"Stuck in the ICU": Caring for Children With Chronic Critical Illness

Carrie M. Henderson, Erin P. Williams, Miriam C. Shapiro, Emily Hahn, Laura Wright-Sexton, Nancy Hutton, Renee D. Boss

Research output: Contribution to journalArticle

Abstract

OBJECTIVE: Neonatal ICUs and PICUs increasingly admit patients with chronic critical illness: children whose medical complexity leads to recurrent and prolonged ICU hospitalizations. We interviewed participants who routinely care for children with chronic critical illness to describe their experiences with ICU care for pediatric chronic critical illness.

DESIGN: Semi-structured interviews. Interviews were transcribed and analyzed for themes.

SETTING: Stakeholders came from five regions (Seattle, WA; Houston, TX; Jackson, MS; Baltimore, MD; and Philadelphia, PA).

SUBJECTS: Fifty-one stakeholders including: 1) interdisciplinary providers (inpatient, outpatient, home care, foster care) with extensive chronic critical illness experience; or 2) parents of children with chronic critical illness.

INTERVENTIONS: Telephone or in-person interviews.

MEASUREMENTS AND MAIN RESULTS: Stakeholders identified several key issues and several themes emerged after qualitative analysis. Issues around chronic critical illness patient factors noted that patients are often relocated to the ICU because of their medical needs. During extended ICU stays, these children require longitudinal relationships and developmental stimulation that outstrip ICU capabilities. Family factors can affect care as prolonged ICU experience leads some to disengage from decision-making. Clinician factors noted that parents of children with chronic critical illness are often experts about their child's disease, shifting the typical ICU clinician-parent relationship. Comprehensive care for children with chronic critical illness can become secondary to needs of acutely ill patients. Lastly, with regard to system factors, stakeholders agreed that achieving consistent ICU care goals is difficult for chronic critical illness patients.

CONCLUSIONS: ICU care is poorly adapted to pediatric chronic critical illness. Patient, family, clinician, and system factors highlight opportunities for targeted interventions toward improvement in care.

Fingerprint

Critical Illness
Chronic Disease
Interviews
Child Care
Parents
Pediatrics
Baltimore
Neonatal Intensive Care Units
Home Care Services
Ambulatory Care
Telephone
Inpatients
Decision Making
Hospitalization

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Critical Care and Intensive Care Medicine

Cite this

"Stuck in the ICU" : Caring for Children With Chronic Critical Illness. / Henderson, Carrie M.; Williams, Erin P.; Shapiro, Miriam C.; Hahn, Emily; Wright-Sexton, Laura; Hutton, Nancy; Boss, Renee D.

In: Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies, Vol. 18, No. 11, 01.11.2017, p. e561-e568.

Research output: Contribution to journalArticle

@article{a0636abad44b48558778ebdb43f7b6ec,
title = "{"}Stuck in the ICU{"}: Caring for Children With Chronic Critical Illness",
abstract = "OBJECTIVE: Neonatal ICUs and PICUs increasingly admit patients with chronic critical illness: children whose medical complexity leads to recurrent and prolonged ICU hospitalizations. We interviewed participants who routinely care for children with chronic critical illness to describe their experiences with ICU care for pediatric chronic critical illness.DESIGN: Semi-structured interviews. Interviews were transcribed and analyzed for themes.SETTING: Stakeholders came from five regions (Seattle, WA; Houston, TX; Jackson, MS; Baltimore, MD; and Philadelphia, PA).SUBJECTS: Fifty-one stakeholders including: 1) interdisciplinary providers (inpatient, outpatient, home care, foster care) with extensive chronic critical illness experience; or 2) parents of children with chronic critical illness.INTERVENTIONS: Telephone or in-person interviews.MEASUREMENTS AND MAIN RESULTS: Stakeholders identified several key issues and several themes emerged after qualitative analysis. Issues around chronic critical illness patient factors noted that patients are often relocated to the ICU because of their medical needs. During extended ICU stays, these children require longitudinal relationships and developmental stimulation that outstrip ICU capabilities. Family factors can affect care as prolonged ICU experience leads some to disengage from decision-making. Clinician factors noted that parents of children with chronic critical illness are often experts about their child's disease, shifting the typical ICU clinician-parent relationship. Comprehensive care for children with chronic critical illness can become secondary to needs of acutely ill patients. Lastly, with regard to system factors, stakeholders agreed that achieving consistent ICU care goals is difficult for chronic critical illness patients.CONCLUSIONS: ICU care is poorly adapted to pediatric chronic critical illness. Patient, family, clinician, and system factors highlight opportunities for targeted interventions toward improvement in care.",
author = "Henderson, {Carrie M.} and Williams, {Erin P.} and Shapiro, {Miriam C.} and Emily Hahn and Laura Wright-Sexton and Nancy Hutton and Boss, {Renee D.}",
year = "2017",
month = "11",
day = "1",
doi = "10.1097/PCC.0000000000001332",
language = "English (US)",
volume = "18",
pages = "e561--e568",
journal = "Pediatric Critical Care Medicine",
issn = "1529-7535",
publisher = "Lippincott Williams and Wilkins",
number = "11",

}

TY - JOUR

T1 - "Stuck in the ICU"

T2 - Caring for Children With Chronic Critical Illness

AU - Henderson, Carrie M.

AU - Williams, Erin P.

AU - Shapiro, Miriam C.

AU - Hahn, Emily

AU - Wright-Sexton, Laura

AU - Hutton, Nancy

AU - Boss, Renee D.

PY - 2017/11/1

Y1 - 2017/11/1

N2 - OBJECTIVE: Neonatal ICUs and PICUs increasingly admit patients with chronic critical illness: children whose medical complexity leads to recurrent and prolonged ICU hospitalizations. We interviewed participants who routinely care for children with chronic critical illness to describe their experiences with ICU care for pediatric chronic critical illness.DESIGN: Semi-structured interviews. Interviews were transcribed and analyzed for themes.SETTING: Stakeholders came from five regions (Seattle, WA; Houston, TX; Jackson, MS; Baltimore, MD; and Philadelphia, PA).SUBJECTS: Fifty-one stakeholders including: 1) interdisciplinary providers (inpatient, outpatient, home care, foster care) with extensive chronic critical illness experience; or 2) parents of children with chronic critical illness.INTERVENTIONS: Telephone or in-person interviews.MEASUREMENTS AND MAIN RESULTS: Stakeholders identified several key issues and several themes emerged after qualitative analysis. Issues around chronic critical illness patient factors noted that patients are often relocated to the ICU because of their medical needs. During extended ICU stays, these children require longitudinal relationships and developmental stimulation that outstrip ICU capabilities. Family factors can affect care as prolonged ICU experience leads some to disengage from decision-making. Clinician factors noted that parents of children with chronic critical illness are often experts about their child's disease, shifting the typical ICU clinician-parent relationship. Comprehensive care for children with chronic critical illness can become secondary to needs of acutely ill patients. Lastly, with regard to system factors, stakeholders agreed that achieving consistent ICU care goals is difficult for chronic critical illness patients.CONCLUSIONS: ICU care is poorly adapted to pediatric chronic critical illness. Patient, family, clinician, and system factors highlight opportunities for targeted interventions toward improvement in care.

AB - OBJECTIVE: Neonatal ICUs and PICUs increasingly admit patients with chronic critical illness: children whose medical complexity leads to recurrent and prolonged ICU hospitalizations. We interviewed participants who routinely care for children with chronic critical illness to describe their experiences with ICU care for pediatric chronic critical illness.DESIGN: Semi-structured interviews. Interviews were transcribed and analyzed for themes.SETTING: Stakeholders came from five regions (Seattle, WA; Houston, TX; Jackson, MS; Baltimore, MD; and Philadelphia, PA).SUBJECTS: Fifty-one stakeholders including: 1) interdisciplinary providers (inpatient, outpatient, home care, foster care) with extensive chronic critical illness experience; or 2) parents of children with chronic critical illness.INTERVENTIONS: Telephone or in-person interviews.MEASUREMENTS AND MAIN RESULTS: Stakeholders identified several key issues and several themes emerged after qualitative analysis. Issues around chronic critical illness patient factors noted that patients are often relocated to the ICU because of their medical needs. During extended ICU stays, these children require longitudinal relationships and developmental stimulation that outstrip ICU capabilities. Family factors can affect care as prolonged ICU experience leads some to disengage from decision-making. Clinician factors noted that parents of children with chronic critical illness are often experts about their child's disease, shifting the typical ICU clinician-parent relationship. Comprehensive care for children with chronic critical illness can become secondary to needs of acutely ill patients. Lastly, with regard to system factors, stakeholders agreed that achieving consistent ICU care goals is difficult for chronic critical illness patients.CONCLUSIONS: ICU care is poorly adapted to pediatric chronic critical illness. Patient, family, clinician, and system factors highlight opportunities for targeted interventions toward improvement in care.

UR - http://www.scopus.com/inward/record.url?scp=85046567987&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85046567987&partnerID=8YFLogxK

U2 - 10.1097/PCC.0000000000001332

DO - 10.1097/PCC.0000000000001332

M3 - Article

C2 - 28922265

AN - SCOPUS:85046567987

VL - 18

SP - e561-e568

JO - Pediatric Critical Care Medicine

JF - Pediatric Critical Care Medicine

SN - 1529-7535

IS - 11

ER -