scholarly journals The Lived Temporalities of Prognosis

2021 ◽  
Vol 39 (2) ◽  
pp. 138-155
Author(s):  
Dikaios Sakellariou ◽  
Nina Nissen ◽  
Narelle Warren
Keyword(s):  
Lived Experience ◽  
Early Death ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
The Future ◽  
To Come ◽  
Over Time ◽  
Do So

In this article, we explore the ways in which a man with motor neurone disease, Gareth, and his wife and carer, Maggie, enact different temporal orientations, when the expected future, an early death, does not arrive. We attend to the tensions between everyday priorities and uncertain futures to discuss the ways Gareth and Maggie negotiate action to deal with problems that are yet to come, but, despite this, already matter. We argue that prognosis thrusts people towards multiple presents and futures; while the future is fixed in time through prognosis and repaired through present action, it is also unfixed as lived experience unfolds over time. What emerges is a dialogue between multiple futures, pre-determined and uncertain, and practices that aim to repair the future, even if they cannot do so.

Factors to consider for motor neurone disease carer intervention research: A narrative literature review

2016 ◽  
Vol 15 (5) ◽  
pp. 600-608 ◽  
Author(s):  
Cathy Gluyas ◽  
Susan Mathers ◽  
Nicole Hennessy Anderson ◽  
Anna Ugalde
Keyword(s):  
Social Support ◽  
Lived Experience ◽  
Psychosocial Intervention ◽  
Emotional Health ◽  
Intervention Research ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Factors Affecting ◽  
Narrative Literature Review ◽  
Relationship Factors

ABSTRACTObjective:The experience of caregiving in the context of motor neurone disease (MND) is extremely challenging. Over the past 15 years, quantitative and qualitative studies have delineated the psychosocial aspects of this experience, exploring its impact on caregivers' quality of life, rates of depression, distress, anxiety, and burden. Our paper aimed to provide an overview of the lived experience of MND caregivers, identifying the variables that can influence MND caregiver functioning that are relevant to the development of an intervention.Method:A narrative review was conducted, synthesizing the findings of literature retrieved from 2000 to early 2016.Results:A total of 37 articles were included in the review. The articles varied considerably in terms of methodology and quality. The main influential aspects reported and identified were factors pertaining to the patient, factors intrinsic to the caregiver, relationship factors, and social support factors.Significance of Results:There is evidence to support the fact that caregivers have poorer outcomes when they care for patients with a more severe clinical profile, poorer emotional health or neurobehavioral concerns, or when the caregivers themselves struggle with adaptive problem-solving and coping skills. The availability and use of social support are also likely to be important for caregiver psychosocial outcomes. Further investigation is required to clarify the influence of changes in the relationship with the patient. Significant factors affecting the caregiver experience are considered in relation to their amenability to psychosocial intervention. Recommendations are made regarding the optimal features of future psychosocial intervention research.

scholarly journals The Sciences During the New Common: A Missed Opportunity?

2021 ◽  
pp. 111-116
Author(s):  
Maurits Kaptein
Keyword(s):  
Everyday Life ◽  
Economic Consequences ◽  
Current Crisis ◽  
The Future ◽  
Long Time ◽  
To Come ◽  
Missed Opportunity ◽  
Do So

AbstractBy Wednesday, July 22, 2020, the coronavirus had killed over 611,000 people and infected over fourteen million globally. It devastated lives and will continue to do so for a long time to come; the economic consequences of the pandemic are only just starting to materialize. This makes it a challenging time to write about the new common. However, we need to start somewhere. At some point, we need to reflect on our own roles, the roles of our institutions, the importance of our economy, and the future fabric of everyday life. In this chapter, I will discuss one minor—and compared to the current crisis seemingly inconsequential—aspect of the new common: I will discuss my worry that we are on the verge of missing the opportunity to properly (re-)define the role of the sciences as we move from our old to our new common.

Science frictions : science, folklore, and "the future"

2019 ◽  
Author(s):  
◽  
London Brickley
Keyword(s):  
Popular Science ◽  
University Of Missouri ◽  
The Future ◽  
Contemporary Status ◽  
The Subject ◽  
To Come ◽  
Scientific Truth ◽  
The University ◽  
Over Time

[ACCESS RESTRICTED TO THE UNIVERSITY OF MISSOURI AT REQUEST OF AUTHOR.] Folklore and science, along with the subject of the future which has slowly over time worked its way into the discourses of both, have a long, complicated history together. One that lives on in the present. (And one that might even prevail into the time to come). This work is not entirely that story. But it is a part of it, presented here as it is in the interest of opening new channels of discourse between two areas of research that are often seen by participants on all sides to be rather divergent, if not entirely oppositional to one another. This exploration culminates in a consideration of the contemporary status of popular science trends and how folklore might continue to operate within them--a proposal which identifies an increasingly emergent (although certainly not exclusively novel) form of folk expression that arises out of the friction caused by queries of scientific "truth," "promise," and "possibility" that is still stuck in a liminal wait for "the future." Both a widespread present-day phenomenon and subsequent set of narratives, expressions, beliefs, and actions that this work has chosen to call "science frictions."

Rethinking professional collaboration and agency in a post-pandemic era

2020 ◽  
Vol 5 (3/4) ◽  
pp. 337-341
Author(s):  
Paul Campbell
Keyword(s):  
Lived Experience ◽  
Design Methodology ◽  
Lessons Learned ◽  
Teacher Leader ◽  
Professional Collaboration ◽  
Education Systems ◽  
Content Type ◽  
The Future ◽  
Over Time

PurposeThis paper explores the role of professional collaboration and agency during the global COVID-19 pandemic and possible lessons for the future from the perspective of a teacher, leader and postgraduate researcher.Design/methodology/approachThis essay explores the complex role of collaboration and agency in responding to the challenges arising during the global COVID-19 pandemic utilizing research as well as the author's lived experience.FindingsThe author finds that through a renewed emphasis on effective professional collaboration and agency, not only are there opportunities to embed lessons learned during the COVID-19 pandemic, there is also scope to work towards education systems that reflect the complex global socio-political contexts communities may find themselves in and the evolving needs that result from them.Originality/valueThis paper offers insights into the work of teachers and school leaders, the increasing complexity of their roles over time, and particularly during the COVID-19 pandemic, considering what this might mean for the future.

scholarly journals What if Imagination Were Real?

2021 ◽  
Vol 4 (2) ◽  
pp. 64-88
Author(s):  
Maja Ejrnæs
Keyword(s):  
Lived Experience ◽  
Performance Art ◽  
Pretend Play ◽  
Performance Group ◽  
Anthropological Study ◽  
The Future ◽  
Transformative Impact ◽  
Over Time

This article explores extremity in performance art from the perspective of an insider. The article contributes with ethnographic insights on liminality and lived experience in performance art, which is still an unexplored field of anthropological study. It investigates how the Copenhagen-based performance group called Sisters Hope intentionally evoke examples of (and for) a future Sensuous Society. It argues that framing is key to what Sisters Hope examples evoke and whether they ‘work’ as intended; as transformative counterparts to ‘the outside world’. While extremity may take on the appearance of shocking contrasts, it is also emphasized as a matter of blurry boundaries in the selected performance art examples. In this context, extremity is cast as radical risk and potentiality that shake or transform experienced reality. The paper argues that Sisters Hope participants navigate in what if modes where sensations in the present and hopes for the future overlap in utopian performatives here and now. Through engagement with performance art examples over time, pretend play can transform into experienced authenticity, and this may eventually reverse experiences of what is ordinary and extreme for the immersed participant. The paper ends with a contemplation on whether the transformative impact of performance art examples is limited by societal fear of the unknown.

The “Next” Effect: When a Better Future Worsens the Present

2021 ◽  
pp. 194855062110349
Author(s):  
Ed O’Brien
Keyword(s):  
Random Assignment ◽  
Novel Technologies ◽  
Future Improvement ◽  
The Future ◽  
Domains Of Life ◽  
To Come ◽  
Over Time ◽  
As If

Various domains of life are improving over time, meaning the future is filled with exciting advances that people can now look forward to (e.g., in technology). Three preregistered experiments ( N = 1,602) suggest that mere awareness of better futures can risk spoiling otherwise enjoyable presents. Across experiments, participants interacted with novel technologies—but, via random assignment, some participants were informed beforehand that even better versions were in the works. Mere awareness of future improvement led participants to experience present versions as less enjoyable—despite being new to them, and despite being identical across conditions. They even bid more money to be able to end their participation early. Why? Such knowledge led these participants to perceive more flaws in present versions than they would have perceived without such knowledge—as if prompted to infer that there must have been something to improve upon (or else, why was a better one needed in the first place?)—thus creating a less enjoyable experience. Accordingly, these spoiling effects were specific to flaw-relevant stimuli and were attenuated by reminders of past progress already achieved. All told, the current research highlights important implications for how today’s ever better offerings may be undermining net happiness (despite marking absolute progress). As people continually await exciting things still to come, they may be continually dissatisfied by exciting things already here.

The Carers' Alert Thermometer (CAT): supporting family carers of people living with motor neurone disease

2019 ◽  
Vol 15 (3) ◽  
pp. 114-124
Author(s):  
Mary R O'Brien ◽  
Barbara A Jack ◽  
Karen Kinloch ◽  
Oliver Clabburn ◽  
Katherine Knighting
Keyword(s):  
Online Survey ◽  
Telephone Interview ◽  
Motor Neurone ◽  
Screening Tools ◽  
Motor Neurone Disease ◽  
Evidence Based ◽  
Family Carers ◽  
Change Over Time ◽  
Need For Support ◽  
Over Time

Background: Burden and distress among family carers of people living with motor neurone disease (MND) are reported widely. Evidence-based screening tools to help identify these carers' needs and plan appropriate support are urgently needed. Aim: To pilot the Carers' Alert Thermometer (CAT), a triage tool developed to identify carers' needs, with family carers of people living with MND to determine its usefulness in identifying their need for support. Methods: Training workshops with MND Association visitors (AVs) and staff in southwest and northwest England, followed by implementation of the CAT. A self-completed online survey and semi-structured telephone interview evaluated use of the CAT. Findings: Sixteen participants completed the online survey with 11 volunteering to be interviewed. The CAT has potential to map change over time, help to focus on carers' needs and improve communication with carers. Conclusion: The CAT provides a structure enabling AVs to engage in a meaningful process with family carers to identify and discuss their needs.

SECOND LANGUAGE ACQUISITION AND APPLIED LINGUISTICS

2000 ◽  
Vol 20 ◽  
pp. 165-181 ◽  
Author(s):  
Diane Larsen-Freeman
Keyword(s):  
Second Language ◽  
Second Language Acquisition ◽  
Language Acquisition ◽  
Real World ◽  
Specific Problem ◽  
Applied Linguistics ◽  
The Future ◽  
To Come ◽  
Do So

Just as applied linguistics (AL) may be said to be an emerging discipline, so too is one of its sub-fields, second language acquisition (SLA). The parallelism may not be surprising; after all, a difference of only about twenty years separates the points at which the two were identified as autonomous fields of inquiry. Then, too, the two share central defining concepts. AL draws on multidisciplinary theoretical and empirical perspectives to address real-world issues and problems in which language is central (Brumfit 1997). SLA draws on multidisciplinary theoretical and empirical perspectives to address the specific issue of how people acquire a second language and the specific problem of why everyone does not do so successfully. Furthermore, the two share something else: At this juncture in the evolution of AL and SLA, both are grappling with fundamental definitional issues, ones even extending to the nature of language itself. (See Larsen-Freeman 1997a for how this is true of AL.) Should AL and SLA deal successfully with these challenges, both will have much to contribute in the decade to come. Should they instead succumb to internecine feuding and fragmentation, the future will not be as bright.

scholarly journals The Lived Experience of Diagnosis Delivery in Motor Neurone Disease: A Sociological-Phenomenological Study

2013 ◽  
Vol 18 (2) ◽  
pp. 36-47 ◽  
Author(s):  
Amanda Pavey ◽  
Jacquelyn Allen-Collinson ◽  
Toby Pavey
Keyword(s):  
Lived Experience ◽  
Health Professionals ◽  
Professional Training ◽  
Phenomenological Study ◽  
Mode Of Delivery ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Sociological Study ◽  
Qualitative Approaches ◽  
Phenomenological Perspective

Relatively few previous studies of individuals receiving a diagnosis of Motor Neurone Disease within the UK health care system have employed qualitative approaches to examine the diagnostic journey from a patient perspective. A qualitative sociological study was undertaken, involving interviews with 42 participants diagnosed with MND, to provide insight into their experiences of undergoing testing and receiving a diagnosis. Adopting a sociological-phenomenological perspective, this article examines key themes that emerged from participant accounts surrounding the lived experience of the diagnostic journey. The key themes that emerged were: The diagnostic quest; living with uncertainty; hearing bad news; communication difficulties; and a reified body of medical interest. In general, doctor-patient communication both at pre and post diagnosis was experienced as highly stressful, distressing and profoundly upsetting. Participants reported such distress as being due to the mode of delivery and communication strategies used by health professionals. We therefore suggest that professional training needs to emphasize the importance to health professionals of fostering greater levels of tact, sensitivity and empathy towards patients diagnosed with devastating, life-limiting illnesses such as MND.

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