DOI: 10.1177/09612033231220168 ISSN: 0961-2033

A qualitative study on opportunities to improve research engagement and inclusion of Black adults with systemic lupus erythematosus

Johari Summerville, Nikki Farahani, Bhaavna Yalavarthi, Deena Aboul-Hassan, Sia Rajgarhia, Lillian Z Xiao, Christine Yu, Daniel J Clauw, Joanne M Kahlenberg, Melissa DeJonckheere, Rachel S Bergmans
  • Rheumatology

In response to racial inequities in systemic lupus erythematosus (SLE), we aimed to identify practical recommendations for increasing engagement and inclusion of Black adults in SLE research. We used a qualitative, interpretive description approach and recruited 30 Black adults diagnosed with SLE in Michigan to participate in semi-structured interviews. Theme development focused on what factors influenced research perceptions and how research did not meet participant needs and expectations. We developed five main themes: (1) Ethical and equitable research. Participants shared how the impacts of past and present-day racism impacted their willingness to participate in research. (2) Trusting researchers to conduct studies and translate findings to health care. Participants had concerns related to researcher intentions and expressed the importance of communicating research outcomes to participants and translating findings to health care. (3) Drug trial beneficence. When considering drug trials, several people did not consider the potential benefits worth the risk of side effects, and some said they would need to consult with their doctor before agreeing to participate. (4) Altruism. Participants explained how the desire to help others was a motivating factor for participating in research and donating biological samples. (5) Research priorities. Participants described a need for better treatments that value their overall health and well-being. Findings indicate that researchers can center the perspectives of Black people with SLE across the research life cycle—beyond a focus on adequate racial diversity among study participants.

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