Identifying Determinants of Sickle Cell Disease Knowledge, Awareness, and Management in St. Louis Area School Districts

Sickle cell disease (SCD) is one of the most prevalent genetic conditions in the world, primarily affecting individuals of African descent. As a result of recurrent pain episodes and hospitalizations, students with SCD commonly experience intellectual and academic challenges making them more likely to experience reduced academic achievement, grade retention, higher drop-out rates, and lower graduation rates. Despite this, school personnel are often insufficiently prepared to provide effective supports for students with SCD. This may be due in part to poor awareness or understanding of the cognitive and academic effects of SCD among school personnel and because of the challenges involved in connecting school and health data and information in meaningful ways. The study sought to (1) establish and engage a Collaborative Team to improve our understanding of the existing resources in place to support school-aged students with SCD, and to (2) conduct a needs assessment to identify key priorities and determinants to SCD knowledge, awareness, and management among school administrators and key personnel.

Using the Modified Collaborative Implementation Planning Framework, we established and engaged a 9-member collaborative team with representation from six different school districts, two community-based organizations who provide school health services, and our statewide school nurses association. This collaborative team engaged in a series of five meetings between December 2023 and June 2024 to develop a logic model and conduct a needs assessment to identify determinants to SCD knowledge, awareness, and management among school administrators and key personnel, parents of students with SCD, and students with SCD. Needs assessment components (an electronic survey and focus group/interview protocols) were developed using the Exploration, Preparation, Implementation, and Sustainment Framework.

A total of 408 individuals representing approximately 50 different school districts participated in the electronic survey (395 adults and 13 minors with SCD). Of the 395 adult electronic survey participants, 48.4% were school nurses (N=191), 22.5% were classroom teachers (N=89), 15% were other school personnel (i.e., school administrators, N=35), and 9.1% were parents or caregivers of students with SCD (N=36). In addition, 4 students with SCD participated in the adult electronic survey because they were 18 years of age or older. The 13 minor students with SCD participated in the survey for minors and represented grades 6-12. The majority of survey respondents were female (89.6% adults, N=354; 69.2% minors, N=9), all minor respondents reported their race as Black, and 29.9% of the adult respondents reported their race as Black (N=118). A total of 39 individuals who participated in the electronic survey also participated in focus groups or interviews, including parents/caregivers (N=13), school nurses (N=7), classroom teachers (N=10), other school personnel (N=6), and students (N=3). A majority of both minor students and adults identified ensuring students with SCD have academic supports (92.3% students, 78.6% adults) and improving communication and care coordination between families, providers, and schools (84.6% students, and 82.4% adults) as key determinants impacting outcomes for youth with SCD. Increasing SCD knowledge and awareness was another key determinant identified by 87.7% adults and 69.2% minor students, as was building trust between parents and schools (71.3% adults and 69.2% minor students). Improving district SCD policy and procedure implementation was identified as a key determinant by 66% of adults and 53.8% of minor students. Key themes emerging from focus groups and interviews included trust or building rapport to improve identification of students with SCD; improving knowledge and awareness and the provision of supports for school staff, parents, families, and students with SCD and their peers; and developing accessible and effective communication materials and systems to support communication between families and schools.

Overall, results indicate that comprehensive and multi-pronged approaches incorporating strategic communication plans, care coordination, training, counseling, and district wide policy and procedure implementation guidelines are necessary to support school-based personnel and families, and to improve outcomes for students with SCD.