Riggan, Kirsten A.

Background: Sharing of family cancer history (FCH) in Black families has been documented as lower than in other populations. There has been limited exploration as to the factors and circumstances that facilitate or hinder FCH communication in these communities. Objective: To explore intersecting factors influencing FCH discussion in Black families with a breast or ovarian cancer diagnosis. Interventions/Methods: We conducted qualitative interviews with socioeconomically diverse breast and ovarian cancer patients or family members. Interviews were thematically analyzed for iterative themes on FCH. Results: A total of 107 participants completed an interview. Discussion of FCH was reported as being influenced by several factors, including relationship and family dynamics, personality of family members, involvement in caregiving and support, and perceived importance and responsibility of communicating FCH for cancer prevention. Participants also described how inequitable access to medical care influenced disclosure of a cancer diagnosis, and socioeconomic concerns can influence family communication and documentation of FCH in the medical record. Conclusion: Our analysis indicates that disclosure of FCH is improving over time as access to healthcare has increased for Black families. Implications for Oncology Nursing Practice: Strategies to collect FCH outside of clinic settings, such as digital tools or chatbots, should be considered for increased capture of cancer pedigrees in families where discussion is limited. Patient education on options for preventative care and communications tools may assist patients with family discussions, although patients with adverse social determinants of health are likely to experience additional barriers to genetic screening based on FCH alone.

ABSTRACT Background The COVID‐19 pandemic presented unprecedented challenges to hospital system and critical care resources, leading to significant changes to operations and patient care. There are limited national data on these changes and instances of unsanctioned deviations from patient care, yet understanding the COVID response is key to future preparedness efforts. We sought to understand how hospitals and states navigated scarcity during COVID‐19, particularly in the absence of a declaration of crisis standards of care. Methods Between February 2022 and September 2022 we conducted 34 interviews with 36 leaders of U.S. states' COVID‐19 planning and response efforts. Interviews were transcribed verbatim and verified. We analyzed interviews using iterative inductive thematic analysis for descriptions of resource scarcity and changes to policies and procedures to prevent rationing lifesaving care. Results Nearly all participants described equipment and personnel scarcity in their home institution or state during COVID‐19. Hospitals across regions and states developed formal and informal coordination processes for load and resource sharing in response to influxes of high‐acuity patients, avoiding formal rationing of lifesaving resources in many regions. Participants also described unsanctioned patient triage, early discharge, and patients counseled to accept less aggressive care (e.g., premature transition to hospice) in states that had not declared crisis standards of care. Conclusions Extending limited resources and inter‐institutional collaboration helped avoid formal rationing. Yet, patient care was unquestionably impacted due to scarcity, both real and perceived. Reports of using hospital triage protocols to deny patients lifesaving care outside of formally recognized crisis conditions and attempts to nudge patients to accept less‐resource‐intensive care are concerning. This may have had disproportionate effects on older adults, individuals with disabilities, and racial and ethnic minoritized groups. To avoid unsanctioned deviations from standard practice in future health emergencies, we recommend that transparent and equitable triage protocols are implemented with robust oversight.

Objectives This study identified the prevalence of second victim experience (SVE) in a multidisciplinary sample of healthcare learners and explored personal experiences of trauma and desired forms of support following traumatic patient care events or situations. Method We used the validated SVE Support Tool-Revised and the Physician Well-Being Index (PWBI) to query healthcare learners at a large academic health system across the institution's medical, graduate medical education, and health sciences schools. The survey was open to all healthcare learners from April 8th, 2022 to May 30th, 2022. Here, we report on an analysis of respondents’ fixed responses describing the prevalence and characteristics of SVE. Results Of 2298 potential respondents, 206 answered at least one question (9.0% response rate). Of the 206 respondents, 205 answered questions inquiring if they had been a part of a stressful or traumatic patient care event or situation and 54.1% (111/205) answered in the affirmative. Of this group, 49.5% (51/103) reported feeling like a second victim (SV). The average PWBI of the exposed group was significantly higher (worse well-being) than the nonexposed group (3.4 vs 2.6, P = .0009). The most common forms of desired support for those exposed to a traumatic event and felt like an SV was conversation with peers 95.3% (41/43), family 81.4% (35/43), and a supervisor or manager 67.4% (29/43). Conclusion Findings suggest that many healthcare learners experience SVE and would benefit from connection to desired support strategies. Strategies to mitigate the impact of SVE on professional self-efficacy should be considered by education administrators. We present strategies from the literature and our institution that may be replicated for early identification and support of learners with SVE.

ABSTRACTBackgroundPsychological safety is critical to early and continued engagement with healthcare providers, yet no studies have explored this concept in relationship to cancer care. Black/African American (“Black”) individuals experience disparities in breast and ovarian cancer beyond what can be explained biologically.AimsWe explored factors influencing psychological safety among Black breast and ovarian cancer patients and their family members.MethodsSocioeconomically diverse patients with a personal diagnosis or family history of breast and/or ovarian cancer were invited to complete a semi‐structured qualitative interview on their cancer and healthcare experiences between September 2020 and April 2021. Informed by principles of grounded theory, interview transcripts were qualitatively analyzed for thematic content related to psychological safety.ResultsBlack breast and ovarian cancer patients and their family members described personal and community experiences and structural components of the healthcare system that suggested they may receive differential cancer care due to their race, placing them on guard. This posture was mediated by several self‐identified factors that added to or detracted from their comfort, including provider racial and gender concordance in healthcare, personalized care, and effective communication. The priorities and perceptions of care in participants receiving care in safety net clinics were more focused on what was feasible given resource limitations rather than what was ideally desired.ConclusionsImplementation of strategies to promote psychological safety with Black cancer patients may foster improved patient experiences, as well as encourage early screening, patient engagement, and treatment continuation.

ABSTRACTParents of children with Down syndrome have historically reported poor experiences receiving a prenatal diagnosis. In a 2003 survey, mothers reported that their physicians pitied them, emphasized negative aspects of Down syndrome, and encouraged them to terminate the pregnancy. This study assesses whether parents' perceptions have since improved. Community‐based organizations that had distributed the original 2003 survey distributed a similar survey to parents who have had a child with Down syndrome since 2003. Compared to the 2003 survey, parents continued to report dissatisfaction with their prenatal medical care (N = 60). Though subgroups became likelier to view their testing experience positively, parents' experiences worsened on certain metrics. Most parents reported dissatisfaction when providers conveyed pity or attempted to influence their decision‐making about the pregnancy. Interventions to date have failed to improve parents' perceptions of their prenatal medical support, urging new strategies to improve parents' care.

Abstract Black women experience significant disparities in morbidity and mortality related to hereditary breast and ovarian cancer (HBOC). Early identification of women with HBOC is essential for proactive screening and timely diagnosis. However, evidence suggests that Black women receive genetic testing for HBOC at lower rates than their White counterparts. We conducted in-depth qualitative interviews with 107 Black women with a personal or family history of breast or ovarian cancer, to understand their perceptions of their familial risk of HBOC and interest in genetic testing. In phase 1 of this study, participants were recruited from the networks of patient support organizations and historically Black sororities representing mostly highly educated and well insured patients. In phase 2, participants were recruited from a family medicine safety net clinic in Jacksonville, FL for socioeconomic diversity. Participants in both cohorts frequently expressed a lack of awareness about their family cancer history and identified many barriers to family disclosure of a cancer diagnosis. These include a culture of silence around medical issues and a belief that personal difficulties should be kept to oneself. Practical and cultural barriers to family history sharing were magnified among those with lower socioeconomic status. Many participants in both cohorts indicated a strong desire to understand their own risk of HBOC. They also expressed interested in genetic testing to proactively mitigate risk to themselves and future generations. Understanding of the potential relevance of HBOC testing to one’s personal health and post-test actionability was variable across both groups, although perceptions of genetic testing were generally favorable. These findings suggest that culturally tailored educational materials and alternative clinical modalities to collect family health history may be beneficial to improve timely identification of Black women who meet NCCN Guidelines for HBOC testing. Specifically, greater attention should be given to addressing barriers that led to underestimation of HBOC risk among patients experiencing disparities driven by adverse social determinants of health. Citation Format: Kirsten Riggan, Jane Yap, Ewan Cobran, Michele Halyard, Sarah James, Marion Kelly, Daphne Phillips, Megan Allyse. Perceptions and Experiences of Black Women on Family History Sharing and Genetic Testing for Hereditary Breast and Ovarian Cancer [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO4-09-08.