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Full text release has been delayed at the author's request until May 01, 2027

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From Womb to Crib: Parents’ Recollection of Prenatal Genetic Counseling and its Perceived Impact in Navigating Inpatient Genetic Care

D'Souza, Aileen
http://orcid.org/0009-0008-7611-8597
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1746535271746448

Abstract Details

2025, MS, University of Cincinnati, Medicine: Genetic Counseling.
Genetics care providers play a vital role in educating families of children with known or suspected genetic conditions. While many families do not come to the attention of genetics until after a baby is born, a portion of families receive prenatal genetics care for the same indication, often by a genetic counselor (GC). GCs have a unique role as they often provide care to families in both the prenatal and NICU settings. Previous research has focused on the impact of prenatal genetic care (PGC) on expectant parents’ feelings of preparedness and understanding of their child’s genetic care. However, the time between PGC and inpatient genetics care (IGC) can span weeks or months, during which the phenotype and prognosis of a fetus at risk for a genetic condition may change significantly, including postnatally with new findings. It is unclear whether or how PGC informs parents’ experiences of their child’s genetic care in the NICU setting. As the uptake of both PGC and IGC continues to increase, information is needed to help genetics providers understand how to best serve families as they navigate the prenatal-to-postnatal transition period and subsequent NICU stay. We conducted semi-structured interviews of 12 parents to investigate the perceived impact of PGC on their preparedness for the child’s NICU stay, to elicit their overall experience of genetics care in these settings, and to explore parents’ feelings regarding the anticipatory guidance they received during PGC. Interview transcripts were coded alongside retrospective chart review to compare parents’ recollections of PGC and IGC with the information documented by their GC(s) to assess the accuracy of parent recollections. Participants described differences in their experience of PGC vs. IGC sessions and appreciated meeting with genetics in both settings. Participants reported they felt more prepared for life with a medically complex child and appreciated the continuity of care from genetics. Participants preferred GCs to approach families in a compassionate and personalized manner, especially given the stressful nature of the inpatient setting. With multiple providers and competing priorities in the inpatient setting, study participants had less accurate recall with IGC in comparison to PGC, underscoring the importance of for more research and insight into how we can best serve patients in this setting. Overall, the results emphasize the importance of genetic counselors in both settings to support parents in feeling more empowered and prepared to care for their child.
Carrie Atzinger, M.S. C.G.C. (Committee Chair)
Kimberly Widmeyer (formerly Lewis), MS (Committee Member)
JACQUELYNN BERTON, M.S. B.A. (Committee Member)
Melanie Myers, Ph.D. (Committee Member)
Beatrix Wong, M.S. (Committee Member)
42 p.
Genetics
Prenatal genetic counseling; inpatient genetic counseling; NICU; parental experiences; genetic diagnosis; diagnostic odyssey

Recommended Citations

Citations

  • D'Souza, A. (2025). From Womb to Crib: Parents’ Recollection of Prenatal Genetic Counseling and its Perceived Impact in Navigating Inpatient Genetic Care [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1746535271746448

    APA Style (7th edition)

  • D'Souza, Aileen. From Womb to Crib: Parents’ Recollection of Prenatal Genetic Counseling and its Perceived Impact in Navigating Inpatient Genetic Care. 2025. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin1746535271746448.

    MLA Style (8th edition)

  • D'Souza, Aileen. "From Womb to Crib: Parents’ Recollection of Prenatal Genetic Counseling and its Perceived Impact in Navigating Inpatient Genetic Care." Master's thesis, University of Cincinnati, 2025. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1746535271746448

    Chicago Manual of Style (17th edition)

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© 2025, all rights reserved.
This open access ETD is published by University of Cincinnati and OhioLINK.
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