Anna Wesseler
Capstone Project Committee: Mary Easton; Sat Gupta, Ph.D.; Emily Hardisty, M.S., CGC; Randi Stewart, M.S., CGC
Background: McCoyd (2007 & 2009) and Kersting et al. (2005) indicate that long-term, tailored support is desired by women who terminate for fetal anomalies, yet this type of support is limited.
Purpose: The goals of this study were to assess the needs of individuals that have terminated for fetal indications and to describe and evaluate current support resources that address their immediate and long-term supportive needs.
Methods: This mixed method study collected qualitative and quantitative data through a focus group discussion with women who had terminated for fetal anomalies and an online survey of prenatal genetic counselors who are members of NSGC.
Results: Focus group participants expressed a desire for a personal contact and appropriate educational and informational support during the decision-making process. Desired long-term support included periodic meetings around difficult dates and important life events and remembrance rituals. 71 participants completed the survey. 66% of survey participants indicated that resources provided to patients who terminate for fetal anomalies likely do not meet all patient needs. Respondents felt that long-term, emotional, and informational patient needs were least likely to be met successfully. Prenatal genetic counselors reported limited quantity and limited awareness of resources to be the most common barriers to providing support resources to these patients. 54% percent of survey participants reported that they lack sufficient awareness of available and appropriate resources for patients who terminate for fetal anomalies.
Conclusions: We propose that future supportive programs for women and couples who terminate for fetal anomalies should consider including support services similar to those offered by Heartstrings Pregnancy & Infant Loss Support: connections program, general pregnancy loss support group, subsequent pregnancy support group, termination for fetal anomalies-specific support group, remembrance events, online support, and access to the director of bereavement and support services. These services may be supplemented with personal-contact services, informational support during the decision-making process, and periodic long-term support meetings. We developed a comprehensive resource describing 22 support programs for patients who terminate for fetal anomalies based on our online search and survey data to be shared with prenatal genetic counselors.