The Process of Identity Management in Individuals Living with Systemic Scleroderma

ABSTRACT The Process of Identity Management in Individuals Living with Systemic Scleroderma Background: People with chronic illnesses may struggle to adapt psychologically to the illness experience and have feelings of identity loss, self-diminishment, and biographical disruption. This, in turn, may limit people’s ability to engage in optimal self-management. Systemic scleroderma is a debilitating, stigmatizing, and life limiting progressive chronic illness with significant disfiguring effects. Little is known about the identity management process in people with scleroderma. The purpose of this study was to generate a grounded theory of the identity management process in people with systemic scleroderma. Methods: Grounded theory methodology was used to uncover the basic social process of identity management in people living with systemic scleroderma. Fifteen women with systemic scleroderma were recruited using theoretical sampling to ensure representation of differing illness duration and progression. Semi-structured interviews were conducted in person or by phone, transcribed and analyzed using open, selective, and theoretical coding. Rigor was assured through multiple procedures. Results: Four core categories emerged. Adapting to Changes are the behaviors that participants struggled through to carry on with their everyday lives. Dismantling of Self was an internal process where participants lost their sense of self and purpose. Reclaiming Self was the basic social process that involved a deep internal process to include letting go, re-evaluating who they were inside, and realizing that who they were had never changed. Embracing Self was a transformative process that allowed participants to rewrite and rebuild their biographies, live with renewed purpose, intention, gratefulness, and appreciation of their contributions to others. Discussion: Findings suggest that the management of identity was important for understanding how people adapt to life with systemic scleroderma. This study can help nurses better understand how to support patients holistically with the management of systemic scleroderma

Exploring sensor data management

The increasing availability of cheap, small, low-power sensor hardware and the ubiquity of wired and wireless networks has led to the prediction that `smart evironments' will emerge in the near future. The sensors in these environments collect detailed information about the situation people are in, which is used to enhance information-processing applications that are present on their mobile and `ambient' devices.\ud \ud Bridging the gap between sensor data and application information poses new requirements to data management. This report discusses what these requirements are and documents ongoing research that explores ways of thinking about data management suited to these new requirements: a more sophisticated control flow model, data models that incorporate time, and ways to deal with the uncertainty in sensor data

How explicit are the barriers to failure in safety arguments?

Safety cases embody arguments that demonstrate how safety properties of a system are upheld. Such cases implicitly document the barriers that must exist between hazards and vulnerable components of a system. For safety certification, it is the analysis of these barriers that provide confidence in the safety of the system. The explicit representation of hazard barriers can provide additional insight for the design and evaluation of system safety. They can be identified in a hazard analysis to allow analysts to reflect on particular design choices. Barrier existence in a live system can be mapped to abstract barrier representations to provide both verification of barrier existence and a basis for quantitative measures between the predicted barrier behaviour and performance of the actual barrier. This paper explores the first stage of this process, the binding between explicit mitigation arguments in hazard analysis and the barrier concept. Examples from the domains of computer-assisted detection in mammography and free route airspace feasibility are examined and the implications for system certification are considered

Redefining the performing arts archive

This paper investigates representations of performance and the role of the archive. Notions of record and archive are critically investigated, raising questions about applying traditional archival definitions to the performing arts. Defining the nature of performances is at the root of all difficulties regarding their representation. Performances are live events, so for many people the idea of recording them for posterity is inappropriate. The challenge of creating and curating representations of an ephemeral art form are explored and performance-specific concepts of record and archive are posited. An open model of archives, encouraging multiple representations and allowing for creative reuse and reinterpretation to keep the spirit of the performance alive, is envisaged as the future of the performing arts archive

Knowledge Enhanced Notes (KEN)

To aid the creation and through-life support of large complex engineering products, organisations are placing a greater emphasis on constructing complete and accurate records of design activities. Current documentary approaches are not sufficient to capture activities and decisions in their entirety and can lead to organisations revisiting and in some cases reworking design decisions in order to understand previous design episodes. This paper presents an overview of the challenges in creating accurate, re-usable records of synchronous design activities, enhancing the through-life support of engineering products, followed by the development of an information capture software system to address these challenges. The main objectives for the development of the Knowledge Enhanced Notes system are described followed by the techniques chosen to address the objectives, and finally a description of a use-case for the system. Whilst the focus of the KEN System was to aid the creation and through-life support of large complex engineering products through constructing complete and accurate records of design activities, the system is entirely generic in its application to synchronous activities