The evidence-based development of an intervention to address the information needs of adults newly diagnosed with primary brain tumours and their carers

Adults diagnosed with primary brain tumours often experience physical, cognitive and neuropsychiatric impairments and decline in quality of life. Although disease and treatment-related information is commonly provided to cancer patients and carers, newly diagnosed brain tumour patients and their carers report unmet information needs. Few interventions have been designed or proven to address these information needs. Accordingly, a three-study research program, that incorporated both qualitative and quantitative research methods, was designed to: 1) identify and select an intervention to improve the provision of information, and meet the needs of patients with a brain tumour; 2) use an evidence-based approach to establish the content, language and format for the intervention; and 3) assess the acceptability of the intervention, and the feasibility of evaluation, with newly diagnosed brain tumour patients. Study 1: Structured concept mapping techniques were undertaken with 30 health professionals, who identified strategies or items for improving care, and rated each of 42 items for importance, feasibility, and the extent to which such care was provided. Participants also provided data to interpret the relationship between items, which were translated into ‘maps’ of relationships between information and other aspects of health care using multidimensional scaling and hierarchical cluster analysis. Results were discussed by participants in small groups and individual interviews to understand the ratings, and facilitators and barriers to implementation. A care coordinator was rated as the most important strategy by health professionals. Two items directly related to information provision were also seen as highly important: "information to enable the patient or carer to ask questions" and "for doctors to encourage patients to ask questions". Qualitative analyses revealed that information provision was individualised, depending on patients’ information needs and preferences, demographic variables and distress, the characteristics of health professionals who provide information, the relationship between the individual patient and health professional, and influenced by the fragmented nature of the health care system. Based on quantitative and qualitative findings, a brain tumour specific question prompt list (QPL) was chosen for development and feasibility testing. A QPL consists of a list of questions that patients and carers may want to ask their doctors. It is designed to encourage the asking of questions in the medical consultation, allowing patients to control the content, and amount of information provided by health professionals. Study 2: The initial structure and content of the brain tumour specific QPL developed was based upon thematic analyses of 1) patient materials for brain tumour patients, 2) QPLs designed for other patient populations, and 3) clinical practice guidelines for the psychosocial care of glioma patients. An iterative process of review and refinement of content was undertaken via telephone interviews with a convenience sample of 18 patients and/or carers. Successive drafts of QPLs were sent to patients and carers and changes made until no new topics or suggestions arose in four successive interviews (saturation). Once QPL content was established, readability analyses and redrafting were conducted to achieve a sixth-grade reading level. The draft QPL was also reviewed by eight health professionals, and shortened and modified based on their feedback. Professional design of the QPL was conducted and sent to patients and carers for further review. The final QPL contained questions in seven colour-coded sections: 1) diagnosis; 2) prognosis; 3) symptoms and problems; 4) treatment; 5) support; 6) after treatment finishes; and 7) the health professional team. Study 3: A feasibility study was conducted to determine the acceptability of the QPL and the appropriateness of methods, to inform a potential future randomised trial to evaluate its effectiveness. A pre-test post-test design was used with a nonrandomised control group. The control group was provided with ‘standard information’, the intervention group with ‘standard information’ plus the QPL. The primary outcome measure was acceptability of the QPL to participants. Twenty patients from four hospitals were recruited a median of 1 month (range 0-46 months) after diagnosis, and 17 completed baseline and follow-up interviews. Six participants would have preferred to receive the information booklet (standard information or QPL) at a different time, most commonly at diagnosis. Seven participants reported on the acceptability of the QPL: all said that the QPL was helpful, and that it contained questions that were useful to them; six said it made it easier to ask questions. Compared with control group participants’ ratings of ‘standard information’, QPL group participants’ views of the QPL were more positive; the QPL had been read more times, was less likely to be reported as ‘overwhelming’ to read, and was more likely to prompt participants to ask questions of their health professionals. The results from the three studies of this research program add to the body of literature on information provision for brain tumour patients. Together, these studies suggest that a QPL may be appropriate for the neuro-oncology setting and acceptable to patients. The QPL aims to assist patients to express their information needs, enabling health professionals to better provide the type and amount of information that patients need to prepare for treatment and the future. This may help health professionals meet the challenge of giving patients sufficient information, without providing ‘too much’ or ‘unnecessary’ information, or taking away hope. Future studies with rigorous designs are now needed to determine the effectiveness of the QPL.

Ethical review in creative industries and other practice-based research

The processes used in Australian universities for reviewing the ethics of research projects are based on the traditions of research and practice from the medical and health sciences. The national guidelines for ethical conduct in research are heavily based on presumptions that the researcher–participant relationship is similar to a doctor–patient relationship. The National Health and Medical Research Council, Australian Research Council and Australian Vice-Chancellors’ Committee have made a laudable effort to fix this problem by releasing the National Statement on Ethical Conduct in Human Research in 2007, to replace the 1999 National Statement on Ethical Conduct in Research Involving Humans. The new statement better encompasses the needs of the humanities, social sciences and creative industries. However, this paper argues that the revised National Statement and ethical review processes within universities still do not fully encompass the definitions of ‘research’ and the requirements, traditions, codes of practice and standards of the humanities, social sciences and creative industries. The paper argues that scholars within these disciplines often lack the language to articulate their modes of practice and risk management strategies to university-level ethics committees. As a consequence, scholars from these disciplines may find their research is delayed or stymied. The paper focuses on creative industries researchers, and explores the issues that they face in managing the ethical review process, particularly when engaging in practice-based research. Although the focus is on the creative industries, the issues are relevant to most fields in the humanities and social sciences.

Cultural studies and the urgency of interdisciplinarity : sooner, not later, we're going to need a cultural science (Os Estudos Culturais e a urgência por interdisciplinaridade: cedo, e não tarde, vamos precisar de uma Ciência da Cultura)

Most of creativity in the digital world passes unnoticed by the industry practices and policies, and it isn't taken into account in the cultural and economic strategies of the creative industries. We should find ways to catalyze this creative production, showing how the user's contribution may contribute to social learning, cultural and economic advancement. To that effect, we must know what is an open creative system and how it works. Based on this diagnosis, the author that interdisciplinarity is urgent and there is also a need for a science of culture. What is at stake is a strategy of integrated development, as regards the upcoming innovation in its complex, productive and learning aspects.

VET and VET educators : understanding teacher dilemmas in providing quality educational experience to international students in Brisbane

In the past fifteen years, increasing attention has been given to the role of Vocational Education and Training (VET) in attracting large numbers of international students and its contribution to the economic development of Australia. This trend has given rise to many challenges in vocational education, especially with regard to providing quality education that ensures international students’ stay in Australia is a satisfactory experience. Teachers are key stakeholders in international education and share responsibility for ensuring international students gain quality learning experiences and positive outcomes. However, the challenges and needs of these teachers are generally not well understood. Therefore, this paper draws on the dilemmas faced by teachers of international students associated with professional, personal, ethical and educational aspects. This paper reports on a Masters Research project that is designed to investigate the dilemmas that teachers of international students face in VET in Australia, particularly in Brisbane. This study uses a qualitative approach within the interpretive constructivist paradigm to gain real-life insights through responsive interviewing and inductive data analysis. While the data collection has been done, the analysis of data is in progress. Responsive interviews with teachers of VET with different academic and national backgrounds, ages, industry experience have identified particular understandings, ideologies and representations of what it means to be a teacher in today's multicultural VET environment; provoking both resistances and new pedagogical understanding of teacher dilemmas and their work environment through the eyes of teachers of international students. The paper considers the challenges for the VET practitioners within the VET system while reflecting on the theme for the 2011 AVETRA conference, “Research in VET: Janus- Reflecting Back, Projecting Forward” by focusing particularly on “Rethinking pedagogies and pathways in VET work through the voice of VET workers”.

They Say You are a Danger But You Are Not: Representations and Construction of the Moral Self in Narratives of 'Dangerous Individuals'

This article is based on an analysis of narratives of 26 offenders with mental health problems living in the United Kingdom. It explores the impact of an ascribed dangerous status and the construction of the self as moral and responsible in response to this label with reference to the literature on denial, deviance disavowal and other “techniques of neutralization” and Goffman's presentation of self. Two dominant strands are identified in relation to the construction of moral self-hood: “Not my fault” and “Good at heart” narratives. “Techniques of neutralization” are widely drawn on, particularly denial of responsibility in the “Not my fault” narratives that seek to explain anti-social behavior with reference to external forces such as a hostile environment inhibiting their ability to control their lives. In contrast, “Good at heart” narratives draw on the essentially good and moral nature of the inner-self. Both are used as evidence of sharing and adhering to moral norms in order to present an acceptable and credible self.

The effect of injury diagnosis on expected Postconcussion Syndrome (PCS) symptom reporting and illness perception

Objective: To determine if systematic variation of diagnostic terminology (i.e. concussion, minor head injury [MHI], mild traumatic brain injury [mTBI]) following a standardized injury description produced different expected symptoms and illness perceptions. We hypothesized that worse outcomes would be expected of mTBI, compared to other diagnoses, and that MHI would be perceived as worse than concussion. Method:108 volunteers were randomly allocated to conditions in which they read a vignette describing a motor vehicle accident-related mTBI followed by: a diagnosis of mTBI (n=27), MHI (n=24), concussion (n=31); or, no diagnosis (n=26). All groups rated: a) event ‘undesirability’; b) illness perception, and; c) expected Postconcussion Syndrome (PCS) and Posttraumatic Stress Disorder (PTSD) symptoms six months post injury. Results: On average, more PCS symptomatology was expected following mTBI compared to other diagnoses, but this difference was not statistically significant. There was a statistically significant group effect on undesirability (mTBI>concussion & MHI), PTSD symptomatology (mTBI & no diagnosis>concussion), and negative illness perception (mTBI & no diagnosis>concussion). Conclusion: In general, diagnostic terminology did not affect anticipated PCS symptoms six months post injury, but other outcomes were affected. Given that these diagnostic terms are used interchangeably, this study suggests that changing terminology can influence known contributors to poor mTBI outcome.

Ethics and social networking sites : a disclosive analysis of Facebook

Purpose – This paper aims to provide insights into the moral values embodied by a popular social networking site (SNS), Facebook. Design/methodology/approach – This study is based upon qualitative fieldwork, involving participant observation, conducted over a two-year period. The authors adopt the position that technology as well as humans has a moral character in order to disclose ethical concerns that are not transparent to users of the site. Findings – Much research on the ethics of information systems has focused on the way that people deploy particular technologies, and the consequences arising, with a view to making policy recommendations and ethical interventions. By focusing on technology as a moral actor with reach across and beyond the internet, the authors reveal the complex and diffuse nature of ethical responsibility and the consequent implications for governance of SNS. Research limitations/implications – The authors situate their research in a body of work known as disclosive ethics, and argue for an ongoing process of evaluating SNS to reveal their moral importance. Along with that of other authors in the genre, this work is largely descriptive, but the paper engages with prior research by Brey and Introna to highlight the scope for theory development. Practical implications – Governance measures that require the developers of social networking sites to revise their designs fail to address the diffuse nature of ethical responsibility in this case. Such technologies need to be opened up to scrutiny on a regular basis to increase public awareness of the issues and thereby disclose concerns to a wider audience. The authors suggest that there is value in studying the development and use of these technologies in their infancy, or if established, in the experiences of novice users. Furthermore, flash points in technological trajectories can prove useful sites of investigation. Originality/value – Existing research on social networking sites either fails to address ethical concerns head on or adopts a tool view of the technologies so that the focus is on the ethical behaviour of users. The authors focus upon the agency, and hence the moral character, of technology to show both the possibilities for, and limitations of, ethical interventions in such cases.

Molecular approaches to diagnosis and management of ovarian cancer

The recent advances in the understanding of the pathogenesis of ovarian cancer have been helpful in addressing issues in diagnosis, prognosis and management. The study of ovarian tumours by novel techniques such as immunohistochemistry, fluorescent in situ hybridisation, comparative genomic hybridisation, polymerase chain reaction and new tumour markers have aided the evaluation and application of new concepts into clinical practice. The correlation of novel surrogate tumour specific features with response to treatment and outcome in patients has defined prognostic factors which may allow the future design of tailored therapy based on a molecular profile of the tumour. These have also been used to design new approaches to therapy such as antibody targeting and gene therapy. The delineation of roles of c-erbB2, c-fms and other novel receptor kinases in the pathogenesis of ovarian cancer has led initially to the development of anti-c-erbB2 monoclonal antibody therapy. The discovery of BRCA1 and BRCA2 genes will have an impact in the diagnosis and the prevention of familial ovarian cancer. The important role played by recessive genes such as p53 in cancer has raised the possibility of restoration of gene function by gene therapy. Although the pathological diagnosis of ovarian cancer is still confirmed principally on morphological features, addition of newer investigations will increasingly be useful in addressing difficult diagnostic problems. The increasingly rapid pace of discovery of genes important in disease, makes it imperative that the evaluation of their contribution in the pathogenesis of ovarian cancer is undertaken swiftly, thus improving the overall management of patients and their outcome.

Nicklinson v Ministry of Justice [2012] 304 (QB) : further UK developments regarding a person's right to choose when and how to die : assisted termination of life

UK High Court decision - application for declarations legitimising third party assistance in voluntary termination of life - facts - moral, social and ethical issues - analysis.

A common ‘outlawness’ : criminalisation of Muslim minorities in the UK and Australia

Since mass immigration recruitments of the post-war period, ‘othered’ immigrants to both the UK and Australia have faced ‘mainstream’ cultural expectations to assimilate, and various forms of state management of their integration. Perceived failure or refusal to integrate has historically been constructed as deviant, though in certain policy phases this tendency has been mitigated by cultural pluralism and official multiculturalism. At critical times, hegemonic racialisation of immigrant minorities has entailed their criminalisation, especially that of their young men. In the UK following the ‘Rushdie Affair’ of 1989, and in both Britain and Australia following these states’ involvement in the 1990-91 Gulf War, the ‘Muslim Other’ was increasingly targeted in cycles of racialised moral panic. This has intensified dramatically since the 9/11 terrorist attacks and the ensuing ‘War on Terror’. The young men of Muslim immigrant communities in both these nations have, over the subsequent period, been the subject of heightened popular and state Islamophobia in relation to: perceived ‘ethnic gangs’; alleged deviant, predatory masculinity including so-called ‘ethnic gang rape’; and paranoia about Islamist ‘radicalisation’ and its supposed bolstering of terrorism. In this context, the earlier, more genuinely social-democratic and egalitarian, aspects of state approaches to ‘integration’ have been supplanted, briefly glossed by a rhetoric of ‘social inclusion’, by reversion to increasingly oppressive assimilationist and socially controlling forms of integrationism. This article presents some preliminary findings from fieldwork in Greater Manchester over 2012, showing how mainly British-born Muslims of immigrant background have experienced these processes.

Symbiotic relationships : saviour siblings, family rights and biomedicine

It is now possible to combine the use of preimplantation genetic diagnosis (PGD) and tissue matching to select an IVF embryo that will, after birth, be a compatible tissue donor for an existing individual. This article analyses the ethical issues and the regulatory frameworks that intersect around the creation of tissue compatible children.

Reconnecting theory and practice in a pluralistic organizing context : issues and Aristotelian considerations

The overall purpose of this paper is to contribute to the theory - practice gap debate in organization studies, especially in pluralistic contexts such as project organizing. We briefly outline some of the current debates, i.e. modernist and postmodernist proposals, and the prevalent dichotomous thinking stance assumptions to better move beyond it, anchoring our contribution in the Aristotelian ethical and practical philosophy. We introduce the current state of the debate, part of the broad question of “science that matters”, and the various discourses between practice and academia within social sciences and more specifically organizational studies. We briefly critically summarize some main features of the two main philosophical stances (modernism, postmodernism), before presenting some key aspects, for the purpose of this paper, of the Aristotelian pre-modern practical and ethical philosophy. Then, we build on the foundations above established, discussing propositions to reconnect theory and practice according the Aristotelian ethical and practical philosophy, and some key implications for research notably in the following areas: roles played by practitioners and scholars, emancipatory praxeological style of reasoning, for closing the “phronetic gap” and reconnecting means and ends, facts and values, relation between collective praxis, development of “good practice” (standards), ethics and politics. We conclude highlighting the role of the suggested shift to an Aristotelian emancipatory style of reasoning for reconciling theory and practice.

Managing Ethical Dilemmas

This chapter reviews almost a decade of research and writing undertaken by the authors into ethical dilemmas faced by leaders in a number of different operational contexts, including schools, universities and the public sector. The importance of this body of work is emphasised by one of our research participants who argued that ethical dilemmas were the 'bread and butter' of what leaders do. The chapter comprises four main sections. The first section overviews key theoretical aspects as background to the chapter, including relevant discussions about ethics and ethical decision-making. The second section synthesises the research findings from our work in the three contexts noted above, drawing out a set of learnings that contribute to better understandings of the nature, complexities and challenges of ethical dilemmas. This section is followed by a discussion of an explanatory conceptual model of ethical dilemmas that was developed initially from the literature and confirmed by our research. The model reminds us of some of the critical issues at play in ethical dilemmas, and some of the consequences and implications for organisational culture building they can generate. By way of a short scenario, the final section provides a theory-to-practice illustration of an ethical dilemma in action. A set of recommendations, drawn from the ideas of school leaders who have worked with this and similar dilemmas, is offered as a way forward to better understanding and resolution of such dilemmas so prevalent in our schools today.

Ethical screening and financial performance : the case of Islamic equity funds

Whether ethical screening affects portfolio performance is an important question that is yet to be settled in the literature. This paper aims to shed further light on this question by examining the performance of a large global sample of Islamic equity funds (IEFs) from 1984 to 2010. We find that IEFs underperform conventional funds by an average of 40 basis points per month, consistent with the underperformance hypothesis. In line with popular media claims that Islamic funds are a safer investment, IEFs outperformed conventional funds during the recent banking crisis. However, we find no such outperformance for other crises or high volatility periods. Based on fund holdings-based data, we provide evidence of a negative curvilinear relation between fund performance and ethical screening intensity, consistent with a return trade-off to being more ethical.

Criminal Justice Ethics : Cultivating the Moral Imagination

It is essential for those employed within the justice system to be able to competently and confidently work at the borders between ethics and the law. Criminal Justice Ethics offers a fresh new approach to considering ethical issues in a criminal justice context. Rather than simply offering a range of ethical dilemmas specific to various justice professionals, it provides extensive discussion of how individuals develop their 'moral imaginations' using ethical perspectives and practices, both as citizens of the world and as practitioners of justice. Starting from a consideration of the major ethical theories, this book sets the framework for an expansive discussion of ethics by moving from theory to consider the just society and the role of the justice professional within it. Each chapter provides detailed analysis of relevant ethical issues, and activities to engage students with the content, as well as review questions, which can be used for revision or examination. This book will help students to: • understand the various theoretical approaches to ethics, • apply these understandings to issues in society and the justice process, • assist in developing the ability to investigate, discuss, and analyse current ethical issues in criminal justice, • appreciate the diverse nature of ethical systems across cultures, • outline strategies for detecting and resolving ethical dilemmas. Rich with examples and ethical dilemmas from a broad range of contexts, this book's multicultural approach will appeal not only to criminal justice educators, but also to academics, students and practitioners approaching criminal justice from sociological, psychological or philosophical perspectives.