Continuity Strategies for Long-Stay PICU Patients: Consensus Statements From the Lucile Packard Foundation PICU Continuity Panel.

Objectives: To develop consensus statements on continuity strategies using primary intensivists, primary nurses, and recurring multidisciplinary team meetings for long-stay patients (LSPs) in PICUs.

Participants: The multidisciplinary Lucile Packard Foundation PICU Continuity Panel comprising parents of children who had prolonged PICU stays and experts in several specialties/professions that care for children with medical complexity in and out of PICUs.

Design/methods: We used modified RAND Delphi methodology, with a comprehensive literature review, Delphi surveys, and a conference, to reach consensus.

Primary Intensivists and Nurses for Long-Stay Patients: A Survey of Practices and Perceptions at Academic PICUs.

Objectives: To determine the prevalence of the utilization of primary intensivists and primary nurses for long-stay patients in large, academic PICU and ascertain how these practices are operationalized and perceived.

Design: A cross-sectional survey.

Setting: U.

Bioethics for Neonatal Cardiac Care.

Background: Clinicians caring for neonates with congenital heart disease encounter challenges with ethical implications in daily practice and must have some basic fluency in ethical principles and practical applications.

Methods: Good ethical practice begins with a thorough understanding of the details and narrative of each individual case, examination via classic principles of bioethics, and further framing of that translation into practice.

Results: We explore some of these issues and expand awareness through the lens of a case presentation beginning with fetal considerations through end-of-life discussions.

Prognostic and Goals-of-Care Communication in the PICU: A Systematic Review.

Objective: Admission to the PICU may result in substantial short- and long-term morbidity for survivors and their families. Engaging caregivers in discussion of prognosis is challenging for PICU clinicians. We sought to summarize the literature on prognostic, goals-of-care conversations (PGOCCs) in the PICU in order to establish current evidence-based practice, highlight knowledge gaps, and identify future directions.

Group Concept Mapping Conceptualizes High-Quality Care for Long-Stay Pediatric Intensive Care Unit Patients and Families.

Objective: To describe and conceptualize high-quality care for long-stay pediatric intensive care unit (PICU) patients using group concept mapping (GCM).

Study Design: We convened an expert panel to elucidate domains of high-quality care for this growing patient population for which transitory care models fail to meet their needs. Thirty-one healthcare professionals and 7 parents of patients with previous prolonged PICU hospitalizations comprised a diverse, interprofessional multidisciplinary panel.

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.

Trust in Physicians, Anxiety and Depression, and Decision-Making Preferences among Parents of Children with Serious Illness.

To assess parental decision-making preferences when caring for a child with serious illness and to evaluate for an association between preferences and parental trust in physicians, and potential modification of this association by parental anxiety or depression. We analyzed cross-sectional data from 200 parents of 158 children in the United States who had life-threatening illnesses and whose attending physicians thought that the parents would have to make major medical decision in the next 12 to 24 months. Parents completed measures of decision-making preferences, trust in physicians, anxiety, and depression.

The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review.

The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens.

Supporting Family Decision-making for a Child Who Is Seriously Ill: Creating Synchrony and Connection.

The families of children with chronic or serious illness are sometimes faced with difficult decisions never previously imagined. We offer a stepwise approach in building a human connection with these families to support them through the decision-making process. We encourage the clinician to stop talking and to actively listen and find common ground.

Communication training for inter-specialty clinicians.

Background: Inter-specialty clinicians often co-lead family conferences for hospitalised patients. Families frequently report receiving different messages from different clinicians. We developed a communication training workshop that crosses disciplines and co-trains clinicians in one setting to create a culture of delivering a unified message.

Parental Sources of Support and Guidance When Making Difficult Decisions in the Pediatric Intensive Care Unit.

Objective: To assess sources of support and guidance on which parents rely when making difficult decisions in the pediatric intensive care unit and to evaluate associations of sources of support and guidance to anxiety, depression, and positive and negative affect.

Study Design: This was a prospective cohort study of 86 English-speaking parents of 75 children in the pediatric intensive care unit at The Children's Hospital of Philadelphia who were hospitalized greater than 72 hours. Parents completed standardized instruments and a novel sources of support and guidance assessment.

Parental decision-making preferences in the pediatric intensive care unit.

Objective: To assess parental decision-making preferences in the high-stress environment of the pediatric intensive care unit and test whether preferences vary with demographics, complex chronic conditions, prior admissions to the pediatric intensive care unit, and parental positive and negative emotional affect.

Design: Institutional Review Board-approved prospective cohort study conducted between December 2009 and April 2010.

Setting: Pediatric intensive care unit at The Children's Hospital of Philadelphia.