Deena Aboul-Hassan
Pronouns: she/her
Research Mentor(s): Rachel Bergmans
Research Mentor School/College/Department: /
Program: RS
Session: Session 4 (1:40pm – 2:30pm)
Authors: Deena Aboul-Hassan, Johari Summerville, Bhaavna Yalavarthi, Nikki Farahani, Christine Yu, Lillian Z. Xiao, Sia Rajgarhia, Daniel J. Clauw, J. Michelle Kahlenberg, Melissa DeJonckheere, Rachel S. Bergmans
Abstract
BACKGROUND: Systemic lupus erythematosus (SLE) is a disabling disease with relapsing-remitting pain and fatigue episodes that can make day-to-day activities challenging. SLE is also more common among Black women than other population groups. In the USA, Black communities and Black women are marginalized within society and employment settings due to systemic racism and sexism. Characterizing the experiences of Black adults with SLE may inform care approaches and public policies that can alleviate inequities within patients’ lives. AIM: We aim to characterize the intersection of SLE with interpersonal relationships and professional roles among Black adults. METHODS: We are using an interpretive description approach, involving one-on-on semi-structured interviews and focus groups with Black adults who have SLE. The interview guide and focus groups included topics related to diagnosis, the impact of symptoms on day-to-day life, and symptom management. We analyzed the de-identified transcripts using inductive, thematic analysis to create a preliminary coding scheme. Our theme development focuses on how SLE intersects with interpersonal relationships and professional roles. RESULTS: We completed 30 interviews (96% female, mean age = 41 years) and 7 focus groups (n=6-8). Our preliminary coding scheme included 3 categories: (1) Connecting with other people who have lupus; (2) Friends and family; and (3) Employment. NEXT STEPS: The next step is using the preliminary coding scheme to finalize our main themes within the semi-structured interviews. Once the codebook is complete, we will apply it to the focus group transcripts so that we can include additional examples and context for the main themes. CONCLUSIONS: Our findings reveal that SLE symptoms affect the capacity to engage in interpersonal relationships and professional roles. Additionally, the nature of relationships with friends and family and the extent of employer accommodations profoundly impacts patients’ lives.
