This research focuses on dinner conversations in family-style group care. Children, who cannot live with their biological families anymore, are given shelter in these family-style group care settings. For the development of an attachment relationship between children and their Professional Foster Parents, it is important that the children feel that they are listened to in order to get an affective and intimate relationship with the parents. In this conversation-analytic research we analysed PFPs’ involvement in multiple activities simultaneously, (...) namely listening and eating, which is referred to as ‘multi-activity’. The analyses have shown systematic ways in which PFPs coordinate their involvement in the activities of ‘doing’ listening and eating, which are when parents avert their gaze from the telling child, they break the social rule which states that hearers need to look at speakers during the telling. We found that when averting their gaze, PFPs do head nods and linguistic means or positioning their bodies in the direction of the telling child. This research contributes to knowledge about interaction between adolescents and PFPs. It further contributes to knowledge about how human beings are able to coordinate multiple activities simultaneously. (shrink)

In Moral Case Deliberation, healthcare professionals discuss ethically difficult patient situations in their daily practice. There is a lack of knowledge regarding the content of MCD and there is a need to shed light on this ethical reflection in the midst of clinical practice. Thus, the aim of the study was to describe the content of healthcare professionals’ moral reasoning during MCD. The design was qualitative and descriptive, and data consisted of 22 audio-recorded inter-professional MCDs, analysed with content analysis. (...) The moral reasoning centred on how to strike the balance between personal convictions about what constitutes good care, and the perceived dissonant care preferences held by the patient. The healthcare professionals deliberated about good care in relation to demands considered to be unrealistic, justifications for influencing the patient, the incapacitated patient’s nebulous interests, and coping with the conflict between using coercion to achieve good while protecting human dignity. Furthermore, as a basis for the reasoning, the healthcare professionals reflected on how to establish a responsible relationship with the vulnerable person. This comprised acknowledging the patient as a susceptible human being, protecting dignity and integrity, defining their own moral responsibility, and having patience to give the patient and family time to come to terms with illness and declining health. The profound struggle to respect the patient’s autonomy in clinical practice can be understood through the concept of relational autonomy, to try to secure both patients’ influence and at the same time take responsibility for their needs as vulnerable humans. (shrink)

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best interests of children. Such models of (...) health care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best interests of children. Such models of (...) health care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

Focusing on one of the most studied dimensions of Social Psychology, i.e., intergroup relations, this study analyzes its discursive accomplishment in a specific group-based intervention, i.e., the talk and work of an Italian group home, i.e., a small alternative care facility hosting a group of out-of-home children. Particularly, we focused on the fictionally called “Nuns’ Home,” a group home previously investigated for its ethnocentric bias, and its intergroup relations with “inside” and “outside” groups, such as schools, biological families, (...) and social services. By combining a qualitative and quantitative approach in analyzing one audio-recorded ethnographic interview with the whole team of professionals, we aimed at accounting for the multitude of internal and external stakeholders that participants refer to, analyzing the discursive accomplishment of ingroup and outgroup in talk-in-interaction and investigating ingroup bias and group qualification. To do so, we detected social categorization markers and qualifying devices that participants rely on when referring to groups. Results show that, among the numerous groups recognized, participants co-construct intergroup relations and ingroup bias implying negative assessment over external groups. Being different from traditional laboratory studies illustrating substantial contraposition between ingroup and outgroup, our qualitative analysis reveals the multitude of groups by which the ingroup is formed and their internal fragmentation. To conclude, we discussed the implications of qualitatively studying intergroup relations in group homes and indicated future lines of research. (shrink)

The Patient in the Family diagnoses the ways in which the worlds of home and hospital misunderstand each other. The authors explore how medicine, through its new reproductive technologies, is altering the stucture of families, how families can participate more fully in medical decision-making, and how to understand the impact on families of medical advances to extend life but not vitality.

Economist-philosopher Amartya Sen's writings on social and political issues have attracted wide audiences. Section 2 introduces his contributions on: how people reason as agents within society; social determinants of people's (lack of) access to goods and of the effective freedoms and agency they enjoy or lack; and associated advocacy of self-specification of identity and high expectations for ‘voice’ and reasoning democracy. Section 3 considers his relation to social theory, his tools for theorizing action in society, and his limited degree of (...) attention to work by sociologists and to capitalism and power structures. Section 4 characterizes a style marked by conceptual refinement, emphases on complexity and individuality, including personal individuality, and reformist optimism. Section 5 shows the features from Sections 3 and 4 at work in his conception of personhood that advocates freedom to make a reasoned composition of personal identity. Similarly, Section 6 addresses his conception of public reasoning and neglect of the sociology of democracy. It contrasts the ideal of a reasoning polity with features in many countries. Sen's programmes for critical autonomy in personhood and for reasoned politics play, nevertheless, a normic role, while his analytical formats help investigation of obstacles to more widespread agency, voice, and democratic participation. (shrink)

Medicine and families, two venerable institutions crucial to human well-being, are in crisis. The medical profession, struggling to control and equitably distribute care, finds itself compromised by its own success; families are shattered by divorce, violence and confusion about their own nature. What has gone unnoticed is the way these two powerful and pervasive spheres contribute to each other's loss of direction. The Patient in the Family diagnoses the ways in which the worlds of home and hospital misunderstand each (...) other. The authors explore how medicine, through its new reproductive technologies, is altering the structure of families, how families can participate more fully in medical decision-making, and how to understand the impact on families when medical advances extend life but not vitality . This book takes an unprecedented perspective on both institutions. Innovative and vivid, their stories tell the tales of families interacting with the medical establishment. (shrink)

The ‘family consent’ process has been placed at the centre of Chinese clinical practice. Although there has been critical analysis of how the process functions in relation to the autonomy and rights of patients, there has been little examination of the perceptions and attitude of patients and their families and the medical professionals, in relation to moral dilemmas that arise in real cases in the bioethical discourse. When faced with a consent form in an emergency situation, the family (...) member's capacity to act is reduced, as he/she becomes enmeshed in the hospital structure of tacit, socially-imposed rules. In a questionnaires based on a real death case in 2008, 70.9% of the surveyed medical professionals (n = 3,665) disagreed with performing surgery without the consent of the family even if the patient's life was in danger, while 36.6% of the surveyed patients (n = 1,198) hold the same position. This work demonstrates the weakness of the family consent process as a safeguard of patient's autonomy. Finally, I argue that saving the patient's life should be the overriding obligation rather than the respect for the surrogate's autonomous choice at such a decisive moment. (shrink)

The inclusion of morally binding values such as religious—or in a broader sense, spiritual—values fundamentally alter organizational decision-making and ethical behavior. Family firms, being a particularly value-driven type of organization, provide ample room for religious beliefs to affect family, business, and individual decisions. The influence that the owning family is able to exert on value formation and preservation in the family business makes religious family firms an incubator for value-driven and faith-led decision-making and behavior. They (...) represent a particularly rich and relevant context to re-assess the relationship between ethical beliefs, decision-making processes and behaviors in business organizations at the interface between family and professional logics. This Special Issue is dedicated to deepening our understanding of the role religious values and spirituality play in the formation of organizational ethical practices in faith-led family firms and resulting organizational and family-related outcomes. In this editorial, we introduce the 10 papers included in this Special Issue, which investigate the relationship between religion or spirituality and family firm ethical behavior in various geographical, cultural and religious contexts, using a multitude of qualitative and quantitative methodologies. By focusing on the effects of religious or spiritual orientations on both the business and the family, as well as on the values, norms and goals present in the family business system, further research can gain a more nuanced understanding of the relationship between religious and spiritual believes, and sustainable ethical behavior in family firms. (shrink)

Newborn bloodspot screening programs are some of the longest running population screening programs internationally. Debate continues regarding the need for parents to give consent to having their child screened. Little attention has been paid to how meanings of consent-related terminology vary among stakeholders and the implications of this for practice. We undertook semi-structured interviews with parents, healthcare professionals and policy decision makers in two Canadian provinces. Conceptions of consent-related terms revolved around seven factors within two broad domains, decision-making and information (...) attainment. Decision-making comprised: parent decision authority; voluntariness; parent engagement with decision-making; and the process of enacting choice. Information ascertainment comprised: professional responsibilities ; parent responsibilities; and the need for discussion and understanding prior to a decision. Our findings indicate that consent-related terms are variously understood, with substantive implications for practice. We suggest that consent procedures should be explained descriptively, regardless of approach, so there are clear indications of what is expected of parents and healthcare professionals. Support systems are required both to meet the educational needs of parents and families and to support healthcare professionals in delivering information in a manner in keeping with parent needs. (shrink)

What is family-centred care of a hospitalized child? A critical understanding of the concept of family-centred care is necessary if this widely preferred model is to be differentiated from other health care ideals and properly evaluated as appropriate to the care of hospitalized children. The article identifies distinguishable interpretations of family-centred care that can pull health professionals in different, sometimes conflicting directions. Some of these interpretations are not qualitatively different from robust interpretations of the ideals of parental (...) participation, care-by-parent and partnership in care that are said to be the precursors of family-centred care. A prominent interpretation that regards the child and his or her family collectively as the ‘unit of care’ arguably arises from ambiguity and is significantly problematic as a model for the care of hospitalized children. Clinical practice driven by this interpretation can include courses of action that do not aim to do what will best promote a hospitalized child’s welfare, and such cases will not be unusual. More broadly, this interpretation raises challenging questions about the responsibilities and authority of health professionals in relation to the interests of hospitalized children and their families. (shrink)

According to the literature, the family is now considered to be the most important resource for the care and support of a sick family member. Families are being increasingly invited and trained to play a utilitarian role, not just as family caregivers, but as healthcare agents. Healthcare institutions, based on neoliberal health policies, are encouraging them to perform increasingly complex and professionalized tasks. The burden associated with this expanded healthcare function, however, is significant (fatigue, emotional distress and (...) exhaustion). The aim of this article was to present French sociologist Jacques Donzelot's theoretical perspective on governing through the family. According to Donzelot, such a government is exercised through various power techniques, including the instrumentalization of the family role and the transfer to families of the responsibility for health care. This author describes how healthcare institutions call on the family to perform hospital and biomedical practices within the home. A spin‐off of neoliberalism, the practices of governing through families specifically target women, who are considered to be the pillar of the family. Donzelot's perspective is very relevant to nursing, but is still rarely mobilized in the discipline. His critical perspective allows for a re‐reading of relations of power and mechanisms of surveillance and control of families, issues that are often overlooked in nursing research. (shrink)

The paediatric intensive care unit is a high-stress environment for parents, families and health care professionals alike. Family members experiencing stress or grief related to the admission of their sick child may at times exhibit challenging behaviours; these exist on a continuum from those that are anticipated in context, through to unacceptable aggression. Rare, extreme behaviours include threats, verbal or even physical abuse. Both extreme and recurrent ‘subthreshold’ behaviours can cause significant staff distress, impede optimal clinical care and compromise (...) patient outcomes. The unique PICU environment and model of care may magnify stressors for both families and staff and the family-centred approach to care central to paediatric practice, may also contribute to contextual challenges. Pervasive conflict in paediatric healthcare is harmful for patients, families, PICU staff and the institution more broadly. We propose that caring for children and caring for staff are inseparable goals and the latter has been inadvertently but detrimentally deprioritised as FCC has become a primary focus. A transparent and graded hierarchy of responses to variable levels of challenging behaviour is necessary to ensure that families are supported, while HCPs remain protected in the workplace. This requires establishing firm limits supported by all teams and levels of the institution. As such, we aim to identify and clarify the context and impact of challenging parent and family behaviour in the PICU and to offer potential, proactive mitigation strategies, based on reflections and stakeholder discussion following recent clinical challenges and experiences in our unit. (shrink)

A defense of the modern family, in historical perspective, this book reconstructs political theory with the family in an important and honorable place. By reviewing critically both traditional and contemporary thought on the most special relationships—as well as current public policy issues relating to them—the author addresses concerns shared by professional and lay constituencies. Noting Tocqueville's observation of the American obsession with reevaluating and remodeling the family, Professor Abbott pleads for a balanced view. The development of (...) liberal ambivalence toward the family, along with radical hostility toward it, is clearly traced. For the most part the family was safely incorporated into political theory from Aristotle to Cicero and onward to Augustine and Aquinas until modern times. Then came the challenges of the rational individualists and the romantic individualists, followed by the attacks of social and psychological radicals. Some traditional criticisms of the family are shown to be soundly based, albeit less devastating than the critics supposed. As expanded in contemporary life, however, the great critics' revisionist models take on a fantastic quality. Here we are introduced to pleas for the "eroticization of children" and for freedom from "tyranny of reproductive biology." Proposals for new bureaucratic support structures appear with great frequency: professional guardians, children's camps, cloning hospitals. And people try to act out the roles prescribed for them by theorists who attempted "to set the solitary in new and different units." Liberals and radicals, the author argues, are infatuated with a "rights model," which "takes as its basis self-sufficient rational human beings"—at the expense of "solidarity among human beings." A tradition exists, Professor Abbott holds, that facilitates reconciliation between the modern family and the political order: pluralism. Pluralism is an attempt to balance individual autonomy and mutuality, decentralization and stratification, reform and tradition, reason and sentiment. Public policy in respect to schools, housing, health care, working conditions, and recreation should be designed to foster a pluralistic family-centered society. In line with this thesis the author offers a fresh perspective on such burning issues as abortion, sexual preference, alternative lifestyles, child abuse, and children's rights. _The Family on Trial _therefore is relevant to the concerns of social and behavioral scientists, the helping professions and the clergy, teachers and parents. (shrink)

This comprehensive book covers the research, theory, policy and practice context of unusual reproduction using third parties. Olga Van den Akker details the psychological adaptation required to continuing changes in public opinion, advances in technologies and new legislations in surrogate motherhood and discusses their impact at an individual, societal and global level. She describes the competing interests and interactions between legal, organisational, personal, social, psychological and cultural issues in relation to biological and genetic surrogate and commissioning parenthood. This book is (...) intended for professionals, practitioners, academics and students interested in the complexities of unusual reproduction using multidisciplinary perspectives. (shrink)

Background:Dignity experience in the daily lives of people living with dementia is influenced by their relational interactions with others. However, literature reviews show that knowledge concerning crucial interactional qualities, preserving their sense of dignity, is limited.Aim:The aim of this study was to explore and describe crucial qualities of relational interactions preserving dignity experience among people with dementia, while interacting with family, social network, and healthcare professionals.Methodology:The study was founded upon Gadamer’s philosophical hermeneutics, and an exploratory design employing qualitative research (...) interviews was conducted.Participants and research context:A total of 11 individuals diagnosed with mild to moderate dementia, living in their own homes, were recruited from two Hospital Memory Clinics in Norway.Ethical considerations:In recruiting persons with dementia as study participants, sensitivity toward their life history, autonomy, integrity, relationships, and dignity is essential. These standards, and the ethical principles of moral sensitivity to their vulnerability, doing no harm, showing justice, and respecting their personal utility, guided our research.Results:Three main interactional qualities preserving the participants’ dignity experience were found: Experiencing love and confirmation; experiencing social inclusion and fellowship; experiencing humane warmth and understanding within a caring culture, while being met as an equal human being. A total of 10 sub-qualities were identified within these 3 main qualities.Discussion and final considerations:Dignity experience among the participants was preserved when certain interactional qualities were present in their interactions with family, social network, and healthcare professionals. While supporting some of the findings of previous studies, this study adds new knowledge on the subject. Knowledge of relational interactions toward preserving dignity experience should be a fundamental part of future dementia care practice. Based on the results of this study, an empirical–theoretical model was developed for this purpose. (shrink)

Currently, some of the most significant moral issues involving genetic links relate to genetic knowledge. In this paper, instead of looking at the frequently addressed issues of responsibilities professionals or institutions have to individuals, I take up the question of what responsibilities individuals have to one another with respect to genetic knowledge. I address the questions of whether individuals have a moral right to pursue their own goals without contributing to society's knowledge of population genetics, without adding to their (...) class='Hi'>family's knowledge of its genetic history, and without discovering genetic information about themselves and their offspring. These questions lead to an examination of the presumed right to genetic ignorance and an exploration of a variety of social bonds. Analyzing cases in light of these considerations leads to a surprising conclusion about a widely accepted precept of genetic counseling, to some ethical insights into typical problems, and to some further unanswered questions about personal responsibility in the face of genetic knowledge. (shrink)

In the last decade, Family Group Conferences have increasingly been used to help people and their networks deal with their problems. The FGC fits well with the call for equal rights and self-management coming from clients and client movements, as well as the economy-driven pressure towards more informal and less professional care coming from governments. However, there is a lack of knowledge about the underlying theory to explain how the FGC works. In this article, we aim to provide (...) such a theoretical basis by examining how the concept of empowerment can be linked with the basic assumptions underlying the FGC. Can making a plan of their own indeed help to empower people and if so, how does the process of empowerment proceed? Empowerment is often mentioned as a goal of the FGC, but authors are not unanimous when it comes to the operationalisation of empowerment, especially on the relational level of the person in his or her social context. In the article, we use the concepts of relational autonomy and resilience to conceptualize empowerment on the relational and individual level. (shrink)

Background: The law and literature about children’s consent generally assume that patients aged under-18 cannot consent until around 12 years, and cannot refuse recommended surgery. Children deemed pre-competent do not have automatic rights to information or to protection from unwanted interventions. However, the observed practitioners tend to inform young children s, respect their consent or refusal, and help them to “want” to have the surgery. Refusal of heart transplantation by 6-year-olds is accepted. Research question: What are possible reasons to explain (...) the differences between theories and practices about the ages when children begin to be informed about elective heart surgery, and when their consent or refusal begins to be respected? Research design, participants and context: Research methods included reviews of related healthcare, law and ethics literature; observations and conversations with staff and families in two London hospitals; audio-recorded semi-structured interviews with a purposive sample of 45 healthcare professionals and related experts; interviews and a survey with parents and children aged 6- to 15-years having elective surgery (not reported in this paper); meetings with an interdisciplinary advisory group; thematic analysis of qualitative data and co-authorship of papers with participants. Ethical considerations: Approval was granted by four research ethics committees/authorities. All interviewees gave their informed written consent. Findings: Interviewees explained their views and experiences about children’s ages of competence to understand and consent or refuse, analysed by their differing emphases on informed, signified or voluntary consent. Discussion: Differing views about children’s competence to understand and consent are associated with emphases on consent as an intellectual, practical and/or emotional process. Conclusion: Greater respect for children’s practical signified, emotional voluntary and intellectual informed consent can increase respectful understanding of children’s consent. Nurses play a vital part in children's practitioner-patient relationships and physical care and therefore in all three elements of consent. (shrink)

The main objective of this paper is to describe how quality of care may be improved during an involuntary admission process of patients suffering from Korsakoff's syndrome. It presents an empirically grounded analysis with different perspectives on ‘doing good’ during this process. Family carers', healthcare professionals' and legal professionals' ways of understanding and ordering this problematic situation appear very different. This could prevent patients from getting the proper care they need, with risk of more suffering and quality of life (...) below the minimum acceptable. All this possibly lead to immoral dehumanizing situations. Firstly, the background of our empirical study is sketched. Secondly, the different perspectives on ‘doing good’ are summarized and compared. Thirdly, the tensions arising from the different conceptualizations of autonomy and different types of responsibilities of the actors are clarified. A common ‘doing good’ during involuntary admission necessitates removal of any tensions within the relational network by weighing and balancing the different perspectives on autonomy and the resulting responsibilities. With this in mind, we propose a renewed time/action table for involuntary admission, which tends to address all patients' needs at the right time. The solution presented might help healthcare professionals, who are squeezed in between patients, family carers, legal professionals and overall rules, to create practices in which patients suffering from Korsakoff's syndrome can maintain their dignity and receive the care they need. Earlier interventions, timely and adequate diagnosis, and diminishment of tensions between the different actors by fine‐tuning their paradigmatic frameworks are suggested to be part of a solution. (shrink)

Burnout has been recognized as a serious health problem. In Portugal, before COVID-19 Pandemic, there were strong indicators of high prevalence of burnout in physicians and nurses. However, the Portuguese Health Care Service was able to efficiently respond to the increased demands. This study intends to understand how psychosocial variables might have been protective factors for burnout in physicians and nurses in Portugal. Specifically, we considered several psychosocial variables that have been found to be protective factors for burnout in previous (...) research and we compared their predictive and unique impact in the prediction of burnout. These variables are perceptions of justice (distributive, procedural, justice from colleagues, justice from patients, and their families), professional identification, meaningful work and empathy. We also included workload, as a risk factor, and controlled other variables that can be confounds for burnout, such as socio-demographic variables, ideological variables (religiosity, political orientation), and specific variables related with COVID-19 pandemic. The sample of the present study is composed by 229 physicians (aged between 23 and 70 years old,M= 36.54;SD= 10.72; 48% male and 52% female) and 268 nurses (aged between 22 and 69 years old,M= 34.96;SD= 9.52; 27% male and 73% female). An online survey was created using Qualtrics and participants were recruited via Facebook and LinkedIn. The data were collected during 29 days (between the 45th and the 74th days after the first diagnosed case of COVID-19 in Portugal). The results showed that workload was a significant risk factor, except for disengagement in physicians. The most consistent protectors across samples were procedural justice (for both dimensions of burnout, both in physicians and nurses) and professional identification (for disengagement, both in physicians and nurses; for exhaustion only in physicians). This study suggests that decreasing workload and promoting procedural justice and professional identification are key factors that might be simultaneously and independently addressed in interventions for reducing the risk of burnout or preventing it from occurring in the first place. (shrink)

Professionals within the mental health services face many ethical dilemmas and challenging situations regarding the use of coercion. The purpose of this study was to evaluate the significance of participating in systematic ethics reflection groups focusing on ethical challenges related to coercion. In 2013 and 2014, 20 focus group interviews with 127 participants were conducted. The interviews were tape recorded and transcribed verbatim. The analysis is inspired by the concept of ‘bricolage’ which means our approach was inductive. Most participants report (...) positive experiences with participating in ethics reflection groups: A systematic and well-structured approach to discuss ethical challenges, increased consciousness of formal and informal coercion, a possibility to challenge problematic concepts, attitudes and practices, improved professional competence and confidence, greater trust within the team, more constructive disagreement and room for internal critique, less judgmental reactions and more reasoned approaches, and identification of potential for improvement and alternative courses of action. On several wards, the participation of psychiatrists and psychologists in the reflection groups was missing. The impact of the perceived lack of safety in reflection groups should not be underestimated. Sometimes the method for ethics reflection was utilised in a rigid way. Direct involvement of patients and family was missing. This focus group study indicates the potential of ethics reflection groups to create a moral space in the workplace that promotes critical, reflective and collaborative moral deliberations. Future research, with other designs and methodologies, is needed to further investigate the impact of ethics reflection groups on improving health care practices. (shrink)

Fear of cancer is mostly related to cancer recurrence, metastasis, additional cancer, and diagnostic tests. Its legacy as a lethal disease has raised fear of approaching death. Currently, cancer’s total suffering and the worsening phenomena have raised fear, especially among female patients. Family caregivers (FCGs) who are responsible for the day-to-day cancer care at home need to help the patients deal with this fear frequently. Due to the limited care competencies, they need supportive care from healthcare professionals in cancer (...) fear management. This study aims to assess how types of demanded healthcare information affect the FCG’s role in reducing the fear of female cancer patients. The mindsponge theory was used in conceptual development and interpretation. Bayesian Mindsponge Framework (BMF) analytics were used for statistical analysis on a dataset of 48 spouses (husbands) and 12 other family members in five congested communities of Surabaya, Indonesia. Results showed that among the six types of healthcare information, FCGs with higher demand on cancer-specific information and information on cancer physical needs were more likely to need support in reducing the fear of female cancer patients. Meanwhile, FCGs with a higher demand for information on support services were less likely to need support to reduce cancer patients’ fear. Other types of healthcare information have ambiguous effects on the need for support in reducing cancer-induced fear. This study reveals that the demanded cancer-specific information, e.g., cancer’s prognosis or likely outcome and information on cancer physical needs, need to be met in priority to assist FCG’s role in cancer fear management. (shrink)

Little is known about health care professionals’ perceptions regarding what it means to treat patients and families with respect and dignity in the intensive care unit (ICU) setting. To address this gap, we conducted nine focus groups with different types of health care professionals (attending physicians, residents/fellows, nurses, social workers, pastoral care, etc.) working in either a medical or surgical ICU within the same academic health system. We identified three major thematic domains, namely, intrapersonal (attitudes and beliefs), interpersonal (behaviors), and (...) system (contextual) factors that influence treatment with respect and dignity. Participants suggested strategies for improving treatment of patients and families in the ICU with respect and dignity, as well as the related need for enhancing respect among the multidisciplinary team of clinicians. Implementing these strategies will require innovative educational interventions and leadership. Future research should focus on the design and evaluation of such interventions on the quality of care. (shrink)

The way Cambodian patients and health professionals judge the priority of HIV-infected patients in relation to the allocation of antiretroviral drugs was examined. Participants were either HIV-infected patients attending the HIV/AIDS Care and Support Centre for People Living with HIV/AIDS in Phnom Penh (29 females and 21 males) or members of the staff (9 physicians, 6 pharmacists and 15 health counsellors and health educators). They were presented with stories of a few lines depicting a patient's situation and were instructed to (...) judge the extent to which the patient should be given priority for HIV drugs. The stories were composed according to a four within-subject factor design: (a) the patient's family responsibilities, (b) the severity of infection, (c) the time elapsed since the first consultation, and (d) the financial difficulties of the family. Most patients expressed the view that the drugs should be used for the patients who are most important from a familial point of view, namely, when the family contains small children and/or is already in a precarious financial condition. (shrink)

FEX A, FLENSNER G, EK A‐C and SÖDERHAMN O. Nursing Inquiry 2011; 18: 336–347 Living with an adult family member using advanced medical technology at homeAn increased number of chronically ill adults perform self‐care while using different sorts of advanced medical technology at home. This hermeneutical study aimed to gain a deeper understanding of the meaning of living with an adult family member using advanced medical technology at home. Eleven next of kin to adults performing self‐care at home, (...) either using long‐term oxygen from a cylinder or ventilator, or performing peritoneal or haemodialysis, were interviewed. The qualitative interviews were analysed using a Gadamerian methodology. The main interpretation explained the meaning as rhythmical patterns of connectedness versus separation, and of sorrow versus reconciliation. Dependence on others was shown in the need for support from healthcare professionals and significant others. In conclusion, next of kin took considerable responsibility for dependent‐care. All next of kin were positive to the idea of bringing the technology home, even though their own needs receded into the background, while focusing on the best for the patient. The results were discussed in relation to dependent‐care and transition, which may have an influence on the self‐care of next of kin and patients. The study revealed a need for further nursing attention to next of kin in this context. (shrink)

This study analyses for the first time whether and when moral distress may be related to work-family conflict and burnout. Additionally, this study examines whether resilience and positive refocusing might protect healthcare professionals from the negative effects of moral distress. A total of 153 Italian healthcare professionals completed self-report questionnaires. Simple and moderated mediation models revealed that moral distress was positively related to burnout, directly and indirectly, as mediated by work-family conflict. Highly resilient professionals experienced low work-family (...) conflict, regardless of moral distress levels. Moreover, professionals who frequently used positive refocusing were less vulnerable to burnout following moral distress. (shrink)

Family involvement in healthcare decision-making for competent patients occurs to varying degrees in many communities around the world. There are different attitudes about who should make treatment decisions, how and why. Legal and professional ethics codes in most jurisdictions reflect and support the idea that competent patients should be enabled to make their own treatment decisions, even if others, including their healthcare professionals, disagree with them. This way of thinking contrasts with some cultural norms that put more emphasis (...) on the family as a decision-making entity, in some circumstances to the exclusion of a competent patient. Possible tensions may arise between various combinations of patient, family members and healthcare professionals, and healthcare professionals must tread a careful path in navigating family involvement in the decision-making process. These tensions may be about differences of opinion about which treatment option is best and/or on who should have a say or influence in the decision-making process. While some relevant cultural, legal and policy considerations vary from community to community, there are ethical issues that healthcare professionals need to grapple with in balancing the laws and professional codes on decision-making and the ethical principle of respecting patients and their autonomy. This paper will highlight and propose that a partial resolution to these issues may lie in relational understandings of autonomy, which in principle justify interventions by healthcare professionals and family that support patients in decision-making. (shrink)

STAJDUHAR K, FUNK L, JAKOBSSON E and ÖHLÉN J. Nursing Inquiry 2010; 17: 221–230A critical analysis of health promotion and ‘empowerment’ in the context of palliative family care-givingTraditionally viewed as in opposition to palliative care, newer ideas about ‘health-promoting palliative care’ increasingly infuse the practices and philosophies of healthcare professionals, often invoking ideals of empowerment and participation in care and decision-making. The general tendency is to assume that empowerment, participation, and self-care are universally beneficial for and welcomed by all (...) individuals. But does this assumption hold for everyone, and do we fully understand the implications of health-promoting palliative care for family caregivers in particular? In this study, we draw on existing literature to highlight potential challenges arising from the application of ‘family empowerment’ strategies in palliative home-care nursing practice. In particular, there is a risk that empowerment may be operationalized as transferring technical and medical-care tasks to family caregivers at home. Yet, for some family caregivers, a sense of security and support, as well as trust in professionals, may be equally if not more important than empowerment. Relational and role concerns may also at times take precedence over a desire for empowerment. The potential implications of ‘family empowerment’ are explored in this regard. ‘Family empowerment’ approaches need to be accompanied by a strong understanding of how to best support individual palliative family caregivers. (shrink)

This paper contributes to the growing line of thought in bioethics that respect for autonomy should not be equated to the facilitation of individualistic self determination through standard requirements of informed consent in all healthcare contexts. The paper describes how in the context of donation for living related liver transplantation (LRLT) meaningful, responsible decision making is often embedded within family processes and its negotiation. We suggest that good donor risk communication in families promote “conscientious autonomy” and “reflective trust”. From (...) this, the paper offers the suggestion that transplant teams and other relevant professionals have to broaden their role and responsibility for risk communication beyond proper disclosure by addressing the impact of varied psychosocial conditions on risk interpretation and assessment for potential donors and family stakeholders. In conclusion, we suggest further research questions on how professional responsibility and role-taking in risk communication should be morally understood. (shrink)

BackgroundMedical assistance in dying (MAID) has been legal in Québec since December 2015 and in the rest of Canada since July 2016. Since then, more than 60 people have donated their organs after MAID. Such donations raise ethical issues about respect of patients’ autonomy, potential pressure to choose MAID, the information given to potential donors, the acceptability of directed donations in such a context and the possibility of death by donation. The objective of this study was to explore Québec professionals’ (...) perspectives on the ethical issues related to organ donation after MAID.MethodsWe conducted semi-directed interviews with 21 health care professionals involved in organ donation such as intensivists and intensive care nurses, operating room nurses, organ donation nurses and coordinators.ResultsThe participants were all favourable to organ donation after MAID in order to respect patients’ autonomy. They also favoured informing all potential donors of the possibility of donating organs. They highlighted the importance of assessing donors’ reasons for requesting MAID during the assessment. They were divided on directed donation, living donation before MAID and death by donation.ConclusionOrgan donation after MAID was widely accepted among the participants, based on the principle of respect for the donor’s autonomy. The findings of this study only provide the perspectives of Québec health care professionals involved in organ donation. Future studies are needed to gather other stakeholders’ perspectives on this issue as well as patients’ and families’ experiences of organ donation after MAID. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Burma’s Healthcare Under Fire: My Experience as an Exiled Medical ProfessionalP. P. KyawI used to work as a medical doctor in a less developed state than many big cities in Burma1 that experienced prolonged civil wars and current similar atrocities decades before the urban areas of the country experienced them. Before everything started, I was responsible for the medical management of the most vulnerable communities and had been struggling (...) with pandemic-related medical activities. Those were the happiest years of my life. I was with one of the best international organizations, where every effort I made was directly delivered to the patients with no unnecessary paperwork. The system was efficient, my colleagues were supportive, and I had a good work-life balance. I supported my family and whoever needed temporary financial support, played music weekly, met good friends who I hung out with every weekend, and [End Page 164] found hobbies like gardening and crocheting. I was content and happy. I even postponed my plans to get registered as a doctor in the Western world.Before moving to this beautiful ethnic state in 2019, I previously worked as a government medical doctor in Yangon, the capital. As much as I loved working in those civilian hospitals, I could not support myself with a monthly pay of $100-$150 USD. It was a hard decision to leave the service because it meant I could not pursue the medical specialty that I had always longed for and had to leave like-minded supportive colleagues. In Myanmar, unless you are a civil servant, you cannot pursue further clinical specialties. However, after leaving the government’s service to work in humanitarian medical assistance in hard-to-reach areas of Burma, I learned that life is still beautiful outside my comfort zone, until February 2021 when the coup began. Democratically elected members of the country’s ruling party were overthrown by the military, which then bestowed power in a military junta.I expected the election prior to the coup in November 2020 to be an uphill battle for Burma, but nothing more. I was still in denial when I first heard the news from one of the town’s NGO staff. The person had to travel on a motorbike to inform everyone that the junta had staged the coup. No telephone or internet was working at that time. My colleagues and I cried in our office, saying, “We are so young, and the future is still ahead. I don’t think this is going to last long. Maybe it will be over in a few days or, at most, a few weeks.” Once the peaceful protests started nationwide, my friends and I provided medical cover for the protesters, initially for minor medical problems such as low sugar, low blood pressure, injuries from accidental minor slips and falls, etc. Never in my life had I imagined that I would be taking care of bullet wounds and people injured by live rounds. While learning about gunshot wounds in forensic medicine, I thought, “Oh, this is not going to be very useful because Burma is not America, and I am not going there.” Then suddenly, it became too real and more useful than I would’ve liked it to be.I always think back to one especially bloody day when many people in the town were shot with live rounds. We assisted many patients. Usually, we would go around with the protest groups until they were over in the late afternoon. The protesters were always peaceful. There were no riots, no harmful acts, or vandalism. Only when the protesters were cruelly dispersed with tear gas, high-pressure pumps, rubber bullets, and live rounds (to the head) did they decide to defend themselves while still making their voices heard. The only defenses people had to counteract the live rounds were things like metal covers, firecrackers, and slingshots.One afternoon in March 2021, my team and I took an early break for lunch—unaware that some people would lose their lives that afternoon. We followed the local protests through Facebook Live while having lunch and started to hear firecracker sounds. A few seconds later, we knew... (shrink)

Since the last generation medical ethics has seen a remarkable shift from benign medical paternalism to patient rights and autonomy. Whereas once it might have been acceptable for doctors to decide, largely on their own, what was in the best interests of their patients, today senior health professionals are expected to make decisions jointly both with patients or their carers and with other health professionals. Patient autonomy and justice, and not simply beneficence, are usually thought to be crucial to medical (...) ethics today.Although I strongly support this shift in medical ethics, I believe it is important to recognise that it has some cost to medical professionals, to patients and even at times to the National Health Service . Medical paternalism, when it was genuinely benign, did have some benefits both for doctors and for their patients. Yet precisely because most of us are no longer prepared to be at the receiving end of such paternalism, these particular benefits are now largely lost to us.The new joint statement, Decisions Relating to Cardiopulmonary Resuscitation,1 illustrates this point well. At the outset it admits that “health professionals are aware that decisions about attempting resuscitation raise very sensitive and potentially distressing issues for the patient and people emotionally close to the patient”. It was because of these sensitive and potentially distressing issues that it was once thought acceptable to make do not attempt resuscitation orders without consulting either patients or their families and with the knowledge that the latter would probably never discover that such orders had ever been made. Now, however, health workers are warned frankly that they “should remember …. (shrink)

Society in the 21st century is in many ways different from society in the 1950s, the 1960s or the 1970s. Two of the most important changes relate to the level of education in the population and the balance between work and private life. These days a large percentage of people are highly educated. Partly as a result of economic progress in the 1950s and the 1960s and partly due to the fact that many women entered the labour force, people started (...) searching for ways to combine their career with family obligations and a private life (including hobbies, outings and holidays). Medical professional ethics, more specifically: professional attitudes towards patients and colleagues, is influenced by developments such as these, but how much and in what way? It was assumed that surgery ethics would be more robust, resistant to change and that general practitioner (GP) ethics would change more readily in response to a changing society, because surgeons perform technical work in operating theatres in hospitals whereas GPs have their offices in the midst of society. The journals of Dutch surgeons and GPs from the 1950s onwards were studied so as to detect traces of change in medical professional ethics in The Netherlands. GP ethics turned out to be malleable compared with surgery ethics. In fact, GP medicine proved to be an agent of change rather than merely responding to it, both with regard to the changing role of patients and with regard to the changing work life balance. (shrink)

Background Moral distress is a serious problem for health care personnel. Surveys, individual interviews, and focus groups may not capture all of the effects of, and responses to, moral distress. Therefore, we used a new participatory action research approach—moral conflict assessment (MCA)—to characterize moral distress and to facilitate the development of interventions for this problem. Aim To characterize moral distress by analyzing responses of intensive care unit (ICU) personnel who participated in the MCA process. Research Design In this qualitative study, (...) we invited all ICU personnel at 3 urban hospitals to participate in individual or group sessions using the 8-step MCA tool. These sessions were facilitated by either a clinical ethicist or a counseling psychologist who was trained in this process. During each session, one of the researchers took notes and prepared a report for each MCA which were analyzed using qualitative content analysis. Participants and Research Context A total of 24 participants took part in 15 sessions, individually or in groups; 14 were nurses and nurse leaders, 2 were physicians, and 8 were other health professionals. Ethical Considerations This study was approved by the Providence Health Care/University of British Columbia Behavioural Research Ethics Board. Each participant provided written informed consent. Results The main causes of moral distress related to goals of care, communication, teamwork, respect for patient’s preferences, and the managerial system. Suggested solutions included communication strategies and educational activities for health care providers, patients, family members, and others about teamwork, advance directives, and end-of-life care. Participants acknowledged that using the MCA process helped them to reflect on their own thoughts and use their moral agency to turn a distressing situation into a learning and improvement opportunity. Conclusions Using the MCA tool helped participants to characterize their moral distress in a systematic way, and to arrive at new potential solutions. (shrink)

Recognition that the Principle of Respect for Autonomy fails to work in family-centric societies such as Singapore has recently led to the promotion of relational autonomy as a suitable framework within which to place healthcare decision making. However, empirical data, relating to patient and family opinions and the practices of healthcare professionals in Confucian-inspired Singapore, demonstrate clear limitations on the ability of a relational autonomy framework to provide the anticipated compromise between prevailing family decision-making norms and adopted (...) Western led atomistic concepts of autonomy. Evidence suggests that despite a growing infusion of Western influence, there is still little to indicate any major shift to individual decision making, particularly in light of the way society and healthcare are structured. Similarly, the lack of employing a shared decision-making model and data that discredit the notion that the complex psychosocial and cultural factors that affect the decision making may be considered “content neutral” not only prevents the application of relational autonomy but questions the viability of the values behind the Principle of Respect for Autonomy. Taking into account local data and drawing upon a wider concept of personhood that extends beyond prevailing family-centric ideals along with the complex interests that are focused upon the preservation of the unique nature of personhood that arises from the Ring Theory of Personhood, we propose and “operationalize” the employing of an authoritative welfare-based approach, within the confines of best interest decision making, to better meet the current care needs within Singapore. (shrink)

Background:Organ donation and transplantation have made it possible to both save life and to improve the quality of life for a large number of patients. In the last years there has been an increasing gap between the number of patients who need organs and organs available for transplantation, and the focus worldwide has been on how to meet the organ shortage. This also rises some ethical challenges.Objective:The objective of this study was to explore healthcare professionals' experience of ethics related to (...) care and interaction with critically ill patients with severe brain injuries and their families.Research design:A hermeneutic phenomenological approach was used to explore the participants' experiences. Methods for collecting data were a combination of participant observations and in-depth interviews.Participants and research context:Two ICUs in a Norwegian university hospital were recruited for data collection. A total of 12 cases were observed, and 32 of the healthcare professionals involved were interviewed.Ethical considerations:The study was approved by the Regional Committee for Research Ethics. Permission to the study in the ICUs was obtained from the Chief Physician in the two ICUs respectively. The right of the participants was ensured by written, voluntary, and informed consent.Findings:From the thematic analysis, a structure of the participants' experiences emerged as a process. While the patients' condition was clarified through phases of prognostic ambiguity, gradual clarification and prognostic certainty, interaction with the families was characterized by ambiguity that involved withholding. The prognostic process had a great impact on how the healthcare professionals interacted with the family. The interaction challenged the participants' caring values in various ways and captured an important structure in their experiences of the ethical interaction with the patients' families. These challenges distinguish caring for families in donation situations from caring for relatives of critically ill patients in general.Discussion:In the discussion we have illuminated how professional ethics may be threatened by more pragmatic and utilitarian arguments contained in regulations and transplant act.Conclusion:Ethical questions should be discussed more both in educations of healthcare professionals and in clinical practice. (shrink)

This paper examines moral dilemmas faced by family caregivers of older adults who employ live-in migrant care workers. Being both a family caregiver as well as an employer of a live-in migrant care worker often puts family members at a crossroad, where moral decisions must be made. Lacking a formal role, family members do not have a professional code of ethics or other clear rules that can guide their actions, and their choices are rooted in (...) cultural, community, familial, and personal values. This paper discusses moral dilemmas that result from family caregivers’ dual commitment, to the wellbeing of their older sick relative who is the recipient of care, and to the wellbeing of the live-in care worker whom they employ. The paper uses relational ethics as a theoretical framework to discuss three cases that involve complex moral decision making in real life. (shrink)

BackgroundThere is a lack of empirical research regarding the outcomes of such clinical ethics support methods as moral case deliberation. Empirical research in how healthcare professionals perceive potential outcomes is needed in order to evaluate the value and effectiveness of ethics support; and help to design future outcomes research. The aim was to use the European Moral Case Deliberation Outcome Instrument instrument to examine the importance of various MCD outcomes, according to healthcare professionals, prior to participation.MethodsA North European field survey (...) among healthcare professionals drawn from 73 workplaces in a variety of healthcare settings in the Netherlands, Norway and Sweden. The Euro-MCD instrument was used.ResultsAll outcomes regarding the domains of moral reflexivity, moral attitude, emotional support, collaboration, impact at organisational level and concrete results, were perceived as very or quite important by 76%–97% of the 703 respondents. Outcomes regarding collaboration and concrete results were perceived as most important. Outcomes assessed as least important were mostly about moral attitude. ‘Better interactions with patient/family’ emerged as a new domain from the qualitative analysis. Dutch respondents perceived most of the outcomes as significantly less important than the Scandinavians, especially regarding emotional support. Furthermore, men, those who were younger, and physician-respondents scored most of the outcomes as statistically significantly less important compared with the other respondents.ConclusionsThe findings indicate a need for a broad instrument such as the Euro-MCD. Outcomes related to better interactions between professionals and patients must also be included in the future. The empirical findings raise the normative question of whether outcomes that were perceived as less important, such as moral reflexivity and moral attitude outcomes, should still be included. In the future, a combination of empirical findings and normative reflection will contribute to the revision of the instrument. (shrink)

The article explores the underlying reasons for patients’ self‐perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational phenomenon. (...) We analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted. (shrink)

A significant international development agenda in the practice of nurses supporting families with young children focuses on establishing partnerships between professionals and service users. Qualitative data were generated through interviews and focus groups with 22 nurses from three child and family health service organisations, two in Australia and one in New Zealand. The aim was to explore what is needed in order to sustain partnership in practice, and to investigate how the concept of practice architectures can help understand attempts (...) to enhance partnerships between nurses and families. Implementation of the Family Partnership Model (FPM) is taken as a specific point of reference. Analysis highlights a number of tensions between the goals of FPM and practice architectures relating to opportunities for ongoing learning; the role of individual nurses in shaping the practice; relationships with peers and managers; organisational features; and extra‐organisational factors. The concept of practice architectures shows how changing practice requires more than developing individual knowledge and skills, and avoids treating individuals and context separately. The value of this framework for understanding change with reference to context rather than just individual’s knowledge and skills is demonstrated, particularly with respect to approaches to practice development focused on providing additional training to nurses. (shrink)

Patients in a vegetative state/ unresponsive wakefulness syndrome (VS/UWS) pose ethical dilemmas to those involved. Many conflicts occur between professionals and families of these patients. In the Netherlands physicians are supposed to withdraw life sustaining treatment once recovery is not to be expected. Yet these patients have shown to survive sometimes for decades. The role of the families is thought to be important. The aim of this study was to make an inventory of the professional perspective on conflicts in (...) long-term care of patients in VS/UWS. A qualitative study of transcripts on 2 Moral Deliberations (MD’s) in 2 cases of patients in VS/UWS in long-term care facilities. Six themes emerged: 1) Vision on VS/UWS; 2) Treatment and care plan; 3) Impact on relationships; 4) Feelings/attitude; 5) Communication; 6) Organizational aspects. These themes are related to professionals and to what families had expressed to the professionals. We found conflicts as well as contradictory feelings and thoughts to be a general feature in 4 of these themes, both in professionals and families. Conflicts were found in several actors: within families concerning all 6 themes, in nurse teams concerning the theme treatment and care plan, and between physicians concerning all 6 themes. Different visions, different expectations and hope on recovery, deviating goals and contradictory feelings/thoughts in families and professionals can lead to conflicts over a patient with VS/UWS. Key factors to prevent or solve such conflicts are a carefully established diagnosis, clarity upon visions, uniformity in treatment goals and plans, an open and empathic communication, expertise and understanding the importance of contradictory feelings/thoughts. Management should bridge conflicts and support their staff, by developing expertise, by creating stability and by facilitating medical ethical discourses. Shared compassion for the patient might be a key to gain trust and bridge the differences from non-shared to shared decision making. (shrink)

Early intervention is developed following different types of service organization, which in turn require different professional and family roles. The aim of this study was to compare the perceived satisfaction and family quality of life amongst families receiving early intervention developed at centers in comparison to those receiving the routines-based early intervention in families’ homes, that is a family centered intervention in ecological environments. Under a transformative paradigm, a mixed methods design was used, using the Consumer (...) Report Effectiveness Scale (CRES-4) and the Beach Center Family Quality of Life Scale (FQOLS) and two focus groups as data collection instruments. The sample comprised 166 parents in the quantitative phase and 16 parents in the qualitative phase. Results showed that families receiving routines-based early intervention had greater satisfaction with the service although both groups showed similar scores for family quality of life in most of the analyzed domains. Three dimensions were identified throughout the qualitative phase: problem solving, professional team and service organization. Both the models analyzed have an impact on family quality of life and parents are in general satisfied. Strengths and weaknesses were found related to the problem-solving process, the role of the professional team, family empowerment and the service’s organization. The areas requiring further development are the effective training of professionals focused on family practices, the exchange of information with the family and a more participatory organization that takes parent’s perspectives into consideration. The value given to a combined model is another aspect highlighted in this study, as well as the need for a more agile assessment period to avoid unnecessary delays. (shrink)

Little is known and understood about ethics management or the development of formal, systematic, and goal-directed initiatives to improve ethics in the public relations workplace. This study found little ethics training and written guidelines in the public relations workplace. Organizational ethics initiatives are poorly communicated to practitioners and rely mostly on punitive restraints with little reward for ethical behavior. For many practitioners, ethics is not learned through workplace ethics initiatives but rather is mostly informed by external influences including (...) personal values, family upbringing, and professional work experiences. (shrink)

The increased recognition and reported prevalence of autism spectrum disorders combined with the associated societal and clinical impact call for a broad grassroots community-based dialogue on treatment related ethical and social issues. In these Stony Brook Guidelines, which were developed during a full year of community dialogue with affected individuals, families, and professionals in the field, we identify and discuss topics of paramount concern to the ASD constituency: treatment goals and happiness, distributive justice, managing the desperate hopes for a cure, (...) sibling responsibilities, intimacy and sex, diagnostic ethics, and research ethics. The members of the dialogue core committee included doctors, ethicists, administrators, social workers, ministers, disability experts, and many family members of individuals with autism who were especially engaged in community activities on behalf of their constituency, including siblings, parents, and grandparents. Our guidelines are not based on “top-down” imposition of professional expertise, but rather on a “bottom-up” grass roots attention to the voices of affected individuals and families speaking from experience. These guidelines can inform clinical practice, but they also are meaningful for the wider social conversation emerging over the treatment of individuals with ASD. (shrink)

This study articulates the relational constituents of good care beyond techno‐rational competence. Neoliberal healthcare means that notions of care are readily commodified and reduced to quantifiable assessments and checklists. This novel research investigated accounts of good care provided by nursing, medical, allied and auxiliary staff. The Heideggerian phenomenological study was undertaken in acute medical‐surgical wards, investigating the contextual, communicative nature of care. The study involved interviews with 17 participants: 3 previous patients, 3 family members and 11 staff. Data were (...) analysed iteratively, dwelling with stories and writing and rewriting to surface the phenomenality of good care. The data set highlighted the following essential constituents: authentic care: caring encompassing solicitude (fürsorge); impromptu care: caring beyond role category; sustained care: caring beyond specialist parameters; attuned care: caring encompassing family and culture; and insightful care: caring beyond assessment and diagnosis. The findings are clinically significant because they indicate the importance of nurse leaders and educators harnessing the potential capacity of all healthcare workers to participate in good care. Healthcare workers reported that participating in or witnessing good care was uplifting and added meaning to their work, contributing to a sense of shared humanity. (shrink)

Are children the passive recipients of influence from their parents and from society? Is their development determined by their genes and their neurons, or do they have the capacity to think about and influence their own lives and the world around them? How does their interaction with their social and material worlds support or hinder agency? Arechildren agents, and what do we mean by agency? Children as Agents in Their Worlds aims to answer these questions through a critical psychological and (...) relational approach, while referencing and critiquing a wide range of perspectives from otherdisciplinesincludingsociology, anthropology and education. Greene and Nixon review the pioneering work of scholars of childhood studies and current post-human theories of agency and offer a developmental perspective on the emergence of the sense ofagency and the exercise of agencyin children. They discuss key themes includingagency in families, agency within the school context and with peers, and children as agents in the wider public sphere. They explore agency and diversity, examining sex, age, genetic inheritance and contextual sources of difference, such as social class and geographical location. Offering a stronger theoretical base for research and policy, through a synthesis of both psychological and relational theories,Children as Agents in Their Worlds will be essential reading for students and professionals in developmental psychology, sociology and anthropology, as well as education, childhood studies, children⁰́₉s rights and related fields. (shrink)

In recent years, hospitals, clinics, and professional organizations have with increasing frequency pledged their commitment to “patient-and family-centered care”. The movement toward PFCC is especially pronounced in pediatrics, where the American Academy of Pediatrics has a long-held, explicit commitment to PFCC. However, the unified movement toward PFCC obscures differing conceptions of its purpose. First, patient-centered care, as opposed to provider- or disease-centered care, focuses on increasing patient involvement in care to accomplish two related, but distinct objectives: improving health (...) outcomes and better respecting patients’ wishes. The Institute of... (shrink)