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.

Business process management : theory on progression and maturity

Business Process Management (BPM) is a topic that continues to grow in significance as organisations seek to gain and sustain competitive advantage in an increasingly global environment. Despite anecdotal evidence of organisations improving performance by pursuing a BPM approach, there is little theory that explains and substantiates this relationship. This study provides the first theory on the progression and maturity of BPM Initiatives within organisations and provides a vital starting block upon which future research in this area can build. The Researcher starts by clearly defining three key terms (BPM Initiative, BPM Progression and BPM Maturity), showing the relationship between these three concepts and proposing their relationship with Organisational Performance. The Researcher then combines extant literature and use of the Delphi Technique and the case study method to explore the progression and measurement of the BPM Initiatives within organisations. The study builds upon the principles of general theories including the Punctuated Equilibrium Model and Dynamic Capabilities to present theory on BPM Progression and BPM Maturity. Using the BPM Capability Framework developed through an international Delphi study series, the Researcher shows how the specific organisational context influences which capability areas an organisation chooses to progress. By comparing five separate organisations over an extended time the Researcher is able to show that, despite this disparity, there is some evidence of consistency with regard to the capability areas progressed. This suggests that subsequent identification of progression paths may be possible. The study also shows that the approach and scope taken to BPM within each organisation is a likely predictor of such paths. These outcomes result in the proposal of a formative model for measuring BPM Maturity.

The impact of organisational culture on the project selection process : The case of public infrastructure project in Indonesia

Project selection is a complex decision-making process as it involves multiple objectives, constraints and stakeholders. Understanding the organisation, in particular organisational culture, is an essential stage in improving decision-making process. The influences of organisational culture on decision-making can be seen in the way people work as a team, act and cooperate in their teamwork to achieve the set goals, and also in how people think, prioritize and decide. This paper aims to give evidence of the impact of organisational culture on the decision-making process in project selection, in the Indonesian context. Data was collected from a questionnaire survey developed based on the existing models of organisational culture (Denison 1990, Hofstede 2001, and Glaser et al 1987). Four main cultural traits (involvement, consistency, mission and power-distance) were selected and employed to examine the influence of organisational culture on the effectiveness of decision-making in the current Indonesian project selection processes. The results reveal that there are differences in organisational cultures for two organisations in three provinces. It also suggests that organisational culture (particularly the traits of ‘involvement’, ‘consistency’ and ‘mission’) contribute to the effectiveness of decision-making in the selected cases.

Improving service innovation through structured process-oriented knowledge infrastructure design

Formalised service innovation is a central tenet of enterprise systems lifecycle phases. Event driven process models extended with knowledge objects are found to be not useful in early lifecycle phases. When an upgrade is required, a map of the knowledge infrastructure is needed to better design further service innovation because functional maps no longer adequately describe the context adequately. By looking at formal changes to business processes as service innovations, and recognising the knowledge infrastructure inherent in services generally, changes driven through technology such as ES can be better understood with the application of frameworks such as B-KIDE.

Virtual world process perspective visualization

Product Lifecycle Management has been developed as an approach to providing timely engineering information. However, the number of domain specializations within manufacturing makes such information communication disjointed, inefficient and error-prone. In this paper we propose an immersive 3D visualization of linked domain- specific information views for improving and accelerating communication processes in Product Lifecycle Management. With a common and yet understandable visualization of several domain views, interconnections and dependencies become obvious. The conceptual framework presented here links domain-specific information extracts from Product Lifecycle Management systems with each other and displays them via an integrated 3D representation scheme. We expect that this visualization framework should support holistic tactical decision making processes between domain-experts in operational and tactical manufacturing scenarios.

Tensor query expansion : a cognitively motivated relevance model

In information retrieval, a user's query is often not a complete representation of their real information need. The user's information need is a cognitive construction, however the use of cognitive models to perform query expansion have had little study. In this paper, we present a cognitively motivated query expansion technique that uses semantic features for use in ad hoc retrieval. This model is evaluated against a state-of-the-art query expansion technique. The results show our approach provides significant improvements in retrieval effectiveness for the TREC data sets tested.

The development and evaluation of a culturally affirmative counselling model for deaf clients in Australia

In Australia, there is only one, newly established, dedicated mental health service catering specifically for the signing *Deaf community. It is staffed by four part-time hearing professionals and based in Brisbane. There are currently no Deaf psychologists or psychiatrists and there is no valid or reliable empirical evidence on outcomes for Deaf people accessing specialised or mainstream mental health services. Further compounding these issues, is the fact that there are no sign language versions of the most common standardised mental health or psychological instruments available to clinicians in Australia. Contemporary counselling literature is acknowledging the role of the therapeutic alliance and the impact of 'common factors' on therapeutic outcomes. However, these issues are complicated by the relationship between the Deaf client and the hearing therapist being a cross-cultural exchange. The disability model of deafness is contentious and few professionals in Australia have the requisite knowledge and understanding of deafness from a cultural perspective to attend to the therapeutic relationship with this in mind. Consequently, Deaf people are severely disadvantaged by the current lack of services, resources and skilled professionals in the field of deafness and psychology in this country. The primary aim of the following program of research has been to propose a model for culturally affirmative service delivery and to provide clinicians with tools to evaluate the effect of their therapeutic work with Deaf people seeking mental health treatment. The research document is presented as a thesis by publication and comprises four specific objectives formulated in response to the lack of existing services and resources. The first objective was to explore the use of social constructionist counselling techniques and a reflecting team with Deaf clients, hearing therapists and an interpreter. Following the establishment of a pilot counselling clinic, indepth semi-structured interviews were conducted with two long-term clients following the one year pilot of this service. These interviews generated recommendations for the development of a new 'enriched' model of counselling to be implemented and evaluated in later stages of the research program. The second objective was to identify appropriate psychometric measures that could be translated into Australian Sign Language (Auslan) for research into efficacy, effectiveness and counselling outcomes. Two instruments were identified as potentially suitable; the Outcome Rating Scale (ORS), a measure of global functioning, and the Session Rating Scale (SRS), a measure of therapeutic alliance. A specialised team of bi-lingual and bi-cultural interpreters, native signers and the primary researcher for this thesis, produced the ORS-Auslan and the SRS-Auslan in DVD format, using the translation and back-translation process. The third objective was to establish the validity and reliability of these new Auslan measures based on normative data from the Deaf community. Data from the ORS-Auslan was collected from one clinical and one non-clinical sample of Deaf people. Statistical analyses revealed that the ORS-Auslan is reliable, valid and adequately distinguishes between clinical and non-clinical presentations. Furthermore, construct validity has been established using a yet to be validated sign language version of the Depression, Anxiety and Stress Scale-21 items (DASS-21), providing a platform for further research using the DASS-21 with Deaf people. The fourth objective was to evaluate counselling outcomes following the implementation of an enriched counselling service, based on the findings generated by the first objective, and using the newly translated Auslan measures. A second university counselling clinic was established and implemented over the course of one year. Practice-based evidence guided the research and the ORS-Auslan and the SRS-Auslan were administered at every session and provided outcome data on Deaf clients' global functioning. Data from six clients over the course of ten months indicated that this culturally affirmative model was an effective approach for these six clients. This is the first time that outcome data have been collected in Australia using valid and reliable Auslan measures to establish preliminary evidence for the effectiveness of any therapeutic intervention for clinical work with adult, signing Deaf clients. The research generated by this thesis contributes theoretical knowledge, professional development and practical resources that can be used by a variety of mental health clinicians in the context of mental health service delivery to Deaf clients in Australia.

Three theories and a process: engaging community

This study examines a dialogue process managers can use to explore community attitudes. The objectives of the research are to develop a dialogue process that engages community audiences on climate mitigation strategies. Secondly, to understand participants perspectives and potential reactions in particular to underground storage of CO2 and determine the strategies that most effectively engage people in dialogue to enable the climate change debate to move forward. Finally, to develop a dialogue process that can be used by managers on other politically sensitive topics. Knowledge of the dynamics of psychosocial relationships and communication between stakeholders contributed to increased understanding of the issues. The key findings of this study indicate that the public can be engaged in dialogue on the issue of CO2 capture and storage and low emission technologies without engendering adverse reactions. The dialogue process is critical to participant’s engagement and led to behaviour change in energy use.

Some reflections on winning an ALTC Teaching Excellence Award

Since 1996, quality teaching has been recognised in the Australian Awards for University Teaching (AAUT), administered first by the Australian government Department of Education, and then from 2000, by the Australian Universities Teaching Committee (AUTC). In 2005, the awards were overseen by the government funded Carrick Institute for Learning and Teaching in Higher Education and known as the Carrick Awards for Australian University Teaching. The newly elected Rudd government reconfigured the process and established the Australian Learning and Teaching Council (ALTC) in 2008 to administer the awards under the AAUT nomenclature. In this edition of Re-Union, Deborah Henderson reflects on receiving an a 2010 ALTC Teaching Excellence Award in the category of Social Sciences (including Education).

Overview of methods used in cross-cultural comparisons of menopausal symptoms and their determinants : Guidelines for Strengthening the Reporting of Menopause and Aging (STROMA) studies

This paper reviews the methods used in cross-cultural studies of menopausal symptoms with the goal of formulating recommendations to facilitate comparisons of menopausal symptoms across cultures. It provides an overview of existing approaches and serves to introduce four separate reviews of vasomotor, psychological, somatic, and sexual symptoms at midlife. Building on an earlier review of cross-cultural studies of menopause covering time periods until 2004, these reviews are based on searches of Medline, PsycINFO, CINAHL and Google Scholar for English-language articles published from 2004 to 2010 using the terms “cross cultural comparison” and “menopause.” Two major criteria were used: a study had to include more than one culture, country, or ethnic group and to have asked about actual menopausal symptom experience. We found considerable variation across studies in age ranges, symptom lists, reference period for symptom recall, variables included in multivariate analyses, and the measurement of factors (e.g., menopausal status and hormonal factors, demographic, anthropometric, mental/physical health, and lifestyle measures) that influence vasomotor, psychological, somatic and sexual symptoms. Based on these reviews, we make recommendations for future research regarding age range, symptom lists, reference/recall periods, and measurement of menopausal status. Recommendations specific to the cross-cultural study of vasomotor, psychological, somatic, and sexual symptoms are found in the four reviews that follow this introduction.

Journeys with friends

Journeys with Friends Truna aka J. Turner, Giselle Rosman and Matt Ditton Panel Session description: We are no longer an industry (alone) we are a sector. Where the model once consisted of industry making games, we now see the rise of a cultural sector playing in the game space – industry, indies (for whatever that distinction implies) artists (another odd distinction), individuals and well … everyone and their mums. This evolution has an affect – on audiences and who they are, what they expect and want, and how they understand the purpose and language of these “digital game forms’; how we talk about our worlds and the kinds of issues that are raised; on what we create and how we create it and on our communities and who we are. This evolution has an affect on how these works are understood within the wider social context and how we present this understanding to the next generation of makers and players. We can see the potential of this evolution from industry to sector in the rise of the Australian indie. We can see the potential fractures created by this evolution in the new voices that ask questions about diversity and social justice. And yet, we still see a ‘solution’ type reaction to the current changing state of our sector which announces the monolithic, Fordist model as desirable (albeit in smaller form) – with the subsequent ramifications for ‘training’ and production of local talent. Experts talk about a mismatch of graduate skills and industry needs, insufficient linkages between industry and education providers and the need to explore opportunity for the now passing model in new spaces such as adver-games and serious games. Head counts of Australian industry don’t recognise trans media producers as being part of their purview or opportunity, they don’t count the rise of the cultural playful game inspired creative works as one of thier team. Such perspectives are indeed relevant to the Australian Games Industry, but what about the emerging Australian Games Sector? How do we enable a future in such a space? This emerging sector is perhaps best represented by Melbourne’s Freeplay audience: a heady mix of indie developers, players, artists, critical thinkers and industry. Such audiences are no longer content with an ‘industry’ alone; they are the community who already see themselves as an important, vibrant cultural sector. Part of the discussion presented here seeks to identify and understand the resources, primarily in the context of community and educational opportunities, available to the evolving sector now relying more on the creative processes. This creative process and community building is already visibly growing within the context of smaller development studios, often involving more multiskilling production methodologies where the definition of ‘game’ clearly evolves beyond the traditional one.

Dashboards adoption in the business controller’s decision making process

There has been discussion whether corporate decision-making can be helped by decision support systems regarding qualitative aspects of decision making (e.g. trouble shooting)(Löf and Möller, 2003). Intelligent decision support systems have been developed to help business controllers to perform their business analysis. However, few papers investigated the user’s point of view regarding such systems. How do decision-makers perceive the use of decision support systems, in general, and dashboards in particular? Are dashboards useful tools for business controllers? Based on the technology acceptance model and on the positive mood theory, we suggest a series of antecedent factors that influence the perceived usefulness and perceived ease of use of dashboards. A survey is used to collect data regarding the measurement constructs. The managerial implications of this paper consist in showing the degree of penetration of dashboards in the decision making in organizations and some of the factors that explain this respective penetration rate.

Fast and effective focused retrieval

Building an efficient and an effective search engine is a very challenging task. In this paper, we present the efficiency and effectiveness of our search engine at the INEX 2009 Efficiency and Ad Hoc Tracks. We have developed a simple and effective pruning method for fast query evaluation, and used a two-step process for Ad Hoc retrieval. The overall results from both tracks show that our search engine performs very competitively in terms of both efficiency and effectiveness.