Does research into sensitive areas do harm? Experiences of research participation after a child’s diagnosis with Ewing’s Sarcoma

Objective: To investigate family members’ experiences of involvement in a previous study (conducted August 1995 to June 1997) following their child’s diagnosis with Ewing’s sarcoma. Design: Retrospective survey, conducted between 1 November and 30 November 1997, using a postal questionnaire. Participants: Eighty-one of 97 families who had previously completed an in-depth interview as part of a national case–control study of Ewing’s sarcoma. Main outcome measures: Participants’ views on how participation in the previous study had affected them and what motivated them to participate. Results: Most study participants indicated that taking part in the previous study had been a positive experience. Most (n = 79 [97.5%]) believed their involvement would benefit others and were glad to have participated, despite expecting and finding some parts of the interview to be painful. Parents whose child was still alive at the time of the interview recalled participation as more painful than those whose child had died before the interview. Parents who had completed the interview less than a year before our study recalled it as being more painful than those who had completed it more than a year before. Conclusions: That people suffering bereavement are generally eager to participate in research and may indeed find it a positive experience is useful information for members of ethics review boards and other “gatekeepers”, who frequently need to determine whether studies into sensitive areas should be approved. Such information may also help members of the community to make an informed decision regarding participation in such research.

Towards beneficence for young children in research : challenges for bioethics committees

Bioethics committees are the focus of international scrutiny,particularly in relation to their application of the principle of beneficence,ensuring that risks incurred in research are outweighed by benefits to those involved directly and to the broader society. Beneficence, in turn, has become an international focus in research with young children, who hitherto had been rarely seen or heard in their own right in research.Twenty years ago, The United Nations Convention on the Rights of the Child 1989 raised global awareness of children’s human rights to both participation and protection, and articulation of children’s rights came to inform understandings of young children’s rights in research. In the intervening period, countries such as Australia came to favour child protection and risk minimisation in research over the notion of children’s bone fide participation in research. A key element of the protection regime was the theoretical understanding of young children as developmentally unable and, therefore, unfit to understand, consent to and fully participate as research participants. This understanding has been challenged in recent decades by new theoretical understandings of children’s competence, where children can be seen to demonstrate competence, even at an early age, in consenting to, participating in and withdrawing from research. The paper draws on these understandings to provide insights for human research gatekeepers, such as bioethics committees, to deal with the challenges of research with young children and to realize the benefits that may accrue to children in research.

Getting lost in the field : the unpredictable nature of fieldwork with young people

This chapter focuses on the unpredictable nature of fieldwork with young offenders, specifically with those in a marginalised context. We begin by recounting our experiences working with young people who have had contact with criminal justice processes, particularly those who are the subject of extreme levels of official social control. We then turn to a discussion of the challenges associated with the unpredictable nature of fieldwork, specifically the difficulties associated with negotiating access with gatekeepers and negotiating with young people. We also discuss specific challenges with the research ethics governance of ethically sensitive research in this context (e.g. interviewing young people about offending behaviour). Finally, we recount our experiences in working these young people, with a focus on ‘the grunt’: that is, drawing out young peoples’ stories in interviews. We conclude with some reflections on the need to develop systematic instruction in qualitative work in this specific context.

A Multifaceted Strategy for Implementation of the Ottawa Ankle Rules in Two Emergency Departments

Problem Despite widespread acceptance of the Ottawa ankle rules for assessment of acute ankle injuries, their application varies considerably. Design Before and after study. Background and setting Emergency departments of a tertiary teaching hospital and a community hospital in Australia. Key measures for improvement Documentation of the Ottawa ankle rules, proportion of patients referred for radiography, proportion of radiographs showing a fracture. Strategies for change Education, a problem specific radiography request form, reminders, audit and feedback, and using radiographers as “gatekeepers.” Effects of change Documentation of the Ottawa ankle rules improved from 57.5% to 94.7% at the tertiary hospital, and 51.6% to 80.8% at the community hospital (P<0.001 for both). The proportion of patients undergoing radiography fell from 95.8% to 87.2% at the tertiary hospital, and from 91.4% to 78.9% at the community hospital (P<0.001 for both). The proportion of radiographs showing a fracture increased from 20.4% to 27.1% at the tertiary hospital (P=0.069), and 15.2% to 27.2% (P=0.002) at the community hospital. The missed fracture rate increased from 0% to 2.9% at the tertiary hospital and from 0% to 1.6% at the community hospital compared with baseline (P=0.783 and P=0.747). Lessons learnt Assessment of case note documentation has limitations. Clinician groups seem to differ in their capacity and willingness to change their practice. A multifaceted change strategy including a problem specific radiography request form can improve the selection of patients for radiography.

Fashion system Shanghai : the advent of a new gatekeeper

The term fashion system describes inter-relationships between production and consumption illustrating how the production of fashion is a collective activity. For instance, Yuniya Kawamura notes systems for the production of fashion differ around the globe and are subject to constant change, and Jennifer Craik draws attention to an ‘array of competing and intermeshing systems cutting across western and non-western cultures. In China, Shanghai’s nascent fashion system seeks to emulate the Eurocentric system of Fashion Weeks and industry support groups. It promises emergent designers a platform for global competition, yet there are tensions from within. Interaction with a fashion system inevitably means becoming validated or legitimised. Legitimisation in turn depends upon gatekeepers who make aesthetic judgments about the status, quality and cultural value of a designers work. Notwithstanding the proliferation of fashion media, in Shanghai a new gatekeeper has arrived, seeking to filter authenticity from artifice, offering truth in a fashion market saturated with fakery and the hollowness of foreign consumptive practice, and providing a place of sanctuary for Chinese fashion design. Thus this paper discusses how new agencies are allowing designers in Shanghai greater control over their brand image while creating novel opportunities for promotion and sales. It explores why designers choose this new model and provides new knowledge of the curation of fashion by these gatekeepers.

How do Chinese fashion designers become global fashion leaders? A new perspective on legitimisation in China’s fashion system

The term fashion system describes inter-relationships between production and consumption, illustrating how the production of fashion is a collective activity. For instance, Yuniya Kawamura (2011) notes systems for the production of fashion differ around the globe and are subject to constant change, and Jennifer Craik (1994, 6) draws attention to an ‘array of competing and intermeshing systems cutting across western and non-western cultures. In China, Shanghai’s nascent fashion system seeks to emulate the Eurocentric system of Fashion Weeks and industry support groups. It promises designers a platform for global competition, yet there are tensions from within. Interaction with a fashion system inevitably means becoming validated or legitimised. Legitimisation in turn depends upon gatekeepers who make aesthetic judgments about the status, quality, and cultural value of a designers work (Becker 2008). My paper offers a new perspective on legitimisation that is drawn mainly from my PhD research. I argue that some Chinese fashion designers are on the path to becoming global fashion designers because they have embraced a global aesthetic that resonates with the human condition, rather than the manufactured authenticity of a Eurocentric fashion system that perpetuates endless consumption. In this way, they are able to ‘self-legitimise’. I contend these designers are ‘designers for humans’, because they are able to look beyond the mythology of fashion brands, and the Eurocentric fashion system, where they explore the tensions of man and culture in their practice. Furthermore, their design ethos pursues beauty, truth and harmony in the Chinese philosophical sense, as well as incorporating financial return in a process that is still enacted through a fashion system. Accordingly, cultural tradition, heritage and modernity, while still valuable, have less impact on their practice.

Online Copyright Infringement Discussion Paper July 2014

The Paper, by consideration of the issue of authorisation, addresses a very practical development in commerce. Online copyright infringement is now not only about unauthorised uses of cinematograph films but has filtered down to become more prevalent amongst small to medium enterprises (SME), as some competitors embrace online trading by aggressively and often unlawfully, seeking market share. It is understandable that internet service providers (ISPs), as gatekeepers of internet traffic, may be considered as being more than a conduit of contravening conduct but not a joint tortfeasor involved in a common design. In between those extremes lies the concept of authorisation in copyright which has a long history in Australia since the Copyright Act 1905 (Cth). The text of s 101(1A) of the Copyright Act, in particular s 101(1A)(a) and (c), derived from statements of Gibbs J in Moorhouse.

Pharmaceutical company influences on medication prescribing and their potential impact on quality use of medicines

Background Pharmaceuticals are big business, reporting strong market growth year after year. The ‘gatekeepers’ of this market are prescribers of medicines, who are the major target of pharmaceutical companies, utilizing direct and indirect influences. Methods This paper draws on previous research investigating pharmaceutical company prescribing influences to develop a qualitative model demonstrating the synergism between commercial influences on prescribing. The generic model was used to explore a realistic but hypothetical scenario to ascertain the applicability of the model. Results and Discussion A generic influence model was developed. The model was readily able to be adapted to reflect a realistic practice scenario. Conclusion Prescriber awareness of the linkages between various seemingly separate marketing techniques could potentially improve medicines usage in an evidence-based practice paradigm.

A manager-centred perspective on work-life integration

Decades of research has shown that the uptake of workplace ‘flexibility’ provisions set out in organizational/HR policies rests heavily on the support of line managers. However, the majority of scholarship addressing the intersection of managers’ roles and work-life integration has been employee-centred. That is, the literature primarily situates managers as gatekeepers to the effective implementation of work and family policies as they affect employees or workers, examining their role in, for example, approving requests to adjust or personalise employees’ work schedules; influencing whether employees are cross-trained to undertake the work of others during absences; publicising available policies; and creating norms supporting the use of formal provisions (Ryan & Ernst Kossek, 2008). Managers’ actions are primarily seen as key, contingent phenomena affecting the adoption and diffusion of work-life initiatives in an organization; consequently impacting on the work-life outcomes of subordinate employees (Bardoel, 2003; Gregory & Milner, 2012).

Voice, deliberation, resistance and persuasion through networked journalism

The pervasive use of the World Wide Web by the general population has created a cultural shift in “our living world”. It has enabled more people to share more information about more events and issues in the world than was possible before its general use. As a consequence, it has transformed traditional news media’s approach to almost every aspect of journalism, with many organisations restructuring their philosophy and practice to include a variety of participatory spaces/forums where people are free to engage in deliberative dialogue about matters of public importance. Moreover, while news media were the traditional gatekeepers of information, today many organisations allow, to different degrees, the general public and other independent journalism entities to participate in the news production process, which may include agenda setting and content production. This paper draws from an international collective case study that showcases various approaches to networked online news journalism. It examines the ways in which different traditional news media models use digital tools and technologies for participatory communication of information about matters of public interest. The research finds differences between the ways in which public service, commercial and independent news media give voice to the public and ultimately their approach to journalism’s role as the Fourth Estate––one of the key institutions of democracy. The work is framed by the notion that journalism in democratic societies has a key role in ensuring citizens are informed and engaged with public affairs. An examination of four media models, the British Broadcasting Corporation (BBC), the Guardian, News Limited and OhmyNews, showcases the various approaches to networked online news journalism and how each provides different avenues for citizen empowerment. The cases are described and analysed in the context of their own social, political and economic setting. Semi-structured in-depth interviews with key senior journalists and editors provide specific information on comparisons between the distinctive practices of their own organisation. In particular these show how the ideal of democracy can be used as a tool of persuasion as much as a method of deliberation.

Makt, konst, elit - konstfältets positioner, relationer och resurser i 1940- och 1950-talens Helsingfors

The dissertation examines the power mechanisms and institutional power hierarchies of the 1940s-1950s era arts elite in Helsinki and their influence on issues of taste in the visual arts. For the purposes of this study, the elite is understood to consist mainly of the board members of the principal elected bodies in the field of the arts. The theoretical framework employed is based on Pierre Bourdieu s field theory and the network perspective. The author has examined what the key, pervasive valuations were that governed the exercising of power by the arts elite in issues of taste, involving determination of who was an acknowledged artist and what was good art. The dissertation demonstrates that this exercising of power was governed by certain collective practices which maintained the illusion that the exercising of power was democratic and based on artistic quality. These practices were the corporate system, using artistic arguments in issues of taste, and using networks in the exercising of power. The struggle in the field of the arts was about who ultimately was entitled to define the value of contemporary art; the issue did not arise regarding historical art. Artists managed to gain a leading position as gatekeepers in issues regarding contemporary art. The author discusses a number of conflicts in the field of the arts that highlight the institutional hierarchies and the capital held by the various players. The structural changes that occurred in administration in the field of cultural production in the 1950s led to the separation of bureaucratic competence on the one hand and aesthetic competence on the other. There was a hierarchy in the field of the arts between institutions, between instruments of legitimisation, and between the symbolic and social capital of players in the field. The hierarchy in the arts ultimately depended on how well the elite could influence tastes through the instruments at their disposal. The various instruments of legitimisation grants, purchases, etc. were ranked differently in the evaluation of acknowledged artists and good art. The dissertation discusses what values, in the form of types of symbolic capital, the arts elite embraced and what role these played in the elite s exercising of power, with particular focus on gender, language, region and economic capital. The aesthetic capital of an artist was of only minor importance in the exercising of power by the arts elite. The dissertation further discusses the points of contact between the arts elite and players in other fields, such as the economic, media and consumer fields. When the arts elite, through the Academy of Fine Arts, became an active player in the art market, this led to a hierarchy where the division between acknowledged and not-acknowledged galleries became sharper.

REHTORIT PORTINVARTIJOINA : sekä miten rehtoreiden kertomuksista muodostuu pääkaupunkiseudun Tehostetun ja erityisen tuen kehittämisverkoston tarina

Research objectives. The Special Education Strategy, the legislative change based on it, and the change in the Finnish National Core Curriculum for Pre-primary and Basic Education build the background for this study. An improvement initiative called KELPO was founded in 2008 to implement a new three-level support system in municipalities. To support this initiative, the Network of Intensified and Special Support in the Metropolitan Area was founded in 2010. The Network consists of 22 pilot schools from four metropolitan municipalities and the Centre for Educational Assessment at the University of Helsinki that carries out the developmental assessment of the initiative. The objective of my study was to form an overall view of the functioning of the Network. The data included interviews of 20 principals of the schools belonging to the Network. The interviews were conducted by the Centre for Educational Assessment in the autumn of 2010. The research question is: What do principals speak about the networking done inside and between the municipalities? Methods. I received the data as already transcribed for my use. I researched it using a narrative research approach. As a method I used both thematic reading and classifying narratives by the holistic-content. These methods belong under the analyze of narratives. I collected the narratives from the principals under themes that arose from the data delimited by my research question. The narrative analysis materialized by writing the research story, as a new story was built by the principals stories theme by theme. The classification of the narratives by the holistic-content method was realized according to what kind of a gatekeeper s role each principal had. With a gatekeeper I here mean the intermediary role of a principal between the school and outside world. In addition, I used the analysis of interactive production of the narrative when applicable. Results and conclusions. Explicit features in the story of the Network were the principals at least partial uncertainty of the purpose of the networking, lack of time and resources, changing of initiatives, and lack of continuity. Positive narratives about ownership and empowerment could also be found. Nonetheless, many of the preconditions for success described by the school reform and school networking theories were not fulfilled. According to the collective story, there was no shared goal or purpose, and nor were the needs of autonomy, competence, and relatedness fulfilled. Three different kinds of gatekeepers were found in the data: The Exemplary ones, The Survivors and The Losers. The distinguishing factor turned out to be sharing of information at school. Based on the narratives, the schools with principals taking care of sharing information were the most active in partaking in networking.