Crusto Cindy A, Kaufman Joy S, Harvanek Zachary M, Nelson Christina, Forray Ariadna
Department of Psychiatry, Yale School of Medicine, 300 George Street, New Haven, CT, 06511, USA.
Department of Psychology, University of Pretoria, Cnr Lynwood Road and Roper Street, Hatfield, Pretoria, South Africa.
J Racial Ethn Health Disparities. 2024 Sep 3. doi: 10.1007/s40615-024-02153-3.
Sickle cell disease (SCD) is a major public health concern with significant associated economic costs. Although the disease affects all ethnic groups, about 90% of individuals living with sickle cell disease in the USA are Black/African American. The purpose of this study was to assess the health care discrimination experiences of adults living with SCD and the quality of the relationship with their health care providers. We conducted six focus groups from October 2018 to March 2019 with individuals receiving care at a specialized adult sickle cell program outpatient clinic at a private, nonprofit tertiary medical center and teaching hospital in the northeastern USA. The sample of 18 participants consisted of groups divided by gender and current use, past use, or never having taken hydroxyurea. Ten (56%) participants were males; most were Black/African American (83%) and had an average age of 39.4 years. This study reports a qualitative, thematic analysis of two of 14 areas assessed by a larger study: experiences of discrimination and relationships with providers. Participants described experiences of bias related to their diagnosis of SCD as well as their race, and often felt stereotyped as "drug-seeking." They also identified lack of understanding about SCD and poor communication as problematic and leading to delays in care. Finally, participants provided recommendations on how to address issues of discrimination.
镰状细胞病（SCD）是一个重大的公共卫生问题，伴随着巨大的相关经济成本。尽管该疾病影响所有种族群体，但在美国，约90%的镰状细胞病患者是黑人/非裔美国人。本研究的目的是评估成年镰状细胞病患者的医疗保健歧视经历以及他们与医疗保健提供者关系的质量。2018年10月至2019年3月，我们在美国东北部一家私立非营利性三级医疗中心和教学医院的专门成人镰状细胞病门诊项目中，对接受治疗的患者进行了六次焦点小组访谈。18名参与者的样本按性别以及当前使用、过去使用或从未使用羟基脲进行分组。10名（56%）参与者为男性；大多数是黑人/非裔美国人（83%），平均年龄为39.4岁。本研究报告了一项对一项更大规模研究评估的14个领域中的两个领域进行的定性主题分析：歧视经历和与医疗服务提供者的关系。参与者描述了与他们镰状细胞病诊断以及种族相关的偏见经历，并且经常感觉被刻板地认为是“寻求药物者”。他们还指出对镰状细胞病缺乏了解以及沟通不畅是问题所在，并导致护理延误。最后，参与者就如何解决歧视问题提出了建议。
