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Assessing perinatal palliative care education within genetic counseling programs

Hager, Megan M (2018) Assessing perinatal palliative care education within genetic counseling programs. Master's Thesis, University of Pittsburgh. (Unpublished)

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Perinatal palliative care (PPC) is a clinical program that provides holistic care to critically ill fetuses and infants alongside psychosocial support to their family members. Genetic counselors are often consulted to explain prenatal or infantile conditions that are life-limiting or life-threatening. The function of the genetic counselor is to provide both education about a condition and supportive resources for their clients. Referral to a PPC program is one way a counselor may provide support. Therefore, being knowledgeable about the medical and psychosocial services offered by PPC programs is important. A recent study found that 11.4% of genetic counselors feel uncomfortable referring to these programs due to a lack of familiarity with PPC. This study aims to increase genetic counselor knowledge about PPC programs through the creation of educational resource materials for genetic counseling training programs accredited by the Accreditation Council for Genetic Counseling (ACGC). A Qualtrics survey was developed and administered to ACGC accredited program leadership to assess PPC education within the curricula, clinical internships, and supplementary activities. Additionally, program directors were asked if programs would benefit from creation of resource material. Survey data shows 85% of responding programs provide education about PPC, and 90% of respondents support creation of educational resource materials. Using the results of the survey to direct content and format of resource material, three documents were created: 1) A series of case studies were created that may also be used as roleplays, 2) An annotated bibliography directing users to articles, books, videos, and websites to increase PPC knowledge, and 3) A PowerPoint covering relevant topics in PPC. Additionally, a resource map identifying locations of PPC programs within the United States was created. This study is designed to impact public health by strengthening the educational experiences of genetic counseling students, with the goal of making them more comfortable when referring clients to PPC services.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
Hager, Megan Mmeg.hager@pitt.edummh1090000-0002-6529-8990
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairGrubs, Robin
Committee MemberKammerer,
Committee MemberMaurer,
Committee MemberJones,
Date: 17 September 2018
Date Type: Publication
Defense Date: 14 May 2018
Approval Date: 17 September 2018
Submission Date: 31 May 2018
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Number of Pages: 136
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Genetic Counseling
School of Public Health > Public Health Genetics
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: perinatal hospice, grief, resources, educational content, genetic counseling, perinatal palliative care, survey
Date Deposited: 17 Sep 2018 19:56
Last Modified: 17 Sep 2018 19:56


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