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

Int J Environ Res Public Health. 2020 Mar 28;17(7):2285. doi: 10.3390/ijerph17072285.

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.

Publication types

  • Historical Article
  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Black or African American
  • Child
  • Decision Making*
  • Delivery of Health Care / history*
  • Female
  • Health Services Research
  • Healthcare Disparities / history*
  • History, 21st Century
  • Humans
  • Lupus Erythematosus, Systemic / ethnology
  • Lupus Erythematosus, Systemic / therapy*
  • Patient Participation
  • South Carolina
  • Transition to Adult Care