Background: Data about pediatric intensive care unit (PICU) family conferences (FCs) are needed to enhance our understanding of the role of FCs in patient care and build a foundation for future research on PICU communication and decision making. Objective: The study's objective was to describe the use and content of PICU FCs. Design: The study design was a prospective chart review comparing patients who had conferences with those who did not, and a sub-analysis of patients with chronic care conditions (CCCs). Setting/subjects: The study setting was an academic PICU from January 2011 through June 2011. Measurements: Medical events under consideration were placement of tracheostomy or gastrostomy tube; initiation of chronic ventilation; palliative care involvement; use of extracorporeal membrane oxygenation, continuous renal replacement, or cardiopulmonary resuscitation; care limitation orders; death; length of stay; and discharge to a new environment. Results: From 661 admissions, we identified 74 conferences involving 49 patients. Sixty-four conferences (86%) were held about 40 patients with CCCs. Having a conference was associated with (p<0.05): length of PICU admission; palliative care involvement; initiation of chronic ventilation; extracorporeal membrane oxygenation; cardiopulmonary resuscitation; death; discharge to a new environment; and care limitation orders. Twenty-nine percent of patients who had a new tracheostomy or gastrostomy tube placed had a conference. We identified two categories of discussion topics: information exchange and future management. Conclusions: Most identified FCs involved complex patients or patients who faced decisions affecting the child's quality of life or dying. For many patients who faced life changing decisions we did not identify a FC. Further research is needed to understand how to best utilize FCs and less formal conversations.

While there is a robust literature describing family conferences (FCs) in adult intensive care units (ICUs), less information exists about FCs in pediatric ICUs (PICUs). We conducted a pilot study to describe the focus of discussion, communication patterns of health care team members (HTMs) and parents, and parents’ perspectives about clinician communication during PICU FCs. We analyzed data from 22 video- or audiorecorded PICU FCs and post-FC questionnaire responses from 27 parents involved in 18 FCs. We used the Roter Interaction Analysis System (RIAS) to describe FC dialogue content. Our questionnaire included the validated Communication Assessment Tool (CAT). FCs were focused on care planning (n = 5), decision making (n = 6), and updates (n = 11). Most speech came from HTMs (mean 85%; range, 65–94%). Most HTM utterances involved medical information. Most parent utterances involved asking for explanations. The mean overall CAT score was 4.62 (using a 1–5 scale where 5 represents excellent and 1 poor) with a mean of 73.02% “excellent” responses. Update and care-planning FCs had lower CAT scores compared to decision-making FCs. The lowest scoring CAT items were “Involved me in decisions as much as I wanted,” “Talked in terms I could understand,” and “Gave me as much information as I wanted.” These findings suggest that while health care providers spend most of their time during FCs relaying medical information, more attention should be directed at providing information in an understandable manner. More work is needed to improve communication when decision making is not the main focus of the FC.

Objectives: Communication breakdowns in PICUs contribute to inadequate parent support and poor post-PICU parent outcomes. No interventions supporting communication have demonstrated improvements in parental satisfaction or psychologic morbidity. We compared parent-reported outcomes from parents receiving a navigator-based parent support intervention (PICU Supports) with those from parents receiving an informational brochure. Design: Patient-level, randomized trial. Setting: Two university-based, tertiary-care children’s hospital PICUs. Participants: Parents of patients requiring more than 24 hours in the PICU. Interventions: PICU Supports included adding a trained navigator to the patient’s healthcare team. Trained navigators met with parents and team members to assess and address communication, decision-making, emotional, informational, and discharge or end-of-life care needs; offered weekly family meetings; and did a post-PICU discharge parent check-in. The comparator arm received an informational brochure providing information about PICU procedures, terms, and healthcare providers. Measurements and Main Results: The primary outcome was percentage of “excellent” responses to the Pediatric Family Satisfaction in the ICU 24 decision-making domain obtained 3–5 weeks following PICU discharge. Secondary outcomes included parental psychologic and physical morbidity and perceptions of team communication. We enrolled 382 families: 190 received PICU Supports, and 192 received the brochure. Fifty-seven percent (216/382) completed the 3–5 weeks post-PICU discharge survey. The mean percentage of excellent responses to the Pediatric Family Satisfaction in the ICU 24 decision-making items was 60.4% for PICU Supports versus 56.1% for the brochure (estimate, 3.57; se, 4.53; 95% CI, –5.77 to 12.90; p = 0.44). Differences in secondary outcomes were not statistically significant. Most parents (91.1%; 113/124) described PICU Supports as “extremely” or “somewhat” helpful. Conclusions: Parents who received PICU Supports rated the intervention positively. Differences in decision-making satisfaction scores between those receiving PICU Supports and a brochure were not statistically significant. Interventions like PICU Supports should be evaluated in larger studies employing enhanced recruitment and retention of subjects.

Stakeholder-developed interventions are needed to support pediatric intensive care unit (PICU) communication and decision-making. Few publications delineate methods and outcomes of stakeholder engagement in research. We describe the process and impact of stakeholder engagement on developing a PICU communication and decision-making support intervention. We also describe the resultant intervention. Stakeholders included parents of PICU patients, healthcare team members (HTMs), and research experts. Through a year-long iterative process, we involved 96 stakeholders in 25 meetings and 26 focus groups or interviews. Stakeholders adapted an adult navigator model by identifying core intervention elements and then determining how to operationalize those core elements in pediatrics. The stakeholder input led to PICU-specific refinements, such as supporting transitions after PICU discharge and including ancillary tools. The resultant intervention includes navigator involvement with parents and HTMs and navigator-guided use of ancillary tools. Subsequent research will test the feasibility and efficacy of our intervention.