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Background: Using extracorporeal membrane oxygenation (ECMO) in paediatric and neonatal intensive care units (PICU/NICU) creates ethical challenges and carries a high risk for moral distress, burn out and team conflicts. Aim: The study aimed to gain a more comprehensive understanding of the underlying factors affecting moral distress when using ECMO for infants and children by examining the attitudes of ECMO nurses. Methods: Four focus groups discussions were conducted with 21 critical care nurses working in a Swiss University Children's Hospital. Purposive sampling was adopted to identify research participants. The data were analysed using reflexive thematic analysis. Results: Unlike "miracle machine" stories in online media reports, specialized nurses working in PICU/NICU expressed both their hopes and fears towards this technology. Their accounts also contained references to events and factors that triggered experiences of moral distress: the unspeakable nature of the death of a child or infant; the seemingly lack of honest and transparent communication with parents; the apparent loss of situational awareness among doctors; the perceived lack of recognition for the role of nurses and the variability in end-of-life decision-making; the length of time it takes doctors to take important treatment decisions; and the resource intensity of an ECMO treatment. Conclusion: The creation of a multidisciplinary moral community with transparent information among all involved health care professionals and the definition of clear treatment goals as well as the implementation of paediatric palliative care for all paediatric ECMO patients should become a priority if we want to alleviate situations of moral distress. Relevance for Clinical Practice: The creation of a multidisciplinary moral community, clear treatment goals and the implementation of palliative care for all paediatric ECMO patients are crucial to alleviate situations of moral distress for nurses, and thus to improve provider well-being and the quality of patient care in PICU/NICU. [ABSTRACT FROM AUTHOR]

Objective  The aim of this study is to assess the impact of specialized pediatric palliative care (PPC) on neonates with life-limiting conditions compared to standard care. Study Design  MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Randomized clinical trials, experimental or observational studies, and secondary administrative database analyses published in English, Spanish, French, and German were included. Two independent reviewers extracted data, and used the Newcastle-Ottawa Scale and the Cochrane Risk of Bias Tool for quality analysis. Discrepancies were resolved as a team. Results  From the 37,788 records obtained, only eight articles met the inclusion criteria. A meta-analysis was not possible due to the heterogeneity in how the outcomes were defined; however, a qualitative synthesis of the results was possible; organizing outcomes into eight different categories: psychological, social and spiritual support; communication; location of care; symptom management; bereavement care; predicted versus actual neonatal outcomes; and parental coping, stress, and satisfaction. Conclusion  Specialized versus may have an impact on neonates with life-limiting conditions and their families. More studies that evaluate the impact of specialized versus in neonates with sound statistical analysis is warranted. [ABSTRACT FROM AUTHOR]

Controversy continues over a proposed moratorium on elective genital surgery in childhood for disorders/differences of sex development (DSD). Empirical evidence on patient preference is needed to inform decision-making. We conducted a multicentre survey by cross-sectional questionnaire in 14 specialized clinics in six European countries. The sample comprised 459 individuals (≥ 16 years) with a DSD diagnosis, including individuals with congenital adrenal hyperplasia (CAH) (n = 192), XY DSD with prenatal androgen effect (A) (n = 150), and without (nA) (n = 117). Main outcome measures were level of agreement with given statements regarding genital surgery, including clitoris reduction, vaginoplasty, and hypospadias repair. A total of 66% of individuals with CAH and 60% of those with XY DSD-A thought that infancy or childhood were the appropriate age for genital surgery. Females with XY DSD were divided on this issue and tended to prefer vaginoplasty at a later age (XY DSD-A 39%, XY DSD-nA 32%). A total of 47% of males preferred early hypospadias surgery. Only 12% (CAH), 11% (XY DSD-A), and 21% (XY DSD-nA) thought they would have been better off without any surgery in childhood or adolescence. Individuals who had early genital surgery were more likely to approve of it. Outcome data failed to support a general moratorium on early elective genital surgery. Participant perspectives varied considerably by diagnostic category, gender, history of surgery, and contact with support groups. Case-by-case decision-making is better suited to grasping the ethical complexity of the issues at stake.Trial registration: German Clinical Trials Register DRKS00006072. [ABSTRACT FROM AUTHOR]

While shared decision making (SDM) has been endorsed and promoted for over two decades, its widespread implementation remains unachieved. SDM entails more than providing patients with information and choice, it also requires collecting, clarifying and considering patients' values, goals and beliefs, which require learned skills. In this article, we underline the importance of early and repeated training to encourage and enable clinicians' use of SDM. We believe the demand for increased training is supported by the right of all patients to have access to clinicians who have mastered the communication and relational skills necessary to facilitate SDM. [ABSTRACT FROM AUTHOR]

Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viability. Shared decision-making regarding these fragile infants between health care professionals and parents has become the preferred model today. However, there is an ongoing ethical debate on how decisions regarding life-sustaining treatment should be reached and who should have the final word when health care professionals and parents do not agree. We designed a survey among neonatologists and neonatal nurses to analyze practices, difficulties and parental involvement in end-of-life decisions for extremely preterm infants.Methods: All 552 physicians and nurses with at least 12 months work experience in level III neonatal intensive care units (NICU) in Switzerland were invited to participate in an online survey with 50 questions. Differences between neonatologists and NICU nurses and between language regions were explored.Results: Ninety six of 121 (79%) physicians and 302 of 431(70%) nurses completed the online questionnaire. The following difficulties with end-of-life decision-making were reported more frequently by nurses than physicians: insufficient time for decision-making, legal constraints and lack of consistent unit policies. Nurses also mentioned a lack of solidarity in our society and shortage of services for disabled more often than physicians. In the context of limiting intensive care in selected circumstances, nurses considered withholding tube feedings and respiratory support less acceptable than physicians. Nurses were more reluctant to give parents full authority to decide on the course of action for their infant. In contrast to professional category (nurse or physician), language region, professional experience and religion had little influence if any on the answers given.Conclusions: Physicians and nurses differ in many aspects of how and by whom end-of-life decisions should be made in extremely preterm infants. The divergencies between nurses and physicians may be due to differences in ethics education, varying focus in patient care and direct exposure to the patients. Acknowledging these differences is important to avoid potential conflicts within the neonatal team but also with parents in the process of end-of-life decision-making in preterm infants born at the limits of viability. [ABSTRACT FROM AUTHOR]

The literature on human turning preferences is inconsistent. While the few studies with children below 14 years of age uniformly describe an overall left-turning (counterclockwise) tendency, a recent Internet study with more than 1500 adults found a right-sided (clockwise) bias. We set out to investigate spontaneous turning behaviour in children age 5–3 years and, based on neuropsychiatric work in adults, also explored a potential association with magical thinking. Findings indicated a clear left-turning preference, independent of a participant's sex and handedness. Whether a child responded a question about the existence of extrasensory communication in the affirmative or not was unrelated to direction and size of turning bias and lateral preference. Our results are consistent with a left-sided turning preference reported for children, but in opposition to the clockwise bias recently described in a large-scale study with adults. Whether they point to a maturational gradient in the preferred direction of spontaneous whole-body rotation or rather to a lack of comparability between measures used in observational versus Internet-based studies remains to be further investigated. Regarding a purported association between body turns and magical thinking, our study is preliminary, as only one single question was used to probe the latter. [ABSTRACT FROM PUBLISHER]