Most individuals with sickle cell disease and sickle cell trait are diagnosed at birth with universal newborn screening (NBS). However, there is considerable variability in how families receive this information from state departments of health follow-up programs, primary care providers, and even community-based organizations. There is often a gap in knowledge and self-confidence in sharing information, as there are no certifications or evidence-based best practices for NBS coordinators. There are also cultural and social determinants of health factors that should be considered when providing this information to families and should be integrated into NBS training. 

The Cincinnati Comprehensive Sickle Cell Center has hosted a Hemoglobinopathy Counselor Training Course for over 20 years, and it is one of the only programs in the country. There are several gaps in knowledge and comfort levels among NBS coordinators that have identified a clear need for an interactive training platform and companion materials to educate families.

Understanding the Problem

The team conducted 10 interviews with partners, Newborn Screening Coordinators, and parents to understand the current landscape of sickle cell trait (SCT) education. To complement the primary research, the team benchmarked current sites, videos, websites, handouts, and physical kits that explain SCT. In addition, after gaining functional literacy the team began visualizing maps to help partners and LWC staff gain a contextual understanding of sickle cell trait education. 

Developing A Style

From the research, the team synthesized educational content necessary for NBSCs and families. NBSCs will require a guidebook, standard operating procedures, and a counseling presentation for families. Meanwhile, families need a one-pager and video animations that highlight key information about sickle cell trait. To achieve this, the team brainstormed ideas for font, color, and character style that could be uniformly applied across the educational materials. Throughout the process, the LWC team collaborated with the partner team on educational content, storyboard order, and the selection of the appropriate style to proceed with.

After conducting interviews with NBSCs, families, and CCHMC trainers, the team mapped out the entire process, spanning from the mother's pregnancy to parents receiving a sickle cell trait counseling session. This comprehensive map outlines the journeys of both educators and families, serving as a valuable guide. It provides a clear roadmap for NBSCs and parents, offering insights into the sequential steps of the process.

Telling the Story

During the refinement phase, the team organized 8 validation sessions involving NBSCs, families, and LWC team members. Participants were prompted to highlight their main takeaways from the slideshow, confirming the team’s success in conveying key messages about sickle cell trait: clarifying that it is not sickle cell disease, it is inherited, and cannot transform into the disease. Additionally, the team consulted with CCHMC hemoglobinopathy trainers to validate the content for the NBSC SOP and guidebook.