Death Before Life: An Analysis of Emerging Adults' Knowledge and Attitudes Regarding End-of-Life Decision Making

This study sought to address the significant paucity in the medical decision making literature regarding the knowledge and attitudes of emerging adults toward advance care planning. Using a mostly qualitative approach, we attempted to document several dimensions of preferences and perspectives within a population well known for risk-taking behaviors, which may result in death, serious injury, and states of decisional incapacitation. Fifty-six undergraduates from two Pittsburgh universities took part in six focus group interviews between February-April 2007. Using a semi-structured focus group guide, participants were led through discussions on hypothetical end-of-life care scenarios, eliciting their views on Living Wills, Health Care Proxies, preferences for surrogates and their behaviors, and for life-sustaining treatment. Content analysis revealed inter-subject variability and intra-subject inconsistency among participants within all domains analyzed. Fifty-six percent of our sample had correct knowledge of advance directives, while only 10% understood that they offer proxy designation. Themes related to age-mediated invincibility, decreased risk perception, and an inexperience with morbidity and mortality relative to their elders emerged from the data. The findings of our study underscore the need for a through, quantitative effort to examine this volatile population's familiarity and attitudes regarding decisional incapacitation and the legal provisions in place to ensure autonomous and/or shared decision making. Additionally, we review the psychosocial literature related to advance care planning and apply it to this population, suggesting that current legal statutes are inappropriate for this age group, given their ongoing individuation and identity development

Components of palliative care interventions addressing the needs of people with dementia living in long term care: a systematic review

© The Author(s) 2020. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).Background: People with dementia requiring palliative care havemultiple needs that require complex, multicomponent interventions. Thisneed is amplified in the long term care setting. The European Associationfor Palliative Care (EAPC) White Paper offers recommendations forpalliative care in dementia and highlights domains of care integral forthis population, thus providing useful guidance to developing suchinterventions. This review maps components of palliative careinterventions for people with dementia in LTCFs, with a particular focuson shared decision-making.Peer reviewe

Decision-making and ante-natal screening for sickle cell and thalassaemia disorders : To what extent do faith and religious identity mediate choice?

When making decisions about prenatal diagnosis, couples not only draw on their understanding of the condition but also broader aspects of their cultural identity. This article looks at how faith and religion mediate attitudes towards screening, prenatal diagnosis and termination of pregnancy for sickle cell and thalassaemia disorders. The article specifically reports on a qualitative study, which used focus groups from a variety of faith communities (Muslim, Sikh, Hindu and Christian), at risk of haemoglobin disorders, living in England. Our findings suggest that the decision about whether or not to have diagnostic testing generally related to attitudes towards the termination of pregnancy. The consequences of the condition were as important as religious beliefs to most people. More generally, faith beliefs emerged as negotiable and contingent: realized within a broader moral framework. Religion was felt not to be prescriptive and reproductive decisions were seen as personal. When making decisions, people utilize faith within a broader context of individual, family and social relationships

Group Maintenance Behaviors in the Decision-Making Styles of Self-Organizing Distributed Teams

Businesses, universities, and other organizations are increasingly reliant on self-organizing, distributed teams which are enabled by information and communication technologies (ICTs). However, inherent geographical, organizational, and social limitations of ICTs challenge the relationships necessary for groups to make effective decisions. Understanding how group maintenance plays out within the context of different styles of decision making may provide insight into social tactics undertaken in such teams. Group maintenance is defined as discretionary, relation-building behavior that enables group members to trust and cooperate with one another more easily [1]. Decision style refers to the extent to which group decision making involves a broad contribution from group members other than leaders. It may range from the most autocratic style where a decision is made by one or a few individuals, to truly collaborative where every member has the opportunity to affect the decision. This study examines group maintenance within decision-making behaviors of Free/Libre Open Source Software (FLOSS) development teams as examples of distributed teams. Most FLOSS software is developed by such teams that are both dynamic and self-organizing, comprised of professionals, users, and other volunteers working in a loosely coupled manner [2-4]. These teams are nearly entirely virtual in that developers contribute from around the world, meet face-to-face infrequently (if at all), and coordinate their activities primarily through computer-mediated communications (CMC) [6, 7]

The importance of participatory communication for the voluntary medical male circumcision (VMMC) project in Alexander township in Gauteng, South Africa

A dissertation submitted to the Faculty of Humanities, in fulfilment of the requirements for the degree of Masters of Arts in Journalism and Media Studies at the University of the Witwatersrand in 2016The research set out to investigate how the Voluntary Medical Male Circumcision (VMMC) programme in South Africa facilitated stakeholder participation in its communication processes to improve the uptake of services in the context of national targets. Studies reviewed have highlighted challenges in the implementation of the participatory model to achieve communication goals. This qualitative study used document analysis, in-depth interviews and Focus Group Discussions (FGDs) for data collection. The research has revealed other limiting factors including unequal opportunities to influence decisions as a result of varying levels of authority and access to mediated public spheres. While those with power end up being further empowered through participatory approaches in terms of voice and visibility, the representation of the inputs of the lower level stakeholder group is limited to head count. A five-day visit to a VMMC clinic in Alexandra Township attributes marginalisation by exclusion from decision-making processes as one of the reasons for people’s inability to translate knowledge into the positive public response. The study was inconclusive about the influence of the model on the actual service uptake because the purpose was to provide a textual description of the participants’ experiences and not the impact.XL201

What do learners want from computer mediated communication systems?

Computer-mediated communication (CMC) in education has both benefits and problems. The benefits could be increased and the problems alleviated by improved design of CMC systems. Following a user-centred design approach, interviews were therefore carried out with distance learners who use CMC systems. The aim was to elicit ideas for improvements, and to discover which features students find helpful and unhelpful. Ten students of the UK Open University, which uses the FirstClass computer conferencing system, were interviewed individually or in a focus group. Observations of students using the system were also carried out. The study revealed three major areas where enhancements are needed: dealing with information overload; increasing social presence; and providing tools for synchronous communication. The importance of a personalised interface and a high degree of user control were also highlighted

What and how: doing good research with young people, digital intimacies, and relationships and sex education

© 2020, © 2020 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. As part of a project funded by the Wellcome Trust, we held a one-day symposium, bringing together researchers, practitioners, and policymakers, to discuss priorities for research on relationships and sex education (RSE) in a world where young people increasingly live, experience, and augment their relationships (whether sexual or not) within digital spaces. The introduction of statutory RSE in schools in England highlights the need to focus on improving understandings of young people and digital intimacies for its own sake, and to inform the development of learning resources. We call for more research that puts young people at its centre; foregrounds inclusivity; and allows a nuanced discussion of pleasures, harms, risks, and rewards, which can be used by those working with young people and those developing policy. Generating such research is likely to be facilitated by participation, collaboration, and communication with beneficiaries, between disciplines and across sectors. Taking such an approach, academic researchers, practitioners, and policymakers agree that we need a better understanding of RSE’s place in lifelong learning, which seeks to understand the needs of particular groups, is concerned with non-sexual relationships, and does not see digital intimacies as disconnected from offline everyday ‘reality’

Building an alternative social currency: Dematerialising and rematerialising digital money across media

This paper reports on the user experience and design of physical and digital forms of a mixed-media local currency. We reconceive digitally mediated transactions as social interactions and report on the development of conceptual designs informed by user research and interactive workshops. Our findings show that use is strongly tied to conceptions of locality and community, markers of identity, information exchange and the digital and physical forms as tools for shaping interactions. The form of the currency can make the invisible visible, exposing our identities and values, business models, and the details of the transactions themselves. Our analysis stresses the need to provide opportunities for extending social interaction, making more local connections and deriving the best value from those connections, without insulating individuals from each other, or from the wider geographical context. Themes that emerged from the user research were visualized as conceptual designs for digitally augmented media, allowing us to explore the monetary transaction at three levels: the material, as interaction between two parties, and the context of the transaction.The RCUK Digital Economy theme (EP/K012304/1)