Decision Making for Infants With Neurologic Conditions

Charlotte Gerrity; Samantha Farley; Mary C. Barks; Peter A. Ubel; Debra Brandon; Kathryn I. Pollak; Monica E. Lemmon

doi:10.1177/08830738211056779

journal article Feb 08, 2022

Decision Making for Infants With Neurologic Conditions

Charlotte Gerrity

Samantha Farley Mary C. Barks

Peter A. Ubel Debra Brandon Kathryn I. Pollak Monica E. Lemmon

Journal of Child Neurology Vol. 37 No. 3 pp. 202-209 · SAGE Publications

View at Publisher Save 10.1177/08830738211056779

Abstract

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.

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Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences

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Annals of Neurology

Metrics

17

Citations

47

References

Details

Published: Feb 08, 2022
Vol/Issue: 37(3)
Pages: 202-209
License: View

Authors

C

Charlotte Gerrity

Duke University School of Medicine, Durham, NC, USA

S

Samantha Farley

Duke-Margolis Center for Health Policy, Durham, NC, USA

M

Mary C. Barks

Duke-Margolis Center for Health Policy, Durham, NC, USA

P

Peter A. Ubel

Duke University School of Medicine, Durham, NC, USA; Fuqua School of Business and Sanford School of Public Policy, Duke University, Durham, NC, USA

D

Debra Brandon

Duke University School of Nursing, Durham, NC, USA; Department of Pediatrics, Duke University School of Medicine, Durham, NC, USA

K

Kathryn I. Pollak

Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA; Duke Cancer Institute, Duke University School of Medicine, Durham, NC, USA

M

Monica E. Lemmon

Department of Pediatrics, Duke University School of Medicine, Durham, NC, USA; Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA

Funding

National Institute of Neurological Disorders and Stroke Award: K23NS116453

Cite This Article

Charlotte Gerrity, Samantha Farley, Mary C. Barks, et al. (2022). Decision Making for Infants With Neurologic Conditions. Journal of Child Neurology, 37(3), 202-209. https://doi.org/10.1177/08830738211056779

Decision Making for Infants With Neurologic Conditions

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