Author ORCID Identifier

https://orcid.org/0000-0002-9402-717X

Date of Graduation

5-2019

Document Type

Thesis (MS)

Program Affiliation

Genetic Counseling

Degree Name

Masters of Science (MS)

Advisor/Committee Chair

Aarti Ramdaney, MS, CGC

Committee Member

Syed Hashmi, MD, MPH, PhD

Committee Member

Jennifer Czerwinski, MS, CGC

Committee Member

Victoria Wagner, MS, CGC

Committee Member

Pamela Promecene, MD

Committee Member

Irena Milentijevic, PsyD

Abstract

Pregnancy termination for fetal anomaly (TFA) is a unique experience that can cause women to develop long-term, complicated grief. Although a woman’s experience with her healthcare providers has been previously identified as an important factor in coping, studies have shown that many women report their healthcare as lacking to some extent. Given the overlap in patient needs and the practice scope of a genetic counselor (GC), this study aimed to examine how genetic counseling may impact coping as well as explore patient expectations of GCs pre- and post-TFA. An online survey, which included the Brief COPE and The Short Version of The Perinatal Grief Scale, was distributed among private, online support groups. Appropriate statistical analysis tools, such as the Wilcoxon rank-sum and t-test, were utilized for quantitative analysis of the 124 responses, and thematic coding was utilized for qualitative analysis. Of participants who underwent TFA within the last two years, women who saw a GC utilized active coping, planning, and positive reframing significantly more than women who did not see a GC (p=0.001, p=0.031, p=0.027, respectively). GCs were perceived to have a positive impact on coping when providing information, objective care, emotional support, support resources, and follow-up care; these practices encouraged confidence in decision-making and gave participants hope for the future. This study not only identified key counseling roles for GCs prior to a TFA, but also demonstrated that genetic counseling prior to TFA may be beneficial to patient coping. Further studies are warranted to explore the needs of a more diverse patient population and to identify appropriate genetic counseling training methods to support those patients pursuing TFA.

Keywords

Genetic Counseling, Termination For Fetal Anomaly, Coping, Grief

Available for download on Tuesday, May 05, 2020

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