Family carers of individual’s living with Huntington’s Disease (HD) manage a distinct and unique series of difficulties arising from the complex nature of HD. This paper presents the validation of the definitive measure of quality of life for this group. The Huntington’s Disease Quality of Life Battery for carers (HDQoL-C) was expanded and then administered to an international sample of 1716 partners and family carers from 13 countries. In terms of the psychometric properties of the tool, exploratory analysis of half (...) of the sample, demonstrated good internal consistency and reliability. Some items on the full version did not meet psychometric thresholds and a short version (HDQoL-Cs) was developed based on more stringent criteria. Confirmatory Factor Analysis of the model structure showed a good fit for all Factors and, indicated that the HDQoL-C and HDQoL-Cs are psychometrically robust measures of quality of life. We found that carers who lived with and looked after their spouse/partner had reduced sense of coping, hope for the future and overall quality of life. Carers with children who were at risk, carried the gene or were symptomatic also had poorer quality of life outcomes. Findings indicated the HDQoL-C and HDQoL-Cs are valid in multiple languages and across varied cultures as measures of self-reported quality of life in family carers of individual’s living with HD. These psychometrically validated tools can aid and guide the implementation of therapeutic interventions to improve life quality in this population. (shrink)

Many formerly incarcerated people have civil legal needs that can imperil their successful re-entry to society and, consequently, their health. We categorize these needs and assess their association with cardiovascular disease risk factors in a sample of recently released people. We find that having legal needs related to debt, public benefits, housing, or healthcare access is associated with psychosocial stress, but not uncontrolled high blood pressure or high cholesterol, in the first three months after release.

The speed and scale of the COVID‐19 pandemic has highlighted the limits of current health systems and the potential promise of non‐establishment research such as “DIY” research. We consider one example of how DIY research is responding to the pandemic, discuss the challenges faced by DIY research more generally, and suggest that a “trust architecture” should be developed now to contribute to successful future DIY efforts.

The representational distortion (RD) approach to similarity (e.g., Hahn, Chater, & Richardson, 2003) proposes that similarity is computed using the transformation distance between two entities. We argue that researchers who adopt this approach need to be concerned with how representational transformations can be determined a priori. We discuss several roadblocks to using this approach. Specifically we demonstrate the difficulties inherent in determining what transformations are psychologically salient and the importance of considering the directionality of transformations.

Personalized medicine with its promise of developing interventions tailored to an individual's health need and genetically related response to treatment might seem a promising antidote to the documented underutilization of standard depression treatments by African Americans. In addition, understanding depression not merely in biochemical terms but also in genetic terms might seem to counter cultural beliefs and stigma that attach to depression when conceived as a mood or behavioral problem under an individual's control. After all, if there is one thing (...) for which a person is not responsible and cannot be blamed, it is her genes. Nevertheless, for multiple reasons, a personalized medical approach to depression treatment, and its attendant conceptualization of depression and treatment response as genetically influenced, present the risk of exacerbating well-documented disparities in access to, and utilization of, treatment for depression among African-American and Caucasian elderly adults. (shrink)

Using a queer theory and disrupting heteronormativity framework, we applied a model lesson in the elementary methods course to understand preservice teachers’ experiences with LGBTQ individuals and families and their beliefs about utilizing children׳s literature portraying LGBTQ families in the elementary classroom. Participants reported a range of personal experiences with LGBTQ individuals and families and relatively positive responses to the family text set presented but wavered on LGBTQ themed books due to perceived conflict, religious beliefs, and ideas about what is (...) appropriate content for young learners. A discussion of the findings also includes preservice teachers’ intentions for future teaching related to LGBTQ topics. Implications for teacher education and social studies education are explored. (shrink)

BackgroundFunding agencies have long used panel discussion in the peer review of research grant proposals as a way to utilize a set of expertise and perspectives in making funding decisions. Little research has examined the quality of panel discussions and how effectively they are facilitated.MethodsHere, we present a mixed-method analysis of data from a survey of reviewers focused on their perceptions of the quality, effectiveness, and influence of panel discussion from their last peer review experience.ResultsReviewers indicated that panel discussions were (...) viewed favorably in terms of participation, clarifying differing opinions, informing unassigned reviewers, and chair facilitation. However, some reviewers mentioned issues with panel discussions, including an uneven focus, limited participation from unassigned reviewers, and short discussion times. Most reviewers felt the discussions affected the review outcome, helped in choosing the best science, and were generally fair and balanced. However, those who felt the discussion did not affect the outcome were also more likely to evaluate panel communication negatively, and several reviewers mentioned potential sources of bias related to the discussion. While respondents strongly acknowledged the importance of the chair in ensuring appropriate facilitation of the discussion to influence scoring and to limit the influence of potential sources of bias from the discussion on scoring, nearly a third of respondents did not find the chair of their most recent panel to have performed these roles effectively.ConclusionsIt is likely that improving chair training in the management of discussion as well as creating review procedures that are informed by the science of leadership and team communication would improve review processes and proposal review reliability. (shrink)

Scientific peer reviewers play an integral role in the grant selection process, yet very little has been reported on the levels of participation or the motivations of scientists to take part in peer review. The American Institute of Biological Sciences developed a comprehensive peer review survey that examined the motivations and levels of participation of grant reviewers. The survey was disseminated to 13,091 scientists in AIBS’s proprietary database. Of the 874 respondents, 76% indicated they had reviewed grant applications in the (...) last 3 years; however, the number of reviews was unevenly distributed across this sample. Higher review loads were associated with respondents who had submitted more grant proposals over this time period, some of whom were likely to be study section members for large funding agencies. The most prevalent reason to participate in a review was to give back to the scientific community and the most common reason to decline an invitation to review was lack of time. Interestingly, few suggested that expectation from the funding agency was a motivation to review. Most felt that review participation positively influenced their careers through improving grantsmanship and exposure to new scientific ideas. Of those who reviewed, respondents reported dedicating 2–5% of their total annual work time to grant review and, based on their self-reported maximum review loads, it is estimated they are participating at 56–87% of their capacity, which may have important implications regarding the sustainability of the system. Overall, it is clear that participation in peer review is uneven and in some cases near capacity, and more needs to be done to create new motivations and incentives to increase the future pool of reviewers. (shrink)

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

It is taken as obvious that there is a conflict between objective temporal passage and relativistic physics. The traditional formulation of temporal passage is the movement of a universe-wide set of simultaneous events known as the NOW; the Special Theory of Relativity implies that there is no NOW and therefore no temporal passage. The vast majority of those who accept the B-theory blockworld—the metaphysics of time most friendly to relativistic physics—deny that time passes. I argue that this denial is a (...) mistake. Contrary to overwhelmingly popular opinion, temporal passage does not need a NOW. To show this, I defend a relational understanding of temporal becoming, that I call B-coming, in which an event y B-comes with respect to x iff R xy. Temporal passage is then the difference in what has B-come at one point in a thing’s history with respect to what has B-come at an earlier point in that thing’s history. Appealing to this kind of relation is a strategy that is well-known but has been widely dismissed. This dismissal is premature; I show that the essential elements of temporal passage do not necessarily require a NOW. There can be passage without presentness. (shrink)

Purpose: To determine the relative value that patients place on consent for procedures in the emergency department (ED) and to define a set of procedures that fall in the realm of implied consent. Methods: A questionnaire was administered to a convenience sample 134 of 174 patients who were seen in the ED of a Midwestern teaching hospital. The questionnaire asked how much time they believed was necessary to give consent for various procedures. Procedures ranged from simple (venipuncture) to complex (procedural (...) sedation). Results: Participants valued a simple blood draw at a low mean of 1.02 minutes of extra time and a lumbar puncture at a high mean of 7.78 minutes. Of all participants 52% and 48% noted a time-value of ?0? time on blood draw and intravenous line starts, respectively, indicating that they desire no additional consent for these procedures. Conclusion: Defining a set of ED procedures covered under implied consent will be difficult because many patients value formal consent for even the simplest procedure. (shrink)

Media exposure influences mental health symptomology in response to salient aversive events, like terrorist attacks, but little has been done to explore the impact of news coverage that varies more subtly in affective content. Here, we utilized an existing data set in which participants self-reported physical symptoms, depressive symptoms, and anxiety symptoms, and completed a potentiated startle task assessing their physiological reactivity to aversive stimuli at three time points (waves) over a 9-month period. Using a computational linguistics approach, we then (...) calculated an average ratio of words with positive vs. negative affective connotations for only articles from news sources to which each participant self-reported being exposed over the prior 2 weeks at each wave of data collection. As hypothesized, individuals exposed to news coverage with more negative affective tone over the prior 2 weeks reported significantly greater physical and depressive symptoms, and had significantly greater physiological reactivity to aversive stimuli. (shrink)

As Michael Squire humorously points out, if you are looking for a book dealing with ancient literary accounts on the body or one that simply presents a linear, chronological treatment of the female and male nude in Western art, then this may not be the work for you. If on the other hand you are ready to throw down the gauntlet and challenge the traditional roles that we have assumed about the Greco-Roman nude in antiquity, then the time is ripe (...) to read this book. Squire's The Art of the Body: Antiquity and Its Legacy provides a provocative and refreshing approach for non-specialists and specialists alike to unpack the visual vocabulary associated with both the ancient and modern nude. This book is part of the Oxford University Press' Ancients and Moderns series, the aim of which is "to illustrate that how we think about the past bears a necessary relation to who we are in the present". Does Squire's monograph meet the challenge? The answer is an enthusiastic yes. This stimulating work in five thematic chapters will persuade readers to rethink the visual representations of the body within the history of the Western arts. (shrink)

Employing the National Institute of Mental Health-funded Prevention of Suicide in Primary Care Elderly Collaborative Trial as a case study, we discuss 2 sets of ethical issues: obtaining informed consent for a clinic-based intervention study and using treatment as usual (TAU) as the control condition. We then address these ethical issues in the context of the debate about the quality improvement efforts of health care organizations. Our analysis reveals the tension between ethics and scientific integrity involved with using TAU as (...) a control condition and the difficulty in designing high-quality research in a community-based setting. (shrink)

Tests of economic theory often focus on choice outcomes and find significant individual differences in these outcomes. This variability may mask universal psychological processes that lead to different choices because of differences across cultures in the information people have available when making decisions. On this view, decision making research within and across cultures must focus on the processes underlying choice.

Investors with a pro-social or sustainability agenda increasingly attempt to influence firm managers to adopt socially responsible behavior, either through positive/reward tactics or negative/punishment tactics. This paper considers how investors can use each approach to differentially influence managers to make more CSR investments. The paper uses game theory with an all-pay contest structure to model how a large institutional investor could reward firms for CSR activities by creating a socially responsible investment fund (reward contest) or punish firms via shareholder activism (...) (punishment contest). We identify conditions under which the punishment contest induces a higher level of CSR activity among firms compared to the reward contest. Managers bearing substantial private costs stemming from the activism is one such condition. Spillover effects are seen as the other managers in the economy engage in CSR to avoid being punished by the investor’s activism. This level of engagement is not the case when rewards are used—only those managers with an expectation of being rewarded increase their CSR activity in that scenario. This suggests, for example, that incorporating thresholds or tiers (e.g. gold, silver, and bronze-level winners) can increase the effectiveness of reward contests. Implications for designing both positive and negative CSR inducements are explored. We also identify the ethical dilemmas that relate to such influence attempts. (shrink)

Pickering & Garrod (P&G) suggest that communicators synchronize their processing at a number of linguistic levels. Whereas their explanation suggests that representations are being compared across individuals, there must be some representation of all conversation participants in each participant's head. At the level of the situation model, it is important to maintain separate representations for each participant. At other levels, it seems less crucial to have a separate representation for each participant. This analysis suggests that different mechanisms may synchronize representations (...) at different linguistic levels. (shrink)

Implementation of guidelines regarding breaches of electronic health information requires an anticipatory stance and physician and patient education regarding security and monitoring measures and methods of redress. Adopting a preventive ethics, rather than a crisis management, model may also increase physician awareness of how the information they choose to include and privilege within the health record may expose patients to added harms if not done mindfully.

In contrast to the views put forth by Stein & Glasier, we support the use of inbred strains of rodents in studies of the immunobiology of neural transplants. Inbred strains demonstrate homology of the major histocompatibility complex (MHC). Virtually all experimental work in transplantation immunology is performed using inbred strains, yet very few published studies of immune rejection in intracerebral grafts have used inbred animals.

Different aspects of people's interactions with money are best conceptualized using the drug and tool theories. The key question is when these models of money are most likely to guide behavior. We suggest that the Drug Theory characterizes motivationally active uses of money and that the Tool Theory characterizes behavior in motivationally cool situations. (Published Online April 5 2006).

Employing the National Institute of Mental Health-funded Prevention of Suicide in Primary Care Elderly Collaborative Trial as a case study, we discuss 2 sets of ethical issues: obtaining informed consent for a clinic-based intervention study and using treatment as usual (TAU) as the control condition. We then address these ethical issues in the context of the debate about the quality improvement efforts of health care organizations. Our analysis reveals the tension between ethics and scientific integrity involved with using TAU as (...) a control condition and the difficulty in designing high-quality research in a community-based setting. (shrink)