The right to choose an assisted death : time for legislation?

The legal framework that operates at the end of life in Australia needs to be reformed. • Voluntary euthanasia and assisted suicide are currently unlawful. • Both activities nevertheless occur not infrequently in Australia, in part because palliative care cannot relieve physical and psychological pain and suffering in all cases. • In this respect, the law is deficient. The law is also unfair because it doesn’t treat people equally. Some people can be helped to die on their own terms as a result of their knowledge and/or connections while some are able to hasten their death by the refusal of life-sustaining treatment. But others do not have access to the means for their life to end. • A very substantial majority of Australians have repeatedly expressed in public opinion polls their desire for law reform on these matters. Many are concerned at what they see is happening to their loved ones as they reach the end of their lives, and want the confidence that when their time comes they will be able to exercise choice in relation to assisted dying. • The most consistent reason advanced not to change the law is the need to protect the vulnerable. There is a concern that if the law allows voluntary euthanasia and assisted suicide for some people, it will be expanded and abused, including pressures being placed on highly dependent people and those with disabilities to agree to euthanasia. • But there is now a large body of experience in a number of international jurisdictions following the legalisation of voluntary euthanasia and/or assisted suicide. This shows that appropriate safeguards can be implemented to protect vulnerable people and prevent the abuse that opponents of assisted dying have feared. It reveals that assisted dying meets a real need among a small minority of people at the end of their lives. It also provides reassurance to people with terminal and incurable disease that they will not be left to suffer the indignities and discomfort of a nasty death. • Australia is an increasingly secular society. Strong opposition to assisted death by religious groups that is based on their belief in divine sanctity of all human life is not a justification for denying choice for those who do not share that belief. • It is now time for Australian legislators to respond to this concern and this experience by legislating to enhance the quality of death for those Australians who seek assisted dying.

Influencing the experience of people in urban public places through mobile mediated interactions

This study presents research findings to informthe design and development of innovativemobile services aiming to enable collocated people to interact with each other in public urban places. The main goal of this research is to provide applications and deliver guidelines to positively influence the user experience of different public urban places during everyday urban life. This study describes the design and evaluation of mobile content and services enabling mobile mediated interactions in an anonymous way. The research described in this thesis is threefold. First, this study investigates how Information and Communication Technology (ICT) can be utilised in particular urban public places to influence the experience of urban dwellers during everyday life. The research into urban residents and public places guides the design of three different technologies that form case studies to investigate and discover possibilities to digitally augment the public urban space and make the invisible data of our interactions in the urban environment visible. • Capital Music enables urban dwellers to listen to their music on their mobile devices as usual but also visualises the artworks of songs currently being played and listened to by other users in ones’ vicinity. • PlaceTagz uses QR codes printed on stickers that link to a digital message board enabling collocated users to interact with each other over time resulting in a place-based digital memory. • Sapporo World Window, Brisbane Hot Spots, and YourScreen are interactive content applications allowing people to share data with their mobile phones on public urban screens. The applications employ mobile phones to mediate interactions in form of location and video sharing. Second, this study sets out to explore the quality and nature of the experiences created through the developed and deployed case study applications. The development of a user experience framework for evaluating mobile mediated interactions in urban public places is described and applied within each case. Third, drawing on research from urban sociology, psychology, urban design, and the findings from this study, this thesis discusses how such interactions can have an impact on the urban experience.

Social Media Sites as Online Information Grounds : An exploratory study of the ways in which Information Technology (IT) professionals experience social media

Social media tools are often the result of innovations in Information Technology and developed by IT professionals and innovators. Nevertheless, IT professionals, many of whom are responsible for designing and building social media technologies, have not been investigated on how they themselves use or experience social media for professional purposes. This study will use Information Grounds Theory (Pettigrew, 1998) as a framework to study IT professionals’ experience in using social media for professional purposes. Information grounds facilitates the opportunistic discovery of information within social settings created temporarily at a place where people gather for a specific purpose (e.g., doctors’ waiting rooms, office tea rooms etc.), but the social atmosphere stimulates spontaneous sharing of information (Pettigrew, 1999). This study proposes that social media has the qualities that make it a rich information grounds; people participate from separate “places” in cyberspace in a synchronous manner in real-time, making it almost as dynamic and unplanned as physical information grounds. There is limited research on how social media platforms are perceived as a “place,” (a place to go to, a place to gather, or a place to be seen in) that is comparable to physical spaces. There is also no empirical study on how IT professionals use or “experience” social media. The data for this study is being collected through a study of IT professionals who currently use Twitter. A digital ethnography approach is being taken wherein the researcher uses online observations and “follows” the participants online and observes their behaviours and interactions on social media. Next, a sub-set of participants will be interviewed on their experiences with and within social media and how social media compares with traditional methods of information grounds, information communication, and collaborative environments. An Evolved Grounded Theory (Glaser, 1992) approach will be used to analyse tweets data and interviews and to map the findings against the Information Ground Theory. Findings from this study will provide foundational understanding of IT professionals’ experiences within social media, and can help both professionals and researchers understand this fast-evolving method of communications.

Using real-time authentic online learning scenarios to teach criminal intelligence

Criminal intelligence is an area of expertise highly sought-after internationally and within a variety of justice-related professions; however, producing university graduates with the requisite professional knowledge, as well as analytical, organisational and technical skills presents a pedagogical and technical challenge to university educators. The situation becomes even more challenging when students are undertaking their studies by distance education. This best practice session showcases the design of an online undergraduate unit for final year justice students which uses an evolving real-time criminal scenario as the focus of authentic learning activities in order to prepare students for graduate roles within the criminal intelligence and justice professions. Within the unit, students take on the role of criminal intelligence analysts, applying relevant theories, models and strategies to solve a complex but realistic crime and complete briefings and documentation to industry standards as their major summative assessment task. The session will demonstrate how the design of the online unit corresponds to authentic learning principles, and will specifically map the elements of the unit design to Herrington & Oliver’s instructional design framework for authentic learning (2000; Herrington & Herrington 2006). The session will show how a range of technologies was used to create a rich learning experience for students that could be easily maintained over multiple unit iterations without specialist technical support. The session will also discuss the unique pedagogical affordances and challenges implicated in the location of the unit within an online learning environment, and will reflect on some of the lessons learned from the development which may be relevant to other authentic online learning contexts.

Using real-time authentic online learning scenarios to teach criminal intelligence : presentation

Criminal intelligence is an area of expertise highly sought-after internationally and within a variety of justice-related professions; however, producing university graduates with the requisite professional knowledge, as well as analytical, organisational and technical skills presents a pedagogical and technical challenge to university educators. The situation becomes even more challenging when students are undertaking their studies by distance education. This best practice session showcases the design of an online undergraduate unit for final year justice students which uses an evolving real-time criminal scenario as the focus of authentic learning activities in order to prepare students for graduate roles within the criminal intelligence and justice professions. Within the unit, students take on the role of criminal intelligence analysts, applying relevant theories, models and strategies to solve a complex but realistic crime and complete briefings and documentation to industry standards as their major summative assessment task. The session will demonstrate how the design of the online unit corresponds to authentic learning principles, and will specifically map the elements of the unit design to Herrington & Oliver’s instructional design framework for authentic learning (2000; Herrington & Herrington 2006). The session will show how a range of technologies was used to create a rich learning experience for students that could be easily maintained over multiple unit iterations without specialist technical support. The session will also discuss the unique pedagogical affordances and challenges implicated in the location of the unit within an online learning environment, and will reflect on some of the lessons learned from the development which may be relevant to other authentic online learning contexts.

Time to change consumer involvement in nursing research

The experiences of people affected by cancer are at the very heart of nursing research efforts. Because much of our work is focused on understanding how to improve experiences and outcomes for people with cancer, it is easy for us to believe that our research is inherently "person centered" and thus collaborative. Let's reflect on what truly collaborative approaches to cancer nursing research could be like, and how we measure up to such goals. Collaboration between people affected by cancer (consumers) and nurses in research is much more than providing a voice for individuals as participants in a research study. Today, research governing bodies in many countries require us to seek a different kind of consumer participation, where consumers and researchers work in partnership with one another to shape decisions about research priorities, policies, and practices.1 Most granting bodies now require explanations of how consumer and community participation will occur within a study. Ethical imperatives and the concept of patient advocacy also require that we give more considered attention to what is meant by consumer involvement.2 Consumers provide perspective on what will be relevant, acceptable, feasible, and sensitive research, having lived the experience of cancer. As a result, they offer practical insights that can ensure the successful conduct and better outcomes from research. Some granting bodies now even allocate a proportion of final score or assign a "public value" weighting for a grant, to recognize the importance of consumer involvement and reflect the quality of patient involvement in all stages of the research process.3

Hybrid placemaking in the library : designing digital technology to enhance users’ on-site experience

This paper presents research findings and design strategies that illustrate how digital technology can be applied as a tool for hybrid placemaking in ways that would not be possible in purely digital or physical space. Digital technology has revolutionised the way people learn and gather new information. This trend has challenged the role of the library as a physical place, as well as the interplay of digital and physical aspects of the library. The paper provides an overview of how the penetration of digital technology into everyday life has affected the library as a place, both as designed by place makers, and, as perceived by library users. It then identifies a gap in current library research about the use of digital technology as a tool for placemaking, and reports results from a study of Gelatine – a custom built user check-in system that displays real-time user information on a set of public screens. Gelatine and its evaluation at The Edge, at State Library of Queensland illustrates how combining affordances of social, spatial and digital space can improve the connected learning experience among on-site visitors. Future design strategies involving gamifying the user experience in libraries are described based on Gelatine’s infrastructure. The presented design ideas and concepts are relevant for managers and designers of libraries as well as other informal, social learning environments.

Vehicle-to-vehicle real-time relative positioning using 5.9 GHz DSRC media

Vehicular accidents are one of the deadliest safety hazards and accordingly an immense concern of individuals and governments. Although, a wide range of active autonomous safety systems, such as advanced driving assistance and lane keeping support, are introduced to facilitate safer driving experience, these stand-alone systems have limited capabilities in providing safety. Therefore, cooperative vehicular systems were proposed to fulfill more safety requirements. Most cooperative vehicle-to-vehicle safety applications require relative positioning accuracy of decimeter level with an update rate of at least 10 Hz. These requirements cannot be met via direct navigation or differential positioning techniques. This paper studies a cooperative vehicle platform that aims to facilitate real-time relative positioning (RRP) among adjacent vehicles. The developed system is capable of exchanging both GPS position solutions and raw observations using RTCM-104 format over vehicular dedicated short range communication (DSRC) links. Real-time kinematic (RTK) positioning technique is integrated into the system to enable RRP to be served as an embedded real-time warning system. The 5.9 GHz DSRC technology is adopted as the communication channel among road-side units (RSUs) and on-board units (OBUs) to distribute GPS corrections data received from a nearby reference station via the Internet using cellular technologies, by means of RSUs, as well as to exchange the vehicular real-time GPS raw observation data. Ultimately, each receiving vehicle calculates relative positions of its neighbors to attain a RRP map. A series of real-world data collection experiments was conducted to explore the synergies of both DSRC and positioning systems. The results demonstrate a significant enhancement in precision and availability of relative positioning at mobile vehicles.

“Would you; could you; on a boat?” Wait-time and travel-time activities during river ferry journeys and their relationship to overall satisfaction in Brisbane Queensland

This study investigates travel behaviour and wait-time activities as a component of passenger satisfaction with public transport in Brisbane, Australia. Australian transport planners recognise a variety of benefits to encouraging a mode shift away from automobile travel in favour of active and public transport use. Efforts to increase public transport ridership have included introducing state of the art passenger information systems, improving physical station access, and integrating system pricing, routes and scheduling for train, bus and ferry. Previous research regarding satisfaction with public transport emphasizes technical dimensions of service quality, including the timing and reliability of service. Those factors might be especially significant for frequent (commuting) travellers who look to balance the cost and efficiency of their travel options. In contrast, infrequent (leisure) passengers may be more concerned with way finding and the sensory experience of the journey. Perhaps due to the small relative proportion of trips made by river ferry compared to bus and rail, this mode of public transport has not received as much attention in travel-behaviour research. This case study of Brisbane’s river ferry system examines ferry passengers at selected terminals during peak and off-peak travel times to find out how travel behaviours and activities correlate to satisfaction with ferry travel. Data include 416 questionnaires completed by passengers intercepted during wait times at seven CityCat terminals in Brisbane. Descriptive statistical analysis revealed associations between specific wait time activities and satisfaction levels that could inform planners seeking to increase ridership and quality of life through ferry-oriented development.

Young women's recent experience of labour and birth care in Queensland

Background Young parenthood continues to be an issue of concern in terms of clinical and psychosocial outcomes for mothers and their babies, with higher rates of medical complications such as preterm labour and hypertensive disease and a higher risk of depression. The aim of this study was to investigate how young age impacts on women's experience of intrapartum care. Methods Secondary analysis of data collected in a population based survey of women who had recently given birth in Queensland, comparing clinical and interpersonal aspects of the intrapartum maternity care experience for 237 eligible women aged 15–20 years and 6534 aged more than 20 years. Descriptive and multivariate analyses were undertaken. Results In the univariate analysis a number of variables were significantly associated with clinical aspects of labour and birth and perceptions of care: young women were more likely to birth in a public facility, to travel for birth and to live in less economically advantaged areas, to have a normal vaginal birth and to have one carer through labour. They were also less likely to report being treated with respect and kindness and talked to in a way they could understand. In logistic regression models, after adjustment for parity, other socio-demographic factors and mode of birth, younger mothers were still more likely to birth in a public facility, to travel for birth, to be more critical about interpersonal and aspects of care and the hospital or birth centre environment. Conclusion This study shows how experience of care during labour and birth is different for young women. Young women reported poorer quality interpersonal care which may well reflect an inferior care experience and stereotyping by health professionals, indicating a need for more effective staff engagement with young women at this time.

Encouraging, assisting, and time to eat : comparison of mealtime assistance interventions in elderly medical inpatients

BACKGROUND: The prevalence of protein-energy malnutrition in older adults is reported to be as high as 60% and is associated with poor health outcomes. Inadequate feeding assistance and mealtime interruptions may contribute to malnutrition and poor nutritional intake during hospitalisation. Despite being widely implemented in practice in the United Kingdom and increasingly in Australia, there have been few studies examining the impact of strategies such as Protected Mealtimes and dedicated feeding assistant roles on nutritional outcomes of elderly inpatients. AIMS: The aim of this research was to implement and compare three system-level interventions designed to specifically address mealtime barriers and improve energy intakes of medical inpatients aged ≥65 years. This research also aimed to evaluate the sustainability of any changes to mealtime routines six months post-intervention and to gain an understanding of staff perceptions of the post-intervention mealtime experience. METHODS: Three mealtime assistance interventions were implemented in three medical wards at Royal Brisbane and Women's Hospital: AIN-only: Additional assistant-in-nursing (AIN) with dedicated nutrition role. PM-only: Multidisciplinary approach to meals, including Protected Mealtimes. PM+AIN: Combined intervention: AIN + multidisciplinary approach to meals. An action research approach was used to carefully design and implement the three interventions in partnership with ward staff and managers. Significant time was spent in consultation with staff throughout the implementation period to facilitate ownership of the interventions and increase likelihood of successful implementation. A pre-post design was used to compare the implementation and nutritional outcomes of each intervention to a pre-intervention group. Using the same wards, eligible participants (medical inpatients aged ≥65 years) were recruited to the preintervention group between November 2007 and March 2008 and to the intervention groups between January and June 2009. The primary nutritional outcome was daily energy and protein intake, which was determined by visually estimating plate waste at each meal and mid-meal on Day 4 of admission. Energy and protein intakes were compared between the pre and post intervention groups. Data were collected on a range of covariates (demographics, nutritional status and known risk factors for poor food intake), which allowed for multivariate analysis of the impact of the interventions on nutritional intake. The provision of mealtime assistance to participants and activities of ward staff (including mealtime interruptions) were observed in the pre-intervention and intervention groups, with staff observations repeated six months post-intervention. Focus groups were conducted with nursing and allied health staff in June 2009 to explore their attitudes and behaviours in response to the three mealtime interventions. These focus group discussions were analysed using thematic analysis. RESULTS: A total of 254 participants were recruited to the study (pre-intervention: n=115, AIN-only: n=58, PM-only: n=39, PM+AIN: n=42). Participants had a mean age of 80 years (SD 8), and 40% (n=101) were malnourished on hospital admission, 50% (n=108) had anorexia and 38% (n=97) required some assistance at mealtimes. Occasions of mealtime assistance significantly increased in all interventions (p<0.01). However, no change was seen in mealtime interruptions. No significant difference was seen in mean total energy and protein intake between the preintervention and intervention groups. However, when total kilojoule intake was compared with estimated requirements at the individual level, participants in the intervention groups were more likely to achieve adequate energy intake (OR=3.4, p=0.01), with no difference noted between interventions (p=0.29). Despite small improvements in nutritional adequacy, the majority of participants in the intervention groups (76%, n=103) had inadequate energy intakes to meet their estimated energy requirements. Patients with cognitive impairment or feeding dependency appeared to gain substantial benefit from mealtime assistance interventions. The increase in occasions of mealtime assistance by nursing staff during the intervention period was maintained six-months post-intervention. Staff focus groups highlighted the importance of clearly designating and defining mealtime responsibilities in order to provide adequate mealtime care. While the purpose of the dedicated feeding assistant was to increase levels of mealtime assistance, staff indicated that responsibility for mealtime duties may have merely shifted from nursing staff to the assistant. Implementing the multidisciplinary interventions empowered nursing staff to "protect" the mealtime from external interruptions, but further work is required to empower nurses to prioritise mealtime activities within their own work schedules. Staff reported an increase in the profile of nutritional care on all wards, with additional non-nutritional benefits noted including improved mobility and functional independence, and better identification of swallowing difficulties. IMPLICATIONS: The PhD research provides clinicians with practical strategies to immediately introduce change to deliver better mealtime care in the hospital setting, and, as such, has initiated local and state-wide roll-out of mealtime assistance programs. Improved nutritional intakes of elderly inpatients was observed; however given the modest effect size and reducing lengths of hospital stays, better nutritional outcomes may be achieved by targeting the hospital-to-home transition period. Findings from this study suggest that mealtime assistance interventions for elderly inpatients with cognitive impairment and/or functional dependency show promise.

Platinum-based chemotherapy in metastatic breast cancer : the Leicester (UK) experience

Aims: After failure of anthracycline- and taxane-based chemotherapy in metastatic breast cancer, treatment options until recently were limited. Until the introduction of capecitabine and vinorelbine, no standard regimen was available. We conducted a retrospective study to determine the efficacy and toxicity of platinum-based chemotherapy in metastatic breast cancer. Materials and methods: Forty-two women with metastatic breast cancer previously treated with anthracyclines (93%) and/or taxanes (36%) received mitomycin-vinblastine-cisplatin (MVP) (n = 23), or cisplatin-etoposide (PE) (n = 19), as first-, second- and third-line treatment at a tertiary referral centre between 1997 and 2002. Chemotherapy was given every 3 weeks as follows: mitomycin-C (8 mg/m 2) (cycles 1, 2, 4, 6), vinblastine (6 mg/m 2), and cisplatin (50 mg/m 2) all on day 1; and cisplatin (75 mg/m 2) and etoposide (100 mg/m 2) on day 1 and (100 mg/m 2) orally twice a day on days 2-3. Results: The response rate for 40 evaluable patients (MVP: n = 23; PE: n = 17) was 18% (95% confidence interval [CI]: 9-32%). The response rate to MVP was 13% (95% CI: 5-32%, one complete and two partial responses) and to PE 24% (10-47%, four partial responses). Disease stabilised in 43% (26-63%) and 47% (26-69%) of women treated with MVP and PE, respectively. After a median follow-up of 18 months, 37 women (MVP: n = 19; PE: n = 18) died from their disease. Median (range) progression-free survival and overall survival were 6 months (0.4-18.7) and 9.9 months (1.3-40.8), respectively. Median progression-free survival for the MVP and PE groups was 5.5 and 6.2 months (Log-rank, P = 0.82), and median overall survival was 10.2 and 9.4 months (Log-rank, P = 0.46), respectively. The main toxicity was myelosuppression. Grades 3-4 neutropenia was more common in women treated with PE than in women treated with MVP (74% vs 30%; P = 0.012), but the incidence of neutropenic sepsis, relative to the number of chemotherapy cycles, was low (7% overall). The toxicity-related hospitalisation rate was 1.2 admissions per six cycles of chemotherapy. No treatment-related deaths occurred. MVP and PE chemotherapy have modest activity and are safe in women with metastatic breast cancer. © 2005 The Royal College of Radiologists. Published by Elsevier Ltd. All rights reserved.

Evolving progress in oncologic and operative outcomes for esophageal and junctional cancer : lessons from the experience of a high-volume center

Objective: Modern series from high-volume esophageal centers report an approximate 40% 5-year survival in patients treated with curative intent and postoperative mortality rates of less than 4%. An objective analysis of factors that underpin current benchmarks within high-volume centers has not been performed. Methods: Three time periods were studied, 1990 to 1998 (period 1), 1999 to 2003 (period 2), and 2004 to 2008 (period 3), in which 471, 254, and 342 patients, respectively, with esophageal cancer were treated with curative intent. All data were prospectively recorded, and staging, pathology, treatment, operative, and oncologic outcomes were compared. Results: Five-year disease-specific survival was 28%, 35%, and 44%, and in-hospital postoperative mortality was 6.7%, 4.4%, and 1.7% for periods 1 to 3, respectively (P < .001). Period 3, compared with periods 1 and 2, respectively, was associated with significantly (P < .001) more early tumors (17% vs 4% and 6%), higher nodal yields (median 22 vs 11 and 18), and a higher R0 rate in surgically treated patients (81% vs 73% and 75%). The use of multimodal therapy increased (P < .05) across time periods. By multivariate analysis, age, T stage, N stage, vascular invasion, R status, and time period were significantly (P < .0001) associated with outcome. Conclusions: Improved survival with localized esophageal cancer in the modern era may reflect an increase of early tumors and optimized staging. Important surgical and pathologic standards, including a higher R0 resection rate and nodal yields, and lower postoperative mortality, were also observed. Copyright © 2012 by The American Association for Thoracic Surgery.

Making orchids – Gardening an intersex experience on videotape [In German - Orchideen Züchten. Eine inter Erfahrung auf Film]

In 2004, my thirtieth year of life, I began to develop and produce a documentary about the lived experience of being intersex. At the time, I didn’t ever expect the film would be autobiographical in nature. I’d known I was intersex since I was 17, and aware of my difference for many years prior, and I’d been making and presenting documentaries for almost as long, yet the idea to expose myself so publicly was frightening to me. However, I realised I couldn’t expect others to step in front of the lens when I didn’t have the courage to do so myself. The final result was Orchids: My Intersex Adventure, which maps my intersex journey from shame, stigma and secrecy to self‐acceptance. The film has now been broadcast on television sets around the world. It has also won many awards and appeared in numerous film festivals....

From “anytime, anywhere” to “here and now”: place and time restrictions in mobile narratives to enhance situated engagement of mobile users

The usage of the mobile Internet has increased tremendously within the last couple of years, and thereby the vision of accessing information anytime, anywhere has become more realistic and a dominant design principle for providing content. However, this study challenges this paradigm of unlimited and unrestricted access, and explores the question whether constraints and restrictions can positively influence the motivation and enticement of mobile users to engage with location-specific content. Restrictions, such as a particular time or location that gives a user access to content, may be used to foster participation and engagement, as well as to support content production and to enhance the user’s experience. In order to explore this, a Mobile Narrative and a Narrative Map have been created. For the former, the access to individual chapters of the story was restricted. Authors can specify constraints, such as a location or time, which need to be met by the reader if they want to read the story. This concept allows creative writers of the story to exploit the fact that the reader’s context is known, by intensifying the user experience and integrating this knowledge into the writing process. The latter, the Narrative Map, provides users with extracts from stories or information snippets about authors at relevant locations. In both concepts, a feedback channel was also integrated, on which location, time, and size constraints were imposed. In a user-centred design process involving authors and potential readers, those concepts have been implemented, followed by an evaluation comprising four user studies. The results show that restrictions and constraints can indeed lead to more enticing and engaging user experiences, and restricted contribution opportunities can lead to a higher motivation to participate as well as to an improved quality of submissions. These findings are relevant for future developments in the area of mobile narratives and creative writing, as well as for common mobile services that aim for enticing user experiences.