Perceptions and Roles of Genetic Counselors In Perinatal Palliative Care: Where Are We Now?

<p> 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.</p> <p> 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.</p> <p> 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. </p>

Name thesis:degree_name

Masters of Science (MS)

Level thesis:degree_level

Thesis (MS)

Year dc:date.available

2022

Authors dc:creator

• Chamberlain, Amanda
• https://orcid.org/0000-0002-6916-3479

Contributors dc:contributor

• Ann Theresa Wittman, MS, CGC
• Callie Diamonstein, MS, CGC
• Kathryn Gunther, MS, CGC

• genetic counseling
• perinatal palliative care
• life-limiting fetal diagnosis
• prenatal diagnosis
• Medicine and Health Sciences
• Obstetrics and Gynecology
• Palliative Care

Repository record dc:identifier

https://digitalcommons.library.tmc.edu/utgsbs_dissertations/1201

OAI identifier oai:identifier

oai:digitalcommons.library.tmc.edu:utgsbs_dissertations-2258