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Parental beliefs and attitudes toward false positive newborn screening results for Krabbe disease: A qualitative study

Peterson, Laiken E

Abstract Details

2019, Master of Science, Ohio State University, Genetic Counseling.
Introduction: Newborn screening for Krabbe disease, a rare, lysosomal storage disorder resulting in the demyelination of nerve cells and early death, began in the state of Ohio in 2016. Krabbe disease became the first, and only condition on the newborn screening panel, to be mandated by the state despite multiple expert panels and healthcare providers voicing that screening for the condition is inappropriate at this time. Healthcare provider opinions have been documented, but very few researchers have sought out parental opinions of Krabbe newborn screening. The aims of this study were to (1) determine common themes regarding parental experiences with false positive newborn screening results for Krabbe disease, (2) ascertain parents’ opinions of Krabbe newborn screening and (3) assess the beliefs and attitudes of parents whose infant received a false positive Krabbe result. Methods: Twelve families who received a false positive newborn screen for Krabbe disease and received genetic counseling at Nationwide Children’s Hospital in Columbus, Ohio consented to participate in semi-structured interviews. Interviews explored participants’ thoughts, attitudes, and experiences throughout the newborn screening process, including ascertaining their opinions regarding treatment and newborn screening for Krabbe disease. Interviews were transcribed, coded, and analyzed using a Grounded Theory approach. Results: Eleven of the twelve transcripts were analyzed and revealed three major themes: (1) improved understanding of the newborn screening process from a parent perspective (2) the role of healthcare provider communication, and (3) the value of newborn screening for Krabbe disease. Many parents were unfamiliar with Krabbe disease and the newborn screening process. Parents voiced a wide variety of experiences and negative emotions regarding healthcare provider communication and result disclosure. While they were still experiencing negative emotions regarding their child’s positive newborn screen, parents felt reassured by the education provided by the genetic counselor. All parents see worth in screening for Krabbe disease; although, some voiced concerns regarding the likelihood of a false positive result. Conclusion: This study built upon the limited data available regarding parental opinions and experiences with Krabbe newborn screening. The primary conclusion of this study included the need for genetic counselors to be more fully integrated in the newborn screening process. Additionally, it gave insight into parental opinions and uncertainties regarding newborn screening for Krabbe disease.
Dawn Allain, MS, LGC (Advisor)
Kim McBride, MD, MS (Committee Member)
Amy Siemon, MS, LGC (Committee Member)
83 p.

Recommended Citations

Citations

  • Peterson, L. E. (2019). Parental beliefs and attitudes toward false positive newborn screening results for Krabbe disease: A qualitative study [Master's thesis, Ohio State University]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=osu1554370391330618

    APA Style (7th edition)

  • Peterson, Laiken. Parental beliefs and attitudes toward false positive newborn screening results for Krabbe disease: A qualitative study. 2019. Ohio State University, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=osu1554370391330618.

    MLA Style (8th edition)

  • Peterson, Laiken. "Parental beliefs and attitudes toward false positive newborn screening results for Krabbe disease: A qualitative study." Master's thesis, Ohio State University, 2019. http://rave.ohiolink.edu/etdc/view?acc_num=osu1554370391330618

    Chicago Manual of Style (17th edition)