Client-Directed Educational Material Needs across the Lifespan for Individuals Living with Sickle Cell Disease (SCD) and Parents of Children with SCD

Introduction: Sickle Cell Disease is one of the most common genetic disorders in the United States, affecting approximately 89,000 individuals. Efforts have been made to provide educational materials for individuals with SCD, focused primarily on early childhood. However, little is known about the actual use of these existing materials and the perceived gaps and needs of this population. Understanding the identified needs is especially important given the increased life expectancy of individuals with SCD. Therefore, the purpose of the study was to explore the educational and thereby provider support needs of individuals with SCD and children with SCD. Methods: Focus groups were conducted with 29 individuals across 5 states. Conversations were recorded, transcribed, and analyzed for themes. The questions centered on three distinct areas: informational support, information seeking behaviors, and unmet needs.

Results: Additional education needs exist for both populations. Adult consumers reported needing educational materials to assist romantic partners in understanding SCD, and informational support from providers on reproductive and family planning options. Parents of children with SCD cited needing materials that more accurately represent the diverse SCD population. Finally, both populations indicated needing more information on co-occurring health issues throughout the life span.

Conclusion: Discussion and recommendations include the development of new materials and methods to include individual consumers and family members in the effort in the course of practice and both long term and short term care.