A Theory of Misdiagnosis: A Qualitative Analysis of the Diagnosis Journey for an Ambiguous, Visible Disease With Stigmatizing Symptoms

Misdiagnosis is a serious problem in health care. This dissertation aims to explain why it can take many years to receive a diagnosis for a rare disease despite multiple attempts to seek help for unresolved symptoms. Using theories from social construction, labeling theory, social support, and health care utilization, three broad research questions are answered: 1) How do patients recognize a diagnostic error? 2) How do patients challenge an incorrect diagnostic label? and 3) What are the consequences of getting the right label after going through the process of getting diagnosed? Using as my data set a podcast series of interviews with women who have been diagnosed or suspect they have Cushing's syndrome, qualitative analysis indicates that this process is embedded in social interactions that shape the possibility that a diagnostic error is recognized, challenged, and resolved. These include physician biases, patient illness-related identity, interactions between patients and physicians, and social support. The process of resolving a diagnostic error can be nonlinear and cyclical, requiring multiple attempts by a patient to find doctors familiar with their suspected correct diagnosis and to receive appropriate diagnostic testing and interpretation of tests. This often-protracted process often resulted in new and multiple stressors. These included finding ways to cope with changes in their identity as it related to their health status, managing a disease that could have ongoing uncertainty, navigating a local health care system that may be unfamiliar with how to manage the condition, and finding relevant social support. This dissertation makes both theoretical and methodological contributions to the discipline of sociology and has practical implications for the practice of medicine.

Grantor dc:publisher

[Bloomington, Ind.] : Indiana University

Year dc:date.issued

2018

Author dc:creator

• Simacek, Kristina

Advisor dc:contributor.advisor

• Thoits, Peggy

• Cushing's syndrome
• diagnosis
• medical sociology
• misdiagnosis
• qualitative
• rare diseases

Statement dc:rights

• CC-BY-NC-ND: This work is under a CC-BY-NC-ND license. This work is under a CC-BY-ND license. You are free to copy and redistribute the material in any format, as long as you give appropriate credit to the original creator and provide a link to the license. You may not use this work for commercial purpose. If you remix, transform, or build upon the material, you may not distribute the modified material.

Licence dc:rights.uri

• https://creativecommons.org/licenses/by-nc-nd/4.0/

Language dc:language.iso

en

Handle dc:identifier.uri

https://hdl.handle.net/2022/22486

OAI identifier oai:identifier

oai:scholarworks.iu.edu:2022/22486