Acceptability of the distress thermometer and problem list to community-based telephone cancer helpline operators, and to cancer patients and carers

Background Cancer can be a distressing experience for cancer patients and carers, impacting on psychological, social, physical and spiritual functioning. However, health professionals often fail to detect distress in their patients due to time constraints and a lack of experience. Also, with the focus on the patient, carer needs are often overlooked. This study investigated the acceptability of brief distress screening with the Distress Thermometer (DT) and Problem List (PL) to operators of a community-based telephone helpline, as well as to cancer patients and carers calling the service. Methods Operators (n = 18) monitored usage of the DT and PL with callers (cancer patients/carers, >18 years, and English-speaking) from September-December 2006 (n = 666). The DT is a single item, 11-point scale to rate level of distress. The associated PL identifies the cause of distress. Results The DT and PL were used on 90% of eligible callers, most providing valid responses. Benefits included having an objective, structured and consistent means for distress screening and triage to supportive care services. Reported challenges included apparent inappropriateness of the tools due to the nature of the call or level of caller distress, the DT numeric scale, and the level of operator training. Conclusions We observed positive outcomes to using the DT and PL, although operators reported some challenges. Overcoming these challenges may improve distress screening particularly by less experienced clinicians, and further development of the PL items and DT scale may assist with administration. The DT and PL allow clinicians to direct/prioritise interventions or referrals, although ongoing training and support is critical in distress screening.

School-community engagement : a critical approach to involving young people in an urban planning project

This study examines the participation of a group of high school students in designing a Heritage Journey as part of an urban redevelopment project in their community. School-community engagement offers young people an opportunity to engage in community life and influence decisions that affect them. Forging links between community and school is becoming more important for teachers as they attempt to create new authentic learning opportunities for young people within a changing world. Increasingly, researchers and urban planners are including children and young people as active decision makers and participants in community engagement projects. However, models of participation tend to be adult-focussed, conceive participation in terms of low to high graduated levels and lack a clearly articulated theoretical basis. The research problem in this study focuses on investigating whether the inclusion of young people in school-community engagement results in value adding to urban planning and is an example of genuine participation. The aim of the study is to provide a theoretically informed, empirically rich understanding of the inclusion of young people in a community engagement strategy for an urban planning project. Theories of space developed by Henri Lefebvre and Edward Soja are drawn upon for understanding how space is understood, used, and redeveloped by the students and other stakeholders. The study also draws on David Harvey’s notion of utopia and space to consider the imaginative possibilities of the students’ designs and ideas. The study uses a participatory research approach and documents the opportunities and challenges of this methodology. The thesis argues that school-community engagement within a "Thirdspace" offers many new opportunities for the emergence of authentic learning situations. Key findings from the study show young people’s participation in an urban planning project can achieve successful results when young people are given opportunities for full participation in decision-making processes; multiple pathways for active engagement are incorporated into the research design; opportunities for mentoring are provided; realistic timelines are communicated to all stakeholders and the needs and social practices of the local community are acknowledged. A new spatial model of community engagement is proposed as an outcome of the study. Unlike previous models of participation, this model demonstrates how exclusion and inclusion can be conceived visually, and may prove effective for conceptualising future community engagement projects that involve young people.

Towards local cultures of sustainability : facilitating community created environment education centres through design

Ecological sustainability has been proposed to address the problem of human impacts increasingly degrading planetary resources and ecosystems, threatening biodiversity, eco-services and human survival. Ecological sustainability is an imperative, with Australia having one of the highest eco-footprints per person worldwide. While significant progress has been made via implementation of ecologically sustainable design in urban communities, relatively little has been undertaken in small, disparate regional communities in Australia. Regional communities are disadvantaged by rural economic decline associated with structural change and inequities of resource transfer. The ecologically sustainable solution is holistic, so all settlements need to be globally wise, richly biodiverse yet locally specific. As a regional solution to this global problem, this research offers the practical means by which a small regional community can contribute. It focuses on the design and implementation of a community centre and the fostering of transformative community learning through an integrated ‘learning community’ awareness of ecologically sustainable best practice. Lessons learned are documented by the participant researcher who as a designer, facilitator, local resident and social narrator has been deeply connected with the Tweed-Caldera region over a period since 1980. The collective action of the local community of Chillingham has been diligently recorded over a decade of design and development. Over this period, several positive elements emerged in terms of improvements to the natural and built environment, greater social cohesion and co-operative learning along with a shift towards a greener local economy. Behavioural changes in the community were noted as residents strived to embrace ecological ideals and reduce fossil fuel dependency. They found attractive local solutions to sourcing of food and using local employment opportunities to up skill their residents via transformative learning as a community in transition. Finally, the catalytic impact of external partnering has also been documented. How well the region as a whole has achieved its ecologically sustainable objectives is measured in terms of the delivered success of private and public partnering with the community, the creation of a community centre cum environment education centre, the restoration of local heritage buildings, the repair of riparian forests and improved water conditions in local river systems, better roads and road safety, local skills and knowledge transfer, support of local food and local/regional growers markets to attract tourists via the integrated trails network. In aggregate, each and every element contributes to a measure of eco-positive development for the built environment, its social organisation and its economy that has guided the local community to find its own pathway to sustainability. Within the Tweed-Caldera bioregion in northern New South Wales, there has been a lack of strategic planning, ecologically sustainable knowledge and facilities in isolated communities that could support the development of a local sustained green economy, provide a hub for socio-cultural activities and ecology based education. The first challenge in this research was to model a whole systems approach to eco-positive development in Chillingham, NSW, a small community where Nature and humanity know no specific boundary. The net result was the creation of a community environment education centre featuring best-affordable ecological practice and regionally distinctive, educational building form from a disused heritage building (cow bale). This development, implemented over a decade, resonated with the later regional wide programs that were linked in the Caldera region by the common purpose of extending the reach of local and state government assistance to regional NSW in economic transition coupled with sustainability. The lessons learned from these linked projects reveal that subsequent programs have been significantly easier to initiate, manage, develop and deliver results. In particular, pursuing collaborative networks with all levels of government and external private partners has been economically effective. Each community’s uniqueness has been celebrated and through drawing out these distinctions, has highlighted local vision, strategic planning, sense of belonging and connection of people with place. This step has significantly reduced the level of friction between communities that comes from natural competition for the finite pool of funds. Following the pilot Tweed-Caldera study, several other NSW regional communities are now undertaking a Community Economic Transition Program based on the processes, trials and positive experiences witnessed in the Tweed-Caldera region where it has been demonstrated that regional community transition programs can provide an opportunity to plan and implement effective long term strategies for sustainability, empowering communities to participate in eco-governance. This thesis includes the design and development of a framework for community created environment education centres to provide an equal access place for community to participate to meet their essential needs locally. An environment centre that facilitates community transition based on easily accessible environmental education, skills and infrastructure is necessary to develop local cultures of sustainability. This research draws upon the literatures of ecologically sustainable development, environmental education and community development in the context of regional community transition towards ‘strong sustainability’. The research approach adapted is best described as a four stage collaborative action research cycle where the participant researcher (me) has a significant involvement in the process to foster local cultures of sustainability by empowering its citizens to act locally and in doing so, become more self reliant and socially resilient. This research also draws upon the many fine working exemplars, such as the resilience of the Cuban people, the transition town initiative in Totnes, U.K. and the models of Australian Community Gardens, such as CERES (Melbourne) and Northey Street (Brisbane). The objectives of this study are to research and evaluate exemplars of ecologically sustainable environment education centres, to facilitate the design and development of an environment education centre created by a small regional community as an ecologically sustainable learning environment; to facilitate a framework for community transition based on environmental education, skills and infrastructure necessary to develop local cultures of sustainability. The research was undertaken as action research in the Tweed Caldera in Northern NSW. This involved the author as participant researcher, designer and volunteer in two interconnected initiatives: the Chillingham Community Centre development and the Caldera Economic Transition Program (CETP). Both initiatives involved a series of design-led participatory community workshops that were externally facilitated with the support of government agency partnerships, steering committees and local volunteers. Together the Caldera research programs involved communities participating in developing their own strategic planning process and outcomes. The Chillingham Community Centre was developed as a sustainable community centre/hub using a participatory design process. The Caldera Economic Transition Program (CETP) prioritised Caldera region projects: the Caldera farmer’s market; community gardens and community kitchens; community renewable energy systems and an integrated trails network. The significant findings were: the CETP projects were capable of moving towards an eco-positive design benchmark through transformative learning. Community transition to sustainability programs need to be underpinned by sustainability and environmental education based frameworks and practical on ground experience in local needs based projects through transformative learning. The actioned projects were successfully undertaken through community participation and teamwork. Ecological footprint surveys were undertaken to guide and assess the ongoing community transition process, however the paucity of responses needs to be revisited. The concept of ecologically sustainable development has been adopted internationally, however existing design and planning strategies do not assure future generations continued access to healthy natural life support systems. Sustainable design research has usually been urban focussed, with little attention paid to regional communities. This study seeks to redress this paucity through the design of ecologically sustainable (deep green) learning environments for small regional communities. Through a design-led process of environmental education, this study investigates how regional communities can be facilitated to model the principles of eco-positive development to support transition to local cultures of sustainability. This research shows how community transition processes and projects can incorporate sustainable community development as transformative learning through design. Regional community transition programs can provide an opportunity to plan long term strategies for sustainability, empowering people to participate in eco-governance. A framework is developed for a community created environment education centre to provide an equal access place for the local community to participate in implementing ways to meet their essential needs locally. A community environment education centre that facilitates community transition based on holistic environmental education, skills and infrastructure is necessary to develop local cultures of sustainability.

Behavioural changes add validity to the construct of posttraumatic growth

The research aimed to identify positive behavioural changes that people may make as a result of negotiating the aftermath of a traumatic experience, thereby extending the current cognitive model of posttraumatic growth (PTG). It was hypothesised that significant others would corroborate survivor’s cognitive and behavioural reports of PTG. The sample comprised 176 participants; 88 trauma survivors and 88 significant others. University students accounted for 64% of the sample and 36% were from the broader community. Approximately one third were male. All participants completed the Posttraumatic Growth Inventory [PTGI] and open ended questions regarding behavioural changes. PTGI scores in the survivor sample were corroborated by the significant others with only the Appreciation of Life factor of the PTGI differing between the two groups (e.g., total PTGI scores between groups explained 33.64% of variance). Nearly all of the survivors also reported positive changes in their behaviour and these changes were also corroborated by the significant others. Results provide validation of the posttraumatic growth construct and the PTGI as an instrument of measurement. Findings may also influence therapeutic practice for example, the potential usefulness of corroborating others.

The Industry Commission inquiry into charitable organisations : the draft report implications for the future of community services

In December 1993, the Commonwealth Assistant Treasurer., Mr George Gear announced an Inquiry into Charitable Organisations in Australia. The inquiry would be undertaken by the Industry Commission, the structure charged by the Commonwealth to oversight its micro-economic reform agenda. The inquiry had been on the Industry Commission's forward workplan since 1992. In July 1993 a draft terms of reference was prepared for comment by the State Premiers...

A taxing definition — a comment on the industry commission's draft proposals for defining community social welfare organisations

The draft report of the Industry Commission's charitable organisations inquiry introduces a new term for nonprofit organisations delivering human services. The new term is "community social welfare organisation" or "CSWO". The report recommends that tax deductibility of donations be extended such organisations. It then hints at making the definition of CSWO a standard criteria for state taxation exemptions. This paper examines the definition of the new term community social welfare organisation and charts its possible consequences if adopted by the federal government. The promise of tax deductibility status to previously shunned organisations is largely illusory. The Commission's aim of simplification through clarification of the definition is flawed and will not reduce the administration costs for the Australian Tax Office (ATO) or organisations.

Health matters for subscribers to community-supported agriculture

There are a variety of reasons and motivations for people to subscribe to community-supported agriculture (CSA) schemes, many of which include social, ethical, environmental, and economical benefits. The global rise of food allergies and food related health issues in recent years has led to a growing number of initiatives particularly in developing countries to raise more awareness of the current situation amongst individuals, organisations, and government bodies, and to plan for its implications for the existing food and health systems. Based on a mixed method research conducted in Australia, this paper argues that personal health matters are one of the key motivators for consumers to seek out alternative food systems, particularly CSA initiatives. In addition, it presents the willingness for consumers to seek out information about the food they consume and proposes that technology plays a key role in being used as a conduit to share and investigate information relating to alternative food systems. Further research is required to determine the variety of benefits and opportunities alternative food systems can provide consumers with food related health issues.

Queer community archives in California since 1950

Purpose: This study provides insight into the histories and current statuses of queer community archives in California and explores what the archives profession can learn from the queer community archives and archivists. Through the construction of histories of three community archives (GLBT Historical Society; Lavender Library, Archives, and Cultural Exchange of Sacramento, Inc.; and ONE National Gay & Lesbian Archives), the study discovered why these independent, community-based archives were created, the issues that influenced their evolution, and the similarities and differences among them. Additionally, it compared the community archives to institutional archives which collect queer materials to explore the similarities and differences among the archives and determine possible implications for the archives profession. Significance: The study contributes to the literature in several significant ways: it is the first in-depth comparative history of the queer community archives; it adds to the cross-disciplinary research in archives and history; it contributes to the current debates on the nature of the archives and the role of the professional archivist; and it has implications for changing archival practice. Methodology: This study used social constructionism for epistemological positioning and new social history theory for theoretical framework. Information was gathered through seven oral history interviews with community archivists and volunteers and from materials in the archives’ collections. This evidence was used to construct the histories of the archives and determine their current statuses. The institutional archives used in the comparisons are the: University of California, Berkeley’s Bancroft Library; University of California, Santa Cruz’s Special Collections and University Archives; and San Francisco Public Library’s James C. Hormel Gay and Lesbian Center. The collection policies, finding aids, and archival collections related to the queer communities at the institutional and community archives were compared to determine commonalities and differences among the archives. Findings: The findings revealed striking similarities in the histories of the community archives and important implications for the archives’ survival and their relevancy to the archives profession. Each archives was started by an individual or small group collecting materials to preserve history that would otherwise have been lost as institutional archives were not collecting queer materials. These private collections grew and became the basis for the community archives. The community archives differ in their staffing models, circulation policies, and descriptive practices. The community archives have grown to incorporate more public programming functions than most institutional archives. While in the past, the community archives had little connection to institutional archives, today they have varying degrees of partnerships. However, the historical lack of collecting queer materials by institutional archives makes some members of the communities reluctant to donate materials to institutional archives or collaborate with them. All three queer community archives are currently managed by professionally trained and educated archivists and face financial issues impacting their continued survival. The similarities and differences between the community and institutional archives include differences in collection policies, language differences in the finding aids, and differing levels of relationships between the archives. However, they share similar sensitivity in the use of language in describing the queer communities and overlap in the types of materials collected. Implications: This study supports previous research on community archives showing that communities take the preservation of history into their own hands when ignored by mainstream archives (Flinn, 2007; Flinn & Stevens, 2009; Nestle, 1990). Based on the study’s findings, institutional archivists could learn from their community archivist counterparts better ways to become involved in and relevant to the communities whose records they possess. This study also expands the understanding of history of the queer communities to include in-depth research into the archives which preserve and make available material for constructing history. Furthermore, this study supports reflective practice for archivists, especially in terms of descriptions used in finding aids. It also supports changes in graduate education for archives students to enable archivists in the United States to be more fully cognizant of community archives and able to engage in collaborative, international projects. Through this more activist role of the archivists, partnerships between the community and institutional archives would be built to establish more collaborative, respectful relationships with the communities in this post-custodial age of the archives (Stevens, Flinn, & Shepherd, 2010). Including community archives in discussions of archival practice and theory is one way of ensuring archives represent and serve a diversity of voices.

Domestic energy monitoring in Victorian households with PV solar installations : feasibility report for GV Community Energy

Australia requires decisive action on climate change and issues of sustainability. The Urban Informatics Research Lab has been funded by the Queensland State Government to conduct a three year study (2009 – 2011) exploring ways to support Queensland residents in making more sustainable consumer and lifestyle choices. We conduct user-centred design research that inform the development of real-time, mobile, locational, networked information interfaces, feedback mechanisms and persuasive and motivational approaches that in turn assist in-situ decision making and environmental awareness in everyday settings. The study aims to deliver usable and useful prototypes offering individual and collective visualisations of ecological impact and opportunities for engagement and collaboration in order to foster a participatory and sustainable culture of life in Australia. Raising people’s awareness with environmental data and educational information does not necessarily trigger sufficient motivation to change their habits towards a more environmentally friendly and sustainable lifestyle. Our research seeks to develop a better understanding how to go beyond just informing and into motivating and encouraging action and change. Drawing on participatory culture, ubiquitous computing, and real-time information, the study delivers research that leads to viable new design approaches and information interfaces which will strengthen Australia’s position to meet the targets of the Clean Energy Future strategy, and contribute to the sustainability of a low-carbon future in Australia. As part of this program of research, the Urban Informatics Research Lab has been invited to partner with GV Community Energy Pty Ltd on a project funded by the Victorian Government Sustainability Fund. This feasibility report specifically looks at the challenges and opportunities of energy monitoring in households in Victoria that include a PV solar installation. The report is structured into two parts: In Part 1, we first review a range of energy monitoring solutions, both stand-alone and internet-enabled. This section primarily focusses on the technical capacilities. However, in order to understand this information and make an informed decision, it is crucial to understand the basic principles and limitations of energy monitoring as well as the opportunities and challenges of a networked approach towards energy monitoring which are discussed in Section 2.

The identification of therapeutic targets in metastatic melanoma

Metastatic melanoma, a cancer historically refractory to chemotherapeutic strategies, has a poor prognosis and accounts for the majority of skin cancer related mortality. Although the recent approval of two new drugs combating this disease, Ipilimumab and Vemurafenib (PLX4032), has demonstrated for the first time in decades an improvement in overall survival; the clinical efficacy of these drugs has been marred by severe adverse immune reactions and acquired drug resistance in patients, respectively. Thus, understanding the etiology of metastatic melanoma will contribute to the improvement of current therapeutic strategies while leading to the development of novel drug approaches. In order to identify recurrently mutated genes of therapeutic relevance in metastatic melanoma, a panel of stage III local lymph node melanomas were extensively characterised using high-throughput genomic technologies. This led to the identification of mutations in TFG in 5% of melanomas from a candidate gene sequencing approach using SNP array analysis, 24% of melanomas with mutations in MAP3K5 or MAP3K9 though unbiased whole-exome sequencing strategies, and inactivating mutations in NF1 in BRAF/NRAS wild type tumours though pathway analysis. Lastly, this thesis describes the development of a melanoma specific mutation panel that can rapidly identify clinically relevant mutation profiles that could guide effective treatment strategies through a personalised therapeutic approach. These findings are discussed in respect to a number of important issues raised by this study including the current limitation of next-generation sequencing technology, the difficulty in identifying ‘driver’ mutations critical to the development of melanoma due to high carcinogenic exposure by UV radiation, and the ultimate application of mutation screening in a personalised therapeutic setting. In summary, a number novel genes involved in metastatic melanoma have been identified that may have relevance for current therapeutic strategies in treating this disease.