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Families need better information to navigate newborn screening. The Navigate Newborn Screening Program developed online modules, a prenatal program, and social media campaigns to improve family knowledge and confidence, especially for underserved communities.

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Area of Science:

  • Public Health
  • Health Communication
  • Genetics

Background:

  • Families face challenges accessing accurate information for newborn screening due to system limitations and resource constraints.
  • Effective family engagement in newborn screening is crucial for increasing knowledge and confidence, particularly in underserved communities.
  • Current newborn screening education often fails to meet the diverse needs of families, leading to gaps in understanding.

Purpose of the Study:

  • To describe and evaluate three strategies developed by the Navigate Newborn Screening Program to enhance family engagement and education in newborn screening.
  • To assess the success of online learning modules, a prenatal education pilot, and a social media campaign in reaching and educating families.
  • To present a model for bidirectional engagement to support scalable educational efforts for families and providers.

Main Methods:

  • Implementation of three distinct educational strategies: online learning modules, a prenatal education pilot program, and a social media awareness campaign.
  • Utilization of quality improvement methods and evidence-driven approaches to guide strategy development and implementation.
  • Evaluation of the strategies' effectiveness in reaching and educating families about the newborn screening system.

Main Results:

  • The three implemented strategies demonstrated promising practices in advancing awareness, knowledge, and self-efficacy among families navigating newborn screening.
  • These approaches showed particular success in reaching and educating families from medically underserved and underrepresented communities.
  • The program successfully engaged families, enhancing their understanding and confidence in the newborn screening process.

Conclusions:

  • The developed strategies offer effective models for improving family education and engagement in newborn screening.
  • Bidirectional engagement strategies are essential for scaling educational efforts and ensuring equitable access to information for all families.
  • Improving family knowledge and confidence through targeted educational interventions leads to better outcomes in the context of newborn screening.