Decision Making for Infants With Neurologic Conditions

Author:

Gerrity Charlotte1ORCID,Farley Samantha2,Barks Mary C.2ORCID,Ubel Peter A.13,Brandon Debra45,Pollak Kathryn I.67,Lemmon Monica E.56ORCID

Affiliation:

1. Duke University School of Medicine, Durham, NC, USA

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

3. Fuqua School of Business and Sanford School of Public Policy, Duke University, Durham, NC, USA

4. Duke University School of Nursing, Durham, NC, USA

5. Department of Pediatrics, Duke University School of Medicine, Durham, NC, USA

6. Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA

7. Duke Cancer Institute, Duke University School of Medicine, Durham, NC, USA

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.

Funder

National Institute of Neurological Disorders and Stroke

Publisher

SAGE Publications

Subject

Neurology (clinical),Pediatrics, Perinatology and Child Health

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