Search

Objectives: To identify self-reported meaningful decisions made by parents in the PICU and to determine patient and parent characteristics associated with the development of parental decision regret, a measurable, self-reported outcome associated with psychologic morbidity., Design: Secondary analysis of the Navigate randomized comparative trial (NCT02333396)., Setting: Two tertiary, academic PICUs., Patients: Spanish- or English-speaking parents of PICU patients aged less than 18 years who were expected to remain in the PICU for greater than 24 hours from time of enrollment or who had a risk of mortality greater than 4% based on Pediatric Index of Mortality 2 score., Interventions: None., Measurements and Main Results: Between April 2015 and March 2017, 233 parents of 209 patients completed a survey 3-5 weeks post-PICU discharge which included the Decision Regret Scale (DRS), a 5-item, 5-point Likert scale tool scored from 0 (no regret) to 100 (maximum regret). Two hundred nine patient/parent dyads were analyzed. The decisions parents reported as most important were categorized as: procedure, respiratory support, medical management, parent-staff interactions and communication, symptom management, fluid/electrolytes/nutrition, and no decision. Fifty-one percent of parents had some decision regret (DRS > 0) with 19% scoring in the moderate-severe range (DRS 26-100). The mean DRS score was 12.7 ( sd 18.1). Multivariable analysis showed that parental Hispanic ethnicity was associated with greater odds ratio (OR 3.12 [95% CI, 1.36-7.13]; p = 0.007) of mild regret. Being parents of a patient with an increased PICU length of stay (LOS) or underlying respiratory disease was associated with greater odds of moderate-severe regret (OR 1.03 [95% CI, 1.009-1.049]; p = 0.004 and OR 2.91 [95% CI, 1.22-6.94]; p = 0.02, respectively)., Conclusions: Decision regret was experienced by half of PICU parents in the 2015-2017 Navigate study. The characteristics associated with decision regret (parental ethnicity, PICU LOS, and respiratory disease) are easily identifiable. Further study is needed to understand what contributes to regret in this population and what interventions could provide support and minimize the development of regret., Competing Interests: Drs. Michelson, Frader, Sorce, Clayman, and White’s institutions received from Patient-Centered Outcomes Research Institute. Dr. Sorce disclosed she is a member of the Executive Committee Board of the Society of Critical Care Medicine. Dr. White was supported by the National Institute of Health grant K24HL148314. Dr. White reports personal fees from American Thoracic Society and personal fees from UpToDate. Dr. Frader received funding from Direct Relief/Takeda Pharmaceuticals and Premier Research/Dicerna Pharmaceutical; he disclosed government work. Dr. Michelson’s institution received funding from the Greenwall Foundation and the National Institutes of Health; he received funding from the Friends of Prentice Northwestern Alliance for Research in Chicagoland Communities. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2024 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.)

Objectives: To describe challenges experienced by parents of children hospitalized in the PICU during PICU admission as reported by family navigators., Design: A preplanned secondary analysis of open-response data coded via inductive qualitative approach from the Navigate randomized controlled trial (RCT) dataset (ID NCT02333396)., Setting: Two university-affiliated PICUs in the Midwestern United States as part of an RCT., Patients: Two hundred twenty-four parents of 190 PICU patients., Interventions: In 2015-2017, trained family navigators assessed and addressed parent needs, offered weekly family meetings, and provided post-PICU discharge parent check-ins as part of a study investigating the effectiveness of a communication support intervention ("PICU Supports")., Measurements and Main Results: We analyzed qualitative data recorded by family navigators weekly across 338 encounters. Navigators described families' "biggest challenge," "communication challenges," and ways the team could better support the family. We used an inductive qualitative coding approach and a modified member-checking exercise. The most common difficulties included home life , hospitalization , and diagnosis distress (45.2%, 29.0%, and 17.2% of families, respectively). Navigators often identified that parents had co-occurring challenges. Communication was identified as a "biggest challenge" for 8% of families. Communication challenges included lack of information, team communication , and communication quality (7.0%, 4.8%, and 4.8% of families, respectively). Suggestions for improving care included better medical communication, listening, rapport, and resources., Conclusions: This study describes families' experiences and challenges assessed throughout the PICU stay. Family navigators reported families frequently experience stressors both internal and external to the hospital environment, and communication challenges between families and providers may be additional sources of distress. Further research should develop and assess interventions aimed at improving provider-family communication and reducing stressors outside the hospitalization itself, such as home life difficulties., Competing Interests: Drs. Tager and Balistreri were supported by the UWM Cialdini Fellowship. The project described was supported by the National Center for Advancing Translational Sciences, National Institutes of Health, Award Number UL1TR001436, and by the generosity of Froedtert Hospital. The content is solely the responsibility of the author(s) and does not necessarily represent the official views of the NIH. Drs. Charleston and Michelson’s institutions received funding from the Patient-Centered Outcomes Research Institute (PCORI). Dr. Charleston received support for article research from the PCORI. Dr. White received support for article research from the National Institutes of Health. Dr. Source disclosed she is on the Executive Board for the Society of Critical Care Medicine. Dr. Michelson’s institution received funding from the NIH, the Greenwall Foundation, and Friends of Prentice; They received funding from Northwestern Alliance for Research in the Chicagoland Communities; They disclosed they are a board member of Normal Moments; They disclosed they are the co-founder of Missing Pieces of the HAP Foundation. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2023 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.)

Background: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes., Objective: To test the feasibility of studying and implementing a PICU communication intervention called PICU Supports, and to assess families' and health care teams' perceptions of the intervention., Methods: This study involved patients requiring more than 24 hours of PICU care. An interventionist trained in PICU-focused health care navigation, a "navigator," met with parents and the health care team to discuss communication, decision-making, emotional, informational, and discharge or end-of-life care needs; offered weekly family meetings; and checked in with parents after PICU discharge. The feasibility of implementing the intervention was assessed by tracking navigator activities. Health care team and family perceptions were assessed using surveys, interviews, and focus groups., Results: Of 53 families approached about the study, 35 (66%) agreed to participate. The navigator met with parents on 71% and the health care team on 85% of possible weekdays, and completed 86% of the postdischarge check-ins. Family meetings were offered to 95% of eligible patients. The intervention was rated as helpful by 97% of parents, and comments during interviews were positive., Conclusions: The PICU Supports intervention is feasible to implement and study and is viewed favorably by parents., (© 2020 American Association of Critical-Care Nurses.)