Conceptualizing and measuring symptom invalidation as experienced by patients with endometriosis
Creators: name: Bontempo, Allyson
Publisher: name: No Publisher Supplied
Year: 2023

description: This dissertation is an explication and investigation into the phenomenon that I call symptom invalidation, which I define as communication that deems one’s symptoms or related experiences as not real or of value. The explication of symptom invalidation is facilitated by two important conceptual frameworks: invalidating environments (Linehan, 1993) and illness representations (Leventhal et al., 1997, 1980, 1984). Drawing on the experiences of patients with endometriosis, I explore what message features constitute invalidating communication, what the negative sequelae of invalidating communication are, whether invalidation communication can be reliably measured, and whether the association between invalidation and negative sequelae can be tested. There are four phases to this dissertation. For Phase I, I perform a systematic review of the literature that has reported on the negative sequelae of invalidation to detail the harmful consequences invalidating encounters may have for patients and identify why it is so important for coherence to be brought to the construct of invalidation. For Phase II, I then analyze open-text responses detailing the diagnostic stories of 1038 patients with endometriosis to elucidate what invalidating messages from clinicians look like. For Phase III, I administer and subsequently validate a self-report measure—the Perceived Symptom Invalidation Scale (PSIS)—constructed as part of an online survey. For Phase IV, I examine the relationship between the PSIS and the negative sequelae uncovered from Phase II as part of a secondary analysis of data.For Phase I, I found that negative sequelae of invalidating encounters include negative patient affect, negative self-esteem, depression, and suicidal ideation; healthcare-related anxiety or trauma, loss of trust in clinicians or the broader healthcare system, frustration and anger toward clinicians or the broader healthcare system; symptom underreporting; and delays, breaks, or terminations in care. For Phase II, I found that patients experience invalidation in a variety of ways: it can be related to how clinicians identify the diagnosis and symptoms, how they communicate the cause of the patient’s symptoms, how they convey their understanding of the timeline of a patient’s illness, how they treat the consequences of the illness, and how they communicate their understanding of control over the symptoms. In addition to these forms of communication, patients also experience clinical decisions as invalidating, especially with respect to not investigating symptoms (e.g., not asking questions, not performing a physical examination, or not ordering appropriate testing). For Phase III, confirmatory factor analysis yielded a model with a good fit to the data. Convergent validity was confirmed via significant correlations with patient satisfaction, supportive clinician message quality, and cognitive/affective experiences of perceived betrayal. Finally, for Phase IV, I found that perceived invalidation is significantly correlated with all measures of negative sequelae—scared/terrified, less trusting of the medical system, angry, and cautious and reluctant about seeking further care.