Open AccessDecision Making for Infants With Neurologic Conditions
Author(s) -
Charlotte Gerrity,
Samantha Farley,
Mary Carol Barks,
Peter A. Ubel,
Debra Brandon,
Kathryn I. Pollak,
Monica E. Lemmon
Publication year - 2022
Publication title -
journal of child neurology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.661
H-Index - 105
eISSN - 1702-6075
pISSN - 0883-0738
DOI - 10.1177/08830738211056779
Subject(s) - psychological intervention , general partnership , clinical decision making , psychology , family medicine , medicine , developmental psychology , psychiatry , finance , economics
Parents and clinicians caring for infants with neurologic disease often make high-stakes decisions about infant care. To characterize how these decisions occur, we enrolled infants with neurologic conditions, their parents, and their clinicians in a longitudinal mixed methods study of decision making. We audio recorded family conferences as they occurred and analyzed conferences using a directed content analysis approach. We enrolled 40 infants and 61 parents who participated in 68 family conferences. Thirty-seven conferences contained a treatment decision. We identified 4 key domains of the decision-making process: medical information exchange, values-based exchange, therapeutic partnership, and integration of values into decision making. Discussion of values was typically parent initiated (n = 20, 83%); approximately one-third of conferences did not contain any discussion of parent values. Integration of family values and preferences into decision making occurred in approximately half of conferences. These findings highlight opportunities for interventions that promote values discussion and the integration of values into decision making.