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