Lupus & antiphospholipid syndrome
A qualitative study on opportunities to improve research engagement and inclusion of Black adults with systemic lupus erythematosus
Authors' conclusion
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.
Study context
- Population
- Black adults diagnosed with systemic lupus erythematosus (SLE) in Michigan
- Participants
- 30 adults
- Outcome
- Factors influencing research perceptions and how research did not meet participant needs and expectations (practical recommendations for increasing engagement and inclusion of Black adults in SLE research)
Methodological detailsinterpretive description approach, semi-structured interviews
- Interpretive description approach
- Semi-structured interviews
Main finding
As reported in the abstract
Five main themes
- (1) Ethical and equitable research: impacts of past and present-day racism affected willingness to participate in research
- (2) Trusting researchers to conduct studies and translate findings to health care: concerns about researcher intentions; importance of communicating research outcomes to participants and translating findings to health care
- (3) Drug trial beneficence: several did not consider potential benefits worth the risk of side effects; some would need to consult their doctor before agreeing to participate
- (4) Altruism: desire to help others motivated participation in research and donation of biological samples
- (5) Research priorities: need for better treatments that value overall health and well-being
Original publication
A qualitative study on opportunities to improve research engagement and inclusion of Black adults with systemic lupus erythematosus. Lupus. Published 4 December 2023. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →