A tsunami of unmet needs: Pancreatic and ampullary cancer patients’ supportive care needs and use of community and allied health services

Objective People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer. No previous research has documented the supportive care needs of this population. Our objective was to describe people’s needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection. Methods Queensland pancreatic or ampullary cancer patients (n=136, 54% of those eligible) completed a survey which assessed 34 needs across 5 domains (SCNS-SF34) and use of health services. Differences by resection were compared with Chi-squared tests. Results Overall, 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs whereas, health system/information (32%), patient care (21%) and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included ‘not being able to do things they used to do’ (41%), ‘concerns about the worries of those close’ (37%), and ‘uncertainty about the future’ (30%). Patients with non-resectable disease reported greater individual information needs but their needs were otherwise similar to patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18% and 15% consulted a dietician, complementary medicine practitioner or mental health practitioner, respectively. Palliative care access was greater (59% vs 27%) among those with non-resectable disease. Conclusion Very high levels of needs were reported by people with pancreatic or ampullary cancer. Future work needs to elucidate why uptake of appropriate supportive care is low and which services are required.

Local Commons: A visual approach to collective city making through situated community engagement

Due to the numerous possibilities of voicing concerns and the flood of data we are exposed to, local issues are sometimes at risk of being overlooked. This study explores Local Commons, a design intervention in public space that combines situated digital and tangible media in order to engage communities in contributing and debating different perspectives on a given local issue. The intervention invited the community to submit images of their perspectives on the issue, which were displayed on a public screen. Via tangible buttons in front of the screen, community members then agree or disagree on the displayed perspectives, creating a space for deliberation. In a user study, we were specifically interested in testing three aspects of our intervention, which are discussed in this paper: The difference that situatedness, visual content, and tangible interaction can make to urban community engagement.

Sense of community, social identity and social support among players of massively multiplayer online games (MMOGs): A qualitative analysis

The majority of research examining massively multiplayer online game (MMOG)-based social relationships has used quantitative methodologies. The present study used qualitative semi-structured interviews with 22 Australian World of Warcraft (WoW) players to examine their experiences of MMOG-based social relationships. Interview transcripts underwent thematic analysis and revealed that participants reported experiencing an MMOG-based sense of community (a sense of belonging within the gaming or WoW community), discussed a number of different MMOG-based social identities (such as gamer, WoW player and guild or group member) and stated that they derived social support (a perception that one is cared for and may access resources from others within a group) from their relationships with other players. The findings of this study confirm that MMOG players can form gaming communities. Almost all participants accessed or provided in-game social support, and some gave or received broader emotional support. Players also identified as gamers and guild members. Fewer participants identified as WoW players. Findings indicated that changes to the game environment influence these relationships and further exploration of players' experiences could determine the optimal game features to enhance positive connections with fellow players.

Design intersection: The growth of community-led technology enabled companies

The sharing economy or collaborative consumption based firms have the potential to disrupt long-standing traditional industries. However, little is known on the topic, specifically the role of design in these successful community-led, technology enable firms. It is the proposition of this research that the intrinsic innovation of collaborative consumption firms is not merely a technological one. With successful firms being identified by being able to marry both technological advancement and human insight on product meaning. Therefore, the authors suggest the use of design as an effective way to capitalise and build on product meaning, not only technological advancements in order to foster the growth of a community. To explore this further, the research team decided to investigate two fast growing examples of industry disrupting, sharing economy businesses; Airbnb and Uber. Of the two cases, the use of design was found to be more evident within, Airbnb, due to wide profession of using design techniques. Each case study has been mapped on Guenther’s (2012) framework of techno-economic innovation to help illustrate this marriage of innovation agendas. This paper explored the role of design in community-led companies by presenting an argument for why they have succeeded due to an understanding of human need and key market trends, instead of only technological innovation alone. Findings and implication of these case studies suggest the future role of design as a method to achieve this success. Built on the core tenants of design thinking, these techniques rationalise technology, human needs and business viability to product innovative solutions. Upon these findings, the research team has created a new framework for understanding community-led technology enabled companies, one that builds upon the work of Guenther’s (2012) model of enterprise design innovation. This paper is the first step in a new research agenda.

Customer-driven innovation: Digital channels and community

This study investigates the role of digital channels in community-led businesses by exploring two case study companies, Uber and Airbnb. At present, these community-led businesses are disrupting traditional industries by connecting with customers via digital channels and facilitating transactions between two parties. A deductive structured qualitative content analysis approach utilising a predetermined categorization matrix was implemented to decipher the digital channels used by both companies. The results discovered that both company’s digital channels push the customer to their core channel, allowing, customers to create their own physical, largely self-governed communities. However, little research exists which explores and analyses the role of digital channels in forming community-led businesses. Therefore, this paper aims to instigate future research and discussion in this emerging area by concluding with future research agendas.

Facebook: A basis for forming a peer learning community for nursing students in a bioscience unit

First year nursing students commonly find bioscience to be challenging. A Facebook community site was established to support and engage these students. The site was facilitated by virtual peer mentors and the unit coordinator. The high participation rate and the strong recommendation to future students indicated that the site successfully enabled student interaction and engagement with their learning. The students found it to be a readily accessible network and valued the useful resources and learning strategies provided by their peers. The sharing of both learning challenges and successful learning practices can help students build a sense of belonging and an understanding of academic practices and behaviours that can contribute to their learning success at university.

Translating Management Storylines: developing a visual strategy to communicate science to stakeholder community, a case for Mackay, QLD

This project developed a visual strategy and graphic outcomes to communicate the results of a scientific collaborative project to the Mackay community. During 2013 and 2014 a team from CSIRO engaged with the community in Mackay to collaboratively develop a set of strategies to improve the management of the Great Barrier Reef. The result of this work was a 300+ page scientific report that needed to be translated and summarised to the general community. The aim of this project was to strategically synthesise information contained in the report and to design and produce an outcome to be distributed to the participant community. By working with the CISRO researchers, an action toolkit was developed, with twelve cards and a booklet. Each card represented the story behind a certain local management issue and the actions that the participants suggested should be taken in order to improve management of The Reef. During the design synthesis it was identified that for all management issues there was a reference to the need to develop some sort of "educational campaign" to the area. That was then translated as an underlying action to support all other actions proposed in the toolkit.

Community engagement or community conversation?: Boomtown, a large-scale regional, outdoor community theatrical event

On the 18th of July 2013, three hundred local members of Gladstone, Queensland erupted into song and dance performing the fraught history of their community harbourside through tug boat ballets, taiko drumming, German bell ringing and BMX bike riding. Over 17,500 people attended the four performances of Boomtown, a Queensland Music Festival event. This was the largest regional, outdoor community-engaged musical performance staged in Australia. The narrative moved beyond the dominant, pejorative view of Gladstone as an industrial town to include the community members’ sense of purpose and aspirations. It was a celebratory, contentious and ambitious project that sought to disrupt the traditional conventions of performance-making through working in artistically democratic ways. This article explores the potential for Australian Community Engaged Arts (CEA) projects such as Boomtown to democratically engage community members and co-create culturally meaningful work within a community. Research into CEA projects rarely consider how the often delicate conversations between practitioners and the community work. The complex processes of finding and co-writing the narrative, casting, and rehearsing Boomtown are discussed with reference to artistic director/dramaturge Sean Mee’s innovative approaches. Boomtown began with and concluded with community conversations. Skilful negotiation ensured congruence between the townspeople’s stories and the “community story” presented on stage, abrogating potential problems of narrative ownership. To supplement the research, twenty-one personal interviews were undertaken with Gladstone community members invested in the production before, during and after the project: performers, audience members and local professionals. The stories shared and emphasised in the theatricalised story were based on propitious, meaningful, local stories from lived experiences rather than preconceived, trivial or tokenistic matters, and were underpinned by a consensus formed on what was in the best interests of the majority of community members. Boomtown exposed hidden issues in the community and gave voice to thoughts, feelings and concerns which triggered not just engagement, but honest conversation within the community.

Community uses of co-creative media. Digital storytelling and Co-creative Media : The role of community arts and media in propagating and coordinating population-wide creative practice

This report describes a dynamic ‘Co-creative Media System’ that is emerging in the social space bounded by the following institutional pillars: • major cultural institutions (including screen culture agencies, libraries, museums, galleries and public service broadcasters) • the Community Arts and Cultural Development sector (historically supported through various programs of the Australia Council for the Arts) • the community broadcasting sector • the Indigenous media sector, and • the higher education sector. It illustrates how this system activates the immense creative potential of the Australian population through the ongoing development and application of participatory storytelling methods and media.

EVpedia: A community web portal for extracellular vesicles research

Motivation Extracellular vesicles (EVs) are spherical bilayered proteolipids, harboring various bioactive molecules. Due to the complexity of the vesicular nomenclatures and components, online searches for EV-related publications and vesicular components are currently challenging. Results We present an improved version of EVpedia, a public database for EVs research. This community web portal contains a database of publications and vesicular components, identification of orthologous vesicular components, bioinformatic tools and a personalized function. EVpedia includes 6879 publications, 172 080 vesicular components from 263 high-throughput datasets, and has been accessed more than 65 000 times from more than 750 cities. In addition, about 350 members from 73 international research groups have participated in developing EVpedia. This free web-based database might serve as a useful resource to stimulate the emerging field of EV research. Availability and implementation The web site was implemented in PHP, Java, MySQL and Apache, and is freely available at http://evpedia.info.

What is the available evidence concerning relative performance of different designs of mixed-species plantings for smallholder and community forestry in the tropics? A systematic map protocol

Background There has been growing interest in mixed species plantation systems because of their potential to provide a range of socio-economic and bio-physical benefits which can be matched to the diverse needs of smallholders and communities. Potential benefits include the production of a range of forest products for home and commercial use; improved soil fertility especially when nitrogen fixing species are included; improved survival rates and greater productivity of species; a reduction in the amount of damage from pests or disease; and improved biodiversity and wildlife habitats. Despite these documented services and growing interest in mixed species plantation systems, the actual planting areas in the tropics are low, and monocultures are still preferred for industrial plantings and many reforestation programs because of perceived higher economic returns and readily available information about the species and their silviculture. In contrast, there are few guidelines for the design and management of mixed-species systems, including the social and ecological factors of successful mixed species plantings. Methods This protocol explains the methodology used to investigate the following question: What is the available evidence for the relative performance of different designs of mixed-species plantings for smallholder and community forestry in the tropics? This study will systematically search, identify and describe studies related to mixed species plantings across tropical and temperate zones to identify the social and ecological factors that affect polyculture systems. The objectives of this study are first to identify the evidence of biophysical or socio-economic factors that have been considered when designing mixed species systems for community and smallholder forestry in the tropics; and second, to identify gaps in research of mixed species plantations. Results of the study will help create guidelines that can assist practitioners, scientists and farmers to better design mixed species plantation systems for smallholders in the tropics.

Virtual community, purchasing behaviour, and emotional well-being

The benefits of virtual communities in increasing firms' profits, instilling knowledge in consumers, and enhancing consumers' social experience and enjoyment are widely recognised. However, relatively little is known about how the use of a virtual community could influence consumers' emotional well-being. This study examines the relationships among virtual community features (structural and experiential routes) as antecedents of virtual community engagement, including quality of use of virtual communities (time spent online and level of information exchange), electronic word-of-mouth (eWOM) purchasing behaviour, and consumers' emotional experience. Furthermore, by extending the cultural perspective to virtual community engagement, this study examines the role of collectivistic values on the aforementioned relationships. The proposed hypotheses are tested on the basis of data collected from 286 members of different virtual communities in Taiwan. The results partially support the theory that features of virtual communities influenced the quality of use, which then has a subsequent effect on consumer eWOM purchasing and emotional well-being. The results of the empirical analysis add credence to the proposed relationships. The role of collectivistic values is also partially supported. A detailed discussion of the findings and limitations of this study is provided.

Mobilising School and Community Engagement to Implement Disability-Inclusive Education through Action Research: Fiji, Samoa, Solomon Islands and Vanuatu

This publication emanates from the four-country research project entitled “Strengthening capacity for disability-inclusive education development policy formulation, implementation and monitoring in the South Pacific region” funded by the Australian Development Research Award Scheme (ADRAS) and conducted jointly by the academic staff from the Queensland University of Technology and the University of the South Pacific.

Latinos and political advocacy for cancer control in a United States-Mexico border community

Health policy interventions provide powerful tools for addressing health disparities. The Latino community is one of the fastest growing communities in the United States yet is largely underrepresented in government and advocacy efforts. This study includes 42 Latino adults (M age 5 45 years) who participated in focus group discussions and completed a brief questionnaire assessing their experiences with political health advocacy. Qualitative analyses revealed participants considered cancer a concern for the Latino community, but there was a lack of familiarity with political advocacy and its role in cancer control. Participants identified structural, practical, cultural, and contextual barriers to engaging in political health advocacy. This article presents a summary of the findings that suggest alternative ways to engage Latinos in cancer control advocacy.

The reach and rationale for community health fairs

Latinos living in the USA account for one third of the uninsured population and face numerous cultural, linguistic, and financial barriers to accessing healthcare services. Community health fairs have developed to address the unmet need for no- and low-cost services that target prevention and education among underserved communities. The current research describes an ongoing effort in a community in Southern California and examines the barriers to health care among participants registering to receive free breast health screenings, one of the major services offered at a 2010 health fair. A total of 186 adult Latina women completed a brief questionnaire assessing their healthcare utilization and self-reported barriers to engaging in preventive and screening services. Approximately two thirds of the participants reported never receiving or having more than 2 years passing since receiving a preventive health check-up. Participants identified cost (64.5 %) and knowledge of locations for services (52.3 %) as the primary barriers to engaging in routine healthcare services. Engaging with health professionals represents a leading way in which adults obtain health information; health fairs offering cancer health screenings represent a culturally appropriate venue for increased cancer health equity. Implications of the current research for future health fairs and their role in community cancer education are discussed.