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Perspectives of People with Cystic Fibrosis Considering Parenthood Surrounding Prenatal and Preconception Genetic Counseling and Testing

Rajanikanth, Gopika (2024) Perspectives of People with Cystic Fibrosis Considering Parenthood Surrounding Prenatal and Preconception Genetic Counseling and Testing. Master's Thesis, University of Pittsburgh. (Unpublished)

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People with Cystic fibrosis (pwCF) are living longer and increasingly considering their reproductive options. Currently there are many genetic testing options available for pwCF and their reproductive partners. Genetic counselors can help educate pwCF about these options and support them through the decision-making process. This study explored the role of genetics in the reproductive decisions of pwCF and their perspectives surrounding prenatal genetic counseling and testing. We conducted and recorded semi-structured telephone interviews with a national sample of pwCF age 18 years or older recruited from the CF Foundation Community Voice platform. We utilized Dedoose software and applied inductive thematic analysis to code the interview transcripts and elicit themes. We interviewed a total of 21 participants (age range 18-74 years, 76% women, 95% White, 5% Hispanic). 57% are parents and 33% are considering parenthood. Key themes included: (1) PwCF understood the genetics of CF (2) PwCF have differing views on the concern of passing CF onto biological children (3) The influence of carrier testing on biological parenthood decision making; (4) Participants were aware of the role of genetic counselors and valued gaining knowledge about CF genetics and feeling prepared for potential children with CF, but only half previously met with a genetic counselor; and (5) PwCF believe genetics information (including recessive inheritance, personal mutations, and modulator eligibility) should be presented during childhood/adolescence and reinforced when interested in family planning. PwCF expressed a broad range of views on the role of genetics in their
reproductive decisions. Although there is recognition of the role of genetic counseling and desire for knowledge from genetic testing, such services are underutilized. Our findings highlight the importance of a personalized, client-centered approach to offering genetic testing and providing genetic counseling services to pwCF. This research benefits public health by investigating the views of pwCF on how to better provide genetic counseling and testing services to pwCF. Future work should develop patient-, provider-, or systems-based interventions to best integrate high-quality genetics and genetic counseling care into the CF team for all pwCF.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
Rajanikanth, Gopikagor6@pitt.eduGOR6
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairKazmerski,
Committee MemberVento, JodieVENTOJM@pitt.eduVENTOJM
Committee MemberFelter, ElizabethEMFELTER@pitt.eduEMFELTER
Date: 14 May 2024
Date Type: Publication
Defense Date: 16 April 2024
Approval Date: 14 May 2024
Submission Date: 23 April 2024
Access Restriction: 2 year -- Restrict access to University of Pittsburgh for a period of 2 years.
Number of Pages: 84
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: Genetic Counseling, Cystic Fibrosis, Parenthood
Date Deposited: 14 May 2024 19:07
Last Modified: 14 May 2024 19:07


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