Conceptualizing Symptom Invalidation as Experienced by Patients With Endometriosis.

The aim of this paper is to provide foundational work to standardize the conceptual definition of what I refer to as 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.

Dilemmas and Strategy When Companion Participation During Appointments Differs from Patient and Companion Expectations.

Cancer patients often attend medical interactions with at least one companion. The degree to which companions participate varies, ranging from passive observer to active advocate. However, the structure of the medical interaction often promotes dyadic rather than triadic communication, creating ambiguity about to the degree to which companions can and should participate.

Conflicting views during gynecologic cancer care: a comparison of patients' and caregivers' perceptions of burden.

This study describes the experiences of cancer caregivers and compares these experiences with patients' assessment of cancer's toll on their caregiver. Participants (16 patient-caregiver dyads) were recruited from a NCI cancer center of excellence in the northeastern United States. Patients were in treatment for ovarian (n = 7), uterine (n = 2), or endometrial (n = 7) cancers.

Healthcare Providers' Impact on the Care Experiences of Patients with Endometriosis: The Value of Trust.

Endometriosis is a chronic and often painful inflammatory disease affecting one in ten biological females. It has been characterized as enigmatic and the average diagnostic delay is nearly seven years, time which patients experience as tumultuous and uncertain. This paper presents responses to a final open comment question of a large-scale survey documenting patients' experiences with (mis)diagnosis and highlights how patients perceived healthcare providers (HCPs) as barriers and facilitators to care.

Aligned and Divergent Perceptions of Support Persons' Role in Triadic Gynecologic Cancer Communication.

Health care providers routinely advise cancer patients to involve support persons in oncology care to fulfill critical support roles. This qualitative descriptive study explored alignment of triadic perceptions of support person involvement in oncology treatment visits and cancer-related care from the perspectives of patients with gynecologic cancer ( = 18), regular visit-attending support people ( = 16), and health care providers ( 10), including oncologists, nurses, and medical assistants. Semi-structured interviews ( 44) captured perceptions of facilitation and interference of support persons' roles within and outside appointments with oncology providers.

The effect of personalized invalidation of symptoms by healthcare providers on patient depression: The mediating role of self-esteem.

Objectives: Qualitative research has thoroughly investigated the diagnostic journeys of patients, who have often reported difficulty with healthcare providers regarding the acknowledgement of an organic, pathological cause for their symptoms (hereafter referred to as invalidation of symptoms). These encounters also reportedly contributed to reductions in self-esteem and to feelings of depression, particularly prior to diagnosis. The aim of this research was to quantitatively validate these observed relationships and examine the potential compounding effect of personalization of this reported invalidation.

The need for a standardized conceptual term to describe invalidation of patient symptoms.

In this paper, I comment on a growing literature documenting that many patients perceive their symptoms have been dismissed, ignored, not taken seriously, not believed, etc. (i.e.

"We Cannot Have any Negativity": A secondary analysis of expectancies for the experience of emotion among women with gynecologic cancer.

This study aimed to elucidate whether gynecologic cancer patients and their support persons have certain expectancies for emotion and whether these expectancies, if they exist, affect cancer-related communication. Semi-structured interviews ( = 34) were conducted separately with 18 patients and one of their support persons ( = 16). Thematic analysis revealed a subset of patients and support persons expected patients to not have any negative emotions, which patients also reported they perceived from support persons, and that these expectancies could affect cancer-related communication.

Patient perceptions of misdiagnosis of endometriosis: results from an online national survey.

Background Endometriosis is an estrogen-dependent disease affecting 10% of females in which endometrial-like tissue grows outside the uterus, resulting in pain, infertility, and physical and psychosocial dysfunction. Prior research documenting diagnostic error reports a 6.7-year mean diagnostic delay.

Reports of Sharing and Withholding Cancer-Related Information by Patients With Gynecologic Cancer and Their Supporters.

Purpose: To examine patients' with gynecologic cancer and supporters' reports of sharing and withholding cancer-related information during oncology visits, with a focus on navigating communication encounters more effectively.

Participants & Setting: 18 women who were recently diagnosed with gynecologic cancer and their supporters (N = 16) were recruited from the Rutgers Cancer Institute of New Jersey in New Brunswick.

Methodologic Approach: Data were collected via audio-recorded semistructured interviews and analyzed to determine the types of information that patients and supporters share or withhold during oncology visits.