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J Pediatr Intensive Care
DOI: 10.1055/s-0041-1740450
Original Article

Parents' Experiences Caring for a Child after a Critical Illness: A Qualitative Study

Lenora M. Olson 
1   Department of Pediatrics, Division of Critical Care, University of Utah, Salt Lake City, Utah, United States
,
Grace N. Perry
2   Qualitative Research Core, Division of Epidemiology, University of Utah School of Medicine, Salt Lake City, Utah, United States
,
Serena Yang
2   Qualitative Research Core, Division of Epidemiology, University of Utah School of Medicine, Salt Lake City, Utah, United States
,
Patrick O'Roke Galyean
2   Qualitative Research Core, Division of Epidemiology, University of Utah School of Medicine, Salt Lake City, Utah, United States
,
Susan L. Zickmund
3   Informatics, Decision-Enhancement, and Analytic Sciences Center of Innovation, VA Salt Lake City Health Care System, Salt Lake City, Utah, United States
,
Samuel Sorenson
1   Department of Pediatrics, Division of Critical Care, University of Utah, Salt Lake City, Utah, United States
,
Neethi P. Pinto
4   Department of Anesthesiology and Critical Care Medicine, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States
,
Aline B. Maddux
5   Department of Pediatrics, Critical Care Medicine, University of Colorado School of Medicine, Children's Hospital Colorado, Aurora, Colorado, United States
,
R Scott Watson
6   Department of Pediatrics, Pediatric Critical Care Medicine, University of Washington School of Medicine, Seattle, Washington, United States
7   Center for Child Health, Behavior and Development, Seattle Children's Research Institute, Seattle, Washington, United States
,
Ericka L. Fink
8   Division of Pediatric Critical Care Medicine, UPMC Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania, United States
› Author Affiliations Funding The research reported in this article was supported, in part, by the following cooperative agreements from the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN), National Institutes of Health, Department of Health and Human Services (grant nos.: UG1HD050096, UG1HD049981, UG1HD049983, UG1HD063108, UG1HD083171, UG1HD083170, UG1HD083166, and U01HD049934).
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Abstract

Objectives This article described parents' experience and identifies outcomes important to parents following their child's critical illness.

Methods Semistructured interviews with 22 female and 4 male parents representing 26 critically ill children with predominately neurologic and respiratory diagnoses. Most children were younger than 5 years at discharge with a median (interquartile range) of 2 (2.0–3.0) years from discharge to interview.

Results Many children returned home with life-altering physical and cognitive disabilities requiring months to years of rehabilitation. Parents remembered feeling unprepared and facing an intense, chaotic time when the child first returned home. They described how they suddenly had to center their daily activities around the child's needs amidst competing needs of siblings and partners, and in some cases, the medicalization of the home. They recounted negotiating adjustments almost daily with insurance agencies, medical doctors and therapists, employers, the child, and other family members to keep the family functioning. In the long term, families developed a new norm, choosing to focus on what the child could still do rather than what they could not. Even if the child returned to baseline, parents remembered the adjustments made to keep the child alive and the family functioning.

Conclusion Heightened awareness of family experiences after pediatric critical illness will allow health care providers to improve family preparedness for the transition from hospital to home.

Keywords

pediatrics - qualitative - critical care - recovery - transitions of care

Note

This work was partially presented in an oral abstract at the 10th Congress of the World Federation of Pediatric Intensive and Critical Care Societies, Mexico City, Mexico, June 2020 (meeting postponed and virtually rescheduled to December 2020).


Supplementary Material



Publication History

Received: 14 July 2021

Accepted: 07 November 2021

Article published online:
08 December 2021

© 2021. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

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