Most donated organs in the United States come from brain dead donors, while a small percentage come from patients who die in “controlled,” or expected, circumstances, typically after the family or surrogate makes a decision to withdraw life support. The number of organs available for transplant could be substantially if donations were permitted in “uncontrolled” circumstances–that is, from people who die unexpectedly, often outside the hospital. According to projections from the Institute of Medicine, establishing programs permitting “uncontrolled donation after (...) circulatory determination of death,” or uDCDD, throughout the United States has the potential to provide 22,000 more donation opportunities annually. In contrast, U.S. controlled donation after circulatory determination of death, or cDCDD, cases have increased progressively over the past decade from 87 to 848 donors, but currently account for only 10.6 percent of all deceased donors. Following the IOM recommendations, several projects exploring the feasibility of uDCDD were funded by the federal government, including a grant from the Health Resources and Services Administration that supported a pilot project in New York City in which the authors of this article participated.A key feature of our protocol, and indeed of many uDCDD protocols, is the initiation of preservation methods such as chest compressions and extracorporeal membrane oxygenation shortly after death in order to perfuse and preserve the donor's organs. Critics of uDCDD argue that the means of determining death deviates from generally ascribed principles. They assert that reinstituting circulation in order to preserve organs has the effect of “undoing” the prior determination of death. The result is that cDCDD is widely accepted and practiced routinely even though it only marginally increases the number of organs available for transplantation, and uDCDD is widely considered unacceptable despite being ethically embraced and proven to significantly increase organ donation opportunities in other countries. This article explores the evolution of this counterintuitive state of affairs and calls for a policy that, in line with the IOM report, allows for both cDCDD and uDCDD protocols. (shrink)

How do we deal with difference personally, interpersonally, nationally? Can we weave a cohesive social fabric in a religiously plural society without suppressing differences? This collection of significant essays suggests that to truly honour differences in matters of faith and religion we must publicly exercise and celebrate them. The secular/sacred, public/private divisions long considered sacred in the West need to be dismantled if Canada (or any nation state) is to develop a genuine mosaic that embraces fundamental differences instead of a (...) melting pot that marginalizes. An ethics of difference starts with a recognition of difference, not as deviance or deficit that threatens but as otherness to connect with, cherish, and celebrate. The book begins with the suggestion that our inability to come to terms with social plurality is not fundamentally the fault of religious differences, and that a public/private split inadequately deals with matters of basic difference. It then explores how encouraging people to live out their respective faiths may open new possibilities for respectful, honourable, and just negotiations of contemporary dilemmas arising out of the multicultural fabric of Canadian life. Towards an Ethics of Community introduces readers to some of the most challenging and divisive dilemmas we face in this increasingly pluralistic, postmodern world — issues such as family and domestic violence, Aboriginal rights, homosexuality and public policy, and female genital mutilation. This is a book truly global in scope and significance. (shrink)

This short article provides an overview of the series of eugenic family studies that began in the 1870s in the United States and that were influential in establishing eugenics as a 20th-century movement and ideology.

Charney argues that the presence of inherited epigenetic effects makes twin, family, and adoption studies obsolete. This argument relies on both a faulty characterization of these studies and indirect comparisons of DNA and factors. I argue that twin and family studies will in fact serve a necessary and vital role in the study of epigenetic and neogenetic processes.

This article focuses on the influence of male role models on the lives of adolescents in the U.S. National Longitudinal Lesbian Family Study. Half of the adolescents had male role models; those with and those without male role models had similar scores on the feminine and masculine scales of the Bem Sex Role Inventory, as well as on the trait subscales of the State-Trait Personality Inventory and the Child Behavior Checklist. A positive association was found between feminine gender role (...) traits and curiosity, and a negative correlation between this trait and internalizing problem behavior; these associations were independent of the gender of the adolescents and the presence of male role models. In sum, the absence of male role models did not adversely affect the psychological adjustment of adolescents reared by lesbian mothers. (shrink)

The objective of the study was to investigate the relationship between childhood IQ of parents and characteristics of their adult offspring. It was a prospective family cohort study linked to a mental ability survey of the parents and set in Renfrew and Paisley in Scotland. Participants were 1921-born men and women who took part in the Scottish Mental Survey in 1932 and the Renfrew/Paisley study in the 1970s, and whose offspring took part in the Midspan Family study in (...) 1996. There were 286 offspring from 179 families. Parental IQ was related to some, but not all characteristics of offspring. Greater parental IQ was associated with taller offspring. Parental IQ was inversely related to number of cigarettes smoked by offspring. Higher parental IQ was associated with better education, offspring social class and offspring deprivation category. There were no significant relationships between parental IQ and offspring systolic blood pressure, diastolic blood pressure, cholesterol, glucose, lung function, weight, body mass index, waist hip ratio, housing, alcohol consumption, marital status, car use and exercise. Structural equation modelling showed parental IQ associated with offspring education directly and mediated via parental social class. Offspring education was associated with offspring smoking and social class. The smoking finding may have implications for targeting of health education. (shrink)

Though only one component product of the larger eugenics movement, the eugenic family study proved to be, by far, its most potent ideological tool. The Kallikak Family, for instance, went through eight editions between 1913 and 1931. This essay argues that the current scholarship has missed important ways that the architects of the eugenic family studies theorized and described the subjects of their investigation. Using one sparsely interrogated work and one previously unknown eugenic family study (...) from the Southern Plains, this essay aims to introduce “environment” as a schema that allows for how the subjects of the eugenic family study were conceptualized with respect to their surroundings. Geospatially and environmentally relevant constructions of scientific knowledge were central to the project of eugenics during its formative years, but remain largely and conspicuously absent from the critical literature which engages this project to separate the fit from the unfit in American society. The dysgenic constituted a unique human geography, giving us significant insight into how concatenations of jurisprudence as well as cultural and social worth were tied to the land. (shrink)

The informed consent process provides protection by ensuring that potential research subjects understand the goals of the research project they are being asked to voluntarily partake in as well as the risks associated with the study. We examined subjects' comprehension and ability to identify issues explicitly raised during the consent process that was conducted as part of their participation in a genetic family study (GFS). We employed cross-sectional design by providing a short, self-administrative questionnaire to 246 participants recruited from (...) families enrolled in the Extended Family Investigation of Nephropathy and Diabetes (EFIND) study conducted at the University of Texas Health Science Center. Participants responded to the questionnaire directly after their enrollment in the EFIND study. The questionnaire consisted of multiple-choice questions and focused on the understanding of the purposes, procedures, and risks associated with their participation in the EFIND study. These questions were formulated to reflect basic information presented to subjects through the consent process. Responses to questions were expressed as percentages, placing equal weight on each response. Participants were Mexican-American, 62.3% female and averaged 35.2 ± 12.7 years old (range: 18-76). Our findings showed that the average comprehension score was 58. About 30% of the participants did not know the name of the study, and 70% did not identify all elements related to the study procedures. The most striking finding was the lack of understanding concerning the social risks associated with participation in EFIND. While 35.1% of participants identified all potential physical risks, only 1.3% could identify all of the social risks. Our findings showed that participants comprehension score was significantly associated with their level of education and income. We conclude that using the informed consent process to communicate research social risks to subjects participating in GFS has some limitations. Future research directed at improving risk communications to subjects of low socioeconomic levels participating in genetic research is justified. (shrink)

This paper evaluates the ongoing Finnish Adoptive Family Study of Schizophrenia. The Tienari, Lahti et al. study is the most recent attempt to use adoptees as a way of testing the hypothesis that schizophrenia carries a genetic component, and the purpose here is to present what is probably the first in-depth critical analysis of its findings. The published reports of Tienari and associates are the primary focus of analysis, while problems with other schizophrenia adoption studies using similar research (...) designs are also discussed. Because of factors including the selective placement of adoptees, the low variance explained by the two major hypothesized predictor variables for schizophrenia, the invalidity of the schizophrenia spectrum concept, and the failure to find an index schizophrenia rate greater than general population expectations, it is concluded that the Finnish study cannot be regarded as having produced evidence in favor of the genetic theory of schizophrenia. (shrink)

Data from 949 families of Caucasian and 400 families of Japanese ancestry who took part in the Hawaii Family Study of Cognition were used to ascertain the associations of parental cognitive ability, parental education and paternal occupation with offspring cognitive ability. In particular, analyses were focused on testing the possible moderating effects of parental socioeconomic status on the familial transmission of cognitive abilities. Parental cognitive ability was substantially associated and parental education and paternal occupation only trivially associated with offspring (...) performance. In contrast to the findings of Turkheimer etal. (2003), there was no evidence in these data that familiality for cognitive abilities was lower in the lower as opposed to upper levels of socioeconomic status. These results were consistent across measures, ethnicity and sex of offspring. (shrink)

This research aims to monitor the current situation of confinement in Spanish society motivated by COVID-19 crisis. For this, a study of its socio-family, psychological and educational impact is conducted. The sample (N= 165 families, 89.1% nuclear families with children living in the same household and 20.5% with a relative in a risk group) comes from the Aragonese region (Spain). The instruments used are: Beck-II Depression Inventory (BDI-II); Baron-Cohen and Wheelwright’s Empathy Quotient (EQ) with its cognitive empathy subscale, as (...) well as an ad-hoc questionnaire, reviewed by a panel of experts, to learn about socio-personal, family and housing conditions, use of technology, involvement in school tasks and household, and working condition. The multiple regression analysis results show that the anxiety derived from the current situation is explained in 23.1% (p< 0.001) by the variables: gender (t = -2.31,p= 0.022), level of Internet consumption (t = 2.139,p= 0.034), increase of family conflicts (t = 2.980,p= 0.003) and help with school tasks (t = 2.980,p= 0.040). On the other hand, cognitive empathy is explained in 24.6% (p< 0.001) by the variables: gender (t = -4.690,p< 0.001) and mother’s hours of teleworking (t = 2.101,p= 0.037). All this leads us to conclusions related to preventive systems of social, psychological, and educational aspects to better serve families. These conclusions can be also be transferred to the future with an inclusive care to family settings from those three parameters. (shrink)

Corporate governance is increasingly becoming an issue of global concern, not least because we are more and more living in a corporate world that transcends international boundaries. The main purpose and motivation of this study is to determine how the international community should motivate businesses in fostering exemplary corporate governance, therefore eliminating obstacles to ethically exemplary behavior. The empirical approach utilized here has been applied to 161 businesses, both listed and over-the-counter (OTC) companies, with the results indicating that ethical considerations, (...) corporate governance and organizational performance are inextricably linked and, to an extent, demonstrably proportional. This study also indicates a major finding that family management is a significant mediating variable of the ethical considerations of corporate governance and organizational performance. Finally, this study has developed an operational model of ethical considerations of corporate governance as a consultancy aid for businesses that wish to implement and/or boost their performance in respect to corporate governance. (shrink)

Background Decisions on limiting life-sustaining treatment for patients in the vegetative state (VS) are emotionally and morally challenging. In Germany, doctors have to discuss, together with the legal surrogate (often a family member), whether the proposed treatment is in accordance with the patient's will. However, it is unknown whether family members of the patient in the VS actually base their decisions on the patient's wishes. Objective To examine the role of advance directives, orally expressed wishes, or the presumed (...) will of patients in a VS for family caregivers' decisions on life-sustaining treatment. Methods and sample A qualitative interview study with 14 next of kin of patients in a VS in a long-term care setting was conducted; 13 participants were the patient's legal surrogates. Interviews were analysed according to qualitative content analysis. Results The majority of family caregivers said that they were aware of aforementioned wishes of the patient that could be applied to the VS condition, but did not base their decisions primarily on these wishes. They gave three reasons for this: (a) the expectation of clinical improvement, (b) the caregivers' definition of life-sustaining treatments and (c) the moral obligation not to harm the patient. If the patient's wishes were not known or not revealed, the caregivers interpreted a will to live into the patient's survival and non-verbal behaviour. Conclusions Whether or not prior treatment wishes of patients in a VS are respected depends on their applicability, and also on the medical assumptions and moral attitudes of the surrogates. We recommend repeated communication, support for the caregivers and advance care planning. (shrink)

The concept of responsible ownership was originally developed with reference to large, publicly held firms. However, the relevance of small- and medium-sized closely held firms, such as family firms, in all economies and the specific governance and organisational characteristics of these firms require further examination of the responsible ownership concept and its operationalisation. Based on the existing literature, we define the construct of responsible family ownership to fill this gap in responsible ownership theory. We propose a scale that (...) can be used to assess the responsible family ownership construct in small- and medium-sized family enterprises. The data used in this exploratory study were collected in an ad hoc survey answered by a representative sample of 84 small- and medium-sized family enterprises. The study contributes to the responsible ownership literature by presenting the responsible family ownership construct, a key driver of balance in family and firm systems that is therefore critical to the health of small- and medium-sized family enterprises. In addition, a scale is proposed as a means to operationalise the construct and to derive practical implications for the governance of this kind of firms. (shrink)

Objectives: Childhood cancer is a life-threatening disease that poses significant challenges to the life of the diagnosed child and his/her family members. Based on the ABCX-model, the aim of the current study was to explore the association between family functioning, cancer appraisal and the individual adjustment of patients, parents and siblings. Method: Participants were 60 children with leukemia or non-Hodgkin lymphoma, 172 parents and 78 siblings (115 families). Time since diagnosis varied from zero to 33 months. Patients, parents (...) and siblings completed the Family Environment Scale, Perceived Stress Scale, Situation-Specific Emotional Reactions Questionnaire and Pediatric Quality of Life Inventory/Maudsley Marital Questionnaire. Results: Family functioning and the appraisal of the cancer diagnosis proved to be related to patients’, parents’ and siblings’ cancer-related emotions and quality of life post-diagnosis. In addition, family members differed in their perception of some family functioning domains, the appraisal of the cancer diagnosis, positive feelings and quality of life. Discussion: Our findings led to the conclusion that family functioning and the appraisal of the cancer diagnosis are important for the individual adjustment of patients, parents and siblings when facing a diagnosis of cancer in the child. Differences across members within one family speak to the need of screening all family members and intervening at the level of the family unit. (shrink)

Background:In China, the conventional family-based ageing care model is under pressure from social transitions, raising the question of whether and to what extent families are still capable of dealing with the care of the aged.Objective:This article examines the vulnerability and inadequacy of families to bear responsibility for the care of the aged against a backdrop of socioeconomic transformation and diminishing institutional support in rural China.Research design:This article adopts an empirical ethical approach that integrates empirical investigation with ethical inquiry.Participants and (...) research context:The empirical component of this article focuses on the lived experiences of caring for a wife and mother with dementia in one rural Chinese family, collected from a 6-month fieldwork study conducted at one primary hospital.Ethical considerations:Approval was obtained from the university ethics committee.Findings:The empirical study highlights a conflicted family process of managing and negotiating care that indicates the inadequacies and limited ability of families to deal with aged care tasks. In addition, inadequate structures and institutional deficiencies exacerbate the vulnerability of rural families and their inability to offer adequate care.Conclusion:Acknowledging the vulnerability of families as ageing care providers, this article calls for a socially supported family care model for rural older people in China and also proposes policy recommendations. (shrink)

Background Based on the principle of informed consent, doctors are required to fully inform patients and respect their medical decisions. In China, however, family members usually play a special role in the patient’s informed consent, which creates a unique “doctor-family-patient” model of the physician-patient relationship. Our study targets young doctors to investigate the ethical dilemmas they may encounter in such a model, as well as their attitudes to the family roles in informed consent. Methods A questionnaire was (...) developed including general demographic characteristics, the fulfillment of the obligation to fully inform, who will be informed, and the ethical dilemmas in decision-making. We recruited a total of 421 doctors to complete this questionnaire, of which 368 met the age requirements for this study. Cross tabulation and Pearson’s chi-squared test were used to analyze the differences between types of patients for categorical variables, and a p-value < 0.05 was considered statistically significant. Results Our data shows that only 20 doctors (5.40%) stated “informing the patient alone is sufficient” when it comes to informing patients of their serious conditions. The rest of the participants would ensure that the family was informed. When facing elderly patients with decision-making capacity, the data was statistically different (3.8%; P < 0.001) The primary reason for ensuring that family members be informed differs among the participants. In addition, when family members asked doctors to conceal the patient’s medical condition for the best interests of patients, 270 doctors (73.4%) would agree and cooperate with the family. A similar proportion (79.6%) would do so when it comes to elderly patients. Conclusions (1) Chinese doctors pay extra attention to informing the patient’s family, which may not be in the patient’s best interests. (2) Chinese doctors treat adult (but not elderly) patients and elderly patients differently when it comes to informing family members. (3) When family members request that doctors withhold information from patients “in the best interest of the patient,” the majority choose to comply with the request, although this may cause them distress. (shrink)

This study examined the relationships between family environmental contexts, sibling structure, immediate family settings and students’ affective characteristics. Data were collected from 460 South African senior high school students. Using partial least-squares path modelling the findings suggest that environmental contexts and family immediate settings combine to have modest to large concurrent validities in relation to differing measures of students’ affective characteristics, immediate family settings are related more strongly to measures of student affect than are indicators of (...) family environment contexts and there are gender-related differences in how social-status indicators form environmental context constructs and in the nature of the relationships between students’ family environments and their affective characteristics. (shrink)

In this follow-up study of an earlier investigation (Marjoribanks, 2002a), relationships were examined between adolescents' educational aspirations and young adults' educational attainment, after taking into account measures of family background, individual characteristics and proximal learning settings. Data were collected as part of a longitudinal survey of Australian youth (3772 females and 3476 males). The findings from the two analyses suggest that: (a) family background, individual characteristics and proximal learning settings combine to have large associations with adolescents' aspirations, and (...) these aspirations have the largest relationship with young adults' eventual educational attainment; and (b) there are ethnic group differences in the linear and curvilinear nature of relationships involving measures of individual characteristics, adolescents' educational aspirations and young adults' educational attainment. An 'aspiration 2 attainment 2 background' model is proposed to examine the ongoing and different interactions between aspirations and academic outcomes for students from various family backgrounds. (shrink)

Family accommodation refers to the attempt of family members to prevent their child’s distress related to psychopathology. Family accommodation can limit meaningful participation in personal and social routines and activities. Accommodation has been studied extensively in the context of childhood anxiety and has been linked to greater impairment, and poor intervention outcomes. Like anxiety, sensory over-responsivity symptoms are associated with heightened distress and thus, may also be accommodated by family members. The current study describes the validation (...) of a new pediatric family accommodation scale for SOR. Parents of 301 children ages 3–13 years completed an online survey, of which 48 had medical or developmental conditions. The survey included the Child Sensory Profile 2 and the newly developed family accommodation scale for sensory over-responsivity. Three Sensory Profile 2 scores were analyzed: SOR, sensory under-responsivity and sensory seeking. The FASENS consists of 18 items; 12 describing the frequency of accommodation behaviors and 6 describing the impact of the accommodation on the wellbeing of the family and the child. Results indicated that the FASENS has high internal consistency as well as a significant 3-factor confirmatory model fit: accommodations, family impact, and child impact. FASENS scores significantly correlated with SOR symptoms. However, they also correlated with under-responsivity and seeking. Parents of children with health conditions reported significantly higher FASENS scores, which corresponded with their child’s significantly higher sensory scores. Family accommodations for SOR occur to some extent in the general population, but their prevalence and impact are significantly greater when the child has a health condition, in addition to SOR. Additional research is needed to explore whether these accommodations are adaptive and whether families and children would benefit from learning to reduce them, as with anxiety. (shrink)

Background: Both anxiety and depression in family caregivers of advanced cancer patients are common, and they have a negative influence on both the FCs and the patients. Some studies suggested that a variety of interventions could alleviate the psychological symptoms of FCs. However, there is no consensus on much more effective methods for intervention, and relatively high-quality research is blank in psychological problems of these population in China. The validity of mindfulness-based stress reduction and psychological consultation guided by (...) the needs assessment tool in the psychological status of caregivers will be compared in this study to select a more suitable intervention for the FCs of advanced cancer patients in China.Methods and Analysis: A randomized N-of-1 trial would be conducted at the Cancer Hospital, Chinese Academy of Medical Sciences. Fifty eligible FCs of advanced cancer patients will be recruited, and all will receive three cycles of psychological intervention treatment, with each cycle including both of MBSR and psychological consultation guided by the NST. MBSR and psychological consultation guided by the NST will be compared with each other in each cycle, and the intervention sequence will be based on the random number table generated after the informed consent has been completed. Each treatment period is 2 weeks, and the interval between different treatment cycles or treatment periods is 1 week. The self-reported scales are measured at the beginning and end of each treatment period, including the Self-Rating Anxiety Scale, the Self-Rating Depression Scale, Distress Thermometer, Zarit Burden Interview, Chinese version of the Medical Outcomes Study 12-item Short Form, and Family Carer Satisfaction with Palliative Care scale.Dissemination: The protocol of the study was approved by the Institutional Review Board of the Ethical Committee of the Cancer Hospital, Chinese Academic of Medical Science. The results will be published in a peer-reviewed medical journal. The study is registered at Chinese Clinical Trials Registry with the trial registration number chiCTR2000033707. This study employs an innovative methodological approach on the effectiveness of MBSR and psychological consultation guided by the NST for psychological status of FCs of advanced cancer patients. The findings of the study will be helpful to provide high-quality evidence-based medical data for psychological intervention of FCs of advanced cancer patients, and guide clinicians on best quality treatment recommendations. (shrink)

BackgroundKnowledge and attitude towards organ donation are critical factors influencing organ donation rate. We aimed to assess the knowledge and attitude towards organ donation in adolescents in Austria and Switzerland.MethodsA paper-based survey was performed in two secondary schools (age range 11–20 years) in Austria and Switzerland. 354/400 surveys were sufficiently answered and analyzed.ResultsOur study found that knowledge on organ donation is scarce in adolescents. Less than 60% of those surveyed thinks that a person is dead when declared brain dead. 84.6% (...) would authorize organ donation after brain death for themselves, but only 69% would authorize organ donation after brain death for a close relative. 93.7% would accept a donor organ if they needed one. Family discussions, rather than school discussions, influenced knowledge on organ donation, the percentage of respondents who have a firm opinion on organ donation and the rate of declaration of this opinion. Age, gender, nationality and religion also influenced knowledge and attitude towards organ donation. Nearly one third of adolescents are of the opinion that selling non-vital organs should be legalized.ConclusionSince having had family discussions, a potentially modifiable factor, was positively associated with knowledge and attitude towards organ donation, we postulate that educational programs stimulating family discussions on organ donation may be a promising strategy to increase knowledge. (shrink)

The impacts of COVID-19 may be magnified in a shared environment like the household, especially with people spending extended time at home during the pandemic. Family resilience is the ability of a family to adapt to crisis and can be a protective factor against stress and negative affect. While there have been calls to address family resilience during the pandemic, there is a lack of empirical study on its benefit. In this dyadic observational study, we sought to (...) investigate the concordance of family members’ psychological responses to COVID-19, whether dyad members’ risk factors mutually affected each other’s psychological responses, and importantly, whether family resilience was a significant factor in these responses. A total of 200 family dyads from the same household completed the Family Resilience Assessment Scale and questionnaires on COVID-19 threat perception, impacts, and exposure. We found concordant dyad responses for COVID-19 threat perception, but not for psychological impact. Using the Actor-Partner-Interdependence Model framework, we found that one’s psychological impact was affected by the financial impact from both dyad members. After controlling for risk factors and demographic covariates, we found that family resilience significantly associated with lower COVID-19 psychological impact, though not with threat perception. The findings suggest that both family and individual factors need to be addressed and there may be benefit in addressing multilevel risk and protective factors using an ecological systems approach, which may help prepare the population for future crises. (shrink)

A 16-year-old adolescent who identifies as transgender wishes to consider fertility preservation prior to the use of gender-affirming hormones. The adolescent’s parents are divorced, and one parent supports fertility preservation while the other does not. This case explores the minor’s future reproductive autonomy and parental decision making in a field where there is limited evidence of known harms and benefits to the use of fertility preservation in the transgender population and about future potential regret from lack of consideration of fertility (...) preservation during the prime window of opportunity. This case is created from a composite of cases seen at multiple institutions. (shrink)

With reference to the previous empirical works on applause, we explore the roles it plays during the first birthday celebration using multimodal analysis. Particularly, we focus on modes of its initiation and collaborative enactment. The empirical material includes 25 videos from different Polish families. The analysis demonstrates that applause works in interaction as a ritual anchor that allows the participants to move to either the end or the next sequence of the ritual, as an appreciative assessment of the previous action, (...) as a device for focusing joint attention, which coordinates the interaction of participants and focuses the attention on the most important actor/recipient of the ritual. (shrink)

BackgroundA child’s death is the most stressful event and the most complex grief that families face. The process of psychological adaptation to the illness and death of a child is difficult due to a variety of emotional reactions. Parental grief had received the attention of researchers only in recent years when it became clear that this reality differs substantially from the general grief process.ObjectiveThis work aims to highlight the needs of bereaved parents; increase the specificity and effectiveness of the therapeutic (...) approach to prevent complications in the process of loss-making; and find the recurrent thematic nuclei in the development of bereavement present in a therapeutic group of parents who have lost their child to an onco-hematological disease.MethodBetween 2011 and 2016, five therapeutic groups for the grief elaboration were made. The sample included a total of 50 parents of children who died from cancer between the ages of 0 and 21 years.Content analysis was carried out as a qualitative analysis method. The SAS® Text Miner software was used to read, interpret, classify and integrate the data from numerous sources.ResultsThe development and consecutive interpretation of the 5 clusters have been carried out to analyze the related topics using the node “Topic Analysis” and requesting the subdivision into five topics. Four topics have been well defined. Clear topics are reducible to categories of emotional relief, tools, legacy, and unfinished business. The topic analysis provides interesting indications about the different interpretive journeys of the bereavement situation and offers ideas regarding the different types of social responses.ConclusionsAfter reviewing the existing bibliography, we have confirmed the lack of specific literature on the problem of grief in parents whose children have died from cancer. Much research has shown that parents who lose a child to cancer want support, and there are still few studies on the most effective interventions for this group. (shrink)

Publication date: 30 November 2016 Source: Author: Ali Kebriaei, Fatemeh Abedizadeh, Teyebehsadat Sharifian With both professional and personal responsibilities, employees often conflict when reconciling the demands of family and work. The study aimed to investigate whether work to family conflict experienced by employees of Kashan University of medical sciences differed from family to work conflict.A cross sectional study was carried out in 2014. A random sample of 202 employees in the four schools affiliated with Kashan University of (...) medical sciences located in central of Iran was selected and responded to items of the questionnaires using a 7-point Likert scale. Work-family conflict was measured using Carlson et al.’s 18 items scale. Higher values indicate higher levels of work to family conflict and family to work conflict. Analysis was carried out using SPSS 16.Employees experienced work-family conflict in the two directions. Work to family conflict with mean of 31.5510.68 was significantly (t=9.87, P. (shrink)

Comatose survivors of cardiac arrest may die following withdrawal of life-sustaining therapy (WLST) due to poor neurologic prognosis. Family members, acting as surrogate decision makers, are frequently asked to decide whether the patient should continue to receive ongoing life-sustaining therapy such as mechanical ventilation in this context of risk of death following removal. Sometimes, physicians and family members disagree about what is in the patient's best interest, and this conflict causes distress for both families and medical personnel. This (...) article examines themes recorded in the medical records of 24 cardiac arrest patients at Columbia University Medical Center (CUMC) whose families chose to pursue continued life support despite physician recommendations for withdrawal. In documented conversations between patients' families and their providers, the most prominent themes included faith in miracles, the inappropriateness of "playing God," the value of more time with the patient, and differences in how providers and family members perceived the patient's status. (shrink)

Family members do not have an official position in the practice of euthanasia and physician assisted suicide in the Netherlands according to statutory regulations and related guidelines. However, recent empirical findings on the influence of family members on EAS decision-making raise practical and ethical questions. Therefore, the aim of this review is to explore how family members are involved in the Dutch practice of EAS according to empirical research, and to map out themes that could serve as (...) a starting point for further empirical and ethical inquiry. A systematic mixed studies review was performed. The databases Pubmed, Embase, PsycInfo, and Emcare were searched to identify empirical studies describing any aspect of the involvement of family members before, during and after EAS in the Netherlands from 1980 till 2018. Thematic analysis was chosen as method to synthesize the quantitative and qualitative studies. Sixty-six studies were identified. Only 14 studies had family members themselves as study participants. Four themes emerged from the thematic analysis. 1) Family-related reasons to request EAS. 2) Roles and responsibilities of family members during EAS decision-making and performance. 3) Families’ experiences and grief after EAS. 4) Family and ‘the good euthanasia death’ according to Dutch physicians. Family members seem to be active participants in EAS decision-making, which goes hand in hand with ambivalent feelings and experiences. Considerations about family members and the social context appear to be very important for patients and physicians when they request or grant a request for EAS. Although further empirical research is needed to assess the depth and generalizability of the results, this review provides a new perspective on EAS decision-making and challenges the Dutch ethical-legal framework of EAS. Euthanasia decision-making is typically framed in the patient-physician dyad, while a patient-physician-family triad seems more appropriate to describe what happens in clinical practice. This perspective raises questions about the interpretation of autonomy, the origins of suffering underlying requests for EAS, and the responsibilities of physicians during EAS decision-making. (shrink)

Background. As the development and use of genetic tests have increased, so have concerns regarding the uses of genetic information. Genetic discrimination, the differential treatment of individuals based on real or perceived differences in their genomes, is a recently described form of discrimination. The range and significance of experiences associated with this form of discrimination are not yet well known and are investigated in this study. Methods. Individuals at-risk to develop a genetic condition and parents of children with specific genetic (...) conditions were surveyed by questionnaire for reports of genetic discrimination. A total of 27,790 questionnaires were sent out by mail. Of 917 responses received, 206 were followed up with telephone interviews. The responses were analyzed regarding circumstances of the alleged discrimination, the institutions involved, issues relating to the redress of grievances, and strategies to avoid discrimination. (shrink)