CCE Theses and Dissertations

Date of Award

2019

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

College of Computing and Engineering

Advisor

Gertrude W. Abramson

Committee Member

Marilyn V. Olander

Committee Member

Kim Round

Abstract

Parents do not always receive accurate, timely and comprehensive information regarding a positive newborn screening from their infants’ primary care providers. The dissertation outlines the investigation of this problem. The methodology of the study is discussed including the survey of parents and primary care providers using the past system, the development of a web portal with a focus on plain language and action focused handouts. Without a simple to understand parent handout the newborn screening process is more stressful to families. Review of the literature is detailed including newborn screening, patient education, health literacy, Internet usage, online health education, design of patient education websites and the evaluative process of learning tools.

Surveys informed the content of the web-based patient portal for both parents and PCP. Abbreviated parental stress scores did not identify elevated stress in parents during the initial PCP visit when the NBS results and plan of care were discussed. Evaluation of the planned web portal was permanently delayed related to change in statewide policies; thus, a standalone website was developed using Agency for Health Care Research and Quality’s patient education material tool for understandability and actionability of both patient handouts and web portals. Physician actionable NBS handouts were also developed. Formative evaluation using experts’ input, one-to-one trials and small group trials of the handouts for the site were completed with minor revisions made to the portal.

The formative evaluation using the simple survey tool would have provided any additional portal changes required. Strengths of the study to include survey response rates, rigor of the comments by both parents and PCPs as well as constructive feedback from NBS experts are highlighted. The weakness is the lack of having a final participant group identified or available related to local NBS policies. Recommendations for future research are highlighted as well as discussion of changes in federal policy that will now allow further NBS research without the limitations once imposed.

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