Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes

Colin M E Halverson; Heather L Penwell; Clair A Francomano

doi:10.1016/j.ssmqr.2023.100237

Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes

SSM Qual Res Health. 2023 Jun:3:100237. doi: 10.1016/j.ssmqr.2023.100237. Epub 2023 Feb 9.

Authors

Colin M E Halverson^{1

2

3

4}, Heather L Penwell¹, Clair A Francomano⁵

Affiliations

¹ Center for Bioethics, Indiana University School of Medicine, Indianapolis, IN, USA.
² Department of Medicine, Indiana University School of Medicine, Indianapolis, IN, USA.
³ Department of Anthropology, Indiana University, Indianapolis, IN, USA.
⁴ Regenstrief Institute, Indianapolis, IN, USA.
⁵ Department of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, IN, USA.

Abstract

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 clinician-associated traumatization. Ultimately, our interviewees described the result of this traumatization as worse - but preventable - health outcomes.

Keywords: Bioethics; Clinician-associated traumatization; Ehlers-Danlos Syndromes; Iatrogenic; In-depth interviews; Medical anthropology; Medical trauma; Post-traumatic stress symptoms; Trauma symptoms; United States of America.

Abstract

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