Dystonia is a movement disorder that can have a debilitating impact on motor functions and quality of life. There are 250,000 cases in the United States, most with childhood onset. Due to the limited effectiveness and side effects of available treatments, pediatric deep brain stimulation has emerged as an intervention for refractory dystonia. However, there is limited clinical and neuroethics research in this area of clinical practice. This paper examines whether it is ethically justified to offer pDBS to children with (...) refractory dystonia. Given the favorable risk-benefit profile, it is concluded that offering pDBS is ethically justified for certain etiologies of dystonia, but it is less clear for others. In addition, various ethical and policy concerns are discussed, which need to be addressed to optimize the practice of offering pDBS for dystonia. Strategies are proposed to help address these concerns as pDBS continues to expand. (shrink)

Harcourt argues that in clinical contexts, children and young people with mental health illness can experience epistemic, specifically testimonial, injustice when their perspectives are unjustifiably discounted by health service providers.1 Our goal in this commentary was to illustrate how caregivers, a critical component of CYP treatment triad, can also engage in testimonial injustice towards CYP patients. Testimonial injustice occurs when one suffers a credibility deficit and that credibility deficit is based on prejudice.2 Harcourt expands Fricker’s account of testimonial injustice by (...) arguing that for CYPs, the credibility deficits attributed to them by clinicians, for example, may result from epistemic arrogance in that CYPs are viewed as having unreliable knowledge about their condition. Harcourt writes: ‘Being a CYP is treated as a heuristic for epistemic unreliability across a wide range of domains’, including clinical settings. Harcourt’s expansion of Fricker’s account thus includes epistemic arrogance as an alternative necessary condition, in addition to prejudice, to apply the concept of testimonial injustice. We think Harcourt’s argument can also be extended to caregivers, who are central to the CYP treatment triad. We illustrate how this may be the case by drawing from research we conducted to understand the perspectives of clinicians and prospective families, both caregivers and paediatric patients with obsessive–compulsive disorder about the possibility of …. (shrink)

Volume 20, Issue 7, July 2020, Page 207-209.

The ongoing debate within neuroethics concerning the degree to which neuromodulation such as deep brain stimulation (DBS) changes the personality, identity, and agency (PIA) of patients has paid relatively little attention to the perspectives of prospective patients. Even less attention has been given to pediatric populations. To understand patients’ views about identity changes due to DBS in obsessive-compulsive disorder (OCD), the authors conducted and analyzed semistructured interviews with adolescent patients with OCD and their parents/caregivers. Patients were asked about projected impacts (...) to PIA generally due to DBS. All patient respondents and half of caregivers reported that DBS would impact patient self-identity in significant ways. For example, many patients expressed how DBS could positively impact identity by allowing them to explore their identities free from OCD. Others voiced concerns that DBS-related resolution of OCD might negatively impact patient agency and authenticity. Half of patients expressed that DBS may positively facilitate social access through relieving symptoms, while half indicated that DBS could increase social stigma. These views give insights into how to approach decision-making and informed consent if DBS for OCD becomes available for adolescents. They also offer insights into adolescent experiences of disability identity and “normalcy” in the context of OCD. (shrink)

This book is the result of intensive and continued discussions about the social role of language and its conceptualisations in societies other than Northern (European-American) ones. Language as a means of expressing as well as evoking both interiority and community has been in the focus of these discussions, led among linguists, anthropologists, and Egyptologists, and leading to a collection of essays that provide studies that transcend previously considered approaches. Its contributions are in particular interested in understanding how the attitude of (...) the individual towards societal processes and strategies of norming is negotiated emotionally, and how individual interests and attitudes can be articulated. Discourses on public spaces are in the focus, in order to analyse those strategies that are employed to articulate dissent (for example, in the sense of face-threatening acts). This raises a number of questions on the spatial and public situatedness of emotions and language: How is the public space dealt with and reflected in language as property, heritage, and as a part of ascribed identities? Which role do emotions play in this space? How is emotion employed there as part of place making in relation to identity constructions? What is the connection between emotion, performance and emblematic spaces and places? Which opportunities of the violation of norms and transgression do such public spaces offer to actors and speakers? These questions intend to address the communicative representation of core cultural processes and concepts. (shrink)

Background:Attention to ethical leadership in nursing has diminished over the past several decades.Objectives:The aim of our study was to investigate how frontline nurses and formal nurse leaders envision ethical nursing leadership.Research design:Meta-ethnography was used to guide our analysis and synthesis of four studies that explored the notion of ethical nursing leadership.Participants and research context:These four original studies were conducted from 1999-2008 in Canada with 601 participants.Ethical considerations:Ethical approval from the original studies covered future analysis.Findings:Using the analytic strategy of lines-of-argument, we (...) found that 1) ethical nursing leadership must be responsive to practitioners and to the contextual system in which they and formal nurse leaders work, and 2) ethical nursing leadership requires receiving and providing support to increase the capacity to practice and discuss ethics in the day-to-day.Discussion and conclusion:Formal nurse leaders play a critical, yet often neglected role, in providing ethical leadership and supporting ethical nursing practice at the point of patient care. (shrink)

BackgroundPublic health guidelines have recommended that elective medical procedures, including deep brain stimulation surgery for Parkinson’s disease, should not be scheduled during the coronavirus pandemic to prevent further virus spread and overload on health care systems. However, delaying DBS surgery for PD may not be in the best interest of individual patients and is not called for in regions where virus spread is under control and inpatient facilities are not overloaded.MethodsWe administered a newly developed phone questionnaire to 20 consecutive patients (...) with PD who received DBS surgery in Ruijin Hospital in Shanghai during the COVID-19 pandemic. The questionnaire was designed to gather the patients’ experiences and perceptions on the impact of COVID-19 on their everyday activities and access to medical care.ResultsMost of the patients felt confident about the preventive measures taken by the government and hospitals, and they have changed their daily living activities accordingly. Moreover, a large majority of patients felt confident obtaining access to regular and COVID-19-related health care services if needed. Routine clinical referral, sense of security in the hospital during the outbreak, and poor control of PD symptoms were the three main reasons given by patients for seeking DBS surgery during the COVID-19 pandemic.ConclusionThe COVID-19 pandemic has considerably impacted medical care and patients’ lives but elective procedures, such as DBS surgery for PD, do not need to be rescheduled when the health care system is not overloaded and adequate public health regulations are in place. (shrink)

Moral distress is a phenomenon of increasing concern in nursing practice, education and research. Previous research has suggested that moral distress is associated with perceptions of ethical climate, which has implications for nursing practice and patient outcomes. In this study, a randomly selected sample of registered nurses was surveyed using Corley’s Moral Distress Scale and Olson’s Hospital Ethical Climate Survey (HECS). The registered nurses reported moderate levels of moral distress intensity. Moral distress intensity and frequency were found to be inversely (...) correlated with perceptions of ethical climate. Each of the HECS factors (peers, patients, managers, hospitals and physicians) was found to be significantly correlated with moral distress. Based on these findings, we highlight insights for practice and future research that are needed to enhance the development of strategies aimed at improving the ethical climate of nurses’ workplaces for the benefit of both nurses and patients. (shrink)

The current study was a cross-sectional research and aimed to investigate the factor structure, internal consistency, and validities of the Persian version of the Teasing Questionnaire-Revised. Forward and backward translations of the TQ-R were performed; face and content validities were determined based on comments by a sample of psychology students and specialists. Using the cluster sampling method, 290 participants were recruited, and 201 valid data were analyzed. The factor structure was assessed by confirmatory and exploratory factor analysis. The result of (...) the confirmatory factor analysis did not confirm the proposed three, four, and five-factor models. EFA revealed four factors with 23 items, explaining 52.03% of the total variance. The internal consistency of the Persian version of Teasing Questionnaire 23 was in the excellent range, and its expected associations with external correlates supported the measure’s convergent validity. The findings indicated that the Persian version of the TQ-R has sound psychometric properties and can be used as a valid and reliable tool in research and clinical outcomes. (shrink)

Every language has a way of talking about seeing, hearing, smelling, tasting and touching. This can be done through lexical means, and through grammatical evidentials. The studies presented here focus on the experssions of perception and cognition in languages of Africa, Oceania, and South America.

While the intellectual challenge of digital phenotyping (DP) has evolved from data collection to more complex data analysis (Onnela 2021), core ethical considerations remain centered on patient pri...

Although the need to theorize ethics within the complexities of nursing practice has been identified within the nursing literature, to date the link between ethics epistemology and specific nursing actions has received limited attention. In particular, little exploration has been carried out to examine how nurses ‘know’ what is ethical and the knowledge they draw upon to inform their nursing actions within the complexities of their everyday practice. This study describes a participatory inquiry project that focused on developing and articulating (...) an epistemology of ethics while in the midst of everyday nursing work. Epistemological and methodological insights are discussed in light of the challenges nurses face in contemporary healthcare contexts. (shrink)

IntroductionDeep brain stimulation (DBS) is utilized to treat pediatric refractory dystonia and its use in pediatric patients is expected to grow. One important question concerns the impact of hope and unrealistic optimism on decision-making, especially in “last resort” intervention scenarios such as DBS for refractory conditions.ObjectiveThis study examined stakeholder experiences and perspectives on hope and unrealistic optimism in the context of decision-making about DBS for childhood dystonia and provides insights for clinicians seeking to implement effective communication strategies.Materials and MethodsSemi-structured interviews (...) with clinicians (n = 29) and caregivers (n = 44) were conducted, transcribed, and coded.ResultsUsing thematic content analysis, four major themes from clinician interviews and five major themes from caregiver interviews related to hopes and expectations were identified. Clinicians expressed concerns about caregiver false hopes (86%, 25/29) and desperation (68.9%, 20/29) in light of DBS being a last resort. As a result, 68.9% of clinicians (20/29) expressed that they intentionally tried to lower caregiver expectations about DBS outcomes. Clinicians also expressed concern that, on the flip side, unrealistic pessimism drives away some patients who might otherwise benefit from DBS (34.5%, 10/29). Caregivers viewed DBS as the last option that they had to try (61.3%, 27/44), and 73% of caregivers (32/44) viewed themselves as having high hopes but reasonable expectations. Fewer than half (43%, 19/44) expressed that they struggled setting outcome expectations due to the uncertainty of DBS, and 50% of post-DBS caregivers (14/28) expressed some negative feelings post treatment due to unmet expectations. 43% of caregivers (19/44) had experiences with clinicians who tried to set low expectations about the potential benefits of DBS.ConclusionThoughtful clinician-stakeholder discussion is needed to ensure realistic outcome expectations. (shrink)

Research on moral distress has paid limited attention to nurses’ responses and actions. In a survey of nurses’ perceptions of moral distress and ethical climate, 292 nurses answered three open-ended questions about situations that they considered morally distressing. Participants identified a range of situations as morally distressing, including witnessing unnecessary suffering, being forced to provide care that compromised values, and negative judgments about patients. They linked these situations to contextual constraints such as workload and described responses, including feeling incompetent and (...) distancing themselves from patients. Participants described considerable effort to effect change, calling into question the utility of defining moral distress as an “inability to act due to institutional constraints” or a “failure to pursue a right course of action.” Various understandings of moral distress operated, and action was integral to their responses. The findings suggest further conceptual work on moral distress and effort to support system-level change. (shrink)

Although ethical leadership by formal nurse leaders is critical to enhancing ethical health-care practice, research has shown that many nurses feel unsupported by their leaders. In this article, we consider the limited attention directed toward ethical leadership of formal nurse leaders and how our own research on ethical nurse leadership compares to other research in this field. In searching Nursing Ethics since its inception 20 years ago, we found only a dozen articles that directly addressed this topic. We then reviewed (...) nurses’ professional codes of ethics in Canada and found significant retractions of ethical guidelines for formal nurse leaders’ ethical responsibilities over the past decade. We began to seek explanations of why this is so and offer some recommendations for the study and enhancement of ethics for formal nurse leadership. (shrink)

Physicians and nurses need to sustain their unique strengths and work in true collaboration, recognizing their interdependence and the complementarity of their knowledge, skills and perspectives, as well as their common moral commitments. In this article, challenges often faced by both nurses and physicians in working collaboratively are explored with a focus on the ways in which each profession's preparation for practice has differed over time, including shifts in knowledge development and codes of ethics guiding their practice. A call for (...) envisioning their practice as shared moral work as well as practical strategies to begin that work are offered as a basis for reflection towards enhanced nurse-physician relationships. (shrink)

There is increasing emphasis on the need for collaboration between practice and academic leaders in health care research. However, many problems can arise owing to differences between academic and clinical goals and timelines. In order for research to move forward it is important to name and address these issues early in a project. In this article we use an example of a participatory action research study of ethical practice in nursing to highlight some of the issues that are not frequently (...) discussed and we identify the impact of things not-named. Further, we offer our insights to others who wish to be partners in research between academic and practice settings. These findings have wide implications for ameliorating misunderstandings that may develop between nurse leaders in light of collaborative research, as well as for participatory action research. (shrink)

Hospital ethics committees must be knowledgeable if they are to perform consultations, advise administrators on policy, or offer educational programs. Because the membership of the committee is interdisciplinary, with most drawn from the healthcare professions, the individuals who join cannot be expected to bring knowledge of bioethies with them. Therefore, a new committee must spend time developing expertise before it can appropriately serve the hospital community. Although the need for committee self-education is generally recognized, it is seldom discussed in any (...) detail. When discussed at all, expertise in bioethies is usually described as composed of a familiarity with an identifiable body of knowledge and mastery over techniques of moral reasoning. It is assumed that a committee can develop this expertise early in its life through a short course of study. (shrink)

BackgroundDeep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies hav...

Moral distress is a concept used to date in clinical literature to describe the experience of staff in circumstances in which they are prevented from delivering the kind of bedside care they believe is expected of them, professionally and ethically. Our research objective was to determine if this concept has relevance in terms of key health care managerial functions, such as priority setting and resource allocation. We conducted interviews and focus groups with mid- and senior-level managers in two British Columbia (...) (Canada) health authorities. Transcripts were analyzed qualitatively using constant comparison to identify key themes related to moral distress. Both mid- and senior-level managers appear to experience moral distress, with both similarities and differences in how their experiences manifest. Several examples of this concept were identified including the obligation to communicate or ‘sell’ organizational decisions or policies with which a manager personally may disagree and situations where scarce resources compel managers to place staff in situations where they meet with predictable and potentially avoidable risks. Given that moral distress appears to be a relevant issue for at least some health care managers, further research is warranted into its exact nature, prevalence, and possible organizational and personal responses. (shrink)

This chapter contains sections titled: Introduction Tracing a History of Nursing Ethics The Sociopolitical Context of Nursing and Nursing Ethics The Renewal of Ethics in Nursing: The Insufficiency of Bioethics Desired Futures Nursing Leadership in Practice and Policy through Attention Ethics Summary References.

In this paper, we bring together research on complex problem solving with that on motivational psychology about goal setting. Complex problems require motivational effort because of their inherent difficulties. Goal Setting Theory has shown with simple tasks that high, specific performance goals lead to better performance outcome than do-your-best goals. However, in complex tasks, learning goals have proven more effective than performance goals. Based on the Zurich Resource Model, so-called motto-goals should activate a person’s resources through positive affect. It was (...) found that motto-goals are effective with unpleasant duties. Therefore, we tested the hypothesis that motto-goals outperform learning and performance goals in the case of complex problems. A total of N = 123 subject participated in the experiment. In dependence of their goal condition, subjects developed a personal motto, learning, or performance goal. This goal was adapted for the computer-simulated complex scenario Tailorshop, where subjects worked as managers in a small fictional company. Other than expected, there was no main effect of goal condition for the management performance. An unexpected gender effect revealed better performance for men than women, pointing to a potential stereotype threat. As hypothesized, motto goals led to higher positive and lower negative affect than the other two goal types. Even though positive affect decreased and negative affect increased in all three groups during Tailorshop completion, participants with motto goals reported the lowest rates of negative affect. Exploratory analyses investigated the role of affect in complex problem solving via mediational analyses and the influence of goal type on perceived goal attainment. (shrink)

In 1942 Robert K. Merton tried to demonstrate the structure of the normative system of science by specifying the norms that characterized it. The norms were assigned the abbreviation CUDOs: Communism, Universalism, Disinterestedness, and Organized skepticism. Using the results of an on-line survey of climate scientists concerning the norms of science, this paper explores the climate scientists’ subscription to these norms. The data suggests that while Merton’s CUDOs remain the overall guiding moral principles, they are not fully endorsed or present (...) in the conduct of climate scientists: there is a tendency to withhold results until publication, there is the intention of maintaining property rights, there is external influence defining research and the tendency to assign the significance of authored work according to the status of the author rather than content of the paper. These are contrary to the norms of science as proposed by Robert K. Merton. (shrink)

Sister (Sr.) Marie Simone Roach, of the Sisters of St. Martha of Antigonish, Nova Scotia, died at the Motherhouse on 2 July 2016 at the age of 93, leaving behind a rich legacy of theoretical and practical work in the areas of care, caring and nursing ethics. She was a humble soul whose deep and scholarly thinking thrust her onto the global nursing stage where she will forever be tied to a central concept in nursing, caring, through her Six Cs (...) of Caring model. In Canada, she was the lead architect of the Canadian Nurses Association's first code of ethics, and her influence on revisions to it is still profound more than 35 years later. In this paper, four global scholars in nursing and ethics are invited to reflect on Sr. Simone's contribution to nursing and health‐care, and we link her work to nursing and health‐care going forward. (shrink)

Moral distress in health care has been identified as a growing concern and a focus of research in nursing and health care for almost three decades. Researchers and theorists have argued that moral distress has both short and long-term consequences. Moral distress has implications for satisfaction, recruitment and retention of health care providers and implications for the delivery of safe and competent quality patient care. In over a decade of research on ethical practice, registered nurses and other health care practitioners (...) have repeatedly identified moral distress as a concern and called for action. However, research and action on moral distress has been constrained by lack of conceptual clarity and theoretical confusion as to the meaning and underpinnings of moral distress. To further examine these issues and foster action on moral distress, three members of the University of Victoria/University of British Columbia (UVIC/UVIC) nursing ethics research team initiated the development and delivery of a multi-faceted and interdisciplinary symposium on Moral Distress with international experts, researchers, and practitioners. The goal of the symposium was to develop an agenda for action on moral distress in health care. We sought to develop a plan of action that would encompass recommendations for education, practice, research and policy. The papers in this special issue of HEC Forum arose from that symposium. In this first paper, we provide an introduction to moral distress; make explicit some of the challenges associated with theoretical and conceptual constructions of moral distress; and discuss the barriers to the development of research, education, and policy that could, if addressed, foster action on moral distress in health care practice. The following three papers were written by key international experts on moral distress, who explore in-depth the issues in three arenas: education, practice, research. In the fifth and last paper in the series, we highlight key insights from the symposium and the papers in the series, propose to redefine moral distress, and outline directions for an agenda for action on moral distress in health care. (shrink)

In the previous four papers in this series, individual versus structural or contextual factors have informed various understandings of moral distress. In this final paper, we summarize some of the key tensions raised in previous papers and use these tensions as springboards to identify directions for action among practitioners, educators, researchers, policymakers and others. In particular, we recognize the need to more explicitly politicize the concept of moral distress in order to understand how such distress arises from competing values within (...) power dynamics across multiple interrelated contexts from interpersonal to international. We propose that the same socio-political values that tend to individualize and blame people for poor health without regard for social conditions in which health inequities proliferate, hold responsible, individualize and even blame health care providers for the problem of moral distress. Grounded in a critical theoretical perspective of context, definitions of moral distress are re-examined and refined. Finally, recommendations for action that emerge from a re-conceptualized understanding of moral distress are provided. (shrink)

Against politicization of science Content Type Journal Article DOI 10.1007/s10202-010-0085-3 Authors Hans von Storch, Institute for Coastal Research, GKSS Research Center, Geesthacht, Germany Dennis Bray, Institute for Coastal Research, GKSS Research Center, Geesthacht, Germany Journal Poiesis & Praxis: International Journal of Technology Assessment and Ethics of Science Online ISSN 1615-6617 Print ISSN 1615-6609 Journal Volume Volume 7 Journal Issue Volume 7, Number 3.

Open peer commentary on the article “On Climate Change Research, the Crisis of Science and Second-order Science” by Philipp Aufenvenne, Heike Egner & Kirsten von Elverfeldt. Upshot: I discuss the concepts of detection and attribution as they are used in scientific discussions about the cause of global warming.