Development of a condition-specific measure of quality of life for children with cerebral palsy: empirical thematic data reported by parents and children

Background: Although there is increasing recognition that quality of life (QOL) and health-related quality of life (HRQOL) are important outcome variables in clinical trials for children with cerebral palsy, there are substantial limitations in existing measures of QOL. This study identify themes of QOL for children with cerebral palsy and their parents to guide the development of a new condition-specific QOL scale. Methods: A qualitative study of parent and child views on QOL composition was conducted, using a grounded theory framework. Families participated in semistructured interviews on QOL until thematic saturation was reached (n = 28 families). Results: Overall, 13 themes emerged from the interviews: physical health, body pain and discomfort, daily living tasks, participation in regular physical and social activities, emotional well-being and self-esteem, interaction with the community, communication, family health, supportive physical environment, future QOL, provision of, and access to services, financial stability, and social well-being. Conclusions: Research with parents and children with cerebral palsy, representative of severity across the disease spectrum and socio-economic status, reinforced and expanded on the traditional themes that have underpinned QOL measurement development. This has implications not only for the development of a new QOL scale for children with cerebral palsy, but also for clinical interventions and community care management.

Communication pathways in community aged care: an Australian study

Background:
Health and social care practitioners collaborate in discharge planning for older people. Difficulties securing timely and quality discharge information and unclear role boundaries can be challenging. There are limited reports in the literature describing community-based practitioners' roles communicating client information.

Aim:
To describe the roles of community-based practitioners in communication of older clients' information in an Australian context.

Design:
A descriptive and exploratory qualitative research design was applied.

Methods:
Four focus groups were conducted in 2009 with a small sample (n = 16) of district nurses, practice nurses and aged care case managers.

Results:
All participants described communication as a core characteristic of their role focused on minimising risks for older people. Participants valued dialogue with other health and social care providers in real time with an emphasis on telephone communication, face-to-face meetings, and case conferences. Telephone communication was considered important where there was an urgent need to problem solve. Written communication was noted as less effective.

Conclusions:
There is an increasing need for stronger models of communication in community-based settings to facilitate safe, efficient and sustainable health and social outcomes for older people.

Implications for practice:
There is limited available research with this focus to guide practice. Findings from this exploratory study indicate a number of important areas for further research: (i) to understand how communication feedback systems and pathways between community and inpatient providers could improve information exchange and (ii) to describe community nurses' roles in communication and medication risks for older people.

Space-crossing : community-based data forwarding in mobile social networks under the hybrid communication architecture

In this paper, we study two tightly coupled issues, space-crossing community detection and its influence on data forwarding in mobile social networks (MSNs). We propose a communication framework containing the hybrid underlying network with access point (AP) support for data forwarding and the base stations for managing most of control traffic. The concept of physical proximity community can be extended to be one across the geographical space, because APs can facilitate the communication among long-distance nodes. Space-crossing communities are obtained by merging some pairs of physical proximity communities. Based on the space-crossing community, we define two cases of node local activity and use them as the input of inner product similarity measurement. We design a novel data forwarding algorithm Social Attraction and Infrastructure Support (SAIS), which applies similarity attraction to route to neighbor more similar to destination, and infrastructure support phase to route the message to other APs within common connected components. We evaluate our SAIS algorithm on real-life datasets from MIT Reality Mining and University of Illinois Movement (UIM). Results show that space-crossing community plays a positive role in data forwarding in MSNs. Based on this new type of community, SAIS achieves a better performance than existing popular social community-based data forwarding algorithms in practice, including Simbet, Bubble Rap and Nguyen's Routing algorithms.

Rethinking schools and community : the knowledge producing school

Schools appear in some accounts of community informatics as part of community, one of a number of organisations that need to be taken into account, perhaps on the basis of them being useful physical or human resources around which community informatics might be based. For their part, schools, at least in Australia, have been an important, early element in the broad take-up of computing and communication technologies (CCTs) by the community. Apart from the possibility of using school resources to support community access out of school time and based on what is published in both fields, schools and work in community informatics have tended to operate independently of one another. There are, nonetheless, interesting parallels in these two broad areas of activity which promote the use of CCTs. This chapter outlines a new research agenda in which schools produce knowledge for local community and in doing so develop new and productive community partnerships. The development provides interesting opportunities for the transformation of regions via this approach to community informatics. The background to this project is based in the long history of using CCTs in schools. The chapter will argue that the way in which schools understand CCTs is crucial to shaping what is possible to be done with CCTs in schools. Shifting the emphasis from information to relationships opens up alternatives that provide opportunities for significant, new relationships with community.

The emergence of an online learning community in first year tertiary studies in psychology

The introduction of an online supported, resource based learning environment into a large, multi-modal first year psychology unit led to the spontaneous development of a small, but active, learning community. While off campus students were more active online contributors, many other students "observed" these interactions, not actively contributing but finding the discussion postings valuable to their learning. Overall, use and perceived value of the online communication facilities were related to how confident students were that they had an appropriate study strategy, with off campus and older students reporting greater confidence in their study approach. The results highlight that the nature and function of learning communities for large, multi-modal foundation units are quite different to those typically articulated in the literature and are worth further investigation.

Reflexive modernity and the art of public communication

In 2000, Victoria’s largest regional council, the City of Greater Geelong, allocated $200,000 to fund a community art and place-making project in inner Geelong West. The Walk West project was conceptualised and lobbied by a community group for six years. The project addressed the impact of a large section of freeway installed in the seventies and its consequences for quality of life in the locality.

This article reports on an example of highly developed community relations. It examines public art and placemaking as public communication tools and their relationship to political and social activity in post-amalgamation Victoria. In particular it applies the theories of Ulrich Beck and the notion of reflexive modernity in risk society where citizens’ initiative groups will play an increasingly important role in reclaiming the biological and cultural heritage lost as a result of ‘progress’.

The education needs of caregivers of stroke survivors in acute and community settings

Stroke is a major cause of chronic illness in Australia, where it is estimated that between 200,000 and 250,000 people live with disabilities due to stroke. Given stroke's effect on survivors and the accompanying burden on caregivers, attention should be given to addressing the needs of caregivers of stroke survivors because they are central to supporting survivors living in the community. Research has shown that the information needs of caregivers are not being met across healthcare settings. Thus, some attention must be given to the development of educational materials that address caregiver needs. In this study we interviewed caregivers to determine their perspectives on support and educational needs at two different stages in the recovery of the stroke survivor: the acute hospital and the community. Despite a high level of uncertainty among caregivers in the acute and community settings, limited information was provided to assist them in their new role. A multifaceted approach would involve the development and implementation of specifically designed educational materials for caregivers, the use of a tool such as a patient-held record to assist in and improve the continuity and communication of care, and the provision of ongoing support from a stroke nurse practitioner who would follow stroke survivors from the acute setting to the community. This approach should be evaluated so that the important issue of addressing caregiver needs is given its due attention.

Collaborative online projects in a global community

What is evident in recent literature reviews of the use of Information and Communication Technologies (ICT) in Education is the lack of accessible documentation on the development of, and participation in, collaborative online projects by educationalists. (Blackmore et. al. 2002, Downes et. al. 2001). The major source of information comes in the form of anecdotal evidence from teachers, project facilitators and organisations (Gragert 2000, Carr 2001, Tate 1998, Robertson 1999). Other literature reviews and research that focus on the use of ICT in education have significant gaps in this area and yet it is increasingly promoted in educational policy and supported and promoted by education systems.

This paper identifies and explores the extent and impact of educational technology in the context of collaborative online projects in a global educational community. A general identification of a wide range of local and international collaborative online projects and the groups/communities in which they operate, is followed by a closer look at a selection of case study projects. The case study projects have been selected for their potential to provide new perspectives on the role of technology in education and its potential impact on teaching and learning in a global context.

This paper provides definitions and examples of collaborative online projects, their history and their diversity. It explores the level of participation afforded by the projects and presents a detailed section that focuses on a sample of projects. The collaborative online projects in the case study section are The Environmental Mystery Competition, The First People's Project, Lewin - an Anthology of Children's' Writing and The Teddy Bear Project. The case study projects will be looked at from the perspective of the project facilitators and project participants. In many of the projects items such as books and calendars are products of the projects. Examples of these items will be shown in the presentation.

Communication dynamics : discussion boards, weblogs and the development of communities of inquiry in online learning environments

Online learning environments (OLEs) are now critical to teaching and learning across Australian higher education. Their influence impacts on the availability of content, the design of courses and, perhaps most pedagogically significantly, the nature of communication. The discussion board is the ubiquitous communication tool within these OLEs and hence significantly shapes the kind of communication that takes place. In light of this, the degree to which a successful community of inquiry can be facilitated through the use of discussion boards is examined and compared to the possibilities afforded by weblogs in the same role. Weblogs, it is argued, offer new opportunities in the development of social, cognitive and teacher presence online and should be considered in the development of or alongside established OLEs.

Beyond pretence: new sensibilities for computing and communication technologies in teacher education

Making particular reference to schools’ traditional relationships with CCTS (and the kinds of ‘pretend’ and ‘artificial’ learning/assessment tasks that this relationship has historically produced), this paper details a research and teaching agenda focused on exploring the potential of having students work on tasks with value to local and/or school communities. The paper maps the informing theories and current practices of schools
participating in the ‘knowledge producing schools’ (KPS) agenda. Particular attention is given to the ways in which KPS schools are better positioned to respond to the needs of diverse student/community populations, particularly those students traditionally perceived as ‘at risk’.

The evolution of an online community - a case study

This article reflects findings from a long term case study of an online community of practice established through a network for the professional education of teachers in Ontario, Canada. The Education Network of Ontario/Réseau éducatif de l'Ontario (ENO/REO) was created in 1992–1993 to support and connect teachers from kindergarten to grade 12 in the province of Ontario. Its mandate was to ensure that all teachers had free access to the Internet and to each other and to encourage the development of skills in the area of information and communication technology with the ultimate goal of using those skills to improve classroom practice. The study investigated whether information technology had the potential to connect teachers to each other in order to build the capacity to create networks where professional learning could take place in a cost-efficient and flexible time and/or place. It was found that participants were early adopters who enjoyed innovation, that online networkswere supportive for learning but hard to maintain over time, and though they supported the integration of technology in the classroom, other barriers within schools could challenge this effect.

E-Governance in Australian local government: spinning a web around community?

Local government in Australia is under pressure to modernize its structures in the new public management environment, as well as respond to  increasing demands from its local electorates for better delivery of services and greater levels of participation in the democratic process. This article analyzes local government’s response to these pressures through its use of information communication technologies (ICT) to execute its broad range of tasks. I begin by discussing e-governance in the light of Chadwick and May’s (2003) three basic models of interaction between the state and its citizens: managerial, consultative, and participatory. Using data collected from an analysis of 658 local government Web sites in Australia together with existing survey research, I analyze the extent to which local government sites fit into the three models. The article then concludes with a discussion of the issues and problems faced by local government in its attempt to develop e-governance, as both an extension of its administrative as well as democratic functions.

The role of communication in meeting MPA objectives

Marine Protected Areas (MPAs) play an important role in conserving the marine environment. An integral part of managing MPAs is communicating to its users and the broader community the existence of the park and its regulations. In two studies looking at the Victorian Marine National Parks and Sanctuaries it was found that there was a low level of awareness of the parks existence [1]. Television news was found in both studies to account for the majority of respondents awareness yet television advertisements were the main media used to inform the community, along with signage at parks and sanctuaries [2].

Education and communication are the main ways that management agencies inform the broader community about the parks and the regulations governing their management. They are generally directed at two main groups: formal education within schools and universities and communication towards the wider community. Communicating to the broader community the existence of an MPA is achieved through signs, brochures, self guided or ranger walks. These are developed by education experts within management agencies. Yet little is known of the public’s level of knowledge about MPAs or the marine environment. Therefore, our research aims to discover the communities existing knowledge of MPAs and the marine environment and how this can help create effective communication strategies. This research focuses on the public who use MPAs and the wider community in Victoria, Queensland and Western Australia.

Communication challenges for partner organisations

Many people not directly involved in developing, maintaining and evaluating business–community partnerships tend to assume that such partnerships are one of two types: an add-on to an organisation’s core business or a fundraiser for an NGO. There are lots of examples of these two categories of “partnership” around the world, but there are considerably fewer of a third type – where the partnership is part of “core business” and as such is deeply embedded in the more forward-looking companies and community organisations that implement them, and also achieves significant internal impact. This situation raises some interesting communication
challenges.