The latest Omicron variant of the novel coronavirus has itself created a novel situation—bringing attention to the topic of healthcare rationing among hospitalized pediatric patients. This may be the first time that many pediatricians, nurses, parents, and public health officials have been compelled to engage in uncomfortable discussions about the allocation of medical care/resources. Simply put, finite budgets, resources, and a dwindling healthcare workforce do not permit all patients to receive unlimited medical care. Triage and bedside rationing decisions are (...) happening in a range of difficult everyday circumstances both implicitly and explicitly, but in ways not recognized by even the best ethically framed intentions. Clinicians and hospital administrators have largely been left on their own “to flatten the rationing curve” in hopes that resources never have to be explicitly rationed at their facility. Unfortunately, the downstream result is a misinformed and distrustful public (i.e. parents, guardians, and caregivers) filled with people who are already burdened with inflammatory pseudoscience narratives and deficits in health literacy. This paper aims to elevate a more thoughtful conversation about healthcare rationing by analyzing some existing ethical principles/framework developed for rationing decision making during previous emergency responses and drawing from the day-to-day clinical perspectives of a frontline pediatric acute care/hospitalist. (shrink)

In this brief text we look at one instance of how gender norms continue to inform institutional treatment of parents regarding care for children: specifically, at how the exercise of fathers’ responsibilities for their children can be discouraged or altogether blocked.

This is a qualitative examination of ethics consultation requests, outcomes, and ethics committee recommendations at a tertiary/quaternary pediatric hospital in the U.S. The purpose of this review of consults over an 18-year period is to identify specific trends in the types of ethical dilemmas presented in our pediatric setting, the impact of consultation and committee development on the number and type of consults provided, and any clinical features and/or challenges that emerged and contributed to the nature of (...) ethical situations and dilemmas. Furthermore, in reviewing clinical ethics consultation trends for nearly two decades, we can identify topic areas for further ethics education and training for ethics consultants, ethics committee members, and pediatric healthcare teams and professionals based on our experiences. Our study with nearly two decades of data prior to the COVID-19 pandemic can serve as groundwork for future comparisons of consultation requests and ethics support for pediatric hospitals prior to, during, and following a pandemic. (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)

Coronavirus disease 2019 can lead to respiratory failure. Some patients require extracorporeal membrane oxygenation support. During the current pandemic, health care resources in some cities have been overwhelmed, and doctors have faced complex decisions about resource allocation. We present a case in which a pediatric hospital caring for both children and adults seeks to establish guidelines for the use of extracorporeal membrane oxygenation if there are not enough resources to treat every patient. Experts in critical care, end-of-life care, (...) bioethics, and health policy discuss if age should guide rationing decisions. (shrink)

Background: Families and clinicians must often weigh competing priorities when making medical decisions for a pediatric patient at the end of life. Few empirical data exist regarding the importance that clinicians place on varying priorities and whether clinical practice conforms to decision-making standards discussed in the literature. Methods: We administered a discrete choice experiment to understand the relative importance of nine pediatric end-of-life decision-making priorities using responses from 364 nurses and physicians from three intensive care units (ICUs) ( (...) class='Hi'>pediatric ICU, pediatric cardiothoracic ICU, neonatal ICU) in a large children's hospital, with a 54% response rate. We used latent class analysis to characterize subgroups of health professionals based on their patterns of importance for the nine attributes and examined differences in class membership using multinomial logistic regression. Results: Eighty-two percent of respondents were nurses, consistent with the proportion of nurse and physician staff in the units. Latent class analysis separated our sample of health professionals into five distinct classes. All five groups rated the child's comfort and the best interests as most important but differed regarding how they valued other considerations: Group 1 rated highly consideration of the entire family and medical judgment; Group 2, the entire family's interests, parents’ preferences, and religious beliefs; Group 3, maintaining harmony between parents and medical team; Group 4, responsible use of medical resources; and Group 5, medical evidence and prolonging the child's life. Those with more years of experience were less likely to fall in Group 5 (medical evidence/life-prolonging). Profession was not associated with group membership. Conclusions: Nurses and physicians who care for dying children prioritize foremost the child's best interests and comfort but then possess varying secondary priorities about what is most important when making medical decisions. Pediatric palliative care and ethics consultative services should be aware of and prepared to address these differing concerns. (shrink)

Objectives To characterize the prevalence and content of pediatric triage policies.Methods We surveyed and solicited policies from U.S. hospitals with pediatric intensive care units. Policies were analyzed using qualitative methods and coded by 2 investigators.Results Thirty-four of 120 institutions (28%) responded. Twenty-five (74%) were freestanding children’s hospitals and 9 (26%) were hospitals within a hospital. Nine (26%) had approved policies, 9 (26%) had draft policies, 5 (14%) were developing policies, and 7 (20%) did not have policies. Nineteen (...) (68%) institutions shared their approved or draft policy. Eight (42%) of those policies included neonates. The polices identified 0 to 5 (median 2) factors to prioritize patients. The most common factors were short- (17, 90%) and long- (14, 74%) term predicted mortality. Pediatric scoring systems included Pediatric Logistic Organ Dysfunction-2 (12, 63%) and Score for Neonatal Acute Physiology and Perinatal Extensions-II (4, 21%). Thirteen (68%) policies described a formal algorithm. The most common tiebreakers were random/lottery (10, 71%) and life cycles (9, 64%). The majority (15, 79%) of policies specified the roles of triage team members and 13 (68%) precluded those participating in patient care from making triage decisions.Conclusions While many institutions still do not have pediatric triage policies, there appears to be a trend among those with policies to utilize a formal algorithm that focuses on short- and long-term predicted mortality and that incorporates age-appropriate scoring systems. Additional work is needed to expand access to pediatric-specific policies, to validate scoring systems, and to address health disparities. (shrink)

Background and aim Difficult moral situations assume more critical importance in pediatric wards since children are more vulnerable than adults. Given that professional ethics is a substantial part of children treatment, the present study was conducted to determine the ethical performance of nurses from the perspective of mothers and nurses in the pediatric wards of Be'esat Hospital in Hamadan. Materials and methods The present descriptive-analytical study was conducted on 58 nurses and 263 mothers of children referred to (...) the pediatric wards of Be'esat Hospital in Hamadan in 2019. The study samples were randomly selected. Data collection tools included the demographic form and Ethical Performance Assessment Questionnaire developed by Beykmirza et al. The obtained data were analyzed in SPSS software version 23using descriptive and inferential statistics. Results As evidenced by the obtained results, the mean ethical performance of nurses from the perspective of nurses and mothers were reported as 86.72 ± 6.397 and 69.92 ± 18.09. From the mothers' viewpoint, 27%, 39.2%, and 33.8% of nurses had weak, moderate and good levels of performance, respectively. On the other hand, from the nurses' perspective, 24.6% and 75.4% of nurses had moderate and good levels of performance, respectively. The obtained results were indicative of a statistically significant difference between the performance score as reported by mothers and nurses. Conclusion Considering that the majority of mothers rated the ethical performance of nurses as weak and moderate, it is suggested that professional ethical principles be implemented in the form of Retraining programs in an attempt to improve the ethical performance of nurses. (shrink)

ObjectiveThis study aimed to better understand the current situation involving work stressors and the coping styles of outpatient and emergency nurses in 29 pediatric specialty hospitals across China. The study analyzed this correlation to provide a reference for the occupational stress management of pediatric nurses.MethodsFrom June to September 2020, 1,457 outpatient and emergency nurses in 29 pediatric specialty hospitals across China were selected as study participants, and a questionnaire survey was conducted using the Basic Information Questionnaire, the (...) Chinese version of the Work Stressor Scale for Nurses, and the Simple Coping Style Scale.ResultsThe assessed stress level of outpatient and emergency nurses in 29 tertiary pediatric specialty hospitals nationwide is lower than the results of the survey of the 2007 domestic norm, p < 0.05. The stressors related to nurses’ expectations, family conflicts, the nature of nursing work, patient factors, and workload were lower compared with the national norm. The positive coping style score on the Simple Coping Style Scale for pediatric outpatient nurses was, and work stressors were positively associated with negative coping styles. Multiple regression analysis showed that the influencing factors of work stressors among pediatric outpatient and emergency nurses correlated with the authorized size, age, working years of nurses, work department, and negative coping styles.ConclusionNegative coping styles were present among pediatric outpatient and emergency nurses and were associated with work stressors. The influencing factors of stressors mainly correlated with the clinical establishment, age, years of employment as a nurse, work department, and negative coping styles. (shrink)

BackgroundPublished data and practice recommendations on end-of-life care generally reflect Western practice frameworks; there are limited data on withdrawal of treatment for children in China.MethodsWithdrawal of treatment for children in the pediatric intensive care unit of a regional children’s hospital in eastern China from 2006 to 2017 was studied retrospectively. Withdrawal of treatment was categorized as medical withdrawal or premature withdrawal. The guardian’s self-reported reasons for abandoning the child’s treatment were recorded from 2011.ResultsThe incidence of withdrawal of treatment (...) for children in the PICU decreased significantly; for premature withdrawal the 3-year average of 15.1% in 2006–2008 decreased to 1.9% in 2015–2017. The overall incidence of withdrawal of care reduced over the time period, and withdrawal of therapy by guardians was the main contributor to the overall reduction. The median age of children for whom treatment was withdrawn increased from 14.5 months in 2006 to 40.5 months in 2017. Among the reasons given by guardians of children whose treatment was withdrawn in 2011–2017, “illness is too severe” ranked first, accounting for 66.3%, followed by “condition has been improved”. Only a few guardians ascribed treatment withdrawal to economic reasons.ConclusionsThe frequency of withdrawal of medical therapy has changed over time in this children’s hospital PICU, and parental decision-making has been a large part of the change. (shrink)

Pediatric dentists rely on access to hospital operating rooms for safe, effective, and humane delivery of dental care. The children who benefit most from dental treatment in a hospital operating room are those who are very young, have dental anxieties or phobias, are precommunicative or noncommunicative, need extensive or invasive dental treatments, or have special healthcare needs. Diminishing access to hospital operating rooms for pediatric dental treatment has become an escalating problem in contemporary times. Financial (...) barriers, hospital costs, reimbursement rates, health insurance policies and deductibles, out-of-network hospitals, socioeconomic factors, and the COVID-19 pandemic are prominent contributing factors. This problem in access to care has resulted in long waiting times for hospital operating rooms, deferral of medically necessary dental care, and pain and infection among this vulnerable patient population. Pediatric dentists have responded to the problem by utilizing alternative methods of care delivery, such as in-office deep sedation or in-office general anesthesia, and by implementing aggressive medical management of dental caries. However, the youngest of pediatric patients and children with special healthcare needs still remain at a disadvantage in receiving definitive dental treatment. This article aims to highlight the ethical challenges faced by pediatric dentists in contemporary practice in the face of limitations in hospital operating room access through four case scenarios. (shrink)

This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers’ moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation. There were 60 (...) patients in the interventional group and 66 patients in the historical control group. We evaluated the impact of weekly meetings to establish goals of care for patients with longer than 10 days length of stay in the ICU for a year. Moral distress was measured intermittently and reported moral distress thermometer scores fluctuated. "Clinical situations" represented the most frequent contributing factor to moral distress. Post intervention, overall moral distress scores, measured on the moral distress scale revised, were lower for respondents in all categories, and on three specific items. Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS, a statistically significant increase in both code status changes DNR, and in-hospital death, with no change in patient 30 or 365 day mortality. The addition of a clinical ethicist and senior intensivist to weekly inter-professional team meetings facilitated difficult conversations regarding realistic goals of care. The study demonstrated that the PEACE intervention had a positive impact on some factors that contribute to moral distress and can shorten PICU length of stay for some patients. (shrink)

There is little information about the content of ethics consultations in pediatrics. We sought to describe the reasons for consultation and ethical principles addressed during EC in pediatrics through retrospective review and directed content analysis of EC records at St. Jude Children's Research Hospital. Patient-based EC were highly complex and often involved evaluation of parental decision making, particularly consideration of the risks and benefits of a proposed medical intervention, and the physician's fiduciary responsibility to the patient. Nonpatient consultations provided (...) guidance in the development of institutional policies that would broadly affect patients and families. This is one of the few existing reviews of the content of pediatric EC and indicates that the distribution of ethical issues and reasons for moral distress are different than with adults. Pediatric EC often facilitates complex decision making among multiple stakeholders, and further prospective research is need.. (shrink)

Bioethical decision‐making in pediatrics diverges from similar decisions in other medical domains because the young child is not an autonomous decision‐maker, while the teen is developing—and should be encouraged to develop—autonomy and decisional capacity. Thus the balance between autonomy and beneficence is fundamentally different in pediatrics than in adult medicine. While ethical dilemmas that reflect these fundamental issues are common, many pediatric physician and nursing training programs do not delve into the issues or offer specific training about how to (...) deal with borderline cases.To meet this need, the Children's Mercy Bioethics Center in Kansas City, Missouri, created a program specifically dedicated to serving practicing, experienced pediatric health professionals. Our students come from various professional disciplines: they are doctors, nurses, social workers, chaplains, lawyers, psychologists, counselors, and hospital administrators practicing in pediatrics. (shrink)

Johnson and colleagues (2015) report a retrospective review of the experience of an ethics consultation service at a single, highly specialized children's hospital over an 11-year period. Despite i...

A two-year rounding program was initiated by the clinical ethics consult service (CECS) to improve ethics program integration and utilization at our 323-bed tertiary care pediatric hospital. Two critical variables were identified for improvement. One: identification of cases in which an ethics consult would have benefited clinical care but was not requested. Two: earlier detection of cases for which the medical team and/or family eventually sought ethics consultation but that worsened during the delay. Improvement relied on eliciting dialogue (...) with the CECS by the medical team and/or patients and families, when it had either not occurred before or had not occurred when it would have been most beneficial. The indirect nature of the improvements sought posed a specific challenge: how does one elicit such action from others? How does a small program with less than one full-time equivalent position that is dedicated to clinical ethics, and little funding, effect such a process change across an organization with more than 600 physicians, 2,000 nurses, 600 medical students, and thousands of other clinicians and staff? The following accounts such an effort and the accompanying two-year study undertaken to document the results. The data presented demonstrate improvement in both identified variables: increased overall utilization of the CECS and earlier detection of cases in which the CECS is typically engaged. (shrink)

Several charters of rights have been issued in Europe to solemnly proclaim the rights of children during their hospital stay. However, notwithstanding such general declarations, the actual implementation of hospitalized children’s rights is unclear. The purpose of this study was to understand to which extent such rights, as established by the two main existing charters of rights, are actually implemented and respected in Italian pediatric hospitals and the pediatric units of Italian general hospitals, as perceived by the (...) nurses working in them. (shrink)

There is a critical need to establish a space to engage in careful deliberation amid exciting, important, necessary, and groundbreaking technological and clinical advances in pediatric medicine. Extracorporeal membrane oxygenation (ECMO) is one such technology that began in pediatric settings nearly 50 years ago. And while not void of medical and ethical examination, both the symbolic progression of medicine that ECMO embodies and its multidimensional challenges to patient care require more than an intellectual exercise. What we illustrate, then, (...) is a person-centered framework that incorporates the philosophy and practice of palliative care and care-based ethical approaches. This person-centered framework is valuable for identifying and understanding challenges central to ECMO, guides collaborative decision-making, and recognizes the value of relationships within and between patients, families, healthcare teams, and others who impact and are impacted by ECMO. Specifically, this person-centered approach enables caregivers to provide compassionate and effective support in critical, and often urgent, situations where conflicts may emerge among healthcare team members, families, and other decision makers. By reflecting on three cases based on actual situations, we apply our person-centered framework and identify those aspects that were utilized in and informed this project. We aim to fill a current gap in the pediatric ECMO literature by presenting a person-centered framework that promotes caregiving relationships among hospitalized critically ill children, families, and the healthcare team and is supported through the philosophy and practice of palliative care and clinical ethics. (shrink)

Autism spectrum disorder affects an estimated 1 in 54 children aged 8 years in the United States. For many of these children, there are concomitant eating and/or behavioral challenges that can make managing their nutritional health challenging. This commentary responds to a particularly challenging case in which a pediatric patient with ASD presented to the local hospital’s emergency department with severe weight loss and malnutrition.

Clinical ethics has been developing in paediatric healthcare for several decades. However, information about how paediatricians use clinical ethics case consultation services is extremely limited. In this project, we analysed a large set of case records from the clinical ethics service of one paediatric hospital in Australia. We applied a paediatric-specific typology to the case referrals, based on the triadic doctor–patient–parent relationship. We reviewed the 184 cases referred to the service in the period 2005–2014, noting features including the type (...) of case, the referring department(s) and the patient9s age at referral. The two most common types of referral involved clinician uncertainty about the appropriate care pathway for the child (26% of total referrals) and situations where the child9s parents disagreed with the doctors’ recommendations for the child9s care (22% of total referrals). Referrals came from 28 different departments. Cancer, cardiology/cardiac surgery and general medicine referred the highest numbers of cases. The most common patient age groups were children under 1, and 14–15 years old. For three controversial areas of paediatric healthcare, clinicians had initiated processes of routine review of cases by the clinical ethics service. These insights into the way in which one very active paediatric clinical ethics service is used further our understanding of the work of paediatric clinical ethics, particularly the kinds of ethically challenging cases that paediatricians view as appropriate to refer for clinical ethics support. (shrink)

This article explores the ethical challenges of providing Medical Assistance in Dying (MAID) in a paediatric setting. More specifically, we focus on the theoretical questions that came to light when we were asked to develop a policy for responding to MAID requests at our tertiary paediatric institution. We illuminate a central point of conceptual confusion about the nature of MAID that emerges at the level of practice, and explore the various entailments for clinicians and patients that would flow from different (...) understandings. Finally, we consider the ethical challenges of building policy on what is still an extremely controversial social practice. While MAID is currently available to capable patients in Canada who are 18 years or older—a small but important subsection of the population our hospital serves—we write our policy with an eye to the near future when capable young people may gain access to MAID. We propose that an opportunity exists for MAID-providing institutions to reduce social stigma surrounding this practice, but not without potentially serious consequences for practitioners and institutions themselves. Thus, this paper is intended as a road map through the still-emerging legal and ethical landscape of paediatric MAID. We offer a view of the roads taken and considered along the way, and our justifications for travelling the paths we chose. By providing a record of our in-progress thinking, we hope to stimulate wider discussion about the issues and questions encountered in this work. (shrink)

Background:Moral distress is a significant concern for nurses as it can lead to burnout and intentions to leave the profession. Pediatric nurses encounter stressful and ethically challenging situations when they care for suspected victims of child maltreatment. Data on pediatric nurses’ moral distress are limited, as most research in this field has been done in adult inpatient and intensive care units.Aim:The purpose of this study was to describe pediatric nurses’ moral distress and evaluate the impact of caring (...) for suspected victims of child maltreatment on nurses’ moral distress, burnout, and intention to leave. Design and method: This descriptive cross-sectional correlational study was conducted in a mid-Atlantic, urban area Magnet pediatric level I trauma center that cares for over 1800 cases of suspected child maltreatment annually. An anonymous electronic survey was sent to all the nurses working at the hospital.Ethical considerations:Institutional Review Board approval was received from the first author’s university and the hospital where the study was conducted.Findings:Overall, nurses ( N = 146) reported low levels of moral distress with a mean score of 59.54 (SD = 49.22) and a range of 0–300 on the Moral Distress Scale Neonatal–Pediatric version. Although the frequency of caring for suspected child maltreatment victims did not affect nurses’ moral distress, caring for victims with fatal maltreatment contributed to nurses’ intention to leave, χ2(1) = 5.35, p = 0.02.Conclusion:The results of this study add to the understanding of moral distress in pediatric nursing. Caring for victims with fatal maltreatment impacts pediatric nurses’ intention to leave. (shrink)

IntroductionCerebral visual impairment results from damage to cerebral visual processing structures. It is the most common cause of pediatric visual impairment in developed countries and rising in prevalence in developing nations. There is currently limited understanding on how neurologic, developmental, and ophthalmic factors predict outcome for pediatric CVI.MethodA retrospective manual chart review of pediatric CVI patients seen at the tertiary pediatric hospital neurology and neuro-ophthalmology service between 2010 and 2019 was conducted. Patients were stratified into (...) severity groups, and followed over time to identify outcome predictors. Collected baseline characteristics included perinatal, genetic, developmental, and neurologic history, along with neuroimaging and fundoscopic findings on examination. Longitudinal data collected included age, seizure control, and type of therapy received. Linear mixed-effect models were used for longitudinal CVI grade outcome analysis.ResultsA total of 249 individuals spanning 779 patient visits were identified. Mean age at diagnosis was 18.8 ± 16.8 months. About 64.3% were born at term age. Perinatal history revealed hypoxic ischemic encephalopathy in 16.5%, intraventricular hemorrhage in 11.6%, and seizures in 21.7%. At presentation, 60.3% had a diagnosis of cerebral palsy and 84.7% had developmental delay. Among all subjects, 78.6% had epilepsy; 33.8% had an epileptic encephalopathy, with spasms/hypsarrhythmia being most common. Abnormal neuroimaging was present in 93.8%. Genetic anomalies were present in 26.9%. Baseline visual examination revealed no blink-to-light in 24.5%; only BTL in 34.5%, fixation/tracking in 26.5%, and optokinetic drum follow in 14.4%. Longitudinal data analysis showed that perinatal history of HIE, a positive epilepsy history, using multiple epilepsy medications, cerebral palsy, and abnormal fundoscopic findings were all negatively associated with CVI grade change over time. After controlling for significant confounders, receiving any type of therapy [early childhood intervention, physical and occupational therapy, refractive error correction or glasses] was significantly associated with longitudinal improvement in CVI grade compared to patients who did not receive any therapy, with glasses yielding the largest benefit.ConclusionThis study offers extensive insights into neurologic, developmental and ophthalmologic features in patients with moderate to severe CVI. In concordance with previous findings, aspects of perinatal history and epilepsy/seizure control may help inform severity and prognosis in the general neurology or ophthalmology clinic. Conversely, these aspects, as well as genetic and specific epilepsy traits may alert vision health care providers in the clinic to pursue visual evaluation in at-risk individuals. Longitudinal follow-up of CVI patients showed that interventional therapies demonstrated vision function improvement greater than no therapy and maturational development. (shrink)

Background: Ethics consultants (ECs) are increasingly expected to possess core knowledge and skills. Few data address whether ECs actually possess recommended core knowledge. We aimed to measure pediatric ECs’ understanding of ethical principles, identify knowledge gaps, and explore associations between experience/training and knowledge in pediatric ethics consultations. Methods: We identified the 2 ECs most knowledgeable in pediatric ethics from each of 45 freestanding children's hospitals and an equal number of general teaching hospitals in the United States. This (...) yielded a sample of 159 eligible pediatric ECs. Pediatric ECs were sent a survey measuring ethics training, characteristics of the ethics consultation service, and EC knowledge, as assessed by a previously validated scale entitled the Test of Residents’ Ethics Knowledge for Pediatrics (TREK-P). Of 102 completed surveys received, 99 were used in the analysis. Results: Seventy-three percent of ECs had completed ≥1 formal training modality, most commonly bioethics mini-courses, master's degrees, or certificate programs (20–30% each). Respondents infrequently received salary support (32%) or had a budget (28%) to support ethics work. The median TREK-P score was 19 (interquartile range [IQR] 17–21). Forty percent of subjects scored ≥20, surpassing the threshold of adequate performance proposed in previous work. Median scores were significantly higher among ECs with formal training in ethics but did not differ significantly by other variables. In secondary analyses, high scores (≥20) were significantly more common among ECs receiving salary support (55% vs. 33%, p = 0.04) and who had formal ethics training (47% vs. 22%, p = 0.02). Items pertaining to privacy, genetic testing, and assent, were answered incorrectly by >33% of ECs. Conclusions: High scores on a validated ethics knowledge scale were more common among ECs with salary support or formal ethics training. The study highlights knowledge gaps that warrant consideration as EC becomes a professionalized endeavor. (shrink)

Background: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. Objective: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. Design and methods: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, (...) both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child’s serious illness. Ethical considerations: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author’s IRB approved study at the Children’s Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors’ clinical experiences. Findings: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child’s illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. Discussion: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. Conclusion: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue. (shrink)

The primary objective was to review pediatric ethics consultations at a large academic health center over a nine year period, assessing demographics, ethical issues, and consultant intervention. The secondary objective was to describe the evolution of PECs at our institution. This was a retrospective review of Consultation Summary Sheets compiled for PECs at our Academic Health Center between January 2008 and April 2017. There were 165 PECs reviewed during the study period. Most consult requests came from the inpatient setting, (...) with the Pediatric and Neonatal Intensive Care Units being the highest utilizers. Consultation utilization increased over the study period. The most common patient age was less than one year. Physicians were most likely to request consultation. Patient Best Interest, Withholding/Withdrawing of Life Sustaining Therapy, and Provider Moral Distress were ethical issues most commonly identified by the consultants. Making recommendations was the most common consultant intervention. The ethics consultation process evolved over time from informal provider discussions, to a hospital infant care review committee, to a pediatric only consultation service, to a combined adult/pediatric consultation service, with variable levels of salary support for consultants. Ethics consultation requests are growing at our institution. Similarities in identified ethical issues exist between our findings and existing literature, however meaningful comparisons remains elusive secondary to variability in approaches to investigation and reporting. A combined paid/volunteer/trainee ethics consultation service model appears sustainable and real time ethics consultation is feasible using this approach. (shrink)

BackgroundWeChat is the main social platform in China, characterized by its versatility and ease of communication. This study aimed to explore the effect of a WeChat-platform-based education and care program on relieving anxiety, depression, and post-traumatic stress disorder in parents of pediatric and adolescent patients with osteosarcoma.MethodsIn total, 48 patients and 86 parents were enrolled in this randomized, controlled study and then assigned to the WBEC program and the usual education and care program for 6 months as a 1:1 (...) ratio.ResultsParents in the WBEC group had lower Hospital Anxiety and Depression Scale for anxiety scores at M3 and M6 when compared to the UEC group, while anxiety rate was only decreased at M3 in the WBEC group. Meanwhile, parental HADS for depression scores were reduced at M3 and M6 in the WBEC group when compared with the UEC group; while depression rate remained the same. Parental Impact of Event Scale-Revised scores were slightly reduced among the WBEC group at M6 when compared with the UEC group [12.0 : 10.0–20.8] vs. 15.0 ], but not statistically significant.ConclusionWeChat-platform-based education and care is considered a feasible intervention to reduce anxiety and depression in parents of pediatric and adolescent patients with osteosarcoma, while also providing mild relief from PTSD. (shrink)

Background Despite national increase in pediatric ethics consultation volume over the past decade, protected time and resources for healthcare ethics consultancy work has lagged.Methods Correlation study investigating potential associations between ethics consult volume reported by recent national survey of consultants at children’s hospitals and five programmatic domains.Results 104 children’s hospitals in 45 states plus Washington DC were included. There was not a statistically significant association between pediatric ethics consult volume and hospital size, rurality of patient population, or (...) number of consultants. Academically-affiliated children’s hospitals had fewer ethics consults compared to nonacademically affiliated. Association was found between full-time equivalent (FTE) hours and number of ethics consults (p < 0.0001). Spearman rank correlation between ethics consult volume and FTE was 0.5.Conclusions While the results of this study should be interpreted with caution, investment in protected time for ethics consultancy work may translate into increased volume of pediatric ethics consults. (shrink)

Background and aimThe nature of pediatric settings may encounter nurses with more complicated ethical issues. A code of ethics guides nurses to act and decide ethically as a profession. Also, there is always a need to evaluate amount nurses adhere to this code of ethics, using valid and reliable instruments. This study aimed to develop a questionnaire and assess its psychometric properties to measure pediatric nurses' adherence to the code of ethics. MethodsIn this methodological research study, firstly, the (...) questionnaire was developed based on an extensive review of the related literature and the theoretical framework of nursing ethics. A panel of experts (n = 12) reviewed the preliminary questionnaire qualitatively and quantitatively (using CVI and CVR). A conveniently selected sample of 156 nurses working in pediatric wards in three hospitals filled out the questionnaire. The psychometric process included determining sample size and data adequacy using KMO and Bartlette's test of sphericity; exploratory factor analysis (principal component method with Promax rotation); item analysis; and Cronbach's alpha coefficient. Also, the Interclass Correlation Index (ICC) value was determined using a two-week interval test–retest method on 30 eligible nurses.ResultsThe CVI and CVR for the entire questionnaire were 0.85 and 0.78, respectively. The CVI and CVR of all items were reported higher than 0.59 and 0.8, respectively. Cronbach's alpha of the 28-items instrument was 0.92. Extracted six factors explained 65.31% of the total variance, and the values of the item correlations with the total questionnaire showed good internal consistency (0.52 to 0.90). The items of each factor were evaluated to determine the values they represent. Accordingly, the factors were named beneficence, nonmaleficence, human dignity, autonomy, informed consent, and honesty. The ICC value was 0.99.ConclusionsThe developed instrument is acceptable and has good reliability and validity. It can be used to assess the amount of pediatric nurses' adherence to the code of ethics by managers, teachers, and researchers. (shrink)

Infants, children and adolescents with life-limiting and life-threatening disease need long-term care that may change according to disease’s natural history. With the primary goal of quality of life, the psychologist of pediatric palliative care network deals with a large variety of issues. Little consideration has been given to the variety of intervention areas of psychology in PPC that concern the whole life span of the patient and family. The PPC network is composed by a multidisciplinary team of palliative care (...) specialists that intervenes at home, in the hospital and in every place where the patient is living. The network coordinates different public health services to respond to clinical, psychosocial and spiritual needs. In these scenarios, the psychological need is not a single event but a moment inserted in the complexity of the child’s needs. This retrospective monocentric project consists of an analysis of characteristics of psychological interventions in our PPC service. The time frame taken into consideration is 2019–2020, analyzing the clinical records of 186 patients of Pediatric Palliative Care and Pain Service of Veneto Region. The areas that emerged in the analysis show how the intervention of the psychologist in PPC does not concern only end-of-life, but a series of topics that are significant for the family to guarantee psycho-social wellbeing oriented toward the best quality of life. In conclusion, these different topics highlight the complexity of the child and family experience. This variety must be taken into consideration, the psychologist must increase holistic support with a dedicated skills curriculum. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Road to Understanding and Acceptance of the Late Effects of Pediatric Brain Tumors and TreatmentJeanne CarlsonWe had little warning or time to adjust to our daughter’s diagnosis. A call from her third grade teacher reporting that Sarah seemed to be having vision problems rapidly led to eye exams, an MRI, and the discovery of a Germinoma brain tumor in the suprastellar region of Sarah’s brain. We were (...) terrified but began treatment feeling optimistic about the outlook for Sarah’s recovery. Luckily, Sarah’s treatment was relatively non–invasive and quick, chemotherapy and radiation, five months start to finish. We were thrilled to have Sarah’s treatment behind us.As any parent of a child with a life–threatening illness knows, family life is seriously disrupted by the countless doctor, lab, and hospital visits, the worry, and the financial strain that are suddenly added to the demands of everyday life. We did our best to balance our focus on both of our children as Sarah is a twin and we didn’t want her brother Will to suffer as a result of his sister’s illness. It wasn’t easy but we found a way to schedule Will’s usual play dates, baseball practice, and family time. We were all happy and relieved when Sarah’s treatment was completed, yet we would later learn that we had been incredibly naïve in two ways; we thought that our brain tumor journey was over after Sarah’s treatment was completed and we thought that we’d brought Will through the process without effect. We had a lot to learn.At the time of diagnosis we knew that Sarah’s memory and ability to express emotion had already been impacted by the tumor but we didn’t yet know what that would mean to her quality of life. We were virtually unaware however that at age nine the chemotherapy and radiation treatments that Sarah received would result in profound late effects. Following treatment Sarah successfully completed 3rd grade and even received excellent STAR test scores (California state standardized tests). In 4th grade however, Sarah’s performance began to diverge from that of her peers and she found herself struggling in school and unable to make friends. We began looking for ways to help our daughter.What followed was a five year long journey through testing, evaluations, individualized education plans (IEPs), and therapies, which, in the end, left our family needing to accept the fact that although Sarah remains intelligent and artistically talented, she suffers from a constellation of late effects that will always affect her ability to function in the world. As a result of Sarah’s tumor and treatment she struggles with Auditory Processing Disorder, word finding problems, poor executive function, inability to recognize how she feels, significant difficulty making decisions, inability to read social cues, poor memory, slow processing, an emotional age of about nine, and lots of anxiety. She is also panhypopituitary, meaning that she has no remaining pituitary function and must take replacement medications by pill and injection, has hypothalamic obesity (HO), which is primarily controlled by more medication, and Raynaud’s Disease. The HO is an ongoing challenge because if Sarah does gain weight she can’t lose it again and exercise is not an easy solution because, like many pediatric brain tumor survivors, Sarah is easily fatigued. Finally, although Sarah’s vision improved after treatment her vision loss is significant enough to prevent her from driving. We pieced together this understanding of Sarah’s challenges and disabilities slowly so it wasn’t until the end of our children’s middle school years that we finally accepted the magnitude of the damage caused by the tumor and treatment. Thereafter we changed our focus from what Sarah might achieve in life to how to support [End Page 21] her in the activities at which she still excels and how to keep her active, interested in life, and feeling good about herself.It would have been a huge gift if we had been provided with information about the possible late effects that can result from treating the brain of a 9–year–old... (shrink)

The number of children with chronic critical illness (CCI) is a growing population in the United States. A defining characteristic of this population is a prolonged hospital stay. Our study assessed the proportion of pediatric patients with chronic critical illness in U.S. hospitals at a specific point in time, and identified a subset of children whose hospital stay lasted for months to years. The potential harms of a prolonged hospitalization for children with CCI, which include over treatment, (...) infection, disruption of family life, and the intensive utilization of resources—combined with the moral distress experienced by the clinicians who care for the children, suggest the need for ethical analysis of this growing issue to identify actions that could be taken at the clinical and health systems levels to reduce the harms associated with prolonged hospital stay.In this article we present three real cases from our study that involved a very long hospital stay. We applied a framework developed by Mackenzie, Rogers, and Dodds to analyze inherent, situational, and pathogenic vulnerabilities to examine the ways that interventions intended to remedy one source of harm for the children in our cohort inadvertently created other harms. We examined the complex ways that children with protracted hospitalization are vulnerable to the choices made by their family and clinicians, as well as by healthcare systems and communities. Finally, we used this analysis to summarize actions and ethical responses to this growing patient population. Such an understanding is essential to making clinical and ethical decisions that arise for children who are at risk for a very long stay in the hospital. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Stories of Families with Chronically Ill Pediatric Patients during the War in UkraineVita VoloshchukFebruary 24th was a day that has left a mark in the memory and on the lives of every Ukrainian person. My husband and I work together [End Page E5] in a hospital. He had gone into work early to conduct a kidney transplant that had been scheduled for that day. Suddenly, whilst on (...) my way to work that morning, I heard a strange sound—it was an air-raid siren. Before that, I had never heard such a sound. I went through all the possible options of what it could be. Of course, watching the morning news had never been a habit either. The next thing that astonished me was that the taxi I had ordered was taking an unnaturally long time to turn up. When I got into the taxi, I noticed that the taxi driver was really upset and silent for half of the journey. He then said, “A war has begun...”“War? So? The war has been going on since 2014.”“You don’t understand,” he said. “Russia is launching missile attacks all over the territory of Ukraine; Russian troops are coming from the east and north of Ukraine. They want to capture the capital of Ukraine.” (Kyiv).Arriving at the hospital, I saw confused faces everywhere. The morning meeting began with a discussion of how we were to act in any possible situation that may occur. We were to discharge patients from the hospital, as many as possible. The arrangement of a bomb shelter began (although I didn’t even think that such a thing existed in our hospital), along with the strengthening of the hospital’s windows, and the increase of supplies such as medicine and food. Of course, the boy who expected a kidney transplant did not receive it because no one knew what to expect at any second or where a hostile Russian missile might hit, as Russian missiles hit not only military objects but residential buildings, hospitals, and memorials as well.Children who had to continue therapy remained in the hospital. As soon as we heard the sound of an air-raid siren, we had to go down into the bomb shelter. This happened 5-10 times per day. Families with palliative and chronically ill children began to call and ask for advice on how to proceed in such a situation. As many children were on artificial respiration devices, others needed oxygen therapy, and sputum of mucus from the upper respiratory tract. All this required uninterrupted power supplies and appropriate equipment. Later that day, a doctor from Poland called me and asked if our pediatric patients needed help, saying it would be better if they were moved to Poland, where they would be safer and have the correct equipment. We started organizing evacuations for chronically ill and palliative patients.Seven days after the war began, parents from other regions, where the situation was more dangerous, began calling, asking for help evacuating. The hospital began to work intensively round the clock. Some patients moved in, and others were evacuated abroad. Some did not want to go. They continued treatment in the hospital, which turned into a hub for patients who had come from more dangerous, occupied territories; patients who were forced to leave their motherland to continue treatment.Since the beginning of the war, I have been responsible for transferring palliative patients and other patients with gastrointestinal diseases abroad. After the massive invasion, everything changed in our country. It is important to say that during the war, Lviv is safer than any other Ukrainian city, still air-raid sirens often go off, and everyone needs to run immediately to shelters for their safety. Palliative patients need special care. It is very difficult to run with patients several times per day during an air-raid siren or live with these children for a long time (2-3 weeks) in shelters because of the explosions occurring around them.It is impossible to move some patients to safety because they need appropriate medical equipment or mechanical ventilation is necessary. In shelters, there are crowds, and the high risk of... (shrink)

INTRODUCTION[|]The practice of medicine has evolved from old approach, in which all decisions for the patient are taken by physician, to a new approach, which includes patients to the medical decision-making process and endorses informed consent of the patients. In addition to healthcare professionals and patients, parents or legal representatives are stakeholders in the informed consent process of children. The knowledge and attitudes of physicians and medical school students about the informed consent period in children are important for the effectiveness (...) of the medical intervention and the biopsychosocial development of children. In this study, it was aimed to understand involvement of medical students and physicians in the informed consent process of children and their level of knowledge on children's rights and their attitudes in daily clinical practice.[¤]METHODS[|]The study is a descriptive study and n = 150 participants, who were randomly selected from senior medical school students working in medical school campus or university hospital and physicians serving pediatric patients, were included to this study. Questionnaires were applied for the measurement of participants' socio-demographic characteristics, education on pediatric patient rights, and legal provisions. The data were evaluated using SPSS 20.00 software.[¤]RESULTS[|]Of participants, 62% (n = 93) were phase 6 medical students, while 29.33% (n = 44) were resident physicians and the rest were faculty members (8.67%; n = 13). The proportion of physicians, who didn't received training on child rights, was 80.7% (n = 46) and statistically significantly higher than medical students (49.45%; n = 45) (p <0.001). However, participants who were not educated about the children's rights stated with higher ratio (44.83%; n=65), that informed consent should be obtained before medical intervention from individuals under 18 years of age, when they are compared to the the participants who received education (20.69%; n=30) (p = 0,019). The majority of participants (59.5%; n = 88) find the intervention in individuals under the age of 18 years in emergencies without consent of legal representatives ethically and legally appropriate (p <0.001). The participants believe that it is ethically and legally appropriate to conduct an intervention on an individual under the age of 18 years without the legal representative (36. 7%; n=54) (p <0.001).[¤]DISCUSSION AND CONCLUSION[|]This study compared the levels of knowledge and attitudes of participants, who were previously trained in or didn't received any training about children's rights and informed consent of children. However, the quality of the training of the participants on children's rights, was not questioned. This study showed that education on children's rights does not significantly increase the level of legal knowledge on children's rights. Having well-designed a subject focused on this theme in medical deontology and ethics education can increase the knowledge levels and improve the attitudes of medical students. This study sheds light on the issues that need to be focused in the medical faculties and the trainings of physicians and showed lack of information and need for development of attitudes regarding children's rights and informed consent in children.[¤]. (shrink)

ObjectiveThe objective of this study was to validate the computerized Symbol Digit Modalities Test in a Swiss pediatric cohort, in comparing the Swiss sample to the Canadian norms. Secondly, we evaluated sex effects, age-effects, and test–retest reliability of the c-SDMT in comparison to values obtained for the paper and pencil version of the Symbol Digit Modalities Test.MethodsThis longitudinal observational study was conducted in a single-center setting at the University Children’s Hospital of Bern. Our cohort consisted of 86 children (...) aged from 8 to 16 years. The cohort included both healthy participants and patients hospitalized for a non-neurological disease. Forty eight participants were assessed during two testing sessions with the SDMT and the c-SDMT.ResultsTest–retest reliability was high in both tests. A reliable change index was calculated for the SDMT and the c-SDMT corrected for practice effects. While a significant age effect on information processing speed was observed, no such effect was found for sex. When data on the c-SDMT performance of the Swiss cohort was compared with that from a Canadian cohort, no significant difference was found for the mean time per trial in any age group. Norm values for age groups between 8 and 16 years in the Swiss cohort were established.ConclusionNorms for the c-SDMT between the Swiss and the Canadian cohort were comparable. The c-SDMT is a valid alternative to the SDMT. It is a feasible and easy to administer bedside tool due to high reliability and the lack of motor demands. (shrink)

Background Providing care to children with cancer is one of the most challenging areas of ethical care for nurses. Few studies have addressed nurses’ perception of the barriers to giving ethical care in oncology departments. Thus, it is essential that the ethical challenges in caregiving as perceived by oncology nurses be investigated. Objective The present study was conducted to investigate the ethical challenges as perceived by nurses in pediatric oncology units in the south of Iran. Research design The present (...) study is a qualitative work of research with a conventional content analysis design. Data were collected via individual semi-structured interviews. The collected data were analyzed using the qualitative content analysis method. Participants and research context The participants were 21 nurses from pediatric oncology units in state hospitals who were selected by purposeful sampling. Sampling continued until the data were saturated. The study lasted from April to October 2022. Findings Three main themes, promoting psychological safety in the children, respect for the dignity of the children, and expansion of support for families, and nine subthemes were extracted from the data. Ethical considerations The study’s protocol was approved by the Research Ethics Committee of the University of Medical Sciences and ethical principles were followed throughout the study. Discussion and conclusion From the nurses’ perspective, the major ethical challenges in providing ethical care in pediatric oncology units were reducing tension toward promoting the patients’ psychological safety, showing respect for the identity and dignity of the children with cancer, and expanding support of the patients’ families. By creating the right cultural and professional context and establishing proper protocols, healthcare policymakers and administrators can take effective steps toward eliminating the barriers to providing ethical care. (shrink)

Brain tumors are a common form of solid tumors in children and, unfortunately, they are characterized by a very uncertain prognosis. The treatment of this pathology often includes one or more very invasive surgical procedures, quite often in the very first steps of the treatment. Cases of brain tumors in children represent one of the greatest challenges for health care professionals in the domain of pediatric neurosurgery. This is clearly due to the complexity of the therapeutic plan, but also (...) to the nature of the bond that is established between the child, the parents, and the members of the staff during the often-dramatic initial phase of the illness. In this phenomenological-hermeneutic study, we explore both the emotional and organizational needs, as well as the available professional and personal resources of the staff in the Neurosurgery ward of the Meyer Children’s Hospital in Florence. The ward staff, composed of 7 surgeons, a pediatric neuro-oncologist, 12 nurses, and 4 auxiliary health care professionals, underwent in-depth interviews that were recorded. The recordings were then transcribed and submitted to content analysis according to COREQ standards. A complex picture of emotional as well as organizational demands emerged from the data. Shared experiences were pointed out, together with more specific and idiosyncratic contents characteristic of different professional roles. The focus of the present paper was twofold, first, we considered the needs that are overtly expressed by the staff, and then we discussed the main sources of their motivational drives. We found that the latter is mainly found in the quality of the therapeutic bond that is established with the children and the family members, together with the deep interest in one’s own professional activity and the effective complementarity and integration of the personal and professional qualities of the staff members within the multidisciplinary caring group. (shrink)

BackgroundCommentators believe that the ethical decision-making climate is instrumental in enhancing interprofessional collaboration in intensive care units. Our aim was twofold: to determine the perception of the ethical climate, levels of moral distress, and intention to leave one's job among nurses and physicians, and between the different ICU types and determine the association between the ethical climate, moral distress, and intention to leave.MethodsWe performed a cross-sectional questionnaire study between May 2021 and August 2021 involving 206 nurses and physicians in a (...) large urban academic hospital. We used the validated Ethical Decision-Making Climate Questionnaire and the Measure of Moral Distress for Healthcare Professionals tools and asked respondents their intention to leave their jobs. We also made comparisons between the different ICU types. We used Pearson's correlation coefficient to identify statistically significant associations between the Ethical Climate, Moral Distress, and Intention to Leave.ResultsNurses perceived the ethical climate for decision-making as less favorable than physicians. They also had significantly greater levels of moral distress and higher intention to leave their job rates than physicians. Regarding the ICU types, the Neonatal/pediatric unit had a significantly higher overall ethical climate score than the Medical and Surgical units and also demonstrated lower moral distress scores and lower “intention to leave” scores compared with both the Medical and Surgical units. The ethical climate and moral distress scores were negatively correlated ; moral distress and "intention to leave" was positively correlated ; and ethical climate and “intention to leave” were negatively correlated.ConclusionsSignificant differences exist in the perception of the ethical climate, levels of moral distress, and intention to leave between nurses and physicians and between the different ICU types. Inspecting the individual factors of the ethical climate and moral distress tools can help hospital leadership target organizational factors that improve interprofessional collaboration, lessening moral distress, decreasing turnover, and improved patient care. (shrink)

IntroductionThis study reports the findings on how Child life specialists implemented an innovative approach to providing therapeutic support to pediatric patients.MethodsPart of a larger study that uncovered themes about CLSs’ experiences while working with MEDi®, this study reports the reflections that CLSs have about the process of implementation. Seven CLSs participated in semi-structured interviews. Content analysis was conducted on interview data and three themes were generated.ResultsThe first was in regards to the adoption process whereby CLS challenges, successes, and surprises (...) were revealed. Second, CLSs explained how using MEDi® aligned with the roles and responsibilities of their profession. The third area of understanding was in CLS explanation of the friendly emotional impact MEDi® seems to have on the hospital environment.ConclusionChild life specialists are encouraged to use the MEDi® robot to support children at the bedside. (shrink)

BackgroundInformation processing speed is a marker for cognitive function. It is associated with neural maturation and increases during development. Traditionally, IPS is measured using paper and pencil tasks requiring fine motor skills. Such skills are often impaired in patients with neurological conditions. Therefore, an alternative that does not need motor dexterity is desirable. One option is the computerized symbol digit modalities test, which requires the patient to verbally associate numbers with symbols.MethodsEighty-six participants were examined, 38 healthy and 48 hospitalized for (...) a non-neurological disease. All participants performed the written SDMT, c-SDMT, and the Test of Non-verbal Intelligence Fourth Edition. Statistical analyses included a multivariate analysis of covariance for the effects of intelligence and hospitalization on the performance of the SDMT and c-SDMT. A repeated measures analysis of variance was used to compare performance across c-SDMT trials between inpatients and outpatients.ResultsThe MANCOVA showed that hospitalization had a significant effect on IPS when measured with the SDMT but not with the c-SDMT, while IQ had no effect on IPS. Age was the best predictor of performance of both tests. The repeated measures ANOVA revealed no significant difference in within-test performance between outpatient and inpatient participants in the c-SDMT.ConclusionPerformance of the c-SDMT is not confounded by hospitalization and gives within-test information. As a valid and reliable measure of IPS for children and adolescents, it is suitable for use in both inpatient and outpatient populations. (shrink)

This article examines CURE Children’s Hospital of Uganda (CURE), a faith-based pediatric neurosurgery hospital in Sub-Saharan Africa, as a unique nexus of Western biomedical and holistic-spiritual healthcare in their philosophy, staff motivation, and delivery. Offering the concept of a healing narrative, the essential core of their practice is captured, I suggest, in the articulation and practice of a healing narrative of human flourishing, and we might productively think of the ethics of their clinical approach as premised on (...) being with the patient, understood as mutual vulnerability and attending to suffering, and being for the patient, understood as advocating joy within and beyond the clinic. Extrapolating from this case study, the ideas being with and being for might be added to our clinical ethical practices and lexicon as we think through alternatives to a fragmented, compartmentalized biomedical care. (shrink)

Background:Scholarly work is needed to develop the conceptual and theoretical understanding of trust to nursing practice. The transition from hospital care to complex pediatric homecare involves nurses in myriad roles, including management and care provision. Complex pediatric homecare transforms children, families, professionals, and communities, but its exact implications are unclear.Research objectives:To conduct an ethical inquiry into the role and responsibilities of nurses in the qualitative experience of adults involved in the hospital-to-home transition of young, ventilator-dependent children.Research (...) design:We followed methods described by Franco Carnevale. We used a sociologically grounded theoretical orientation—trust—to re-interpret qualitative data for an ethical inquiry into a specific facet of that data.Participants and study context:The participants included 26 adults, including 14 nurses, involved in the hospital-to-home transition in a Canadian province. Participants represented family, hospital, home, and government.Ethical considerations:The Conjoint Health Research Ethics Board at the University of Calgary approved this study.Findings:First, the concept and practice of trust was salient to the experience of transition. For example, responsibilities’ allocation between hospital-based professionals to mothers, home-based nurses, and non-professionals necessitated reliance and vulnerability. Second, the consequences of distrust connected to recognized challenges. For example, tensions along rural–urban, medical-family, and professional–personal divide each revealed suspicion and uncertainty that led to isolation and anxiety for all involved. Third, recommendations to improve the experience and mitigate the challenges of transition can be grounded in trust promotion. For example, transition-specific education programs and codes of ethics would promote openness, recognize mutual vulnerability, and advance trust in transition.Conclusions:The challenges to transition evidenced distrust, while trust represents a powerful tool to counter these challenges and their implications. A climate of trust could bridge divides between mothers and professionals; rural and urban professionals; and professionals with differing relationships with the family. (shrink)