Formative research to promote lupus awareness and early screening at Historically Black College and University (HBCU) communities in South Carolina

BACKGROUND: Systemic lupus erythematosus or lupus is a severe chronic autoimmune disorder that disproportionately impacts young African Americans. Increasing lupus awareness in this high-risk group may be an effective approach to ultimately improving lupus outcomes. To begin to address this disparity, this report describes qualitative data to be utilized in the development of a campaign to enhance awareness of lupus on Historically Black Colleges and University (HBCU) campuses. METHODS: Two focus groups (N = 14) were held with African American students in the network of HBCU’s in South Carolina to examine perspectives of focus group participants on knowledge, awareness, and experiences with lupus. RESULTS: Five key emergent themes included: (1) Lupus Knowledge and Awareness, (2) Barriers for Not Seeking Healthcare, (3) Fatalism for Disease Burden, (4) Lifestyle Debilitation, and (5) Elevation of Education and Advocacy for Lupus. Additionally, five key recommendations emerged to improve lupus awareness and support, including: (1) remaining positive, (2) developing a supportive network, (3) the importance of increasing advocacy efficacy, and (4) messaging strategies around lupus, and (5) providing education to foster knowledge around the clinical impacts of lupus. CONCLUSION: Participants in our study stressed the necessity of lupus education and awareness among African American youth and expressed the desire for resources that would enable them to advocate for themselves and their families. Given the early age of onset for lupus, it is therefore vital to include African American youth in increasing education and awareness about lupus. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s41927-022-00323-6.