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Full text of this paper is not available in the ETD Center. Copies may be available for inter-library loan from University of Cincinnati or may be available for purchase from Proquest/UMI

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PARENTS' KNOWLEDGE OF AND EXPERIENCES WITH THE OHIO NEWBORN SCREENING

Daniels, Molly Serena
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1029504389

Abstract Details

2002, MS, University of Cincinnati, Allied Health Sciences : Genetic Counseling.
Objective: Anticipating an increase in the number of false positive results with the recent expansion of Ohio's mandated newborn screening program, this study was undertaken to determine parents' comprehension of the screening program, and to characterize parents' experiences when receiving either false positive or normal screening test results. Methods: Questionnaires were mailed to parents of 573 recipients of false positive results, and to parents of 1676 recipients of normal results, who were matched to false positive recipients by birth hospital. The questionnaire evaluated parents' knowledge of the screening program, parental stress associated with the screening process, and parental attitudes concerning the expansion of newborn screening. The questionnaire also included an open-ended question inviting parents to describe their experiences. Results: Response rate was 36%. 40%-60% of respondents incorrectly answered questions concerning the number and type of disorders for which Ohio screened. Parents receiving false positive results were significantly more likely (p<0.0001) than parents receiving normal results to report that their experience had been stressful. Recipients of false positive results for a recently instituted test were more likely to report stress than recipients of false positive results for an established test (p<0.001). One-quarter of respondents completed the open-ended question. These responses revealed multiple sources of stress, including parents' lack of information, the effort and time needed to complete the follow-up to positive results, and parents' perception that health care providers were not well informed regarding follow-up protocol. The majority of respondents were in favor of further expansion of newborn screening, regardless of whether they had received a false positive result. Conclusions: This study demonstrates the need to reduce parental stress associated with newborn screening, through improved parent education and communication between parents, primary care providers, and the state screening program.
Dr. Nancy Leslie (Advisor)
1 p.
newborn screening; false positive results; parent comprehension; parents' experience

Recommended Citations

Citations

  • Daniels, M. S. (2002). PARENTS' KNOWLEDGE OF AND EXPERIENCES WITH THE OHIO NEWBORN SCREENING [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1029504389

    APA Style (7th edition)

  • Daniels, Molly. PARENTS' KNOWLEDGE OF AND EXPERIENCES WITH THE OHIO NEWBORN SCREENING. 2002. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin1029504389.

    MLA Style (8th edition)

  • Daniels, Molly. "PARENTS' KNOWLEDGE OF AND EXPERIENCES WITH THE OHIO NEWBORN SCREENING." Master's thesis, University of Cincinnati, 2002. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1029504389

    Chicago Manual of Style (17th edition)

ucin1029504389
© 2002, all rights reserved.
This open access ETD is published by University of Cincinnati and OhioLINK.