seafloor in this region. The sand wave field presented two different groups with few amount of individuals. Small-scale variability could be produced by the high heterogeneity within the different types of sand waves, while the scarce abundance of animals can be produced by the permanent changing environment that movable sand waves produce. Here more active and mobile fauna was found such as brittle stars and hermit crabs (among others). Finally, a fourth group was found in the most inner station of the transect, laying on a ridge in the central part of the trough. This station, with coarse substrate, was mainly dominated again by brittle stars and sea urchins. We can conclude that this is a really heterogeneous trough in environments and therefore in communities (even in a local scale). More detailed studies that focus in the local environmental drivers have to be carried out to get an integrated understanding of the structure of benthic communities in this system.

Need To Be Adored

Faced with a diagnosis of multiple sclerosis, I began with the objective of discovering methods for creating art that were still accessible to me. Along the way, I encountered others who had travelled this road before me. Their experiences led me to examine, not only my art, but also my political orientations, my love obligations and my transitioning self. In my varied art pieces, I conjure something from diverse sources and different worldviews, including contemporary feminist performance art and disability cultural theory. My thesis is a project. I make things: puppets, videos and performances, which included the exhibition, Need to be Adored (2014), staged in the digital media lab of the Isabel Bader Centre for the Performing Arts in Kingston, Ontario, Canada. The exhibition introduced thirteen of my puppets and a thirty-two-minute looped video. Following the exhibition, I put the puppets away and spent two years reading. Finally, taking my inspiration from Carolyn Ellis’s The Autoethnographic I (Ellis 2004), I turned my processes into words. I wrote out my experiences. I created an alternative text of my identity from an able-bodied cis-identified woman into a disabled trans-feminist artist academic. The writing required an uncomfortably intimate examination of my life. Nothing less than complete honesty would allow me to understand my new location. The resulting text is a lyrical and sometimes whimsical flow of consciousness that invites the reader to imagine what it might be like to engage in such a candid review of everything one holds close to one’s heart. Contained within are all my identities. In this text I let some out. This is a story of unsettling. I am working on my art practices, creating a cast of characters from cloth. Puppets. El becomes the exulted main character of a fictional accounting. She uncovers her queer roots and begins to see that she is at the centre of a very strange geography. Her desire to make film is revealed as she re-remembers her childhood through a disability lens.