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Prenatal Genetic Counselors’ Perceptions of their Disability Training and Preparedness for Addressing Disability in Practice: A Thematic Analysis

Weise, Nicole (2024) Prenatal Genetic Counselors’ Perceptions of their Disability Training and Preparedness for Addressing Disability in Practice: A Thematic Analysis. Master's Thesis, University of Pittsburgh. (Unpublished)

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Prenatal genetic counselors often engage families in discussions about what it would mean for their child to be born with a genetic condition and, potentially, live with a disability. They are responsible for providing adequate, value-neutral information about the impact of genetic disease and facilitating informed decision-making based on their patients’ beliefs and values. Without sufficient disability training aimed at improving the knowledge, confidence, and competence necessary to support people with disabilities, genetic counseling students may feel unprepared or even uncomfortable having such discussions when they enter the profession. Prior studies have found that genetic counselors are more comfortable discussing the medical aspects of genetic disease, as opposed to social aspects and lived experiences, in part due to their graduate training. To our knowledge, there are no published qualitative studies exploring the extent and impact of disability training in genetic counseling programs. Through nine semi-structured interviews, this qualitative study explored prenatal genetic counselors’ comfort level with, and preparedness for, addressing disability in practice, as well as examined the perceived adequacy and impact of their disability training. Using semantic inductive thematic analysis, we identified six themes: 1) experiences outside of genetic counseling training contribute to disability competency, 2) theoretical and experiential learning about disability outside of a medical context are critical for disability training, 3) limitations of disability training in genetic counseling programs, 4) disability training differences and inconsistencies between and within genetic counseling programs, 5) challenges in discussing disability with patients, and 6) variability in genetic counseling approaches to and strategies for discussing disability with patients. The results captured by this study may be used to inform and improve disability curricula within genetic counseling programs. Disability training that incorporates the diverse perspectives of individuals with disabilities is necessary for genetic counseling curricula and the promotion of public health.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
Weise, Nicolendw37@pitt.edundw370000-0002-8824-3212
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairGrubs, Robinrgrubs@pitt.edurgrubs
Committee MemberDeem, Michaelmdeem@pitt.edumdeem
Committee MemberHoutrow,
Date: 16 May 2024
Date Type: Publication
Defense Date: 9 April 2024
Approval Date: 16 May 2024
Submission Date: 14 April 2024
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Number of Pages: 74
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Genetic Counseling
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: disability, disability training, disability competency, cultural competency, lived experience, genetic counseling, genetic counselor, prenatal genetic counseling, genetic counseling curriculum
Date Deposited: 16 May 2024 20:06
Last Modified: 16 May 2024 20:06


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