Decision Making for Infants With Neurologic Conditions.
Journal Article (Journal Article)
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.
Full Text
Duke Authors
Cited Authors
- Gerrity, C; Farley, S; Barks, MC; Ubel, PA; Brandon, D; Pollak, KI; Lemmon, ME
Published Date
- March 2022
Published In
Volume / Issue
- 37 / 3
Start / End Page
- 202 - 209
PubMed ID
- 35133902
Pubmed Central ID
- PMC9038601
Electronic International Standard Serial Number (EISSN)
- 1708-8283
Digital Object Identifier (DOI)
- 10.1177/08830738211056779
Language
- eng
Conference Location
- United States