A lay educator approach to sickle cell disease education.

Over the past two decades, the number of Black Americans aware of sickle cell disease has increased. However, knowledge of the existence of the disease, and the higher risk Black Americans face, has not resulted in a widely held pool of accurate and meaningful information. For instance, observers are far less certain that the observed increased awareness has contributed to the capacity to (1) make informed parenting decisions at the grass roots level, (2) provide appropriate support to individuals and families experiencing sickle cell disease, (3) advise youth on issues related to genetic health, and (4) displace the impact of miseducation that occurred in the 70's. In the demonstration described in this paper, responsibility for sickle cell disease education is shared with community organizations and community members who are broadly representative of the community's demographic and cultural profiles. Through this process, meaningful knowledge about sickle cell disease is vested within a network of religious, civic, fraternal and social organizations. Additionally, this paper discusses needs assessment, recruitment, training and project evaluation for four classes of lay sickle cell disease educators as well as the beginning phase of their lay educator role.