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.
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.
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).
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.
Correspondence Tellen D. Bennett: University of Colorado School of Medicine, Children’s Hospital Colorado, Aurora, CO. firstname.lastname@example.org.INCLUDE WHEN CITING Published online November 1, 2019; DOI: 10.3171/2019.8.PEDS19275.Disclosures Dr. Maertens reports receiving clinical or research support for the study described (includes equipment or material) from the Colorado Department of Human Services.