Self-help for sickle cell diseases in African American communities

Results of a 5-year formulative evaluation study on sickle cell self-help groups are presented. Sickle cell disease (SCD) is a chronic genetic disease that primarily affects African Americans in the US. The outcomes of the study provide an opportunity to discuss the participation of African Americans in self-help groups. In 1992, contact was made with 134 groups representing 31 states, the District of Columbia, and one province of Canada. This represents all sickle cell groups known to exist in the US. Results show that 20% of the groups existed for more than 10 years, including one group that started 23 years ago. Since 1985, a steady, yearly growth rate of 13.4% has been calculated. Clearly, African Americans have been in and continue to join self-help groups. Continued research with these groups is needed to augment the current formative evaluation study.