Counseling Preferences of Expectant Parents With a Fetal Neurologic Diagnosis: A Scoping Review of the Literature

Diagnosis and management of fetal neurologic conditions is evolving rapidly. This scoping review aims to synthesize existing literature characterizing parental preferences for fetal neurologic counseling. A literature search and screening of MEDLINE, Embase, and Web of Science databases resulted in 21 eligible articles. The most common fetal neurologic conditions studied included myelomeningocele (n = 6), anencephaly (n = 4), and Zika-related microcephaly (n = 3). Across conditions, parents valued receiving balanced prognostic information, support in decision making, and empathy from the care team. Findings also demonstrate unique counseling considerations for prenatal diagnosis families of myelomeningocele, the importance of recognizing the meaning of their pregnancy and fetus for families of children with anencephaly and holoprosencephaly, and early information needs for those with prenatally diagnosed Zika-related microcephaly. Future work should prioritize characterizing understudied perspectives in fetal counseling and defining the ways in which counseling impacts parental experience and well-being, as well as patient decision making for pregnancy and delivery management.

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Publication Details

Journal
Journal of Child Neurology
Published
2026-03-26
DOI
https://doi.org/10.1177/08830738261416614
Primary Topic
Spinal Dysraphism and Malformations
Type
article
Field-Weighted Citation Impact
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article

Counseling Preferences of Expectant Parents With a Fetal Neurologic Diagnosis: A Scoping Review of the Literature

Monica E. Lemmon, Sarahn M. Wheeler, SONIKA AGARWAL, Charu Venkatesan et al.
Journal of Child Neurology
Spinal Dysraphism and Malformations
article

Counseling Preferences of Expectant Parents With a Fetal Neurologic Diagnosis: A Scoping Review of the Literature

Monica E. Lemmon, Sarahn M. Wheeler, SONIKA AGARWAL, Charu Venkatesan, Samantha Kaplan, Kathryn S. Cain, Natalie K Field, Saisha Dhar, Suepriya Adhikari, Katelyn Young, Jeffrey B. Russ, Dawn Gano
article en

Abstract

Diagnosis and management of fetal neurologic conditions is evolving rapidly. This scoping review aims to synthesize existing literature characterizing parental preferences for fetal neurologic counseling. A literature search and screening of MEDLINE, Embase, and Web of Science databases resulted in 21 eligible articles. The most common fetal neurologic conditions studied included myelomeningocele (n = 6), anencephaly (n = 4), and Zika-related microcephaly (n = 3). Across conditions, parents valued receiving balanced prognostic information, support in decision making, and empathy from the care team. Findings also demonstrate unique counseling considerations for prenatal diagnosis families of myelomeningocele, the importance of recognizing the meaning of their pregnancy and fetus for families of children with anencephaly and holoprosencephaly, and early information needs for those with prenatally diagnosed Zika-related microcephaly. Future work should prioritize characterizing understudied perspectives in fetal counseling and defining the ways in which counseling impacts parental experience and well-being, as well as patient decision making for pregnancy and delivery management.

Journal of Child Neurology
Children's Hospital of Philadelphia (US), University of British Columbia (CA), Duke University (US), Duke Medical Center (US), UCSF Benioff Children's Hospital (US), Duke University Hospital (US), BC Children's Hospital (CA), University of Cincinnati Medical Center (US)
Peace, Justice and strong institutions
Openalex Percentile: Top 9%
Spinal Dysraphism and Malformations
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