Vanderbilt University, Nashville, TN, USA.
Vanderbilt University Medical Center, Nashville, TN, USA.
BMC Cardiovasc Disord. 2023 Nov 10;23(1):553. doi: 10.1186/s12872-023-03556-6.
Inequities in clinical care may contribute to racial disparities observed in studies of heart disease morbidity and cardiogenetic testing outcomes. There is a lack of research aimed at understanding the complexity of those inequities, but stigma likely contributes. This qualitative exploratory study helps close that gap in the literature by describing intersectional stigma manifestations perceived by the Black cardiomyopathy patient population at one academic medical center.
Qualitative interviews were conducted with 14 Black cardiomyopathy patients. Interviews aimed to elicit patients' experiences with discrimination related to diagnosis, symptoms, genetic testing, knowledge of genetic results, genetic counseling, providers' actions, and providers' communication. The interview guide was informed by The Health Stigma and Discrimination Framework. Data were also collected about participant demographics, type of cardiomyopathy, age of diagnosis, documentation of relevant family history, and completion of genetic counseling and/or genetic testing.
More than half of participants reported intersectional stigma manifestations related to their race, age, and/or weight while receiving care from cardiologists, nurse practitioners, genetic counselors, or clinical support staff. Stigma manifestations included physical roughness during patient care, withholding diagnostically-relevant information from the patient, impersonal care, coercion, and use of offensive stereotyped language by providers. These stigma manifestations impacted access to care, uptake of genetic testing, timeline to diagnosis, patient emotion, patient-provider trust, and adherence to medical recommendations.
This study provides nuanced qualitative descriptions of stigma manifestations that affect patient and clinical outcomes in cardiology care and genetic services in one medical center in the Southeastern United States. The results of this study suggest that provider bias and stigma manifestations have an adverse effect on cardiogenetic and clinical outcomes among Black cardiomyopathy patients. Clinical interventions are suggested to assist health professionals in providing culturally-competent and respectful care. These results help inform patient-provider communication, clinical policies, and evidence-based practice in cardiology care and genetics. Continued study of this topic across more institutions and with a larger sample size is needed to confirm the generalizability of the conclusions.
临床护理中的不平等可能导致心脏病发病率和心脏遗传检测结果研究中观察到的种族差异。尽管缺乏旨在了解这些不平等复杂性的研究，但耻辱感可能是其中的一个因素。这项定性探索性研究通过描述一个学术医疗中心的黑人心肌病患者群体所感知的交叉耻辱感表现，有助于填补文献中的这一空白。
对 14 名黑人心肌病患者进行了定性访谈。访谈旨在引出患者在诊断、症状、基因检测、遗传检测结果知识、遗传咨询、提供者行为和提供者沟通方面与歧视相关的经历。访谈指南受到《健康耻辱和歧视框架》的启发。还收集了参与者的人口统计学数据、心肌病类型、诊断年龄、相关家族史的记录以及遗传咨询和/或基因检测的完成情况。
超过一半的参与者报告了在接受心脏病专家、护士从业者、遗传咨询师或临床支持人员的护理时，与他们的种族、年龄和/或体重有关的交叉耻辱感表现。耻辱感表现包括患者护理过程中的身体粗暴、向患者隐瞒与诊断相关的信息、不人性化的护理、强制和提供者使用冒犯性的刻板语言。这些耻辱感表现影响了患者的护理获取、基因检测的接受程度、诊断时间、患者情绪、医患信任和对医疗建议的遵守。
本研究提供了在美国东南部的一个医疗中心，在心脏病护理和遗传服务中，影响患者和临床结果的耻辱感表现的细致定性描述。这项研究的结果表明，提供者偏见和耻辱感表现对黑人心肌病患者的心脏遗传和临床结果有不利影响。建议进行临床干预，以帮助医疗保健专业人员提供文化上兼容和尊重的护理。这些结果有助于为心脏病护理和遗传学中的医患沟通、临床政策和循证实践提供信息。需要在更多的机构和更大的样本量中对这一主题进行进一步研究，以确认结论的普遍性。
