Abstract
Systemic lupus erythematosus (lupus) is a chronic autoimmune disease that predominantly affects women of childbearing age, and has a greater burden in non-Caucasian ethnic groups in both incidence and severity. Women with lupus are thus left to navigate issues relating to chronic disease management and family planning simultaneously. Pregnancy planning and contraception management in lupus is not a one-size-fits-all picture; underlying lupus characteristics and comorbidities necessitate an individualized approach. This is especially crucial for the Hispanic population, which has more severe lupus compared to the non-Hispanic White population, as well as a higher rate of unplanned pregnancies.
Qualitative research, which is non-numeric research that is predicated on collecting rich, patient-reported data that describes patients’ lived experiences, can supplement quantitative data and form the basis for culturally appropriate interventions to improve patient care. In this study we propose a qualitative data collection from two Hispanic lupus populations to better understand their experiences with reproductive health management and decision making.
We propose a two-part qualitative data collection that is based upon understanding the experiences of Hispanic patients with lupus as it relates to reproductive health conversations in the outpatient rheumatology clinic setting (Aim 1), as well as sociocultural influences on reproductive health decisions outside of the clinic setting (Aim 2). We will recruit patients from both the Los Angeles General Medical Center outpatient rheumatology clinic (which is 85% Hispanic) as well as from Lupus LA, a national lupus support network based in Los Angeles. Established qualitative research techniques will be used to analyze the data to determine patient-reported themes that describe how Hispanic patients with lupus experience reproductive health care. This data will be used to create future interventions for improving upon the care of this high-risk group and form best practice standards.