Date of Award

Spring 2023

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Jessica Fairey

Abstract

Non-invasive prenatal screening (NIPS) provides risk assessment for chromosome aneuploidy in pregnancy. Previous studies in the United Kingdom and United States have attempted to measure patient knowledge, decisional conflict, and informed choice in cohorts of English-speaking pregnant patients who elected NIPS (Griffin et al., 2023; Lewis et al., 2016). However, knowledge scales utilized in these studies have not been validated. The current study was conducted in order to assess face validity of a Spanish NIPS knowledge scale that was originally written in English. This scale was developed as part of a larger project to ultimately provide more validated research measures for future genetic counseling research.

Prenatal genetic counselors at Prisma Health Midlands identified qualifying participants who were Spanish-speaking, seen for prenatal genetic counseling and offered NIPS from May 2022 to January 2023. Participants were reached via phone, verbal consent to participate was obtained, and interviews were scheduled. Interviews were conducted via phone. Interview transcripts were analyzed using a “traffic light system” coding method described by Connell et al. (2018). All communication between the primary author and participants was conducted in Spanish.

Thirteen participants were interviewed for this study. All participants identified as Hispanic/Latina women with the majority reporting being born outside of the United States. After seven interviews were conducted, transcribed and coded, three items required revision. All items reached face validity with the completion of six additional

interviews. This is the first study to assess face validation of a Spanish NIPS knowledge scale. After achieving concept validity, this Spanish scale could be implemented into the multi-dimensional measure of informed choice (MMIC), which argues that a choice is considered informed when patients have adequate knowledge and their attitude about the choice aligns with their decision (Marteau et al., 2001). Having a validated NIPS MMIC scale in Spanish would allow for more diverse and inclusive research regarding NIPS decision-making.

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