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.
| Original language | English |
|---|---|
| Article number | 2285 |
| Journal | International Journal of Environmental Research and Public Health |
| Volume | 17 |
| Issue number | 7 |
| DOIs | |
| State | Published - Apr 1 2020 |
Bibliographical note
Publisher Copyright:© 2020 by the authors. Licensee MDPI, Basel, Switzerland.
Funding
Funding: This project was supported by the South Carolina Clinical and Translational Research (SCTR) Institute, with an academic home at the Medical University of South Carolina CTSA, NIH/NCATS grant number UL1 TR001450 and the Rheumatology and Immunology MCRC NIH/NIAMS grant number AR062755. Funding was also provided in part by the South Carolina Honors College Apprentice Exploration Scholars Program, the Ronald E. McNair Postbaccalaureate Achievement Program, and the Office of Undergraduate Research Magellan Guarantee. The contents are solely the responsibility of the authors and do not necessarily represent the official views of the NIH, NIAMS, or NCATS, and funding agencies had no involvement in study design, collection, analysis and interpretation of data, manuscript development, or in the decision to submit the manuscript for publication. This project was supported by the South Carolina Clinical and Translational Research (SCTR) Institute, with an academic home at the Medical University of South Carolina CTSA, NIH/NCATS grant number UL1 TR001450 and the Rheumatology and Immunology MCRC NIH/NIAMS grant number AR062755. Funding was also provided in part by the South Carolina Honors College Apprentice Exploration Scholars Program, the Ronald E. McNair Postbaccalaureate Achievement Program, and the Office of Undergraduate Research Magellan Guarantee. The contents are solely the responsibility of the authors and do not necessarily represent the official views of the NIH, NIAMS, or NCATS, and funding agencies had no involvement in study design, collection, analysis and interpretation of data, manuscript development, or in the decision to submit the manuscript for publication. We would like to thank the African-American women who participated in this study for their time and for sharing their stories.
| Funders | Funder number |
|---|---|
| MCRC NIH | |
| MCRC NIH/NIAMS | |
| Medical University of South Carolina CTSA | |
| NIH NCATS | |
| Office of Undergraduate Research Magellan Guarantee | |
| South Carolina Clinical and Translational Research Institute, Medical University of South Carolina | |
| South Carolina Honors College Apprentice Exploration Scholars Program | |
| National Institutes of Health (NIH) | |
| National Institute of Arthritis and Musculoskeletal and Skin Diseases | P60AR062755 |
| National Institute of Arthritis and Musculoskeletal and Skin Diseases | |
| National Center for Advancing Translational Sciences (NCATS) | UL1 TR001450 |
| National Center for Advancing Translational Sciences (NCATS) | |
| Medical University South Carolina |
Keywords
- Community-based research
- Cultural context
- Lupus
ASJC Scopus subject areas
- Pollution
- Public Health, Environmental and Occupational Health
- Health, Toxicology and Mutagenesis