XULA 2026 | 09.09.01 - Carlene Fider скачать в хорошем качестве

XULA 2026 | 09.09.01 - Carlene Fider

Abstract #09.09.01 — Multilevel Barriers to Reproductive Health in Sickle Cell Author(s) :: Lisa Roberts, DrPH, MSN, FNP-BC, CHES, FAANP, FAAN; Safiye Sahin, Ph.D., RN; Carlene Fider, PhD; Susanne Montgomery, PhD Author(s) Affiliation(s) :: Loma Linda University School of Nursing (RL); Loma Linda University School of Nursing (SS); Loma Linda University School of Nursing and Adult Sickle Cell Services (CF); Loma Linda University School of Interdisciplinary Studies (SM) PURPOSE To identify multilevel barriers affecting reproductive health among people with Sickle Cell Disease or Trait (PwSCD/T), caregivers, and healthcare providers (HCPs). METHODS Semi-structured interviews were conducted with PwSCD/T (n=15), caregivers (n=7), and HCPs (n=5) at a U.S. sickle-cell clinic and community program. Transcripts were analyzed using thematic content analysis guided by a socio-ecological model (Bronfenbrenner, 1977). RESULTS/EXPECTED RESULTS Participants described substantial multilevel barriers. Individual-level barriers included delayed diagnosis (“I found out pretty much between middle and high school. So, in the eighth grade, summer.”) and experiences shaped by immigration or cultural background (“I was born in Nigeria. I lived there until I was 14. And I lived with sickle cell with a lot of pain, not knowing what it was. They kept telling us it was malaria. Not until I got to the U.S. that I knew what it was”). Community and school-level barriers included stigma (“Friends thought even by hugging me you’d get the disease”) and educators’ lack of understanding (“My teacher compared sickle cell to flu pain”). Healthcare-system barriers included inadequate provider knowledge (“They didn’t tell us to follow up… they just said she has the trait”), inconsistent assessment, and lack of genetic counseling (“If 95% knew their status in high school, outcomes would be different”). Policy-level barriers included insurance gaps and financial strain (“when you're filling out a job application and then ask you if you have a disability, sickle cell is listed, … when you fill out online for assistance, for financial assistance, sickle cell is not listed”). DISCUSSION/CONCLUSION These findings expand current understanding by illustrating how systemic and social forces shape reproductive health knowledge in SCD/T. Addressing these challenges requires earlier RP education, SCD/T-specific counseling tools, culturally grounded community partnerships, and policy efforts ensuring equitable access to RP information for PwSCD/T. Grant Support :: GRANT Funding: (1) This research was funded by Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number UR6MC50347‐01‐00 Maternal Health Research Network (MH‐RN) for MSIs‐‐Research Awards to LOMA LINDA UNIVERSITY, Loma Linda, California. To stay up-to-date with more health equity news, follow: #XULACon #1JGCollabs