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J Neurosurg Pediatr. 2019 Nov 1:1-9. doi: 10.3171/2019.8.PEDS19275. [Epub ahead of print]

Parental involvement in decision making about intracranial pressure monitor placement in children with traumatic brain injury.

Author information

1
1Adult and Child Consortium for Health Outcomes Research and Delivery Science (ACCORDS) and.
2
2Division of Geriatric Medicine, Department of Medicine, University of Colorado School of Medicine, Aurora.
3
6VA Eastern Colorado Geriatric Research Education and Clinical Center, Denver; and.
4
3Children's Hospital Colorado Research Institute, Aurora.
5
4Pediatric Neurosurgery and.
6
7Children's Hospital Colorado Center for Research in Outcomes for Children's Surgery, Aurora, Colorado.
7
5Pediatric Critical Care, University of Colorado School of Medicine, Aurora.

Abstract

OBJECTIVE:

Little is known about how parents of children with traumatic brain injury (TBI) participate or feel they should participate in decision making regarding placing an intracranial pressure (ICP) monitor. The objective of this study was to identify the perspectives and decisional or information needs of parents whose child sustained a TBI and may require an ICP monitor.

METHODS:

This was a qualitative study at one US level I pediatric trauma center. The authors conducted in-depth semistructured interviews with 1) parents of critically injured children who have sustained a TBI and 2) clinicians who regularly care for children with TBI.

RESULTS:

The authors interviewed 10 parents of 7 children (60% were mothers and 80% were white) and 28 clinicians (17 ICU clinicians and 11 surgeons). Overall, the authors found concordance between and among parents and clinicians about parental involvement in ICP monitor decision making. Parents and clinicians agreed that decision making about ICP monitoring in children who have suffered TBI is not and should not be shared between the parents and clinicians. The concordance was represented in 3 emergent themes. Parents wanted transparency, communication, and information (theme 2), but the life-threatening context of this decision (theme 1) created an environment where all involved reflected a clear preference for paternalism (theme 3).

CONCLUSIONS:

The clear and concordant preference for clinician paternalistic decision making coupled with the parents' needs to be informed suggests that a decision support tool for this decision should be clinician facing and should emphasize transparency in collaborative decision making between clinicians.

KEYWORDS:

ICP = intracranial pressure; TBI = traumatic brain injury; clinical decision making; intracranial hypertension; intracranial pressure; pediatrics; qualitative research; trauma; traumatic brain injury

PMID:
31675722
DOI:
10.3171/2019.8.PEDS19275

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