Division of Rheumatology and Immunology, Department of General Internal Medicine, Medical University of South Carolina, 96 Jonathan Lucas Street, Charleston, SC 29425, USA.
Department of Public Health Sciences, Medical University of South Carolina, 135 Cannon Street, Suite CS303D, Charleston, SC 29425, USA.
Int J Environ Res Public Health. 2020 Mar 28;17(7):2285. doi: 10.3390/ijerph17072285.
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.
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.
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.
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.
在 18 世纪和 19 世纪的跨大西洋奴隶贸易中，超过 40 万名奴隶被从非洲带到南卡罗来纳州的查尔斯顿。由于这些负面的历史事件，查尔斯顿的非裔美国人的医疗保健可能会受到影响，特别是在慢性病和其他影响少数族裔的疾病方面，如狼疮。
本研究采用民族志方法来获得狼疮患者的观点，目的是确定当前研究中的差距。除了患者的观点外，还通过对查尔斯顿，南卡罗来纳州的文化、社区、宣传和客户/患者互动的调查，考虑了该地区的地理位置，以建立一个主题的叙述，从而确定出现的主题。
确定了十一个主要主题，包括联系、知识、狼疮经历、合规性、临床试验参与、职业和未来规划、就诊、获取资源、生活方式、从儿童到成人护理的过渡，以及自我管理的总体主题。
了解文化多样化人群的医疗保健观念和决策，特别是那些几个世纪以来一直处于低标准护理、边缘化、剥削和不信任状态的人群，对于制定文化上合适的干预措施以改善患者的结果和减少健康差异至关重要。
