Author ORCID Identifier

Date of Graduation


Document Type

Thesis (MS)

Program Affiliation

Genetic Counseling

Degree Name

Masters of Science (MS)

Advisor/Committee Chair

Ann Theresa Wittman, MS, CGC

Committee Member

Callie Diamonstein, MS, CGC

Committee Member

Kathryn Gunther, MS, CGC

Committee Member

Rebecca Lunstroth, JD, MA

Committee Member

Kathryn Neubauer, MD

Committee Member

Claire Singletary, MS, CGC


After the identification of a life-limiting fetal diagnosis, a perinatal palliative care (PPC) team can provide specialized medical care and emotional support for the family throughout the pregnancy and after delivery. Although the growth of the field of PPC over the last ten years is well-documented, there is only one study to date that explores the experiences of genetic counselors with regards to PPC. This study seeks to further the understanding of genetic counselors’ current perceptions of, experiences with, and roles in the delivery of PPC.

An edited version of the Perinatal Palliative Care Perceptions and Barriers Scale was used to collect data via anonymous online survey of practicing genetic counselors. A total of 75 responses were used. Genetic counselors were more likely to be familiar with PPC if PPC was available at their institution (p=0.003) and if they had high levels of personal comfort with PPC (p<0.0001). Multiple linear regression analysis revealed that familiarity with PPC, confidence in caring for families with a life-limiting fetal diagnosis, personal comfort with PPC, and barriers genetic counselors experienced in their clinical practice were all statistically significant predictors for variance in genetic counselors’ comfort in referring to PPC. Conventional content analysis revealed that genetic counselors in our study generally believed that they are valuable members of the multidisciplinary team that participate in PPC.

The results of this study illustrate factors that impact referral comfort have evolved over the last ten years. The findings also exemplify the multidisciplinary nature of PPC and that PPC services are provided via a team of healthcare providers and other specialists. They also establish further support that genetic counselors are important part of the PPC team.


genetic counseling, perinatal palliative care, life-limiting fetal diagnosis, prenatal diagnosis



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