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J Pediatr Intensive Care 2018; 07(04): 173-181
DOI: 10.1055/s-0038-1637005
Original Article
Georg Thieme Verlag KG Stuttgart · New York

Long-term Sequelae of Pediatric Neurocritical Care: The Parent Perspective

Cydni N. Williams
1   Division of Pediatric Critical Care, Department of Pediatrics, Oregon Health and Science University, Portland, Oregon, United States
,
Carl Eriksson
1   Division of Pediatric Critical Care, Department of Pediatrics, Oregon Health and Science University, Portland, Oregon, United States
,
Juan Piantino
2   Division of Pediatric Neurology, Department of Pediatrics, Oregon Health and Science University, Portland, Oregon, United States
,
Trevor Hall
3   Division of Pediatric Psychology, Department of Pediatrics, Oregon Health and Science University, Portland, Oregon, United States
,
Danielle Moyer
3   Division of Pediatric Psychology, Department of Pediatrics, Oregon Health and Science University, Portland, Oregon, United States
,
Aileen Kirby
1   Division of Pediatric Critical Care, Department of Pediatrics, Oregon Health and Science University, Portland, Oregon, United States
,
Cindy McEvoy
4   Division of Neonatology, Department of Pediatrics, Oregon Health and Science University, Portland, Oregon, United States
› Author Affiliations Funding Dr. Williams is supported by the Agency for Healthcare Research and Quality (grant number K12HS022981). The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency for Healthcare Research and Quality. Dr. Williams also serves on the Society of Critical Care Medicine's THRIVE task force and received a grant through the THRIVE peer support initiative awarded after completion of this study and submission of the manuscript. Dr. Piantino is supported by the National Heart, Lung and Blood Institute (grant number K12HL133115). Dr. McEvoy is supported by the National Heart Lung Blood Institute, R01 HL105447 with co-funding from the Office of Dietary Supplement R01H L129060 and UG3OD023288.
Further Information

Publication History

13 November 2017

07 February 2018

Publication Date:
09 March 2018 (online)

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Abstract

Critical neurologic disease and injury affect thousands of children annually with survivors suffering high rates of chronic morbidities related directly to the illness and to critical care hospitalization. Postintensive care syndrome (PICS) in patients and families encompasses a variety of morbidities including physical, cognitive, emotional, and psychological impairments following critical care. We conducted a focus group study with parents of children surviving pediatric neurocritical care (PNCC) for traumatic brain injury, stroke, meningitis, or encephalitis to determine outcomes important to patients and families, identify barriers to care, and identify potential interventions to improve outcomes. Sixteen parents participated in four groups across Oregon. Three global themes were identified: (1) PNCC is an intense emotional experience for the whole family; (2) PNCC survivorship is a chronic illness; and (3) PNCC has a significant psychological and social impact. Survivors and their families suffer physical, emotional, psychological, cognitive, and social impairments for many years after discharge. Parents in this study highlighted the emotional and psychological distress in survivors and families after PNCC, in contrast to most PNCC research focusing on physical outcomes. Several barriers to care were identified with potential implications on survivor outcomes, including limited pediatric resources in rural settings, perceived lack of awareness of PICS among medical providers, and the substantial financial burden on families. Parents desire improved education surrounding PICS morbidities for families and medical providers, improved communication with primary care providers after discharge, access to educational materials for patients and families, direction to mental health providers, and family support groups to assist them in dealing with morbidities and accessing appropriate resources. Clinicians and researchers should consider the parent perspectives reported here when caring for and evaluating outcomes for children requiring PNCC.

Keywords

pediatric - critical care - patient outcome assessment

Supplementary Material

 

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