A Newborn Screening Education Best Practices Framework: Development and Adoption

Abstract

Newborn screening is a process-based public health service. Newborn screening staff and families alike are essential to maintaining the timeliness of the screening process. Newborn screening education must be accurate and accessible. Past newborn screening conferences have highlighted gaps in best practice and evidence-based guidance on newborn screening education. Sharing successful strategies across programs mitigates the scarcity of resources by cutting costs and reducing the burden of work. These factors illustrate the need for an education framework to guide newborn screening education efforts. The Newborn Screening Education Best Practices Framework responds to these issues by outlining guidance for newborn screening education approaches. Experts in the fields of newborn screening, genetics, and bioethics as well as previous research on best practice guidelines have contributed to the development of this framework. The framework outlines a process for users to evaluate newborn screening education approaches as best practices. This framework reviews best practices using a two-step approach, looking at guiding questions, implementation of the newborn screening issue, and evaluation. The framework helps the user define the characteristics of the newborn screening issue, intended audience, and practical steps to implementation, and then decide whether or not it can be used as a best practice.

Keywords: best practices; health communication; health education; newborn screening; public health.

Figure 1

Newborn screening (NBS) Education Best Practices Guiding Questions. This figure shows the guiding questions of the NBS Education Best Practices Framework. Answering the guiding questions is the first step in using the framework. The answers to the guiding questions illustrate the core paradigms of the education approach, forming a map for users to work from in subsequent steps.

Figure 2

NBS Education Best Practices Flowchart. This figure shows the framework flowchart of the NBS Education Best Practices Framework. This flowchart takes the user through steps two and three of applying the framework. The flowchart highlights evaluative and implementation considerations. Users look at the answers to the guiding questions to walk through the flowchart.