An Exploration of the Availability of Perinatal Palliative Care Services: Services Genetic Counselors Provide When No Formal Perinatal Palliative Care Service is Available
Capstone Project Committee: Nancy Callanan, MS, CGC, Sat Gupta, PhD (Statistical Consultant), Melanie Hardy, MS, CGC, Jean St. John, MS, CGC, Diane Vargo, RN, MS, CGC
Background: Perinatal palliative care (PPC) is a service that aids families who learn of a fetus’s life-limiting condition during the course of a pregnancy. Genetic counselors are able to refer families to PPC after providing them with the news of a life-limiting condition in their unborn baby. Limited data exists regarding PPC from the genetic counseling perspective. Purpose: The goal of this study was to assess prenatal genetic counselors’ knowledge regarding the availability of PPC services, how they meet the needs of their patients when no organized PPC services are available locally, and their perceptions of PPC and barriers to providing PPC. Methods: This was assessed via anonymous online survey that was developed following a review of the literature. It included the Perinatal Palliative Care Perceptions and Barriers Scale (PPCPBS) Instrument© (Wool & Northam, 2011). Members of the National Society of Genetic Counselors were invited to participate in an online survey made available in winter of 2012. Practicing prenatal genetic counselors and those who have practiced within the last five years were eligible participants. Results: A total of 141 genetic counselors participated in the survey. Descriptive statistics indicated that the majority of participants have access to PPC services and that those without access offer aspects of PPC to their clients. Results from the PPCPBS Instrument indicated that participants held positive perceptions of PPC and encounter few barriers to providing PPC. Genetic counselors with access to PPC were more likely to hold positive perceptions of PPC (p= .011) and encounter few barriers to providing PPC for their clients (p < 0.0001). Qualitative data was collected regarding perceptions, barriers, and availability of PPC. Open-ended responses revealed overwhelmingly positive themes regarding participants’ perception of PPC, the provision of PPC for clients, and advice for counselors without access to PPC. Themes included: pursuit of PPC/TOP is individual to each client, all options should be presented to clients, and PPC is valuable for clients and providers. Additionally, there was encouragement for counselors without PPC to start a program, seek support from local resources, and to facilitate access to services for clients. Qualitative data was also collected regarding barriers to providing PPC. Themes that emerged included: having access to some aspects of PPC despite lack of a formal program, lack of resources, and lack of support for PPC from the institution or other health care providers. Conclusion: Overall, participants have access to PPC, appear to have a positive perception of PPC, and encounter few barriers to providing PPC to clients. Participants without access provide aspects of PPC to their clients. Qualitative responses further elucidated the perceived value of PPC for genetic counseling clients in position to utilize such services. This study can be added to the limited body of literature regarding genetic counselors and perinatal palliative care.
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