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.

Developing a curriculum for the real world : a whole of institution approach

Keynote address at University of Surrey, Real World Education Symposium, 29 September 2010. Full-text in audio form only. Link to audio provided in Official URL field.

The visual arts: ways of seeing

In this chapter, Felicity McArdle provides a framework for planning,implementing and assessing quality experiences in the visual arts. She describes the importance of embedding Indigenous perspectives and knowledge in the curriculum and how to a build a repertoire of resources and practical ideas to assist children to become eff ective communicators through the use of symbol systems for meaning-making.

Re-conceptualising and re-positioning Australian library and information science education for the 21st century [Final Report 2011]

How can Australian library and information science (LIS) education produce, in a sustainable manner, the diverse supply of graduates with the appropriate attributes to develop and maintain high quality professional practice in the rapidly changing 21st century? This report presents the key findings of a project that has examined this question through research into future directions for LIS education in Australia. Titled Re-conceptualising and re-positioning Australian library and information science education for the twenty-first century, the purpose of the project was to establish a consolidated and holistic picture of the Australian LIS profession, and identify how its future education and training can be mediated in a cohesive and sustainable manner. The project was undertaken with a team of 12 university and vocational LIS educators from 11 institutions around Australia between November 2009 and December 2010. Collectively, these eleven institutions represented the broad spectrum and diversity of LIS education in Australia, and enabled the project to examine education for the information profession in a holistic and synergistic manner. Participating institutions in the project included Queensland University of Technology (Project Leader), Charles Sturt University, Curtin University of Technology, Edith Cowan University, Monash University, RMIT University, University of Canberra, University of South Australia, University of Tasmania, University of Technology Sydney and Victoria University. The inception and need for the project was motivated by a range of factors. From a broad perspective several of these factors relate to concerns raised at national and international levels regarding problems with education for LIS. In addition, the motivation and need for the project also related to some unique challenges that LIS education faces in the Australian tertiary education landscape. Over recent years a range of responses to explore the various issues confronting LIS education in Australia have emerged at local and national levels however this project represented the first significant investment of funding for national research in this area. In this way, the inception of the project offered a unique opportunity and powerful mechanism through which to bring together key stakeholders and inspire discourse concerning future education for the profession. Therefore as the first national project of its kind, its intent has been to provide foundation research that will inform and guide future directions for LIS education and training in Australia. The primary objective of the project was to develop a Framework for the Education of the Information Professions in Australia. The purpose of this framework was to provide evidence based strategic recommendations that would guide Australia’s future education for the information professions. Recognising the three major and equal players in the education process the project was framed around three areas of consideration: LIS students, the LIS workforce and LIS educators. Each area of consideration aligned to a research substudy in the project. The three research substudies were titled Student Considerations, Workforce Planning Considerations and Tertiary Education Considerations. The Students substudy provided a profile of LIS students and an analysis of their choices, experiences and expectations in regard to LIS education and their graduate destinations. The Workforce substudy provided an overview and analysis of the nature of the current LIS workforce, including a focus on employer expectations and employment opportunities and comment on the core and elective skill, knowledge and attitudes of current and future LIS professionals. Finally the Tertiary Education substudy provided a profile of LIS educators and an analysis of their characteristics and experiences including the key issues and challenges. In addition it also explored current national and international trends and priorities impacting on LIS education. The project utilised a Community Based Participatory Research (CBPR) approach. This approach involves all members of the community in all aspects of the project. It recognised the unique strengths and perspectives that community members bring to the process. For this project ‘community’ comprised of all individuals who have a role in, or a vested interest in, LIS education and included LIS educators, professionals, employers, students and professional associations. Individuals from these sub-groups were invited to participate in a range of aspects of the project from design through to implementation and evaluation. A range of research methodologies were used to consider the many different perspectives of LIS education, including employers and recruiters, professional associations, students, graduates and LIS teaching staff. Data collection involved a mixed method approach of questionnaires, focus groups, semi-structured interviews and environmental scans. An array of approaches was selected to ensure that broadest possible access to different facets of the information profession would be achieved. The main findings and observations from each substudy have highlighted a range of challenges for LIS education that need to be addressed. These findings and observations have grounded the development of the Framework for the Education of the Information Professions in Australia. The framework presents eleven recommendations to progress the national approach to LIS education and guide Australia’s future education for the information professions. The framework will be used by the LIS profession, most notably its educators, as strategic directions for the future of LIS education in Australia. Framework for the Education of the Information Professions in Australia: Recommendation 1: It is recommended that a broader and more inclusive vocabulary be adopted that both recognises and celebrates the expanding landscape of the field, for example ‘information profession’, ‘information sector’, ‘information discipline’ and ‘information education’. Recommendation 2: It is recommended that a self-directed body composed of information educators be established to promote, support and lead excellence in teaching and research within the information discipline. Recommendation 3: It is recommended that Australia’s information discipline continue to develop excellence in information research that will raise the discipline’s profile and contribute to its prominence within the national and international arena. Recommendation 4: It is recommended that further research examining the nature and context of Australia’s information education programs be undertaken to ensure a sustainable and relevant future for the discipline. Recommendation 5: It is recommended that further research examining the pathways and qualifications available for entry into the Australian information sector be undertaken to ensure relevance, attractiveness, accessibility and transparency. Recommendation 6: It is recommended that strategies are developed and implemented to ensure the sustainability of the workforce of information educators. Recommendation 7: It is recommended that a national approach to promoting and marketing the information profession and thereby attracting more students to the field is developed. Recommendation 8: It is recommended that Australia’s information discipline continues to support a culture of quality teaching and learning, especially given the need to accommodate a focus on the broader information landscape and more flexible delivery options. Recommendation 9: It is recommended that strategies are developed that will support and encourage collaboration between information education within the higher education and VET sectors. Recommendation 10: It is recommended that strategies and forums are developed that will support the information sector working together to conceptualise and articulate their professional identity and educational needs. Recommendation 11: It is recommended that a research agenda be established that will identify and prioritise areas in which further development or work is needed to continue advancing information education in Australia. The key findings from this project confirm that a number of pressing issues are confronting LIS education in Australia. Left unaddressed these issues will have significant implications for the future of LIS education as well as the broader LIS profession. Consequently creating a sustainable and cohesive future can only be realised through cooperation and collaboration among all stakeholders including those with the capacity to enact radical change in university and vocational institutions. Indeed the impending adoption and implementation of the project’s recommendations will fundamentally determine whether Australian LIS education is assured both for the present day and into the future.

What happened to the education revolution? : new media technologies and the Australian curriculum : constraints and possibilities

This chapter investigates the place of new media in Queensland in the light of the Australian curriculum. ‘Multimodal texts’ in English are being defined as largely electronically ‘created’ and yet restricted access to digital resources at the chalkface may preclude this work from happening. The myth of the ‘digital native’ (Prensky, 2007), combined with the reality of the ‘digital divide’ coupled with technophobia amongst some quite experienced teachers, responsible for implementing the curriculum, paints a picture of constraints. These constraints are due in part to protective state bans in Queensland on social networking sites and school bans on mobile phone use. Some ‘Generation next’ will have access to digital platforms for the purpose of designing texts at home and school, and others will not. Yet without adequate Professional Development for teachers and substantially increased ICT infrastructure funding for all schools, the way new media and multimodal opportunities are interpreted at state level in the curriculum may leave much to be desired in schools. This chapter draws on research that I recently conducted on the professional development needs of beginning teachers, as well as a critical reading of the ACARA policy documents.