Student perspectives on managing sickle cell disease at school

Area of Science:

• Pediatric Health
• Chronic Illness Management
• Educational Psychology

Background:

• Sickle Cell Disease (SCD) significantly impacts children's lives, including their school experiences.
• Understanding student perceptions is crucial for effective educational support.

Purpose of the Study:

• To identify perceptions of children with sickle cell disease (SCD) regarding their school environment.
• To explore children's views on teacher efficacy in managing SCD-related issues at school.

Main Methods:

• Conducted semistructured interviews with 14 pediatric patients (ages 6-10) diagnosed with SCD.
• Utilized content analysis to identify themes from interviews concerning teacher understanding, communication, pain management, and absenteeism.
• Recruited participants from a specialized pediatric sickle cell disease clinic.

Main Results:

• Five key themes emerged: students' proactive management of SCD's impact, administrator support, communication needs, interference with school activities, and self-advocacy.
• Students recommended teacher assistance with activities, make-up work policies, empowerment, and in-school SCD episode management.

Conclusions:

• Children with SCD actively advocate for their educational needs.
• A significant perception exists that school personnel lack adequate knowledge of SCD management.
• A specialized handbook for teachers could address identified themes and improve support for students with SCD.