Halverson Colin M E, Penwell Heather L, Francomano Clair A
Center for Bioethics, Indiana University School of Medicine, Indianapolis, IN, USA.
Department of Medicine, Indiana University School of Medicine, Indianapolis, IN, USA.
SSM Qual Res Health. 2023 Jun;3. doi: 10.1016/j.ssmqr.2023.100237. Epub 2023 Feb 9.
Patients with hypermobile Ehlers Danlos Syndrome often experience psychological distress resulting from the perceived hostility and disinterest of their clinicians. We conducted 26 in-depth interviews with patients to understand the origins of this trauma and how it could be addressed in practice. We found that the cumulative effects of numerous negative encounters lead patients to lose trust in their healthcare providers and the healthcare system, and to develop acute anxiety about returning to clinic to seek further care. We describe this as . Ultimately, our interviewees described the result of this traumatization as worse - but preventable - health outcomes.
患有活动度过高型埃勒斯-当洛综合征的患者常常因察觉到临床医生的敌意和冷漠而遭受心理困扰。我们对患者进行了26次深入访谈,以了解这种创伤的根源以及在实践中如何解决。我们发现,无数次负面遭遇的累积效应导致患者对其医疗服务提供者和医疗系统失去信任,并对返回诊所寻求进一步治疗产生严重焦虑。我们将此描述为……最终,我们的受访者将这种创伤的结果描述为更糟糕但可预防的健康状况。