Due to power imbalances, families' values and preferences may not be integrated in decisions or families may be excluded from discussions about goals of care. We suggest that a systematic approach to identify parental preferences and needs for decisional roles and information may reduce variability in parental involvement.

Background Family-centered care is a proposed way of supporting family involvement with a child’s care and decreasing distress associated with a child’s critical illness by improving communication, helping manage stress and coping, and decreasing conflicts. Nurses are critical to successful implementation of family-centered care. Objectives To describe nurses’ perceptions of the benefits and challenges of providing family-centered care in pediatric intensive care units. Methods Semistructured interviews of 10 bedside and charge nurses in pediatric, cardiac, and neonatal intensive care units. Questions were related to 4 domains: the intensive care unit environment and its relationship to the structure and delivery of critical care, stressors for nurses and families, communication challenges and strategies, and involvement of families in care and decision-making. Results The main thematic finding was the nurses’ descriptions of a “balancing act” to provide quality family-centered care. The balancing act was characterized by the interaction between 2 types of changes: (1) intensive care unit policies related to visitation hours and family presence at the bedside and (2) physical transformations in the intensive care unit from shared open space to individual private rooms. Conclusions All of the nurses viewed the transition to family-centered care as having benefits for families. They also described how changes had created new challenges for the delivery of nursing care in intensive care units, particularly regarding mentorship and the safety of patients and staff.

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. Methods: We retrospectively examined chart notes for 59 consecutive cases and used content analysis to identify themes and patterns. Results: The degree of PACT involvement was related to three domains: prognostic uncertainty, medical complexity, and need for coordination of care with other services. Low PACT involvement was associated with cases with little prognostic uncertainty, little medical complexity, and minimal need for coordination of care. Medium PACT involvement was associated with two categories of cases: 1) those with a degree of medical complexity but little prognostic uncertainty; and 2) those that had a degree of prognostic uncertainty but little medical complexity. High PACT involvement had the greatest medical complexity and prognostic uncertainty, and also had those cases with a high need for coordination of care. Conclusions: We describe a framework for understanding the potential involvement of palliative care among patients receiving ECLS that explains how PACT organizes its efforts toward patients and families with the highest degree of need. Future studies should examine whether this approach is associated with improved patient and family outcomes.

Palliative care was most beneficial for families at risk of experiencing communication problems that resulted from organizational factors, including those with long lengths of stay and medical complexity. The ability of palliative care consultants to bridge communication was limited by some of these same organizational factors. Physicians valued the involvement of palliative care consultants when they improved efficiency and promoted harmony. Given the increasing number of children with complex chronic conditions, it is important to support the capacity of ICU clinical teams to provide primary palliative care. We suggest comprehensive system changes and critical care physician training to include topics related to chronic illness and disability.

Background To describe the study methods, baseline characteristics and burden of study procedures of an intervention designed to reduce family stress symptoms through early support from the palliative care team. Length of stay of ≥8 days was the trigger for early palliative care involvement. Methods Cluster-randomized trial with children as the unit of randomization. Up to 3 family members per child were recruited. Family stress symptoms were recorded at baseline, discharge from the ICU, and 3 months post-enrollment. Questionnaire burden was assessed on a 1–10 point scale at each time point and open-ended comments were analyzed to describe the participants’ experience in the study. Results 380 family members of 220 children (control=115 children and 204 family members; intervention=105 children and 176 family members) were recruited, which represented 50% of all eligible families. Most family participants were parents (86% control; 92% intervention) and female (66% both groups). Retention rates were high through the 3-month follow-up: 93% and 90% for the control and intervention groups respectively. Questionnaire burden was very low: mean (sd) scores were 1.1 (1.6), 0.7 (1.5), and 0.9 (1.6) for the baseline, discharge and follow-up questionnaires, respectively. Comments suggest that participation was beneficial by promoting reflection and self-awareness about stress, coping and resilience, and feeling cared for because the intervention and questionnaires focused on their own well-being. Conclusions The participants’ comments regarding the focus on them as the point of intervention reflects the value of conducting research with family members of seriously ill children during ICU stays.

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. Using an iterative consensus process, research questions were selected based on: (1) frequency, (2) uniqueness to ECLS, (3) urgency, (4) feasibility to study, and (5) potential to improve patient care. Questions were categorized into broad domains of societal decision-making, bedside decision-making, patient and family communication, medical team dynamics, and research design and implementation. A deeper exploration of these ethical dilemmas through formalized research and deliberation may improve equitable access and quality of ECLS-related medical care.