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)

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)

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)

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)

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)

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 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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

Background: Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. Methods: This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 (...) sites in Canada (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Results: Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). Conclusions: AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials. (shrink)

In this paper, we report on the development and validity of the Professional Decision-Making in Research measure, a vignette-based test that examines decision-making strategies used by investigators when confronted with challenging situations in the context of empirical research. The PDR was administered online with a battery of validity measures to a group of NIH-funded researchers and research trainees who were diverse in terms of age, years of experience, types of research, and race. The PDR demonstrated adequate (...) reliability and parallel form correlation. As hypothesized, the PDR was significantly negatively correlated with narcissism, cynicism, moral disengagement, and compliance disengagement; it was not correlated with socially desirable responding. In regression analysis, the strongest predictors of higher PDR scores were low compliance disengagement, speaking English as a native language, conducting clinical research with human subjects, and low levels of narcissism. Given that the PDR was written at an eighth grade reading level to be suitable for use with English as a second language participants and that only one-fourth of items focused on clinical research, further research into the possible roles of culture and research ethics training across specialties is warranted. This initial validity study demonstrates the potential usefulness of the PDR as an educational outcome assessment measure and a research instrument for studies on professionalism and integrity in research. (shrink)

In the present study business managers in Kabi Pharmacia Company were trained in the use of the autonomous method in their decision-making about solving real life business ethics problems. According to the psychological theories of Piaget, Vygotsky, and Kohlberg, it is possible to promote the acquisition of the autonomous ethical skill by instruction and training. Indeed, participation in a one-day educational programme which focused on the training of the autonomous cognitive ability and not on the transfer of (...) moral content, was sufficient to provide a shift in the mode of decision-making about business ethics problems towards the autonomous ethical function. This change was still stable one month later. A test was constructed by items representing current business ethics conflicts in order to assess ethical function. (shrink)

In this paper, we report on the development and validity of the Professional Decision-Making in Research measure, a vignette-based test that examines decision-making strategies used by investigators when confronted with challenging situations in the context of empirical research. The PDR was administered online with a battery of validity measures to a group of NIH-funded researchers and research trainees who were diverse in terms of age, years of experience, types of research, and race. The PDR demonstrated adequate (...) reliability and parallel form correlation. As hypothesized, the PDR was significantly negatively correlated with narcissism, cynicism, moral disengagement, and compliance disengagement; it was not correlated with socially desirable responding. In regression analysis, the strongest predictors of higher PDR scores were low compliance disengagement, speaking English as a native language, conducting clinical research with human subjects, and low levels of narcissism. Given that the PDR was written at an eighth grade reading level to be suitable for use with English as a second language participants and that only one-fourth of items focused on clinical research, further research into the possible roles of culture and research ethics training across specialties is warranted. This initial validity study demonstrates the potential usefulness of the PDR as an educational outcome assessment measure and a research instrument for studies on professionalism and integrity in research. (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)

BackgroundThe participant recruitment process is a key ethical pivot point when conducting robust research. There is a need to continuously review and improve recruitment processes in research trials and to build fair and effective partnerships between researchers and participants as an important core element in ensuring the ethical delivery of high-quality research. When participants make a fair, informed, and voluntary decision to enroll in a study, they agree to fulfill their roles. However, supporting study participants to fulfill study requirements (...) is an important ethical obligation for researchers, yet evidenced as challenging to achieve. This paper reports on participants’ motivations to volunteer and remain part of a dietary study conducted in Kasungu District, Malawi.MethodsWe conducted twenty in-depth interviews (with chiefs, religious leaders, trial participants, and health surveillance assistants), five systematic ethnographic observations, and fourteen focus group discussions with trial participants and their partners. Interviews were audio-recorded and transcribed verbatim. We used a grounded theory methodology to analyse data that included coding, detailed memo writing, and data interpretation.FindingsThe findings reveal that many participants had concerns during the trial. Thematically, experiences included anxieties, mistrust of researchers, rumours, fears of exploitation, and misconceptions. Anonymous concerns collected from the participants were reported to the trial team which enabled the researchers to appropriately support participants. Despite initial concerns, participants described being supported and expressed motivation to take up their role.ConclusionThese findings highlight a diverse map of multiple notions of what is ethically relevant and what can impact participation and retention within a study. The study has revealed how embedding a responsive approach to address participants’ concerns and ethical issues can support trust relationships. We argue for the need to employ embedded ethics strategies that enhance informed consent, focus on participants’ needs and positive experiences, and support researchers to fulfill their roles. This work highlights the need for research ethics committees to focus on the risks of undue influence and prevent exploitation especially in settings with a high asymmetry in resources and power between researcher and participant groups.Trial Registration: The Addressing Hidden Hunger with Agronomy (Malawi) trial was registered on 5th March 2019 (ISCRTN85899451). (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)

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)

Background: Dementia care at home often involves decisions in which the caregiver must weigh safety concerns with respect for autonomy. These dilemmas can lead to situations where caregivers provide care against the will of persons living with dementia, referred to as involuntary treatment. To prevent this, insight is needed into how family caregivers of persons living with dementia deal with care situations that can lead to involuntary treatment. Objective: To identify and describe family caregivers’ experiences regarding care decisions for situations (...) that can lead to involuntary treatment use in persons living with dementia at home. Research design: A qualitative descriptive interview design. Data were analysed using the Qualitative Analysis Guide of Leuven. Participants and research context: A total of 10 family caregivers providing care for 13 persons living with dementia participated in in-depth semi-structured interviews. Participants were recruited by registered nurses via purposive sampling. Ethical consideration: The study protocol was approved by the Ethics Committee of the University Hospitals Leuven and the Medical Ethical Test Committee Zuyderland. Findings: Family caregivers experience the decision-making process concerning care dilemmas that can lead to involuntary treatment as complicated, stressful and exhausting. Although they consider safety and autonomy as important values, they struggle with finding the right balance between them. Due to the progressive and unpredictable nature of dementia, they are constantly seeking solutions while they adapt to new situations. Family caregivers feel responsible and experience social pressure for the safety of persons living with dementia. They may be blamed if something adverse happens to the persons living with dementia, which increases an already stressful situation. Their experience is influenced by characteristics of the care triad such as practical and emotional support, knowledge, and previous experiences. Discussion and conclusion: To prevent involuntary treatment, professionals need to proactively inform family caregivers, and they need to support each other in dealing with complex care situations. (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)

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)

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)

Informed decision-making (IDM) is considered an important ethical and legal requirement for population-based screening. Governments offering such screening have a duty to enable invitees to make informed decisions regarding participation. Various views exist on how to define and measure IDM in different screening programmes. In this paper we first address the question which components should be part of IDM in the context of cancer screening. Departing from two diverging interpretations of the value of autonomy—as a right and (...) as an ideal—we describe how this value is operationalized in the practice of informed consent in medicine and translate this to IDM in population-based cancer screening. Next, we specify components of IDM, which is voluntariness and the requirements of disclosure and understanding. We argue that whereas disclosure should contain all information considered relevant in order to enable authentic IDM, understanding of basic information is sufficient for a valid IDM. In the second part of the paper we apply the capability approach in order to argue for the responsibility of the government to warrant equal and real opportunities for invitees for IDM. We argue that additional conditions beyond mere provision of information are needed in order to do so. (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)

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)

Decision-Making Capacity First published Tue Jan 15, 2008; substantive revision Fri Aug 14, 2020 In many Western jurisdictions the law presumes that adult persons, and sometimes children that meet certain criteria, are capable of making their own medical decisions; for example, consenting to a particular medical treatment, or consenting to participate in a research trial. But what exactly does it mean to say that a subject has or lacks the requisite capacity to decide? This question has to (...) do with what is commonly called “decisional capacity”, a central concept in health care law and ethics, and increasingly an independent topic of philosophical inquiry. -/- Decisional capacity can be defined as the ability of subjects to make their own medical decisions. Somewhat similar questions of capacity arise in other contexts, such as capacity to stand trial in a court of law and the ability to make decisions that relate to personal care and finances. However, the history behind the more general legal notions of capacity to stand trial and capacity to manage one’s life is different and operates somewhat differently in law (Roth, Meisel, & Litz 1977; Zapf & Roesch 2005). For the purposes of this discussion the notion of decisional capacity will be limited to medical contexts only; most notably, those where decisions to consent or to refuse treatment or participation in clinical research are concerned. (shrink)

Participation in healthcare decision-making is considered to be an important right of minors, and is highlighted in both international legislation and public policies. However, despite the legal recognition of children’s rights to participation, and also the benefits that children experience by their involvement, there is evidence that legislation is not always translated into healthcare practice. There are a number of factors that may impact on the ability of the child to be involved in decisions regarding their (...) medical care. Some of these factors relate to the child, including their capacity to be actively involved in these decisions. Others relate to the family situation, sociocultural context, or the underlying beliefs and practices of the healthcare provider involved. In spite of these challenges to including children in decisions regarding their clinical care, we argue that it is an important factor in their treatment. The extent to which children should participate in this process should be determined on a case-by-case basis, taking all of the potential barriers into account. (shrink)

This text provides a unique collection of case studies across a wide range of organizations (higher education, K-12 education, military, state and local government administration, non-profit institutions, and agency management, etc.). These cases examine ethical decision-making and organizational and leadership behavioral concepts that are practiced in these organizations. The cases cover topics facing our workforce today and ask the reader to solve the dilemma. Through a discussion of these cases, students apply decision making and organizational and (...) leadership strategies to analyze each case and therefore gain a better understanding of how to effectively lead and manage within their organizations. This text challenges students to think critically and analytically. Students are encouraged to reflect on options a practitioner could use to solve the problem. All of the cases end with an open scenario and a set of questions, allowing students to offer a wide range of opinions and participate in reflective and robust discussions. (shrink)

Recent discourse in the field of participatory agricultural research has focused on how to blend various forms and intensities of stakeholder participation with quality agricultural science, moving beyond the simple “farmer-first” ideology of the 1980s and early 1990s. Yet, most existing frameworks of participation in agricultural research still adhere to a linear typology of participatory research with an inherent claim of “the more participation, the better.” In this article, we propose a new framework that looks at participatory (...) research elements along different dimensions and attributes and thus takes into account the diversity and dynamics of agricultural research projects. The framework provides a basis for agricultural researchers engaged in participatory processes with local stakeholders to decide for which issues and in which phases certain participatory elements could be used in a specific research context. Rather than aiming at maximizing the adoption of participatory methods, it can thus become a tool for optimizing the use of participatory approaches in agricultural research. We conclude that this framework can be a starting point for a more thoughtful integration of participatory elements in agricultural research projects that does justice to the multidimensional and dynamic nature of stakeholder participation in varying contexts. (shrink)