A lay educator approach to sickle cell disease education

Area of Science:

• Public Health
• Genetics Education
• Community Outreach

Background:

• Awareness of sickle cell disease (SCD) has grown among Black Americans over 20 years.
• Despite increased awareness, accurate and meaningful knowledge about SCD remains limited.
• Existing awareness has not demonstrably improved informed parenting, support for affected families, youth genetic health advice, or countered historical misinformation.

Purpose of the Study:

• To describe a community-based demonstration project for sickle cell disease education.
• To explore methods for sharing SCD knowledge within diverse community networks.
• To detail the process of training lay educators for community-level SCD information dissemination.

Main Methods:

• Shared responsibility for SCD education with community organizations and members representative of the demographic and cultural profile.
• Established a network of religious, civic, fraternal, and social organizations to disseminate knowledge.
• Conducted needs assessment, recruitment, and training for lay SCD educators, and evaluated their initial role.

Main Results:

• Meaningful knowledge about sickle cell disease was vested within a network of community organizations.
• A process for training lay educators was developed and initiated.
• The demonstration highlighted the potential for community-led SCD education.

Conclusions:

• Community-based approaches are effective for disseminating accurate sickle cell disease information.
• Engaging diverse community organizations and lay educators can improve knowledge and support for SCD.
• Further development and evaluation of lay educator roles are needed for sustained impact.