Date of Award

5-1-2006

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Nursing

Abstract

With advances in technology, the number of newborn metabolic diseases screened for has increased as well as the number of false positive initial screening results. The purpose of this study was to explore parents’ perception of receipt of education about newborn metabolic screening and the effect on parents of being notified of a positive newborn metabolic screening result on their infant who required retesting. Orem’s selfcare theory, with a focus on the supportive-educative nursing system, was used as a theoretical framework for this study.

A mixed quantitative correlational descriptive survey method and a qualitative grounded theory approach were used. Quantitative study participants completed a Demographic Survey Newborn Metabolic Screening form and the Parenting Stress Index Short Form. Interviews of parents were completed with the qualitative participants and analyzed using Barney Glaser’s constant comparative approach. The quantitative data analysis included frequency distributions of variables and non-parametric statistical tests. The interviews obtained in the qualitative component were analyzed for themes and patterns common to all participants. The quantitative study sample included 190 parents with infants bom during August and September 2005. Eight of the thirteen participants who had an infant with false positive initial screening results participated in the qualitative component of the study.

Over half (n = 126, 66.3%) of the participants perceived they had not received education about newborn metabolic screening prior to the testing and over half (n = 107, 56.3%) of the participants reported that they did not receive high quality education. The core phenomenon that emerged through interview with parents who had been notified of a false positive initial screening result on their infant was entitled Challenged Coping and Adaptation.

The conclusions were that parents’ did not perceive they received adequate or quality education regarding newborn metabolic screening. Parental education does have an effect on parents’ ability to cope and adapt to notification of a false positive initial screening result. Nursing implications include the need to advocate for parents and their infants through provision of education including their right to refuse for religious purposes, involvement in research and policy development related to newborn metabolic screening.

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