Guest editorial: End of life law, ethics, policy and practice

The International Conference on End of Life: Law, Ethics, Policy and Practice was held at Queensland University of Technology, Brisbane, Australia in August 2014. It was co-hosted by the Australian Centre for Health Law Research, the Dalhousie Health Law Institute (Canada) and the Tsinghua Health Law Research Center (China). The conference attracted almost 350 delegates from 26 countries and included representation from over a dozen different disciplines with an interest in end of life care.

Imagination for inclusion: Shared understandings across diverse contexts of educational practice

This chapter explores inclusive education as a social imaginary; that is, a common understanding that has become a global perspective. We trace the roots of inclusive education in early movements for social justice and the development of special education and note that these two domains continue to be seen in the ongoing tensions within the practice of inclusive education. We conclude that although much has been achieved in opening up greater opportunities for all children and young people to participate in and engage with education, there is still much work to be done. Creative imagining, discursive dialogue, and courageous actions in breaking down barriers in schools and communities will strengthen the local and global social imaginary of inclusive education, thus affording even greater opportunities for all children and young people regardless of any categorisation that may have been applied to their differences.

On hashtaggery and portmanteaugraphy: Memetic wordplay as social media practice

I wouldn’t necessarily consider myself a meme scholar outright; rather, the memes within my research have emerged from studying everyday practices and cultures of social media, within political and topical discussions, as well as popular culture and fandom contexts. This piece is an extension of ideas that have come out of my recent work around the “irreverent internet” (in the first and last of the blatant plugs, see this [sorry, paywall] and this). I’ve used this term as a descriptor for how play and silliness are popular strategies for the coverage and presentation of the topical and the mundane online. Here, I am especially focusing on playful and irreverent engagement with issues, events, and breaking news, where irony, sarcasm, parody, satire, snark, and more, are important framing devices on social media. While my work (and this post) generally falls on the side of “nice” irreverence, these approaches are also applicable for meaner, vindictive, hateful, offensive, and vitriolic comments. These include meme communities dealing in racist attitudes and content or various hashtags and related comments which promote racist, far-right views and/or denote contexts rife with abuse and harassment — and not just the Gamergate example. This is not positioning trolling as a single practice or intent, either— see Whitney Phillips’ work...

Dance teacher education in the 21st century : Linking cultural and aesthetic practice

This paper describes the implementation of the recommendations of a series of research projects, within an undergraduate dance teacher-training course, into the training of collaborative, empathetic, ethical and creative dance teachers. Banks’s Dimensions for Multicultural Education (Banks, 1993) was used as a lens to analyze the design and delivery of cultural dance activities within a university dance-teaching unit, implemented in Australia and Timor Leste, and to reflect on the adaptability of the Performance in Context Model (Stevens & Huddy, in press) across different cultural contexts. Content and contextual knowledge, transformational learning pedagogy, teaching for equity and empathy development were explored through a culturally responsive teaching and learning unit, supported by critical analysis and reflection. This analysis identified a number of key understandings in relation to the design and delivery of cultural dance activities.

Diffusing research into routine midwifery practice

This research applied Greenhalgh et al's (2005) organisational change theoretical framework and a case study method approach to explore the process of implementing a smoking cessation intervention for pregnant women. The study was carried out according to the principles laid down in the National statement on ethical conduct in human research, produced by the National Health and Medical Research Council, Australia. Ethical approval for the research was sought and received from Queensland University of Technology human research ethics committee, prior to the start of the study. The sample constituted four participants who had been involved in the process of disseminating a training programme for midwives to implement a smoking cessation intervention. Eight semi-structured interviews were undertaken with these participants and the interviews and background programme data were subjected to theoretical analysis. The data were analysed through the lens of the Greenhalgh et al (2005) framework. The result was a disaggregation and (re)aggregation of data in the formation of an analytical outcome (Charmaz, 2006).

Canadian Stroke Best Practice Recommendations: Mood, Cognition and Fatigue Following Stroke practice guidelines, update 2015

Every year, approximately 62 000 people with stroke and transient ischemic attack are treated in Canadian hospitals, and the evidence suggests one-third or more will experience vascular-cognitive impairment, and/or intractable fatigue, either alone or in combination. The 2015 update of the Canadian Stroke Best Practice Recommendations: Mood, Cognition and Fatigue Module guideline is a comprehensive summary of current evidence-based recommendations for clinicians in a range of settings, who provide care to patients following stroke. The three consequences of stroke that are the focus of the this guideline (poststroke depression, vascular cognitive impairment, and fatigue) have high incidence rates and significant impact on the lives of people who have had a stroke, impede recovery, and result in worse long-term outcomes. Significant practice variations and gaps in the research evidence have been reported for initial screening and in-depth assessment of stroke patients for these conditions. Also of concern, an increased number of family members and informal caregivers may also experience depressive symptoms in the poststroke recovery phase which further impact patient recovery. These factors emphasize the need for a system of care that ensures screening occurs as a standard and consistent component of clinical practice across settings as stroke patients transition from acute care to active rehabilitation and reintegration into their community. Additionally, building system capacity to ensure access to appropriate specialists for treatment and ongoing management of stroke survivors with these conditions is another great challenge.

Health-Related Quality of Life, Costs and Treatment of Inflammatory Rheumatic Diseases in Routine Practice : With special emphasis on biological drugs

Rheumatoid arthritis (RA) and other chronic inflammatory joint diseases already begin to affect patients health-related quality of life (HRQoL) in the earliest phases of these diseases. In treatment of inflammatory joint diseases, the last two decades have seen new strategies and treatment options introduced. Treatment is started at an earlier phase; combinations of disease-modifying anti-rheumatic drugs (DMARDs) and corticosteroids are used; and in refractory cases new drugs such as tumour necrosis factor (TNF) inhibitors or other biologicals can be started. In patients with new referrals to the Department of Rheumatology of the Helsinki University Central Hospital, we evaluated the 15D and the Stanford Health Assessment Questionnaire (HAQ) results at baseline and approximately 8 months after their first visit. Altogether the analysis included 295 patients with various rheumatic diseases. The mean baseline 15D score (0.822, SD 0.114) was significantly lower than for the age-matched general population (0.903, SD 0.098). Patients with osteoarthritis (OA) and spondyloarthropathies (SPA) reported the poorest HRQoL. In patients with RA and reactive arthritis (ReA) the HRQoL improved in a statistically significant manner during the 8-month follow-up. In addition, a clinically important change appeared in patients with systemic rheumatic diseases. HAQ score improved significantly in patients with RA, arthralgia and fibromyalgia, and ReA. In a study of 97 RA patients treated either with etanercept or adalimumab, we assessed their HRQoL with the RAND 36-Item Health Survey 1.0 (RAND-36) questionnaire. We also analysed changes in clinical parameters and the HAQ. With etanercept and adalimumab, the values of all domains in the RAND-36 questionnaire increased during the first 3 months. The efficacy of each in improving HRQoL was statistically significant, and the drug effects were comparable. Compared to Finnish age- and sex-matched general population values, the HRQoL of the RA patients was significantly lower at baseline and, despite the improvement, remained lower also at follow-up. Our RA patients had long-standing and severe disease that can explain the low HRQoL also at follow-up. In a pharmacoeconomic study of patients treated with infliximab we evaluated medical and work disability costs for patients with chronic inflammatory joint disease during one year before and one year after institution of infliximab treatment. Clinical and economic data for 96 patients with different arthritis diagnoses showed, in all patients, significantly improved clinical and laboratory variables. However, the medical costs increased significantly during the second period by 12 015 (95% confidence interval, 6 496 to 18 076). Only a minimal decrease in work disability costs occurred mean decrease 130 (-1 268 to 1 072). In a study involving a switch from infliximab to etanercept, we investigated the clinical outcome in 49 patients with RA. Reasons for switching were in 42% failure to respond by American College of Rheumatology (ACR) 50% criteria; in 12% adverse event; and in 46% non-medical reasons although the patients had responded to infliximab. The Disease Activity Score with 28 joints examined (DAS28) allowed us to measure patients disease activity and compare outcome between groups based on the reason for switching. In the patients in whom infliximab was switched to etanercept for nonmedical reasons, etanercept continued to suppress disease activity effectively, and 1-year drug survival for etanercept was 77% (95% CI, 62 to 97). In patients in the infliximab failure and adverse event groups, DAS28 values improved significantly during etanercept therapy. However, the 1-year drug survival of etanercept was only 43% (95% CI, 26 to 70) and 50% (95% CI, 33 to 100), respectively. Although the HRQoL of patients with inflammatory joint diseases is significantly lower than that of the general population, use of early and aggressive treatment strategies including TNF-inhibitors can improve patients HRQoL effectively. Further research is needed in finding new treatment strategies for those patients who fail to respond or lose their response to TNF-inhibitors.

Evidence-based practice

This chapter traces the history of evidence-based practice (EBP) from its roots in evidence-based medicine to contemporary thinking about its usefulness to public health practice. It defines EBP and differentiates it from ‘evidence-based medicine’, ‘evidence-based policy’ and ‘evidence-based healthcare’. As it is important to understand the subjective nature of knowledge and the research process, this chapter describes the nature and production of knowledge. This chapter considers the necessary skills for EBP, and the processes of attaining the necessary evidence. We examine the barriers and facilitators to identifying and implementing ‘best practice’, and when EBP is appropriate to use. There is a discussion about the limitations of EBP and the use of other information sources to guide practice, and concluding information about the application of evidence to guide policy and practice.

Paradigmatic considerations for creative practice in Creative Industries research: The case of Australia's Indie 100

This paper begins with the assertion that research grounded in creative practice constitutes a new paradigm. We argue both for and against the idea. We argue against the idea in terms of applying it to the idealised ‘lone artist’ engaged in the production of their art, whose focus of research is a self-reflection upon the art they produce, and whose art is also the findings of the research. Our position is that such an approach cannot be considered as anything other than a form of auto-phenomenography, that such efforts are part of qualitative research, and they are thus trivial in paradigmatic terms. However, we argue in the positive for understanding the artistic event – by which we mean any mass ecology of artistic practice – as being paradigmatically new in terms of research potentials and demands. Our exemplar for that argument is a practice-led, large-scale annual event called Indie 100 which has run for five years and has demonstrated a distinct paradigmatic ‘settling in’ over its duration while clearly pushing paradigmatic boundaries for research into creative practice.

How can evaluative thinking and practice inform performance models for organizations and personnel

In the world today there are many ways in which we measure, count and determine whether something is worth the effort or not. In Australia and many other countries, new government legislation is requiring government-funded entities to become more transparent in their practice and to develop a more cohesive narrative about the worth, or impact, for the betterment of society. This places the executives of such entities in a position of needing evaluative thinking and practice to guide how they may build the narrative that documents and demonstrates this type of impact. In thinking about where to start, executives, project and program managers may consider this workshop as a professional development opportunity to explore both the intended and unintended consequences of performance models as tools of evaluation. This workshop will offer participants an opportunity to unpack the place of performance models as an evaluative tool through the following: · What shape does an ethical, sound and valid performance measure for an organization or personnel take? · What role does cultural specificity play in the design and development of a performance model for an organization or for personnel? · How are stakeholders able to identify risk during the design and development of such models? · When and where will dissemination strategies be required? · And so what? How can you determine that your performance model implementation has made a difference now or in the future?

Finnish Dosimetric Practice for Epithermal Neutron Beam Dosimetry in Boron Neutron Capture Therapy

Boron neutron capture therapy (BNCT) is a form of chemically targeted radiotherapy that utilises the high neutron capture cross-section of boron-10 isotope to achieve a preferential dose increase in the tumour. The BNCT dosimetry poses a special challenge as the radiation dose absorbed by the irradiated tissues consists of several dose different components. Dosimetry is important as the effect of the radiation on the tissue is correlated with the radiation dose. Consistent and reliable radiation dose delivery and dosimetry are thus basic requirements for radiotherapy. The international recommendations for are not directly applicable to BNCT dosimetry. The existing dosimetry guidance for BNCT provides recommendations but also calls for investigating for complementary methods for comparison and improved accuracy. In this thesis the quality assurance and stability measurements of the neutron beam monitors used in dose delivery are presented. The beam monitors were found not to be affected by the presence of a phantom in the beam and that the effect of the reactor core power distribution was less than 1%. The weekly stability test with activation detectors has been generally reproducible within the recommended tolerance value of 2%. An established toolkit for epithermal neutron beams for determination of the dose components is presented and applied in an international dosimetric intercomparison. The measured quantities (neutron flux, fast neutron and photon dose) by the groups in the intercomparison were generally in agreement within the stated uncertainties. However, the uncertainties were large, ranging from 3-30% (1 standard deviation), emphasising the importance of dosimetric intercomparisons if clinical data is to be compared between different centers. Measurements with the Exradin type 2M ionisation chamber have been repeated in the epithermal neutron beam in the same measurement configuration over the course of 10 years. The presented results exclude severe sensitivity changes to thermal neutrons that have been reported for this type of chamber. Microdosimetry and polymer gel dosimetry as complementary methods for epithermal neutron beam dosimetry are studied. For microdosimetry the comparison of results with ionisation chambers and computer simulation showed that the photon dose measured with microdosimetry was lower than with the two other methods. The disagreement was within the uncertainties. For neutron dose the simulation and microdosimetry results agreed within 10% while the ionisation chamber technique gave 10-30% lower neutron dose rates than the two other methods. The response of the BANG-3 gel was found to be linear for both photon and epithermal neutron beam irradiation. The dose distribution normalised to dose maximum measured by MAGIC polymer gel was found to agree well with the simulated result near the dose maximum while the spatial difference between measured and simulated 30% isodose line was more than 1 cm. In both the BANG-3 and MAGIC gel studies, the interpretation of the results was complicated by the presence of high-LET radiation.

Interprofessional education in clinical practice: Not a single vaccine

In increasingly complex health service environments, the quality of teamwork and co-operation between doctors, nurses and allied health professionals, is 'under the microscope'. Interprofessional education (IPE), a process whereby health professionals learn 'from, with and about each other', is advocated as a response to widespread calls for improved communication and collaboration between healthcare professionals. Although there is much that is commendable in IPE, the authors caution that the benefits may be overstated if too much is attributed to, or expected of, IPE activities. The authors propose that clarity is required around what can realistically be achieved. Furthermore, engagement with clinicians in the clinical practice setting who are instrumental in assisting students make sense of their knowledge through practice, is imperative for sustainable outcomes. © AHHA 2010.

Futility and the law: Knowledge, practice and attitudes of doctors in end of life care

Despite the potential harm to patients (and others) and the financial cost of providing futile treatment at the end of life, this practice occurs. This article reports on empirical research undertaken in Queensland that explores doctors’ perceptions about the law that governs futile treatment at the end of life, and the role it plays in medical practice. The findings reveal that doctors have poor knowledge of their legal obligations and powers when making decisions about withholding or withdrawing futile treatment at the end of life; their attitudes towards the law were largely negative; and the law affected their clinical practice and had or would cause them to provide futile treatment.