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. Participants (N = 34, 16 dyads) included gynecologic cancer patients who were undergoing chemotherapy treatment (n = 18) and their companions (n = 16); all participants were separately interviewed. Interviews included discussion of dyadic communication patterns within medical interactions. The normative rhetorical theory (Goldsmith, 2019) was applied as a guiding framework. Patients discussed the dilemma they experience when companions are expected but absent. Patients and companions provided positive reports of companion communication when behavior aligned with expectations. Alternatively, patients and companions experience dilemmas when companions participate more than or differently from how patients and/or companions had expected. Companions provided one strategy for managing the dilemma of how to participate in medical interactions. Implications and limitations are discussed.

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. Drawing on a framework of trust, we observed that most participants, when discussing HCP-related barriers, raised concerns about HCPs' lack of technical competence, insufficient knowledge about endometriosis and inadequate medical training, followed by concerns about fidelity in which patients recounted experiences of their symptoms being trivialized or dismissed. Respondents also described a causal relationship between competence and fidelity, whereby a lack of competence was perceived to lead HCPs to be dismissive or neglectful. Respondents underscored how patient self-advocacy efforts and online patient communities helped them manage mistrust with HCPs. Although less frequently described, respondents also highlighted the value of HCPs as facilitators to care that similarly emphasized these two dimensions of trust and their inter-connectedness. We discuss the importance of HCPs in shaping patients' care experiences and, in particular, the value of trust for patients with endometriosis and likely other patient populations who seek legitimacy from the medical community but often feel unheard.

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. Caregivers included 7 women and 9 men who described themselves as spouse/partner (n = 7), adult child (n = 4), sister (n = 2), parent (n = 1), nephew (n = 1), and friend (n = 1). Participants completed semi-structured individual interviews that focused on perceptions of caregiver burden or the impact of the patient's diagnosis on the caregiver specifically. Data were coded inductively to identify themes present within participants' responses. This process included open and axial coding. Two overarching themes emerged: (1) patient-caregiver agreement and (2) patient-caregiver disagreement. Patient-caregiver agreement included two subthemes: (1) weight gain and (2) weight loss. Patient-caregiver disagreement consisted of two subthemes: (1) differing perspectives of quantity and quality of caregiving provided and (2) withholding of caregiver concerns. Overall, there was 56% agreement between patient and caregiver responses. The results may inform intervention development to address patient-caregiver communication, cancer caregiver needs, and ultimately improve caregiver quality of life.

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 (n = 18), regular visit-attending support people (n = 16), and health care providers (n = 10), including oncologists, nurses, and medical assistants. Semi-structured interviews (N = 44) captured perceptions of facilitation and interference of support persons' roles within and outside appointments with oncology providers. Thematic analyses revealed alignment and divergence regarding support persons' instrumental, informational, and emotional support behaviors. Perspectives aligned regarding what support functions companions provide. However, patients and support persons emphasized the significance of instrumental followed by informational and emotional support, whereas oncology providers highlighted informational, followed by emotional and instrumental support. Discussion provides insight into each role's perspective in the triad.

"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 (N = 34) were conducted separately with 18 patients and one of their support persons (n = 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. These results have implications and can facilitate appropriate recommendations for how cancer patients and support persons co-manage patients' emotions.

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. METHODS: Participants were 609 patients with self-reported endometriosis from a larger online research study. Invalidation and personalization of invalidation were measured with survey items developed for this research. Self-esteem and depression were assessed with well-known validated and reliable self-report instruments. Hierarchical linear regressions were performed, with path analysis to test for mediation. RESULTS: Invalidation predicted self-esteem but not depression. However, when personalized, invalidation predicted both self-esteem and depression. Path analysis testing the effect of personalization of invalidation on depression through self-esteem was significant, demonstrating full mediation. CONCLUSIONS: Results confirm qualitative research and provide the first known quantitative support that invalidation, particularly when personalized, can be associated with reduced self-esteem and, in turn, greater depression. PRACTICE IMPLICATIONS: These findings demonstrate an important barrier to patient-centered communication.

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. invalidated) by healthcare providers. I provide a narrative review of research reporting on this patient-provider phenomenon, invalidation of patient symptoms, in various illness contexts in order to highlight the variability concerning how scholars have been referring to the seemingly same phenomenon. Next, I discuss the challenges this variability poses for scholarship, including how it precludes the ability to build on our understanding of how it contributes to the patient experience and related health outcomes. I conclude with recommendations for future research.

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. This study takes a patient-oriented approach and aims to complement prior research on diagnostic error by examining patient-reported experiences with misdiagnosis. Methods Data were part of a larger online survey comprising nonrandomly sampled patients with self-reported surgically confirmed endometriosis (n = 758). We examined patients' reports of misdiagnosis, to which healthcare professionals (HCPs) they attributed misdiagnosis, mean diagnostic delay, and endometriosis symptoms and physical sites predicting misdiagnosis reports. Results Mean reported diagnostic delay was 8.6 years. 75.2% of patients reported being misdiagnosed with another physical health (95.1%) and/or mental health problem (49.5%) and most frequently by gynecologists (53.2%) followed by general practitioners (34.4%). Higher odds of reporting a physical or mental health misdiagnosis was associated with reports of virtually all symptoms and endometriosis on the bladder, small bowel, pelvic sidewall, and rectum. Higher odds of reporting a physical health misdiagnosis was exclusively associated with reports of endometriosis on the appendix. Higher odds of reporting a mental health misdiagnosis was exclusively associated with reports of a younger symptom onset age; endometriosis on the diaphragm, large bowel, lung, and ureter; and comorbid adenomyosis diagnosis. Conclusions Endometriosis continues to present serious and complex diagnostic challenges. These findings corroborate previous objective investigations documenting endometriosis diagnostic error, establish the first patient-reported incidence, and further demonstrate value in including patients in diagnostic error research.

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. FINDINGS: Thematic analyses revealed two major themes. IMPLICATIONS FOR NURSING: Probing patients and supporters separately on topics that they may not feel comfortable discussing can help nurses to identify unaddressed concerns and better assist patients and their supporters during oncology visits.