Self-Help for Sickle Cell Disease in African American Communities

Abstract

This article presents the results of a 5-year formative evaluation study on sickle cell self-help groups. Sickle cell disease is a chronic genetic disease that primarily affects African Americans in the United States. The outcomes of this research provide an opportunity to discuss the participation of African Americans in self-help groups. This study is the first known to focus exclusively on self-help groups for African Americans. 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 United States. Data were collected on 123 of the 134 groups. The 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.

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