by La’Shardae Scott, DSW, and Jasmine Cohen-Young, DSW, LCSW
As a school social worker, you play a crucial role in ensuring that all students have the support they need to succeed. When it comes to students with sickle cell disease (SCD), your role becomes even more vital. Sickle cell disease is a genetic blood disorder that can cause severe pain, fatigue, and other complications, which can significantly impact a student's academic performance and overall well-being (CDC, 2024). In this feature, we'll explore practical strategies, ways to inform school personnel about the diagnosis, and tips for supporting students with SCD who may be frequently absent as a result of pain episodes.
Understanding Sickle Cell Disease
Before diving into the strategies, it's essential to have a basic understanding of SCD. Sickle cell disease affects the shape of red blood cells, causing them to become rigid and shaped like a crescent or sickle. These misshapen cells can block blood flow, leading to pain episodes known as sickle cell crises, as well as other complications like anemia, infections, and organ damage. These health challenges can result in frequent hospitalizations and absences from school, making academic support and understanding from school staff crucial.
Building a Supportive Environment
Creating a supportive environment for students with SCD starts with education and awareness. Here are some steps you can take to build a knowledgeable and empathetic school community.
1. Educate School Personnel
Informing teachers, administrators, and other school staff about SCD is the first step toward creating an understanding environment. Consider organizing a professional development session focused on the basics of SCD, its impact on students, and how staff can support affected students. Use resources from reputable organizations like the Centers for Disease Control and Prevention (CDC) and the Sickle Cell Disease Association of America (SCDAA), or partner with local Community Based Organizations (CBOs) to provide accurate information.
2. Develop an Individualized Health Plan (IHP)
Work with the school nurse and the student's healthcare provider to develop an Individualized Health Plan (IHP) tailored to the student's specific needs. The IHP should outline the student's medical requirements, potential triggers for pain episodes, emergency contact information, and any necessary accommodations, such as extra time for assignments or rest periods during the day.
3. Promote Open Communication
Encourage open communication between the student, the family, and school staff. Regular check-ins can help identify any issues early and ensure that the student's needs are being met. Consider setting up a communication plan that includes regular meetings with the student's parents, guardians, teachers, and healthcare providers.
Supporting Students During Absences
Frequent absences because of pain episodes or medical appointments are a common challenge for students with SCD. Here are some strategies to help these students stay on track academically and feel supported during their time away from school.
1. Create a Flexible Learning Plan/ 504 Plan
Develop a flexible learning plan that accommodates the student's medical needs. This plan might include options for remote learning, extended deadlines, and alternative assignments that can be completed at home. Work with the student's teachers to ensure that they understand the importance of flexibility and are willing to adjust their expectations accordingly.
2. Provide Academic Support
Consider arranging for a tutor or academic coach to help the student keep up with studies. This support can be especially beneficial during extended absences. Tutors can provide one-on-one assistance, helping the student grasp difficult concepts and stay engaged with coursework.
3. Implement a "Buddy System"
Pair the student with a reliable classmate who can take notes, collect assignments, and share important information when the student is absent. This buddy system can help the student feel connected to the classroom and reduce the stress of falling behind.
Emotional and Social Support
Living with SCD can be emotionally challenging for students. It's essential to provide emotional and social support to help them cope with their condition and thrive in school.
1. Foster a Supportive Peer Network
Encourage the formation of a peer support group for students with chronic illnesses. This group can provide a safe space for students to share their experiences, offer mutual support, and build friendships. Having a network of peers who understand their challenges can help students feel less isolated (Scott, 2024).
2. Provide Counseling Services
Offer counseling services to help students with SCD manage the emotional impact of their condition. Counseling can address issues such as anxiety, depression, and social isolation. Regular sessions with a school counselor or psychologist can provide a valuable outlet for students to express their feelings and develop coping strategies.
3. Raise Awareness and Reduce Stigma
Work to raise awareness about SCD within the school community to reduce stigma and promote understanding. Consider organizing events or activities during Sickle Cell Awareness Month (September) to educate students and staff about the disease. Creating an inclusive environment where students feel understood and accepted can have a significantly impact on their emotional well-being.
Strategies in Action
To illustrate how these strategies can be implemented, let’s consider some hypothetical scenarios.
Scenario 1: Educating School Staff
Imagine a student named Maya who has SCD. She often misses school when she has pain episodes and hospital visits. As a school social worker, you arrange a professional development session for Maya’s teachers and the school staff. During the session, you provide a comprehensive overview of SCD, address Maya's individual requirements, and present the IHP or 504 Plan to cater to her specific needs and ensure academic success while minimizing the anxiety of falling behind on school assignments. Teachers leave the session with a better understanding of Maya’s condition and feel more prepared to support her.
Scenario 2: Emotional Support
Eric, a student with SCD, struggles with feelings of isolation and anxiety. You introduce him to a peer support group for students with chronic illnesses. Through this group, Eric forms friendships with other students who understand his challenges. Additionally, Eric begins regular counseling sessions to develop coping strategies and manage anxiety. Over time, Eric feels more connected and supported within the school community.
Conclusion
Supporting students with sickle cell disease requires a comprehensive approach that addresses their academic, emotional, and social needs. By educating school personnel, developing individualized health plans or 504 plans, providing flexible learning options, and offering emotional support, school social workers can create a nurturing environment where students with SCD can thrive. Your role is vital in ensuring that these students have the tools and resources they need to succeed despite the challenges posed by their condition.
References
Centers for Disease Control and Prevention. (2024). Sickle cell disease. https://www.cdc.gov/ncbddd/sicklecell/index.html
Sickle Cell Disease Association of America. (n.d.). About sickle cell disease. https://www.sicklecelldisease.org/about-scd/
Scott, L. (2024). Transition of sickle cell disease patients: An expansive conceptualization framework. 1(Supplement_1). https://doi.org/10.1093/jscdis/yoae002.016
Dr. L'Shardae Scott
La’Shardae Scott, DSW, is President and CEO of the Scott Center for Observation Treatment and Transition, where she spearheads initiatives to address health disparities and enhance pediatric clinical services while providing comprehensive care and support to individuals and families affected by sickle cell disease. She is also an instructor at the University of Kentucky.
Dr. Jasmine Cohen-Young
Jasmine Cohen-Young, DSW, LCSW, is an accomplished expert in clinical military behavioral health social work and sports social work. She founded Mindz Matter, Inc., a nonprofit dedicated to closing mental health gaps for youth and college athletes, focusing on underserved Black and Brown communities. She is also an instructor at the University of Kentucky.