Calidad de vida en personas con hemofilia: una revisión de la literatura

Introducción: La hemofilia es una enfermedad poco frecuente; no obstante, los avances en los tratamientos de pacientes hemofílicos en las últimas décadas han generado cambios en su calidad de vida. Esto ha motivado el desarrollo de múltiples investigaciones al respecto. Objetivo: Revisar la literatura sobre la calidad de vida en el paciente hemofílico, producida en el periodo 2008-2012. Método: Se consultaron algunas bases de datos científicas utilizando como palabras clave “hemofilia” y “calidad de vida”. Se recopiló la información encontrada y se organizó según los objetivos propuestos en “factores negativos” y “factores protectores” de la calidad de vida a nivel fisiológico, psicosocial y cultural; “instrumentos para la evaluación de la calidad de vida” a nivel específico y general; y antecedentes empíricos de los últimos cinco años en los que se evaluara la calidad de vida o se realizara alguna intervención en la misma. Resultados: En general la información disponible sobre el comportamiento epidemiológico de la hemofilia es limitada. El interés por factores protectores y negativos es principalmente de tipo fisiológico, aunque se encontraron factores de tipo psicosocial y cultural, lo que indica la importancia de profundizar en esta temática. Existen pocos instrumentos especializados para la evaluación de la calidad de vida en hemofílicos. La evidencia empírica se centra en la evaluación. Conclusión: El estudio de la calidad de vida en pacientes hemofílicos amerita ser abordado de manera interdisciplinaria.

Motivação na sala de aula de adolescentes com dificuldades de adaptação

A presente investigação, desenvolvida com três estudos de caso, tem como objectivo reflectir sobre a motivação, na sala de aula, de adolescentes com dificuldades de adaptação, assim como, a influência que as Artes Visuais podem ter no processo ensino-aprendizagem possibilitando aos alunos superar dificuldades, agindo e transformando o mundo que os rodeia. É durante a adolescência que os jovens formam a sua personalidade e individualidade e é, também, o período em que as drogas, a sexualidade e a violência física se fazem mais presentes. Tais perturbações têm um impacto muito grande na saúde física e mental do adolescente, deixando marcas no seu desenvolvimento e danos que podem persistir por toda vida. Neste sentido, as práticas de ensino dos professores e as relações interpessoais com os alunos são apontados como factores potencialmente poderosos, que influenciam o adolescente na motivação e no desempenho (Arends, 1995). São propostas um conjunto de estratégias integradas no processo de ensino/aprendizagem, que fomentem o desenvolvimento da própria motivação dos alunos, ajudando-os a construir objectivos ou a adoptar os objectivos propostos, ajustando as actividades de sala de aula em estruturas estratégicas, de meios para atingir os fins, sustentando não só a motivação para as tarefas escolares, como também promovendo nos alunos o desenvolvimento da própria motivação e a consequente capacidade de orientação para a vida em sociedade (Lemos, 2005). As estratégias têm como base a educação artística, em particular a experimentação, através da absorção do sentir, pensar e agir, construindo um conjunto de saberes e cultivando talentos. Desta forma, os alunos descobrem como maximizar as suas capacidades, desenvolvendo a autoconfiança, o espírito crítico e a livre iniciativa, construindo de forma segura a sua personalidade (Fowler, 1996).

Communities of practice in construction case study organisations: questions and insights

Purpose – At the heart of knowledge management (KM) are the people – an organisation's important knowledge asset. Although this is widely acknowledged, businesses seldom understand this axiom in terms of the communities through which individuals develop and share the capacity to create and use knowledge. It is the collective learning that takes place within the social systems, i.e. communities of practice (CoP) that are of particular significance to an organisation from a KM perspective. This paper aims to review, critique, and raise some pertinent questions on the role of CoPs; and with the help of case studies shed light on the “goings-on” in construction practices. Design/methodology/approach – After critically reviewing the literature on CoPs and querying some underlying assertions, this research investigates how these issues are addressed in practice. A case study approach is adopted. Three organisations operating in the construction sector are interviewed for the purpose of this paper. Findings – Case study findings highlight the potential challenges and benefits of CoPs to a construction organisation, the role they play in generating and delivering value to the organisation and their contribution towards the collective organisational intelligence. From the findings, it is clear that the question is not whether communities exist within organisations, but how they deliver value to the organisation. From an organisational perspective, the key challenge is to provide an environment that is conducive to developing and nurturing such communities as opposed to merely creating them. Practical implications – Challenges and benefits demonstrated through the case studies should be taken in context. The findings are not intended to be prescriptive in nature, but are intentionally descriptive to provide contextual data that allow readers to draw their own inferences in the context of their organisations. They should be applied taking into account an organisation's unique characteristics and differentiators, the dynamics of the environment in which it operates and the culture it harbours within. Originality/value – Investigating the role of CoPs in the context of case study construction organisations forms the prime focus of this paper.

Teachers as researchers and teachers as software developers: how use-case analysis helps build better educational software

A series of government initiatives has raised both the profile of ICT in the curriculum and the expectation that high quality teaching and learning resources will be accessible across electronic networks. In order for e-learning resources such as websites to have the maximum educational impact, teachers need to be involved in their design and development. Use-case analysis provides a means of defining user requirements and other constraints in such a way that software developers can produce e-learning resources which reflect teachers' professional knowledge and support their classroom practice. It has some features in common with the participatory action research used to develop other aspects of classroom practice. Two case-studies are presented: one involves the development of an on-line resource centred on transcripts of original historical documents; the other describes how 'Learning how to Learn', a major, distributed research project funded under the ESRC Teaching and Learning Research Programme is using use-case analysis to develop web resources and services.

Teachers’ voices about being a teacher: comparative studies in England, Finland and Sweden

The aim of the article is to present and discuss a study in which Finnish, English and Swedish teachers and student teachers described the implications of being a teacher. It is cross-national and consists of multiple case studies. Data were collected through twenty-four focus group dialogues, and 110 teachers/student teachers participated in the study. According to the study, we have found that teachers and student teachers in all three countries promoted pupils’ development of critical thinking, which is another way of saying that they focused on ‘the attitudes and values’ aspect of citizenship education; however, this was most evident in the Finnish and the Swedish focus groups. In England there is a subject emphasis to the professional role, the three countries ranked the topics (the pupils; the subject; the organization; the society; teacher identity; parents) equally, in Finland the teacher role did not appear to be as post modern as in the two other countries.

Case study on the whole life carbon cycle in buildings

Global temperatures are expected to rise by between 1.1 and 6.4oC this century, depending, to a large extent, on the amount of carbon we emit to the atmosphere from now onwards. This warming is expected to have very negative effects on many peoples and ecosystems and, therefore, minimising our carbon emissions is a priority. Buildings are estimated to be responsible for around 50% of carbon emissions in the UK. Potential reductions involve both operational emissions, produced during use, and embodied emissions, produced during manufacture of materials and components, and during construction, refurbishments and demolition. To date the major effort has focused on reducing the, apparently, larger operational element, which is more readily quantifiable and reduction measures are relatively straightforward to identify and implement. Various studies have compared the magnitude of embodied and operational emissions, but have shown considerable variation in the relative values. This illustrates the difficulties in quantifying embodied, as it requires a detailed knowledge of the processes involved in the different life cycle phases, and requires the use of consistent system boundaries. However, other studies have established the interaction between operational and embodied, which demonstrates the importance of considering both elements together in order to maximise potential reductions. This is borne out in statements from both the Intergovernmental Panel on Climate Change and The Low Carbon Construction Innovation and Growth Team of the UK Government. In terms of meeting the 2020 and 2050 timeframes for carbon reductions it appears to be equally, if not more, important to consider early embodied carbon reductions, rather than just future operational reductions. Future decarbonisation of energy supply and more efficient lighting and M&E equipment installed in future refits is likely to significantly reduce operational emissions, lending further weight to this argument. A method of discounting to evaluate the present value of future carbon emissions would allow more realistic comparisons to be made on the relative importance of the embodied and operational elements. This paper describes the results of case studies on carbon emissions over the whole lifecycle of three buildings in the UK, compares four available software packages for determining embodied carbon and suggests a method of carbon discounting to obtain present values for future emissions. These form the initial stages of a research project aimed at producing information on embodied carbon for different types of building, components and forms of construction, in a simplified form, which can be readily used by building designers in optimising building design in terms of minimising overall carbon emissions. Keywords: Embodied carbon; carbon emission; building; operational carbon.

An introduction to television studies. 3rd edition.

This is a comprehensive textbook for students of Television Studies, now updated for its third edition. The book provides students with a framework for understanding the key concepts and main approaches to Television Studies, including audience research, television history and broadcasting policy, and the analytical study of individual programmes. The book includes a glossary of key terms used in the television industry and in the academic study of television, there are suggestions for further reading at the end of each chapter, and chapters include suggested activities for use in class or as assignments. The case studies in the book include analysis of advertisements, approaches to news reporting, television scheduling, and challenges to television in new contexts of viewing on computers and mobile devices. The topics of individual chapters are: studying television, television histories, television cultures, television texts and narratives, television genres and formats, television production, television quality and value, television realities and representation, television censorship and regulation, television audiences, and the likely future for television.

The effectiveness of botanic garden collections in supporting plant conservation: a European case study

Europe has the greatest concentration of botanic gardens in the world, they cultivate extensive collections of plants that include samples of European threatened plant species. This study looks at the effectiveness of these collections in supporting species conservation. A three part study is presented: (1) the results of a survey and assessment of threatened plants in botanic gardens, as defined by the Bern Convention; (2) case studies illustrating current issues in the ex situ management of European threatened plant species; and (3) presentation of policy recommendations on further improving botanic garden contributions to European plant conservation. The survey indicated that of 119 European botanic gardens in 29 European countries, 105 are cultivating 308 of the 573 threatened plant species listed by the Bern Convention. The survey identified 25 botanic gardens in 14 countries undertaking 51 conservation projects focused on 27 Bern listed species. In particular this survey has established that the majority of taxa are held in a small number of collections, dominated by non-wild origin accessions, and are not adequately documented. The majority of specimens in botanic gardens are cultivated out of the range country and not contributing to a specific conservation project. We review the genetic representation and documentation of origin in collections. Existing plant collections contain representatives of populations, now lost in the wild and maintain samples of at least nine European plant taxa identified as 'Extinct in the Wild'. However, inadequate standards of record keeping has compromised the conservation value of many collections. We highlight the dangers of hybridisation and disease in ex situ collections. The results suggest that botanic garden collections are skewed towards horticulturally robust and ornamental species and do not fully reflect priorities as defined by the Bern Convention. Recognising the limitations of traditional botanic garden collections we propose that botanic gardens more effectively utilise their two core competencies, namely scientific horticulture and public display and interpretation. The unique horticultural skills resident in European botanic gardens could be more effectively utilised through the application of horticulture to the management of wild populations.

Case study part 1: how to calculate appropriate deterministic long-term toxicity to exposure rates (TERs) for birds and mammals

In the European Union, first-tier assessment of the long-term risk to birds and mammals from pesticides is based on calculation of a deterministic long-term toxicity/exposure ratio(TERlt). The ratio is developed from generic herbivores and insectivores and applied to all species. This paper describes two case studies that implement proposed improvements to the way long-term risk is assessed. These refined methods require calculation of a TER for each of five identified phases of reproduction (phase-specific TERs) and use of adjusted No Observed Effect Levels (NOELs)to incorporate variation in species sensitivity to pesticides. They also involve progressive refinement of the exposure estimate so that it applies to particular species, rather than generic indicators, and relates spraying date to onset of reproduction. The effect of using these new methods on the assessment of risk is described. Each refinement did not necessarily alter the calculated TER value in a way that was either predictable or consistent across both case studies. However, use of adjusted NOELs always reduced TERs, and relating spraying date to onset of reproduction increased most phase-specific TERs. The case studies suggested that the current first-tier TERlt assessment may underestimate risk in some circumstances and that phase-specific assessments can help identify appropriate risk-reduction measures. The way in which deterministic phase-specific assessments can currently be implemented to enhance first-tier assessment is outlined.

Responsible tourism and sustainability: the case of Kumarakom in Kerala, India

This paper discusses the notion of ‘responsible tourism’ and its current use within the tourism literature. We argue that the concept as used currently means everything and therefore adds nothing to the conceptual terrain of tourism trends and nomenclatures. We then introduce our own understanding of the concept arguing that while responsible tourism is linked to sustainability initiatives such as alternative tourism, ecotourism, ethical tourism, green tourism, soft tourism, pro-poor tourism, geo-tourism, integrated tourism, community-based tourism, etc it also demarcates an analytical realm of its own. We suggest that the practical use of the term in areas where it has been adopted (such as South Africa and Kerala for instance) suggests a rather restricted use. We identified this realm as the tourism sector-specific manifestation of the corporate social responsibility (CSR) agenda. Following Flyvberg's [(2006). Five misunderstandings about case-study research. Qualitative Inquiry, 12(2), 219–245] call for exemplars and paradigmatic case studies to advance knowledge in a particular domain, the responsible tourism initiative in Kumarakon, Kerala, is presented. Discussion of the case study traces the particular governance context of Kerala and the position of tourism in the state economy. The responsible tourism initiatives at the state level and local level are then described highlighting the ‘how’ of the implementation and the impact that it has produced. Generic, non-prescriptive principles that could be said to be necessary in some form for the successful translation of responsible tourism principles to practices are then identified. Such an approach is contrasted with one that places faith in the voluntary adoption of ‘responsible’ practices by the private sector on its own. It is argued that responsible tourism can make a contribution to practice provided the conceptual terrain is delineated against other forms of tourism and if research within the terrain can unpack the particular forms of challenges that are thrown up by the delineation itself.

Rights, symbolic violence and the micro-politics of the rural: the case of the Parish Paths Partnership scheme

In this paper microlevel politics and conflict associated with social and economic change in the countryside and linked changes in rural governance are explored with a focus upon research carried out on a recent rural policy initiative aimed at local 'empowerment'. This acts as a touchstone for a wider theoretical discussion. The paper is theorised within a conceptual framework derived and extended from the work of Pierre Bourdieu and others in order to explore case studies of the English Countryside Commission's Parish Paths Partnership scheme. The micropolitics involved with this scheme are examined and used to highlight more general issues raised by increased 'parish empowerment' in the 'postrural'.

An illustrative case study of precocious reading ability

This is a longitudinal case study of a child who taught herself to read before she went to school. This case study is drawn from a wider study of a group of precocious readers, all of whom had received no explicit instruction, but who had had positive literacy experiences in their homes. The subject of this study was able to read fluently at the age of 5 years and 4 months. Her reading was at least 5 years ahead of her chronological age and her spelling was 4 years ahead. Her reading speed was also very proficient. Moreover, tests indicated that her pseudoword reading was highly accurate and that she was highly proficient on a series of measures of phonemic awareness. Her performance was also assessed at the ages of 6, 7, and 11 years. She continued to show high levels of ability in all aspects of literacy. This study contrasts with recent case studies on very precocious readers who showed poor levels of phonological awareness and who were unable to spell at an early age.

Building from scratch a marketing services giant by acquisition: case study and interview with Sir Martin Sorrell, Chief Executive of WPP

Purpose – Mergers and acquisitions are among the most intensely used strategic decisions. Yet research by both academics and consulting groups suggests that many mergers and acquisitions fail to add value. On the other hand there are many companies that successfully use mergers and acquisition to grow and add shareholder value. One such company is WPP. The aim of this paper is to explore why WPP has been successful in its acquisition strategy while so many other companies fail. Design/methodology/approach – The paper draws on documentary evidence and a semi-structured interview with Sir Martin Sorrell – Chief Executive and founder of WPP. Research limitations/implications – The case study offers a unique insight into thinking of a successful acquirer and sheds light on how mergers and acquisitions are managed by WPP. However, because of its design the findings are not generalisable. Originality/value – This case study sheds light on how mergers and acquisitions can be used to create a £9 billion company from a standing start. Furthermore, very few case studies offer insight into the thinking of entrepreneurial Chief Executives who established the business, grew it to become the largest and most profitable marketing services company in the world and engineered close to 300 acquisitions.

Successful strategy making in Bupa not-for-profit provident: a case study and interview with Mr Ray King, chief executive of Bupa

Purpose – The focus of extant strategy literature is on for-profit organisations and within these group public organisations. There are other forms of organisations and following the deep recession of 2008 there is greater interest in other forms of organisation. In this case study and interview the aim is to examine strategy, strategic decisions and strategic management of a not-for-profit provident. Design/methodology/approach – The paper draws on documentary evidence and a semi-structured interview with Ray King, chief executive of Bupa. The perspective of CEO is key in strategy and such perspectives are relatively rarer. Findings – Bupa invests its surplus to provide better healthcare. Free from the pressures of quarterly reporting and shareholders it can pursue long-term value creation for members rather than short-term surpluses. Research limitations/implications – The case study and interview offers a unique insight into strategy-making within a successful mutual provident that has grown organically and externally becoming an international leader in health insurance. Originality/value – This case study sheds light on strategy-making within a not-for-profit provident that has diversified and grown significantly over the past six decades. Furthermore, very few case studies offer insight into the thinking of a chief executive who has successfully managed a business in a turbulent environment.

John Lewis Partnership lessons in logical incrementalism and organic growth: a case study and interview with the Chairman, Mr Charlie Mayfield

Purpose – The purpose of this paper is to demonstrate how strategy is developed and implemented in an organisation with an unusual ownership model. Partnerships are not a prevalent form of ownership but as this case demonstrates they can be extremely effective. Furthermore this case demonstrates how logical incrementalism can be used to implement major strategic decisions. Design/methodology/approach – The paper draws on company documentary evidence and a semi-structured interview with Mr Charlie Mayfield, Chairman of John Lewis Partnership. A chairman has a helicopter view of business whose perspectives are rarely captured by strategy researchers. This case study offers an insight into strategic thinking of a chairman and chief executive of a successful company. Research limitations/implications – The case study and interview offer a unique insight into the rationale behind strategic decisions within a successful partnership that has grown organically in a highly competitive retail market without high gearing. Originality/value – This case study sheds light on strategic moves within partnership. Furthermore, very few case studies offer insight into the thinking of a chief executive who has successfully managed a business in a turbulent environment.