The Australian general public's perceptions of having a personally controlled electronic health record (PCEHR)

Objective The move internationally by Governments and other health providers to encourage patients to have their own electronic personal health record (e-PHRs) is growing exponentially. In Australia the initiative for a personally controlled electronic health record (known as PCEHR) is directed towards the public at large. The first objective of this study then, is to examine how individuals in the general population perceive the promoted idea of having a PCEHR. The second objective is to extend research on applying a theoretically derived consumer technology acceptance model to guide the research. Method An online survey was conducted to capture the perceptions and beliefs about having a PCEHR identified from technology acceptance models and extant literature. The survey was completed by 750 Queensland respondents, 97% of whom did not have a PCEHR at that time. The model was examined using exploratory factor analysis, regressions and mediation tests. Results Findings support eight of the 11 hypothesised relationships in the model. Perceived value and perceived risk were the two most important variables explaining attitude, with perceived usefulness and compatibility being weak but significant. The perception of risk was reduced through partial mediation from trust and privacy concerns. Additionally, web-self efficacy and ease of use partially mediate the relationship between attitude and intentions. Conclusions The findings represent a snapshot of the early stages of implementing this Australian initiative and captures the perceptions of Queenslanders who at present do not have a PCEHR. Findings show that while individuals appreciate the value of having this record, they do not appear to regard it as particularly useful at present, nor is it particularly compatible with their current engagement with e-services. Moreover, they will need to have any concerns about the risks alleviated, particularly through an increased sense of trust and reduction of privacy concerns. It is noted that although the respondents are non-adopters, they do not feel that they lack the necessary web skills to set up and use a PCEHR. To the best of our knowledge this is one of a very limited number of studies that examines a national level implementation of an e-PHR system, where take-up of the PCEHR is optional rather than a centralised, mandated requirement.

Surviving the electronic panopticon: New lessons in democracy, surveillance, and community in young adult fiction

The ability of new information and communication technologies to pierce previously impenetrable physical, personal, and social boundaries has particular relevance to contemporary society and young people as there is now more information that can be collected, accessed, and distributed about individuals and groups. The ability to know about each other has become a central feature of many young people’s lives. The need to know is further complicated by other questions – Who knows? What do they know? What are the implications of this knowledge?. These questions are a consequence of society having become more mobile and networked enabling increased surveillance, tracking, and spreading of dis/information. With the acceleration of new pervasive and immersive technologies, these questions have taken on a new urgency and significance that go beyond an Orwellian Big Brother scenario. This chapter extends Foucault’s notion of the panopticon to take account of the challenges of an AmI environment of smart networked devices. By drawing on examples of recent young adult fiction, I examine some of the ways in which these texts invite their readers to reflect and speculate on the uneasy relationship between surveillance and democracy and what this means for individual rights and freedom, and a sense of place and belonging.

Practices of literary tourism : an Australian case study

Purpose To present the results of tests for the development of literary trails for domestic visitors and tourists in Brisbane, Queensland, and to situate these findings in the context of recent state government policy changes in relation to culture, community engagement and the environment. Design Broadly cultural studies: the article analyses changes in international and national cultural tourism and Queensland based issues before presenting the research findings. Findings a gap in tourist and cultural development models exists for the implementation of a network of sustainable literary trails in Brisbane--this model can be extended to regions around the state to meet the demands of the new tourist. Limitations Queensland weather and Australian distance which will require a regional approach that networks with transport and community hubs. Practical implications the research has produced new software for the use of self-guided walks; the locations for two specific area trails; and the involvement of the State Library of Queensland as a “hub” for the trails. Substantial support exists for further development in advanced locative media and gaming. Social implications the research demonstrates the importance of developing a sense of place that relates to culture, literary history and community for tourists, as well as the potential for community engagement.

A glossary of bodily responses

A collaborative video with Avril Huddy where two viewpoints, performer and documenter, were presented simultaneously to investigate Arakawa and Gin’s notion of “boundary-swaying”. In this performance-work, the performer influences what the camera is able to capture by engaging the documenter in a form of improvised dance. The performer’s movements appear impulsive and unpredictable, testing ways for the documenter to frame the performer’s movement. The images revealed by the documenter’s camera reflect a complexity of moments and co-incidences, evoking a sense of the performer’s embodied thinking within improvised movement. While a second camera uses a conventional wide angle shot to document the unfolding of the performance-work and track the connection between the documenter and the performer. While the performance-work itself is still highly-experimental, the ideas underpinning this exploration suggest how future investigations integrating more sensitive technology such as motion capture and tracking devises may be investigated. This performance-work formed part of the Creative Response Exhibition curated by Alan Prohm, Bill Lavender and Jason Nelson and a peer-review committee as part of the proceedings of the AG3 Online: Third International Arakawa and Gins Architecture and Philosophy Conference, hosted by the Centre for Public Culture and Ideas at Griffith University.

Evidence of associations between cytokine gene polymorphisms and quality of life in patients with cancer and their family caregivers

PURPOSE/OBJECTIVES: To identify latent classes of individuals with distinct quality-of-life (QOL) trajectories, to evaluate for differences in demographic characteristics between the latent classes, and to evaluate for variations in pro- and anti-inflammatory cytokine genes between the latent classes. DESIGN: Descriptive, longitudinal study. SETTING: Two radiation therapy departments located in a comprehensive cancer center and a community-based oncology program in northern California. SAMPLE: 168 outpatients with prostate, breast, brain, or lung cancer and 85 of their family caregivers (FCs). METHODS: Growth mixture modeling (GMM) was employed to identify latent classes of individuals based on QOL scores measured prior to, during, and for four months following completion of radiation therapy. Single nucleotide polymorphisms (SNPs) and haplotypes in 16 candidate cytokine genes were tested between the latent classes. Logistic regression was used to evaluate the relationships among genotypic and phenotypic characteristics and QOL GMM group membership. MAIN RESEARCH VARIABLES: QOL latent class membership and variations in cytokine genes. FINDINGS: Two latent QOL classes were found: higher and lower. Patients and FCs who were younger, identified with an ethnic minority group, had poorer functional status, or had children living at home were more likely to belong to the lower QOL class. After controlling for significant covariates, between-group differences were found in SNPs in interleukin 1 receptor 2 (IL1R2) and nuclear factor kappa beta 2 (NFKB2). For IL1R2, carrying one or two doses of the rare C allele was associated with decreased odds of belonging to the lower QOL class. For NFKB2, carriers with two doses of the rare G allele were more likely to belong to the lower QOL class. CONCLUSIONS: Unique genetic markers in cytokine genes may partially explain interindividual variability in QOL. IMPLICATIONS FOR NURSING: Determination of high-risk characteristics and unique genetic markers would allow for earlier identification of patients with cancer and FCs at higher risk for poorer QOL. Knowledge of these risk factors could assist in the development of more targeted clinical or supportive care interventions for those identified.

The ethics, aesthetics and practical politics of ownership in co-creative media

What is ‘best practice’ when it comes to managing intellectual property rights in participatory media content? As commercial media and entertainment business models have increasingly come to rely upon the networked productivity of end-users (Banks and Humphreys 2008) this question has been framed as a problem of creative labour made all the more precarious by changing employment patterns and work cultures of knowledge-intensive societies and globalising economies (Banks, Gill and Taylor 2014). This paper considers how the problems of ownership are addressed in non-commercial, community-based arts and media contexts. Problems of labour are also manifest in these contexts (for example, reliance on volunteer labour and uncertain economic reward for creative excellence). Nonetheless, managing intellectual property rights in collaborative creative works that are created in community media and arts contexts is no less challenging or complex than in commercial contexts. This paper takes as its focus a particular participatory media practice known as ‘digital storytelling’. The digital storytelling method, formalised by the Centre for Digital Storytelling (CDS) from the mid-1990s, has been internationally adopted and adapted for use in an open-ended variety of community arts, education, health and allied services settings (Hartley and McWilliam 2009; Lambert 2013; Lundby 2008; Thumin 2012). It provides a useful point of departure for thinking about a range of collaborative media production practices that seek to address participation ‘gaps’ (Jenkins 2006). However the outputs of these activities, including digital stories, cannot be fully understood or accurately described as user-generated content. For this reason, digital storytelling is taken here to belong to a category of participatory media activity that has been described as ‘co-creative’ media (Spurgeon 2013) in order to improve understanding of the conditions of mediated and mediatized participation (Couldry 2008). This paper reports on a survey of the actual copyrighting practices of cultural institutions and community-based media arts practitioners that work with digital storytelling and similar participatory content creation methods. This survey finds that although there is a preference for Creative Commons licensing a great variety of approaches are taken to managing intellectual property rights in co-creative media. These range from the use of Creative Commons licences (for example, Lambert 2013, p.193) to retention of full copyrights by storytellers, to retention of certain rights by facilitating organisations (for example, broadcast rights by community radio stations and public service broadcasters), and a range of other shared rights arrangements between professional creative practitioners, the individual storytellers and communities with which they collaborate, media outlets, exhibitors and funders. This paper also considers how aesthetic and ethical considerations shape responses to questions of intellectual property rights in community media arts contexts. For example, embedded in the CDS digital storytelling method is ‘a critique of power and the numerous ways that rank is unconsciously expressed in engagements between classes, races and gender’ (Lambert 117). The CDS method privileges the interests of the storyteller and, through a transformative workshop process, aims to generate original individual stories that, in turn, reflect self-awareness of ‘how much the way we live is scripted by history, by social and cultural norms, by our own unique journey through a contradictory, and at times hostile, world’ (Lambert 118). Such a critical approach is characteristic of co-creative media practices. It extends to a heightened awareness of the risks of ‘story theft’ and the challenges of ownership and informs ideas of ‘best practice’ amongst creative practitioners, teaching artists and community media producers, along with commitments to achieving equitable solutions for all participants in co-creative media practice (for example, Lyons-Reid and Kuddell nd.). Yet, there is surprisingly little written about the challenges of managing intellectual property produced in co-creative media activities. A dialogic sense of ownership in stories has been identified as an indicator of successful digital storytelling practice (Hayes and Matusov 2005) and is helpful to grounding the more abstract claims of empowerment for social participation that are associated with co-creative methods. Contrary to the ‘change from below’ philosophy that underpins much thinking about co-creative media, however, discussions of intellectual property usually focus on how methods such as digital storytelling contribute to the formation of copyright law-compliant subjects, particularly when used in educational settings (for example, Ohler nd.). This also exposes the reliance of co-creative methods on the creative assets storytellers (rather than on the copyrighted materials of the media cultures of storytellers) as a pragmatic response to the constraints that intellectual property right laws impose on the entire category of participatory media. At the level of practical politics, it also becomes apparent that co-creative media practitioners and storytellers located in copyright jurisdictions governed by ‘fair use’ principles have much greater creative flexibility than those located in jurisdictions governed by ‘fair dealing’ principles.

Degree of value alignment : a grounded theory of rural nurse resignations

INTRODUCTION: The shortage of nurses willing to work in rural Australian healthcare settings continues to worsen. Australian rural areas have a lower retention rate of nurses than metropolitan counterparts, with more remote communities experiencing an even higher turnover of nursing staff. When retention rates are lower, patient outcomes are known to be poorer. This article reports a study that sought to explore the reasons why registered nurses resign from rural hospitals in the state of New South Wales, Australia. METHODS: Using grounded theory methods, this study explored the reasons why registered nurses resigned from New South Wales rural hospitals. Data were collected from 12 participants using semi-structured interviews; each participant was a registered nurse who had resigned from a rural hospital. Nurses who had resigned due to retirement, relocation or maternity leave were excluded. Interviews were transcribed verbatim and imported into NVivo software. The constant comparative method of data collection and analysis was followed until a core category emerged. RESULTS: Nurses resigned from rural hospitals when their personal value of how nursing should occur conflicted with the hospital's organisational values driving the practice of nursing. These conflicting values led to a change in the degree of value alignment between the nurse and hospital. The degree of value alignment occurred in three dynamic stages that nurses moved through prior to resigning. The first stage, sharing values, was a time when a nurse and a hospital shared similar values. The second stage was conceding values where, due to perceived changes in a hospital's values, a nurse felt that patient care became compromised and this led to a divergence of values. The final stage was resigning, a stage where a nurse 'gave up' as they felt that their professional integrity was severely compromised. The findings revealed that when a nurse and organisational values were not aligned, conflict was created for a nurse about how they could perform nursing that aligned with their internalised professional values and integrity. Resignation occurred when nurses were unable to realign their personal values to changed organisational values - the organisational values changed due to rural area health service restructures, centralisation of budgets and resources, cumbersome hierarchies and management structures that inhibited communication and decision making, out-dated and ineffective operating systems, insufficient and inexperienced staff, bullying, and a lack of connectedness and shared vision. CONCLUSIONS: To fully comprehend rural nurse resignations, this study identified three stages that nurses move through prior to resignation. Effective retention strategies for the nursing workforce should address contributors to a decrease in value alignment and work towards encouraging the coalescence of nurses' and hospitals' values. It is imperative that strategies enable nurses to provide high quality patient care and promote a sense of connectedness and a shared vision between nurse and hospital. Senior managers need to have clear ways to articulate and imbue organisational values and be explicit in how these values accommodate nurses' values. Ward-level nurse managers have a significant responsibility to ensure that a hospital's values (both explicit and implicit) are incorporated into ward culture.

Triumphs and tribulations in the psychotherapy of schizophrenia : reflections on a pilot study of metacognitive narrative psychotherapy

Schizophrenia results in a profound disruption of one’s capacity to make sense of mental states, coherently narrate self-experiences, and meaningfully relate to others. While current treatment options for people with schizophrenia tend to be symptom-focused, experience in designing and implementing a study focusing on enhancing sense of self demonstrates the feasibility of developing and implementing models of treatment that prioritize the subjective distress and self-experience of people with schizophrenia. There is emerging research evidence, based upon dialogical theory of self, that posits the potential of people with deficits of self to engage in meaningful therapeutic relationships and work toward greater integrity of self and degrees of recovery. The challenge is to translate these ideas into a research methodology that can be successfully applied within therapeutic contexts with people who meet the diagnostic criteria for schizophrenia. Based upon dialogical theory, we developed a principle-based manual for metacognitive narrative psychotherapy: a psychological approach to the treatment of people with schizophrenia, which aims to enhance metacognitive capacity and ability to narrate self-experiences. Five phases of treatment were identified: (1) developing a therapeutic relationship, (2) eliciting narratives, (3) enhancing metacognitive capacity, (4) enriching narratives, and (5) living enriched stories. Proscribed practices were also identified. We then implemented the manual within a university clinic context. Six therapists were trained to implement the model and, in turn, provided therapy to 11 patients who completed 12 to 24 months of treatment. Participants were assessed on metacognitive capacity, narrative coherence, narrative richness, self-reported recovery, and symptomatology at three points in time over the course of therapy. Contrary to expectations, participants were highly engaged in the therapeutic process, with minimal dropout. Overall, over 75% of participants evidenced improvement in their level of recovery over the course of therapy. The manualization and outcome findings demonstrate the feasibility of applying such interventions to a broader clinical population.

The stewardship performance of forms of privatised water infrastructure

In this research Agency Theory and Stewardship Theory are used to analyse the relative performance of different forms of privitisation of water infrastructure and in doing so enriches understanding of previously underdeveloped aspects of both theories. The prior Agency Theory literature had established assumptions about the behaviour of principals and agents in contracts and these were found not to be correct in the context of contracts between modern government and private organisations. Agency theory was extended to include steward-like behaviour of an agent and Stewardship Theory was developed by the identification of factors within the contractual relationship which promote the sense of responsibility to the principal. The alliance, joint venture and Build Own Operate Transfer (BOOT) forms of privatisation were found to achieve stewardship of the infrastructure.

Identity in dialogue : identity as hyper-generalized personal sense

In this paper I propose that identity is momentary, fluid, and multiple while simultaneously providing us with a sense of sameness and continuity. Building on Valsiner’s ideas about human sense-making I suggest that we can reasonably deal with the multiplicity/unity paradox if we conceive of this process as resulting in the construction of a fuzzy field of hyper-generalized personal sense, which ordinarily functions as an implicit and unspeakable background of our everyday functioning, while being constantly re-created through momentary instances of foregrounded and explicit identity-dialogues. I illustrate the ideas put forward in the paper by analysing a case of a young woman experiencing a change in her being. Finally, in an attempt to illustrate and further develop the case I introduce a metaphor of carpet-weaving as an apposite image for thinking about identity as a process of a multiple and fragmented, yet also a united and constant being.

Challenges confronting career-changing beginning teachers : a qualitative study of professional scientists becoming science teachers

Recruitment of highly qualified science and mathematics graduates has become a widespread strategy to enhance the quality of education in the field of STEM. However, attrition rates are very high suggesting preservice education programs are not preparing them well for the career change. We analyse the experiences of professionals who are scientists and have decided to change careers to become teachers. The study followed a group of professionals who undertook a one-year preservice teacher education course and were employed by secondary schools on graduation. We examined these teachers’ experiences through the lens of self-determination theory, which posits autonomy, confidence and relatedness are important in achieving job satisfaction. The findings indicated that the successful teachers were able to achieve a sense of autonomy and confidence, and, in particular, had established strong relationships with colleagues. However, the unique challenges facing career-change professionals were often overlooked by administrators and colleagues. Opportunities to build a sense of relatedness in their new profession were often absent. The failure to establish supportive relationships was decisive in some teachers leaving the profession. The findings have implications for both pre-service and professional inservice programs and the role that administrators play in supporting career-change teachers.

Observing privacy, modesty and hospitality in the home domain : three case studies of Muslim homes in Brisbane, Australia

A home embodies a sensorial space that is layered with personal memories and traces of history. The success of a home in providing a strong sense of place depends on various factors such as geographical location, climatic conditions, and occupants’ world-views and perceptions. This paper explores Muslims’ perceptions of privacy, modesty and hospitality within their homes through their lived experiences. This case study focuses on three Muslim families living in Australian designed homes within the same suburb of Brisbane, Australia. The study provides prefatory insight into the ways in which these families perform their daily activities and entertain their guests without jeopardizing their privacy needs. The study examines the significance of modesty in the design of Muslim homes as a means by which family members are able to achieve optimum privacy while simultaneously extending hospitality to guests inside and outside their homes. The findings of this study provide opportunities too, for expanding research into culturally adaptable housing systems to help meet the changing needs of Australian multicultural society.

Barbara's story : a thematic analysis of a relative's reflection of being in the intensive care unit

Aim The aim of this reflective account is to provide a view of the intensive care unit (ICU) relative’s experiences of supporting and being supported in the ICU. Background Understanding the relatives’ experiences of ICU is important especially because a recent work has identified the potential for this group to develop post-traumatic stress disorder, a condition that is normally equated with the ICU survivor. Design A thematic analysis was used in identifying emerging themes that would be significant in an ICU nursing context. Setting The incident took place in two 8-bedded ICUs (Private and National Health Service) in October. Results Two emergent themes were identified from the reflective story – fear of the technological environment and feeling hopeless and helpless. Conclusion The use of relative stories as an insight into the live experiences of ICU relatives may give a deeper understanding of their life-world. The loneliness, anguish and pain of the ICU relative extends beyond the walls of the ICU, and this is often negated as the focus of the ICU team is the patient. Relevance to clinical practice: Developing strategies to support relatives might include the use of relative diaries used concurrently with patient diaries to support this groups recovery or at the very least a gaining a sense of understanding for their ICU experience. Relative follow-up clinics designed specifically to meet their needs where support and advice can be given by the ICU team, in addition to making timely and appropriate referrals to counselling services and perhaps involving spiritual leaders where appropriate.

An investigation into the effect of infrastructure on fly-in fly-out mining workers

Objective: To explore fly-in fly-out (FIFO) mining workers' attitudes towards the leisure time they spend in mining camps, the recreational and social aspects of mining camp culture, the camps' communal and recreational infrastructure and activities, and implications for health. Design: In-depth semistructured interviews. Setting: Individual interviews at locations convenient for each participant. Participants: A total of seven participants, one female and six males. The age group varied within 20–59 years. Marital status varied across participants. Main outcome measures: A qualitative approach was used to interview participants, with responses thematically analysed. Findings highlight how the recreational infrastructure and activities at mining camps impact participants' enjoyment of the camps and their feelings of community and social inclusion. Results: Three main areas of need were identified in the interviews, as follows: (i) on-site facilities and activities; (ii) the role of infrastructure in facilitating a sense of community; and (iii) barriers to social interaction. Conclusion: Recreational infrastructure and activities enhance the experience of FIFO workers at mining camps. The availability of quality recreational facilities helps promote social interaction, provides for greater social inclusion and improves the experience of mining camps for their temporary FIFO residents. The infrastructure also needs to allow for privacy and individual recreational activities, which participants identified as important emotional needs. Developing appropriate recreational infrastructure at mining camps would enhance social interactions among FIFO workers, improve their well-being and foster a sense of community. Introducing infrastructure to promote social and recreational activities could also reduce alcohol-related social exclusion.

Public space for street-scape theatrics : guerrilla spatial tactics and methods of urban hacking in Brisbane, Australia

It could be argued that architecture has an inherent social responsibility to enrich the urban and spatial environments for the city’s occupants. However how we define quality, and how ‘places’ can be designed to be fair and equitable, catering for individuals on a humanistic and psychological level, is often not clearly addressed. Lefebvre discusses the idea of the ‘right to the city’; the belief that public space design should facilitate freedom of expression and incite a sense of spatial ownership for its occupants in public/commercial precincts. Lefebvre also points out the importance of sensory experience in the urban environment. “Street-scape theatrics” are performative activities that summarise these two concepts, advocating the ‘right to the city’ by way of art as well as providing sensual engagement for city users. Literature discusses the importance of Street-scape Theatrics however few sources attempt to discuss this topic in terms of how to design these spaces/places to enhance the city on both a sensory and political level. This research, grounded in political theory, investigates the case of street music, in particular busking, in the city of Brisbane, Australia. Street culture is a notion that already exists in Brisbane, but it is heavily controlled especially in central locations. The study discusses how sensory experience of the urban environment in Brisbane can be enriched through the design for busking; multiple case studies, interviews, observations and thematic mappings provide data to gather an understanding of how street performers see and understand the built form. Results are sometime surprisingly incongruous with general assumptions in regards to street artist as well as the established political and ideological framework, supporting the idea that the best and most effective way of urban hacking is working within the system. Ultimately, it was found that the Central Business District in Brisbane, Australia, could adopt certain political and design tactics which attempt to reconcile systematic quality control with freedom of expression into the public/commercial sphere, realism upheld. This can bridge the gap between the micro scale of the body and the macro of the political economy through freedom of expression, thus celebrating the idiosyncratic nature of the city.