P-094: EXPLORING SCHOOL LIVED EXPERIENCES OF SECONDARY STUDENTS WITH SICKLE CELL DISEASE THROUGH THEIR PARENTS’ LENS

Abstract

Purpose: The purpose of this qualitative study was to explore the academic and emotion of secondary students with sickle cell disease school experiences as their parents recalled them. Educators are responsible for ensuring access to quality education for all students. Students with disabilities have a legal right to a free appropriate public education under Section 504 and the Individualized Education Program (IEP). The chronic illness this research will focus on is children living with sickle cell disease. Sickle cell disease is an inherited blood disorder that causes severe pain episodes when sickled blood cells get stuck in blood vessels. To explore these experiences, the researcher employed a qualitative phenomenological approach to inquiry. The researcher also employed a social constructivism approach. Materials and methods: The study purpose was to investigate students’ academic and emotional school lived experiences through interviews and a focus group. The research method involved using the data from interviews, artifacts, and the focus group to analyze the parents’ experiences, background stories, and perspectives. The research method also included reviewing some parents’ artifacts, such as attendance records, grades, IEPs and 504 plans, and psychological evaluations to understand their educational attainment, absenteeism, and achievement. One participant shared the school attendance policy with the researcher as an additional artifact to provide additional insight into the phenomenon. Results: . The four themes that emerged were: (a) the need for a consistent approach by school staff, with awareness and understanding in an inclusive setting, (b) challenges faced by children with sickle cell disease in a school setting, (c) parents need for empowerment, and (d) need for adaptability in school culture and practices. The findings, results, and interpretations from this qualitative, phenomenological study support the need for increased awareness and support for secondary students with sickle cell disease as it relates to student achievement, emotion, and psychosocial challenges. Conclusion: Recommendation 1: Effective collaboration between schools and medical/psychosocial team Recommendation 2: Provide Targeted Professional Development Recommendation 3: Create Personalized Learning Options for Some Students with Sickle Cell Disease Recommendation 4: Promote Parent and Student Empowerment 1. Listen to mother’s story 2. Parent, Student and School Team Engagement Council 3. Parent Support Group 4. Review Hospital Homebound policy The authors do not declare any conflict of interest