Pregnancy Termination For Fetal Abnormality: Genetic Counselor Understanding of Patient Coping
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Corinne Schenone
College:
The College of Health Professions and Human Services
Major:
Genetic Counseling
Faculty Research Advisor(s):
Jill Fischer
Abstract:
Termination of pregnancy for fetal abnormality, also known as TOPFA, is a procedural intervention that deliberately ends a pregnancy affected by anomalies affecting bodily structures or functions. Genetic counselors are professionals who are trained to provide information to assist people in making well-informed, autonomous decisions while helping them adjust to and cope with revealed genetic information. Though genetic counselors frequently see patients for TOPFA, there are currently no specific guidelines for any healthcare providers treating these women. The aim of this study is to fill the gap and explore genetic counselors’ perspectives and understanding of women coping with TOPFA to aid in the provision of optimal care for women coping with TOPFA. Participants were recruited through National Society of Genetic Counselors (NSGC) via an email blast. Nine prenatal genetic counselors participated in semi-structured interviews with the researcher via the Zoom online communication platform. Qualitative content analysis identified eight major areas of discussion regarding genetic counselors’ perception and understanding of the patient experience with TOPFA: 1) role of the genetic counselor, 2) resources, 3) follow up, 4) patient coping, 5) impact of TOPFA, 6) barriers to care, 7) impact of the Dobbs decision, 8) advice for genetic counselors. This exploratory study highlights the inconsistencies in care that genetic counselors provide to TOPFA patients, as well as their understanding of such patients’ experiences. The findings of this study emphasizes the need for precise genetic counseling guidelines for the practice of provision of care for TOPFA. In conclusion, this exploratory study provides a foundation of knowledge regarding the genetic counselors’ understanding and perceptions of patient coping and experiences with TOPFA.