Caregiver Perspectives on Provider Continuity During Prolonged PICU Hospitalizations: A Single-Center Qualitative Study, 2021-2022.

Objectives: To improve continuity of care, some PICUs assign a continuity attending (CA) physician for children with prolonged hospitalizations. Little is known about how this intervention impacts familial caregivers' experiences. The objective of this study was to provide in-depth descriptions of family perspectives about continuity of care during prolonged PICU hospitalizations for children with and without a PICU CA.

Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit.

Families and clinicians approaching a child's death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child's best interest, finding an optimal balance of benefit over harm, and sometimes addressing potential futility and moral distress. The best interest standard (BIS) is often marshalled by clinicians to help navigate these dilemmas and focuses on a clinician's primary ethical duty to the paediatric patient. This approach does not consider a clinician's potential duty to the patient's family.

An ethical analysis of obesity as a contraindication to pediatric liver transplant candidacy.

Childhood obesity is becoming more prevalent in the United States (US) and worldwide, including among children in need of a liver transplant. Unlike with heart and kidney failure, end-stage liver disease (ESLD) is unique in that no widely available medical technology can re-create the life-sustaining function of a failing liver. Therefore, delaying a life-saving liver transplant for weight loss, for example, is much harder, if not impossible for many pediatric patients, especially those with acute liver failure.

Validation of a Process for Shared Decision-Making in Pediatrics.

Objective: We sought to confirm, refute, or modify a 4-step process for implementing shared decision-making (SDM) in pediatrics that involves determining 1) if the decision includes >1 medically reasonable option; 2) if one option has a favorable medical benefit-burden ratio compared to other options; and 3) parents' preferences regarding the options; then 4) calibrating the SDM approach based on other relevant decision characteristics.

Methods: We videotaped a purposive sample of pediatric inpatient and outpatient encounters at a single US children's hospital. Clinicians from 7 clinical services (craniofacial, neonatology, oncology, pulmonary, pediatric intensive care, hospital medicine, and sports medicine) were eligible.

Parental Refusals of Blood Transfusions from COVID-19 Vaccinated Donors for Children Needing Cardiac Surgery.

There is a growing trend of refusal of blood transfusions from COVID-19 vaccinated donors. We highlight three cases where parents have refused blood transfusions from COVID-19 vaccinated donors on behalf of their children in the setting of congenital cardiac surgery. These families have also requested accommodations such as explicit identification of blood from COVID-19 vaccinated donors, directed donation from a COVID-19 unvaccinated family member, or use of a non-standard blood supplier.

Pediatric Shared Decision-Making for Simple and Complex Decisions: Findings From a Delphi Panel.

Objective: To develop recommendations for pediatric shared decision-making (SDM).

Methods: We conducted a Delphi method study from 2020 to 2021 with an international panel (n = 21) of clinicians, researchers, and parents with expertise in pediatric SDM. We conducted semistructured interviews to identify the key processes of pediatric SDM.

Family-Assisted Severity of Illness Monitoring for Hospitalized Children in Low-Resource Settings-A Two-Arm Interventional Feasibility Study.

Introduction: Pediatric mortality remains unacceptably high in many low-resource settings, with inpatient deaths often associated with delayed recognition of clinical deterioration. The Family-Assisted Severe Febrile Illness ThERapy (FASTER) tool has been developed for caregivers to assist in monitoring their hospitalized children and alert clinicians. This study evaluates feasibility of implementation by caregivers and clinicians.

Ethical Considerations in Ever-Expanding Utilization of ECLS: A Research Agenda.

Technological advancements and rapid expansion in the clinical use of extracorporeal life support (ECLS) across all age ranges in the last decade, including during the COVID-19 pandemic, has led to important ethical considerations. As a costly and resource intensive therapy, ECLS is used emergently under high stakes circumstances where there is often prognostic uncertainty and risk for serious complications. To develop a research agenda to further characterize and address these ethical dilemmas, a working group of specialists in ECLS, critical care, cardiothoracic surgery, palliative care, and bioethics convened at a single pediatric academic institution over the course of 18 months.

An ethical analysis of obesity as a contraindication of pediatric kidney transplant candidacy.

The inclusion of body mass index (BMI) as a criterion for determining kidney transplant candidacy in children raises clinical and ethical challenges. Childhood obesity is on the rise and common among children with kidney failure. In addition, obesity is reported as an independent risk factor for the development of CKD and kidney failure.

"I Didn't Realize How Hard It Was Going to Be Just Transitioning Back into Life": A Qualitative Exploration of Outcomes for Survivors of Pediatric Septic Shock.

Recovery following pediatric critical illness is multifaceted and complex. While most critically ill children survive, many experience morbidities in physical, emotional, cognitive, and social function. We aimed to deeply explore and describe the multidimensional impact of pediatric septic shock for affected children and their families at the granular level using exploratory qualitative methodology.

Health-related quality of life outcome measures for children surviving critical care: a scoping review.

Purpose: Health-related quality of life (HRQL) has been identified as one of the core outcomes most important to assess following pediatric critical care, yet there are no data on the use of HRQL in pediatric critical care research. We aimed to determine the HRQL instruments most commonly used to assess children surviving critical care and describe study methodology, patient populations, and instrument characteristics to identify areas of deficiency and guide investigators conducting HRQL research.

Methods: We queried PubMed, EMBASE, PsycINFO, Cumulative Index of Nursing and Allied Health Literature, and the Cochrane Registry for studies evaluating pediatric critical care survivors published 1970-2017.

Pediatric Death by Neurologic Criteria: The Ever-Changing Landscape and the Expanding Role of Palliative Care Professionals.

Pediatric palliative care providers are especially suited to support families and medical teams facing a potential diagnosis of brain death, or death by neurologic criteria (DNC), when a child suffers a devastating brain injury. To support pediatric palliative care providers' effectiveness in this role, this article elucidates the clinical determination of DNC and the evolution of the ethical and legal controversies surrounding DNC. Conceptual definitions of death used in the context of DNC have been and continue to be debated amongst academicians, and children's families often have their own concept of death.

A world away and here at home: a prioritisation framework for US international patient programmes.

Programmes serving international patients are increasingly common throughout the USA. These programmes aim to expand access to resources and clinical expertise not readily available in the requesting patients' home country. However, they exist within the US healthcare system where domestic healthcare needs are unmet for many children.

Can a Parent Refuse the Brain Death Examination?

The American Academy of Neurology believes that doctors have the right to do tests to evaluate whether a patient is brain dead even if the family does not consent. They argue that physicians have "both the moral authority and professional responsibility" to do such evaluations, just as they have the authority and responsibility to declare someone dead by circulatory criteria. Not everyone agrees.

"We Can Do Anything but We Can't Do Everything": Exploring the Perceived Impact of International Pediatric Programs on U.S. PICUs.

Every year, an increasing number of international patients seek medical care in the United States (U.S.), yet little is known about their impact.

ECLS for Legionella: All Ages Welcome in the ELSO Registry.

We describe the use of extracorporeal life support (ECLS) for Legionellosis in the pediatric and adult populations and report complications, morbidity, and mortality by conducting a retrospective review of patients from the Extracorporeal Life Support Organization registry, including two cases at our pediatric institution. A total of 194 patients with ECLS for Legionella pneumophila infection who received ECLS were included in the analysis. Overall survival was 71%.

Gaps in the Implementation of Shared Decision-making: Illustrative Cases.

Shared decision-making (SDM) has emerged as the preferred decision-making model in the clinician-patient relationship. Through collaboration, SDM helps to facilitate evidence-based medical decisions that are closely aligned with patient or surrogate preferences, values, and goals. How to implement SDM in clinical pediatric practice, however, remains elusive, in part because SDM in pediatrics is complicated by the involvement of parents as a special class of surrogate decision-maker.

Titrating Clinician Directiveness in Serious Pediatric Illness.

Shared decision-making in pediatrics is based on a trusting partnership between parents, clinicians, and sometimes patients, wherein all stakeholders explore values and weigh options. Within that framework, clinicians often have an obligation to provide guidance. We describe a range of ethically justifiable clinician directiveness that could be appropriate in helping families navigate serious pediatric illness.

When a Child Dies in the PICU Despite Ongoing Life Support.

Objectives: To examine the circumstance of death in the PICU in the setting of ongoing curative or life-prolonging goals.

Data Sources: Multidisciplinary author group, international expert opinion, and use of current literature.

Data Synthesis: We describe three common clinical scenarios when curative or life-prolonging goals of care are pursued despite a high likelihood of death.

Description and Preliminary Evaluation of a Curriculum for Teaching Conversational Skills to Children With High-Functioning Autism and Other Social Cognition Challenges.

Purpose: The purpose of this clinical focus article is to provide (a) a detailed description of a school-based intervention designed to teach children with high-functioning autism spectrum disorders (HF-ASDs) and other social cognition challenges both the how and the why of conversation and (b) a preliminary evaluation of program outcomes.

Method: This pilot study involved (a) qualitative and quantitative analysis of video footage of participants' conversational skills at baseline, during intervention, and postintervention; (b) interviews with participants' speech-language pathologist (third author) about individual participant progress; and (c) interviews with instructors responsible for implementing the curriculum regarding overall program effectiveness. Participants were four elementary-aged children with HF-ASDs and other social cognition challenges with deficits in expressive language and auditory processing and comprehension.

A Parent's Journey: Incorporating Principles of Palliative Care into Practice for Children with Chronic Neurologic Diseases.

Rather than in conflict or in competition with the curative model of care, pediatric palliative care is a complementary and transdisciplinary approach used to optimize medical care for children with complex medical conditions. It provides care to the whole child, including physical, mental, and spiritual dimensions, in addition to support for the family. Through the voice of a parent, the following case-based discussion demonstrates how the fundamentals of palliative care medicine, when instituted early in the course of disease, can assist parents and families with shared medical decision making, ultimately improving the quality of life for children with life-limiting illnesses.

Examining palliative care team involvement in automatic consultations for children on extracorporeal life support in the pediatric intensive care unit.

Background: Extracorporeal life support (ECLS) is an advanced form of life-sustaining therapy that creates stressful dilemmas for families. In May 2009, Seattle Children's Hospital (SCH) implemented a policy to involve the Pediatric Advanced Care Team (PACT) in all ECLS cases through automatic referral.

Objective: Our aim was to describe PACT involvement in the context of automatic consultations for ECLS patients and their family members.