Tracking the reflexivity of the (dis)engaged citizen: some methodological reflections

The relationship between governments and citizens in many contemporary democracies is haunted by uncertainty and sociologists face the task of listening effectively to citizens’ own reflections on this uncertain relationship. This article reflects on the qualitative methodology of a recently completed UK project which used a combination of diary and multiple interviews/ focus groups to track over a fieldwork period of up to a year citizens’ reflections on their relationship to a public world and the contribution to this of their media consumption. In particular, the article considers how the project’s multiple methods enabled multiple angles on the inevitable artificiality and performative dimension of the diary process, resulting in rich data on people’s complex reflections on the uncertain position of the contemporary citizen

Comparison of governance approaches for the control of antimicrobial resistance: Analysis of three European countries

Policy makers and governments are calling for coordination to address the crisis emerging from the ineffectiveness of current antibiotics and stagnated pipe-line of new ones – antimicrobial resistance (AMR). Wider contextual drivers and mechanisms are contributing to shifts in governance strategies in health care, but are national health system approaches aligned with strategies required to tackle antimicrobial resistance? This article provides an analysis of governance approaches within healthcare systems including: priority setting, performance monitoring and accountability for AMR prevention in three European countries: England, France and Germany. Advantages and unresolved issues from these different experiences are reported, concluding that mechanisms are needed to support partnerships between healthcare professionals and patients with democratized decision-making and accountability via collaboration. But along with this multi-stakeholder approach to governance, a balance between regulation and persuasion is needed

Variability of the Aging Process in Dementia-Free Adults With Down Syndrome

The aim of this cross-sectional study was to analyze the typical aging process in adults with Down syndrome, focusing on its variability. The sample comprised 120 adults with Down syndrome who were free of dementia. Ages ranged from 20 to 69 years. Each participant was assessed on cognitive functioning and social adaptation, and was checked for the presence of psychopathological disorders. Results revealed an age-related deterioration in both cognitive and social adaptation skills, the extent of this decline depending on the dimension under scrutiny, and interindividual variability in aging profiles

Pelizaeus-Merzbacher-Like disease presentation of MCT8 mutated male subjects.

Pelizaeus-Merzbacher Disease is an X-linked hypomyelinatiing leukodystrophy. We report mutations in the thyroid hormone transporter gene MCT8 in 11% of 53 families affected by hypomyelinating leukodystrophies of unknown aetiology. The 12 MCT8 mutated patients express initially a Pelizaeus-Merzbacher-Like disease phenotype with a latter unusual improvement of magnetic resonance imaging white matter signal despite absence of clinical progression. This observation underlines the interest of determining both free T3 and free T4 serum concentrations to screen for MCT8 mutations in young patients (<3 y) with a severe Pelizaeus-Merzbacher-Like disease presentation or older severe mentally retarded male patients with "hypomyelinated" regions

The TOSCA Registry for Tuberous Sclerosis-Lessons Learnt for Future Registry Development in Rare and Complex Diseases.

Introduction: The TuberOus SClerosis registry to increase disease Awareness (TOSCA) is an international disease registry designed to provide insights into the clinical characteristics of patients with Tuberous Sclerosis Complex (TSC). The aims of this study were to identify issues that arose during the design, execution, and publication phases of TOSCA, and to reflect on lessons learnt that may guide future registries in rare and complex diseases. Methods: A questionnaire was designed to identify the strengths, weaknesses, and issues that arose at any stage of development and implementation of the TOSCA registry. The questionnaire contained 225 questions distributed in 7 sections (identification of issues during registry planning, during the operation of the registry, during data analysis, during the publication of the results, other issues, assessment of lessons learnt, and additional comments), and was sent by e-mail to 511 people involved in the registry, including 28 members of the Scientific Advisory Board (SAB), 162 principal investigators (PIs), and 321 employees of the sponsor belonging to the medical department or that were clinical research associate (CRA). Questionnaires received within the 2 months from the initial mailing were included in the analysis. Results: A total of 53 (10.4%) questionnaires were received (64.3% for SAB members, 12.3% for PIs and 4.7% for employees of the sponsor), and the overall completeness rate for closed questions was 87.6%. The most common issues identified were the limited duration of the registry (38%) and issues related to handling of missing data (32%). In addition, 25% of the respondents commented that biases might have compromised the validity of the results. More than 80% of the respondents reported that the registry improved the knowledge on the natural history and manifestations of TSC, increased disease awareness and helped to identify relevant information for clinical research in TSC. Conclusions: This analysis shows the importance of registries as a powerful tool to increase disease awareness, to produce real-world evidence, and to generate questions for future research. However, there is a need to implement strategies to ensure patient retention and long-term sustainability of patient registries, to improve data quality, and to reduce biases

An anarchy of cultures: aesthetics and the changing school

It is the contention of this paper that schools are currently sandwiched between demands of the economy on one side and increasingly fundamentalist communities on the other; that schools need some degree of autonomy from each; that the greatest challenge of the century is how we can live together despite our differences; and that the only way of successfully meeting this challenge is for schools to put social justice at the heart of their activities, activities that are best informed by the cultivation of reasoned imagination &ndash; that is, by an aesthetic approach to the development of intellectual, social, cultural, economic and personal identities

Educação, conflito e convivência democrática

Após uma caracterização sucinta da actual condição pós-moderna, serão desenvolvidas algumas questões que, pela sua relevância actual no campo da educação, merecem ser revisitadas de modo crítico, nomeadamente, e num primeiro momento, a escola, o conflito e a convivência. Num segundo momento, apontar-se-ão algumas características da escola que fazem dela uma organização com alguma perversidade, hipocrisia e irracionalidade. O último aspecto a ser tratado irá compreender a escola como organização comunicacional ou organização convivencial, onde os conceitos de disciplina, violência, conflito e convivência assumem um sentido mais profundamente democrático.After a succinct characterization of the current postmodern condition, some questions might be developed, because of its current relevance in the education field, they must to be reviewed in a critical way, namely, and firstly, the school, the conflict and the conviviality. Secondly, this article underlines some school’s characteristics that turns it into an organization with a little perversity, hypocrisy and irrationality. The last aspect to be treated is the understanding of the school as a communicative or convivial organization, in which the concepts of discipline, violence, conflict and conviviality assume a more democratic orientation.Enseguida a una caracterización sucinta de la actual condición pos-moderna, serán desarrolladas algunas cuestiones que, por su relevancia actual en el campo de la educación, merecen ser visitadas de modo crítico, nombradamente, y en primero momento, la escuela, el conflicto y la convivencia. En segundo momento, se apuntarán algunas características de la escuela que la hacen una organización con alguna perversidad, hipocresía e irracionalidad. El último aspecto a ser tratado irá comprender la escuela como organización de comunicación u organización de convivencia, donde los conceptos de disciplina, violencia, conflicto e convivencia asumen un sentido más profundamente democrático.(undefined

The ethical challenge of Touraine's 'living together'

In Can We Live Together? Alain Touraine combines a consummate analysis of crucial social tensions in contemporary societies with a strong normative appeal for a new emancipatory 'Subject' capable of overcoming the twin threats of atomisation or authoritarianism. He calls for a move from 'politics to ethics' and then from ethics back to politics to enable the new Subject to make a reality out of the goals of democracy and solidarity. However, he has little to say about the nature of such an ethics. This article argues that this lacuna could usefully be filled by adopting a form of radical humanism found in the work of Erich Fromm. It defies convention in the social sciences by operating from an explicit view of the 'is' and the 'ought' of common human nature, specifying reason, love and productive work as the qualities to be realised if we are to move closer to human solidarity. Although there remain significant philosophical and political differences between the two positions, particularly on the role to be played by 'the nation', their juxtaposition opens new lines of inquiry in the field of cosmopolitan ethics

From Indymedia to Anonymous: rethinking action and identity in digital cultures

The period following the social mobilizations of 2011 has seen a renewed focus on the place of communication in collective action, linked to the increasing importance of digital communications. Framed in terms of personalized ‘connective action’ or the social morphology of networks, these analyses have criticized previously dominant models of ‘collective identity’, arguing that collective action needs to be understood as ‘digital networking’. These influential approaches have been significantly constructed as a response to models of communication and action evident in the rise of Independent Media Centres in the period following 1999. After considering the rise of the ‘digital networking’ paradigm linked to analyses of Indymedia, this article considers the emergence of the internet-based collaboration known as Anonymous, focusing on its origins on the 4chan manga site and its 2008 campaign against Scientology, and also considers the ‘I am the 99%’ microblog that emerged as part of the Occupy movement. The emergence of Anonymous highlights dimensions of digital culture such as the ephemeral, the importance of memes, an ethic of lulz, the mask and the grotesque. These forms of communication are discussed in the light of dominant attempts to shape digital space in terms of radical transparency, the knowable and the calculable. It is argued that these contrasting approaches may amount to opposing social models of an emerging information society, and that the analysis of contemporary conflicts and mobilizations needs to be alert to novel forms of communicative practice at work in digital cultures today