Parental Decision-Making Preferences in Neonatal Intensive Care.
To explore how characteristics of medical decisions influence parents' preferences for control over decisions for their seriously ill infants.



In qualitative interviews, parents of infants in the neonatal intensive care unit (NICU) were asked to consider all medical decisions they could recall, and were prompted with decisions commonly encountered in the NICU. For each decision, parents were asked detailed questions about who made each decision, whom they would have preferred to make the decision, and why. Using standard qualitative methods, responses were coded and organized such that decision-level characteristics could be analyzed according to preferred decision-making role.



Parents identified 2 factors that were associated with a preference to delegate decisions to the medical team (high degree of urgency, high level of required medical expertise) and 4 factors associated with a preference to retain parental control (high perceived risk, high personal experience with the decision, involvement of foreign bodily fluids, and similarity to decisions that they perceived as part of the normal parental role).



Characteristics of decisions influence preferences for control over medical decisions among parents of patients in the NICU. These insights may guide improvements in physician-parent communication and consent.
Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA; Division of Neonatology, The Children's Hospital of Philadelphia, Philadelphia, PA.
Elliott Mark
EM
Weiss
Department of Family Medicine and Community Health, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA.
Frances K
FK
Barg
Division of Neonatology, Children's Hospital of Philadelphia Newborn Care at Pennsylvania Hospital, Philadelphia, PA.
Noah
N
Cook
Mixed Methods Research Lab, Department of Family Medicine and Community Health, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA.
Emily
E
Black
Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA; Division of Oncology, The Children's Hospital of Philadelphia, Philadelphia, PA. Electronic address: joffes@upenn.edu.
Steven
S
Joffe
D000328:Adult; D003657:Decision Making; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal; D015931:Intensive Care, Neonatal; D008297:Male; D008962:Models, Theoretical; D010290:Parents; D057240:Patient Preference; D055815:Young Adult
NICU; ethics; neonatal intensive care unit; newborn; shared decision-making