Stress is increasingly being recognized as one of the main factors that is negatively affecting our health, and therefore there is a need to regulate daily stress and prevent long-term stress. This need seems particularly important for adults with mild intellectual disabilities who have been shown to have more difficulties coping with stress than adults without intellectual disabilities. Hence, the development of music therapy interventions for stress reduction, particularly within populations where needs may be greater, is becoming increasingly important. In (...) order to gain more insight into the practice-based knowledge on how music therapists lower stress levels of their patients with MID during music therapy sessions, we conducted focus group interviews with music therapists working with adults with MID from different countries and clinical institutions in Europe. Results provide an overview of the most-used interventions for stress reduction within and outside of music. Data-analysis resulted in the further specification of therapeutic goals, intervention techniques, the use of musical instruments, and related therapeutic change factors. The main findings indicate that music therapists used little to no receptive interventions for stress reduction, but preferred to use active interventions, which were mainly based on musical improvisation. Results show that three therapy goals for stress relief could be distinguished. The goal of “synchronizing” can be seen as a sub goal because it often precedes working on the other two goals of “tension release” or “direct relaxation,” which can also be seen as two ways of reaching stress reduction in adults with MID through music therapy interventions. Furthermore, the tempo and the dynamics of the music are considered as the most important musical components to reduce stress in adults with MID. Practical implications for stress-reducing music therapy interventions for adults with MID are discussed as well as recommendations for future research. (shrink)

Dynamic body feedback is used in dance movement therapy, with the aim to facilitate emotional expression and a change of emotional state through movement and dance for individuals with psychosocial or psychiatric complaints. It has been demonstrated that moving in a specific way can evoke and regulate related emotions. The current study aimed to investigate the effects of executing a unique set of kinetic movement elements on an individual mover’s experience of happiness. A specific sequence consisting of movement elements that (...) recent studies have related to the feeling of happiness was created and used in a series of conditions. To achieve a more realistic reflection of DMT practice, the study incorporated the interpersonal dimension between the dance movement therapist and the client, and the impact of this interbodily feedback on the emotional state of the client. This quantitative study was conducted in a within-subject design. Five male and 20 female participants participated in three conditions: a solo executed movement sequence, a movement sequence executed with a DMTh who attuned and mirrored the movements, and a solo executed movement sequence not associated with feelings of happiness. Participants were only informed about the movements and not the feelings that may be provoked by these movements. The effects on individuals were measured using the Positive and Negative Affect Schedule and visual analog scales. Results showed that a specific movement sequence based on movement elements associated with happiness executed with a DMTh can significantly enhance the corresponding affective state. An additional finding of this study indicated that facilitating expressed emotion through movement elements that are not associated with happiness can enhance feelings such as empowerment, pride, and determination, which are experienced as part of positive affect. The results show the impact of specific full-body movement elements on the emotional state and the support outcome of DMT on emotion regulation. (shrink)

In this paper we aim to shed light on the dynamics of regional identity construction and deconstruction. We will argue that four forms of identity can be identified that are linked through various processes of change. To that end, we will theoretically conceptualise 'identity' by discussing historical and current scholarly debates on identity in a variety of scientific disciplines. Then, we will argue that the mutual contradiction of the current theories is a paradox if seen from the angle of regional (...) identity construction and deconstruction. Building upon elements from the various theoretical approaches, we propose a heuristic model describing the dynamics of identity construction and deconstruction, which will be explored by means of the example of the Green Heart region, a spatial planning concept in western Holland. (shrink)

This article deals with the question of how ethicists respond to practical moral problems emerging in health care practices. Do they remain distanced, taking on the role of an expert, or do they become engaged with nurses and other participants in practice and jointly develop contextualized insights about good care? A basic assumption of dialogical ethics entails that the definition of good care and what it means to be a good nurse is a collaborative product of ongoing dialogues among various (...) stakeholders engaged in the practice. This article discusses the value of a dialogical approach to ethics by drawing on the work of various nursing scholars. We present a case example concerning the quality of freedom restrictions for intellectually disabled people. Issues for discussion include the role and required competences of the ethicist and dealing with asymmetrical relationships between stakeholders. (shrink)

This paper is one of the four interrelated action agenda papers resulting from the National Summit on Public Health Legal Preparedness convened in June 2007 by the Centers for Disease Control and Prevention and multi-disciplinary partners. Each of the action agenda papers deals with one of the four core elements of public health legal preparedness: laws and legal authorities; competency in using those laws; coordination of law-based public health actions; and information. Options presented in this paper are for consideration by (...) policy makers and practitioners — in all jurisdictions and all relevant sectors and disciplines — with responsibilities for all-hazards emergency preparedness.Advancing and protecting the public's health depends upon the coordination of actions by many, diverse partners. For effective public health preparedness, there must be effective coordination of legal tools and law-based strategies across local, state, tribal, and federal jurisdictions, and also across sectors such as public health, health care, emergency management, education, law enforcement, community design, and academia. (shrink)

This paper is one of the four interrelated action agenda papers resulting from the National Summit on Public Health Legal Preparedness convened in June 2007 by the Centers for Disease Control and Prevention and multi-disciplinary partners. Each of the action agenda papers deals with one of the four core elements of public health legal preparedness: laws and legal authorities; competency in using those laws; coordination of law-based public health actions; and information. Options presented in this paper are for consideration by (...) policy makers and practitioners — in all jurisdictions and all relevant sectors and disciplines — with responsibilities for all-hazards emergency preparedness.Advancing and protecting the public's health depends upon the coordination of actions by many, diverse partners. For effective public health preparedness, there must be effective coordination of legal tools and law-based strategies across local, state, tribal, and federal jurisdictions, and also across sectors such as public health, health care, emergency management, education, law enforcement, community design, and academia. (shrink)

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...) have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)

Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.

Elicitation materials like language portraits are useful to investigate people’s perceptions about the languages that they know. This study uses portraits to analyse the underlying conceptualisations people exhibit when reflecting on their language repertoires. Conceptualisations as manifestations of cultural cognition are the purview of cognitive sociolinguistics. The present study advances portrait methodology as it analyses data from structured language portraits of 105 South African youth as a linguistic corpus from both qualitative and quantitative perspectives. The approach enables the uncovering of (...) (a) prominent underlying conceptualisations of African language(s) and the body, and (b) the differences and similarities of these conceptualisations vis-à-vis previous cognitive (socio)linguistic studies of embodied language experiences. In our analysis, African home languages emerged both as ‘languages of the heart’ linked to cultural identity and as ‘languages of the head’ linked to cognitive strength and control. Moreover, the notion of ‘degrees of proficiency’ or ‘magnitude’ of language knowledge emerged more prominently than in previous studies of embodied language experience. (shrink)

Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research Consortium. The authors then (...) negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death. (shrink)

An international legal agreement governing the global antimicrobial commons would represent the strongest commitment mechanism for achieving collective action on antimicrobial resistance (AMR). Since AMR has important similarities to climate change—both are common pool resource challenges that require massive, long-term political commitments—the first article in this special issue draws lessons from various climate agreements that could be applicable for developing a grand bargain on AMR. We consider the similarities and differences between the Paris Climate Agreement and current governance structures for (...) AMR, and identify the merits and challenges associated with different international forums for developing a long-term international agreement on AMR. To be effective, fair, and feasible, an enduring legal agreement on AMR will require a combination of universal, differentiated, and individualized requirements, nationally determined contributions that are regularly reviewed and ratcheted up in level of ambition, a regular independent scientific stocktake to support evidence informed policymaking, and a concrete global goal to rally support. (shrink)

Despite enthusiastic claims around the benefits of corporate volunteering for the workplace and its widespread implementation, the impact of such programs for beneficiaries and non-profit organizations remains uncertain, particularly when employees’ participation is one-off. Previous research suggests that the benefits of CV for employees, businesses, and society are more likely to occur if employees internalize a volunteer identity—that is, if being a volunteer becomes a part of their self. This leads them to sustain their participation in CV over time, maximizing (...) CV’s positive effects on all stakeholders. This study explores the factors explaining why employees internalize a volunteer identity in a corporate context. We do so by empirically testing Grant’s :589-615, 2012) volunteer work design theoretical model with a sample of 619 employees involved in CV programs, and by comparing its relevance with an alternative, extended model relying on insights from self-determination theory. Whereas we find only partial and weak empirical support for the VWD model, our SDT-extended model is supported empirically. These results show that the quality of motivation that employees experience while volunteering plays a more important role than repeated participation, as it illuminates the process of how factors such as the quality of the projects, organizational support for CV, as well as the causes targeted affect the internalization of a volunteer identity. In particular, we show that employees are more likely to internalize a volunteer identity if they can choose what cause to engage for and if they feel that the projects they participate in are meaningful. Surprisingly, we also show that a prestigious cause as well as recognition and managerial support foster a controlled form of motivation for employees, which are then unlikely to internalize a volunteer identity. In doing so, we contribute to a better understanding of how CV can have lasting benefits for both business and society, and provide business leaders with actionable insights about how to design impactful CV programs. (shrink)

Antimicrobial resistance (AMR) is an urgent threat to global public health and development. Mitigating this threat requires substantial short-term action on key AMR priorities. While international legal agreements are the strongest mechanism for ensuring collaboration among countries, negotiating new international agreements can be a slow process. In the second article in this special issue, we consider whether harnessing existing international legal agreements offers an opportunity to increase collective action on AMR goals in the short-term. We highlight ten AMR priorities and (...) several strategies for achieving these goals using existing “legal hooks” that draw on elements of international environmental, trade and health laws governing related matters that could be used as they exist or revised to include AMR. We also consider the institutional mandates of international authorities to highlight areas where additional steps could be taken on AMR without constitutional changes. Overall, we identify 37 possible mechanisms to strengthen AMR governance using the International Health Regulations, the Agreement on the Application of Sanitary and Phytosanitary Measures, the Agreement on Trade-Related Aspects of Intellectual Property Rights, the Agreement on Technical Barriers to Trade, the International Convention on the Harmonized Commodity Description and Coding System, and the Basel, Rotterdam, and Stockholm conventions. Although we identify many shorter-term opportunities for addressing AMR using existing legal hooks, none of these options are capable of comprehensively addressing all global governance challenges related to AMR, such that they should be pursued simultaneously with longer-term approaches including a dedicated international legal agreement on AMR. (shrink)

BackgroundInaccurate, false or incomplete research publications may mislead readers including researchers and decision-makers. It is therefore important that such problems are identified and rectified promptly. This usually involves collaboration between the research institutions and academic journals involved, but these interactions can be problematic.MethodsThese recommendations were developed following discussions at World Conferences on Research Integrity in 2013 and 2017, and at a specially convened 3-day workshop in 2016 involving participants from 7 countries with expertise in publication ethics and research integrity. The (...) recommendations aim to address issues surrounding cooperation and liaison between institutions and journals about possible and actual problems with the integrity of reported research arising before and after publication.ResultsThe main recommendations are that research institutions should: develop mechanisms for assessing the integrity of reported research that are distinct from processes to determine whether individual researchers have committed misconduct;release relevant sections of reports of research integrity or misconduct investigations to all journals that have published research that was investigated;take responsibility for research performed under their auspices regardless of whether the researcher still works at that institution or how long ago the work was done;work with funders to ensure essential research data is retained for at least 10 years.Journals should: respond to institutions about research integrity cases in a timely manner;have criteria for determining whether, and what type of, information and evidence relating to the integrity of research reports should be passed on to institutions;pass on research integrity concerns to institutions, regardless of whether they intend to accept the work for publication;retain peer review records for at least 10 years to enable the investigation of peer review manipulation or other inappropriate behaviour by authors or reviewers.ConclusionsVarious difficulties can prevent effective cooperation between academic journals and research institutions about research integrity concerns and hinder the correction of the research record if problems are discovered. While the issues and their solutions may vary across different settings, we encourage research institutions, journals and funders to consider how they might improve future collaboration and cooperation on research integrity cases. (shrink)

A brain-computer interface technology that can decode the neural signals associated with attempted but unarticulated speech could offer a future efficient means of communication for people with severe motor impairments. Recent demonstrations have validated this approach. Here we assume that it will be possible in future to decode imagined (i.e., attempted but unarticulated) speech in people with severe motor impairments, and we consider the characteristics that could maximize the social utility of a BCI for communication. As a social interaction, communication (...) involves the needs and goals of both speaker and listener, particularly in contexts that have significant potential consequences. We explore three high-consequence legal situations in which neurally-decoded speech could have implications:Testimony, where decoded speech is used as evidence;Consent and Capacity, where it may be used as a means of agency and participation such as consent to medical treatment; andHarm, where such communications may be networked or may cause harm to others. We then illustrate how design choices might impact the social and legal acceptability of these technologies. (shrink)

Although attentional bias is considered a key characteristic of anxiety problems, the psychometric properties of most AB measures are either problematic or unknown. We conducted two experiment...

Within the research community, it is generally accepted that consent processes for research should be culturally appropriate and tailored to the context, yet researchers continue to grapple with what valid consent means within specific stakeholder groups. In this study, we explored the consent practices and attitudes regarding essential information required for the consent process within hospital-based trial communities from four referral hospitals in Vietnam. We collected surveys from and conducted semi-structured interviews with study physicians, study nurses, ethics committee members, and (...) study participants and family members regarding their experiences of participating in research, their perspectives toward research, and their views about various elements of the consent process. In our findings, we describe three interrelated themes related to the consent process: words and regulation; reimbursement, suspicions, and joining; and responsibilities. In general, stakeholders had highly varied perspectives of nghiên cứu and researchers used varying levels of detail regarding all aspects of the study in the consent process to build trust with and/or promote potential research participants’ choices about taking part in research. Findings additionally highlight how researchers felt that offering financial reimbursements in a hospital setting, where payment for services was routine, would be unfamiliar to participants and could raise suspicions about the research. Participants, however, focused their discussions on reimbursement or alternative reasons for joining the study, such as health related benefits or altruism. Finally, participants often relied on their physician to help them decide about joining a study or not. Further research is needed to understand how researchers and participants make sense of and practice consent, and how that impacts participants’ decision-making about research participation. To promote valid consent within this context, it is important to engage with hospital-based trial communities as a whole. The data from this study will inform future research on consent, guide the revisions of consent related policies within our research sites and point to several larger issues surrounding researcher-participant expectations, communication, and trust. (shrink)

Background: Bioethics consultations are conducted in varied settings, including hospitals, universities, and other research institutions, but there is sparse information about bioethics consultations conducted in corporate settings such as pharmaceutical companies. The purpose of this article is to describe a bioethics consultation service at a pharmaceutical company, to report characteristics of consultations completed by the service over a 6-year period, and to share results of a consultation feedback survey. Methods: Data on the descriptive characteristics of bioethics consultations were collected from (...) 2008 to 2013 and analyzed in Excel 2007. Categorical data were analyzed via the pivot table function, and time-based variables were analyzed via formulas. The feedback survey was administered to consultation requesters from 2009 to 2012 and also analyzed in Excel 2007. Results: Over the 6-year period, 189 bioethics consultations were conducted. The number of consultations increased from five per year in 2008 to approximately one per week in 2013. During this time, the format of the consultation service was changed from a committee-only approach to a tiered approach (tailored to the needs of the case). The five most frequent topics were informed consent, early termination of a clinical trial, benefits and risks, human biological samples, and patient rights. The feedback survey results suggest the consultation service is well regarded overall and viewed as approachable, helpful, and responsive. Conclusions: Pharmaceutical bioethics consultation is a unique category of bioethics consultation that primarily focuses on pharmaceutical research and development but also touches on aspects of clinical ethics, business ethics, and organizational ethics. Results indicate there is a demand for a tiered bioethics consultation service within this pharmaceutical company and that advice was valued. This company's experience indicates that a bioethics consultation service raises awareness about bioethics, empowers employees to raise bioethical concerns, and helps them reason through challenging issues. (shrink)

BackgroundThe informed consent process in clinical trials has been extensively studied to inform the development processes which protect research participants and encourage their autonomy. However, ensuring a meaningful informed consent process is still of great concern in many research settings due to its complexity in practice and interwined socio-cultural factors.ObjectivesThis study explored the practices and meaning of the informed consent process in two clinial trials conducted by Oxford University Clinical Research Unit in collaboration with the Hospital for Tropical Diseases in (...) Ho Chi Minh City, Vietnam.MethodsWe used multiple data collection methods including direct observervations, in-depth interviews with study physicians and trial participants, review of informed consent documents from 2009 to 2018, and participant observation with patients’ family members. We recruited seven physicians and twenty-five trial participants into the study, of whom five physicians and thirteen trial participants completed in-depth interviews, and we held twenty-two direct observation sessions.ResultsWe use the concept “fragmented understanding” to describe the nuances of understanding about the consent process and unpack underlying reasons for differing understandings.ConclusionsOur findings show how practices of informed consent and different understanding of the trial information are shaped by trial participants’ characteristics and the socio-cultural context in which the trials take place. (shrink)

Ensuring that life-saving antimicrobials remain available as effective treatment options in the face of rapidly rising levels of antimicrobial resistance will require a massive and coordinated global effort. Setting a collective direction for progress is the first step towards aligning global efforts on AMR. This process would be greatly accelerated by adopting a unifying global target — a well-defined global target that unites all countries and sectors. The proposed pandemic instrument — with its focus on prevention, preparedness and response — (...) represents an ideal opportunity to develop and adopt a unifying global target that catalyzes global action on AMR. We propose three key characteristics of a unifying global target for AMR that — if embedded within the pandemic preparedness instrument — could rally public support, funding, and political commitment commensurate with the scale of the AMR challenge. (shrink)

In this paper we aim to shed light on the dynamics of regional identity construction and deconstruction. We will argue that four forms of identity can be identified that are linked through various processes of change. To that end, we will theoretically conceptualise 'identity' by discussing historical and current scholarly debates on identity in a variety of scientific disciplines. Then, we will argue that the mutual contradiction of the current theories is a paradox if seen from the angle of regional (...) identity construction and deconstruction. Building upon elements from the various theoretical approaches, we propose a heuristic model describing the dynamics of identity construction and deconstruction, which will be explored by means of the example of the Green Heart region, a spatial planning concept in western Holland. (shrink)

In this paper we aim to shed light on the dynamics of regional identity construction and deconstruction. We will argue that four forms of identity can be identified that are linked through various processes of change. To that end, we will theoretically conceptualise 'identity' by discussing historical and current scholarly debates on identity in a variety of scientific disciplines. Then, we will argue that the mutual contradiction of the current theories is a paradox if seen from the angle of regional (...) identity construction and deconstruction. Building upon elements from the various theoretical approaches, we propose a heuristic model describing the dynamics of identity construction and deconstruction, which will be explored by means of the example of the Green Heart region, a spatial planning concept in western Holland. (shrink)

In the wake of COVID-19, the World Health Organization established an Intergovernmental Negotiating Body to negotiate a new instrument for pandemic prevention, preparedness, and response. This special issue of the Journal of Law, Medicine & Ethics brings together multidisciplinary scholarship to address the question of whether antimicrobial resistance should be included in this new instrument. Drawing from disciplines including law, anthropology, history, public health, public policy, economics, and veterinary medicine, this special issue explores the inclusion of AMR within the Pandemic (...) Instrument from three perspectives: first, through the lens of global AMR governance, second, from the perspective of technical governance challenges and opportunities affecting the global ability to address AMR and future pandemics, and third, from the perspective of pandemic instrument mechanisms for strengthening global AMR governance. Each paper makes a concrete recommendation with respect to the importance of including AMR within the scope of the pandemic instrument. (shrink)

Prenatal expectations about what children will be like after birth may provide a context for how parents perceive their infant's actual temperament. We examined how these expectations and perceptions are associated and together predict early parenting behavior, with parenting behavior in turn predicting changes in temperament. Reports of 125 families about their expectations of their unborn child's temperament, their infant's temperament at 4 and 12 months post-partum, and their hostile, responsive, warm, and overprotective parenting were included. We also included data (...) from an independent sample of 168 mothers, with the same measures, except that mothers reported on Big Five personality traits at T1. Results indicated that in both samples, parents' expectations were positively associated with perceptions of infant temperament. Prenatal expectations and newborn temperament independently predicted parenting behavior, and maternal and paternal parenting in turn predicted infant temperament at T3, controlling for infant temperament at T2. Although overall findings indicated associations between a more difficult temperament and more negative/less positive parenting, significant combinations of specific traits and parenting behaviors were sample-specific—indicating that more research is necessary to draw a conclusion about specific links. Both maternal and paternal expectations about their unborn child's temperament appear to carry over into the postpartum reality and provide a context for shaping early interactions between caregivers and their children, which may further shape the developing temperament of the child. (shrink)

This research focused on the potential for Christ-following leaders to develop a theological and missiological posture in response to the current volatile, uncertain, complex and ambiguous world context. This research looks at how the attitudes and actions of the corporate world have influenced those of Christian organisations and Christian leadership. The corporate world primarily focuses on strategies for overcoming the challenges of the VUCA environment, but this research explores how Christ-following leaders might benefit from looking more deeply at what VUCA (...) represents, rather than merely accepting and reacting to it. The research used a literature review to develop the groundwork for an increased understanding of how God and VUCA relate and how Christ followers can develop a perspective in keeping with an understanding of God’s mission, their calling and the VUCA world mindset. Although some research has been done regarding spirituality as part of a response to the VUCA world, it has often focused on the outward expressions with little attention to the Christ follower’s source of spiritual life, the trinitarian God. This research integrates recognition of the character of God, evaluation of VUCA realities and rhetoric, and the responsibilities and opportunities of leaders who desire to participate in God’s mission. In this process, the research explores strategy metaphors, missional thinking and leadership implications.Contribution: This research encourages greater theological and missiological exploration of the Christian leader’s posture and response to the VUCA world mindset. The research engages with corporate thinking regarding strategy and the implications of VUCA and with theological and missiological thinking regarding God’s role, the leader’s role and the nature of current contexts, both local and global. (shrink)