In this paper we aim to discuss a theoretical explanation for the positive relationship between patients’ knowledge and their trust in healthcare personnel. Our approach is based on John Dewey’s notion of continuity. This notion entails that the individual’s experiences are interpreted as interrelated to each other, and that knowledge is related to future experience, not merely a record of the past. Furthermore, we apply Niklas Luhmann’s theory on trust as a way of reducing complexity and enabling action. (...) Anthony Giddens’ description and analysis of the high modern society provides a frame for discussing the preconditions for patient-healthcare personnel interaction. High modernity is dominated by expert systems and demands trust in these. We conclude that patient knowledge and trust in healthcare personnel is related because both knowledge and trust are future- and action-oriented concepts. The traits of high modernity provides opportunities and challenges as the personnel can and must perform discretion. This discretion must be made in a context where knowledge is considered uncertain and preliminary. (shrink)

A letter from Howard C. Berkowitz about “Impact of a Clinical Trials Information Handbook on Patient Knowledge, Perceptions, and Likelihood of Participation”.

Drug Safety Communications are used by the Food and Drug Administration to inform health care providers, patients, caregivers, and the general public about safety issues related to FDA-approved drugs. To assess patient knowledge of the messaging contained in DSCs related to the sleep aids zolpidem and eszopiclone, we conducted a large, cross-sectional patient survey of 1,982 commercially insured patients selected by stratified random sampling from the Optum Research Database who had filled at least two prescriptions for either (...) zolpidem or eszopiclone between July 1, 2012 and June 30, 2013. Among the 594 respondents, two-thirds reported hearing generally about drug safety information prior to starting a new drug, with the remaining one-third “rarely” or “never” hearing such information. Providers and pharmacists were primary sources of drug safety information. Two-thirds of zolpidem users and half of eszopiclone users reported having heard about the related DSC messages, ability to accurately identify the major factual messages was limited. Respondents reacted to new drug safety information about their sleep aids by reporting that they would want to learn about alternative ways to help them sleep and seek out more information about the safety of their specific sleeping pill. Opportunities may exist for the FDA to work with providers and pharmacies to help ensure the DSC information is more widely received and is more fully understood by those taking the affected medications. (shrink)

Science and technology studies concerned with the study of lay influence on the sciences usually analyze either the political or the normative epistemological consequences of lay interference. Here I frame the relation between patients, knowledge, and the sciences by opening up the question: How can we articulate the knowledge that patients develop and use in their daily lives and make it transferable and useful to others, or, `turn it into science’? Elsewhere, patient knowledge is analyzed either (...) as essentially different from or similar to medical knowledge. The category of experiential knowledge is vague and is used to encompass many types of experience, whereas the knowledge of the `expert patient’ may be assumed to have the shape of up-to-date medical information. This paper shows through a case study of people with severe lung disease that patient knowledge can be understood as a form of practical knowledge that patients use to translate medical and technical knowledge into something useful to their daily life with disease. Patients coordinate this with homegrown know-how and advice from fellow patients, weighing different values - of which `taking good care of one’s body’ is but one - that may conflict in a specific situation. These practices result in sets of techniques that may be made useful to others. The paper argues for two alternatives to state-of-the-art medical research to turn patient knowledge into science: ethnographies of knowledge practices and the collection and making accessible of techniques. (shrink)

Aim:This study explores experiences of patients suffering from Korsakoff’s syndrome. It contributes to improved reflection on the value of patient knowledge.Background:An ethics of care perspective states the importance of moving to patients in their vulnerable state of being, and to figure out patients’ individual needs necessary to provide good care. The information given by patients suffering from Korsakoff’s syndrome might be mistaken, invented and even not true. The value of these patients’ experiences and knowledge had not been (...) researched to date.Method:Data from six in-depth interviews were analysed concurrently through the constant comparative method.Ethical considerations:The principles of voluntariness, confidentiality and anonymity were respected during the research process.Findings:Four important themes within patients’ knowledge emerged: health condition, involuntary admission into the nursing home, the daily routine and interpretation of the caring abilities of healthcare professionals. The findings show that our respondents were able to provide a window into their inner perspective.Conclusion:This study deepens our understanding of the value of patient knowledge in situations where patients see the world in a different manner as do healthcare professionals. The conversations revealed personal subjective knowledge which our respondents create and live by. Healthcare professionals are encouraged to discover and affirm the understandings of these patients, and not be prepossessed due to the diagnosis or general nursing home rules. Understanding patients’ unique knowledge through appreciation of the complexity and richness of different views on the situation can assist to give a more humane response to individual needs and pain. Health staff in healthcare institutions are encouraged to evaluate the – unintended – effect of rigidly applied nursing home rules, and the government is challenged to rethink its policy about care, and provide more resources permitting relational care that nurtures the dignity of patients suffering from Korsakoff’s syndrome. (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)

A survey on the knowledge and attitudes towards the Austrian organ donation legislation (an opt-out solution) of selected groups of the Austrian population taking into account factors such as age, gender, level of education, affiliation to healthcare professions and health related studies was conducted.

Biobanking is a relatively new concept in Egypt. Building a good relationship with different stakeholders is essential for the social sustainability of biobanks. To establish this relationship, it is necessary to assess the attitude of different groups towards this concept. The objective of this work is to assess the knowledge, attitude, and opinions of Egyptian patients towards biobanking issues. We designed a structured survey to be administered to patients coming to the outpatient clinics in 3 university hospitals in Egypt. (...) The survey included questions estimating the level of knowledge about the term “Biobank”, together with questions about the attitudes and opinions about related issues. Two hundred and fifty-nine patients participated in the survey. Eighty-one percent of participants reported that they never heard about the term before. About 85% expressed that they would be willing to donate their samples for research and about 87% thought that sample donation did not contradict their religious beliefs. Fifty eight percent were willing to participate in a genetic research project, 27.8% supported sharing their sample with pharmaceutical companies, and 32.4% agreed to share their samples with institutions abroad. Although there is limited knowledge about biobanking among Egyptian patients, many had a positive attitude towards sample donation and didn’t show religious concerns against it. However, they showed concerns regarding participation in genetic research and with sharing their samples across borders or with pharmaceutical companies. Public education about biobanking is possible, taking into consideration the specific cultural and legal framework in Egypt. (shrink)

BackgroundRespecting patients’ confidentiality is an ethical and legal responsibility for health professionals and the cornerstone of care excellence. This study aims to assess health professionals’ knowledge, attitudes, and associated factors towards patients’ confidentiality in a resource-limited setting.MethodsInstitutional based cross-sectional study was conducted among 423 health professionals. Stratified sampling methods were used to select the participants, and a structured self-administer questionnaire was used for data collection. The data was entered using Epi-data version 4.6 and analyzed using SPSS, version 25. Bi-variable (...) and multivariable binary logistic regression analyses were used to measure the association between the dependent and independent variables. Odds ratio with 95% confidence intervals and P value was calculated to determine the strength of association and to evaluate statistical significance.ResultOut of 410 participants, about 59.8% with [95% CI (54.8–68.8%)] and 49.5% with [95% CI (44.5–54.5%)] had good knowledge and favorable attitude towards patents confidentiality respectively. Being male (AOR = 1.63, 95% CI [1.03–2.59]), taking training on medical ethics (AOR = 1.73, 95% CI = [1.11–2.70]), facing ethical dilemmas (AOR = 3.07, 95% CI [1.07–8.79]) were significantly associated factors for health professional knowledge towards patients’ confidentiality. Likewise, taking training on medical ethics (AOR = 2.30, 95% CI [1.42–3.72]), having direct contact with the patients (AOR = 3.06, 95% CI [1.12–8.34]), visiting more patient (AOR = 4.38, 95% CI [2.46–7.80]), and facing ethical dilemma (AOR = 3.56, 95% CI [1.23–10.26]) were significant factors associated with attitude of health professionals towards patient confidentiality.ConclusionThe findings of this study revealed that health professionals have a limited attitude towards patient confidentiality but have relatively good knowledge. Providing a continuing medical ethics training package for health workers before joining the hospital and in between the working time could be recommended to enhance health professionals’ knowledge and attitude towards patient confidentiality. (shrink)

Background:Promoting patients’ rights is essential for defining the standards of clinical services within a country. Given their responsibilities, nurses can be the primary target for research to investigate the issue of patients’ rights within a healthcare system. As such, assessing the knowledge of nurses about patients’ rights is an essential step toward improving the quality of healthcare in limited resource settings like Sudan.Objectives:We aimed to assess the level of knowledge about patients’ rights among the nursing staff at Friendship (...) Teaching Hospital in Sudan.Methods:This hospital-based cross-sectional study was carried out at the Friendship Teaching Hospital in Sudan. We surveyed the totality of nurses (95) at the hospital using an amended survey. The data were analyzed in SPSS software using descriptive and inferential statistics.Ethical consideration:The study was approved by the Research Unit of Khartoum Ministry of Health and the Hospital administration. All respondents gave verbal consent prior to participating in the study.Results:Only 48.4% of the participants knew about the existence of the Sudanese Charter of patients’ rights. Nonetheless, our analysis found that 65.8% of nurses had acceptable level of knowledge (scored more than 75% of the total knowledge score) of patients’ rights, and none of the participant scored less than 50% of the total knowledge score. Finally, we found no statistical association between the knowledge score and demographic data, educational level, whether the participant knows about the existence of the Charter or not and a number of other factors.Conclusion:Nurses’ lack of knowledge about the existence of the Sudanese Charter of patients’ rights adopted in 2009 rights confirms the need for further efforts by Ministry of Health to promote the document. Furthermore, further research is needed to investigate the disconnect between nurses’ lack of knowledge about the existence of the charter and their awareness of the rights within the charter as well as the actual implementation of rights. (shrink)

This study explored tacit knowledge based on an expert nurse's practice who cares for stroke patients by using the hermeneutic phenomenological approach. The participant (‘Ms. A’) was a nursing researcher and college faculty member involved in the education of advanced practice nurses; her specialty was stroke rehabilitation nursing. She was asked to describe the meaning and value she gained from her memorable nursing experiences. Four interviews—approximately 1 h each—were conducted, and the associated data were interpreted together with the participant (...) based on the method of interpretive circulation. Notably, the analysis was ended when a fusion of horizons was recognized. The participant recalled her nursing experiences based on six model cases. During the analysis, the following five elements were extracted: [belief in the ability of vulnerable people to survive]; [being together]; [respect for human dignity]; [preparedness to respond to and bear suffering together]; and [theoretical knowledge base approaches true understanding of patient experience]. Further, the nursing model—the Roy Adaptation Model—utilized by Ms. A in the process of recognizing humans as whole beings was deeply interpreted and implemented as a guideline for her implicit advanced practice. Moreover, her deep understanding and utilization of theoretical knowledge base also built the foundation for her implicit advanced practice. In conclusion, Ms. A's tacit knowledge and the elements support the process of tacit knowledge acquisition. Her narratives, hermeneutic attitude as an interpreter, and learning attitude throughout interaction with others will strongly help her knowledge development. We intend to continue the study with multiple participants and explore the structure of tacit knowledge possessed by advanced practitioners. Future endeavours will include the development of a tacit knowledge learning strategy. (shrink)

Subjective reports and theories about memory may have an influence on other beliefs and behaviours. Patients with schizophrenia suffer a wide range of deficits affecting their awareness of daily life, including memory. With the Metamemory Inventory in Adulthood we ascertained patients’ memory knowledge and thoughts about their own cognitive capacities and about several aspects of cognitive functioning: personal capacities, knowledge of processes, use of strategies, perceived change with ageing, anxiety, motivation and mastery. The participants’ ratings were correlated with (...) their intellectual, cognitive and psychiatric data. Patients felt they had a lower capacity and marginally lower mastery over their memory than comparison subjects. They reported less recourse to strategies, and higher levels of memory-related anxiety. However, their knowledge of basic memory processes, motivation to succeed, and perception of ageing effects were similar. So patients with schizophrenia do not suffer a general and non specific impairment of their metacognitive knowledge. (shrink)

Upon entering the examination room, Caitlyn encounters a woman sitting alone and in distress. Caitlyn introduces herself as the hospital ethicist and tells the woman, Mrs. Dennis, that her aim is to help her reach a decision about whether to perform an autopsy on her recently deceased husband. Mrs. Dennis begins the encounter by telling the ethicist that she has to decide quickly, but that she is very torn about what to do. Mrs. Dennis adds, “My sons disagree about the (...) autopsy.” As a standardized patient, a specialized actor, the woman playing Mrs. Dennis has already delivered the same opening lines several times to different learners practicing their clinical ethics consultation skills. An SP encounter is a simulated patient encounter used for educational purposes that requires the standardization of verbal and behavioral responses. In the encounter, the simulator, or “patient,” uses a scripted medical history to enable the learner to employ a certain skill, say, the ability to perform a neurological exam. The use of standardized patients in the evaluation of clinical skills has become a staple in medical education. To tackle the challenge of teaching clinical ethics consultation skills, we have incorporated SP encounters into the curriculum of the Bioethics Program of The Union Graduate College and the Icahn School of Medicine at Mount Sinai. SP encounters are incorporated into one of our onsite classes, the Onsite Clinical Ethics Practicum, and they are part of the capstone examination, which all of our graduates must complete successfully. The inclusion of simulated encounters into the curriculum is one way in which we equip our students with the core competencies specified by the American Society for Bioethics and Humanities Task Force for clinical ethicists. (shrink)

This integrative review aims to provide a synthesis of research findings of health-care professionals’ knowledge, attitudes and behaviours relating to patient capacity to consent to or refuse treatment within the general hospital setting. Search strategies included relevant health databases, hand searching of key journals, ‘snowballing’ and expert recommendations. The review identified various knowledge gaps and attitudinal dispositions of health-care professionals, which influence their behaviours and decision-making in relation to capacity to consent processes. The findings suggest that there (...) is tension between legal, ethical and professional standards relating to the assessment of capacity and consent within health care. Legislation and policy guidance concerning capacity assessment processes are lacking, and this may contribute to inconsistencies in practice. (shrink)

The goals of vascular composite allotransplantation for hand are to maximize functional status and psychosocial wellbeing and to improve quality of life. Candidates are carefully vetted by transplant programs through an extensive evaluation process to exclude those patients with contraindications and to select those that are most likely to attain functional or quality of life benefit from transplant. Patient choice for any treatment, however, requires that candidates be able to understand the risks, benefits, and alternatives before choosing to proceed. (...) This study aimed to understand patients’ knowledge and perceptions about treatment options for hand loss, including hand transplant. This study will be used to inform a standardized education approach and develop conversation aids for use by clinicians and patients throughout the treatment decision process. Ten individuals who had experienced hand amputation or had congenital limb loss were interviewed to better understand previous and current decisions about treatment, experiences in adjusting to their treatment, and perceptions about hand VCA. From this qualitative interview data, four findings emerged: knowledge and education around VCA as a treatment option; adaptation of individuals with limb loss; fear of risk associated with transplantation; issues of aging and overuse injuries to existing limbs. Results suggests that there is opportunity for expanding education about all treatment options for patients with new loss, long-term loss, and congenital limb loss. Establishing a baseline of knowledge about all options–prosthetics, rehabilitative strategies, and VCA—can help patients evaluate their values and goals of treatment. Issues associated with aging, including overuse and injury, and adaptability over the life course should be included in considerations about treatment choices. Data indicate the need for routinely assessing patient preferences about treatment choice so patients can plan for their future as they adapt and age and as technology for treatments change. To assure that thorough information is provided for current and future decision-making, education about treatment choices and selection procedures for VCA should be standardized. (shrink)

In 2013, in accordance with a provision in the Patient Protection and Affordable Care Act, the U.S. government began fining hospitals with “excessive” patient readmission rates. Those working to respond to this issue have identified discharge communication with patients as a critical component. In response to this exigency and to contribute to the conversation in the medical humanities about the field’s purview and orientation, this article analyzes studies of and texts about communication in health and medicine, ultimately arguing (...) that the on-going circulation of compliance rhetoric and assumptions has limited efforts to improve patient communication. The article, furthermore, considers that humanist ideals of agentic action, the patient-centered care movement’s emphasis on the patient, and biomedicine’s tendency to treat evidence-based knowledge as fixed and given may have combined to support a rationale for using patient adherence to treatment guidelines as metrics in measurement studies designed to identify effective communication strategies. Finally, the article proposes that those working in the medical humanities consider the value of interdisciplinary posthumanist scholarship—specifically, its treatment of agency and knowledge as emergent, distributed, and contingent—and its potential to transform or extend in productive ways the conversation about what constitutes effective communication with patients. (shrink)

INTRODUCTION[|]The practice of medicine has evolved from old approach, in which all decisions for the patient are taken by physician, to a new approach, which includes patients to the medical decision-making process and endorses informed consent of the patients. In addition to healthcare professionals and patients, parents or legal representatives are stakeholders in the informed consent process of children. The knowledge and attitudes of physicians and medical school students about the informed consent period in children are important for (...) the effectiveness of the medical intervention and the biopsychosocial development of children. In this study, it was aimed to understand involvement of medical students and physicians in the informed consent process of children and their level of knowledge on children's rights and their attitudes in daily clinical practice.[¤]METHODS[|]The study is a descriptive study and n = 150 participants, who were randomly selected from senior medical school students working in medical school campus or university hospital and physicians serving pediatric patients, were included to this study. Questionnaires were applied for the measurement of participants' socio-demographic characteristics, education on pediatric patient rights, and legal provisions. The data were evaluated using SPSS 20.00 software.[¤]RESULTS[|]Of participants, 62% (n = 93) were phase 6 medical students, while 29.33% (n = 44) were resident physicians and the rest were faculty members (8.67%; n = 13). The proportion of physicians, who didn't received training on child rights, was 80.7% (n = 46) and statistically significantly higher than medical students (49.45%; n = 45) (p <0.001). However, participants who were not educated about the children's rights stated with higher ratio (44.83%; n=65), that informed consent should be obtained before medical intervention from individuals under 18 years of age, when they are compared to the the participants who received education (20.69%; n=30) (p = 0,019). The majority of participants (59.5%; n = 88) find the intervention in individuals under the age of 18 years in emergencies without consent of legal representatives ethically and legally appropriate (p <0.001). The participants believe that it is ethically and legally appropriate to conduct an intervention on an individual under the age of 18 years without the legal representative (36. 7%; n=54) (p <0.001).[¤]DISCUSSION AND CONCLUSION[|]This study compared the levels of knowledge and attitudes of participants, who were previously trained in or didn't received any training about children's rights and informed consent of children. However, the quality of the training of the participants on children's rights, was not questioned. This study showed that education on children's rights does not significantly increase the level of legal knowledge on children's rights. Having well-designed a subject focused on this theme in medical deontology and ethics education can increase the knowledge levels and improve the attitudes of medical students. This study sheds light on the issues that need to be focused in the medical faculties and the trainings of physicians and showed lack of information and need for development of attitudes regarding children's rights and informed consent in children.[¤]. (shrink)

Purpose. The purpose of this study is to investigate how professionals learn from varying experiences with errors in health-care digitalization and develop and use negative knowledge and digital ignorance in efforts to improve digitalized health care. Design/methodology/approach. A two-year qualitative field study was conducted in the context of a public health-care organization working with digital patient communication. The data consisted of participant observation, semistructured interviews and document data. Inductive coding and a theoretically informed generation of themes were applied. (...) Findings. The findings show that both health-care and digital communication professionals learn through experiences with digital “rule-” and “knowledge-based” errors in patient communication and develop negative knowledge and awareness of digital ignorance. In their joint efforts, they use negative knowledge to “bend the rules” and to explore digital ignorance in efforts to improve patient communication. Originality/value. This study provides insight into the importance of collaboration between professionals with varying experience of errors in digitalizing patient communication. Such collaboration is required to acknowledge own shortcomings and create complementary negative knowledge to improve digital patient communication. This is particularly important when working with innovative digitalization in health care. (shrink)

Drug discovery traditionally has occurred behind closed doors in for-profit corporations hoping to develop best-selling medicines that recoup initial research investment, sustain marketing infrastructures, and pass on healthy returns to shareholders. Only corporate Pharma has the man- and purchasing-power to synthesize the thousands of molecules needed to find a new drug and to conduct the clinical trials that will make the drug legal. Against this view, individual physician-scientists have suggested that the promise of applied genomics work calls for a new (...) form of social organization in order to speed the generation and understanding of new therapeutics. Recent successes in open source drug discovery show it is possible to produce valuable, empirically adequate, and sustainable collective beliefs without secrecy, proprietary attitudes, initial cooperation from Pharma, or outsized monetary incentives. After reviewing and differentiating these successes, I diagnose the source of this healthy new epistemic strategy. (shrink)

Introduction Patients require an accurate knowledge about placebos and their possible effects to ensure consent for placebo-controlled clinical trials is adequately informed. However, few previous studies have explored patients’ baseline levels of understanding and knowledge about placebos. The present online survey aimed to assess knowledge about placebos among patients with a history of back pain. Design A 15-item questionnaire was constructed to measure knowledge about placebos. Additional questions assessed sociodemographic characteristics, duration and severity of back pain, (...) and previous experience of receiving placebos. Setting Participants recruited from community settings completed the study online. Results 210 participants completed the questionnaire. 86.7% had back pain in the past 6 months, 44.3% currently had back pain. 4.3% had received a placebo intervention as part of a clinical trial and 68.1% had previously read or heard information about placebos. Overall knowledge of placebos was high, with participants on average answering 12.07 of 15 questions about placebos correctly. However, few participants correctly answered questions about the nocebo effect and the impact of the colour of a placebo pill. Conclusions The findings identified key gaps in knowledge about placebos. The lack of understanding of the nocebo effect in particular has implications for the informed consent of trial participants. Research ethics committees and investigators should prioritise amending informed consent procedures to incorporate the fact that participants in the placebo arm might experience adverse side effects. (shrink)

Various kinds of user and patient involvement are spreading in healthcare in most Western countries. The purpose of this study is to critically assess the actual conditions for patients’ involvement in healthcare practice in Greenland and to point to possibilities for development. Patients’ perspectives on their own conduct of everyday life with illness and their possibilities for participation when hospitalized are examined in relation to the conditions in a hospital setting dominated by biomedical practice. On a theoretical level, it (...) is argued that the concept of ‘participation’ is preferable to the concept ‘involvement’ in healthcare. The study shows that there are several interconnected areas for development: the structural frames of hospital practice, including professionals’ possibilities for handling patient participation, and the agency of the patients conducting their everyday lives when hospitalized. Consequences of the biomedical hegemony are discussed in relation to WHO ́s broader approach to disease, illness and health and the still existing postcolonial traces of power and hierarchy. Finally it is argued that patient participation during hospitalization will promote the patients ́ conduct of everyday life, the cultural knowledge of the professionals, and the democratization of the healthcare sector. Such changes might be connected to a more encompassing democratic societal development – in Greenland as well as globally. (shrink)

Background:Maintaining patient’s dignity in intensive care units is difficult because of the unique conditions of both critically-ill patients and intensive care units.Objectives:The aim of this study was to uncover the cultural factors that impeded maintaining patients’ dignity in the cardiac surgery intensive care unit.Research Design:The study was conducted using a critical ethnographic method proposed by Carspecken.Participants and research context:Participants included all physicians, nurses and staffs working in the study setting. Data collection methods included participant observations, formal and informal interviews, (...) and documents assessment. In total, 200 hours of observation and 30 interviews were performed. Data were analyzed to uncover tacit cultural knowledge and to help healthcare providers to reconstruct the culture of their workplace.Ethical Consideration:Ethical approval for the study from Ethics committee of Isfahan University of Medical Sciences was obtained.Findings:The findings of the study fell into the following main themes: “Presence: the guarantee for giving enough attention to patients’ self-esteem”, “Instrumental and objectified attitudes”, “Adherence to the human equality principle: value-action gap”, “Paternalistic conduct”, “Improper language”, and “Non-interactive communication”. The final assertion was “Reductionism as a major barrier to the maintaining of patient’s dignity”.Discussion:The prevailing atmosphere in subculture of the CSICU was reductionism and paternalism. This key finding is part of the biomedical discourse. As a matter of fact, it is in contrast with dignified care because the latter necessitate holistic attitudes and approaches.Conclusion:Changing an ICU culture is not easy; but through increasing awareness and critical self-reflections, the nurses, physicians and other healthcare providers, may be able to reaffirm dignified care and cure in their therapeutic relationships. (shrink)

Research on the capacity to understand others' minds has tended to focus on representations ofbeliefs,which are widely taken to be among the most central and basic theory of mind representations. Representations ofknowledge, by contrast, have received comparatively little attention and have often been understood as depending on prior representations of belief. After all, how could one represent someone as knowing something if one does not even represent them as believing it? Drawing on a wide range of methods across cognitive science, (...) we ask whether belief or knowledge is the more basic kind of representation. The evidence indicates that nonhuman primates attribute knowledge but not belief, that knowledge representations arise earlier in human development than belief representations, that the capacity to represent knowledge may remain intact in patient populations even when belief representation is disrupted, that knowledge (but not belief) attributions are likely automatic, and that explicit knowledge attributions are made more quickly than equivalent belief attributions. Critically, the theory of mind representations uncovered by these various methods exhibits a set of signature features clearly indicative of knowledge: they are not modality-specific, they are factive, they are not just true belief, and they allow for representations of egocentric ignorance. We argue that these signature features elucidate the primary function of knowledge representation: facilitating learning from others about the external world. This suggests a new way of understanding theory of mind – one that is focused on understanding others' minds in relation to the actual world, rather than independent from it. (shrink)

This book explores patient safety themes in developed, developing and transitioning countries. A foundation premise is the concept of 'reverse innovation' as mutual learning from the chapters challenges traditional assumptions about the construction and location of knowledge. This edited collection can be seen to facilitate global learning. This book will, hopefully, form a bridge for those countries seeking to enhance their patient safety policies. Contributors to this book challenge many supposed generalisations about human societies, including consideration of (...) how medical care is mediated within those societies and how patient safety is assured or compromised. By introducing major theories from the developing world in the book, readers are encouraged to reflect on their impact on the patient safety and the health quality debate. The development of practical patient safety policies for wider use is also encouraged. The volume presents a ground breaking perspective by exploring fundamental issues relating to patient safety through different academic disciplines. It develops the possibility of a new patient safety and health quality synthesis and discourse relevant to all concerned with patient safety and health quality in a global context. (shrink)

The importance of patients taking an active role in their healthcare is recognized internationally, to improve safety and effectiveness in practice. There is still, however, some ambiguity about the conceptualization of that patient role; it is referred to interchangeably in the literature as engagement, involvement, and participation. The aim of this discussion paper is to examine and conceptualize the concepts of patient engagement, involvement, and participation within healthcare, particularly nursing. The concepts were found to have semantic differences and (...) similarities, although, from a nursing perspective, they can be summoned to illustrate the establishment of a mutual partnership between a patient and a nurse. The individualization of such processes requires the joint effort of engagement, involvement, or participation, represented by interactive actions of both the patient (asking questions, telling/speaking up, knowledge acquisition, learning, and decision‐making) and the nurse (recognizing, responding, information sharing, teaching, and collaborating). Suggesting that the concepts can be used interchangeably comes with some caution, requiring that nurses embrace patients playing a role in their health and healthcare. Further research and practice development should focus on how patients and nurses receive and respond to each other to establish patient engagement, involvement, and participation. (shrink)

Background On December 2017 the Italian Parliament approved law n. 219/2017 “Provisions for informed consent and advance directives” regarding challenging legal and bioethical issues related to healthcare decisions and end-of life choices. The law promotes the person’s autonomy as a right and provides for the centrality of the individual in every scenario of health care by mean of three tools: informed consent, shared care planning and advance directives. Few years after the approval of the law, we conducted a survey among (...) physicians working in four health care facilities specific for the care of people suffering from psychiatric disorders, cognitive disorders and dementia located in the North of Italy aiming to investigate their perceived knowledge and training need, attitudes regarding law n. 219/2017 provisions, and practices of implementation of the law. Methods A semi-structured questionnaire was developed on an online platform. The invitation to participate in the survey was sent by email to the potential participants. Information was collected by means of the online platform (Google Forms) which allows to export data in a spreadsheet (Windows Excel) to perform basic statistical analysis (frequency distributions, bar chart representation). Results Twenty-five out of sixty physicians participated in the survey. None of the respondents value their knowledge of the law as very good, 10 good, 13 neither poor nor good, 1 poor and 1 very poor. All the respondents want to learn more about the law (21 yes and 4 absolutely yes). The majority of respondents agrees with the content of the law as a whole (3 absolutely agree, 13 agree), and on each provision. The question on the clarity of the concept of capacity in the law received mixed answers and this impacted on the physicians’ opinion regarding the legitimacy in principle for our groups of patients to realize shared care planning and write advance directives. Thirteen physicians neither introduced the theme of shared care planning nor arranged for shared care planning and the main reason for this was that no patient was in a clinical situation to require it. When shared care planning is realized, a variability in terms of type and number of meetings, mode of tracking and communication is registered. Conclusions Our survey results indicate a need for more clarity regarding the interpretation and implementation of the law in the patient groups under study. There are in particular two related areas that deserve further discussion: (1) the question of whether these patient groups are in principle legitimized by the law to realize shared care planning or write advance directives; (2) the notion of capacity required by the law and how this notion can be declined in real-life situations. (shrink)

Canadian and American population-based research concerning sexual and/or gender minority populations provides evidence of persistent breast and gynecologic cancer-related health disparities and knowledge divides. The Cancer's Margins research investigates the complex intersections of sexual and/or gender marginality and incommensurabilities and improvisation in engagements with biographical and biomedical cancer knowledge. The study examines how sexuality and gender are intersectionally constitutive of complex biopolitical mappings of cancer health knowledge that shape knowledge access and its mobilization in health and (...) treatment decision-making. Interviews were conducted with a diverse group of sexual and/or gender minority breast or gynecologic cancer patients. The LGBQ//T2 cancer patient narratives we have analyzed document in fine grain detail how it is that sexual and/or gender minority cancer patients punctuate the otherwise lockstep assemblage of their cancer treatment decision-making with a persistent engagement in creative attempts to resist, thwart and otherwise manage the possibility of discrimination and likewise, the probability of institutional erasure in care settings. Our findings illustrate the demands that cancer places on LGBQ//T2 patients to choreograph access to, and mobilization of knowledge and care, across significantly distinct and sometimes incommensurable systems of knowledge. (shrink)

Background Equitable care is a fundamental value in the nursing profession. Healthcare workers have both a moral and professional duty to ensure that they do not discriminate. Aim This study aimed to explore how patients perceive equitable nursing care. Research design, participants, and research context This descriptive phenomenological qualitative research study used purposeful sampling to select 17 patients from various departments of a general hospital in southern Iran. The participants were then interviewed using a semi-structured in-depth interview format, which aimed (...) to delve into their experiences with equitable nursing care. The collected data were analyzed using Colaizzi's seven-step method and MAXQDA20 software. Ethical considerations Oral and written information about the study was provided before the participants gave their written consent. The transcribed interviews were de-identified. The study was approved by the Ethics Committee of Jiroft University of Medical Sciences. Findings The data analysis of the study identified three main themes and six subthemes that were related to the experiences of patients with equitable nursing care. The first theme, equitable care, encompassed subthemes such as nurses’ dedicated efforts to facilitate patient recovery and adherence to ethical behavior. The second theme, unconscious causes of inequitable nursing care, included subthemes such as unintentional discrimination stemming from organizational constraints and unconscious biases resulting from a lack of knowledge and skills. The third theme, discriminatory care, comprised subthemes such as deliberate discrimination based on personal traits and selective discrimination. Conclusion The study findings indicate that achieving equitable nursing care requires a multifaceted approach. This includes effective hospital management, organizational reforms, and regulatory enhancements. Additionally, it is crucial to pay close attention to the needs of patients, enhance nurses’ theoretical and practical skills in providing equitable care, fostering a culture of equality within healthcare settings, and consider the personality dimensions and moral characteristics of nurses. (shrink)

Patients participating in the shared benefits of publicly funded health care enjoy the benefits of treatments tested on previous patients. Future patients similarly depend on treatments tested on present patients. Since properly designed research assumes that the treatments being studied are—so far as is known at the outset—equivalent in therapeutic value, no one is clinically disadvantaged merely by taking part in research, provided the research involves administering active treatments to all participants. This paper argues that, because no other practical or (...) moral considerations count decisively against so doing, we could and should oblige patients to agree to receive indicated treatment within the terms of any concurrent research protocols. This ensures their treatment will benefit not only themselves but also future patients through contributing to new knowledge. By analogy with the paying of income tax, patients should not be allowed to “veto” their social responsibility to take part in clinical research. (shrink)

This article focuses on patients' participation in decision‐making in meetings with healthcare professionals in a healthcare system, based on neoliberal regulations and ideas. Drawing on two constructed empirical cases, primarily from the perspective of patients, this article analyses and discusses the clinical practice around decision‐making meetings within a Foucauldian perspective. Patients' participation in decision‐making can be seen as an offshoot of respect for patient autonomy. A treatment must be chosen, when patients consult physicians. From the perspective of patients, there (...) is a tendency for healthcare professionals to supply the patients with the information that they think are necessary for them to make their own decision. But patients do not always want to be a ‘customer’ in the healthcare system; they want to be a patient, consulting an expert for help and advice, which creates resistance to some parts of the decision‐making process. Both professionals and patients are subject to the structural frame of the medical field, formed of both neoliberal framework and medical logic. The decision‐making competence in relation to the choice of treatment is placed away from the professionals and seen as belonging to the patient. A ‘projectification’ of the patient occurs, whereby the patient becomes responsible for his/her choices in treatment and care and the professionals support him/her with knowledge, preferences, and alternative views, out of which he/she must make his/her own choices, and the responsibility for those choices now and in the future. At the same time, there is a tendency towards de‐professionalization. In that light, participation of patients in decision‐making can be regarded as a tacit governmentality strategy that shapes the location of responsibility between individual and society, and independent patients and healthcare professionals, despite the basically desirable, appropriate, and necessary idea of involving patients in their own situations from a humanistic perspective. (shrink)

This book is a collection of papers presented at an interdisciplinary workshop at the Calgary Institute for the Humanities in May 1980. The three broad issues covered are: the physician-patient relationship, the allocation of responsibility among doctors and nurses, and the political and social framework of the health care system. The first set of essays is concerned with the moral and legal aspects of the physician-patient relationship. The link between knowledge and power is examined as well as (...) the moral dilemmas posed by medical technology. These initial essays would alone justify this publ. (shrink)

As physicians encounter an increasingly diverse patient population, socioeconomic circumstances, religious values and cultural practices may present barriers to the delivery of quality care. Increasing cultural competence is often cited as a way to reduce healthcare disparities arising from value and cultural differences between patients and providers. Cultural competence entails not only a knowledge base of cultural practices of disparate patient populations, but also an attitude of adapting one's practice style to meet patient needs and values. (...) Gender roles, relationship dynamics and boundaries are culture specific, and are frequently shaped by religious teachings. Consequently, religion may be conceptualised as a cultural repertoire, or dynamic tool-kit, by which members of a faith adapt and negotiate their identity in multicultural societies. The manner in which Islamic beliefs and values inform Muslim healthcare behaviours is relatively under-investigated. In an effort to explore the impact of Islam on the relationship between patients and providers, we present an Islamic bioethical perspective on cross-gender relations in the patient-doctor relationship. We will begin with a clinical scenario highlighting three areas of gender interaction that bear clinical relevance: dress code, seclusion of members of the opposite sex and physical contact. Next, we provide a brief overview of the foundations of Islamic law and ethical deliberation and then proceed to develop ethicolegal guidelines pertaining to gender relations within the medical context. At the end of this reflection, we offer some practice recommendations that are attuned to the cultural sensitivities of Muslim patient populations. (shrink)

Laura Specker Sullivan's article “Trust, Risk, and Race in American Medicine” is a philosophically grounded and highly practical call for medical professionals to take on the task of comprehending the sources of patients’ mistrust. This is not only a clinical competence but also a moral obligation, in particular, when mistrust is warranted—as with African American patients who rely on medical institutions that have breached and continue to breach the trust of their communities. While Specker Sullivan focuses on how clinicians can (...) signal comprehension once it has already been attained, I wish to step back and examine the nature of the efforts to gain knowledge. The effort to comprehend requires, at a minimum, the following actions: educating oneself about medical racism, examining one's implicit biases, and engaging, with empathic curiosity, with the patient or family members in the clinical encounter at hand. (shrink)