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Williams CN, Eriksson C, Piantino J, et al. Long-term Sequelae of Pediatric Neurocritical Care: The Parent Perspective. J Pediatr Intensive Care. 2018;7(4):173-181doi: 10.1055/s-0038-1637005.
Williams, C. N., Eriksson, C., Piantino, J., Hall, T., Moyer, D., Kirby, A., & McEvoy, C. (2018). Long-term Sequelae of Pediatric Neurocritical Care: The Parent Perspective. Journal of pediatric intensive care, 7(4), 173-181. https://doi.org/10.1055/s-0038-1637005
Williams, Cydni N, et al. "Long-term Sequelae of Pediatric Neurocritical Care: The Parent Perspective." Journal of pediatric intensive care vol. 7,4 (2018): 173-181. doi: https://doi.org/10.1055/s-0038-1637005
Williams CN, Eriksson C, Piantino J, Hall T, Moyer D, Kirby A, McEvoy C. Long-term Sequelae of Pediatric Neurocritical Care: The Parent Perspective. J Pediatr Intensive Care. 2018 Dec;7(4):173-181. doi: 10.1055/s-0038-1637005. Epub 2018 Mar 09. PMID: 31073491; PMCID: PMC6506677.
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J Pediatr Intensive Care. 2018 Dec;7(4):173-181. doi: 10.1055/s-0038-1637005. Epub 2018 Mar 09.

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

Journal of pediatric intensive care

Cydni N Williams, Carl Eriksson, Juan Piantino, Trevor Hall, Danielle Moyer, Aileen Kirby, Cindy McEvoy

Affiliations

  1. Division of Pediatric Critical Care, Department of Pediatrics, Oregon Health and Science University, Portland, Oregon, United States.
  2. Division of Pediatric Neurology, Department of Pediatrics, Oregon Health and Science University, Portland, Oregon, United States.
  3. Division of Pediatric Psychology, Department of Pediatrics, Oregon Health and Science University, Portland, Oregon, United States.
  4. Division of Neonatology, Department of Pediatrics, Oregon Health and Science University, Portland, Oregon, United States.

PMID: 31073491 PMCID: PMC6506677 DOI: 10.1055/s-0038-1637005

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: critical care; patient outcome assessment; pediatric

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