Decision Making for Infants With Neurologic Conditions

Title

Decision Making for Infants With Neurologic Conditions

Creator

Gerrity C; Farley S; Barks MC; Ubel PA; Brandon D; Pollak KI; Lemmon ME

Publisher

Journal of Child Neurology

Date

2022

Subject

Children; Disabilities; Ethics; Infant; Neonate; Quality of life

Description

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. Copyright © The Author(s) 2022.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

June 2022 List

Collection

Citation

Gerrity C; Farley S; Barks MC; Ubel PA; Brandon D; Pollak KI; Lemmon ME, “Decision Making for Infants With Neurologic Conditions,” Pediatric Palliative Care Library, accessed February 5, 2023, https://pedpalascnetlibrary.omeka.net/items/show/17933.

Social Bookmarking