Challenges of Families of Patients Hospitalized in the PICU: A Preplanned Secondary Analysis From the Navigate Dataset.

To describe challenges experienced by parents of children hospitalized in the PICU during PICU admission as reported by family navigators. A preplanned secondary analysis of open-response data coded via inductive qualitative approach from the Navigate randomized controlled trial (RCT) dataset (ID NCT02333396). Two university-affiliated PICUs in the Midwestern United States as part of an RCT. Two hundred twenty-four parents of 190 PICU patients. 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"). 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. 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.

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Copyright © 2023 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.

Déclaration de conflit d'intérêts

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.