'A bed in the middle of nowhere': parents' meanings of place of death for adults with cystic fibrosis

As populations age and chronic conditions become more prevalent, an individual's ability to choose the location of their end-of-life care and death is increasingly considered important in the provision of good healthcare, with home implied as the 'best' place of death through UK government policy and specialist and voluntary palliative care services. However, considering meanings of place of end-of-life care and death is complex for young adults with life-limiting conditions where the disease course is variable and uncertain, and aggressive and palliative treatments are administered both at home and in hospital often until death. Although 'place' is a pivotal element in healthcare practice, research and policy, there has been little attempt to understand the meaning and importance of place in understanding experiences of care at end of life. Through analysis of in-depth interviews and letters received from parents of 27 young adults in England, Scotland and Wales who died from cystic fibrosis from 1999 to 2002 aged 17-36 years, key factors that influence families' meanings of place at end of life are presented. Both home and hospital deaths are reported, with no deaths in hospices. Preferences for possible locations of death are generally limited early in the disease course by choice of aggressive treatment, particularly lung transplantation. Rate of health decline, organisation and delivery of services, and relationships with specialist and general healthcare staff strongly influence parents' experience of death at home or in hospital, although no physical location was regarded a 'better' place of death. Meanings of, and attachment to place are mediated for families through these factors, questioning the appropriateness of a 'home is best' policy for those dying from life-limiting conditions. © 2009 Elsevier Ltd. All rights reserved

Unsolicited written narratives as a methodological genre in terminal illness: challenges and limitations

Stories about illness have proven invaluable in helping health professionals understand illness experiences. Such narratives have traditionally been solicited by researchers through interviews and the collection of personal writings, including diaries. These approaches are, however, researcher driven; the impetus for the creation of the story comes from the researcher and not the narrator. In recent years there has been exponential growth in illness narratives created by individuals, of their own volition, and made available for others to read in print or as Internet accounts. We sought to determine whether it was possible to identify such material for use as research data to explore the subject of living with the terminal illness amyotrophic lateral sclerosis/motor neuron disease—the contention being that these accounts are narrator driven and therefore focus on issues of greatest importance to the affected person. We encountered and sought to overcome a number of methodological and ethical challenges, which is our focus here

Designing Blockchain based services

Distributed Ledgers or Blockchain-based systems have the potential to provide enablers for the development of future services. By combining deep encryption, tamper-proof transparency and secure personal data to a wide variety of services, there are great opportunities for the development of new services. In developing new service experiences that capitalise on the potential benefits of Blockchain, there are a number of key challenges. These include: Emerging opportunities for services provided by blockchain Blockchain as an Identity Enabler Public perceptions and confusion about blockchain Issues of privacy, mistrust of data storage and possible leakage Design methodologies for services to guide users through new blockchain automated and frictionless experiences This short practice-based paper presents a case study and reflects on the learnings and experience of designing services utilising blockchain technology for digital identity. The paper identifies issues and problems and provides a comprehensive review of the benefits to establish a framework for designing services around distributed ledger blockchain based services

Designing Blockchain enabled customer experiences for new digital services

This practice-based paper presents a case study of designing services utilising blockchain technology. Blockchain provides an extremely secure record of transactions and has the potential to simplify and automate many complex processes. In this example Blockchain is used to validate a person’s identity through a digital passport. In using Blockchain the customer journey becomes highly automated and has no points of user interaction, which user-research revealed has both benefits and disadvantages. The paper discusses the challenges and opportunities of highly automated processes and proposes a framework of design principles to be used when developing Blockchain and technology-based services that produce invisible processes

What Affects Engagement in an Educational Online Community? Investigating a Blended Learning Course for Primary School Teachers Undertaking Postgraduate Professional Development

articipating in e-learning communities is a valuable way of enhancing teachers’ professional development (PD). However, teachers’ engagement with asynchronous online platforms can be affected by feelings of anxiety, a perceived lack of connection to others and technology issues. The purpose of this study was to investigate the factors that affect students’ engagement with e-learning communities through asynchronous Blackboard Discussion Boards (BBDBs) in a blended PD course for primary school teachers. Using a case study approach produced rich data through the use of focus groups and interviews to explore students’ and tutors’ perceptions of the BBDBs, and their preferences for online and face-to-face learning. The overall finding revealed that participants’ engagement with online communities is affected by several interrelated factors, some of which distinctly relate to being human (i.e. emotions, relationships, power relations, agency, prior experiences and personality), whilst other factors relate to the usability of technology. These factors influenced the participants’ engagement with both the BBDBs and other online platforms. Additionally, this research identified that students created e-learning communities using social media platforms, which were a valuable source of professional, academic and personal support. This thesis contributes to the pedagogy and theory of e-learning communities through identifying several crucial elements which support the conditions required for people to make meaning with others through online communication. Through conceptualising online communication as a social literacy practice and closely examining how students experience the practices of face-to-face and online communication, this research extends the Literacies for Learning in Further Education framework, offering a contribution to the field of social literacy studies. Furthermore, through discovering that several complex interrelated human responses impact on people’s entanglement with others through online platforms, this thesis offers a contribution to the growing body of literature on posthumanism in digital education. These conclusions may be useful to educators who are designing online or blended learning courses in terms of understanding the factors that are crucial for meaningful engagement and learning

Inverse-kinematics one-neutron pickup with fast rare-isotope beams

New measurements and reaction model calculations are reported for single neutron pickup reactions onto a fast \nuc{22}{Mg} secondary beam at 84 MeV per nucleon. Measurements were made on both carbon and beryllium targets, having very different structures, allowing a first investigation of the likely nature of the pickup reaction mechanism. The measurements involve thick reaction targets and $\gamma$-ray spectroscopy of the projectile-like reaction residue for final-state resolution, that permit experiments with low incident beam rates compared to traditional low-energy transfer reactions. From measured longitudinal momentum distributions we show that the \nuc{12}{C} (\nuc{22}{Mg},\nuc{23}{Mg}+\gamma)X reaction largely proceeds as a direct two-body reaction, the neutron transfer producing bound \nuc{11}{C} target residues. The corresponding reaction on the \nuc{9}{Be} target seems to largely leave the \nuc{8}{Be} residual nucleus unbound at excitation energies high in the continuum. We discuss the possible use of such fast-beam one-neutron pickup reactions to track single-particle strength in exotic nuclei, and also their expected sensitivity to neutron high-$\ell$ (intruder) states which are often direct indicators of shell evolution and the disappearance of magic numbers in the exotic regime.Comment: 8 pages, 5 figure

Trials and tribulations: understanding motivations for clinical research participation amongst adults with cystic fibrosis

In the context of understanding motivations for clinical research participation, many authors consider issues such as informed consent and how patients perceive the research method and process. However, many investigations focus only on one method of research, most commonly the randomised controlled trial. Understanding how chronically ill members of one specific patient group respond to all requests for research participation are rare. Cystic fibrosis (CF), a genetic condition whereby those affected are used to taking a wide array of treatments and attending a specialist care centre over many years, and are generally knowledgeable about their condition, represents an ideal case for investigating how staff requests for clinical research participation are accepted or declined. Using Bloor's systems of relevance framework for risk behaviour and risk reduction, specialist CF centre patients' motivations for participation or non-participation in clinical research can be understood. The framework takes into account two sets of conceptual oppositions: habituation and calculation, constraint and volition. These oppositions represent a range along a continuum of risk behaviour rather than being absolute distinctions. Decisions to participate are influenced mainly by the patient's state of health at the time of request, the nature of the trial and the social context within which sufferers are placed. Understanding why chronically ill patients refuse some requests and yet accept others may assist researchers in designing protocols that take these factors into account and achieve the desired numbers of participants whilst protecting those in vulnerable positions. © 2005 Elsevier Ltd. All rights reserved

Spectroscopy of neutron-unbound 27,28^{27,28}F

The ground state of $^{28}$F has been observed as an unbound resonance $2\underline{2}0$ keV above the ground state of $^{27}$F. Comparison of this result with USDA/USDB shell model predictions leads to the conclusion that the $^{28}$F ground state is primarily dominated by $sd$-shell configurations. Here we present a detailed report on the experiment in which the ground state resonance of $^{28}$F was first observed. Additionally, we report the first observation of a neutron-unbound excited state in $^{27}$F at an excitation energy of $25\underline{0}0 (2\underline{2}0)$ keV.Comment: 10 pages, 11 figures, Accepted for publication in Phys. Rev.