Perspectives on non-emergent neonatal intensive care unit to pediatric intensive care unit care transfers in the United States.

Background: There is a substantial population of long-stay patients who non-emergently transfer directly from the neonatal intensive care unit (NICU) to the pediatric intensive care unit (PICU) without an interim discharge home. These infants are often medically complex and have higher mortality relative to NICU or PICU-only admissions. Given an absence of data surrounding practice patterns for non-emergent NICU to PICU transfers, we hypothesized that we would encounter a broad spectrum of current practices and a high proportion of dissatisfaction with current processes.

Where do families turn? Ethical dilemmas in the care of chronically critically Ill children.

Advancements in early diagnosis and novel treatments for children with complex and chronic needs have improved their chances of survival. But many survive with complex medical needs and ongoing medical management in the setting of prognostic uncertainty. Their medical care relies more and more on preference-sensitive decisions, requiring medical team and family engagement in ethically challenging situations.

Palliative Care for Pediatric Urology.

Palliative care in the field of urology has largely been limited to adult oncologic conditions. Although there is a plethora of established literature suggesting the advantageous impact of palliative care, there is limited integration of palliative care in adult urology. This underutilization is further exacerbated in pediatric urology, and palliative care in pediatric urology remains an underexplored area despite the prevalence of several life-limiting conditions in this patient population.

Continuous Neuromuscular Blockade for Bronchopulmonary Dysplasia.

Objective:  Bronchopulmonary dysplasia (BPD) is the most common late morbidity for premature infants. Continuous neuromuscular blockade (CNMB) is suggested for the most unstable phase of BPD, despite no outcome data. We explored the association between duration of CNMB for severe BPD and mortality.

Building clinician-parent partnerships to improve care for chronically critically Ill children: A pilot project.

Objective: Multicenter pilot to assess feasibility, acceptability, and educational value of videos for families and clinicians regarding unique inpatient challenges of pediatric chronic critical illness.

Methods: Videos were developed for 3 hospitalization timepoints: 1) chronic critical illness diagnosis, 2) transfers, 3) discharge. Parents of hospitalized children, and interdisciplinary clinicians, were recruited to watch videos and complete surveys.

Establishing Goals of Care in Serious and Complex Pediatric Illness.

An increasing number of children are living for months and years with serious/complex illness characterized by long-term prognostic uncertainty, intensive interactions with medical systems, functional limitations, and often home medical technologies that shape the child's and family's quality of life. These families face many medical decision points that require intentional and iterative discussions about goals of care. Threats to cohesive goals of care include prognostic uncertainty, diffusion of medical responsibility, individual family context, and blended goals of care.

Parent Perspectives on the Child Experience of Pediatric Home Ventilation via Tracheostomy.

Background And Objective: Parents facing the decision of whether to initiate pediatric mechanical ventilation via tracheostomy ("home ventilation") report wanting information about what to expect for life at home for their child. The study objective is to explore parent descriptions of the child experience of home ventilation to increase awareness for clinicians in the inpatient setting caring for these children.

Methods: Semistructured interviews were conducted using purposive sampling of parents with children who initiated home ventilation within the previous 5 years from 3 geographically diverse academic medical centers.

Life on the Frontlines: Caregiver Experience of Pediatric Cerebrospinal Shunt Malfunction.

Background: We aimed to characterize the caregiver experience in the detection and evaluation of pediatric cerebrospinal shunt malfunction.

Methods: In this descriptive qualitative study, we recruited English-speaking caregivers of children aged five years or less in collaboration with a stakeholder organization. Semistructured interviews were completed; content targeted the caregiver experience of shunt malfunction.

Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation.

Objective: To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation.

Methods: Parents and clinicians of children facing home ventilation decisions were enrolled at 3 centers using a pre/post cohort design. Family interventions included: 1) a website describing the experiences of families who previously chose for and against home ventilation 2) a Question Prompt List (QPL); 3) in-depth interviews exploring home life and values.

Family-Reflections.com: Creating a parent-to-parent web-based tool regarding pediatric home ventilation.

Background: The decision to initiate pediatric mechanical ventilation via tracheostomy ("home ventilation") is complex and parents often desire information from other parents who have faced this decision. However, parent-to-parent communication is challenging as it is difficult to connect new families to experienced families in ways that optimize informed, balanced decision-making.

Objective: Create a parent-to-parent web-based tool to support decision-making about pediatric home ventilation.

Palliative care for NICU survivors with chronic critical illness.

The sickest of NICU survivors develop chronic critical illness (CCI). Most infants with CCI will leave the NICU using chronic medical technology and will experience repeated rehospitalizations. The unique issues for these NICU graduates- escalating chronic medical technologies, fractured post-NICU healthcare, gaps in home health services, and family strain-are common and predictable.

Symptoms of Cerebrospinal Shunt Malfunction in Young Children: A National Caregiver Survey.

This study aimed to describe shunt malfunction symptoms in children ≤5 years old. In a national survey of 228 caregivers, vomiting (23.1%), irritability (20.

"What Would Give Her the Best Life?": Understanding Why Families Decline Pediatric Home Ventilation.

Families who must decide about pediatric home ventilation rely on the clinicians who counsel them for guidance. Most studies about pediatric home ventilation decisions focus on families who opt for this intervention, leaving much unknown about the families who decline. To describe the rationales of families who decline home ventilation.

Observation of Child Experience During Discontinuing of Medically Provided Nutrition and Hydration.

Context: Ethical and professional guidelines support withholding/discontinuing medically provided nutrition and hydration (MPNH) for children in specific scenarios yet literature shows many providers do not support this practice. One reason clinicians continue MPNH is worry about child suffering.

Objectives: This study was designed to assess clinician observations of infant/child experience following withholding/discontinuing MPNH.

Family challenges in personal transportation of children with medical complexity.

Purpose: This study aimed to explore the family experience and associated challenges of transporting children with medical complexity (CMC) in personal vehicles.

Methods: Parents/guardians of CMC in Maryland were recruited to participate in an audiotaped, semi-structured interview. Conventional content analysis was applied to transcripts.

Costs of Neonatal Medical Complexity: Impact on New Parent Stress and Decision-Making.

Objective: Parents of children with medical complexity experience substantial financial burdens. It is unclear how neonatal intensive care unit (NICU) clinicians prepare new parents of medically complex infants for this reality. This study explored new parent awareness of health care costs, desire to discuss costs with clinicians, and impact of costs on parents' medical decision-making.

Guidance for Pediatric End-of-Life Care.

The final hours, days, and weeks in the life of a child or adolescent with serious illness are stressful for families, pediatricians, and other pediatric caregivers. This clinical report reviews essential elements of pediatric care for these patients and their families, establishing end-of-life care goals, anticipatory counseling about the dying process (expected signs or symptoms, code status, desired location of death), and engagement with palliative and hospice resources. This report also outlines postmortem tasks for the pediatric team, including staff debriefing and bereavement.

Video tools in pediatric goals of care communication: A systematic review.

•Goals of Care resources are primarily in written format and for adult patients.•Video tools can support families of pediatric patients facing prognostic uncertainty.•Videos represent an effective but underutilized Goals of Care communication tool.

Home mechanical ventilation for children with severe neurological impairment: Parents' perspectives on clinician counselling.

Aim: To retrospectively explore the perspectives of parents of children with severe neurological impairment (SNI), such as those with severe cerebral palsy, epilepsy syndromes, and structural brain differences, on clinician counseling regarding home mechanical ventilation (HMV).

Method: Inductive thematic analysis was performed on data from telephone interviews with parents who chose for and against HMV for their child with SNI at three academic children's hospitals across the USA.

Results: Twenty-six parents/legal guardians of 24 children were interviewed.

Top Ten Tips Palliative Care Clinicians Should Know About Their Work's Intersection with Clinical Ethics.

Palliative care (PC) subspecialists and clinical ethics consultants often engage in parallel work, as both function primarily as interprofessional consultancy services called upon in complex clinical scenarios and challenging circumstances. Both practices utilize active listening, goals-based communication, conflict mediation or mitigation, and values explorations as care modalities. In this set of tips created by an interprofessional team of ethicists, intensivists, a surgeon, an attorney, and pediatric and adult PC nurses and physicians, we aim to describe some paradigmatic clinical challenges for which partnership may improve collaborative, comprehensive care.