The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors’ manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients’ participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which patients, relatives (...) and caregivers acted differed in the respective variations; this seemed either to promote or to impede the patients’ opportunities of participating in the decision making. The possibility for participation seems to be context dependent and affected by many factors such as the dying patient’s personality, the social network, the availability of different forms of care, cultural values, and the extent to which nurses and other caregivers of the different forms of care can and want to support the wishes of the patients and relatives in the decision-making process. (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)

Objectives: To elicit the perceptions and preferences of patients with rheumatoid arthritis regarding information and participation in treatment decision-making. To analyse the patients’ narratives on the background of the ethical discourse on various approaches to treatment decision-making. Design: In-depth interviews with themes identified using principles of grounded theory. Participants: 22 patients with long-standing rheumatoid arthritis. Main outcome measures: Qualitative data on patients’ perceptions and preferences regarding information and participation in decision-making about treatment. (...) Results: Decision-making about treatment has been described by the patients as a process consisting of different stages with shifting loci of control and responsibility. Patients initially received one treatment recommendation and were not aware of alternative treatment options. Those participants in this study who wanted information about negative effects of a treatment cited “interest in one’s own health” and the potential “use of information” as reasons for their preference. The physicians’ expert knowledge and clinical experience regarding the effects of medication were cited as arguments by patients for a treatment recommendation. Conclusions: The patients’ accounts of decision-making about treatment differ from models of physician–patient relationship that have been put forward in ethical discourse. These differences may be relevant with respect to the starting point of an ethical analysis of treatment decision-making. Patients’ accounts with respect to a lack of information on treatment alternatives point to ethically relevant challenges regarding treatment decision-making in clinical practice. (shrink)

This research aims to study possible effects or impacts of COVID-19 in the context of a democratic organizational system analyzing how COVID-19 has influenced employees’ perception of their participation in decision-making and its impact on some psychological outcomes and emotions. COVID-19 has accelerated the process of implementation of new frameworks at work that have generated the modification of culture and employee management practices. Our hypothesis are, on the one hand, that COVID-19 has generated changes in participation (...) structures and internal communication mechanisms, having to make modifications not to deteriorate the perception of employees about their participation in decision making. On the other hand, COVID-19 has generated changes in the psychological outcomes and emotions of the employees. In the study, we analyze a cooperative belonging to the MONDRAGON cooperative group, where participation in decision-making and ownership is in its DNA. Through qualitative and quantitative methodologies, involving 42 employees, we investigate firstly, how COVID-19 has affected perceptions about participation in decision-making analyzing what role has played internal communication in these perceptions. Secondly, we investigate how COVID-19 has affected psychological outcomes and emotions. In this case, the perceptions arising from participation in decision-making focus on the assessment that participators make of the governance channels and the day-to-day meetings. Therefore, their appropriateness seems to be a key factor in the perception of participation in the COVID-19 era. Differences have been detected between the perceptions of blue and white collar employees. Such differences have also been founded in the psychological outcomes and emotions. Although this is a single case study, the analysis carried out provides elements of reflection to modify and restructure the decision-making and participation mechanisms, adapting them to the needs of blue and white collar employees in order to “guarantee” the expected outcomes. (shrink)

The promotion system in Chinese universities has been undergoing a reform since 2017. This study employed an online survey validated by confirmatory factor analysis with 372 Chinese teachers to investigate the extent to which they were empowered by the two practices of participation in decision-making and professional growth in the reform and level of their appraisal of and behavioral intentions toward the new promotion system. Structural equation modeling was used to measure how the two empowerment practices influenced (...) the teachers' appraisal of and behavioral intentions toward the new system. The findings suggest that the Chinese teachers had low participation in decision-making and medium institutional support for professional growth, relatively low nonmonetary cost-benefit appraisal and medium practicality and fairness appraisal of the new system, and relatively high behavioral intentions to increase efforts according to the new system. Besides, participation in decision-making had a significantly direct effect on practicality and nonmonetary cost-benefit appraisal. Professional growth had a significantly direct effect on practicality, fairness, and nonmonetary cost-benefit appraisal and behavioral intentions. Nonmonetary cost-benefit appraisal had a significantly direct effect on behavioral intentions. The implications are that, in promotion system reforms, the two empowerment strategies of shared decision-making and professional growth can help establish a new promotion system with high nonmonetary cost-benefits for teachers and raise teachers' behavioral intentions to develop and pursue promotion. They can also contribute to the formulation of a new promotion system that effectively evaluates individual teacher's achievements according to the characteristics of the specific university, teacher type, and discipline. This study had the limitations of using convenience sampling, collecting cross-sectional data through self-administered questionnaires, and reporting only teachers' side of the story. Therefore, it is recommended that future studies target both teachers and administrators, employ a mixed-method design, collect quantitative data through random sampling, and take a longitudinal view. (shrink)

Just as burnout is manifested through changes in behavioural and communication patterns, it is important to examine whether certain aspects of communication can affect student burnout development. Therefore, this study aims to investigate the relationship between communication and academic burnout. To achieve this, the study proposes an integrated model examining the effects of three communication dimensions – support from academic staff, support from colleagues, and participation in decision-making – on four different dimensions of academic burnout, as well (...) as students’ overall burnout. The model is tested using structural equation modelling (SEM) analysis. High coefficients of determination regarding particular burnout dimensions validate the strength of the proposed model. The results show that support from academic staff and support from fellow students significantly and negatively influence academic burnout, and might be instrumental in its reduction. Unexpectedly, participation in decision-making is shown to be positively related to academic burnout. (shrink)

The goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient. Surveys were statistically analysed by comparing physicians’ and parents’ perspectives and by evaluating factors associated with children’s actual involvement. Perspectives of ninety-one parents and twenty physicians were obtained for 151 children. Results indicate that for six aspects of (...) information provision examined, parents’ and physicians’ perceptions differed. Moreover, parents felt that the children were more competent to understand diagnosis and prognosis, assessed the disease of the children as worse, and reported higher satisfaction with decision-making on the part of the children. A patient’s age and gender predicted involvement. Older children and girls were more likely to be involved. In the decision-making process, parents held a less active role than they actually wanted. Physicians should take measures to ensure that provided information is understood correctly. Furthermore, they should work towards creating awareness for systematic differences between parents and physicians with respect to the perception of the child, the disease, and shared decision-making. (shrink)

Introduction: This study, the first of its kind in Iran, was to assess Iranian patients’ preferences for receiving information and participating in decision-making and to evaluate their satisfaction with how medical information is given to them and with their participation in decision-making at present. Method and materials: 299 of 312 eligible patients admitted to general internal medicine or surgery wards from May to December 2006 were interviewed according to a structured questionnaire. The questionnaire contained questions (...) about patients’ preferences regarding four domains of information and their participation in decision-making. Patients’ responses were measured on a visual analogue scale graded from 1 to 10. Results: The mean (SD) score for desire to receive information was 8.88 out of 10 (1.5) and for participation in medical decision-making was 7.75 out of 10 (3). The desire to receive information was greater in women than men (9.0 (1.5) vs 7.8 (1.4), p = 0.025). It was also correlated with their education (r = 0.2, p = 0.001) and their estimation of the severity of their own disease (r = 0.13, p = 0.027). The score for preference to participate in decision-making was higher in women than in men (7.95 (2.8) and 7.0 (3.2), respectively; β = 0.8, p = 0.022) and was negatively correlated with education (r = −0.14, p = 0.015). Discussion: This study shows that Iranian patients are highly interested in receiving information about their condition and participating in clinical decision-making. No predictive variable for such attitudes was found; therefore, the only way for the physician to recognise patients’ desire is to ask them explicitly. (shrink)

The discrepancy between measures of preferred and actual participation in decision making was used as a measure of ecological dissonance for an organization and then used to assess its relationship to job satisfaction, job involvement, job alienation, and job formalization. Questionnaires were administered to 143 faculty and staff members of Mississippi State University. Correlational analyses indicated mild relationships between the measures of ecological dissonance and job satisfaction, job involvement, job alienation, and job formalization, thus providing support for (...) ecological dissonance theory (see Miller, Topping, & Wells-Parker, 1989). It was concluded that ecological dissonance in participation in decision making was a predictor of workers’ job satisfaction, job involvement, job alienation, and job formalization. (shrink)

Motivations and decision-making styles that influence participation in biomedical research vary across study types, cultures, and countries. While there is a small amount of literature on informed consent in non-western cultures, few studies have examined how participants make the decision to join research. This study was designed to identify the factors motivating people to participate in biomedical research in a traditional Nigerian community, assess the degree to which participants involve others in the decision-making process, (...) and examine issues of autonomy in decision-making for research. A descriptive cross-sectional study was conducted with 100 adults (50 men, 50 women) in an urban Nigerian community who had participated in a biomedical research study. Subjects were interviewed using a survey instrument.Two-thirds of the respondents reported participating in the biomedical study to learn more about their illness, while 30% hoped to get some medical care. Over three-quarters (78%) of participants discussed the enrolment decision with someone else and 39% reported obtaining permission from a spouse or family member to participate in the study. Women were more than twice as likely as men to report obtaining permission from someone else before participating. More specifically, half of the female participants reported seeking permission from a spouse before enrolling. The findings suggest that informed consent in this community is understood and practised as a relational activity that involves others in the decision making process. Further studies are needed in non-Western countries concerning autonomy, decision-making, and motivation to participate in research studies. (shrink)

Twenty-four children (aged 5 months to 18 years) who were admitted to a university hospital were observed for a total of 135 hours with the aim of describing their degree of participation in decisions concerning their own care. Grading of their participation was made by using a 5-point scale. An assessment was also made of what was considered as optimal participation in each situation. The results indicate that children are not always allowed to participate in decision (...) making to the extent that is considered optimal. In no case was it judged that a child participated in or was forced to make a decision that was too difficult for the child. The interactions between children, parents and staff were also described in connection with discussions and decision-making processes. This showed that parents do not always support their children in difficult situations and that health care staff often inform children about what is going to happen without presenting alternatives or asking for their views. Staff may, however, find themselves facing an ethical conflict in deciding between supporting a child’s view or following hospital routine. It is of great importance that children are looked upon as potentially autonomous individuals and that staff members realize that one of their core duties is to facilitate children’s participation in decision making concerning their health care. (shrink)

Participation of end users in decision-making on science is increasingly practiced, as witnessed by the growing body of scientific literature on case evaluations. In the biomedical field, however, end-user participation in decision-making is rare. Some scholars argue that because patients are stakeholders and relevant experts, they could also provide important contributions to decision-making within the field of biomedical research. But what strategies could be used to effectively implement patient participation in (...) class='Hi'>decision-making on biomedical research? In this article, we analyze strategies for patient participation and conclude that these can hardly be regarded effective because they do not ensure patients' structural influence on decision-making. We identify obstacles for effective patient participation, which seem to reflect a resilience of the current biomedical decision-making network. We subsequently elaborate on the concept of transition management in the search for clues on how to breach this resilience and change the network toward the inclusion of patients. (shrink)

Citizens can be meaningfully involved in multiple phases of the urban planning process from decision-making to implementation via a dedicated online platform through which they can interact with planners and decision-makers. In historical contexts, local people are essential resources for decision-makers seeking critical local information needed for effective planning and intervention—including what those citizens recall from the past about the area’s social values and the built environment and what they imagine and hope for their neighborhood’s future. (...) This public knowledge, collected through storytelling and mapping, can play a fundamental role in shaping the framework for neighborhood rehabilitation plans. As a foundation for designing an online visual questionnaire to collect local knowledge and understand the views and expectations of local people, this study focuses on theoretical ideas to define a framework for an online visual questionnaire tool. The tool presented provides a common visual language that people can easily understand and use whatever their social class, education, or background. It also has the benefit of enabling citizens and planners to interact directly regardless of their geographical location. To proposing a framework for the online visual questionnaire, the first step was to review some existing visual tools and methods, including analog used for community engagement and digital used in urban planning to encourage and support public participation. Through an analysis of these methods, some important variables and criteria were identified that further our understanding of citizens’ perceptions of their neighborhoods. The next step, as part of a larger study, will be examining a historical public space, including a bazaar, hammam, and cistern—located in the historical context of Yazd— a central city in Iran registered as a cultural heritage site by UNESCO— as a case study with the larger goal of identifying some specific. (shrink)

Our objective is to understand how parents and children perceive their roles in decision making about research participation. Forty-five children (ages 4-15 years) with or without a chronic condition and 21 parents were the participants. A semistructured interview assessed perceptions of up to 4 hypothetical research scenarios with varying levels of risk, benefit, and complexity. Children were also administered the Peabody Picture Vocabulary Test, Third Edition, to assess verbal ability, as a proxy for the child's cognitive development. (...) The audiotaped interviews were transcribed and analyzed for themes related to parent and child decision-making roles. Both parents and children varied in their perceptions of decision-making roles. Child perceptions of parental influence on decision making as knowledge-based increased with cognitive development, whereas perceptions of parental influence as power-based decreased. Both children and parents commented that they would collaborate with each other when making decisions. Collaborative decision making appeared to increase with cognitive development. These findings suggest that approaches to child assent and parent permission should consider the parent-child relationship and how children and families typically make decisions. Future research is necessary to explain variation in the process of research decision making across children and families, explore the role of collaboration on children's decision-making skills, and understand developmental trajectories and mechanisms related to research decision making. (shrink)

Historically nurses have lacked significant input in end-of-life decision-making, despite being an integral part of care. Nurses experience negative feelings and moral conflict when forced to aggressively deliver care to patients at the EOL. As a result, nurses participate in slow codes, described as a limited resuscitation effort with no intended benefit of patient survival. The purpose of this study was to explore and understand the process nurses followed when making decisions about participation in limited resuscitation. (...) Five core categories emerged that describe this theory: (1) recognition of patient and family values at the EOL; (2) stretching time and reluctance in decision-making; (3) harm and suffering caused by the physical components of CPR; (4) nurse’s emotional and moral response to delivering aggressive care, and; (5) choosing limited resuscitation with or without a physician order. Several factors in end-of-life disputes contribute to negative feelings and moral distress driving some nurses to perform slow codes in order to preserve their own moral conflict, while other nurses refrain unless specifically ordered by physicians to provide limited care through tailored orders. (shrink)

As social scientists with overlapping expertise in children and youth studies, inequalities, and medical sociology, we value the development of practical tools that medical professionals can utiliz...

Background: Pediatric guidelines recommend that children and adolescents participate in a developmentally appropriate way in end-of-life decision making. Shared decision making in pediatrics is unique because of the triadic relationship of patient, parents, and physician. The involvement of the patient may vary on a continuum from no involvement to being the sole decision maker. However, the effects of child participation have not been thoroughly studied. The aims of this literature review are to identify studies (...) on end-of-life decision making in pediatrics, to explore patient participation, and to assess the effects of such participation. Methods: Five databases—PubMed, PsycInfo, Medline, CINAHL, and Sociological Abstract—were searched for empirical studies on end-of-life decision making in pediatrics. Selected articles fulfilling the criteria were assessed for type of decision, participants’ characteristics, reports on participation of the minor patient, and outcome. Results: Fifty-seven articles on end-of-life decision making in pediatrics were identified. The majority of papers (n = 43, 75%) investigated parents’ and clinicians’ perspectives, while only 14 articles (25%) included perspectives of children and adolescents. Twenty-two articles (39%) reported some details on various forms of children's participation (e.g., receive information, plan care details, consulted before or after a decision was made). Positive (e.g., respect for patient's preferences) and negative (e.g., conflict due to diverging opinions) effects of children's participation in end-of-life decision making were reported. Conclusions: This systematic review highlights the need for research to identify factors that contribute to a favorable participation of minors in decision-making processes, as well as strategies to solve possible conflicts. More research should take into account the dynamics in the triadic process of decision making and emphasize children and adolescents’ perspectives. A better understanding of how to meaningfully involve children and adolescents in end-of-life decision making could facilitate the practice of patient participation in pediatrics. (shrink)

Decision-making is an integral part of business meetings in an organization. Research has suggested that a participant’s engagement in the decision-making process has direct relevance to his or her role in the team or organization. This study extends the investigation of communicative behavior in decision-making to a special meeting setting where all participants assume similar organizational roles and where there is no designated chair. In particular, it draws on conversation analytic methods and a recently (...) developed framework of participant roles to examine discursive strategies and discourse roles on a moment-by-moment basis in the process of consensus negotiation. Findings show that participants’ choices of discursive strategies and the display of discourse roles vary as the discussion proceeds. A limited range of discursive strategies and discourse roles are identified when the discussion fails to lead to consensus. Our analysis also suggests that certain discourse roles appear to have a greater impact on reaching consensus decisions. (shrink)

The purpose of this study was to identify how older Korean people seek information and their desire to participate in decision making about their health care. A total of 165 elderly people living in Seoul, South Korea, participated in the study. Data were collected during individual interviews using the Autonomy Preference Index. The mean information-seeking score was high. The mean score for their desire to participate with a physician in decision making was lower, but this was (...) higher when family members were involved. The study indicates that many older people want to receive information about their health care. Families (or guardians), as well as older people themselves, should be included in the decision-making process. Nurses can encourage older people to express their wishes, while treating each individual with respect. (shrink)

Theoretical and practical trends of corporate citizenship indicate a deepening partnership between business and community. Following these developments, the article develops a model for the participation of businesses in decision-making processes as part of policy making and social-economic planning in the community. The article focuses on three levels: It examines the benefits and risks of such participation; identifies the typical dimensions of the participation processes; and finally, provides guidelines on how to develop a (...) class='Hi'>participation strategy based on the unique conditions of each business and community. (shrink)

When a child is hospitalized, the parents find themselves in an unfamiliar environment and their parental role changes. They are in a stressful and often anxiety-filled situation and it may be difficult for them to participate in decisions. The purpose of this study was to examine the extent to which parents participate in decisions during the course of events when their child is hospitalized. Thirty-five parents of 24 children (aged 5 months to 18 years) were followed by mobile observation during (...) their child’s hospitalization in a paediatric department in Sweden. Three researchers analysed field notes in three steps, using manifest and latent coding. In step 1, 119 situations that included a decision process were identified. In step 2, the situations were assessed according to a five-level scale concerning how the parents’ wishes, desires or values had been respected. In step 3, each situation was scrutinized with respect to factors influencing the extent of the parents’ participation. The results showed that parents have varying ability to be involved in decision making. Professionals need to communicate more openly with them in order to identify and satisfy their needs because some parents are unwilling or incapable of expressing them. (shrink)

Background: Hospices are based on a holistic approach which places the physical, psychological, social and spiritual welfare of their patients at the forefront of their work. Furthermore, they draw up their own mission statements which they are at pains to follow and seek to conduct their work in accordance with codes of ethics and standards of care. Research question and design: Our study researched what form the processes and degrees of latitude in decision-making take in practice when questions (...) of an ethical and ethically relevant nature arise. We used a qualitative approach. Data collection and evaluation was based on the methods of grounded theory. Ethical considerations: The study was reported to the relevant Ethics Commission who had raised no objections following the submission of the study protocol. The study at the hospices was approved by the directors of the hospices and the nursing teams. The rights of the participants were protected by obtaining informed consent. Results: Medication in the prefinal phase and questions affecting the provision of solids and liquids in the end-of-life phase have an ethical dimension. In the context of these two fields, decisions are taken collectively. A nurse’s individual (and ethically relevant) leeway in decision-making processes is restricted to the nurse’s own style of administering care. The nurse’s decision-making often depends to a far greater degree on her ability to adapt her concept of ideal care to fit the practical realities of her work than to any conceptual framework. Discussion: An adaptive process is necessary for the nurse because she is required to incorporate the four pillars of hospice care – namely, physical, psychological, social and spiritual care – into the practice of her daily work. Conclusion: Ethically relevant decisions are often characterised by nurses adjusting their aspiration levels to the practical conditions with which they are confronted. (shrink)

BackgroundInformed consent is a key element of ethical clinical research. Addicted population may be at risk for impaired consent capacity. However, very little research has focused on their comprehension of consent forms. The aim of this study is to assess the capacity of addicted individuals to provide consent to research.Methods53 subjects with DSM-5 diagnoses of a Substance Use Disorder and 50 non psychiatric comparison subjects participated in the survey from December 2014 to March 2015. This cross-sectional study was carried out (...) at a community-based Outpatient Treatment Center and at an urban-located Health Centre in Spain. A binary judgment of capacity/incapacity was made guided by the MacArthur Competence Assessment Tool for Clinical Research and a clinical interview. Demographics and clinical characteristics were assessed by cases notes and the Mini-Mental State Examination, the Global Assessment Functional Scale and the Clinical Global Impression Scale.ResultsNPCs performed the best on the MacCAT–CR, and patients with SUD had the worst performance, particularly on the Understanding and Appreciation subscales. 32.7 % SUD people lacked research-related decisional capacity. There were no statistically significant differences between the groups in terms of capacity to consent to research.ConclusionsThe findings of our study provide evidence that a large proportion of individuals with SUD had decisional capacity for consent to research. It is therefore inappropriate to draw conclusions about capacity to make research decisions on the basis of a SUD diagnosis. In the absence of advanced cognitive impairment, acute withdrawal or intoxication, we should assume that addicted persons possess decision-making capacity. Thus, the view that people with SUD would ipso facto lose decision-making power for research consent is flawed and stigmatizing. (shrink)

Stress and anxiety can both influence risk-taking in decision-making. While stress typically increases risk-taking, anxiety often leads to risk-averse choices. Few studies have examined both stress and anxiety in a single paradigm to assess risk-averse choices. We therefore set out to examine emotional decision-making under stress in socially anxious participants. In our study, individuals (N= 87) high or low in social anxiety completed an expanded variation of theBalloon Analogue Risk Task(BART). While inflating a balloon to a (...) larger degree is rewarded, a possible explosion leads to (a) a loss of money and (b) it is followed by an emotional picture (i.e., a calm vs. an angry face). To induce stress before this task, participants were told that they would have to deliver a speech. We operationalized risk-taking by the number of pumps during inflation and its functionality by the amount of monetary gain. In addition, response times were recorded as an index of decisional conflict. Without the stressor, high socially anxious compared to low socially anxious participants did not differ in any of the dependent variables. However, under stress, the low socially anxious group took more risk and earned more money, while high socially anxious individuals remained more cautious and did not change their risk-taking under social stress. Overall, high socially anxious individuals made their decisions more hesitantly compared to low socially anxious individuals. Unexpectedly, there were no main effects or interactions with the valence of the emotional faces. This data shows that stress affects socially anxious individuals differently: in low socially anxious individuals stress fosters risk-taking, whereas high socially anxious individuals did not alter their behavior and remained risk-averse. The noveleBARTis a promising research tool to examine the specific factors that influence decision-making. (shrink)

Objectives—To investigate the factors considered by staff, and the practicalities involved in the decision making process regarding the withdrawal or withholding of potential life-sustaining treatment in a children's hospital. To compare our current practice with that recommended by the Royal College of Paediatrics and Child Health guidelines, published in 1997.Design—A prospective, observational study using self-reported questionnaires.Setting—Tertiary paediatric hospital.Patients and participants—Consecutive patients identified during a six-month period, about whom a formal discussion took place between medical staff, nursing staff and (...) family regarding the withholding or withdrawal of potentially life-sustaining treatments. The primary physician and primary nurse involved in the discussion were identified.Method—Two questionnaires completed independently by the primary physician and nurse.Results—Twenty-two patients were identified . In 20 cases treatment was withdrawn or withheld, in two cases treatment was continued. Nursing staff considered family wishes and family perceptions of patient suffering as significantly more important factors in decision making than medical staff, who considered prognostic factors as most important. In only two cases were the patient's expressed wishes apparently available. In most cases staff considered the patient's best interests were served and the process would not be enhanced by the involvement of an independent ethics committee. The exceptions were those cases in which treatment was continued following disagreement between parties.Conclusions—Our current practice is consistent with that recommended by the RCPCH. The contribution of the patient, provision of staff counselling and general practitioner involvement were identified as areas for improvement. (shrink)

While today an often stated concern of development planning in the Third World is the participation of people in the decision-making process, in many cases the nature of popular participation in the planning process is generally limited in its jurisdictional scope and restricted in its application. This article explores perceptions of development professionals and local citizens regarding barriers and willingness to participate in decision making, local leadership, and local institutionalization processes across three types (state (...) agricultural universities, central research institutes, and nongovernmental organizations) of Farm Science Centers in eleven or ganizations in India. Findings suggest that willingness to participate may turn on reconciling competing institutional beliefs and working relationships. A strategy emphasizing cultural sensitively for enhancing local action relevant to agricultural and rural development practitioners is presented. (shrink)

Background: Decisions regarding whether or not to institute mechanical ventilation during the later stages of chronic obstructive pulmonary disease is challenging both ethically, emotionally and medically. Caring for these patients is a multifaceted process where nurses play a crucial role. Research question and design: We have investigated how nurses experienced their own role in decision-making processes regarding mechanical ventilation in later stages of chronic obstructive pulmonary disease and how they consider the patients’ role in these processes. We applied (...) a qualitative approach, with six focus-group interviews of nurses (n = 26). Ethical considerations: The Regional Committees for Medical and Health Research Ethics approved the study. Voluntary informed consent was obtained. Findings: The nurses found themselves operating within a cure-directed treatment culture wherein they were unable to stand up for the caring values. They perceived their roles and responsibilities in decision-making processes regarding mechanical ventilation to patients as unclear and unsatisfactory. They also experienced inadequate interdisciplinary cooperation. Discussion: Lack of communication skills, the traditional hierarchical hospital culture together with operating in a medical-orientated treatment culture where caring values is rated as less important might explain the nurses’ absence in participation in the decision about mechanical ventilation. Conclusion: To be able to advocate for the patients’ and their own right to be included in decision-making processes, nurses need an awareness of their own responsibilities. This requires personal courage, leadership who are capable of organising common interpersonal meetings and willingness on the part of the physicians to include and value the nurses’ participation in decision-making processes. (shrink)

This essay argues that individual-oriented informed consent is inadequate to protect human research subjects in mainland China. The practice of family-oriented decision-making is better suited to guide moral research conduct. The family’s role in medical decision-making originates from the mutual benevolence that exists among family members, and is in accordance with family harmony, which is the aim of Confucian society. I argue that the practice of informed consent for medical research on human subjects ought to remain (...) family-oriented in mainland China. This essay explores the main features of this model of informed consent and demonstrates the proper authority of the family. The family’s participation in decision-making as a whole does not negate or deny the importance of the individual who is the subject of the choice, but rather acts more fully to protect research subjects. (shrink)

Recent research indicates that angry facial expressions are preferentially processed and may facilitate automatic avoidance response, especially in socially anxious individuals. However, few studies have examined whether this bias also expresses itself in more complex cognitive processes and behavior such as decision making. We recently introduced a variation of the Iowa Gambling Task which allowed us to document the influence of task-irrelevant emotional cues on rational decision making. The present study used a modified gambling task to (...) investigate the impact of angry facial expressions on decision making in 38 individuals with a wide range of social anxiety. Participants were to find out which choices were (dis-) advantageous to maximize overall gain. To create a decision conflict between approach of reward and avoidance of fear-relevant angry faces, advantageous choices were associated with angry facial expressions, whereas disadvantageous choices were associated with happy facial expressions. Results indicated that higher social avoidance predicted less advantageous decisions in the beginning of the task, i.e., when contingencies were still uncertain. Interactions with specific skin conductance responses further clarified that this initial avoidance only occurred in combination with elevated responses before choosing an angry facial expressions. In addition, an interaction between high trait anxiety and elevated responses to early losses predicted faster learning of an advantageous strategy. These effects were independent of intelligence, general risky decision-making, self-reported state anxiety, and depression. Thus, socially avoidant individuals who respond emotionally to angry facial expressions are more likely to show avoidance of these faces under uncertainty. This novel laboratory paradigm may be an appropriate analog for central features of social anxiety. (shrink)

We evaluate the consistency of different constructs affecting risk attitude in individuals’ decisions across different levels of risk. Specifically, we contrast views suggesting that risk attitude is a single primitive construct with those suggesting it consists of multiple latent components. Additionally, we evaluate such constructs as sensitivity to losses, diminishing sensitivity to increases in payoff, sensitivity to variance, and risk acceptance (the willingness to accept probable outcomes over certainty). In search of trait-like constructs, the paper reviews experimental results focusing on (...) the consistency of these constructs in different tasks as well as their temporal consistency. Overall, the findings show that the most consistent factor is risk acceptance, and they also demonstrate its potential boundaries. These results are modeled with a simple quantitative index of subjective risk. A survey of decisions under risk further reveals that participants exhibit almost no consistency across different tasks in this setting, highlighting the advantage of experiential tasks for studying individual differences. (shrink)

Background Prioritization decision-making arises when nurses encounter intricate situations that demand ethically challenging judgments about care. This phenomenon has rarely been studied in nursing homes. Prioritization decision-making may lead to instances where individuals in social and healthcare may not receive all services they need. Making prioritization decisions and awareness of their consequences can increase nurses’ workload. Aim To describe prioritization decision-making regarding unfinished nursing care in nursing homes. Research design A qualitative descriptive study (...) conducted through individual theme interviews. Participants were recruited through social media. The data was analyzed using inductive content analysis. Participants and research context Nurses ( n = 23) working in nursing homes for the elderly people in Finland. Data were collected between June 2022 and February 2023. Ethical considerations Finnish legislation does not mandate an ethical review or research permits, as the participants took part as private individuals. [ask authors to make reference here to informed consent process and anonymity] Findings Nurses stated that the need for prioritization decision-making arises from challenges associated with nurses’ engagement with person-centered care, the culture of the work community, the burden due to workload and challenges associated with the leadership. Prioritization decision-making was based on the interests of residents, striving for an efficient workflow and nurse’s personal interests. Nurses did not receive support for decision-making regarding unfinished care, and protocols for prioritization had not been established in their work communities. Prioritization decision-making and unfinished care were concealed and left unspoken. Conclusion Nursing leaders should address this hidden phenomenon, making it visible through discussions with nurses and by involving them in the development of protocols. The findings can be utilized for developing new approaches to support nurses and reduce their workload and for enhancing the quality and person-centeredness of nursing care in nursing homes. (shrink)

Decision making for children who suffer abusive head trauma invokes multiple ethical considerations. The degree to which parents are permitted to participate in decision making after the injury has occurred is controversial. In particular, in this issue of The Journal of Clinical Ethics, Grigorian and colleagues raise concerns about the potential for conflict of interest in end-of-life decision making if the parents are facing criminal charges that could be escalated if the child dies. There (...) are additional concerns about the parents’ capacity to make decisions that are best for the child, given that the injury occurred. We argue that there are important reasons not to exclude parents from the decision-making process and that, with appropriate safeguards in place, parents are integral to determining what is best for the child. (shrink)

This chapter will discuss ethical issues connected with neuroscientific research on prisoners, focusing specifically on whether participating in such research should always be disregarded when making decisions about early release from prison. It was once routine in some jurisdictions for a prisoner’s participation in medical research to count as “good behaviour”, which could be given weight in decisions about early release. However, medical ethicists now widely regard this practice as ethically problematic, because prisoners might feel pressurised to participate (...) in medical research programmes by the desire to escape a coercive and harsh prison environment, and thus their agreement to take part in the programme might not satisfy the freedom requirement for valid consent. Yet, there may be a tension between traditional medical ethics and theories of punishment (a tension which also arises in other contexts at the interface between medicine and punishment). From the perspective of retributive or communication/reform-based theories of punishment, it might seem unfair for parole boards to disregard willingness to participate in medical research, if the prisoner were motivated by altruistic considerations. This altruism might indicate that the prisoner “deserves” a shorter sentence or may be a sign that the prisoner has reformed. This chapter will consider whether/how this tension between traditional medical ethics and penal theories can be resolved. For example, if the medical research involves relatively safe interventions such as fish oil pills or transcranial direct current stimulation (tDCS), then the above-mentioned worries about prisoners’ ability to provide free consent may be less pressing than if the risks of side-effects were greater. Furthermore, the validity of consent also seems to depend partly on whether the prison conditions are humane or excessively harsh. In addition, problems also arise in this context from within penal theories. Ironically, transparency about what factors will be taken into account in decisions about early release, which would presumably be encouraged by communication/reform theories, could raise the possibility that the prisoner was motivated to participate in the research programme by a desire for early release rather than altruism, thus making it harder to determine whether participation is a genuine sign of reform. (shrink)

The issue of the allocation of resources in health care is here to stay. The goal of this study was to explore the views of physicians on several topics that have arisen in the debate on the allocation of scarce resources and to compare these with the views of policy makers. We asked physicians and policy makers to participate in an interview about their practices and opinions concerning factors playing a role in decision making for patients in different (...) age groups. Both physicians and policy makers recognised allocation decisions as part of their reality. One of the strong general opinions of both physicians and policy makers was the rejection of age discrimination. Making allocation decisions as such seemed to be regarded as a foreign entity to the practice of medicine. In spite of the reluctance to make allocation decisions, physicians sometimes do. This would seem to be only acceptable if it is justified in terms of the best interests of the patient from whom treatment is withheld. (shrink)

Background: Research suggests that nurses generally do not participate in ethical decision-making in accordance with ethical guidelines for nurses. In addition to completing their training, nurses need to reflect on and use ethically grounded arguments and defined ethical values such as patient’s dignity in their clinical work. Objectives: The purpose of this article is to gain a deeper understanding of how nurses deal with ethical decision-making in daily practice. The chosen research question is “How do nurses (...) participate in ethical decision-making for the patient?” Design and method: We use Gadamer’s philosophical hermeneutics as well as Kvale and Brinkmann’s three levels of understanding in interpreting the data material. Nine registered nurses were interviewed. Ethical considerations: The Ombudsman of Norwegian Social Science Data and the head of the hospital approved the investigation. The participants received both oral and written information about the study and they gave their consent. We informed the participants that the participation was voluntary and that they were free to withdraw at any point in the course of the study. The requirement of anonymity and proper data storage was in accordance with the World Medical Association Declaration of Helsinki (1964). The participants were assured that privacy, and confidentiality would be duly protected. Results: Four key themes emerged: (1) confusion in relation to professional and operational expectations of role, (2) ideal somnolence, (3) inadequate argumentation skills, and (4) compound pressure. Conclusion: Ethical ideals appear to be latent in the mindset of the participants; however, the main finding of this investigation is that nurses need to activate the ideals and apply them into practice. Furthermore, management needs to initiate professional reasoning and interdisciplinary discussions leading to common goals for patients. (shrink)

Globally, women have more access to positions of authority and participate more in decision-making, regardless of context and rank, than a few years back. This is because of on-going global campaigns supported by various national and international laws and declarations. Increasingly, women have been exercising their rights and obligations to actively participate in politics and become visible in governance. Within Nigerian society, the efforts of women in governance, especially in the pre-colonial era, cannot be overlooked. Over the years, (...) women in Nigeria have moved from the back seat to the roles of bread-winners, decision-makers and leaders of their immediate families. Irrespective of these progressive developments, women's contributions to national development still have minor impact on decisions that affect society as a whole, due to the perceived marginalization which still holds strong in most developing countries like Nigeria. Cultural and social norms, glass ceiling effects, and other exclusionary factors continue to dictate relegation of the presence and voice of women to a lower rank in public life. Against this background, this paper attempts to shed light on the role of civil organizations in enhancing women's participation in politics and decision-making in governance issues in Nigeria. The paper examines strategies employed by a Muslim women civil organization in contributing to the decision-making that affect women generally in the society, and possible challenges facing women active participation in this political era. Using documented researched materials, the findings of the study show that women's intellectual, and political capabilities irrespective of the religious background, are vital components of every society. (shrink)

Background Reasonable disagreement about the role awarded to gamete donors in decision-making on the use of embryos created by gamete donation for research purposes emphasises the importance of considering the implementation of participatory, adaptive, and trustworthy policies and guidelines for consent procedures. However, the perspectives of gamete donors and recipients about decision-making regarding research with EGDs are still under-researched, which precludes the development of policies and guidelines informed by evidence. This study seeks to explore the views (...) of donors and recipients about who should take part in consent processes for the use of EGDs in research. Methods From July 2017 to June 2018, 72 gamete donors and 175 recipients completed a self-report structured questionnaire at the Portuguese Public Bank of Gametes. Agreement with dual consent was defined as the belief that the use of EGDs in research should be consented by both donors and recipients. Results The majority of participants were willing to donate embryos for research. Almost half of the donors and half of the recipients considered that a dual consent procedure is desirable. This view was more frequent among employed recipients than among non-employed. Donors were less likely to believe that only recipients should be involved in giving consent for the use of EGDs in research and were more frequently favourable to the idea of exclusive donors’ consent. Conclusions Divergent views on dual consent among donors and recipients indicate the need to develop evidence-based and ethically sustainable policies and guidelines to protect well-being, autonomy and reproductive rights of both stakeholder groups. More empirical research and further theoretical normative analyses are needed to inform people-centred policy and guidelines for shared decision-making concerning the use of EGDs for research. (shrink)

This paper explores management attitudes towards ethical issues in an attempt to shed some light on the determinants of ethical issue intensity in the context of business. A sample of business executives in Mauritius was surveyed in order to establish their ethical perceptions when exposed to potentially questionable business practices. The findings demonstrated the significant influence of factors associated with moral deliberations on strategies for ethical decision–making as compared with the impact of company policy and legal requirements. Participants (...) revealed that, irrespective of codes of conduct, personal ethics predominate when it comes to making ethical choices. Some view the behaviour of management as a key determinant of ethical conduct. This trend differs from predictions in the literature. To date, research conducted in the developed world shows that employee perception of ethics of their superiors is a stronger predictor of behaviour than employees’ personal ethical beliefs. This article focuses on Mauritius as an emerging economy, and looks at potential strategies for ethical decision–making, where business people do not necessarily operate under a specific code of conduct. (shrink)

Background Ensuring individual free and informed decision‐making for research participation is challenging. It is thought that preliminarily informing communities through ‘community sensitization’ procedures may improve individual decision‐making. This study set out to assess the relevance of community sensitization for individual decision‐making in research participation in rural Gambia. Methods This anthropological mixed‐methods study triangulated qualitative methods and quantitative survey methods in the context of an observational study and a clinical trial on malaria carried (...) out by the Medical Research Council Unit Gambia. Results/discussion Although 38.7% of the respondents were present during sensitization sessions, 91.1% of the respondents were inclined to participate in the trial when surveyed after the sensitization and prior to the informed consent process. This difference can be explained by the informal transmission of information within the community after the community sensitization, expectations such as the benefits of participation based on previous research experiences, and the positive reputation of the research institute. Commonly mentioned barriers to participation were blood sampling and the potential disapproval of the household head. Conclusion Community sensitization is effective in providing first‐hand, reliable information to communities as the information is cascaded to those who could not attend the sessions. However, further research is needed to assess how the informal spread of information further shapes people's expectations, how the process engages with existing social relations and hierarchies (e.g. local political power structures; permissions of heads of households) and how this influences or changes individual consent. (shrink)

Current approaches to professional ethics emphasise the importance of upholding the ethical duties of autonomy, beneficence, non-maleficence, and justice in practice. All are prima facie duties, meaning that they must be respected on their own and, if the duties conflict, it is assumed that the dilemma can be resolved through rational decision making. There are, however, a number of limitations to this approach to professional ethics. This paper explores these limitations through an empirical study that examined the ethical (...) dilemmas facing 24 professionals in their work with older people who were self-neglecting or living in squalor in Sydney, Australia. The research uncovered that two groups of professionals interpreted autonomy in different ways. Furthermore, when faced with difficult ethical dilemmas, participants agreed that the most satisfactory responses involved strategies that closely mirrored elements of alternative approaches to ethics, particularly the ethics of care and virtue ethics. The findings point to the relevance of a pluralistic approach to ethics in professional practice. (shrink)

Perelman and Olbrechts-Tyteca's practical reasoning theory has attracted a great deal of interest since its publication in 1969. Their most important assertion, however, that argument is the logical basis for practical decision-making, has been under-utilized, primarily because it was not sufficiently operationalized for research purposes. This essay presents an operationalization of practical reasoning for use in analyzing argument logics that emerge through group interaction. Particular elements of discourse and argument are identified as responding to principles put forward by (...) Perelman and Olbrechts-Tyteca, and are viewed as fitting together in a kind of logical argument structure that is well suited to the study of practical arguments in decision-making. Both the content elements and the logical argument structure are illustrated using examples from two studies examining decision logics in public participation and jury decision-making. Advantages of this approach and proposed recognition of a new `filtered' type of argument structure are discussed. (shrink)

Despite differences in their function and domain-specific elements, syntactic processing in music and language is believed to share cognitive resources. This study aims to investigate whether the simultaneous processing of language and music share the use of a common syntactic processor or more general attentional resources. To investigate this matter we tested musicians and non-musicians using visually presented sentences and aurally presented melodies containing syntactic local and long-distance dependencies. Accuracy rates and reaction times of participants’ responses were collected. In both (...) sentences and melodies, unexpected syntactic anomalies were introduced. This is the first study to address the processing of local and long-distance dependencies in language and music combined while reducing the effect of sensory memory. Participants were instructed to focus on language (language session), music (music session), or both (dual session). In the language session, musicians and non-musicians performed comparably in terms of accuracy rates and reaction times. As expected, groups’ differences appeared in the music session, with musicians being more accurate in their responses than non-musicians and only the latter showing an interaction between the accuracy rates for music and language syntax. In the dual session musicians were overall more accurate than non-musicians. However, both groups showed comparable behavior, by displaying an interaction between the accuracy rates for language and music syntax responses. In our study, accuracy rates seem to better capture the interaction between language and music syntax; and this interaction seems to indicate the use of distinct, however, interacting mechanisms as part of decision making strategy. This interaction seems to be subject of an increase of attentional load and domain proficiency. Our study contributes to the long-lasting debate about the commonalities between language and music by providing evidence for their interaction at a more domain-general level. (shrink)

Decision Making Competence (DMC) reflects individual differences in rational responding across several classic behavioral decision-making tasks. Although it has been associated with real-world risk behavior, less is known about the degree to which DMC contributes to specific components of risk attitudes. Utilizing a psychological risk-return framework, we examined the associations between risk attitudes and DMC. Italian community residents (n = 804) completed an online DMC measure, using a subset of the original Adult-DMC battery (A-DMC; Bruine de (...) Bruin, Parker, & Fischhoff, 2007). Participants also completed a self-reported risk attitude measure for three components of risk attitudes (risk-taking, risk perceptions, and expected benefits) across six risk domains. Overall, greater performance on the DMC component scales were inversely, albeit modestly, associated with risk-taking tendencies. Structural equation modeling results revealed that DMC was associated with lower perceived expected benefits for all domains. In contrast, its association with perceived risks was more domain-specific. These analyses also revealed stronger indirect effects for the DMC  expected benefits  risk-taking than the DMC  perceived risk  risk-taking path, especially for risk behaviors that may be considered more antisocial in nature. These results suggest that DMC performance differentially impacts specific components of risk attitudes, and may be more strongly related to the evaluation of expected value of the given behavior. (shrink)

Background: In order to fully understand nurses’ ethical decision-making in cases of physical restraint in acute older people care, contextual influences on the process of decision-making should be clarified. Research questions: What is the influence of context on nurses’ decision-making process in cases of physical restraint, and what is the impact of context on the prioritizing of ethical values when making a decision on physical restraint? Research design: A qualitative descriptive study inspired (...) by the Grounded Theory approach was carried out. Participants and research context: In total, 21 in-depth interviews were carried out with nurses working on acute geriatric wards in Flanders, Belgium. Ethical considerations: The research protocol was approved by the Ethics Committee of the Faculty of Medicine, Leuven. Findings: Relationships with nursing colleagues and the patient’s family form an inter-personal network. Nurses also point to the importance of the procedural–legal context as expressed in an institutional ethics policy and procedures, or through legal requirements concerning physical restraint. Furthermore, the architectural structure of a ward, the availability of materials and alternatives for restraint use can be decisive in nurses’ decision-making. All interviewed nurses highlighted the unquestionable role of the practical context of care. Context can have a guiding, supportive, or decisive role in decision-making concerning the application of physical restraint. Discussion: The discussion focuses on the role of the inter-personal network of nurses on the process of decision-making. Conclusion: An institutional ethics policy and a value-supportive care environment can support nurses in their challenge to take ethically sound decisions. (shrink)