This book is a guide to understanding and applying the essential, heretofore elusive notion of context in language study and pedagogy: Éva Illés offers a new, critical, systematic theoretical framework, then applies that framework to practical interactions and issues in communicative language teaching rooted in English as a Lingua Franca. By linking theory and practice for research and teaching around the world, this book brings a new awareness of how context can be conceptualized and related to language pedagogy to advanced (...) students, teachers, teacher educators, and researchers of language teaching, applied linguistics, and pragmatics. (shrink)

Deep brain stimulation (DBS) represents a promising new frontier in medicine and neuroscience for managing disorders of mental health that represent an enormous burden of disease on our societies. The caution and significant restraint of leaders in the evolution of DBS today stand in sharp and refreshing contrast to previous episodes in history. In embracing the anticipatory and pragmatic problem-solving approach of neuroethics to clinical neuroscience, four significant paradoxes for DBS today come to the fore: caution and innovation, capacity and (...) allocation of resources, notions of wellness and disease, and the high-stakes/high-benefit imperative of communicating about science. Tackling these paradoxes is the focus of this article. (shrink)

The paucity of existing baseline data for understanding neurologic health and the effects of injury on people from Indigenous populations is causally related to the limited representation of communities in neuroimaging research to date. In this paper, we explore ways to change this trend in the context of portable MRI, where portability has opened up imaging to communities that have been neglected or inaccessible in the past. We discuss pathways to engage local leadership, foster the participation of communities for this (...) unprecedented opportunity, and empower field-based researchers to bring the holistic worldview embraced by Indigenous communities to neuroimaging research. (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)

There is substantial literature on fetal alcohol spectrum disorder research involving Aboriginal children, but little related literature on other common neurodevelopmental conditions such as autism spectrum disorder or cerebral palsy for this population. As part of our work in cross-cultural neuroethics, we examined this phenomenon as a case study in Canada. We conducted semi-structured interviews with health researchers working on the frontline with First Nation communities to obtain perspectives about: reasons for the lack of ASD and CP research within the (...) Aboriginal context, the potential ethical and social implications of this disparity, and recommendations for change. Participants reported that the major barriers to engage in ASD or CP research are under-reporting and under-diagnosis of these conditions in Aboriginal communities, difficulties in establishing trust between community members and researchers, challenges in accessing children living under the care of child welfare services, and lack of support from universities and funding agencies to encourage community partnerships. They further perceived threats to justice as the population is denied the benefits of ASD and CP research, and stigma related to the possible over-representation of FASD in the population. The adoption of strength- and community-based practices to improve engagement and address disparities, and to create health databases with prevalence rates that are representative of all forms of disability in both Aboriginal and non-Aboriginal populations are critical steps to close these gaps. (shrink)

Environmental ethicists and experts in human health have raised concerns about the effects of hydraulic fracking to access natural oil and gas resources found deep in shale rock formations on surrounding ecosystems and communities. In this study, we analyzed the prevalence of discourse on brain and mental health, and ethics, in the peer-reviewed and grey literature in the five-year period between 2016 and 2022. A total of 84 articles met inclusion criteria for analysis. Seventy-six percent (76%) mentioned impacts on brain (...) (e.g., neural tube defects, neurological symptoms), and mental health (e.g., negative psychological effects, stress, depression) briefly; 11 reports dedicated substantive discourse to either or both together. References to safety (77%) dominated the ethics context. Discussion of environmental injustices as fracking sites disproportionately affect vulnerable communities appeared in 38% of the papers. We examine the findings through the lens of environmental neuroethics that brings human-made changes to the environment, brain and mental health, and ethics together into three interwoven lines of inquiry. (shrink)

We expand on the article “Ethical Challenges Arising in the COVID-19 Pandemic: An Overview from the Association of Bioethics Program Directors (ABPD) Task Force” to consider the ways in which rural...

Highly portable and accessible MRI technology will allow researchers to conduct field-based MRI research in community settings. Previous guidance for researchers working with fixed MRI does not address the novel ethical, legal, and societal issues (ELSI) of portable MRI (pMRI). Our interdisciplinary Working Group (WG) previously identified 15 core ELSI challenges associated with pMRI research and recommended solutions. In this article, we distill those detailed recommendations into a Portable MRI Research ELSI Checklist that offers practical operational guidance for researchers (...) contemplating using this technology. (shrink)

Today, the earth is an interconnected globe humming with electronic transmissions-a chattering planet nestled in the provident silence of space. The ethical question is whether this is contributing to authentic human development and helping individuals and peoples to be true to their transcendent destiny. The new media are powerful tools for education, cultural enrichment, commercial activity, political participation, intercultural dialogue and understanding. They also can serve the cause of religion. Yet the new information technology needs to be informed and guided (...) by solidarity in the service of the common good bridging the digital divide within and among nations. The value-laden message of Western secular culture to people and traditional societies in many cases ill-prepared to evaluate it leads to widespread crisis, for example, in regard to marriage and family life. This technology can be a means for solving human problems, promoting the integral development of persons, creating a world governed by justice, peace, and love. It also can help men and women in their age-old search for self-understanding. Like today's world itself, the world of media, including the Internet, has been brought by Christ, inchoately yet truly, within the boundaries of the kingdom of God and placed in service to the word of salvation. (shrink)

Portable MRI for neuroimaging research in remote field settings can reach populations previously excluded from research, including communities underrepresented in current brain neuroscience databases and marginalized in health care. However, research conducted far from a medical institution and potentially in populations facing barriers to health care access raises the question of how to manage incidental findings (IFs) that may warrant clinical workup. Researchers should not withhold information about IFs from historically excluded and underserved population when members consent to receive it, (...) and instead should facilitate access to information and a pathway to clinical care. (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)

:Recent neuroimaging research on disorders of consciousness provides direct evidence of covert consciousness otherwise not detected clinically in a subset of severely brain-injured patients. These findings have motivated strategic development of binary communication paradigms, from which researchers interpret voluntary modulations in brain activity to glean information about patients’ residual cognitive functions and emotions. The discovery of such responsiveness raises ethical and legal issues concerning the exercise of autonomy and capacity for decisionmaking on matters such as healthcare, involvement in research, and (...) end of life. These advances have generated demands for access to the technology against a complex background of continued scientific advancement, questions about just allocation of healthcare resources, and unresolved legal issues. Interviews with professionals whose work is relevant to patients with disorders of consciousness reveal priorities concerning further basic research, legal and policy issues, and clinical considerations. (shrink)

People with mental illness are treated, in research, as a ‘class’ or category who are vulnerable, without always being clear why they should be treated as such, not why an individual, rather than the class, is vulnerable. The two main reasons given are lack of competence and power imbalance. Competence issues include incapacity and legislation, assessment and the impact of the illness in decisions. Power issues cover the role of mental health legislation, coercion, protectiveness and paternalism, stigma and (...) discrimination and the ‘well’ and ‘ill’ self. These are examined within a framework of risk assessment, both to the patient and to others. Over-concern to protect the vulnerable can lead to gate-keepers preventing their inclusion in studies at various stages of the research. This denies such groups a voice in the research process. It is suggested that ethical scrutiny of research is not only to prevent harm to the vulnerable, but also to provide a framework to empower such people to take part in research. To do otherwise is to further stigmatize and marginalize them. One way forward is to look at the risk presented by different types of research, from clinical intervention trials to non-therapeutic, qualitative studies and to modify capacity and access requirements in the light of the risks presented. (shrink)

Background and Purpose The decision to perform decompressive craniectomy for patients with malignant MCA syndrome can be ethically complex. We investigated factors that clinicians consider in this decision-making process. Methods A survey including clinical vignettes and attitudes questions surrounding the use of hemicraniectomy in malignant MCA syndrome was distributed to 203 neurosurgeons, neurologists, staff and residents, and nurses and allied health members specializing in the care of neurological patients. These were practicing health care providers situated in an urban setting in (...) Canada where access to health care is covered by national policy and is a human right. Results Eighty-eight participants responded to survey. All participants unanimously supported the procedure for young and healthy patients. Advanced age, the presence of aphasia, comorbid medical conditions, and poor baseline functional status were dominant factors associated with increasing reluctance to offer surgical decompression. Patients’ previously expressed wishes were also an important consideration. Eighty-six percent of respondents agreed that withholding surgery is ethically justified if the outcome is perceived as futile. Conclusions Health care providers use similar factors to determine if aggressive management is justified given anticipated burden on patient quality of life and extended impact on society. This convergence can be harnessed beneficially for the transparent communication of medical options in the ethically complex setting of decompressive hemicraniectomy post-stroke. (shrink)

The meaningful consideration of cultural practices, values and beliefs is a necessary component in the effective translation of advancements in neuroscience to clinical practice and public discourse. Society’s immense investment in biomedical science and technology, in conjunction with an increasingly diverse socio-cultural landscape, necessitates the study of how potential discoveries in neurodegenerative diseases such as Alzheimer disease are perceived and utilized across cultures. Building on the work of neuroscientists, ethicists and philosophers, we argue that the growing field of neuroethics provides (...) a pragmatic and constructive pathway to guide advancements in neuroscience in a manner that is culturally nuanced and relevant. Here we review a case study of one issue in culturally oriented neuroscience research where it is evident that traditional research ethics must be broadened and the values and needs of diverse populations considered for meaningful and relevant research practices. A global approach to neuroethics has the potential to furnish critical engagement with cultural considerations of advancements in neuroscience. (shrink)

Objectives To characterize recruitment approaches to research on the brain and mind that involves Indigenous peoples. Methods We conducted a secondary analysis of a Harding et al. (2021) scoping review. Reviewers screened studies (_n_ = 66) for sampling methods, recruitment and engagement, positionality statements, and details on ethics approvals. Synthesis We identified twenty-nine (29) English-language articles relevant to the analysis. Of these, 52% (_n_ = 15/29) reported a mix of sampling methods; 45% (_n_ = 13/29) contained statements or information about (...) author positionalities. While, overall, 24% (_n_ = 7/29) of the studies were missing information about ethics protocols, we observe an improvement over time in the reporting of approvals and use of community-engaged participant recruitment methods. Current brain research studies demonstrate ways of collaborating with Indigenous communities that meet existing ethics guidelines. To be wholly responsive to the needs of Indigenous peoples, however, researchers may need to exceed existing ethical benchmarks.. Positionality statements successfully detailed the relationships of the research teams with the communities with which they work, and contextualized recruitment methods. Conclusion Improved quality and meaningfulness of brain research with Indigenous peoples and trust in the research process and public health will be enhanced when remaining gaps in protecting and reporting of participant recruitment methods are closed. (shrink)

In an interview just before his death, Issan Dorsey, an American Zen priest and abbot of the Hartford Street Zen Center, stated, “AIDS is not fatal. Life is fatal. If you have AIDS, you are alive.” Although infected with AIDS, Issan worked to establish the Maitri Hospice for those dying from complications related to AIDS in the San Francisco Castro District, the heart of the gay and lesbian community. His efforts reflect the statement–although the body may be diseased, one (...) can continue to give abundantly and tirelessly, articulated by Vimalakirti in the Vimalakirtinirdesa Sutra. (shrink)

It is fundamental assumption in nursing theory that it is important for nurses to understand how patients experience states of ill health. This assumption is often related to aims of empathic understanding, but normative principles of social interpretation can have an important action‐guiding role whenever nurses seek to understand patients’ subjective horizons on the basis of active or passive expressions of meaning. The aim of this article is to present a philosophical theory of concept possession and to argue that it (...) can shed light on how nurses should seek to understand patients’ subjective perspectives on the meaning of illness. The two basic ideas in the theory are that patients’ beliefs and thoughts about their experiences involve concepts and that concepts can be communicated on the basis of shared implicit conceptions of what they mean. These conditions of understanding have a striking application: nurse‐patient communication is limited by many contextual factors, but it is often possible for nurses to detect shared implicit conceptions of the meaning of concepts of disease and illness. Furthermore, by acting as sympathetic linguistic experts and creating an atmosphere for dialogue, nurses can make patients feel comfortable about deferring to medical explanations of meaning that can constitute a communicative platform. The last part of the article uses a number of cases studies to show how these implications can be implemented as conceptual tools for securing meaningful communication about illness experiences in patient dialogue. (shrink)

Background: The research community has a mandate to discover effective treatments for neurodegenerative disorders. The ethics landscape surrounding this mandate is in a constant state of flux, and ongoing challenges place ever greater demands on investigators to be accountable to the public and to answer questions about the implications of their work for health care, society, and policy. Methods: We surveyed US-based investigators involved in neurodegenerative diseases research about how they value ethics-related issues, what motivates them to give consideration (...) to those issues, and the barriers to doing so. Using the NIH CRISP database we identified 1,034 researchers with relevant, active grants and invited them to complete an online questionnaire. We received 193 responses. We used exploratory factor analysis to transform individual survey questions into a smaller set of factors, and linear regression to understand the effect of key variables of interest on the factor scores. Results: Ethics-related issues clustered into two groups: research ethics and external influences. Heads of research groups viewed issues of research ethics to be more important than the other respondents. Concern about external influences was related to overall interest in ethics. Motivators clustered into five groups: ensuring public understanding, external forces, requirements, values, and press and public. Heads of research groups were more motivated to ensure public understanding of research than the other respondents. Barriers clustered into four groups: lack of resources, administrative burden, relevance to the research, and lack of interest. Perceived lack of ethics resources was a particular barrier for investigators working in drug discovery. Conclusions: The data suggest that senior level neuroscientists working in the field of neurodegeneration (ND), and drug discovery specifically, are motivated to consider ethics issues related to their work, but the perceived lack of ethics resources thwarts their efforts. With bioethics centres at more than 50% of the institutions at which these respondents reside, the neuroscience and bioethics communities appear to be disconnected. Dedicated ethical, legal and social implications (ELSI) programs, such as those fully integrated into genetics and regenerative medicine, provide models for achieving meaningful partnerships not yet adequately realized for scholars and trainees interested in drug discovery for ND. (shrink)

OBJECTIVES: To study some ethical problems created by accession of a previously nomadic and traditional society to modern invasive medicine, by assessment of physicians' attitudes towards sharing information and decision-making with patients in the setting of a serious illness. DESIGN: Self-completion questionnaire administered in 1993. SETTING: Riyadh, Jeddah, and Buraidah, three of the largest cities in Saudi Arabia. SURVEY SAMPLE: Senior and junior physicians from departments of internal medicine and critical care in six hospitals in the above cities. RESULTS: (...) A total of 249 physicians participated in the study. Less than half indicated they provided information on diagnosis and prognosis of serious illnesses all the time. Physicians who were more senior and those who spoke Arabic fared better than other groups. The majority preferred to discuss information with close relatives rather than patients, even when the patients were mentally competent. Most of the physicians felt patients had the right to refuse a specific treatment modality, and 68% denied patients the right to demand such a treatment if considered futile. Further analysis showed that physicians' attitudes varied along a spectrum from passive to paternalistic with the largest group in a balanced position. CONCLUSIONS: In traditional societies where physicians are regarded as figures of authority and family ties are important, there is a considerable shift of access to information and decision-making from patients to their physicians and relatives in a manner that threatens patients' autonomy. Ethical principles, wider availability of invasive medical technology and a rise in public awareness dictate an attitude change. (shrink)

This creative-critical piece reflects on the practices of recording, communicating, and caring that took place on social media and in digital spaces during the COVID-19 pandemic. Using my own experience of contracting COVID-19 as a starting point, the piece looks at the ways in which epidemics have often been recorded in collaborative ways, with the personal, professional, and familial converging in historical texts that could be used as sources of medical authority. COVID-19 has similarly been immortalized across a variety of (...) forms and by different communities. The piece particularly explores the ways in which collective epidemic experience has been represented online through autopathographical Tweets, TikTok cures, and group chat messages and the future purposes that such collaborative patient narratives can serve. (shrink)

This paper presents the preliminary results from my research focused on beliefs and practices related to the life cycle and certain health-illness processes related to their different stages, in two Mbya communities in the province of Misiones, in the Argentinian northeast. We have centered our research on parasite illnesses and the groups' numerous beliefs and experiences around their origin, diagnosis, prevention and therapeutics.We used observations and interviews to characterize the diagnosis, treatment and prevention strategies performed by different individuals as (...) well as recognize and define risk situations related with parasite infestation and transmission in the context of their domestic activities.Our investigation showed that certain forms of child care, in particular those related to respecting food prescriptions and taboos are meant to protect children from possible risk situations. (shrink)

Public health strategies recommend isolating patients with SARS-CoV-2 infection. But compassionate care in the intensive care unit (ICU) is an ethical obligation of modern medicine that cannot be justified by the risk of infection or the lack of personal protective equipment. This article describes the experiences of clinicians in ICUs in the south of Spain promoted by the Andalusian Society of Intensive Care SAMIUC, in the hope it will serve to improve the conditions in which these patients die, and to (...) help their families who suffer when they cannot say good-bye to their loved ones.In the south of Spain, healthcare professionals use daily videoconferencing to improve communication between clinicians, patients, and their relatives who cannot visit them in the ICU. This close communication allows families to see their loved ones and extends communication between healthcare professionals, patients, and their relatives. To allow family members to accompany patients at the end of life, it is possible to adapt public health rules to the epidemic situation. (shrink)

In Curanderismo and other traditional medicine systems, illnesses are understood to have somatic and emotional components and symptoms may be elicited by disruptions in interpersonal relationships between community members. An aspect of ritual interventions involves returning interpersonal relationships to balance and restoring harmonious interactions between members of the community. Important are shared understandings of the meaning of the symptoms, the mode of transmission of the illness, and the resolution that occurs through the process of the healer’s ritual (...) interventions. In this essay, I present a narrative description of the illness, La Envidia, which is associated with the expression of the emotion, envy. The narrative was shared with me by a person who is a migrant from an Afromestizo community of the Pacific Coast of Mexico to Atlanta, Georgia. The illness, La Envidia, is discussed and interpreted framed by perspectives including Participation Mystique and blurred psychological boundaries, traditional indigenous conceptualizations of illness, shamanism and symbolization processes, shared meaning, traditional Yoruba informed African conceptualizations of illness and healing practices, and somatic and embodied ritual experiences. (shrink)

In an earlier edition of CambridgeQuarterly, in the section (CQ Vol 9, No 4), Larry Gottlieb sought advice on ethics committee assembly and policy implementation for a community mental health center. One concern mentioned is that staff members frequently encounter ethical issuesregarding the care of clients whose decisionmaking abilities are impaired by chronic mental illness and/or substance abuse. My response offers a suggestion for policy development and implementation, which may be integrated into guiding staff members of community (...) mental health centers toward a model of care planning that is centered on clients' experiences of their treatments and on relationship-building among clients, community members, and mental health professionals. (shrink)

An evaluation of mental capacity is critical to a clinician's judgment about whether or not persons can make medical treatment decisions on their own behalf, and uncertainty about their ability to meaningfully participate in that process is one of the more common reasons an ethics consult is requested. The care of decisionally incapable patients—particularly those who lack advance care documents and no living relative who can speak for them—presents a quandary to healthcare personnel attempting to plan care in their best (...) interest, especially when options are multiple but none are ideal. These situations can be further complicated if involving a patient with a dual diagnosis of mental retardation and mental illness living in a community group home. (shrink)

The propositional view of communication states that every literal assertoric utterance of an indicative sentence expresses a proposition, and the audience understands those utterances only if she entertains the proposition(s) the speaker expressed. According to an important objection due to Ray Buchanan, the propositional view is ill‐equipped to handle meaning underdeterminacy. Using resources from situation semantics and MacFarlane's nonindexical contextualism, this article develops a view of literal communication close to the propositional view which overcomes Buchanan's underdeterminacy considerations while accounting for (...) the kind of indifference that typically characterizes speakers' intentions. (shrink)

From a psychological standpoint, communicating a severe diagnosis entails more than just naming a disease, it is a complex process with a number of stages: finding out what the patient already knows about the illness (some of which might be wrong, and thus psychologically detrimental), informing the patient while answering any questions (about the illness itself, the treatment, prognosis, recovery period, etc.) and last but not least, providing a minimum of psychological support depending on the patient’s reaction. Romanian (...) law regarding doctor-patient relationship and communication is modeled on the Anglo-Saxon model centered on patient autonomy and direct communication with the latter if the patient desires to know the truth about his condition. If this is not the case, the patient can name a proxy for doctor-patient communication. There are three legal documents that clarify these aspects: Law of Patient Rights, Medical Association’s Ethics Code and the Health Reform Law. The first two are conflicting on several aspects that we will discuss in this paper. The few studies on doctor-patient communication published in Romania reveal that there is no unitary methodology in this field. The doctors attest that often times the patient’s family, when faced with severe illness turn to the traditional model of communication, i.e. they desire to know the severe diagnosis first and pressure the physician to hide the truth form the patient, contrary to the letter of the law. The aim of this paper is to discuss the issue of communicating severe diagnosis in nowadays Romania in a very complex context: 1. The model of doctor-patient relationship and communication has changed after communist era (from paternalistic to partenerial); 2. Conflicting and missing issues in laws; 3. Laws based on patient’s autonomy principle in a traditional society based on another model of taking care (the patient is part of a family nucleus and the family wants to interfere into the medical communication process). Communication has only recently entered the curriculum of some medical schools in Romania. The doctors questioned as part of a study reveal that they‘ve learned to communicate a severe diagnosis by trial and error. This being said we recommend the inception of practical doctor-patient communication courses that could lead to improving doctor-patient relationships, communication of the diagnosis being their foundations. (shrink)

In Korean culture, illness is frequently considered punishment for sin. In spite of the prevalence of Western medicine and advanced technologies, moral judgment is frequently confused with physical causality. There are certain religious dietary customs which people undertake in order to be healed. These customs are open to misinterpretation, and can become a basis for accusation, fear and guilt. Women and people of inferior social status are easily accused of being the cause of illness within families and society. (...) The persecution of witchcraft in the medieval age developed from a similar mechanism: it is easier to scapegoat an individual or a small group than to take responsibility as an entire community. A religion that creates guilt and fear is not oriented towards health. Rather than being a blessing, it is, in fact, a problem. I consider whether religion is death or life oriented. Life giving energy for the sake of individual, as well as community, is an important component. (shrink)

Abstract.This paper responds to the Expert Patient initiative by questioning its over-reliance on instrumental forms of reasoning. It will be suggested that expertise of the patient suffering from chronic illness should not be exclusively seen in terms of a model of technical knowledge derived from the natural sciences, but should rather include an awareness of the hermeneutic skills that the patient needs in order to make sense of their illness and the impact that the illness has upon (...) their sense of self-identity. By appealing to MacIntyre’s concepts of “virtue” and “practice”, as well as Frank’s notion of the “wounded story-teller”, it will be argued that chronic illness can be constituted as a practice, by building a culture of honest and courageous story-telling about the experience of chronic suffering. The building of such a practice will renew the cultural resources available to the patient, the physician and the rest of the community in understanding illness and patient-hood. (shrink)

Discourse communities are groups of people who share common ideologies, and common ways of speaking about things. They can be sharply or loosely defined. We are each members of multiple discourse communities. Discourse can colonize the members of discourse communities, taking over domains of thought by means of ideology. The development of new discourse communities can serve positive ends, but discourse communities create risks as well. In our own work on the narratives of people with interests in health care, for (...) example, we find that patients speak of their illness experiences as victims of circumstance; policy makers construct adverse experiences and challenges as opportunities to be taken; health care workers speak from a mixed perspective, seeing themselves as both victims and opportunists depending on context. To be trapped within the discourse of a particular community is to put at risk the ability to communicate across discourses. Membership of a discourse community can impair the habit of critique, and deny opportunities for heteroglossic discourse. Privileging critique as a mode of discourse perhaps might define the ethical community, suggesting that ethical community may be an antidote to the constraining effects of conventional discourse community. (shrink)

Chronic diseases are major causes of health inequalities. Community nurses can potentially make large contributions to chronic illness prevention and management in Israel but may be obstructed by professional dominance of physicians. However, insufficient research exists about community nursing in Israel, and how it may differ from other countries. This study aims to document chronic disease‐related community nursing roles in Israel, identify changes and trends in community nursing roles that may increase social justice, and understand (...) how the roles and trends in community health nursing in Israel may differ from developments in other countries. In‐depth interviews were performed with 55 Israeli health system professionals, and 692 nurse care‐givers were asked open‐ended questions. Interview answers were analyzed to find themes and trends. The study found that community nurse roles in Israel have expanded, especially for chronic disease control. Commonalities exist with countries such as the United States and the UK, albeit with important differences. However, continued conflicts with physicians exist, which can limit nurses' contributions to reducing health inequalities. Community nurses' importance is growing. Enabling them to overcome professional dominance and improve chronic disease control can help reduce health inequalities in Israel and elsewhere. (shrink)

The treatment of life-threatening illnesses in childhood is replete with ethical issues and with clinical issues that have ethical implications. The central issues are those involved with a child's participation in the decision-making process and with communication of information about the illness and treatments to children. This article examines the questions of patient autonomy and of parental responsibility and prerogative in the context of pediatric oncology. Included in this examination of the ethical dimensions of pediatric life-threatening illness is (...) a discussion of the many related aspects involved, including medical, cultural, psychosocial, legal, and developmental. A multidimensional approach that considers the ways in which these multiple aspects interact with one another, and which focuses on establishing a strong working alliance between the health care team and the pediatric patient's family, can help to avoid or resolve potential ethical and clinical conflicts. (shrink)

In “The Epidemiology of ‘Regrettable Kinship’: Gender, Epidemic, and Community in Todd Haynes' [Safe] and Richard Powers' Gain,” the author analyzes two contemporary cultural texts about women and environmentally-linked illnesses to rethink commonplace understandings of the relationship between gender, disease, and community formation. By reading these narratives side by side, Lynch is able to address difficult issues about gendered subjectivity and the fragile construction of collective political identity. While the female protagonists in the texts Lynch examines relate differently (...) to their illnesses, both portray the ways in which women negotiate the potential and limitations of “illness communities.”. (shrink)

Our analysis reveals two major types of "Community of Learners" (COL) projects: instrumental and ontological. In instrumental COL, the notion of community is separated from instruction in order to reach some preset endpoints: curricular or otherwise. We notice three main instrumental COL models: relational, instructional, and engagement. Ontological COL redefines learning as an ill-defined, distributed, social, multi-faceted, poly-goal, agency-based, and situated process that integrates all educational aspects. We will consider two ontological COL projects into: narrowly dialogic and polyphonic.

In this article, we explore the possibility of adding a new role to the clinical encounter: an illness doula. Even though research and education in medical humanities and narrative medicine have made improvements in humanizing healthcare, progress is slow and ongoing. There needs to be an intervention in the practice of healthcare now for people currently going through the system. An illness doula, like a birth doula, would facilitate and insure that attention is paid to the personal needs (...) and desires of the patient in the present system. We envision illness doulas having the ability and availability to accompany the patient throughout the healthcare process, to help communicate with clinicians, and to ensure that patient preferences are understood and respected along the way. We discuss how this idea emerged through the clinical encounters of two of our authors, the possibilities and limitations of creating a new role for illness doulas, and the logistics of how to put this new role into play. (shrink)

Background: Heart failure is a major growing problem and affects not only patients but also their families and community networks and reduces the functional capacity of patients and impairs their social life. Research questions: This study was conducted to investigate relationship between illness-related worries and social dignity in patients with heart failure. Design: The study had a descriptive-analytic design, and data collection was carried out by means of two specific questionnaires. Participants and context: A total of 130 inpatients (...) from cardiac wards in hospitals affiliated with Tehran and Shahid Beheshti University of Medical Sciences participated. Ethical consideration: This study was approved by the Research Committee of Shahid Beheshti University of Medical Sciences. Results: The highest mean score of illness-related worries was attributed to the dimension of patient’s worry of physical–mental complications, and the least mean score was related to the dimension of the worry about the future of disease. The highest mean score of social dignity was associated with the dimension of social communication and support, and the least is attributed to the dimension of burden to others (economic). Pearson’s statistical test showed a significant correlation (r = 0.455, p < 0.05) between the score of illness-related worries and social dignity. Discussion: As the result of this study showed that reducing illness-related worries in patients with heart failure can improve their social dignity, using strategies to decrease worries and promote social dignity in these patients is recommended. Conclusion: This study affirms the importance of careful evaluation of individual patients to determine their needs related to dignity. We hope these results will help to promote actions by patient-care staff that honor and support patient dignity, resulting in benefits to patients and developing the quality of care based on human rights. (shrink)