Using Critical Race Theory to Understand Trial Participation Among Black Individuals With Systemic Lupus Erythematosus: A Qualitative Study of Patients and Caregivers.
Adult
Black or African American
/ psychology
Aged
Boston
Chicago
Clinical Trials as Topic
Female
Focus Groups
Health Knowledge, Attitudes, Practice
/ ethnology
Humans
Lupus Erythematosus, Systemic
/ diagnosis
Male
Middle Aged
Motivation
Patient Selection
Qualitative Research
Race Factors
Racism
Trust
Journal
Arthritis care & research
ISSN: 2151-4658
Titre abrégé: Arthritis Care Res (Hoboken)
Pays: United States
ID NLM: 101518086
Informations de publication
Date de publication:
10 2021
10 2021
Historique:
received:
27
08
2020
accepted:
22
04
2021
pubmed:
12
5
2021
medline:
16
11
2021
entrez:
11
5
2021
Statut:
ppublish
Résumé
Black patients with systemic lupus erythematous (SLE) experience greater disease incidence and severity than White patients, and yet they are underrepresented in SLE clinical trials. We applied Critical Race Theory to qualitatively explore the influence of racism on the underrepresentation of Black patients in SLE clinical trials and to develop a framework for future intervention. We conducted focus group sessions in Chicago and Boston with Black adults (ages ≥18 years) with SLE and their caregivers. We queried the participants about their knowledge regarding clinical trials, factors that might motivate or hinder trial participation, and how race and experiences of racism might impact clinical trial participation. Focus group responses were transcribed verbatim and analyzed thematically. We held 4 focus groups (n = 31 participants); 20 participants had SLE, and 11 were caregivers. All participants were Black, 90% were women, and the mean age was 54 years. Qualitative analyses revealed several themes that negatively impact trial participation, including mistrust related to racism, concerns about assignment to placebo groups, strict study exclusion criteria, and SLE-related concerns. Factors that motivated trial participation included recommendations from physicians and reputable institutions, a desire to help the greater good, and culturally sensitive marketing of trials. Actions to improve clinical trial participation among Black individuals should focus on reframing how trial information is presented and disseminated and on reevaluating barriers that may restrict trial participation. Additionally, researchers must acknowledge and respond to the presence of racial bias in health care. Community-academic partnerships may help build trust and reduce fears of mistreatment among Black individuals with SLE.
Identifiants
pubmed: 33973413
doi: 10.1002/acr.24635
pmc: PMC8557360
mid: NIHMS1747298
doi:
Types de publication
Journal Article
Multicenter Study
Research Support, U.S. Gov't, P.H.S.
Langues
eng
Sous-ensembles de citation
IM
Pagination
1387-1395Subventions
Organisme : NIMHD NIH HHS
ID : U54 MD011227
Pays : United States
Organisme : U.S. Department of Health and Human Services
ID : 1 CPIMP181168-01-00
Organisme : NIMHD NIH HHS
ID : L60 MD014430
Pays : United States
Organisme : NIAMS NIH HHS
ID : K24 AR002138
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG015281
Pays : United States
Informations de copyright
© 2021, American College of Rheumatology.
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