Volume 20, Issue 6, June 2020, Page 65-67.

Despite a century of progress in medical knowledge, many diagnostic odysseys end in disappointment, especially when the child has a developmental disorder. In cases of autism and intellectual disability, relatively few children receive a specific diagnosis, and virtually none of those diagnoses lead to a specific medical treatment. Whole‐genome or ‐exome sequencing offers a quantum leap in the diagnostic odyssey, in that we will always learn something from sequencing—sometimes much more than families bargained for, as discussed elsewhere in this special (...) report. The trick is whether the knowledge gained will help the child and family. A family‐centered approach gives families permission to choose but does not lay all of the responsibility on them. The goal is to pursue the degree of medical diagnostic evaluation that matches the family's values. (shrink)

Background In current Western medical ethics, patient-centered medicine is considered the norm. However, the cultural background of collectivism in East Asia often leads to family-centered decision-making. In Japan, prior studies have reported that family-centered decision-making is more likely to be preferred in situations of disease notification and end-of-life decision-making. Nonetheless, there has been a recent shift from collectivism to individualism due to changes in the social structure. Various personal factors have also been reported to influence moral decision-making. Therefore, (...) this study examined whether the current trend in attitudes of healthcare decision-making in Japan is family-centered or patient-centered among the general public and physicians. In addition, the personal factors that influence this tendency were examined.Methods Three vignettes on disease notification and two vignettes on decision-making during end-of-life care were created, and 457 members of the public and 284 physicians were asked about their attitudes (behavioral intentions) regarding these vignettes.Results Approximately, 95% of physicians were patient-centered in explaining the patient’s severe medical condition. However, approximately 80% of physicians emphasized the wishes of the family over patient wishes when making life-sustaining decisions. Nearly half the general public emphasized the patient’s wishes in the explanation of a severe medical condition and in life-sustaining decisions. In both the public and physician groups, personal factors, particularly the presence or absence of a disease under treatment and prior caregiving experience, influenced ethical attitudes toward medical treatment decisions.Conclusions In relatively low-conflict situations, such as the announcement of a patient’s medical condition, physicians tended to be patient-centered, while they tended to be family-centered in situations of strong conflict in withholding life-sustaining treatment. The fact that personal factors influenced the family-centered response in situations of strong conflict highlights the importance of not only acquiring knowledge of medical ethics but also learning to fairly apply this knowledge in practice. (shrink)

Over the past decade or so, the predominant patient-centered ethos in American bioethics has come under attack by critics who claim that it is morally deficient in certain respects, particularly when viewed in the context of acute-care decisionmaking. One line of criticism has been that the current ethic of patient autonomy gives an individual competent patient far too much decisional authority over the terms of his own treatment so that the patient is at complete liberty to neglect the ways in (...) which his medical decisions can drastically and negatively affect the lives of other family members. Given that family members must help shoulder the financial, emotional, and rehabilitative burdens involved in the patient's care, it has been argued that they too have a legitimate interest in choosing what sort of medical treatment the patient eventually receives. Another closely related line of criticism is that the prevailing focus on patient autonomy gives short shrift to the moral significance of the family as a genuine community. Echoing a view of the person advanced by most communitarian political theorists, some commentators have argued that the patient comes to the clinic so thoroughly embedded in a complex web of familial relationships and obligations that it does not make sense to identify him as the only person in the family to make decisions about treatment. (shrink)

The ongoing Coronavirus disease 2019 (COVID-19) pandemic is disrupting most specialized healthcare services worldwide, including those for high-risk newborns and their families. Due to the risk of contagion, critically ill infants, relatives and professionals attending neonatal intensive care units (NICUs) are undergoing a profound remodeling of the organization and quality of care. In particular, mitigation strategies adopted to combat the COVID-19 pandemic may hinder the implementation of family-centered care within the NICU. This may put newborns at risk for several (...) adverse effects, e.g., less weight gain, more nosocomial infections, increased length of NICU stay as well as long-term worse cognitive, emotional, and social development. This article aims to contribute to deepening the knowledge on the psychological impact of COVID-19 on parents and NICU staff members based on empirical data from the literature. We also provided evidence-based indications on how to safely empower families and support NICU staff facing such a threatening emergency, while preserving the crucial role of family-centered developmental care practices. (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)

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)

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)

It describes and explains the patient-centered model examining and evaluating qualitative and quantitative research. It comprehensively covers the evolution and the six interactive components of the patient-centered clinical method, taking the reader through the relationships between the patient and doctor and the patient and clinician. All the editors are professors in the Department of Family Medicine at the University of Western Ontario, London, Canada.

Background: Frequent exposure to ethical conflict and a perceived lack of organizational support to address ethical conflict may negatively influence nursing family care in the intensive care unit. Research aims: The specific aims of this study were to determine: (1) if intensive care unit climate of care variables (ethical conflict, organizational resources for ethical conflict, and nurse burnout) were predictive of nursing family care and family wellbeing and (2) direct and indirect effects of the climate of care (...) on the quality of nursing family care and family wellbeing. Research design: A cross-sectional, correlational design was used. Participants and research context: Convenience sample of 111 nurses and 44 family members from five intensive care units at a Midwest hospital in the United States. Instruments: The Ethical Conflict Questionnaire-Critical Care Version, Maslach Burnout Inventory-Human Services Survey and Hospital Ethical Climate Scale were used to measure climate of care. The Family-Centered Care-Adult Version and Nurse Provided Family Social Support Scale were family measures of the quality of nursing family care. The Family Wellbeing Index was used to measure family wellbeing. Data analysis: Hierarchical regression and mediation analysis were used to answer the study aims. Ethical considerations: The study was approved by the Institutional Review Board at the study site. Findings: In separate regression models, organizational resources for ethical conflict (β =.401, p =.006) and depersonalization (β = −.511, p =.006), a component of burnout, were significant predictors of family-centered care. In simple mediation analysis the relationship between organizational resources for ethical conflict and family-centered care was mediated by depersonalization (β =.341, 95% confidence interval (.015,.707)). Discussion: Inadequate organizational resources and depersonalization may be related to family care delivery, and present obstacles to family-centered care in the intensive care unit. Conclusion: Further research to explicate the relationships among organizational resources, ethical conflict, burnout, and family-centered care is needed to guide the development of effective interventions that enhance the quality of nursing family care in the intensive care unit. (shrink)

The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature of parental and (...) child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness. (shrink)

ABSTRACT:The notion of stakeholder salience based on attributes (e.g., power, legitimacy, urgency) is applied in the family business setting. We argue that where principal institutions intersect (i.e., family and business); managerial perceptions of stakeholder salience will be different and more complex than where institutions are based on a single dominant logic. We propose that (1) whereas utilitarian power is more likely in the general business case, normative power is more typical in family business stakeholder salience; (2) whereas (...) in a general business context legitimacy is socially constructed; for family stakeholders, legitimacy is based on heredity; and (3) whereas temporality and criticality are somewhat independent in general-business urgency, they are linked in the family business case because of family ties and family-centered non-economic goals. We apply this theoretical framework to position and integrate the contributions to this special section ofBusiness Ethics Quarterlyon “Stakeholder Theory, Ethics, Corporate Social Responsibility, and Family Enterprise.”. (shrink)

The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature of parental and (...) child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness. (shrink)

Political and public debate recently has centered on issues of community, family and culture. What are the boundaries of community, and why is community important? What constitutes a family, and is it the fundamental unit of a stable society? What difference does feminism make in our lives and in society? How do racial and cultural minorities affect culture as a whole? In the Company of Others brings together new and previously published essays by nine distinguished philosophers, who argue (...) these questions from a variety of perspectives. Presenting traditional and non-traditional approaches, their essays challenge and refine recent thinking on issues of contemporary social and political importance. (shrink)

BackgroundThe wellbeing of people living with dementia and their family caregivers may be impacted by stigma, changing roles, and limited access to meaningful opportunities as a dyad. Group therapeutic songwriting and qualitative interviews have been utilized in music therapy research to promote the voices of people with dementia and family caregivers participating in separate songwriting groups but not together as dyads.ProceduresThis study aimed to explore how ten people with dementia/family caregiver dyads experienced a 6-week group TSW program. (...) Dyads participated in homogenous TSW groups involving 2–4 dyads who were either living together in the community or living separately because the person with dementia resided in a care home. The TSW program, informed by personhood, couplehood, family centered and group process frameworks, involved creating original lyrics through song parody and song collage. Qualified Music Therapists facilitated sessions and interviewed each dyad separately. Interviews were analyzed using interpretative phenomenological analysis.FindingsFive recurrent group themes were developed, indicating group TSW: was a positive shared experience, benefiting both members of the dyad and motivating further engagement with music; stimulated mental processes and reignited participants’ interests and skills; provided meaningful opportunities for reflection and connection with memories and life experiences; and prompted interaction and collaboration, leading to social connections, empathic relationships and experiences of inclusion. Participants also highlighted how: the facilitated process supported engagement, highlighting abilities and challenging doubts.ConclusionDyads identified group TSW as an opportunity to recognize strengths, voice ideas and opinions, share meaningful experiences, and do “more with music.” Participants valued TSW as a new, creative and stimulating experience that enabled connection with self and others and led to feelings of pride and achievement. Our findings further recognize how therapeutic intention and approach were reflected in participants’ engagement and responses regardless of dementia stage and type, dyad relationship, or musical background. This research may broaden perspectives and expand understanding about how people with dementia and their family caregivers access and engage in music therapy. (shrink)

Research has consistently documented that the death of a close family member can disrupt a family’s functional equilibrium and has a deleterious effect on adolescents’ adaptation; however, little attention has been paid to behavioral adaptation of adolescents after a loss in a collective setting. Attempting to fill this research gap, the objectives of the current study are: (1) to identify autonomy support profiles based on two centered figures (parents and head teachers) and (2) to examine whether these emerging (...) profiles may moderate the association between the two dimensions of grit (perseverance and consistency) and externalizing problem behavior in Chinese family-bereaved adolescents. A total of 763 family-bereaved adolescents aged from 13 to 18 years (60.3% girls; M age = 15.74; SD = 1.53) were involved in the current study; they were asked to fill a battery of self-report questionnaires. A latent profile analysis revealed three autonomy support profiles: high parental autonomy support–high teacher autonomy support (HPHT; n = 598), high parental autonomy support–low teacher autonomy support (HPLT; n = 34), and low parental autonomy support–low teacher autonomy support (LPLT; n = 131). Moreover, results from linear regression analyses, after controlling for relevant bereavement variables, sociodemographics, and social desirability, showed that perseverance and consistency were negatively related to externalizing problem behavior for adolescents within the HPHL profile; nevertheless, the association between perseverance and externalizing problem behavior turned to be positive for adolescents within the HPLT profile. The current study sheds light on the variability of the association between grit and family-bereaved adolescents’ behavioral adaptation and further enriches the beneficial effect of autonomy support on adaptive functions in a collective cultural setting. The interplay between grit and autonomy support from parents and teachers has a significant influence on buffering externalizing problem behavior among family-bereaved adolescents. (shrink)

Harris develops a neo-Aristotelian account of practical and moral reasoning that does account for such decisions of good people. On this account moral reasoning is part of a larger practice of practical reasoning and is viable only if it integrates smoothly into this larger practice. Good people, on Harris’s view of them, have a number of kinds of concerns that are integrated in their practical reasoning dispositions. Persons with “integrity in the thick sense” care about their family members, their (...) friends, about less intimate members of their communities and about “respectable” strangers from outside the community; they also care about having interesting things to do and meaningful work, and about doing some things in an excellent way. Insofar as people really care about any of these things, the satisfaction of the concerns produces a satisfying and meaningful life for the agent. So Harris’s theory is a kind of eudaimonism, though he points out that what people are seeking in pursuing these ends is the ends themselves—say, the well-being of friends or of respectable strangers or the well-turned musical phrase—and not something in addition called “happiness” to which these ends are means. (shrink)

We explored the division of parenthood in Chinese families with adolescents by identifying the parental involvement patterns in the data obtained from 786 pairs of parents. Division-of-parenthood patterns were created via factor mixture modeling using self-reported three dimensions of father and mother involvement. Three differential division-of-parenthood patterns were identified: (a) parent-cooperation pattern, where moderate and equivalent involvement existed between mothers and fathers; (b) mother-dominated pattern, where mother involvement was particularly greater than father involvement; and (c) father-dominated pattern, where father involvement (...) was particularly greater than mother involvement. Families were more likely to be in the mother- or the father-dominated pattern as their levels of positive coparenting behaviors increased. By contrast, as the levels of paternal conflict behavior increased, families were likely to be in the mother-dominated pattern. This study highlighted parents’ individual parenting role, the diverse division-of-parenthood patterns in the family, and the important role of coparenting behavior. (shrink)

The philosophy of family‐centered care (FCC) promotes partnerships between families and staff to plan, deliver, and evaluate services for children and has been officially adopted by a majority of pediatric hospitals throughout North America. However, studies indicated that many parents have continued to be dissatisfied with their decision‐making roles in their child's care. This is particularly salient for parents of children with chronic ongoing complex health problems. These children are dependent upon medical technology and require frequent hospitalizations during which (...) parents must contribute to difficult decisions regarding their child's care. Given this clinical issue, an alternative theoretical perspective was explored to redress this problem. Pierre Bourdieu's theoretical concepts of field, capital, and habitus were used to analyze the hierarchical relationships in pediatric acute care hospitals and to design a briefing intervention aimed at improving parents' satisfaction with decision making in that health care setting. (shrink)

In chapter two of The School and Society, entitled "The School and the Life of the Child," the renowned American philosopher John Dewey demonstrates how the model of the "ideal home" can impart lessons about a model of the "ideal school." It is argued that education should give direction to the student's natural impulses, just as the concerned parent guides the growth of the child. There are at least two ways in which to interpret this argument. One is that home (...) schooling is the ideal form of early education. The other is that school life should emulate family life. Though advocates of home schooling would prefer the former account, the case is difficult to make, for Dewey rarely recommended specific institutions or practices and the interpretation does not align with the book's other thesis that the classroom should be a microcosm for the best that the community has to offer. So, consistent with the overall theme of the work, it is the latter reading, viz., that school life should resemble family life, I contend, that proves more persuasive. School teachers have an ethical responsibility to care for their students' interests and, ideally, to provide a quality of mentorship approaching, if not on par with, that delivered by concerned parents. However, unlike student-centered education, in which educators curry favor with students by appealing to their native interests, what I call Dewey's model of "education as family life" imposes discipline on the student's natural desires, directing them in ways that are intended to enrich their future adult lives. (shrink)

The failure to maintain a canonical Christian understanding of the family as a microcosm of the church oriented toward deification instead of a microcosm of society aimed at social ends has opened Christians up to an uncritical adoption of non-Christian approaches in medical decision making. This article begins by identifying the Christian family crisis not as a liberal versus conservative debate centered on the form and function of the family, but more fundamentally as an ecclesial versus sociological (...) understanding of the Christian family. The article presents a historical sketch of the circumstances that have led to this contemporary crisis in the Western Christian family, followed by an analysis that provides a canonical account of the Christian family as exemplified in the thought of Gregory the Theologian. This article concludes by looking at the specific issue of labor and delivery in the United States, and the implications for a canonical Christian understanding of labor and delivery in light of contemporary medical practices. (shrink)

This study investigated whether school closures and health-related uncertainties in the early phases of the COVID-19 pandemic posed risk factors for adolescents’ mental health and whether perceived social support by parents, teachers, and friends functioned as protective factors. In particular, we argued that perceived social support would buffer negative associations between educational and health concerns and mental health. Based on a person-centered approach, we first examined resilience profiles. These profiles reflect configurations regarding the levels of these risk and protective factors (...) and levels of mental health. Second, we analyzed whether these risk and protective factors predicted adolescents’ mental health differently by using a variable-centered approach. The sample consisted of 1’562 adolescents in lower and higher secondary education from three regions: German-speaking part of Switzerland, N = 486; Italian-speaking part of Switzerland, N = 760; and Northern Italy N = 316. Results from the person-centered approach revealed three latent profiles characterized by low, average, or high resilience. Lower resilience was associated with higher educational concerns, lower perceived social support, and lower mental health, while high resilience was characterized by lower concerns, higher support, and higher mental health. Importantly, educational concerns varied more between profiles than health concerns, and perceived teacher and family support varied more than perceived friend support. Corroborating these findings, the variable-centered approach revealed that educational concerns were a stronger predictor than health concerns and pointed to a higher relative importance of perceived family support for adolescents’ mental health relative to perceived teacher and friend support. Taken together, the findings suggest that adolescents’ educational concerns and perceived family support, respectively, were stronger risk and protective factors for their mental health during school closures related to the COVID-19 pandemic. Finally, adolescents from regions being more exposed to the COVID-19 pandemic, namely, Italian-speaking part of Switzerland and Northern Italy, were more likely classified in the low or the average rather than in the high resilience profile compared to students from the region with lower exposure, that is, the German-speaking part of Switzerland. (shrink)

The goal of this paper is to propose a relational turn in healthcare professionalism, to improve the responsiveness of both healthcare professionals and organizations towards care of patients, but also professionals. To this end, it is important to stress the way in which difficult situations and vulnerability faced by professionals can have an impact on their performance of work. This article pursue two objectives. First, I focus on understanding and making visible shared vulnerability that arises in clinical settings from a (...) triple perspective: patient and family, health professionals, and institutions. Second, to address this challenge for professionalism, in this paper I articulate the term "relational centered-patient professionalism", which has two main axes. The relational approach means taking into account how the relationships among professionals, patients and institutions determine the constitution and evolution of those professional values. The focus on patient centered care is indispensable, because it is the ultimate goal pursued by the development of these professional values, and must always be at the center. (shrink)

My mother is a lousy cook. She has many other fine talents, but creating an attractive, tasty meal has always been beyond her reach. Even so, breakfast and dinner were daily rituals in my childhood home for which attendance was required. Just as we kids had no end of complaints about having to show up for meals (instead of getting to sleep in before school or hang with friends in the evening), we also took it for granted that my mother (...) made every one of those meals, day after day, year after year. Much later, I came to realize that not only did she make the food, but by constructing these gatherings at the kitchen table, she made our family. Like most mothers in the world, her daily work at the stove created the food-centered events around which our family grew, bonded, fought, and shared, and to which we return periodically to get reacquainted. Even as “women’s work” is expanded and redefined, feeding the family remains a central responsibility in families of all kinds. Lang Bui, owner of the Ypsilanti-based Vietnamese restaurant, Da Lat, knows all about the value of food and cooking to the creation of family. She does most all of the wonderful cooking for this low-priced, high-quality restaurant, while her two daughter-in-laws wait on the tables. (Lately, her one-year-old granddaughter also adds to the family atmosphere, toddling quietly about the front of the dining area.) Their efforts have.. (shrink)

The gender perspective theory is a framework that assists Peace and Conflict Studies (PACS) scholars and practitioners to develop less violent and more equal societies. In Colombia, this theory is under attack from Protestant Christian churches that have produced the category of gender ideology to delegitimize the gender perspective. In this article, we analyse the narratives used by members of the Protestant Christian churches and conservative political leaders in Colombia to create the category of gender ideology. This new concept became (...) a central element both in forging the identity of Protestant Christian congregations and in opposing the peace agreement reached by the Colombian government and FARC guerrillas. We discuss how family plays a significant role in the development of the gender ideology. Finally, we contend that gender ideology is a social category that is gaining ground in legal and academic circles in Colombia, forming an identity for Christian conservatives centered in a Manichean world that excludes people who traditionally have been marginalized in Colombian society. (shrink)

BackgroundHospitalized older adults frequently have impaired cognition and must rely on surrogates to make major medical decisions. Ethical standards for surrogate decision making are well delineated, but little is known about what factors surrogates actually consider when making decisions.ObjectivesTo determine factors surrogate decision makers consider when making major medical decisions for hospitalized older adults, and whether or not they adhere to established ethical standards.DesignSemi-structured interview study of the experience and process of decision making.SettingA public safety-net hospital and a tertiary referral (...) hospital in a large city in the Midwest United States.ParticipantsThe study included 35 surrogates with a recent decision-making experience for an inpatient aged 65 or older.MeasurementsThe key factors that surrogates considered when making decisions. Interview transcripts were coded and analyzed using the grounded theory method of qualitative analysis.ResultsSurrogates considered patient-centered factors and surrogate-centered factors. Patient-centered factors included: respecting the patient’s input, using past knowledge of the patient to infer the patient’s wishes, and consider ing what is in the patient’s best interests. Some surrogates expressed a desire for more information about the patient’s prior wishes. Surrogate-centered factors included: surrogate’s wishes as a guide, surrogate’s religious beliefs and/or spirituality, surrogate’s interests, and family consensus.ConclusionOur study indicates that surrogate decision making is more complex than the standard ethical models, which are limited to considerations of the patient’s autonomy and beneficence. Because surrogates also imagine what they would want under the circumstances and consider their own needs and preferences, models of surrogate decision making must account for these additional considerations. Surrogates’ desire for more information about patients’ preferences suggests a need for greater advance care planning. (shrink)

An individualized and coherent life story has been described as the form of identity that is required by highly mobile individualistic Western societies, whereas more family-oriented, traditional societies require more role-based, synchronic identities. Therefore entire life narratives can be expected to be more coherent and to contain more autobiographical arguments that contribute to life narrative coherence in individualistic cultures. This cultural group difference is expected to be mediated by individuals’ conformity to their respective cultural normative concept of biography. We (...) tested these expectations by eliciting entire life narratives and cultural life scripts from students of technical universities from provincial and metropolitan Turkey, as well as from students with a Turkish migrant and a German background in urban Germany (N= 96). Expectations were confirmed for global life narrative coherence and autobiographical arguments with self-event connections. Conformity with a normative concept of biography indeed mediated cultural influences on life narrative coherence. Life narratives from Turkey also contained more family-related events and, unexpectedly, were more negative. Thus creating a coherent life narrative is more typical for cultures that require autonomous, individualized selves rather than for cultures requiring more related selves, reflecting the life story’s suitability for expressing individualized identities and its lesser suitability for expressing interdependent identities. (shrink)

BackgroundDepression and alcohol dependence are among the most prevalent psychiatric disorders that commonly co-occur. Therefore, gaining a better grasp of factors related to this comorbidity is particularly interesting for clinicians. Past research has highlighted the significant role that time perspective and family history of alcohol dependence play in the occurrence of depression and AD. However, much remains unexplored in the understanding of the association between them. This study explored how temporal profile and other sociodemographic characteristics of patients diagnosed with (...) AD impact the severity of depression and AD in them.MethodsThis study was multi-centered, including 381 patients. Cross-sectional information was collected from both inpatient and outpatient psychiatric clinics in China. Data were acquired using validated self-report scales, including Michigan Alcoholism Screening Test, Zung Self-Rating Depression Scale, and Zimbardo Time Perspective Inventory-Chinese version. Multiple linear regression analyzes were conducted to control social demographic variables and construct prediction models to inspect the influence factors of variables. Moderation models were constructed to inspect further interplay between variables using hierarchical regression and PROCESS Macro.ResultsResults showed that of all the patients in Chinese psychiatry clinics diagnosed with AD according to the International Classification of Diseases-10, 59.9% met the criteria of depression according to the questionnaire, and time perspective was correlated with the severity of depression. Furthermore, using regression analysis, we found that time perspective and depression could predict AD severity. The moderating role of a past negative time perspective and FH was confirmed between depression and AD. We found that, in our study, only in patients with FH and relatively moderate to high scores of past negative time perspective could the severity of depression predict the severity of AD. Therefore, during the treatment and care of patients with AD, their depression level, time perspective score, and FH should be considered. (shrink)

This paper explores the ethics of deceased‐directed donation (DDD) and brings a unique perspective to this issue—the relevance of providing family‐centered care and culturally sensitive care to deceased donors, potential recipients, and their families. The significance of providing family‐centered care is becoming increasingly prevalent, specifically in pediatric healthcare settings. Therefore, this topic is especially relevant to those working with and interested in pediatrics. As the world is becoming more diverse with globalization, assessing the cultural aspect of the ethics (...) of DDD is increasingly salient. We provide a brief overview of DDD across the globe, review prominent arguments both for and against DDD, consider family‐centered and culturally specific considerations, and offer considerations for the development of a policy or guideline. We determine that the practice of DDD is ethically defensible in certain circumstances and congruent with providing both family‐centered and culturally sensitive care. Our analysis is relevant to any country with a diverse population and any healthcare provider or institution that operates under a framework of family‐centered care, such as those in pediatric hospitals. (shrink)

The increasing accuracy of algorithms to predict values and preferences raises the possibility that artificial intelligence technology will be able to serve as a surrogate decision-maker for incapacitated patients. Following Camillo Lamanna and Lauren Byrne, we call this technology the autonomy algorithm. Such an algorithm would mine medical research, health records, and social media data to predict patient treatment preferences. The possibility of developing the AA raises the ethical question of whether the AA or a relative ought to serve as (...) surrogate decision-maker in cases where the patient has not issued a medical power of attorney. We argue that in such cases, and against the standard practice of vesting familial surrogates with decision making authority, the AA should have sole decision-making authority. This is because the AA will likely be better at predicting what treatment option the patient would have chosen. It would also be better at avoiding bias and, therefore, choosing in a more patient-centered manner. Furthermore, we argue that these considerations override any moral weight of the patient’s special relationship with their relatives. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Managing the Transition from Patient-Centered Care to ProtocolDavid SlakterI learned that I would need a kidney transplant in the summer of 2015. This was not a complete surprise to me, as I had been subjected to a number of tests and invasive procedures to investigate nephritis since I was a child. I had heard similar stories of clinicians performing repeated tests on my father for similar reasons without any (...) conclusions. Following my recommendation for transplant and consultation with genomics specialists, the cause of my kidney failure was determined to be Alport syndrome. What made Alport syndrome so difficult to diagnose in my case was that the associated mutation is a rare, autosomal-dominant one that has only recently been associated with the condition.After reviewing the data on survival rates for transitioning to dialysis versus a transplant, my family and I then considered the success rates for living versus cadaver donors, and the success rates at various transplant centers. The current data favor the long-term outcomes of transplant over dialysis and living over cadaver donors. Since we had decided to focus on searching for a live donor, my nephrologist recommended contacting Renewal, an organization that specializes in connecting those in need of a kidney transplant with live donors and providing support for donors to make the donation process less burdensome.On Renewal’s recommendation, my family and friends reached out across their social networks to search for potential donors. Many of those tested for compatibility were eliminated on basic matching criteria, others due to previously undiagnosed medical problems. Finally, the wife of a childhood friend came forward as an eligible donor and was also an incredibly close match on the antigens tested for kidney transplants.Having a living donor who was also a friend made the transplant experience somewhat less intimidating than it might have been. It meant the transformation of an existing relationship with someone already close to me, with fewer open questions about what may have motivated them to be so generous than if the donor had been someone I did not know. It also meant our families could be together in the waiting room, and that we shared in each other’s recoveries.Life post-transplant has been a significant improvement from what it was like immediately beforehand. Before my transplant, I regularly weighed food and consulted nutrition charts to gauge how much potassium I was consuming. To prevent too much potassium from building up in my bloodstream, I had to take sodium polystyrene [End Page 111] regularly. As one might guess from the name, it tastes much like burnt Styrofoam, and I could only ingest it with copious amounts of fruit-flavored syrup (strawberry covered up the awful flavor the best). There are other potassium binders on the market now, so fewer people with kidney failure will likely need to engage in such gustatory experimentation.I was also able to engage in more activities than what was possible even years before my transplant. I had long experienced difficulty with aerobic exercises, but assumed the reason was merely being out of shape. Though I have always walked regularly, even the one-mile walk from my office to my apartment had become a chore by the end. Within a few months after my transplant, I was riding a bicycle all over NYC, from Harlem to Brooklyn and back regularly, and hiking trails in nearby state parks. I began sessions with a personal trainer and attained a level of fitness I had not reached since I played soccer as a child.The transition from personalized care to one more driven by protocol has been a surprising and challenging aspect of the transplant process. While my previous experience with medical treatment has been individual meetings with physicians, my post-transplant care is managed by a team of nephrologists and other specialists in transplant care. My initial transplant nephrologist was automatically assigned to me. Because the standard of care for transplant patients is often driven by protocol, my assigned nephrologist recommended a biopsy on my transplanted kidney due to results in my recent lab tests. When pressed on the necessity of a biopsy in my case versus... (shrink)

Transfers of critically ill neonates are frequent phenomena. Even though parents’ participation is regarded as crucial in neonatal care, a transfer often means that parents and neonates are separated. A systematic review of the parents’ experiences of neonatal transfer is lacking. This paper describes a meta‐study addressing qualitative research about parents’ experiences of neonatal transfer. Through deconstruction and reflections of theories, methods, and empirical data, the aim was to achieve a deeper understanding of theoretical, empirical, contextual, historical, and methodological issues (...) of qualitative studies concerning parents’ experiences of neonatal transfer over the course of this meta‐study (2000–2017). Meta‐theory and meta‐method analyses showed that caring, transition, and family‐centered care were main theoretical frames applied and that interviewing with a small number of participants was the preferred data collection method. The meta‐data‐analysis showed that transfer was a scary, unfamiliar, and threatening experience for the parents; they were losing familiar context, were separated from their neonate, and could feel their parenthood disrupted. We identified ‘wavering and wandering’ as a metaphoric representation of the parents’ experiences. The findings add knowledge about meta‐study as an approach for comprehensive qualitative research and point at the value of meta‐theory and meta‐method analyses. (shrink)

Decolonizing the Body explores the traumatic physical and emotional effects of colonization and systemic racism on the body and mind. Written by a woman of color for women of color, it offers body-centered somatic practices to free women from internalized oppression, so they can reclaim confidence, dignity, and self-worth.

The main purpose of the present paper is to introduce and explicate the position and services of the most brilliant character –Etemad-Al-doleh of the ruling era of Shah Abbass the first called Khajeh Mirza Hatam Beig Ordoobadi and his son-Talib Khan. Due to Shah's authority in this era, the paramount duty which can be assigned to the position of Etemad-Al-doleh was to control the geostrategy and military actions.After Shah Abbass, the first-and due to the fact that the kings were brought (...) up in seraglios and were far from gaining experience to manage the country, Etemad- Al-doleh developed his position so increasingly. According to the historical sources belonging to the Safavid era and itinerary of European, we can easily find out that Etemad-Al-doleh found his way into any governmental affairs. Based on the outstanding position of Hatam Beig and his son, it can be claimed that the social position is not considered just to promote the military officers ' ranks in Shah- Abbass era. Unlike the Safavi's point of view, the term of virtue- centered community was limited to recruiting the Georgian servants called "the establishment of the third military force". In the first decades, Etemad-Al-doleh enjoyed a valid social position and a proper background in tribunal. Studying the lives of supreme ministers shows us that the majority of them had court-based and military social origins. (shrink)

Lovescapes introduces the reader to the various meanings and manifestations of love and its many cognates such as compassion, caring, altruism, empathy, and forgiveness. It addresses how love and compassion have been understood in history and the religions of the world. It goes on to explore the ways that our environments and heredity influence our capacity to love and suggests ways to cultivate love and compassion in one's life. The book shows how the values of love and compassion are integral (...) to finding humane solutions to the daunting problems we face as individuals, as a human family, and as an earth community--a world in crisis. (shrink)

Intensive care nursing is prone to episodic anxiety linked to patients’ immediate needs for treatment. Balancing biomedical interventions with compassionate patient‐centred nursing can be particularly anxiety provoking. These patterns of anxiety may impact compassion and patient‐centred nursing. The aim of this paper is to discuss the application of Bowen Family Systems Theory to intensive care nursing, mapping a framework to support critical care nurses’ well‐being and, consequently, the quality of care they provide. This article is founded on (...) research, theoretical papers and texts focused on Bowen Family Systems Theory (BFST), and findings from a constructivist study on patient‐centred nursing and compassion in the intensive care unit. The goal of Bowen Family Systems Theory is to empower individuals, decreasing blame and reactivity. Bowen Family Systems Theory can be applied to the sometimes intimate relationships that develop in this environment, aiding understanding of nurses’ experience of compassion satisfaction and fatigue. Where organizational factors and management styles fall short in supporting critical care nurses to meet expectations, BFST can offer a perspective on the processes that occur within the intensive care unit, impacting nurse well‐being and quality of care. This paper makes plain the importance of understanding the anxiety that occurs within the intensive care unit as a system, so that individuals, such as critical care nurses, can be supported appropriately to ensure nurse well‐being and quality care. (shrink)

The paediatric intensive care unit (PICU) is a high-stress environment for parents, families and health care professionals (HCPs) 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 (FCC) 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)

What should Japanese doctors do when asked by a patient for active voluntary euthanasia, when the family wants aggressive treatment to continue? In this paper, we present the results of a questionnaire survey of 366 Japanese doctors, who were asked how they would act in a hypothetical situation of this kind, and how they would justify their decision, 23% of respondents said they would act on the patient’s wishes, and provided reasons for their view; 54% said they would not (...) practice VE, either because they were opposed to VE as such, or because they believed that the wishes of the patient’s family should be respected.Analysis of these responses yielded the following results: Doctors willing to respect the patient’s wishes defended their decision by highlighting the significance of patient autonomy and the patient’s exclusive ownership of his or her life; doctors unwilling to act on the patient’s wishes fell into two broad categories — those who based their reasoning on the family’s objections, and those who provided other reasons for refusing VE. Respondents who said they would not comply with the patient’s wishes because of family objections provided the following kinds of rationale: doctors have serious responsibilities not only to the patient, but also to the patient’s family; the importance of the family-doctor relationship; fear of lawsuits for murder and related criminal offences; the need for agreement among all those affected by the decision, and the belief that the patient’s life is not his or her own, but the family’s. Respondents who gave non-family centred reasons for not complying with the patient’s wishes pointed to values such as the sanctity of life, or the importance of a natural deathIn the remainder of this paper, we discuss the implications of a family-centred approach to VE. (shrink)