Date of Graduation

5-2014

Document Type

Thesis (MS)

Program Affiliation

Genetic Counseling

Degree Name

Masters of Science (MS)

Advisor/Committee Chair

Jennifer Czwerwinski, MS, CGC

Committee Member

Syed S. Hashmi, MD, MPH, PhD

Committee Member

Steven D. Meltzer, MD

Committee Member

Manju Monga, MD

Committee Member

Rebecca Carter, MS, CGC

Abstract

With the rapidly evolving field of prenatal testing, there is a growing need to provide support for women pursuing a termination of pregnancy following the discovery of a fetal anomaly. Previous studies have documented that women in this situation often feel unsupported after the procedure, but the type of resources desired by this population remains undetermined. A longitudinal study was performed in 51 women terminating for a fetal anomaly at a private clinic at the time of the procedure, at 6 weeks, and at 3 months following the event. Surveys were kept anonymous and investigated the awareness and utilization of support resources as well as influential and preventative factors. Though largely knowledgeable of the existing resources, only 50% admitted contemplating their individualized need for support. Anonymity, ease of access, and the desire to meet others in a similar situation online were commonly selected as the most influential factors in the decision to participate in support systems. Regardless, most women expected to rely on the support from family and friends. Only four respondents expressed that a lack of support from family and friends would influence them to pursue other support resources. Additionally, 50% expressed the desire to commemorate the pregnancy, though none wanted direct contact with their healthcare provider(s). The desire to move on from the pregnancy was the most cited factor that prevented consideration of support resources in the follow-up period and seemed more important to this population than other influential factors. However, many women indicated not coping as expected and were unprepared for the psychological consequences following the procedure. Our findings indicate that women in these situations may not realize what their long-term support needs will be. Additional support resources that promote a flexible timeframe for uptake need to be developed to meet the unique desires of this population.

Keywords

Termination of pregnancy, Abortion, Fetal anomaly, Support resources, Genetic counseling

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