Informational, Support, and Educational Needs of Parents of Children with Sickle Cell Trait.

Background: Given that sickle cell disease (SCD) is a heritable condition, it is important for people who have sickle cell trait (SCT) to be aware of their status and understand their risks. This paper explores the information, education, and support needs of families whose child screens positive for SCT through newborn screening.

Methods: We interviewed multiple types of key informants, including family members, healthcare providers, and representatives from national SCD organizations and community-based organizations, and state newborn screening programs.

Results: We found that notification and counseling related to SCT are often deprioritized and less timely than for SCD. Few systems track follow-up for these infants and ensure that the results reach families as SCT does not require immediate treatment. Parents reported receiving minimal follow-up and health-related information from healthcare providers.

Conclusions: Increasing patient-provider communication about SCT and connecting families to services could have a lasting impact on generational health.