Background:Despite growing evidence that participation in psychological trauma research is well tolerated by children and parents, ethics boards may voice concerns regarding research with families...

Concussions are a significant public health problem worldwide. This brain injury is problematic in the paediatric population for a variety of reasons; however, the enquiry into these problems has been mainly through the biomedical perspective. This approach has impacted nursing knowledge and practice of children and youth with a concussion, primarily since other perspectives are viewed as not being objective. In this manuscript, I draw on Thomas Kuhn's view of objectivity to evaluate the biomedical perspective of concussion. I utilize (...) current research and clinical examples to illustrate the advantages and drawbacks of this perspective for nursing. From this discussion, I propose an alternative perspective to capture the complexity of paediatric concussions for nursing, a systems perspective. Although I argue for an alternative perspective to approach paediatric concussions for nursing, I maintain that the biomedical perspective can be incorporated as one part of nursing knowledge and practice for paediatric concussion. (shrink)

In the United States, approximately 2.53 million people sustain a concussion each year. Relative to adults, youth show greater cognitive deficits following concussion and a longer recovery. An accurate and reliable imaging method is needed to determine injury severity and symptom resolution. The primary objective of this study was to characterize concussions with diffusion tensor imaging. This was performed through a normative Z-scoring analysis of DTI metrics, fractional anisotropy, axial diffusivity, and radial diffusivity, to quantify patient-specific injuries and identify (...) commonly damaged brain regions in paediatric concussion patients relative to healthy controls. It was hypothesized that personalizing the detection analysis through normative Z-scoring would provide an understanding of trauma-induced microstructural damage. Concussion patients were volunteers recruited from the Emergency Department of the McMaster Children’s Hospital with a recent concussion, 9 males and 17 females, mean age 14.22 ± 2.64, while healthy paediatric brain DTI datasets were obtained from an MRI data repository. Significant abnormalities were commonly found in the longitudinal fasciculus, fronto-occipital fasciculus, and corticospinal tract, while unique abnormalities were localized in a number of other areas reflecting the individuality of each child’s injury. Total injury burden, determined by the number of regions containing outliers per DTI metric per patient, was used as the metric to quantify the overall injury severity of each patient. The primary outcome of this analysis found that younger patients experienced a significantly greater injury burden when measured using fractional anisotropy. These results show that DTI was able to detect microstructural changes caused by concussion, on a per-person basis, and has the potential to be a useful tool for improving diagnostic accuracy and prognosis of a concussion. (shrink)

IntroductionIn highly developed countries, as many as 16 percent of children are physically abused each year. Traumatic brain injury (TBI) is the most common injury in non-accidental trauma (NAT) and is responsible for 80 percent of fatal NAT cases, with most deaths occurring in children younger than three years old. Cases of abusers who refuse withdrawal of life-sustaining medical treatment (LSMT) to avoid criminal charges have previously been reported. Therefore, we hypothesized that NAT is associated with a lower (...) risk for withdrawal LSMT in pediatric TBI.MethodsThe pediatric Trauma Quality Improvement Program database was analyzed (2014 to 2016) for patients aged 16 and younger with TBI and Glasgow Coma Scale (GCS) of 8 and lower on admission. Patients with a head Abbreviated Injury Scale (AIS) of 2 or less or who died within 48 hours were excluded. A multivariable logistic regression model was used for analysis.ResultsOf 2,209 TBI patients, 92 (4.2 percent) had withdrawal of LSMT. Compared to those without withdrawal of LMST, those with LMST had statistically similar median age (three years of age versus seven years, p = 0.07) and a higher rate of NAT (33.7 percent versus 13.5 percent, p < 0.001). The most common specified perpetrator was a father/stepfather/ male partner (70 percent). After adjusting for covariates, factors associated with higher risk for withdrawal of LSMT included age of less than three years (OR 2.38, CI 1.34-4.23, p < 0.05) and NAT (OR 1.86, CI 1.02-3.41, p < 0.05).ConclusionNAT is associated with increased risk for withdrawal of LSMT in pediatric TBI. Age of less than three years is similarly associated with a higher risk for withdrawal of LSMT. Future research in this population is needed to determine what other factors predict withdrawal of LSMT and what resources, such as social workers and/or ethics consults, are utilized. (shrink)

Chiropractors commonly treat children for a variety of ailments by manipulating the spine to correct a ‘vertebral subluxation’ or a ‘vertebral subluxation complex’ alleged to be a cause of disease. Such treatment might begin soon after a child is born. Both major American chiropractic associations – the International Chiropractic Association and the American Chiropractic Association – support chiropractic care for children, which includes subluxation correction as a treatment or preventive measure. I do not know of any credible evidence to support (...) chiropractic subluxation theory. Any attempt to manipulate the immature, cartilaginous spine of a neonate or a small child to correct a putative chiropractic subluxation should be regarded as dangerous and unnecessary. Referral of a child to a chiropractor for such treatment should not be considered lest a bad outcome harms the child or leads to a charge of negligence or malpractice. (shrink)

Two pediatric accidents in Jane Austen’s Persuasion and one in Margaret Oliphant’s The Doctor’s Family are examined from the point of view of trauma management with analysis of contributing risk factors, medical management, concerns of parents and bystanders, and course of recovery. Risk factors for injury are impulsivity, poor supervision, and parents who are unable to set limits. Medical attention is swift and competent, but no heroic measures are used; the management of the injuries, concussion with loss of (...) consciousness and dislocation of the collar bone, is consistent with the way these conditions are, for the most part, still managed today, and successful recovery depends on careful nursing and rest. Louisa Musgrove, who suffers a severe head injury, requires ten weeks of convalescence and undergoes a marked personality change, which we might today attribute in part to post-concussion syndrome but which may reflect contemporary debate about the biological basis of personality and behavior. A sudden traumatic injury to a child or adolescent changes the narrative abruptly, in fiction or in life, dividing a story into before and after, introducing grief and anxiety, and requiring that plans be rethought and personal relationships reshuffled with decisions about caretaking and nursing. (shrink)

Hemiparetic stroke in adulthood often results in the grouped movement pattern of the upper extremity flexion synergy thought to arise from an increased reliance on cortico-reticulospinal pathways due to a loss of lateral corticospinal projections. It is well-established that the flexion synergy induces reaching constraints in individuals with adult-onset hemiplegia. The expression of the flexion synergy in individuals with brain injuries onset earlier in the lifespan is currently unknown. An early unilateral brain injury occurring prior to six months post (...) full-term may preserve corticospinal projections which can be used for independent joint control and thus minimizing the expression of the flexion synergy. This study uses kinematics of a ballistic reaching task to evaluate the expression of the flexion synergy in individuals with pediatric-onset hemiplegia (PH) ages six to seventeen years. Fifteen individuals with brain injuries before birth (n = 8) and around full-term (n = 7) and nine age-matched controls with no known neurological impairment completed a set of reaches in an admittance controlled robotic device. Descending drive, and the possible expression of the upper extremity flexion snergy, was modulated by increasing shoulder abduction loading. Individuals with early PH achieved lower peak velocities when reaching with the paretic arm compared to controls however no differences in reaching distance were found between groups. Relative maintenance in reaching seen in individuals with early brain injuries highlights minimal expression of the flexion synergy. We interpret this conservation of independent control of the paretic shoulder and elbow as the use of more direct corticospinal projections instead of indirect cortico-reticulospinal pathways used in individuals with adult-onset hemiplegia. (shrink)

Background: Mild traumatic brain injury results from an external force to the head or body causing neurophysiological changes within the brain. The number and severity of symptoms can vary, with some individuals experiencing rapid recovery, and others having persistent symptoms for months to years, impacting their quality of life. Current rehabilitation is limited in its ability to treat persistent symptoms and novel approaches are being sought to improve outcomes following mTBI. Neuromodulation is one technique used to encourage adaptive neuroplasticity (...) within the brain.Objective: To systematically review the literature on the efficacy of neuromodulation in the mTBI population.Method: A systematic review was conducted using Medline, Embase, PsycINFO, PsycARTICLES and EBM Review. Preferred Reporting Items for Systematic Reviews and the Synthesis Without Meta-analysis reporting guidelines were used and a narrative review of the selected studies was completed. Fourteen articles fulfilled the inclusion criteria which were published in English, investigating an adult sample and using a pre- and post-intervention design. Studies were excluded if they included non-mild TBI severities, pediatric or older adult populations.Results: Thirteen of fourteen studies reported positive reductions in mTBI symptomatology following neuromodulation. Specifically, improvements were reported in post-concussion symptom ratings, headaches, dizziness, depression, anxiety, sleep disturbance, general disability, cognition, return to work and quality of life. Normalization of working memory activation patterns, vestibular field potentials, hemodynamics of the dorsolateral prefrontal cortex and excessive delta wave activity were also seen. The studies reviewed had several methodological limitations including small, heterogenous samples and varied intervention protocols, limiting generalisability. Further research is required to understand the context in which neuromodulation may be beneficial.Conclusions: While these positive effects are observed, limitations included unequal representation of neuromodulation modalities in the literature, and lack of literature describing the efficacy of neuromodulation on the development or duration of persistent mTBI symptoms. Better clarity regarding neuromodulation efficacy could have a significant impact on mTBI patients, researchers, clinicians, and policy makers, facilitating a more productive post-mTBI population. Despite the limitations, the literature indicates that neuromodulation warrants further investigation. PROSPERO registration number: CRD42020161279. (shrink)

Thousands of youth suffering from acquired brain injury or other early-life neurological disease live, mature, and learn with only limited communication and interaction with their world. Such cognitively capable children are ideal candidates for brain-computer interfaces. While BCI systems are rapidly evolving, a fundamental gap exists between technological innovators and the patients and families who stand to benefit. Forays into translating BCI systems to children in recent years have revealed that kids can learn to operate simple BCI with proficiency (...) akin to adults. BCI could bring significant boons to the lives of many children with severe physical impairment, supporting their complex physical and social needs. However, children have been neglected in BCI research and a collaborative BCI research community is required to unite and push pediatric BCI development forward. To this end, the pediatric BCI Canada collaborative network was formed, under a unified goal to cooperatively drive forward pediatric BCI innovation and impact. This article reflects on the topics and discussions raised in the foundational BCI-CAN meeting held in Toronto, ON, Canada in November 2019 and suggests the next steps required to see BCI impact the lives of children with severe neurological disease and their families. (shrink)

Decision making for children who suffer abusive head trauma invokes multiple ethical considerations. The degree to which parents are permitted to participate in decision making after the injury has occurred is controversial. In particular, in this issue of The Journal of Clinical Ethics, Grigorian and colleagues raise concerns about the potential for conflict of interest in end-of-life decision making if the parents are facing criminal charges that could be escalated if the child dies. There are additional concerns about the (...) parents’ capacity to make decisions that are best for the child, given that the injury occurred. We argue that there are important reasons not to exclude parents from the decision-making process and that, with appropriate safeguards in place, parents are integral to determining what is best for the child. (shrink)

ObjectiveThe Spatial Learning Task of Lhermitte and Signoret is an object-location arbitrary associative learning task. The task was originally developed to evaluate adults with severe amnesia. It is currently used in populations where the memory system either is not yet fully developed or where it has been compromised (e.g. epilepsy, traumatic brain injury, electroconvulsive therapy, cerebrovascular disease and dementia). Normative data have been published for paediatric cohorts and for older adults, however no data exist for the intervening adult years.MethodHere, (...) we address this gap, collecting normative data from 101 adults aged 18–45.ResultsOur data indicate that performance on the Spatial Learning Task is not influenced by age, gender, level of education or overall IQ. Less than 10% of the variance in learning scores is associated with variability in verbal memory. Ninety percent of participants achieved perfect scores on two successive trials (T2Cr) within five or fewer trials on the Spatial Learning Task. A T2Cr score of 6 is suggestive of impairment and a T2Cr score of 7 or more is statistically abnormal.ConclusionThese data expand the clinical utility of the Spatial Learning Task in the adult population. Future work should examine performance in lower IQ cohorts, including intellectual disability, and explore sensitivity to disease factors such as laterality of mesial temporal lobe damage. (shrink)

Pediatric critical careCritical care refers to the health care of children with life-threatening illness or following major surgery or severe injury. This care is offered in different contexts across the globe. In well-resourced environments, critical careCritical care may be provided in pediatric intensive care units, which provide highly complex medical care with advanced, potentially expensive technological devices aimed primarily at sustaining life; whereas in poorly resourced regions, only primary care may be available for critically ill or injured (...) childrenInjured children. Even where PICU facilities are available, they are a scarce and expensive resource. The knowledge and ability to sustain a critically ill or injured child’sInjured children life, potentially with effects on the child and family’s quality of lifeQuality of life and at the expense of other children’s health care, leads to frequent ethical challenges. Ethical issues related to how best to ensure optimal quality of lifeQuality of life and the fair distribution of scarce resources are common. In-depth knowledge and understanding of the individual patient’s medical, scientific and psychosocial context, through interdisciplinary discussion and collaboration; as well as familiarity with the overriding, relevant ethico-legal policiesPolicy and principles is essential for appropriate decision-makingDecision-making. Truthful communicationCommunication with the family is essential, using a shared decision-makingDecision-making process, and the child’s best interestBest interest must be central to every decision. This chapter presents an overview of the recommended approach to, and important considerations for, ethical decision-makingDecision-making in the PICU, using a hypothetical case example. (shrink)

This paper examines the culture, the dynamics and the financial underpinnings that determine how medical research is being conducted on children in the United States. Children have increasingly become the subject of experiments that offer them no potential direct benefit but expose them to risks of harm and pain. A wide range of such experiments will be examined, including a lethal heartburn drug test, the experimental insertion of a pacemaker, an invasive insulin infusion experiment, and a fenfluramine "violence prediction" experiment. (...) Emphasis, however, is given to psychoactive drug tests because of the inherent ethical and diagnostic problems involved in the absence of any objective, verifiable diagnostic tool. Effort is made to provide readers comprehensive reference sources to evidence-based reports about the serious risks these drugs pose for adults and children so that the reader may judge whether the benefits (if any) outweigh the risks for children. The first ethical issue raised by these experiments is: did the severity of illness in these children justify their exposure to short and long-term risks? The ethics of the experiments will be evaluated by referring to existing codes of medical research ethics-the Nuremberg Code, the Declaration of Helsinki, and the federal Code of Regulations. The thirteen cases presented will demonstrate that children are being used in ever more speculative experiments, often in the absence of a therapeutic intent, but a significant chance for causing harm and / or discomfort. Some of the experiments were designed to explore the mechanisms of pathology and pharmacological interventions, or the response of neurological brain receptors to chemical provocation ("challenge"). Others were designed to test the safety or efficacy of new drugs, even to test these drugs on healthy children who were hypothesized to be "at risk." Children and adolescents have been subjected to "forced dose titration" experiments that induced a spectrum of severe adverse effects, including insomnia, extreme restlessness, agitation, (akathisia) and self-injurious behavior. FDA reports show that suicide is a significant issue in psychotropic drug trials-in pediatric trials the problem is even greater. The paper aims to demonstrate how the enactment of the Better Pharmaceuticals for Children Act (incorporated into the Food and Drug Administration Modernization Act, FDAMA), set in motion a radical shift in public policy by providing huge financial incentives to pharmaceutical companies to test new or patented drugs in children. Federal policy shifted from one aimed at protecting children by setting limits on permissible research risks, to a policy aimed at broadening the inclusion of children as test subjects. It will be shown how the FDA and the Department of Health and Human Services lifted regulatory restrictions to permit research involving greater than minimal risk to be conducted on healthy children, claiming that all children are potentially "at risk" of a future condition. Children were in this way deprived of regulatory protections. An argument will be made that the approval of nontherapeutic, harmful experiments-such as exposure of toddlers to lead poison-under the current gate keeping system raises serious doubts about the sustainability of institutional review boards (IRBs) as protectors of human research subjects. Children, who are precluded from exercising the adult human's right to informed consent, are being exploited as commodities for commercial ends. It is the position of the author that nothing less than the enactment of a federal law mandating a radical overhaul of the current research review system, with independent checks and balances, will provide children the legal protections they need. Ten specific recommendations are offered to protect children from harmful experiments. (shrink)

Emergency medicine research requires the enrollment of subjects with varying decision-making capacities, including capable adults, adults incapacitated by illness or injury, and children. These different categories of subjects are protected by multiple federal regulations. These include the federal Common Rule, the Department of Health and Human Services (DHHS) regulations for pediatric research, and the Food and Drug Administration's (FDA) Final Rule for the Exception from the Requirements of Informed Consent in Emergency Situations. Investigators should be familiar with the (...) relevant federal research regulations to optimally protect vulnerable research subjects, and to facilitate the institutional review board (IRB) review process. IRB members face particular challenges in reviewing emergency research. No regulations exist for research enrolling incapacitated subjects using proxy consent. The wording of the Final Rule may not optimally protect vulnerable subjects. It is also difficult to apply conflicting regulations to a single study that enrolls subjects with differing decision-making capacities. This article is intended as a guide for emergency researchers and IRB members who review emergency research. It reviews the elements of Federal Regulations that apply to consent, subject selection, privacy protection, and the analysis of risks and benefits in all emergency research. It explores the challenges for IRB review listed above, and offers potential solutions to these problems. (shrink)

The number of family members caring and caregiving for a loved one undergoing physical and mental changes continues to increase dramatically. For many, this ongoing experience not only involves the “burden of caregiving” but also the “burden of grief” as their loved-one’s newfound medical condition can result in the loss of the person they previously knew. Dramatic cognitive, behavioral, and personality changes, often leave caregivers bereft of the significant relationship they shared with the affected person prior to the illness or (...) injury. This results in what we term conditions of acquired “non-death interpersonal loss”. Current approaches to these losses use an amalgam of models drawn from both death and non-death loss. Despite their utility, these frameworks have not adequately addressed the unique processes occurring in the interpersonal sphere where the grieving caregiver needs to reach some modus vivendi regarding the triad of “who the person was,” “who they are now,” and “who they will yet become.” In this paper we propose a process-based model which addresses cognitive-emotional-behavioral challenges caregivers meet in the face of their new reality. These require a revision of the interpersonal schemas and the relationships that takes into account the ongoing interactions with the affected family member. The model and its utility to identify adaptive and maladaptive responses to NoDIL is elaborated upon with clinical material obtained from caregivers of people diagnosed with major neuro-cognitive disorder and pediatric traumatic brain injury. The article concludes with implications for theory, research and clinical intervention. (shrink)

In a reply to Ross, I argue that, as head injuries often lack external indicators, it is imperative that youth-patient-athletes themselves be convinced to report these injuries. Parents, although part of the pediatric triad, will be no help if the adolescent chooses to conceal the information from them as well. Further, I explain why a more deliberate focus on the role of parents in this relationship does not alter my support of the compromising interpretive model as a harm reduction (...) strategy. (shrink)

Background: There are few standardized measures available to assess executive function in a naturalistic setting for children. The Children’s Cooking Task is a complex test that has been specifically developed to assess EF in a standardized open-ended environment. The aim of the present study was to evaluate the internal consistency, inter-rater reliability, sensitivity and specificity, and also convergent and divergent validity of the Norwegian version of CCT among children with pediatric Acquired Brain Injury and healthy controls.Methods: The present (...) study has a cross-sectional design, based on baseline data derived from a multicenter RCT. Seventy-five children with pABI from two university hospitals with parent-reported executive dysfunction and minimum of 12 months since injury/completed cancer therapy, as well as 59 HCs aged 10–17 years, were assessed with CCT using total errors as the main outcome measure. The pABI group completed tests assessing EF on the impairment level within the ICF framework, and on the participation level. In addition, they completed tests of intellectual ability, processing speed, attention, learning, and memory. Finally, overall functional outcome was evaluated for the children with pABI.Results: Acceptable internal consistency and good inter-rater reliability were found for the CCT. Children with pABI performed significantly worse on the CCT than the HCs. The CCT identified group membership, but the sensitivity and specificity were overall classified as poor. Convergent validity was demonstrated by associations between the CCT and performance-based tests assessing inhibition, cognitive flexibility, and working memory, as well as teacher-reported executive dysfunction. Divergent validity was supported by the lack of association with performance-based measures of learning and memory, attention, and verbal intellectual ability. However, there was a moderate association between the CCT and performance-based tests of processing speed. Lastly, better performance on the CCT was associated with a better functional outcome.Conclusion: Our study with a relatively large sample of children with pABI and HC’s demonstrated good psychometric properties of the CCT. CCT performance was associated with the overall level of disability and function, suggesting that CCT is related to the level of activity in everyday life and participation in society. Hence, our study suggests that the CCT has the potential to advance the assessment of EF by providing a valid analysis of real-world performance. Nevertheless, further research is needed on larger samples, focusing on predictors of task performance, and evaluating the ability of CCT to detect improvement in EF over time. The patterns of error and problem-solving strategies evaluated by the CCT could be used to inform neuropsychological rehabilitation treatmentand represent a more valid outcome measure of rehabilitation interventions. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Whisper Before You GoJohn K PettyDavid came with a bang.1A momentary prelude from a dysphonic chorus of pagers announce “Level 1 Pediatric Trauma—MVC ejected” before the abrupt crescendo of the trauma bay doors opening. He is maybe two. Maybe three–years–old. It is hard to tell when a child is strapped in, strapped down, nonverbal, intubated, and alone.The flight team speaks for him, “Four–year–old boy improperly restrained in a (...) single–vehicle crash into a ditch. He was partially ejected. He was unresponsive and pulseless at the scene. He got CPR and code drugs, and they got a pulse back. Emergency medical service (EMS) took him to the nearest hospital where they needled his chest, called for air transport, and scanned him up. He has been shocky for us since we picked him up. Glasgow Coma Scale (GCS) has been three the whole time. They said his head scan showed subarachnoid hemorrhage.”With the words of the flight team as background narrative, we get about doing our thing—hopefully more method and less madness. Bang, bang, bang! Check the tube. Vital signs. IV fluids. Place a chest tube. Hang the blood. Quick X–ray. Neuro exam—nothing. Get him off the board. Warm him up. Place the orogastric (OG) tube. Bang, bang, bang!The neurosurgery resident opens the CT scans from the other hospital. The brain and cervical spine scans show a disaster: some swelling and bleeding in the higher brain, but the worst damage is in the lower brain, brainstem, and top of the spinal cord. I have heard a neurosurgeon describe this pattern before as “internal decapitation.” Such language never makes it into the patient’s chart. For David the last two words of the neurosurgery consult note will eventually read, “Prognosis grim.”He remains unstable in the trauma bay. Inaction is death. We ultrasound his heart, abdomen, and pelvis. He has fluid that shouldn’t be around his heart. He is dying of the neuro injury we cannot control, but the pericardial fluid might be giving him shock, and we can control that. We can’t ignore the fluid. Shouldn’t ignore it. At least, wouldn’t ignore it. So, we bang up to the operating room. Squeezing blood. Spiking fluid. Oxygen tank and crash cart. Up we go.In the operating room, we do much and we do well. We release the fluid around the heart and find it was CPR, not heart injury that put it there. In the pericardial flash we get a view of the cardiac athlete, pounding like the 26th mile of the marathon. We explore the abdomen and find it swollen but innocent of an injury that would take his life. We place our lines and tubes as the neurosurgeons place theirs. If nothing else, we will be able to measure what lies ahead.“Good work, team,” and we bump the door on the way to the pediatric intensive care unit (PICU).The care in the PICU is more Apache brave than Gaelic knight—more bottles, fewer scissors. The curtains and carpets mute the tones. Our efforts continue, but I get a word that David’s father has arrived. He is sitting in a small, private waiting room off of the main PICU waiting room. The PICU staff colloquially refer to this as “the bad news room.” I take a seat next to a solitary man who is having the worst day of his life. His worst day so far.“I am Dr. Petty, and I am one of the doctors who is taking care of your son. I am very sorry about what has happened. Maybe you can tell me a little bit about what you understand is going on, and I’ll tell you what I know.” [End Page 17]He tells me that his wife was driving David back from her sister’s house, just the two of them. He doesn’t know what happened, but he got a call from the other hospital about the crash. His wife was badly hurt. He heard that David had died, but they got him back. Both were transferred up to the... (shrink)

Introduction: Evidence supporting the use of music interventions to maximize arousal and awareness in adults presenting with a disorder of consciousness continues to grow. However, the brain of a child is not simply a small adult brain, and therefore adult theories are not directly translatable to the pediatric population. The present study aims to synthesize brain imaging data about the neural processing of music in children aged 0-18 years, to form a theoretical basis for music interventions with children presenting (...) with a disorder of consciousness following acquired brain injury.Methods: We conducted a systematic review with narrative synthesis utilizing an adaptation of the methodology developed by Popay and colleagues. Following the development of the narrative that answered the central question “what does brain imaging data reveal about the receptive processing of music in children?”, discussion was centered around the clinical implications of music therapy with children following acquired brain injury.Results: The narrative synthesis included 46 studies that utilized EEG, MEG, fMRI, and fNIRS scanning techniques in children aged 0-18 years. From birth, musical stimuli elicit distinct but immature electrical responses, with components of the auditory evoked response having longer latencies and variable amplitudes compared to their adult counterparts. Hemodynamic responses are observed throughout cortical and subcortical structures however cortical immaturity impacts musical processing and the localization of function in infants and young children. The processing of complex musical stimuli continues to mature into late adolescence.Conclusion: While the ability to process fundamental musical elements is present from birth, infants and children process music more slowly and utilize different cortical areas compared to adults. Brain injury in childhood occurs in a period of rapid development and the ability to process music following brain injury will likely depend on pre-morbid musical processing. Further, a significant brain injury may disrupt the developmental trajectory of complex music processing. However, complex music processing may emerge earlier than comparative language processing, and occur throughout a more global circuitry. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Am I the Bad Guy?Tavishi ChopraWhat do you do when the 6-year-old patient you have vowed to protect suddenly deems you the bad guy?The afternoon started out like any typical afternoon during my inpatient pediatric rotation. We had finished rounding, grabbed lunch, and began to see our new admits. My residents told me to go see a 6-year-old, Ela, in the ED. All I knew was that she (...) had a burn injury. As I walked to her ED room, my heart sank.Burns from cigarette stumps covered her torso and back. She was holding her shirt off her chest to prevent the excruciating pain caused by her t-shirt rubbing against her skin. As soon as Ela made eye contact with me, she immediately started crying and exclaiming, "Mommy didn't mean to!" confirming exactly what I thought. These burns were inflicted from someone she loved.Ela was eventually admitted into the hospital, and the Department of Child Services was contacted. Little did I know that I would be so conflicted by this decision.DCS launched an investigation on Ela's mom, but during the investigation, Ela's mom was permitted at her bedside. It was very clear that Ela felt protected and loved by her mom. Often it was only her mom who could get her to stop crying during the painful dressing changes. I felt torn allowing Ela's mom to have such a strong presence in Ela's hospital stay. To me, nothing in the world can justify hurting a child so cruelly, and inflicting that pain so many times. However, my job was to help Ela heal. That meant that because Ela turned to her mom for support, I also needed to include Ela's mom in our medical decisions. I buried away any negative feelings I had, and I proceeded to interact with Ela's mom in a professional manner.It was this that allowed me to get to understand Ela's mom a little bit more. She was a single mom [End Page E8] working multiple jobs to help keep her family afloat. She often lived her day on three to four hours of sleep, so she was very tired. The sleep deprivation made her frustrated more easily, and she didn't have a healthy outlet to release her emotions. Unfortunately, Ela was on the receiving end of that frustration.Hearing her story made me even more angry, confused, and upset that a child suffered. I strongly believed that as adults, we should have better control of our emotions, and sleep deprivation and frustration weren't an excuse. I couldn't find it in me to respect Ela's mom, who I shamefully began to avoid.I still wanted to bond with Ela and show her unconditional love. When Ela's mom was at work, I would use that opportunity to go and spend time with her. We would play "princesses," blow bubbles together, and turn dressing changes into a game. We formed a special bond, and I always made it a goal to go and spend some time with her every day.DCS, meanwhile, was actively conducting an investigation. They interviewed Ela's mom, Ela's siblings, and Ela. The findings of their investigation revealed that Ela's mom often would lose her temper, and the kids feared their mom. Hearing this further proved to me that I did not need to interact with Ela's mom. Embarrassingly, it was just as much a priority for me to avoid Ela's mom as it was to spend time with Ela.DCS eventually concluded that Ela's mom would lose custody of Ela for the time being. Because of the connection that Ela and I had, I took it upon myself to deliver the news to her. Our bond was shattered right then and there. She immediately began to cry, told me she hated me, and asked me to leave the room. Anytime I would go into her room after that, she would start screaming and refused to talk to me. In a span of five minutes, Ela's mom made a decision that destroyed their family... (shrink)

The potential anesthetic neurotoxicity on the neonate is an important focus of research investigation in the field of pediatric anesthesiology. It is essential to understand how these anesthetics may affect the development and growth of neonatal immature and vulnerable brains. Functional magnetic resonance imaging has suggested that using anesthetics result in reduced functional connectivity may consider as core sequence for the neurotoxicity and neurodegenerative changes in the developed brain. Anesthetics either directly impact the primary structures and functions of the (...) brain or indirectly alter the hemodynamic parameters that contribute to cerebral blood flow in neonatal patients. We hypothesis that anesthetic agents may either decrease the brain functional connectivity in neonatal patients or animals, which was observed by fMRI. This review will summarize the effect and mechanism of anesthesia on the rapid growth and development infant and neonate brain with fMRI through functional connectivity. It is possible to provide the new mechanism of neuronal injury induced by anesthetics and objective imaging evidence in animal developing brain. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Sweating the Small StuffTim CunninghamAs an emergency nurse, I often do not notice the small stressors as compared to the loads of intense physical and emotional suffering I witness while working at a level–one–trauma center. The horrendous deaths and injuries caused by gun violence, motorized vehicles, people in emotional distress and those suffering from chronic diseases build up on the mind as a veritable ‘scrapbook of nightmares.’ Emergency providers (...) know, in taking on this profession, that this is ‘all in a day’s work.’ Consequently, we put our selves at risk for emotional burnout as we bear witness to profound suffering while trying to improve lives.I see the traumas, the end–of–life decision making thrust upon families amidst a medical crisis and the other aspects of emergent suffering as bails of hay, against which I tried to build coping mechanisms in order to experience them but also be able to let go. For the most part I am confident to report that I have been able to work through major traumatic situations without belaboring the emotional residue. What I have failed to notice though are not the bails of hay, but individual straws of which they are made.A straw that nearly broke my back came to my pediatric emergency room as a 9–year–old girl who was involved in a low speed motor vehicle collision. She was restrained in the passenger seat; and although she was walking at the scene and crying, she was backboarded by EMS and placed in a cervical spine brace. On arrival to our emergency department she presented with normal vital signs and mutation. Her only complaint was diffuse abdominal pain. We preformed a FAST (Focused Assessment with Sonography for Trauma) exam, which was negative for free abdominal blood. Despite our efforts to make the patient comfortable, we were unable to ease her pain. The patient reported that her pain decreased after we took her off the backboard, but she still did not feel herself.Our attending and resident physicians decided that this child should have an abdominal computed tomography scan (CT) to rule out organ damage with subsequent bleeding. According to hospital protocol, this decision was within our standards of care. I stood by the family when the physician team discussed the plan of care and noticed the parents’ collective body language, which was troubled. I left the room with the physicians but not long after, the family subtly requested that I speak with them.The family was concerned about the radiation to which their child would be exposed. At the same time, they too were concerned about her abdominal pain and understood that a CT could confirm serious abdominal injury. They knew the gravity of the worst–case scenario and wanted to do what was best for their child.The mother asked me if this girl were my child what would I do.My first thought was: No CT, go home, watch her and return if symptoms worsen. My second thought conflicted with the first as I realized this was instruction that fell out of protocol differing from the opinions of the physician team. I paused before responding and found myself sputtering some pointless information about CT scans and mechanisms of injuries sustained from car accidents—I [End Page E9] was filling space, avoiding their question as I pondered the best answer.The girl’s parents told me that one was leaning towards the CT and the other against, they wanted my advice to make a decision. They pressed me saying, “What would you do.” Although I felt an uneasiness and nausea in that moment, I told them my truth, which was that I would go home without the CT.The family appeared relieved and I felt the sensation of stress leaving my body as if I had just taken a deep breath. Contented, but a daughter still with abdominal pain, the family left that evening with specific instructions to watch for adverse symptoms.In that moment, I felt like I had done the right thing but by the end of my shift I left work questioning my choice. I lost sleep that night because of... (shrink)

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

A summary of the existing literature related to moral distress (MD) and the paediatric intensive care unit (PICU) reveals a high-tech, high-pressure environment in which effective teamwork can be compromised by MD arising from different situations related to: consent for treatment, futile care, end-of-life decision making, formal decision-making structures, training and experience by discipline, individual values and attitudes, and power and authority issues. Attempts to resolve MD in PICUs have included the use of administrative tools such as shift worksheets, the (...) implementation of continuing education, and encouragement to report. The literature does not yet show these approaches to be effective in the resolution of MD. The need to acknowledge MD among PICU teams is discussed and an argument made that, to facilitate understanding among team members, practice stories need to be shared. (shrink)

Gilles de la Tourette syndrome (TS) is a childhood neuropsychiatric disorder characterised by the presence of motor and vocal tics. Patients with malignant TS experience severe disease sequelae; risking morbidity and mortality due to tics, self-harm, psychiatric comorbidities and suicide. By definition, those cases termed ‘malignant’ are refractory to all conventional psychiatric and pharmacological regimens. In these instances, deep brain stimulation (DBS) may be efficacious. Current 2015 guidelines recommend a 6-month period absent of suicidal ideation before DBS is offered to (...) patients with TS. We therefore wondered whether it may be ethically justifiable to offer DBS to a minor with malignant TS. We begin with a discussion of non-maleficence and beneficence. New evidence suggests that suicide risk in young patients with TS has been underestimated. In turn, DBS may represent an invaluable opportunity for children with malignant TS to secure future safety, independence and fulfilment. Postponing treatment is associated with additional risks. Ultimately, we assert this unique risk-benefit calculus justifies offering DBS to paediatric patients with malignant TS. A multidisciplinary team of clinicians must determine whether DBS is in the best interest of their individual patients. We conclude with a suggestion for future TS-DBS guidelines regarding suicidal ideation. The importance of informed consent and assent is underscored. (shrink)

PurposeAdolescents develop their decision-making ability as they transition from childhood to adulthood. Participation in their medical care should be encouraged through obtaining assent, as recommended by the American Academy of Pediatrics (AAP). In this research, we aim to define the current knowledge of AAP recommendations and surgeon practices regarding assent for elective reconstructive procedures.MethodsAn anonymous electronic survey was distributed to North American paediatric surgeons and fellows through the American Pediatric Surgical Association (n=1353).ResultsIn total, 220 surgeons and trainees responded (16.3%). (...) Fifty per cent of the surgeons who are familiar with the concept of assent had received formal training; 12% of the respondents had not heard of assent before the survey. Forty-seven per cent were aware of the 2016 AAP policy statement regarding assent in paediatric patients. Eighty-nine per cent always include adolescents as part of the consent discussion. Seventy-seven per cent solicit an expression of willingness to accept the proposed care from the patient. The majority (74%) of the surgeons perceived patient cooperation/understanding as the biggest barrier to obtaining assent. Over half of the respondents would consider proceeding with elective surgery despite the adolescent patient’s refusal. Reasons cited for proceeding with elective surgery include surgeons’ perception of medical necessity, perceptions of disease urgency, and lack of patient maturity.ConclusionPaediatric surgeons largely acknowledge the importance of assent, but variably practice the principles of obtaining assent from adolescent patients undergoing elective reconstructive procedures. Fewer surgeons are explicitly aware of formal policy statements or received formal training. Additional surgeon education and institutional policies are warranted to maximise inclusion of adolescents in their medical care. (shrink)

Clinical trials of xenotransplantation (XTx) may begin early in the next decade, with kidneys from genetically modified pigs transplanted into adult humans. If successful, transplanting pig hearts into children with advanced heart failure may be the next step. Typically, clinical trials have a specified end date, and participants are aware of the amount of time they will be in the study. This is not so with XTx. The current ethical consensus is that XTx recipients must consent to lifelong monitoring. While (...) this presents challenges to the right to withdraw in the adult population, additional and unanswered questions also linger in the paediatric population. In paediatric XTx, parents or guardians consent not only to the initial treatment of the child but also to lifelong monitoring, thus making a decision whose consequences will remain present as the child develops the capacity for assent, and finally the capacity for informed consent or refusal. This article presents and evaluates unanswered paediatric ethical questions in regard to the right to withdraw from XTx follow-up in the paediatric population. (shrink)

Interactive technology assessment is a novel approach to evaluating (health) technology, which philosophically draws from the works of Rawls and Habermas. That is, it seeks to organise a practical setting for discursive ethics in order to find a legitimate basis for policy to be pursued when the technology under scrutiny features a moral controversy. Interactive technology assessment involves a cycle of interviews with all stakeholders, who are explicitly asked to respond (anonymously) to the concerns and issues raised by other participants. (...) This cycle is completed repeatedly, so that a process of vicarious learning develops. This process aims at identifying issues agreed and disagreed upon, on the basis of which widely endorsed policy recommendations can be formulated. This chapter involves an interactive technology assessment of paediatric cochlear implantation. The rationale, the design, and the results are explained, as well as the main ethical aspects of the procedure. (shrink)

The facilitation of tight regulatory frameworks necessary to ensure that new drugs are safe and effective have yet to be effectively applied within the paediatric population. Utilization of unlicensed and off-label drugs in children results in a variety of problems ranging from inefficacy, adverse reactions and in some cases death. This ethically questionable behaviour has led the European government to legally force pharmaceutical companies to propose paediatric applications and carry out clinical studies at early stages of drug development. The new (...) European Paediatric Regulation implemented in 2007 opens a new era of paediatric drug development and will offer the opportunity to vastly improve children's health. However, this brighter outlook for the paediatric community might encourage potentially unethical behaviour in a pharmaceutical industry that finds itself in economically unstable times. The article records the gradual evolution of the US Paediatric Exclusivity Plan and the underlying principle of the newly introduced European Paediatric Regulation. It discusses some of the potential drawbacks and detrimental consequences of implementing the new European regulation, and the prospects of avoiding these by critically evaluating the difficulties experienced by the US. (shrink)

In paediatric oncology, research and treatments are often closely combined, which may compromise voluntary informed consent of parents. We identified two key scenarios in which voluntary informed consent for paediatric oncology studies is potentially compromised due to the intertwinement of research and care. The first scenario is inclusion by the treating paediatric oncologist, the second scenario concerns treatments confined to the research context. In this article we examine whether voluntary informed consent of parents for research is compromised in these two (...) scenarios, and if so whether this is also morally problematic. For this, we employ the account of voluntary consent from Nelson and colleagues, who assert that voluntary consent requires substantial freedom from controlling influences. We argue that, in the absence of persuasion or manipulation, inclusion by the treating physician does not compromise voluntariness. However, it may function as a risk factor for controlling influence as it narrows the scope within which parents make decisions. Furthermore, physician appeal to reciprocity is not controlling as it constitutes persuasion. In addition, framing information is a form of informational manipulation and constitutes a controlling influence. In the second scenario, treatments confined to the research context qualify as controlling if the available options are restricted through manipulation of options. Although none of the influences is morally problematic in itself, a combination of influences may create morally problematic instances of involuntary informed consent. Therefore, safeguards should be implemented to establish an optimal environment for parents to provide voluntary informed consent in an integrated research-care context. (shrink)

Genomic sequencing (GS) is increasingly used in paediatric medicine to aid in screening, research and treatment. Some health systems are trialling GS as a first-line test in newborn screening programmes. Questions about what to do with genomic data after it has been generated are becoming more pertinent. While other research has outlined the ethical reasons for storing deidentified genomic data to be used in research, the ethical case for storing data for future clinical use has not been explicated. In this (...) paper, we examine the ethical case for storing genomic data with the intention of using it as a lifetime health resource. In this model, genomic data would be stored with the intention of reanalysis at certain points through one’s life. We argue this could benefit individuals and create an important public resource. However, several ethical challenges must first be met to achieve these benefits. We explore issues related to privacy, consent, justice and equality. We conclude by arguing that health systems should be moving towards futures that allow for the sequential interrogation of genomic data throughout the lifespan. (shrink)

The case of Alta Fixsler, where a judge ruled that withdrawing life sustaining care was in her best interest rather than transferring her to Israel, as her parents wanted, is the latest in a series of controversial paediatric best interest decisions. Using this case, as well as some other recent cases, I argue that the UK exhibits a high degree of medico-legal paternalism in best interest decisions, even though paternalism seems to be ubiquitously negatively perceived in medical ethics. Firstly, I (...) explain what I mean by medico-legal paternalism and defend my claim that this phenomenon is present in the UK. I then argue that at least philosophically (rather than legally) such a situation is impossible to justify in a secular state and that how we treat paediatric best interest decisions is very different from other areas of medical law. Lastly, I discuss proposals that aim to rectify this situation. (shrink)

Potential conflicts between the roles of physicians and researchers have been described at the theoretical level in the bioethics literature (Czoli, et al., 2011). Physicians and researchers are generally in mutually distinct roles, responsible for patients and participants respectively. With increasing emphasis on integration of research into clinical settings, however, the role divide is sometimes unclear. Consequently, physician–researchers must consider and negotiate salient ethical differences between clinical– and research–based obligations (Miller et al, 1998). This paper explores the subjective experiences and (...) perspectives of 30 physician–researchers working in three Canadian paediatric settings. Drawing on qualitative interviews, it identifies ethical challenges and strategies used by physician–researchers in managing dual roles. It considers whether competing obligations could have both positive and adverse consequences for both physician–researchers and patients. Finally, we discuss how empirical work, which explores the perspectives of those engaged in research and clinical practice, can lead the way to understanding and promoting best practice. (shrink)

Background: It is stated that the communication and disease experiences of paediatric patients, especially paediatric oncology patients, with healthcare professionals are completely different from those of adults. Objective: The aim of this study was to determine the definitions of a good physician and good nurse provided by elementary school-age oncology patients. Research design: In this qualitative research, data were collected through semi-structured individual interviews. The data were evaluated thorough thematic analysis. Participants and research context: Eighteen children hospitalised due to cancer (...) in paediatric oncology and haematology clinics of a university hospital in Turkey. Ethical considerations: Permission to conduct the study was obtained from the Institution’s Ethics Committee. The objectives of this study were explained to the participants and families, and written consent was obtained from them. Also, participants were assured that necessary measures would be taken to protect their anonymity and confidentiality. Findings: The definitions of children were based on five main themes: interpersonal relationships, virtues, professional responsibility, security and individual characteristics. Conclusion: Children conveyed important messages to health professionals. They emphasised that a good physician and good nurse should communicate well, not only with themselves but also with their family. In addition, children were sensitive about health professionals who played with them and actively participated in the treatment by informing them about the disease. Meeting the expectations of children can be possible by improving the communication skills of physicians and nurses and by adding games and activities to the treatment and care plan. (shrink)

When a minor research participant reaches the age of majority or the level of maturity necessary to be granted legal decision-making capacity, reconsent can be required for ongoing participation in research or use of health information and banked biological materials. Despite potential logistical concerns with implementation and ethical questions about the trade-offs between maximising respect for participant agency and facilitating research that may generate benefits, reconsent is the approach most consistent with both law and research ethics.Canadian common law consent requirements (...) are expansive and likely compel reconsent on obtaining capacity. Common law doctrine recognises that children are entitled to decision-making authority that reflects their evolving intelligence and understanding. Health consent legislation varies by province but generally either compels reconsent on obtaining capacity or delegates the ability to determine reconsent to research ethics boards. These boards largely rely on the Canada’s national ethics policy, the Tri-Council Policy Statement, which states that, with few exceptions, reconsent for continued participation is required when minors gain capacity that would allow them to consent to the research in which they participate. A strict interpretation of this policy could require researchers to perform frequent capacity assessments, potentially presenting feasibility concerns. In addition, Canadian policy and law are generally consistent with the core principles of key international ethical standards from the United Nations and elsewhere.In sum, reconsent of paediatric participants upon obtaining capacity should be explicit and informed in Canada, and should not be presumed from continued participation alone. (shrink)

Background: Providing oncological care to children is demanding and ethical issues concerning what is best for the child can contribute to moral distress. Objectives: To explore healthcare professionals’ experiences of situations that generate moral distress in Swedish paediatric oncology. Research design: In this national study, data collection was conducted using the Swedish Moral Distress Scale-Revised. The data analysis included descriptive statistics and non-parametric analysis of differences between groups. Participants and research context: Healthcare professionals at all paediatric oncology centres in Sweden (...) were invited to participate. A total of 278 healthcare professionals participated. The response rate was 89%. Ethical considerations: In its advisory statement, the Regional Ethical Review Board decided that the study was of such a nature that the legislation concerning ethical reviews was not applicable. All participants received written information about the aim of the study and confidentiality. Participants demonstrated their consent by returning the survey. Findings: The two situations with the highest moral distress scores concerned lack of competence and continuity of personnel. All professional groups reported high levels of disturbance. Nurses rated significantly higher frequencies and higher total Moral Distress Scale scores compared to medical doctors and nursing assistants. Discussion: Lack of competence and continuity, as the two most morally distressing situations, confirms the findings of studies from other countries, where inadequate staffing was reported as being among the top five morally distressing situations. The levels of total Moral Distress Scale scores were more similar to those reported in intensive care units than in other paediatric care settings. Conclusion: The two most morally distressing situations, lack of competence and continuity, are both organisational in nature. Thus, clinical ethics support services need to be combined with organisational improvements in order to reduce moral distress, thereby maintaining job satisfaction, preventing a high turnover of staff and ensuring the quality of care. (shrink)

Paediatric cancer care poses ethically difficult situations that can lead to value conflicts about what is best for the child, possibly resulting in moral distress. Research on moral distress is lacking in paediatric cancer care in Sweden and most questionnaires are developed in English. The Moral Distress Scale-Revised is a questionnaire that measures moral distress in specific situations; respondents are asked to indicate both the frequency and the level of disturbance when the situation arises. The aims of this study were (...) to translate and culturally adapt the questionnaire to the context of Swedish paediatric cancer care. In doing so we endeavoured to keep the content in the Swedish version as equivalent to the original as possible but to introduce modifications that improve the functional level and increase respondent satisfaction. The procedure included linguistic translation and cultural adaptation of MDS-R’s paediatric versions for Physicians, Nurses and Other Healthcare Providers to the context of Swedish paediatric cancer care. The process of adjustment included: preparation, translation procedure and respondent validation. The latter included focus group and cognitive interviews with healthcare professionals in paediatric cancer care. To achieve a Swedish version with a good functional level and high trustworthiness, some adjustments were made concerning design, language, cultural matters and content. Cognitive interviews revealed problems with stating the level of disturbance hypothetically and items with negations caused even more problems, after having stated that the situation never happens. Translation and cultural adaptation require the involvement of various types of specialist. It is difficult to combine the intention to keep the content as equivalent to the original as possible with the need for modifications that improve the functional level and increase respondent satisfaction. The translated and culturally adapted Swedish MDS-R seems to have equivalent content as well as improved functional level and respondent satisfaction. The adjustments were made to fit paediatric cancer care but it could be argued that the changes are relevant for most areas of paediatric care of seriously ill patients. (shrink)

Informed consent is an essential requirement for the ethical conduct of research. It is also a necessary requirement for the lawful conduct of research. Informed consent provides a legal basis to enrol human subjects in clinical research. In paediatric research, where children do not generally enjoy a presumption of competence, a legal representative must authorise a child's enrolment. Determining who should act on behalf of the child is a matter of law, rather than ethical principle. But, if national laws are (...) lacking or do not reflect socio-cultural realities, legal uncertainty can arise, which can have implications for children's enrolment in clinical research. Using Thailand as its case study, this paper contemplates how international legal frameworks, such as the UN Convention on the Rights of the Child, could be leveraged to navigate legal uncertainty in the informed consent process, enabling more children to access and participate in paediatric clinical research. (shrink)

Objective We sought to understand ethics and education needs of emergency nurses and physicians in paediatric and adult emergency departments in order to build ethics capacity and provide a foundation for the development of an ethics education programme. Methods This was a prospective cross-sectional survey of all staff nurses and physicians in three tertiary care EDs. The survey tool, called Clinical Ethics Needs Assessment Survey, was pilot tested on a similar target audience for question content and clarity. Results Of the (...) 123 participants surveyed, 72% and 84% of nurses and physicians fully/somewhat agreed with an overall positive ethical climate, respectively. 69% of participants reported encountering daily or weekly ethical challenges. Participants expressed the greatest need for additional support to address moral distress, conflict management with patients or families and resource issues. Of the 23 reported occurrences of moral distress, 61% were associated with paediatric mental health cases. When asked how the ethics consultation service could be used in the ED, providing education to teams was the most desired method. Conclusions Nurses report a greater need for ethics education and resources compared with their physician colleagues. Ethical challenges in paediatric EDs are more prevalent than adult EDs and nurses voice specific moral distress that are different than adult EDs. These results highlight the need for a suitable educational strategy, which can be developed in collaboration with the leadership of each ED and team of hospital ethicists. (shrink)

Background: Ethical climate and moral distress have been shown to affect nurses’ ethical behaviour. Despite the many ethical issues in paediatric oncology nursing, research is still lacking in the field. Research aim: To investigate paediatric oncology nurses’ perceptions of ethical climate and moral distress. Research design: In this cross-sectional study, data were collected using Finnish translations of the Swedish Hospital Ethical Climate Survey–Shortened and the Swedish Moral Distress Scale–Revised. Data analysis includes descriptive statistics and non-parametric analyses. Respondents and research context: (...) Ninety-three nurses, working at paediatric oncology centres in Finland, completed the survey. Ethical considerations: According to Finnish legislation, no ethical review was needed for this type of questionnaire study. Formal research approvals were obtained from all five hospitals. Return of the questionnaire was interpreted as consent to participate. Results: Ethical climate was perceived as positive. Although morally distressing situations were assessed as highly disturbing, in general they occurred quite rarely. The situations that did appear often reflected performing procedures on school-aged children who resist such treatment, inadequate staffing and lack of time. Perceptions of ethical climate and frequencies of morally distressing situations were inversely correlated. Discussion: Although the results echo the recurrent testimonies of busy work shifts, nurses could most often practise nursing the way they perceived as right. One possible explanation could be the competent and supportive co-workers, as peer support has been described as helpful in mitigating moral distress. Conclusion: Nurturing good collegial relationships and developing manageable workloads could reduce moral distress among nurses. (shrink)

Person‐centred care, with its central focus on the patient in partnership with healthcare practitioners, is considered to be the contemporary gold standard of care. This type of care implies effective communication from and by both the patient and the healthcare practitioner. This is often problematic in the case of the paediatric population, because of the many communicative challenges that may arise due to the child's developmental level, illness and distress, linguistic competency and disabilities. The principle of universal design put forth (...) in conventions and legislation means that the design of products and services should be usable by all people, to the greatest extent possible. Augmentative and alternative communication encompasses strategies, for example pictures and apps, that are typically used with people with communication disability. In this position paper, we argue for the universal use of augmentative and alternative communication to support person‐centred communication and care for children, regardless of age or potential disability. Clinical examples are shared from three different paediatric care settings where pictorial supports were applied universally. Interviews were conducted with children and adolescents (with and without disabilities), parents and healthcare practitioners, and the principles of universal design were used as a framework to demonstrate how person‐centred communication is supported in paediatric care. (shrink)