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Alobar Holoprosencephaly: Parental Perspectives on Prenatal Decision-making, Prenatal Provider Prognostication, and Quality of Life

Elfarawi, Hunaydah
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1617108856885634

Abstract Details

2021, MS, University of Cincinnati, Medicine: Genetic Counseling.
Parents receiving a prenatal diagnosis of alobar holoprosencephaly (HPE) often experience a difficult period of uncertainty regarding the outcome of the pregnancy and newborn period. As this is a rare condition, there is little information on how best to counsel and support families receiving this diagnosis. This retrospective mixed methods study investigated parental experiences and wishes after receiving a prenatal diagnosis of alobar HPE. Eight female participants were interviewed about factors impacting their decision-making process after the prenatal diagnosis, their experiences with their healthcare providers, and their expectations for their child’s length and quality of life. Parents named religious beliefs, personal beliefs, perceived suffering of their child, and provider prognostication as the main factors contributing to their decisions regarding continuation of pregnancy and goals of care for their baby at birth. When asked about decisional regret, most parents reported having no regret in the choices they made and affirmed they would make the same decisions again. Many parents felt pressured by providers to terminate the pregnancy once they were told their child was not expected to survive past the neonatal period. Parental expectations for their child’s length and quality of life were largely based on information conveyed during prenatal counseling by the providers after the diagnosis had been made. Expectations often differed from reality, as parents reported not being prepared for the possibility of their child living beyond the perinatal period. This study found that parents receiving a prenatal diagnosis of alobar HPE who continue the pregnancy require access to informational resources and referrals to services such as genetic counseling, palliative care and bereavement, and pastoral care. Providers should offer more detailed and expanded counseling about the prognosis, morbidity, and mortality during prenatal counseling on alobar HPE.
Michelle Mcgowan, Ph.D. (Committee Chair)
DonnaMaria Cortezzo, M.D. (Committee Member)
Leandra Tolusso, M.S. (Committee Member)
Marissa Vawter-Lee (Committee Member)
35 p.
Surgery
alobar holoprosencephaly; prenatal diagnosis; quality of life; medical intervention or comfort care; pregnancy continuation; decision making

Recommended Citations

Citations

  • Elfarawi, H. (2021). Alobar Holoprosencephaly: Parental Perspectives on Prenatal Decision-making, Prenatal Provider Prognostication, and Quality of Life [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1617108856885634

    APA Style (7th edition)

  • Elfarawi, Hunaydah. Alobar Holoprosencephaly: Parental Perspectives on Prenatal Decision-making, Prenatal Provider Prognostication, and Quality of Life. 2021. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin1617108856885634.

    MLA Style (8th edition)

  • Elfarawi, Hunaydah. "Alobar Holoprosencephaly: Parental Perspectives on Prenatal Decision-making, Prenatal Provider Prognostication, and Quality of Life." Master's thesis, University of Cincinnati, 2021. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1617108856885634

    Chicago Manual of Style (17th edition)

ucin1617108856885634
138
© 2021, all rights reserved.
This open access ETD is published by University of Cincinnati and OhioLINK.
Release 3.2.12