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Parental decision-making preferences in the pediatric intensive care unit*

Madrigal, Vanessa N. MD; Carroll, Karen W. BS; Hexem, Kari R. MPH; Faerber, Jennifer A. PhD; Morrison, Wynne E. MD, MBE; Feudtner, Chris MD, PhD, MPH

doi: 10.1097/CCM.0b013e31825b9151
Pediatric Critical Care

Objective: To assess parental decision-making preferences in the high-stress environment of the pediatric intensive care unit and test whether preferences vary with demographics, complex chronic conditions, prior admissions to the pediatric intensive care unit, and parental positive and negative emotional affect.

Design: Institutional Review Board–approved prospective cohort study conducted between December 2009 and April 2010.

Setting: Pediatric intensive care unit at The Children’s Hospital of Philadelphia.

Participants: Eighty-seven English-speaking parents of 75 children either <18 yrs of age or cognitively incapable of making their own decisions and who were hospitalized in the pediatric intensive care unit for >72 hrs.

Interventions: Parents were interviewed in person and completed standardized instruments that assessed decision-making preferences and parental affect.

Measurements and Main Results: The majority of parents in the analytic sample preferred shared decision making with their doctors (40.0%) or making the final decision/mostly making the final decision on their own (41.0%). None of the child and parent characteristics in the analytic sample were found to be significantly associated with the top decision-making preference. Using shared decision making as a reference category, we determined whether positive or negative affect scores were associated with preferring other decision-making options. We found that parents with higher positive affect were less likely to prefer self/mostly self (autonomous decision making). Increased positive affect was also associated with a reduced likelihood of preferring doctor/mostly doctor (delegating the decision), but not to a significant degree.

Conclusions: Most parents in the pediatric intensive care unit prefer their role in decision making to be shared with their doctor or to have significant autonomy in the final decision. A sizeable minority, however, prefer decision-making delegation. Parental emotional affect has an association with decision-making preference.

From the Division of Critical Care Medicine (VNM, WEM), Department of Anesthesiology and Critical Care, and Department of Pediatrics (KWC, KRH, JAF, CF) The Children’s Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA.

*See also p. 2917.

The authors have not disclosed any potential conflicts of interest. No financial support or institutional departmental funds were used for the study.

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© 2012 by the Society of Critical Care Medicine and Lippincott Williams & Wilkins