Treating Systemic Lupus Erythematosus (SLE): The Impact of Historical Environmental Context on Healthcare Perceptions and Decision-Making in Charleston, South Carolina

Wendy Rodgers, Edith M. Williams, Brittany L. Smalls, Tyler Singleton, Ashley Tennessee, Diane Kamen and Gary Gilkeson
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Wendy Rodgers: Division of Rheumatology and Immunology, Department of General Internal Medicine, Medical University of South Carolina, 96 Jonathan Lucas Street, Charleston, SC 29425, USA
Edith M. Williams: Department of Public Health Sciences, Medical University of South Carolina, 135 Cannon Street, Suite CS303D, Charleston, SC 29425, USA
Brittany L. Smalls: Department of Family and Community Medicine, University of Kentucky College of Medicine, 2195 Harrodsburg Road, Lexington, KY 40504, USA
Tyler Singleton: Department of Public Health Sciences, Medical University of South Carolina, 135 Cannon Street, Suite CS303D, Charleston, SC 29425, USA
Ashley Tennessee: College of Health Professions, Medical University of South Carolina, 151-A Rutledge Avenue, Charleston, SC 29403, USA
Diane Kamen: Division of Rheumatology and Immunology, Department of General Internal Medicine, Medical University of South Carolina, 96 Jonathan Lucas Street, Charleston, SC 29425, USA
Gary Gilkeson: Division of Rheumatology and Immunology, Department of General Internal Medicine, Medical University of South Carolina, 96 Jonathan Lucas Street, Charleston, SC 29425, USA

IJERPH, 2020, vol. 17, issue 7, 1-10

Abstract: Introduction: Over 400,000 slaves were taken from Africa and brought to Charleston, South Carolina, as part of the transatlantic slave trade during the 18th and 19th centuries. Due to these negative historical events, the healthcare of African Americans in Charleston may be compromised in regard to chronic illnesses and other conditions affecting minorities, such as lupus. Materials and Methods: The current study used an ethnographic approach to obtain the perspectives of lupus patients with the goal of identifying gaps within current research. In addition to patient perspectives, the geographical location of Charleston, South Carolina was considered through inquiries around culture, community, advocacy, and client/patient interaction to establish a narrative for the themes that emerged. Results: The eleven major themes identified were connectedness, knowledge, experience with lupus, compliance, clinical trial participation, career and planning for the future, visits, access to resources, lifestyle, transition from child to adult care, and an overarching theme of self-management. Conclusion: Understanding healthcare perceptions and decision-making among culturally diverse populations, particularly those who have been defined by centuries of substandard care, marginalization, exploitation, and distrust, is critical to the development of culturally tailored interventions designed to improve patient outcomes and reduce health disparities.

Keywords: community-based research; cultural context; lupus (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2020
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