Dissertation Research: Delayed Diagnosis: The Experience of Women with Systemic Lupus Erythematosus in Atlanta, Georgia

这篇论文的研究项目是由埃默里大学的一名文化人类学学生完成的，它将研究佐治亚州亚特兰大市不同种族的女性系统性红斑狼疮患者的不同经历。在美国，非裔美国女性患SLE的比例是白人女性的两倍，而且诊断延迟导致了过高的发病率和死亡率。该项目将研究导致非裔美国妇女延迟诊断的复杂过程。依靠所涉及的医疗行为的社会文化模型，学生将在三个方面检验解释种族延迟诊断差异的假设：医患关系，疼痛和痛苦的不同表达，以及社会网络/支持资源。方法包括结构化和半结构化访谈、心理社会工具评估、个案研究、临床接触的深入观察、支持小组会议和社会关系。这项研究很重要，因为它将促进我们对医患关系中的种族差异的理解，并有助于理解慢性病患者面临的障碍。这一新知识对于有意改善与患者关系的生物医学从业人员、有意为SLE患者及其家庭设计教育项目的公共卫生专业人员，或有关社会对慢性疾病态度的大型媒体活动都是有用的。

This dissertation research project by a cultural anthropology student at Emory University will study the different experience by race of women afflicted with systematic Lupus erythematosus in Atlanta, GA. In the US, African-American women are affected by SLE at twice the rate of white women, and experience diagnosis delays that contribute to excess morbidity and mortality. The project will study the complex processes that contribute to this delayed diagnosis among African-American women. Relying on a sociocultural model of the medical behaviors involved, the student will test hypotheses which explain the differential in delayed diagnosis by ethnicity in three areas: doctor-patient relationships, differential expressions of pain and suffering, and social network/support resources. The methods include structured and semi-structured interviews, psychosocial instrument assessments, individual case studies, and intensive observation of clinical encounters, support group meetings and social relationships. This research is important because it will advance our understanding of racial differences in doctor-patient relationships, and will contribute to understanding the obstacles facing chronic disease sufferers. This new knowledge will be useful to biomedical practioners interested in improving their relationships with their patients, and to public health professionals interested in designing education programs for women with SLE and their families, or larger media campaigns concerning societal attitudes towards chronic illness.