Making sense of brain tumour: A qualitative investigation of personal and social processes of adjustment

This study investigated personal and social processes of adjustment at different stages of illness for individuals with brain tumour. A purposive sample of 18 participants with mixed tumour types (9 benign and 9 malignant) and 15 family caregivers was recruited from a neurosurgical practice and a brain tumour support service. In-depth semi-structured interviews focused on participants’ perceptions of their adjustment, including personal appraisals, coping and social support since their brain tumour diagnosis. Interview transcripts were analysed thematically using open, axial and selective coding techniques. The primary theme that emerged from the analysis entailed “key sense making appraisals”, which was closely related to the following secondary themes: (1) Interactions with those in the healthcare system, (2) reactions and support from the personal support network, and (3) a diversity of coping efforts. Adjustment to brain tumour involved a series of appraisals about the illness that were influenced by interactions with those in the healthcare system, reactions and support from people in their support network, and personal coping efforts. Overall, the findings indicate that adjustment to brain tumour is highly individualistic; however, some common personal and social processes are evident in how people make sense of and adapt to the illness over time. A preliminary framework of adjustment based on the present findings and its clinical relevance are discussed. In particular, it is important for health professionals to seek to understand and support individuals’ sense-making processes following diagnosis of brain tumour.

A sense of control : virtual communities for people with mobility impairments

The purpose of this book is to show why we should be concerned about virtual communities for people with physical, or more particularly mobility, impairments. The well-being model through a virtual community introduced here goes towards advancing the work begun by others, by adding for example a socio-political component. The model presented here provides practical insights into how strategic community investment can support people with disabilities and their families. Virtual communities are about engagement, quality of life and support, not just about information. The role of information technology in building and raising community capacity and social capital in socially and economically disadvantaged communities is also examined. Practical insights are offered into community support for people with chronic illness.

Making sense of dementia : understanding amongst indigenous Australians

Dementia is a growing health and social concern for all Australians. Whilst the prevalence of dementia amongst Australia's indigenous people is unclear, there is some evidence that dementia rates are five times that of the general Australian population. To date no studies have examined dementia knowledge levels in indigenous communities. Purpose of the study: This paper aims to explore indigenous Australians' understanding, knowledge and misconceptions of dementia. Design and methods: Hundered and seventy-four indigenous adults participated in a cross-sectional survey using a modified version of the Alzheimer's Disease Knowledge Test (ADK). The survey included demographic information, two open-ended questions and 20 multiple choice questions. Each ADK item was examined to identify responses that revealed commonly held correct beliefs, knowledge gaps and misconceptions. Results: The overall level of understanding of dementia was poor. Younger participants were significantly more likely to have no knowledge of Alzheimer's Disease, whereas the other age groups were most likely to have at least some knowledge. It was also revealed that there are common misconceptions about Alzheimer's Disease held by both indigenous and non-indigenous communities. Implications: Culturally appropriate awareness campaigns and targeted educational interventions need to be implemented to improve the general level of understanding of dementia in indigenous communities.

Online we are all able bodied : Online psychological sense of community and social support found through membership of disability-specific websites promotes well-being for people living with a physical disability

People with a physical disability are a population who for a number of reasons may be vulnerable to social isolation. Research into Internet-based support sites has found that social support and an online sense of community can be developed through computer mediated communication channels. This study aims to gain an understanding of the benefits that membership of disability-specific online communities may have for people with a physical disability. An online survey was administered to a sample of users of such sites (N = 160). Results indicated that users did receive moral support and personal advice through participating in such online communities. Further, results indicated that online social support and feeling a sense of community online were positively associated with participants' well-being in the areas of personal relations and personal growth.

Ceremony and cybrary : Digital libraries and the dialectic of place and space

This article examines social, cultural and technological change in the systems and economies of educational information management. Since the Sumerians first collected, organized and supervised administrative and religious records some six millennia ago, libraries have been key physical depositories and cultural signifiers in the production and mediation of social capital and power through education. To date, the textual, archival and discursive practices perpetuating libraries have remained exempt from inquiry. My aim here is to remedy this hiatus by making the library itself the terrain and object of critical analysis and investigation. The paper argues that in the three dominant communications eras—namely, oral, print and digital cultures—society’s centres of knowledge and learning have resided in the ceremony, the library and the cybrary respectively. In a broad-brush historical grid, each of these key educational institutions—the ceremony in oral culture, the library in print culture and the cybrary in digital culture—are mapped against social, cultural and technological orders pertaining to their era. Following a description of these shifts in society’s collective cultural memory, the paper then examines the question of what the development of global information systems and economies mean for schools and libraries of today, and for teachers and learners as knowledge consumers and producers?

‘Just stupid drama queens’ : how police constrain, regulate, and punish the public visibilities of sexual/gender diversity as out of place

Using interview data on LGBT young peoples’ policing experiences, I argue policing practices work to constrain public visibilities of sexual and gender diversity in public spaces. Police actions recounted by LGBT young people suggest the workings of a certain kind of visuality (Mason, 2002) and evidenced more subtle actions that sought to constrain, regulate, and punish public visibilities of sexual and gender diversity. Aligning with the work of sexualities academics and theorists, this paper suggests that, like violence is itself a bodily spectacle from which onlookers come to know things, policing works to subtly constrain public visibilities of “queerness”. Policing interactions with LGBT young people serves the purpose of visibly yet unverifiably (Mason, 2002) regulating displays of sexual and gender diversity in public spaces. The paper concludes noting how police actions are nonetheless visible and therefore make knowable to the public the importance of keeping same sex intimacy invisible in public spaces.

Designing and evaluating mobile multimedia user experiences in public urban places : Making sense of the field

The majority of the world’s population now lives in cities (United Nations, 2008) resulting in an urban densification requiring people to live in closer proximity and share urban infrastructure such as streets, public transport, and parks within cities. However, “physical closeness does not mean social closeness” (Wellman, 2001, p. 234). Whereas it is a common practice to greet and chat with people you cross paths with in smaller villages, urban life is mainly anonymous and does not automatically come with a sense of community per se. Wellman (2001, p. 228) defines community “as networks of interpersonal ties that provide sociability, support, information, a sense of belonging and social identity.” While on the move or during leisure time, urban dwellers use their interactive information communication technology (ICT) devices to connect to their spatially distributed community while in an anonymous space. Putnam (1995) argues that available technology privatises and individualises the leisure time of urban dwellers. Furthermore, ICT is sometimes used to build a “cocoon” while in public to avoid direct contact with collocated people (Mainwaring et al., 2005; Bassoli et al., 2007; Crawford, 2008). Instead of using ICT devices to seclude oneself from the surrounding urban environment and the collocated people within, such devices could also be utilised to engage urban dwellers more with the urban environment and the urban dwellers within. Urban sociologists found that “what attracts people most, it would appear, is other people” (Whyte, 1980, p. 19) and “people and human activity are the greatest object of attention and interest” (Gehl, 1987, p. 31). On the other hand, sociologist Erving Goffman describes the concept of civil inattention, acknowledging strangers’ presence while in public but not interacting with them (Goffman, 1966). With this in mind, it appears that there is a contradiction between how people are using ICT in urban public places and for what reasons and how people use public urban places and how they behave and react to other collocated people. On the other hand there is an opportunity to employ ICT to create and influence experiences of people collocated in public urban places. The widespread use of location aware mobile devices equipped with Internet access is creating networked localities, a digital layer of geo-coded information on top of the physical world (Gordon & de Souza e Silva, 2011). Foursquare.com is an example of a location based 118 Mobile Multimedia – User and Technology Perspectives social network (LBSN) that enables urban dwellers to virtually check-in into places at which they are physically present in an urban space. Users compete over ‘mayorships’ of places with Foursquare friends as well as strangers and can share recommendations about the space. The research field of Urban Informatics is interested in these kinds of digital urban multimedia augmentations and how such augmentations, mediated through technology, can create or influence the UX of public urban places. “Urban informatics is the study, design, and practice of urban experiences across different urban contexts that are created by new opportunities of real-time, ubiquitous technology and the augmentation that mediates the physical and digital layers of people networks and urban infrastructures” (Foth et al., 2011, p. 4). One possibility to augment the urban space is to enable citizens to digitally interact with spaces and urban dwellers collocated in the past, present, and future. “Adding digital layer to the existing physical and social layers could facilitate new forms of interaction that reshape urban life” (Kjeldskov & Paay, 2006, p. 60). This methodological chapter investigates how the design of UX through such digital placebased mobile multimedia augmentations can be guided and evaluated. First, we describe three different applications that aim to create and influence the urban UX through mobile mediated interactions. Based on a review of literature, we describe how our integrated framework for designing and evaluating urban informatics experiences has been constructed. We conclude the chapter with a reflective discussion on the proposed framework.

Projecting Computational Sense of Self: A Study of Transition in a Chronic Illness Online Community

We report on analysis of discussions in an online community of people with chronic illness using socio-cognitively motivated, automatically produced semantic spaces. The analysis aims to further the emerging theory of "transition" (how people can learn to incorporate the consequences of illness into their lives). An automatically derived representation of sense of self for individuals is created in the semantic space by the analysis of the email utterances of the community members. The movement over time of the sense of self is visualised, via projection, with respect to axes of "ordinariness" and "extra-ordinariness". Qualitative evaluation shows that the visualisation is paralleled by the transitions of people during the course of their illness. The research aims to progress tools for analysis of textual data to promote greater use of tacit knowledge as found in online virtual communities. We hope it also encourages further interest in representation of sense-of-self.

Understanding graphicacy : students’ making sense of graphics in mathematics assessment tasks

The ability to decode graphics is an increasingly important component of mathematics assessment and curricula. This study examined 50, 9- to 10-year-old students (23 male, 27 female), as they solved items from six distinct graphical languages (e.g., maps) that are commonly used to convey mathematical information. The results of the study revealed: 1) factors which contribute to success or hinder performance on tasks with various graphical representations; and 2) how the literacy and graphical demands of tasks influence the mathematical sense making of students. The outcomes of this study highlight the changing nature of assessment in school mathematics and identify the function and influence of graphics in the design of assessment tasks.

The culture of the journey as structure of the landscape: an inquiry on mobility facilities and identity of place

The structure of the travel, meant as cultural activity, is proposed as a key to read and design the urban or rural landscape.

Making sense of mass education

Making Sense of Mass Education provides a comprehensive analysis of the field of mass education. The book presents new assessment of traditional issues associated with education – class, race, gender, discrimination and equity –to dispel myths and assumptions about the classroom. It examines the complex relationship between the media, popular culture and schooling, and places the expectations surrounding the modern teacher within ethical, legal and historical contexts. The book blurs some of the disciplinary boundaries within the field of education, drawing upon sociology, cultural studies, history, philosophy, ethics and jurisprudence to provide stronger analyses. The book reframes the sociology of education as a complex mosaic of cultural practices, forces and innovations. Engaging and contemporary, it is an invaluable resource for teacher education students, and anyone interested in a better understanding of mass education.

Ageing out of place: health and well-being needs and access to home and aged care services for recently arrived older refugees in Melbourne, Australia

Recently arrived older refugees in resettlement countries are a particularly vulnerable population who face many risks to their health and well-being, and many challenges in accessing services.This paper reports on a project undertaken in Victoria,Australia to explore the needs of older people from 14 recently arrived refugee communities, and the barriers to their receiving health and aged care. Findings from consultations with community workers and service providers highlight the key issues of isolation, family conflict and mental illness affecting older refugees, and point to ways in which policy-makers and service providers can better respond to these small but deserving communities.

Making sense of mental illness as a full human experience : Perspective of illness and recovery held by people with a mental illness living in the community.

Recovery is a highly contextualized concept amid divergent interpretations and unique experiences. There is substantial current interest in building evidence about recovery from mental illness in order to inform best practice founded in the ways people find to live productive and meaningful lives. This paper presents some accounts related to recovery and illness expressed by eight people through a Participatory Action Research project. The research facilitated entry to the subjective experiences of living in the community as an artist with a mental illness. The people in the research shared an integrated understanding of illness, recovery and identity. Their understanding provided insight into mental illness as an inseparable aspect of who they were. Further, specific issue was raised of recovery as a clinical term with a requirement to meet distinct conventions of recovery. This paper emphasizes that being ill and being well, for the person with a mental illness, is a dynamic and complex development not easily explained or transformed into uniform process or outcomes. Attempts to establish an integral or consensual approach to recovery has, to date, disregarded mental illness as a full human experience. This paper argues that broader frameworks for thinking and responding to the dynamic processes of mental illness and recovery are needed and require acknowledgment of competing and contradictory ideas.