2024 Early Hearing Detection & Intervention Conference
March 17-19, 2024 • Denver, CO
| Virtual learning, real life outcomes: Using Digital education to democratize engagement opportunities
Virtual learning, real life outcomes: Using Digital education to democratize engagement opportunities
The Newborn Screening Family Education Program is dedicated to developing opportunities for all families to learn about newborn screening as well as training and educational resources that build confidence for families to become leaders in the newborn screening system. We focus on supporting families through their newborn screening journeys and create resources that support families before, during and after screening.
To date we have trained and educated over 3,000 families through a combination of efforts including, online training & education modules (available in both English and Spanish), online video education, and targeted initiatives to raise awareness and knowledge of newborn screening during the prenatal period. Additionally, the program has developed an extensive partnership network of 45 organizational and individual partnership relationships which are integral to the dissemination and connection to families.
This poster will reflect on the lessons learned and outcomes of both the family and provider learners who have enrolled in the Navigate Newborn Screening Online Curriculum. This free online learning module was developed based on feedback from over 800 families and launched in February 2020. Each year, the curriculum saw increased enrollment from both parents, family member and health professionals interested in learning more about the newborn screening system. This poster will highlight some of the key takeaways including:
Over 100 families completed a 5 part online training
Health care professionals and others comprised approximately 28% of total enrollment.
90% of participants indicated the training was a good use of their time.
This network of trained families who completed the online training provided a foundation of interested family leaders who were also contacted and recruited to participate in additional training and leadership opportunities such as community discussion groups and the Navigate NBS Ambassador Program. This model has been used to increase the number of engaged family leaders in the newborn screening system.
- Share dissemination strategies and partnership networks utilized to reach families from medically underserved communities
- Discuss the strategies used to develop an online training module for families to deepen their understanding of the newborn screening system .
- Provide resources for state programs and other community partners to implement online learning opportunities for families.
Presentation:
3478265_16376MariannaRaia.pdf
Handouts:
Handout is not Available
Transcripts:
CART transcripts are NOT YET available, but will be posted shortly after the conference
Presenters/Authors
Marianna Raia
(Primary Presenter), Expecting Health, MRAIA@EXPECTINGHEALTH.ORG;
Marianna Raia is the Associate Director of Programs at Expecting Health and the program manager for the HRSA funded Newborn Screening Family Education Program. With nearly 15 years of experience as a genetic counselor working directly with families, providers, laboratories and advocacy groups in the rare disease community, Marianna is dedicated to helping patients, providers, and families understand how genetic information can empower you to make decisions about your health and the health of your family. She is committed to improving the experiences of families on their newborn screening and health care journeys.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
Financial relationship with Expecting Health.
Nature: This project was funded by the Health Resources and Services Administration and is currently maintained by Expecting Health. .
Nonfinancial -
No relevant nonfinancial relationship exists.