Conceptualizing Symptom Invalidation as Experienced by Patients With Endometriosis.

Abstract

The aim of this paper is to provide foundational work to standardize the conceptual definition of what I refer to as symptom invalidation by using invalidating environments and illness representations as guiding conceptual frameworks. Mixed deductive-inductive thematic analysis was used to analyze survey responses to an open-ended question gauging an invalidating interaction patients experienced with a clinician among 1038 patients with endometriosis. Dissimilarity in illness representations between patients and clinicians, as perceived by patients, occurred with feelings of invalidation. Invalidation was experienced in relationship to all identified domains of illness representations including how clinicians communicated the diagnosis (identity label), the internal (internal cause) and/or external (external cause) nature of the cause, clinicians' understanding of the timeline (timeline) and consequences (consequences), and clinicians' understanding of control over the symptoms via the efficacy of patients (self-efficacy) and coping procedures (response efficacy). Inductive analysis revealed invalidation can also be related to how clinicians communicate judgments of whether patients are presenting with ulterior motives (secondary gains). Clinicians' actions appear to compound experiences of invalidation by not having symptoms investigated (investigative experiences). Invalidating environments and illness representations serve as effective conceptual frameworks for providing a conceptual definition of symptom invalidation.