• Jori F Bogetz, Justin Yu, Ellie Oslin, Krysta S Barton, Joyce P Yi-Frazier, Robert Scott Watson, and Abby R Rosenberg.
• Division of Bioethics and Palliative Care, Department of Pediatrics (J.B.), University of Washington School of Medicine; Treuman Katz Center for Bioethics, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, Washington, USA. Electronic address: jori.bogetz@seattlechildrens.org.
• J Pain Symptom Manage. 2023 Dec 1; 66 (6): 647655647-655.

ContextChildren with severe neurological impairment (SNI) make up nearly 50% of pediatric intensive care unit (PICU) admissions, yet little is known about their family caregiver experiences.ObjectiveTo examine how parents and family caregivers of children with SNI navigate stress during PICU admissions.MethodsThis qualitative single-center study used content and thematic networks analysis to evaluate data from 1:1 semistructured interviews conducted around the time of PICU discharge with parents and family caregivers of children with SNI to examine ways they navigate stress. Proportions of participants reporting each theme and subtheme were calculated.ResultsFifteen parents/family caregivers of 15 children with SNI participated. Children were a median of 8 years old (range 1-21 years) and the majority had congenital/chromosomal conditions leading to their neurologic condition (80%, n = 12). 20% of participants were fathers (n = 3) and 45% (n = 7) reported identifying as having a minority racial background. Themes included 1) self-activation, and 2) letting go and the majority (80%, n = 12) of parents reported using both self-activation and letting go strategies. Within each of these themes, 5 subthemes illustrated ways parents navigate stress. The most reported subthemes were advocating and showing up (53%, n = 8) and being supported by compassionate clinicians (67%, n = 10). Themes/subthemes were used to create recommended language to guide clinicians in supporting parents.ConclusionParents and family caregivers of children with SNI employ various ways to navigate stress in the PICU. Themes from this study can be used to develop interventions that meet the psychosocial needs of parents and family caregivers of children with SNI during highly stressful times.Copyright © 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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