Quality of life in children and adolescents with congenital heart disease

Purpose: The Quality of life is currently a major topic discussed in our society. The World Health Organization (WHO) has been developing a unifying and transcultural definition of QOL. They considered it as 'the individual's perception of his or her position in life, within the cultural context and value system he or she lives in, and in relation to his or her goals, expectations, parameters and social relations. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, level of independence, social relationships and their relationship to salient features of their environment (WHOQOL, 1997, p. 1). Congenital heart disease is the most prevalent congenital disease in Portugal. Despite the advances in cardiac treatment and an early correct diagnosis that could increase the survival of children with congenital heart disease, this condition influences the quality of life of children, adolescents and their parents. Knowing the perception of quality of life could help healthcare professionals, nurses in particular, providing suited care to the needs of these families, establishing priorities in their interventions, sensing predictors of a poor quality of life, promoting adherence to treatment and boosting compliance with treatment, and fostering greater satisfaction for these children, adolescents and their parents. 'As part of broader research and with the awareness that the chronic conditions could impact the quality of life and considering that all advances on treating congenital cardiac diseases we have defined this main objective: To determine the quality of life in children and adolescents with congenital heart disease (CHD) and the perception of their parents, as well as factors that influence it. Methods: It is a quantitative, descriptive and correlational research. The data collection tool was a questionnaire, which consisted of four parts: socio-demographic and educational characteristics, clinical characteristics, and quality of life, obtained using the Pediatric Cardiac Quality of Life Inventory ? PCQLI - (Marino, Tomlinson, Wernovsky, Drotar , Newburger, Mahony et al., 2010) translated into Portuguese. Data collection took place between February and July 2014, in compliance with ethical research guidelines. The sample comprised 59 children, 59 parents of children, 80 adolescents and 80 parents of adolescents. Results: The results indicated that children, adolescents, and their parents have high level of perceived health. The results are similar in all groups: children and parents and adolescents and parents. In the group of children, we observed the classification of "Good" in 66.10%, followed by the "Very Good" at 18.65% and "fair" in 15.25% of cases. The parents of the children responded in about half the cases that the health of their children was "good" (50.85%), "very good" in 30.51% "fair" in 11.86% and "Excellent "in 6.78%. In turn, the group of adolescents can be seen that 46.25% rate their health as "good", 32.50% as "very good", 16.25% as "Average" and 5% as "Excellent". Parents of teenagers classify the health of their children mostly as "good" in 42.50%, 31.25% as "very good", 20% as "fair" and 6.25% as "excellent". To point out that none of the respondents pointed out the option of a health status "Bad". About the quality of life, in general the results indicated that children, adolescents and their parents have high levels of quality of life, and that perceptions of parents and children are similar. Only in the children?s group (8 to 12 years old), was no influence of socio-demographic, school or clinical variables on quality of life observed. For adolescents (13 to 18 years old), school, special education, school retention, the age of diagnosis of congenital heart disease, cardiac catheterization and surgical intervention influenced their quality of life. Perception of quality of life of parents of children and of adolescents was influenced by socio-demographic and clinical variables. The results partly agree with the literature in this field. About the influence of some variables: The perception of quality of life expressed by children and adolescents with congenital heart disease and parents are related, with statistical significance. There were no statistically significant relationships between the quality of life of children and adolescents and their age, gender or socioeconomic status. Adolescents differ statistically significant between their quality of life and their education, the frequency of special education and the existence of grade retention. The severity of heart disease, the number of cardiac catheterizations or surgery and the presence of other health disorders are unrelated to the quality of life of children and adolescents. Adolescents revealed that the level of quality of life is influenced by the age of diagnosis of CHD by cardiac catheterization and surgery. For parents of children and adolescents gender and their education don?t influence their perception of quality of life. Only the socioeconomic status of parents of teens has statistically significant difference to quality of life. Parents of children and adolescents do not show statistically significant relationship between the perceived level of quality of life and severity of disease, age at diagnosis, the number of surgical interventions and the existence of other health disorders. There is a relationship of statistical significance between cardiac catheterization and the perceived quality of life by parents of adolescents; between the number of cardiac catheterizations and the perception of quality of life of parents of children; and between performing surgery and the perception of parents of children and adolescents. Conclusion: To analyze the quality of life of children and adolescents with CHD must be a key focus of attention in caring for this population, allowing the identification of individual differences, interests, preferences, and prevent potential problems. The knowledge acquired along with clinical experience contributes to improve the quality of life of children and families, facilitating their growth, psycho-emotional development and social integration. Nevertheless, the reading and interpretation of these results must be prudent and cautious, there are limitations to this research, including: the use of a range of specific quality of life for the Congenital heart disease in children, adolescents, and parents but whose validation process could not be completed in this study; the low prevalence of severe conditions in our sample; the absence of national studies to enable comparison with the results obtained. We intend to continue the process of validation of instrument and enlarge the research to Lisbon and Oporto, other major centers where the cardiac conditions can be treated.

Exploring the transformative potential of Bluetooth beacons in higher education

The growing ubiquity of smartphones and tablet devices integrated into personal, social and professional life, facilitated by expansive communication networks globally, has the potential to disrupt higher education. Academics and students are considering the future possibilities of exploiting these tools and utilising networks to consolidate and expand knowledge, enhancing learning gain. Bluetooth beacon technology has been developed by both Apple and Google as a way to situate digital information within physical spaces, and this paper reflects on a beacon intervention in a contemporary art school in higher education conducted by the authors intended to develop a situated community of practice in Art & Design. The paper describes the project, including relevant theoretical foundations and background to the beacon technology, with regards to the potential of using these devices to create a connected learning community by enhancing learning and facilitating knowledge creation in a borderless learning space.

La gestione delle cure oncologiche in Emilia-Romagna al tempo del COVID-19 tra lavoro invisibile e nuove pratiche di cura

L’insorgere della pandemia da COVID-19 ha comportato una pesante riorganizzazione delle strutture ospedaliere e lo stesso sistema delle cure oncologiche è stato ripensato cercando di garantire, da un lato, la sicurezza dei pazienti e del personale sanitario e, dall’altro, la continuità delle cure. Il progetto analizza l’impatto di questa riorganizzazione sulle traiettorie di malattia dei pazienti oncologici e sul lavoro di cura dei diversi attori coinvolti nella definizione di queste traiettorie. La ricerca, focalizzata sul contesto ospedaliero emiliano-romagnolo, si è svolta tramite la realizzazione di interviste qualitative a personale sanitario ospedaliero, associazioni di volontariato, pazienti e caregiver. La gestione del rischio Covid ha comportato un consistente impegno in termini di safety work da parte del personale sanitario. Inoltre, le limitazioni degli accessi agli ambienti ospedalieri, imposte come misure di sicurezza, hanno comportato l’esclusione di familiari e associazioni di volontariato dagli ospedali e, di conseguenza, una maggiore solitudine del paziente in tutte le fasi del percorso di cura. L’assistenza fornita da queste figure ricomprende una componente di “lavoro invisibile” che la situazione pandemica ha permesso di far emergere. Infatti, i familiari supportano indirettamente e informalmente il lavoro del personale sanitario all’interno dello stesso ambiente ospedaliero. I professionisti intervistati hanno riconosciuto il venir meno di questo supporto. La risposta del personale ospedaliero, e infermieristico in particolare, si è articolata in due direzioni al fine di sopperire a queste mancanze: da un lato, incrementando la componente di sentimental work, e quindi di supporto emotivo ai pazienti; dall’altro, attraverso buone pratiche orientate a rispondere ai bisogni dei pazienti, intesi non solo in senso biomedico, ma anche psicologico e relazionale. Possiamo quindi concludere che, sotto certi aspetti, la pandemia è stata contrastata con una maggiore umanizzazione delle cure oncologiche e una maggiore attenzione ai bisogni dei pazienti intesi nella loro interezza e complessità.

Pedagogia da roda ginástica (alemã) : análise da proposta metodológica desenvolvida no clube Bayer Leverkusen na Alemanha

Universidade Estadual de Campinas. Faculdade de Educação Física

A concepção estratégico-tática no handebol : implicações para a formação de jogadores inteligentes

Universidade Estadual de Campinas . Faculdade de Educação Física

Projeto Sol Morumbi - Paulinia : as lembranças da infancia e adolescencia pelos caminhos da Educação Fisica

Universidade Estadual de Campinas . Faculdade de Educação Fisica

Mental health nursing standards and practice indicators for Australia: a review of current literature

There are many changes and challenges facing the mental health care professional working in Australia in the 21st Century. Given the significance of their number and the considerable extent to which care is delivered by them, mental health nurses in particular must be at the forefront of the movement to enhance and improve mental health care. Mental health nurses in Australia must not only keep up with the changes, we should be setting the pace for others across the profession worldwide. The increasingly complex field of mental health nursing demands nurses who are not only equipped to face the challenges but are confident in doing so. Definitive guidelines for practice, clear expectations regarding outcomes and specific means by which to evaluate both practice and outcomes are vital. Strengthening the role and vision of mental health nursing so that there is clarity about both and highlighting core values by which to perform will enable us to become focused on our future and what we can expect to both give to and receive from our chosen profession and how we can, and do, contribute to mental health care. The role of the mental health nurse is undergoing expansion and there are new hurdles to overcome along with the new benefits this brings. To support this, nationally adopted, formalised standards of practice and means by which to measure these, i.e., practice indicators formerly known as clinical indicators, are required. It is important to have national standards and practice indicators because of the variances in the provision of mental health across Australia – different legislation regarding mental health policies and processes, different nursing registration bodies and Nursing Councils, for example – which create additional barriers to cohesion and uniformity. Improvements in the practice of mental health nursing lead to benefits for consumer outcomes as well as the overall quality of mental health care available in Australia. The emphasis on rights-based care, particularly consumer and carer rights, demands evidence-based, up-to-date mental health care delivered by competent, capable professionals. Documented expectations for performance by nurses will provide all involved with yardsticks by which to evaluate outcomes. Flowing on from these benefits are advances in mental health care generally and enhancements to Australia’s reputation and position within the health care arena throughout the world. Currently, the ‘Standards for Practice’ published by the Australian New Zealand College of Mental Health Nurses (ANZCMHN) in 1995 and the practice indicators developed by Skews et al. (2000) provide a less formal guide for mental health nurses working in Australia. While these earlier standards and practice indicators have played some role in supporting mental health nurses they have not been nationally or enthusiastically adopted and there are a multitude of reasons for this. This report reviews the current literature available on practice indicators and standards for practice and describes an evidence-based rationale as to why a review and renewal of these is required and why it is important, not just for mental health nurses but to the field of mental health in general. The term ‘practice indicator’ is used, except where a quotation utilises ‘clinical indicator’, to more accurately reflect the broad spectrum of nursing roles, i.e. not all mental health nursing work involves a clinical role.

Emily Kame Kngwarreye and the undeconstructible space of justice

Selected as part of an anthology featuring best or most representative of 20th century art writing. Other authors in anthology included Benjamin, Greenberg, Krauss, T.j. Clark, Roger Fry, Stuart Hall, etc. Intended as US textbook. My essay featured as part of study day on globalism in art at Tate Modern. Essay itself subject of PhD thesis by Sally Butler of EMSAH and other subsequent commentaries.

Facial Lipoatrophy: Appearances Are Not Deceiving

Lipodystrophy syndrome (LS) has been reported as visible markers that cat? identify HIV status. Changes in body shape are detrimental in terms of psychological welfare and may affect well-being and increase the stigma associated with HIV disease. In the current study, the pychosocial impact of LS was evaluated. A total of 84 HIV-infected patients receiving antiretroviral therapy and exhibiting dyslipidemia were interviewed in an urban hospital setting in Brazil in 2006 using a standardized questionnaire. Of the 84 patients exhibiting dyslipidemia, 40 patients also exhibited body changes, and of these, 25 had facial lipoatrophy. From a psychosocial perspective, patients presenting with facial lipoatrophy reported alterations in self-image and self-esteem and believed that other people noticed their body changes. The results are relevant for nurses who need to be well-prepared to recognize lipodystrophy, to implement nursing interventions including lifestyle changes, and to provide psychosocial support to patients with LS.

The competence of mental health occupational therapists

This research sought to investigate the self-perceived competence of mental health occupational therapists in Queensland. The research is a post-hoc analysis of survey results that formed part of the 1995 Professional Development Strategy for Adult Mental Health Services for the Queensland Health Mental Health Unit. A sample of 55 occupational therapists was compared with other professionals in relation to both general self-efficacy and efficacy in specific competencies. The devised scale for measuring self-efficacy was found to have a high level of internal reliability. The results indicated that the general self-perceived competence of occupational therapists for the whole sample was comparable to that of other professional groups, but that in the community-based sample it was significantly higher than that of social workers or nurses. In addition, occupational therapists in community settings had significantly higher general self-perceived competence than occupational therapists in hospital locations. Greater length of experience in mental health was strongly predictive of higher levels of competence for occupational therapists than for other professionals. The results suggest that occupational therapists have adapted well to the demands of multidisciplinary community practice. The possible reasons for these results, and the implications for competency-based recruitment and training, are presented.

Imagens da escola como mediadoras do processo formativo dos jovens no ensino da arte: diálogos com a história, memória e ambientes intraescolares

Esta pesquisa apresenta as imagens da escola como mediadoras do processo formativo dos jovens no ensino da Arte em diálogo com a história, memória e ambientes intraescolares. Inscreve-se no debate produzido pela linha de pesquisa em Educação e Linguagens. Analisa a formação dos jovens numa turma do terceiro ano do Ensino Médio na Escola Estadual de Ensino Médio “Hunney Everest Piovesan”, localizada no município de Cariacica no Estado do Espírito Santo. O estudo foi realizado em 2013 e tem como objetivo analisar as imagens escolares como mediadoras na formação dos estudantes do Ensino Médio no ensino da Arte em diálogo com a história, memória e ambientes intraescolares. Ao mesmo tempo, por meio de trabalho colaborativo, contribui para (re)construção da história da instituição, significando-a junto aos alunos e comunidade escolar. Por meio de intervenção artística com imagens da escola propõe reflexão crítica, analisando a formação dos jovens no terceiro ano do Ensino Médio. Para compreender os conceitos de mediação e meio social, estabelece um diálogo com as obras de Lev Semenovith Vigotski. A partir dos estudos de Maria Ciavatta e Schütz–Foerste procura entender a mediação imagética e sua dimensão educativa. Dialoga ainda com Frago, Escolano e Buffa, ampliando as reflexões sobre os ambientes intraescolares, dimensionando a imagética desses espaços e o senso de pertencimento à escola a partir da impregnação pela história e memória. A investigação pauta-se nos referenciais do método qualitativo e colaborativo de pesquisa. A produção dos dados contou com o recolhimento e análise documental de um conjunto de fontes primárias e secundárias formadas por livro de registro de funcionários da escola da década de 1970, diários de classe, recortes de jornais, convites de formaturas e registros fotográficos escolares dessa mesma década até a atualidade. Além desses documentos históricos, foram analisadas entrevistas de antigos alunos e questionários dos alunos do terceiro ano do Ensino Médio da instituição. Relata brevemente experiências de curto intercâmbio acadêmico realizado na Universidade de Ancara, na Turquia, com o objetivo de ampliar os horizontes de referência sociocultural, em especial com o contexto educacional do Ensino Médio euroasiático, identificando os espaços de formação dos jovens no contexto turco e suas relações com a educação brasileira. Esta experiência apresentada não integra a análise desta dissertação, mas projeta a discussão para novos estudos. A análise se elabora a partir da triangulação, entre outros, do referencial teórico com o processo de intervenção, produção de dados e no debate acadêmico em diferentes contextos. A partir da caminhada acadêmica permeada pela história e memória, inferimos que as imagens escolares medeiam o processo formativo dos jovens do terceiro ano do Ensino Médio no ensino da Arte. Contribuem para o cultivo da memória escolar, enquanto presença impregnada pela história da instituição, por meio da imagética dos seus ambientes intraescolares. Constatamos ainda que as imagens colaboram para o (re)conhecimento por parte desses sujeitos do seu papel ativo, autônomo e transformador da realidade escolar na qual estão inseridos.

Amadeus, Papa e Greve no Natal

O direito constitucional à greve está consagrado no art. 57º da Constituição. Desde que estejam assegurados os serviços mínimos – indispensáveis às necessidades sociais impreteríveis -, o direito à greve é absolutamente inalienável e não pode ser coarctado por uma qualquer “requisição civil”, em conjugação com o art. 18º/2 da Constituição; The constitutional right to strike is enshrined in art. 57 of the Constitution. Provided they are guaranteed the minimum services - indispensable to essential social needs - the right to strike is absolutely inalienable and can not be inhibited by any "civil requisition", in conjunction with art. 18/2 of the Constitution.

1º DE MAIO e SISTEMA FISCAL

A segurança no emprego está consagrada no art. 53º da CRP: “É garantida aos trabalhadores a segurança no emprego, sendo proibidos os despedimentos sem justa causa ou por motivos políticos ou ideológicos”. É também a celebração dum ambiente de trabalho humano em que sejam consagrados os direitos e deveres fundamentais dos trabalhadores, como o direito e dever à saúde laboral e a uma jornada justa de horas de trabalho, o direito e o dever ao descanso, o direito e o dever a formar família, ter filhos e ter tempo para a mesma, o direito e o dever a fazer o próprio trabalho e executar as diferentes tarefas pelas quais está encarregue. § Job security is enshrined in art. 53 of CRP, "is guaranteed to security workers in employment, the redundancies being prohibited without just cause or for political or ideological reasons." It is also the celebration of a human working environment in which the fundamental rights and duties of workers are enshrined, as the right and duty to labor health and a fair day's working hours, the right and the duty to rest, the right and the duty to form families, have children and take time for it, the right and the duty to do the work itself and perform the different tasks for which it is responsible.

A teoria dos detalhes luminosos de Ezra Pound e a teoria das cores e da vibração de Wassily Kandinsky: novas possibilidade exegéticas e tradutivas

O objectivo deste artigo é aplicar aos Estudos de Tradução Literária o binómio literatura-imagem com origem no Expressionismo alemão e no Vorticismo inglês, optando por um suporte teórico tão seminal quanto a ficcionalidade a que se destinava a expectativa programática dessas vanguardas, nas décadas dez e vinte do passado século. Da poética visual de Wassily Kandinsky, formulada em Über das Geistige in der Kunst - insbesondere in der Malerei [Do Espiritual na Arte](Kandinsky, 1912/1952), falarei da noção de Vibração. Da poética textual de Ezra Pound, exposta em ―I Gather the Limbs of Osiris‖ (1911/12), remeterei para a Teoria dos Detalhes Luminosos. São duas poéticas que, partindo de meios de expressão distintos – a imagem e a palavra, apresentam consideráveis pontos de contacto, no que diz respeito à abordagem produtiva e receptiva do objecto artístico. Ambas suspendem a procura convencional de um sentido na arte e na literatura, reunindo novas possibilidades exegéticas e, por conseguinte, tradutivas: a articulação entre a palavra poética e a imagem, com um amplo leque de possibilidades relativo a modos de estrutura perceptual, que se viriam a revelar proféticos, muito especialmente no que diz respeito à Tradução Artística, seja literária ou intersemiótica.

A arte contemporânea enquanto elemento facilitador da auto valorização dos jovens perante as suas criações artísticas

Dissertação apresentada à Escola Superior de Educação de Lisboa para obtenção de grau de mestre em Educação Artística, na Especialização de Artes Plásticas na Educação