The American Journal of Bioethics, Volume 11, Issue 11, Page 42-43, November 2011.

Based on action research as a practitioner‐involving approach, this article communicates the findings of a two‐year study on implementing patient participation as an empowering learning process for both patients and rehabilitation nurses. At a rehabilitation facility for patients who have sustained spinal cord injuries, eight nurses were engaged throughout the process aiming at improving patient participation. The current practice was explored to understand possibilities and obstacles to patient participation. Observations, interviews and logbooks, creative workshops and reflective (...) meetings led to the development and testing of four new rehabilitation initiatives aimed at enhancing patient participation. This study suggests that skills of critical reflection from action research toolbox shed light on both the notion of patient participation and caring in nursing rehabilitation. By actively involving nurses in research, the knowledge development stems from practice and the solutions therefore became practice‐oriented. In addition, the personal and professional development experienced by the involved nurses points to a secondary gain in the form of an analytical and reflective approach to complex issues in relation to patient participation, rehabilitation in general and the individual nurses' sense of professional pride. (shrink)

Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. “What is PER?” is an impressionistic illustration of the challenges and issues that can be found in (...) the universe of patient engagement in research. (shrink)

Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. “What is PER?” is an impressionistic illustration of the challenges and issues that can be found in (...) the universe of patient engagement in research. (shrink)

The coronavirus disease pandemic has not only brought the risk of death but has brought unbearable psychological pressures to the people. Mental health of COVID patients is expected to be affected by the continuous spread of the pandemic. This study aims to find the mediating role of coping styles in the relationship between life orientation and psychological distress among COVID recovered patients. It was hypothesized that: life orientation is likely to have a relationship with coping; coping is likely to have (...) a relationship with psychological distress and coping is likely to mediate the relationship between life orientation and psychological distress among patients recovered from COVID. For this purpose, 378 COVID-10 recovered patients’ men and women. Urdu translations of the Life Orientation scale revised, Brief Coping Orientation to Problem Experienced and Impact of event scales were used to collect data. Results show that emotion-focused and avoidant coping mediate the relationship between life orientation and psychological distress. The research has implications for mental health practitioners and individuals dealing with health-related issues. (shrink)

Background The significance of medical implants goes beyond technical functioning and reaches into everyday life, with consequences for individuals as well as society. Ethical aspects associated with the everyday use of implants are relevant for individuals’ lifeworlds and need to be considered in implant care and in the course of technical developments. Methods This scoping review aimed to provide a synthesis of the existing evidence regarding ethically relevant psychosocial and cultural aspects in cochlear, glaucoma and cardiovascular implants in patient-centered (...) empirical research. Systematic literature searches were conducted in EBSCOhost, Philpapers, PsycNET, Pubmed, Web of Science and BELIT databases. Eligible studies were articles in German or English language published since 2000 dealing with ethically relevant aspects of cochlear, glaucoma and passive cardiovascular implants based on empirical findings from the perspective of (prospective) implant-wearers and their significant others. Following a descriptive-analytical approach, a data extraction form was developed and relevant data were extracted accordingly. We combined a basic numerical analysis of study characteristics with a thematically organized narrative synthesis of the data. Results Sixty-nine studies were included in the present analysis. Fifty were in the field of cochlear implants, sixteen in the field of passive cardiovascular implants and three in the field of glaucoma implants. Implant-related aspects were mainly found in connection with autonomy, freedom, identity, participation and justice, whereas little to no data was found with regards to ethical principles of privacy, safety or sustainability. Conclusions Empirical research on ethical aspects of implant use in everyday life is highly relevant, but marked by ambiguity and unclarity in the operationalization of ethical terms and contextualization. A transparent orientation framework for the exploration and acknowledgment of ethical aspects in “lived experiences” may contribute to the improvement of individual care, healthcare programs and research quality in this area. Ethics-sensitive care requires creating awareness for cultural and identity-related issues, promoting health literacy to strengthen patient autonomy as well as adjusting healthcare programs accordingly. More consideration needs to be given to sustainability issues in implant development and care according to an approach of ethics-by-design. (shrink)

Uses a social contingency analysis derived from behavioral psychology to compare research and practice. The components of a contingency (occasion, behavior, and consequence) present in a variety of research, treatment, and educational situations are discussed. Subjective terms such as intent, coercion, and consent are analyzed by means of a behavioral approach. Implications include the possible value of a collegial, symmetrical relationship between the professional and the individual in both research and practice domains. Such a relationship is consistent (...) with current dissatisfaction with the social fiduciary model of contractual relations between professionals and individuals. According to this model, one party exercises powers in fulfillment of a trust from the other party. There has been increasing rejection on the part of the public of this "let-us-do-the-driving," "you're-in-good-hands-with-Allstate" orientation adopted by some professionals. The suggested alternative approach, a social contractual model, has the advantage of recognizing this rejection. (39 ref) (PsycINFO Database Record (c) 2012 APA, all rights reserved). (shrink)

Patient advocacy organizations provide patient- and caregiver-oriented education, advocacy, and support services. PAOs are formally organized nonprofit groups that concern themselves with medical conditions or potential medical conditions and have a mission and take actions that seek to help people affected by those medical conditions or to help their families. Examples of PAOs include the American Cancer Society, the National Alliance on Mental Illness, and the American Heart Association. These organizations advocate for, and provide services to, millions (...) of people with physical and mental conditions — such as cancer, mental illness, diabetes, and cardiovascular disease — via their outreach, meetings, counseling, websites, and published materials. A PAO usually seeks to raise public awareness of a disease’s symptoms, risk factors, and treatment options and promotes research to cure or to prevent that disease. (shrink)

‘Patient satisfaction’: Knowledge for ruling hospital reform — An institutional ethnography Driven by funding restraint, Canadian health‐care has undergone over a decade of significant reform. Hospitals are being restructured, as text‐based practices of accountability bring a new business‐orientation into hospital and clinical management. New forms of knowledge, generated through records of various sorts, are a necessary resource for managing care in the new environment. This paper's research uses Canadian sociologist Dorothy E. Smith's institutional ethnographic methodology to critically analyse (...) one instance of text‐based management. I analyse information about ‘patient satisfaction’ as it is generated through a patient survey (in which I was implicated through my involvement with a hospitalized family member). Subsequently, I have studied the management environment into which that information would be entered. I argue that in the instance analysed, the information becomes part of a dominant consumer oriented healthcare discourse that subordinates concerns about ‘what actually happened’ as a professional caregiver would have known it. On this basis, I contend that this sort of taken‐for‐granted approach to making decisions about quality care in hospitals may be seriously, even dangerously, flawed. (shrink)

After the ‘empirical turn’ in bioethics, few specific approaches have been developed for doing clinical ethics research in close connection with clinical decision-making on a daily basis. In this paper we describe the ‘committed researcher’ approach to research in clinical ethics that we have developed over the years. After comparing it to two similar research methodological approaches, the ‘embedded researcher’ and ‘deliberative engagement’, we highlight its main features: it is patient-oriented, it is implemented by collegial (...) and multidisciplinary teams, it uses an ethical grid to build the interview guide, and it is geared towards bringing the results to bear on the public debate surrounding the issue at stake. Finally, we position our methodological approach with respect to the ‘is vs. ought’ distinction. We argue that our ‘commitment researcher’ approach to clinical ethics research takes concerned people’s life-building values as the main data, and compares them to the larger normative framework underlying the medical practice at stake. (shrink)

BackgroundIn the US, many patients forgo recommended care due to cost. The ANA Code of Ethics requires nurses to give care based on need. Therefore, US nurses are compelled to practice in a context which breaches their professional ethical code.Research ObjectivesThis study sought to determine if nurses do care for patients who forgo treatment due to cost (PFTDC) and if so, does this result in an experience of moral distress (MD).Research DesignSemi-structured interviews were transcribed and analyzed using a (...) qualitative content analysis.Participants and Research ContextA convenience sample of 20 nurses in practice for at least one year from a variety of health care setting participated.Ethical ConsiderationsThis project was approved by the Michigan State University Biomedical Institutional Review Board.ResultsThere were 19 female and one male nurse-participants, averaging 47 years old with an average of 10 years in practice. 18 reported caring for PFTDC. These 17 nurse-participants experienced a moderate degree of MD as a result, averaging 5.4 of 10 on the Moral Distress Thermometer. In the interviews, the following themes were identified, strategies to help PFTDC, and the broken US health care system which had the subthemes of preference for business over patient-oriented benefit, PFTDC using the emergency department, and limited support for treatment/management of PFTDC.ConclusionsThe existence of this phenomenon places the profession of nursing in the US in a position of moral compromise and threatens to corrupt the institution of nursing in the US. (shrink)

Background Respect is essential to providing high quality healthcare, particularly for groups that are historically marginalized and stigmatized. While ethical principles taught to health professionals focus on patient autonomy as the object of respect for persons, limited studies explore patients’ views of respect. The purpose of this study was to explore the perspectives of a multiculturally diverse group of low-income women living with HIV (WLH) regarding their experience of respect from their medical physicians. Methods We analyzed 57 semi-structured interviews (...) conducted at HIV case management sites in South Florida as part of a larger qualitative study that explored practices facilitating retention and adherence in care. Women were eligible to participate if they identified as African American (n = 28), Hispanic/Latina (n = 22), or Haitian (n = 7). They were asked to describe instances when they were treated with respect by their medical physicians. Interviews were conducted by a fluent research interviewer in either English, Spanish, or Haitian Creole, depending on participant’s language preference. Transcripts were translated, back-translated and reviewed in entirety for any statements or comments about “respect.” After independent coding by 3 investigators, we used a consensual thematic analysis approach to determine themes. Results Results from this study grouped into two overarching classifications: respect manifested in physicians’ orientation towards the patient (i.e., interpersonal behaviors in interactions) and respect in medical professionalism (i.e., clinic procedures and practices). Four main themes emerged regarding respect in provider’s orientation towards the patient: being treated as a person, treated as an equal, treated without blame or prejudice, and treated with concern/emotional support. Two main themes emerged regarding respect as evidenced in medical professionalism: physician availability and considerations of privacy. Conclusions Findings suggest a more robust conception of what ‘respect for persons’ entails in medical ethics for a diverse group of low-income women living with HIV. Findings have implications for broadening areas of focus of future bioethics education, training, and research to include components of interpersonal relationship development, communication, and clinic procedures. We suggest these areas of training may increase respectful medical care experiences and potentially serve to influence persistent and known social and structural determinants of health through provider interactions and health care delivery. (shrink)

Doing phenomenological research entails a complex process that is only minimally published in scientific journals. What is often missing reflects how being in research calls into question the researchers themselves. Anyone who has conducted qualitative empirical research knows that personal engagement does not come at no cost; there are multiple pedagogical and professional practice gains. This article’s aim is to share the phenomenology behind phenomenology: the reflection and personal experience of doing/being in phenomenological research and the (...) personal narrative of what this experience has meant concerning the authors' own context: health care and nursing. Taking advantage of a conducted research exploring the lived experience of family caregivers of hematological patients assisted at home, we propose considerations about the perceived epistemic and cognitive gains, the formative and personal/professional sequels of having been reflective participants of phenomenologically oriented research. (shrink)

Technological measures meant to change sexual orientation are, we have argued elsewhere, deeply alarming, even and indeed especially if they are safe and effective. Here we point out that this in part because they produce a distinctive kind of ‘clinical collective action problem’, a sort of dilemma for individual clinicians and researchers: a treatment which evidently relieves the suffering of particular patients, but in the process contributes to a practice that substantially worsens the conditions that produce this suffering in the (...) first place. We argue that the role obligations of clinicians to relieve the suffering of their patients put them in a poor position to solve this problem, though they can take measures to avoid complicity in the harms that would result from widespread use of individually safe and effective reorientation biotechnology. But in the end the medical community as a whole still seems obligated to provide these measures, if they become technologically feasible. Medical researchers are in a better position to prevent the harms that would result if reorientation techniques were safe, effective and widely available. We argue that the harms attendant on the development of safe and effective re-orientation techniques give researchers reason to avoid ‘applied‘ research aimed at developing these techniques, and to be careful in the conduct of basic orientation research which might be applied in this way. (shrink)

Professional management in health care is very much dependent on the model of health that is assumed by healthcare providers. The current model derives from a chemical/mechanical view of the patient body. Simply put: we are healthy if all of our mechanical parts are working properly and if all of the chemicals in our body are in the right proportions and have the appropriate reactions. This view is based on philosophical accounts of the body that go back to Paracelsus, (...) Bacon, Descartes and others. It became the central basis of medical practice only in the late 19th Century after several hundred years of research and professional politics. The success of the chemical/mechanical model has been so great that the social and relational aspects of health have been largely ignored. Yet we know that people require the resources not only of (mechanical) exercise and proper nutrition (chemical) in order to develop into healthy adults; they also need loving relationships, good friends and a viable social context. A growing movement has emerged that includes philosophers who recognize the Cartesian error, physicians and nurses who are searching for a more humane healthcare management, and patients and families who feel the need for a better understanding of the social and relational aspects of their health. The Chemical/Mechanical Patient traces the intellectual development of the chemical/mechanical model of the patient and its implementation and the provides a sound and readily understandable philosophical and historical basis for this new and growing movement towards a social/relational model of health. This book names the problem and prepares us to respond to the exaggerated place of the chemical mechanical model in our society. It provides a historical and conceptual background and explains how the chemical/mechanical model of health gained such a strong hold over our thinking and took the place of the earlier Galenic humoral model. It sketches a promising outline of a more humanized model for understanding health and calls for help to fully articulate it. In that way, it joins a growing movement to go beyond our current chemical/mechanical orientation. (shrink)

The red tape and delays around research ethics and governance approvals frequently frustrate researchers yet, as the lesser of two evils, are largely accepted as unavoidable. Here we quantify aspects of the research ethics and governance approvals for one interview- and questionnaire-based study conducted in England which used the National Health Service procedures and the electronic Integrated Research Application System. We demonstrate the enormous impact of existing approvals processes on costs of studies, including opportunity costs to focus (...) on the substantive research, and suggest directions for radical system change. We have recorded 491 exchanges with 89 individuals involved in research ethics and governance approvals, generating 193 pages of email text excluding attachments. These are conservative estimates. The exchanges were conducted outside IRAS, expected to be the platform where all necessary documents are provided and questions addressed. Importantly, the figures exclude the actual work of preparing the ethics documentation. We propose six areas of work to enable system change: 1. Support the development of a broad range of customised research ethics and governance templates to complement generic, typically clinical trials orientated, ones; 2. Develop more sophisticated and flexible frameworks for study classification; 3. Link with associated processes for assessment, feedback, monitoring and reporting, such as ones involving funders and patient and public involvement groups; 4. Invest in a new generation IT infrastructure; 5. Enhance system capacity through increasing online reviewer participation and training; and 6. Encourage researchers to quantify the approvals processes for their studies. Ethics and governance approvals are burdensome for historical reasons and not because of the nature of the task. There are many opportunities to improve their efficiency and analytic depth in an age of innovation, increased connectivity and distributed working. If we continue to work under current systems, we are perpetuating, paradoxically, an unethical system of research approvals by virtue of its wastefulness and impoverished ethical debate. (shrink)

Throughout much of the world, universities have driven towards industrial partnerships. This collaboration, which, in the biochemical field at least, has to continue if potential benefits for patients are to be realised, has brought with it a number of problems. These include the neglect of long-term research in favour of short-term projects, the curtailing of free dissemination of research information within university departments and the biasing of results of clinical trials by the financial interests of the investigators.It is (...) very important that governments, universities, and industry itself address these problems. Universities should monitor the amount of basic, curiosity-driven research that is being carried on, compared with that which is more short-term goal orientated. PhD students and post-doctoral fellows should be exposed to the principles of bioethics early on in their careers. Further work is necessary on the terms of research contracts to protect, on the one hand, the rights of individual scientists and, on the other, industry from rogue scientists. Where problems arise, procedures should be in place for independent reviews to be conducted by bodies such as the Medical Research Council in the UK or the National Institutes of Health in the USA. The conflict-of-interest rules recently introduced for publication in medical journals should be extended to all branches of science. (shrink)

Medical research is widely thought to have a fundamentally therapeutic orientation, in spite of the fact that clinical research is thought to be ethically distinct from medical care. We need an entirely new conception of clinical research ethics—one that looks to science instead of the doctor‐patient relationship.

Many health care decisions depend not only upon medical facts, but also on value judgments—patient goals and preferences. Until recent decades, patients relied on doctors to tell them what to do. Then ethicists and others convinced clinicians to adopt a paradigm shift in medical practice, to recognize patient autonomy, by orienting decision making toward the unique goals of individual patients. Unfortunately, current medical practice often falls short of empowering patients. In this article, we reflect on whether the current (...) state of medical decision making effectively promotes patients' health care goals. We base our reflections, in part, on research in which we observed physicians making earnest efforts to partner with patients in making treatment decisions, but still struggling to empower patients—failing to communicate clearly to patients about decision-relevant information, overwhelming patients with irrelevant information, overlooking when patients' emotions made it hard to engage in choices, and making recommendations before discussing patients' goals. (shrink)

In my recent article, I addressed the question of whether a potential categorical exclusion of decisionally impaired patients from non-therapeutic medical research would be inaccordance with the Principle of Justice as Fairness. I came to the conclusion that a categorical exclusion of decisionally impaired persons from relevant research projects may collide with Rawls’s understanding of Justice as Fairness. Derek Bell has criticized my paper by denying that it is legitimate to apply Rawls to this bioethical problem. In my (...) restatement I try to show that an extrapolation of John Rawls’s thought to such bioethical cases is possible, because Rawls himself has written that his orientation towards decisionally non-impaired persons is an idealized situation that allows extrapolations. In a second part I try to show that Bell hasroughly misunderstood my concept of “presumed consent” which I make a prerequisite for the legitimisation of research on decisionally impaired persons. In using advance consent as a proposal for resolving the problem, Bell has indirectly confirmed my approach because he is using a similar construct of consent, which operates with similar hypotheses and probabilities of error. I see here no categorical difference between Bell’s conclusion and my discussion. Thus, Bell’s reply does not represent a refutation of my thoughts, but rather it is a para phrased confirmation of my central theses. I conclude by showing the relevance of Rawls, pointing out that the discussion between Bell and me illustrates how Rawls’s concept of reflective equilibrium is an appropriate approach to finding a solution to this bioethical problem. (shrink)

The present paper focuses on the nurse–patient relationship in forensic psychiatric care. From research in the field six categories of nurse–patient interactions are identified: ‘building and sustaining relationships’, ‘supportive/encouraging interactions’, ‘social skills training’, ‘reality orientation’, ‘reflective interactions’ and ‘practical skills training’. The content of each category of interaction in the context of forensic psychiatric care is described. A conceptual model is presented together with an empirical, philosophical and theoretical foundation for the use of verbal and social interactions (...) in nurse–patient interactions in forensic psychiatric nursing care. The implications and possible uses of the model in the practical field of forensic psychiatric care are discussed. (shrink)

Violence in psychiatric clinics has been a consistent problem since the birth of modern psychiatry. In this paper, I examine current efforts to understand and reduce both violence and coercive responses to violence in psychiatry, arguing that these efforts are destined to fall short. By and large, scholarship on psychiatric violence reduction has focused on identifying discrete factors that are statistically associated with violence, such as patient demographics and clinical qualities, in an effort to quantify risk and predict violent (...) acts before they happen. Using the work of Horkheimer and Adorno, I characterize the theoretical orientation of such efforts as identity thinking. I then argue that these approaches lead to epistemic imperceptiveness and a subtle form of conceptual restraint on patients. I suggest a reorientation in psychiatric research, away from identity thinking and toward a more productive and just approach to the problem of violence in psychiatric clinics. (shrink)

Whereas evidence-based medicine (EBM) encourages the translation of medical research into decision-making through clinical practice guidelines (CPGs), patient-centred care (PCC) aims to integrate patient values through shared decision-making. In order to successfully integrate EBM and PCC, I propose a method of orienting physician decision-making to overcome the different obligations set out by a formally-rational EBM and substantively-rational ethics of care. I engage with Weber’s concepts “the ethic of responsibility” andverstehenas a new model of clinical reasoning that reformulates (...) the relationship between medical knowledge and social values, while demonstrating the relevance of the classical sociological cannon to contemporary medical humanities. (shrink)

Contemporary psychiatry is becoming more biologically oriented in the attempt to elicit a biological rationale of mental diseases. Although mental disorders comprise mostly functional abnormalities, there is a substantial overlap between neurology and psychiatry in addressing cognitive disturbances. In schizophrenia, the presence of cognitive impairment prior to the onset of psychosis and early after its manifestation suggests that some neurocognitive abnormalities precede the onset of psychosis and may represent a trait marker. These cognitive alterations may arise from functional disconnectivity, (...) as no significant brain damage has been found. In this review we aim to revise A.R. Luria’s systematic approach used in the neuropsychological evaluation of cognitive functions, which was primarily applied in patients with neurological disorders and in the cognitive evaluation in schizophrenia and other related disorders. As proposed by Luria, cognitive processes, associated with higher cortical functions, may represent functional systems that are not localized in narrow, circumscribed areas of the brain, but occur among groups of concertedly working brain structures, each of which makes its own particular contribution to the organization of the functional system. Current developments in neuroscience provide evidence of functional connectivity in the brain. Therefore, Luria’s approach may serve as a frame of reference for the analysis and interpretation of cognitive functions in general and their abnormalities in schizophrenia in particular. Having said that, modern technology, as well as experimental evidence, may help us to understand the brain better and lead us towards creating a new classification of cognitive functions. In schizophrenia research, multidisciplinary approaches must be utilized to address specific cognitive alterations. The relationships among the components of cognitive functions derived from the functional connectivity of the brain may provide an insight into cognitive machinery. (shrink)

When a patient with a serious mental illness expresses a desire for children, mental health professionals are faced with an ethical dilemma. To date, little research has been conducted into their strategies for dealing with these issues.

Reconstructive allografts using Vascularized Composite Allotransplantation are providing individuals living with upper limb loss and facial disfigurement with new opportunities for a sensate, esthetically acceptable, and functional alternative to current treatment strategies. Important research attention is being paid to how best to assess and screen candidates for VCA, measure optimal patient outcomes, and support patient adherence to lifelong behaviors and medical regimens. Far less attention, however, has been dedicated to the team science required for these complex VCA (...) teams to form, prepare, and provide the highest quality clinical and psychosocial care to those receiving VCA. VCA teams are unique in that they require specialized team members whose scope of practice may not otherwise overlap. The team also needs to constantly negotiate balancing patient safety with multiple risks throughout the transplant process. This study aimed to elucidate the team science needed for this highly innovative and complex area of medicine. Using in-depth qualitative interviews with 14 VCA team members and observations at team meetings, we found that careful consideration of team composition, team structure, and organizational commitment influences team performance and patient outcomes, but that to be efficient and truly effective, teams need to commit to developing processes that foster collaboration. These processes are action-oriented, strategic and interpersonal. Dedication and commitment to team science allows teams to manage conflict under stress and exercise ways to leverage strengths to provide optimal performance or patient psychosocial and clinical outcomes. This study can provide insight into quality improvement efforts for VCA teams and guidance for other transplant programs that wish to consider expansion into VCA. (shrink)

In this paper, we examine the case of psychedelic medicine for Alzheimer’s disease and related dementias (AD/ADRD). These “mind-altering” drugs are not currently offered as treatments to persons with AD/ADRD, though there is growing interest in their use to treat underlying causes and associated psychiatric symptoms. We present a research agenda for examining the ethics of psychedelic medicine and research involving persons living with AD/ADRD, and offer preliminary analyses of six ethical issues: the impact of psychedelics on autonomy (...) and consent; the impact of “ego dissolution” on persons experiencing a pathology of self; how psychedelics might impact caregiving; the potential exploitation of patient desperation; institutional review boards’ orientation to psychedelic research; and methods to mitigate inequity. These ethical issues are magnified for AD/ADRD but bear broader relevance to psychedelic medicine and research in other clinical populations. (shrink)

Telepsychotherapy is an increasingly common way of conducting psychotherapy. Previous research has shown that patients usually have positive experiences of online therapy, however, with large individual differences. The aim of this study was to explore patients’ experiences of transition from in-person psychotherapy sessions to telepsychotherapy during the COVID-19 pandemic, as well as variation in the experiences with regard to the patients’ personality orientation. Seven psychotherapy patients in Sweden were interviewed and the transcripts were analyzed using thematic analysis. Additionally, the (...) participants were asked to rate their dissatisfaction/satisfaction with the transition, how hindering/helpful the transition was, and how unsafe/safe they felt after the transition in comparison to before. Personality orientation on relatedness or self-definition was assessed applying a self-assessment instrument. The participants experienced telepsychotherapy as qualitatively different from in-person psychotherapy. They reported several essential losses: the rituals surrounding therapy sessions were lost, including the transitional time and space between their every-day life and the therapy sessions, less therapeutic work was done, the therapists could lose their therapeutic stance, the sense of rapport was impaired, and the patients felt less open and emotionally available. On the other hand, some patients could feel freer online. As six of the participants had an anaclitic personality orientation, the present study could especially contribute to the understanding of how patients with strong affiliative needs and fear of abandonment experience the transition to meeting their therapists via communication technology. The participants’ self-ratings showed that they were only marginally dissatisfied with the transition and experienced the transition as slightly hindering, whereas they felt rather safe after the transition, indicating low concordance between qualitative and quantitative evaluations. New studies are needed to explore the introjective patients’ experiences of the transition. An essential topic is also to collect evidence and to test how the impaired sense of rapport when using communication technology can be remedied by adequate, patient-tailored interventions, a topic that has to be included in psychotherapy education and training. (shrink)

Throughout much of the world, universities have driven towards industrial partnerships. This collaboration, which, in the biochemical field at least, has to continue if potential benefits for patients are to be realised, has brought with it a number of problems. These include the neglect of long-term research in favour of short-term projects, the curtailing of free dissemination of research information within university departments and the biasing of results of clinical trials by the financial interests of the investigators. It (...) is very important that governments, universities, and industry itself address these problems. Universities should monitor the amount of basic, curiosity-driven research that is being carried on, compared with that which is more short-term goal orientated. PhD students and post-doctoral fellows should be exposed to the principles of bioethics early on in their careers. Further work is necessary on the terms of research contracts to protect, on the one hand, the rights of individual scientists and, on the other, industry from rogue scientists. Where problems arise, procedures should be in place for independent reviews to be conducted by bodies such as the Medical Research Council in the UK or the National Institutes of Health in the USA. The conflict-of-interest rules recently introduced for publication in medical journals should be extended to all branches of science. (shrink)

: Medical research is widely thought to have a fundamentally therapeutic orientation, in spite of the fact that clinical research is thought to be ethically distinct from medical care. We need an entirely new conception of clinical research ethics—one that looks to science instead of the doctor-patient relationship.

Background Nurses tasked with providing care which they perceive as increasing suffering often experience moral distress. Response to moral distress in nurse wellbeing has been widely studied. Less research exists that probes practicing nurses’ foundations of moral beliefs. Aims The purpose of this phenomenological study was to gain understanding of nurse meaning-making of morally distressing situations, with particular attention to ethical norms, moral agency and resiliency, and nurse religious/spiritual orientation. Design This exploratory study employed semi-structured interviews using open-ended questions. (...) Qualitative data analysis was assisted by MAXQDA software. Participants and research context Nine pulmonary care nurses during COVID-19 in a tertiary care teaching hospital in the northeastern United States. Ethical considerations The study was approved by the IRB. Participants were consented before the study and confidentiality was preserved. Findings/results The study revealed three main themes of meaning-making, rooted in the identity of the “good nurse”: Being true to one’s own values, pursuing ideal patient care (“doing good”), and conforming to/challenging values of the system and culture. Tensions were found between (a) nurse’s own values (b) duty to institutional norms and duty to nurse’s personal code of ethics, and (c) perceptions of institutional support in response to nurse moral distress. Religion was described as a remote source of nurse moral values, among other sources. Spiritual practices were not experienced as sufficient in coping with moral distress at the bedside. Conclusions The study suggests nurses need more opportunities to engage in reflection on their practice and values. The findings also indicate need for accessible institutional supports for nurses experiencing moral distress and strategic use of chaplains in helping with moral distress. Further research is needed on the interplay of nurse spirituality, moral agency, and reflective practice in the face of morally challenging situations. (shrink)

This article examines how distrust drives exchange. We propose a theoretical framework integrating the literature of trust into cultural sociology and use a case of patients giving hongbao (red envelopes containing money) to doctors in China to examine how distrust drives different forms of unofficial exchange. Based on more than two years’ ethnography, we found that hongbao exchanges between Chinese patients and doctors were, ironically, bred by the public’s generalized distrust in doctors’ moral ethics. In the absence of institutional assurance, (...) Chinese patients drew on the cultural logic of particularism and its associated cultural repertoire to induce fidelity from their physicians. They mobilized interpersonal networks to function as assurance and presented hongbao as a return of favor to the doctors. This form of exchange is gifting-oriented. Alternatively, if there were no interpersonal networks to rely on, they proactively offered hongbao to doctors at arm’s length in an attempt to personalize the relationship to seek assurance and abate their anxieties. This form of exchange is bribery-oriented. Both forms of exchange co-existed when there was one-way generalized distrust manifested from patients to doctors. When doctors also developed generalized distrust in patients, arm’s length exchanges declined, leaving embedded exchanges as the dominant form. Our study asserts the central role of culture in constituting exchange behaviors and the importance of institutions in shaping the form of exchange. It contributes to the midrange theory of trust, generating a number of hypotheses for future research on the relationships among culture, institutions, distrust, assurance, and illicit exchange. (shrink)

Phenomenological psychiatry has suffered from a failure to translate its insights into terms specific enough to be applied to psychiatric diagnosis or to be used in contemporary research programs. This difficulty can be understood in light of the well-known tradeoff between reliability and validity. We argue, however, that with sufficient ingenuity, phenomenological concepts can be adapted and applied in a research context. Elsewhere, we have described a phenomenologically oriented conception of schizophrenia as a self- or ipseity-disorder with (...) two main facets: decline in the sense of existing as a subject of awareness (diminished self-affection) and heightened awareness of aspects of experience that would normally remain tacit or presupposed (hyperreflexivity). This approach is consistent with Minkowski, Blankenburg, and Kimura and offers one possible synthesis of their views. Here we describe two areas of empirical research that are congruent with, or actually inspired by, a phenomenological approach emphasizing such disorders of consciousness and self-experience: (1) Phenomenologically oriented, interview studies show that, whereas negative-symptom patients generally deny any diminishment of affect and thinking, they do describe qualitative alterations of experience suggestive of hyperreflexivity and diminished self-affection. (2) Another line of research suggests that the early detection of schizophrenic symptoms may be enhanced by adopting a phenomenological approach. (shrink)

The doctrine of clinical equipoise is appealing because it appears to permit physicians to maintain their therapeutic obligation to offer optimal medical care to patients while conducting randomized controlled trials (RCTs). The appearance, however, is deceptive. In this article we argue that clinical equipoise is defective and incoherent in multiple ways. First, it conflates the sound methodological principle that RCTs should begin with an honest null hypothesis with the questionable ethical norm that participants in these trials should never be randomized (...) to an intervention known to be inferior to standard treatment. Second, the claim that RCTs preserve the therapeutic obligation of physicians misrepresents the patient-centered orientation of medical care. Third, the appeal to clinical equipoise as a basic principle of risk-benefit assessment for RCTs is incoherent. Finally, the difficulties with clinical equipoise cannot be resolved by viewing it as a presumptive principle subject to exceptions. In the final sections of the article, we elaborate on the non-exploitation framework for the ethics clinical research and indicate issues that warrant further inquiry. (shrink)

Background: For an effective treatment of patients, quality-assured safe implementation of drug therapy is indispensable. Fasting during Ramadan, an essential religious practice for Muslims, affects Muslim diabetics’ drug use in a number of different ways. Objectives: Ethical problems arising from fasting during the month of Ramadan for practicing Muslim patients are being discussed on the basis of extant research literature. Relevant conflicts of interest originating in this situation are being analysed from an ethical perspective. Material and methods: A number (...) of databases have been searched systematically in view of the stated objectives to identify relevant studies. Starting point for this review are the following questions: What information is available regarding the fasting behaviour of Muslim diabetics during Ramadan? What kind of ethical problems can be identified in the context of this religious practice? Results: The present review established a number of problems concerning medication adherence and drug use of practising Muslim diabetics during Ramadan, notably insufficient compliance, reduced frequency of consultations with their doctor, and inadequate, not sufficiently goal-oriented doctor-patient conversations about fasting. Conclusions: Deficiencies in medical as well as religious knowledge about fasting in Ramadan and a lack of sensitivity have been found among Muslim patients as well as among doctors. Compliance management and drug use in this area can be improved by effective, goal-oriented action plans and projects through which linguistic and cultural barriers can be addressed. (shrink)

Research on doctor-patient communication has characterized such interactions as being asymmetrical. The present article tries to shift emphasis away from the different orientations individuals bring to the communicative setting and attempts to highlight the different orientations ("voices") within a given individual. We draw on an in-depth analysis of discourse between a 2 l-year-old man who can be ascribed the roles of both patient and potential research subject and an interviewer who acts in both the role of (...) medical staff and researcher. Focusing our analysis on a limited number of linguistic forms (pronouns and demonstratives), it is argued that the use of the same form for different referents signals a conflation of two voices - the voice of health care ("caring") and the voice of "research." Furthermore, we argue that the voice of research is most likely to be interpreted by the patient/research subject within the framework of curing. As such, the present article promotes a shift in emphasis from different institutional - and as such often assumed to be preexisting - orientations between the communicating parties to differing orientations within the individual that cannot help but be misconstrued in terms of the curing voice. Our conclusion focuses on the ethical and discourse analytic implications of analyzing voices in a discussion. (shrink)

Count Me In (CMI) was launched in 2015 as a patient-driven research initiative aimed at accelerating the study of cancer genomics through direct participant engagement, electronic consent and open-access data sharing. It is an example of a large-scale direct-to-patient (DTP) research project which has since enrolled thousands of individuals. Within the broad scope of ‘citizen science’, DTP genomics research is defined here as a specific form of ‘top-down’ research endeavour developed and overseen by institutions (...) within the traditional human subjects research context; in novel ways, it engages and recruits patients with defined diseases, consents them for medical information and biospecimens sharing, and stores and disseminates genomic information. Importantly, these projects simultaneously aim to empower participants in the research process while increasing sample size, particularly in rare disease states. Using CMI as a case study, this paper discusses how DTP genomics research raises new questions in the context of traditional human subjects research ethics, including issues surrounding participant selection, remote consent, privacy and return of results. It aims to demonstrate how current research ethics frameworks may be insufficient in this context, and that institutions, institutional review boards and investigators should be aware of these gaps and their role in ensuring the conduct of ethical, novel forms of research together with participants. Ultimately, a broader question is raised of whether the rhetoric of participatory genomics research advocates for an ethic of personal and social duty for contributing to the advancement of generalisable knowledge about health and disease. (shrink)

Although spiritual practices such as prayer are engaged by many to support well‐being and coping, little research has addressed nurses and prayer, whether for themselves or facilitating patients' use of prayer. We conducted a qualitative study to explore how prayer (as a proxy for spirituality and religion) is manifest—whether embraced, tolerated, or resisted—in healthcare, and how institutional and social contexts shape how prayer is understood and enacted. This paper analyzes interviews with 21 nurses in Vancouver and London as a (...) subset of the larger study. Findings show that nurses' kindness can buffer the loneliness and exclusion of ill health and in this way support the “spirit” of those in their care. Spiritual support for patients rarely incorporated prayer, in part because of ambiguities about permission and professional boundaries. Nurses' engagement with prayer and spiritual support could become a politicized site of religious accommodation, where imposition, religious illiteracy, and racism could derail person‐centered care and consequently enact social exclusion. Spiritual support (including prayer) sustained nurses themselves. We propose that nursing's equity‐oriented knowledge encompass spirituality and religion as sites of exclusion and inclusion. Nurses must be supported to move past religious illiteracy to provide culturally and spiritually sensitive care with clarity about professional boundaries and collaborative models of spiritual care. (shrink)

Objective Analyze racial differences in comfort with medical research using an alternative to the traditional approach that treats white people as a raceless norm.Methods Quantitative analysis of survey responses (n = 1,570) from Black and white residents of the US to identify relationships between perceptions of research as a right or a risk, and comfort participating in medical research.Results A lower proportion of white respondents reported that medical experimentation occurred without patient consent (p < 0.001) and (...) a higher proportion of white respondents reported that it should be their right to participate in medical research (p = 0.02). Belief in one’s right to participate was significantly predictive of comfort (b = 0.37, p < 0.001). Belief in experimentation without consent was significantly predictive of comfort for white respondents but not for Black respondents in multivariable analysis.Conclusions A rights-based orientation and less concern about the risks of medical research among white respondents demonstrate comparative advantage. Efforts to diversify medical research may perpetuate structural racism if they do not (1) critically engage with whiteness and its role in comfort with participation, and (2) identify and respond specifically to the needs of Black patients. (shrink)

To ensure that the information resulting from research is relevant to patients, the Patient‐Centered Outcomes Research Institute eschews the “traditional health research” paradigm, in which investigators drive all aspects of research, in favor of one in which patients assume the role of research partner. If we accept the premise that patient engagement can offer fresh perspectives that shape research in valuable ways, then at least two important sets of questions present themselves. First, (...) how are patients being engaged—and how should they be engaged? Second, which patients are being engaged—and which patients should be? This set has received relatively less attention, and the neglect is surprising, given that the “who” question is conceptually prior to the question of “how.”This article focuses attention on the “who” of patient engagement in research. First, we provide background on the rationale for patient engagement, underscoring the importance of ensuring the representativeness of engaged patients. Second, we present what little is known about patients engaged in PCORI‐funded research. Third, we identify and discuss the ethical implications of ways in which current practices of patient identification and recruitment may lead to a lack of representativeness. These practices include reliance on the well‐connected and well‐informed, reliance on patients who are not well trained or well‐informed, and reliance on patient advocacy organizations. Finally, we consider several strategies for addressing these pitfalls in order to maximize the positive goals of patient engagement. Patient engagement is intended to address the inability of researchers, funders, and others to fully represent patient views and priorities, but without sufficient attention, the patients selected for this role may still leave important gaps. (shrink)

BackgroundIn this manuscript, we argue that within the context of phase IV, physician-researchers retain their fiduciary obligation to treat the patient-participants.DiscussionWe first clarify why the perspective that research ethics ought to be differentiated from clinical ethics is not applicable in phase IV, and therefore, why therapeutic orientation is most convivial in this phase. Next, assuming that ethics guidelines may be representative of common morality, we show that ethics guidelines see physician-researchers primarily as physicians and only secondarily as researchers. (...) We then elaborate on what a fiduciary obligation is and how some of the obligations are default duties. Lastly, we look at the fiduciary obligation of the physician-researcher in phase IV interventional trials.ConclusionThe fiduciary obligation to treat is not as easily waived as in earlier trials. Assuming the entwinement of research and practice in phase IV, physician-researchers, in collaboration with other researchers, investigators, and research ethics committees, should ensure that in terms of study design, methodology, and research practice, the therapeutic value of the research to the patient-participants is not diminished. (shrink)

This study explored drug users’ attitudes toward and understanding of randomized controlled trials testing addiction therapies. A video portraying a fictional consent conference for a randomized controlled trial with placebo arm was shown to poor male and female drug users of diverse ethnic status and sexual orientation. The video stimulated focus group discussion in which participants’ comments often reflected “experimental realism”—a realistic view of the trial—and adequate understanding of the uncertain efficacy of the treatment being tested, as well as the (...) concepts of randomization and placebo control. However, participants’ comprehension of the nature of placebos was compromised by the widespread view that placebos are a way of testing a subject’s willpower and personal control over his or her addiction. Comments also showed a mistrust of the video investigator’s integrity and competence and signs of therapeutic misconception and misestimation. The study’s findings underscore the importance of tailoring informed consent encounters to the personal and sociohistorical context of participants’ lived experiences. (shrink)

In clinical research there is a tension between the role of a doctor, who must serve the best interests of the patient, and the role of the researcher, who must produce knowledge that may not have any immediate benefits for the research participant. This tension is exacerbated in HIV research in low and middle income countries, which frequently uncovers comorbidities other than the condition under study. Some bioethicists argue that as the goals of medicine and those (...) of research are distinct, it is a mistake for researchers to assume therapeutic responsibilities while engaging in research. Others propose that there is a duty of care, but disagree as to how this is limited and specified. In this qualitative study, principal investigators from HIV prevention trials discuss their experience of providing medical benefits to participants within the context of conducting research into HIV biomedical prevention technologies. They describe the limitations imposed at times by funders and at times by infrastructure constraints, and canvass the importance of ancillary care provision and capacity building in trial communities. The views of the principal investigators are compatible with the perspective that there is a duty of care, limited by the nature of the research, the depth of the relationship between research and participant, and the capacity of the research site. The therapeutic orientation in HIV prevention trial appears to be indivisible from competent research practise by making concrete and appropriate benefits available to trial participants and their communities that support rather than compete with local infrastructure. (shrink)

Health-related quality of life measures aim to assess patients’ subjective experience in order to gauge an increasingly wide variety of health care issues such as patient needs; satisfaction; side effects; quality of care; disease progression and cost effectiveness. Their popularity is undoubtedly due to a larger initiative to provide patient-centered care. The use of patient perspectives to guide health care improvements and spending is rooted in the idea that we must respect patients as self-determining agents. In this (...) paper I look at the two main orientations to quality of life measurement: standardized and individualized measures. I argue that while these measures are attempts to provide for patient self-determination, they both fail to do so. In their place I suggest a new approach which overcomes their respective difficulties: a dialogic approach. (shrink)

As Next Generation Sequencing technologies are increasingly implemented in biomedical research and care, the number of study participants and patients who ask for release of their genomic raw data is set to increase. This raises the question whether research participants and patients have a legal and moral right to receive their genomic raw data and, if so, how this right should be implemented into practice. In a first step we clarify some central concepts such as “raw data”; in (...) a second step we sketch the international legal framework. The third step provides an extensive ethical analysis which comprehends two parts: an evaluation of whether there is a prima facie moral right to receive one’s raw data, and a contextualization and discussion of the right in light of potentially conflicting interests and rights of the data subject herself and third parties; in a last fourth step we emphasize the main practical consequences of the ethical analyses and propose recommendations for the release of raw data. In several legislations like the new European General Data Protection Regulation, patients do in principle have the right to receive their raw data. However, the procedural implementation of this right and whether it involves genetic counselling is at the discretion of the Member States. Even more questions remain with respect to the research context. The ethical analysis suggests that patients and research subjects have a moral right to receive their genomic raw data and addresses aspects which are also of relevance for the legal discussion such as the costs of release of raw data and its impact on academic freedom. Taking into account the specific nature and implications of genomic raw data and the contexts of research and health care, several concerns and potentially conflicting interests of the data subjects themselves and involved researchers, physicians, biomedical institutions and relatives arise. Instead of using them to argue in favor of restrictions of the data subjects’ legal and moral right to genomic raw data, the concerns should be addressed through provision of information and other measures. To this end, we propose relevant recommendations. (shrink)

Mental illness stigma is imposed on patients in mental illness stigma mark, mainly referring to the disease and psychological stereotypes lead to the loss of social status and discrimination. Study confirmed the existence of stigma would prevent the patient's treatment and rehabilitation, stigma issues resulting widespread concern in the world health community, which is a hotspot of research on the impact of stigma. Labeling theory and theories of stigma affect the correct label for the analysis of the mechanism; (...) stigma of mental illness and related populations of the various effects can be measured in two ways: public stigma and self-stigma; protest, education and exposure is to reduce the stigma effective way. Chinese culture in the future to carry out the stigma of mental illness, should be closely combined with the stigma of traditional culture analysis of the impact mechanism, and should explore the feasibility of stigma strategies. Mental illness stigma is an ashamed mark attached to people with mental illness, which is the status loss and discrimination triggered by negative stereotypes about people labeled as having mental illness. Some researches have showed that stigma may impede the treating and rehabilitating process of clients. The effect of mental illness stigma is currently a hot subject of research. Labeling theory and modified labeling theory are both the theories of the mechanism of the effect of stigma. Researchers investigate the effects of stigma and the ways of diminishing it from two aspects: public- stigma and self-stigma. The future research orientations in China should be combined with culture analysis. (shrink)