Citations

Abstract A 2003 survey revealed the scope of mothers' dissatisfaction with their postnatal support following a diagnosis of Down syndrome (DS). Substantial proportions of mothers reported that providers conveyed diagnoses with pity, emphasized negative aspects of DS, and neglected to provide adequate materials explaining DS. This study follows up on the 2003 survey by assessing whether parents' experiences have improved. Four DS nonprofit organizations, which participated in the original study, distributed a mixed‐methods survey to families who have had children with DS between 2003 and 2022. Quantitative analysis assessed correlations among responses and differences between the 2003 and 2022 survey groups. Open‐ended responses were qualitatively analyzed. Compared to the 2003 findings, parents' perceptions of their postnatal care have not improved ( N = 89). Parents are increasingly likely to report that their providers pitied them, omitted positive aspects of DS, and provided insufficient materials describing DS. Substantial proportions of parents reported fear (77%) and anxiety (79%), only 24% described receiving adequate explanatory materials, and parents were 45% likelier to report that physicians discussed negative aspects of DS than positive aspects. Qualitatively, substantial numbers of parents recounted insensitive conduct by providers. These results suggest that despite interventions, parents' experiences of postnatal diagnoses of DS have not improved over time. Certain provider behaviors—such as describing positive aspects of DS and providing comprehensive explanatory materials—can reduce fear and anxiety, pointing to directions for reform.

AbstractObjectivesThirty‐five states, including Florida, now cover cell‐free DNA (cfDNA) screening of fetuses for all pregnant patients enrolled in state public insurance programs. We interviewed Black and Hispanic obstetric patients at a safety net clinic in Florida shortly after the state rolled out cfDNA as a first‐tier screening method for publicly insured patients.MethodsBlack and Hispanic patients receiving prenatal care from a prenatal or maternal fetal medicine clinic at a federally qualified health center in Jacksonville, FL were invited to participate in a qualitative interview in English or Spanish to explore experiences and perceptions of prenatal cfDNA screening. Participants were recruited following their first prenatal visit when cfDNA is typically introduced. Interview transcripts were qualitatively analyzed for iterative themes based on principles of grounded theory.ResultsOne hundred Black and Hispanic patients (n = 51 non‐Hispanic Black, n = 43 Hispanic, n = 3 Hispanic Black, n = 3 Not Reported/Other) completed an interview. Participants described minimal opportunity for pre‐screening counseling and limited health literacy about cfDNA or its uses. Some believed that cfDNA could positively impact pregnancy health. Many were unsure if they had received cfDNA even though they were aware of the information provided by it. Most participants expressed an interest in cfDNA as a means for early detection of fetal sex and as an additional indication of general fetal health.ConclusionsPatient experiences indicate limited informed consent and decision‐making for cfDNA, discordant with professional guidelines on pre‐screen counseling. Our findings suggest that there should be additional investment in implementing cfDNA in safety net settings to ensure that patients and providers receive the support necessary for effective patient counseling and follow‐on care for the ethical implementation of cfDNA.

ImportanceIncarcerated patients admitted to the hospital face threats to their rights to privacy and self-determination in medical decision-making. Little is known about medical decision-making processes for hospitalized incarcerated persons who lack decisional capacity.ObjectiveTo characterize the prevalence of incapacity among hospitalized incarcerated patients and describe the decision-making processes, including who served as surrogate decision-makers, involvement of prison employees in medical decisions, and ethical concerns emerging from the patients’ care.Design, Setting, and ParticipantsRetrospective descriptive and qualitative study of medical records for all patients admitted from prison for at least 24 hours between January 1, 1999, and September 1, 2019, at a large Midwestern academic medical center. Data analysis was performed from March 15, 2021, to December 14, 2022.Main Outcomes and MeasuresPrevalence of prison-to-hospital admissions for patients with a loss of capacity and characteristics of medical decision-making.ResultsDuring the 20-year study period, 462 patients from the prison were admitted to the hospital, totaling 967 unique admissions. Of these, 131 admissions (14%) involved patients with a loss of capacity and 43 admissions (4%, representing 34 unique patients) required surrogate decision-making. Ten of these patients had advance directives. Surrogate decision-makers often faced decisions about end-of-life care (n = 17) or procedural consent (n = 23). A family member was identified as surrogate decision-maker in 23 admissions. In 6 cases with a kindred surrogate, additional consent was requested from a prison employee. In total, prison employees were documented as being present during or participating in major medical decisions for half of the admissions. Five themes emerged from thematic analysis: uncertainty and misinformation about patient rights and the role of prison employees in medical decision-making with respect to these two themes, privacy violations, deference to prison officials, and estrangement from family and friends outside of the prison.Conclusions and RelevanceIn this first in-depth description, to date, of decision-making practices for hospitalized incarcerated patients lacking decisional capacity, admissions of these patients generated uncertainty about their rights, sometimes infringing on patients’ privacy and autonomy. Clinicians will encounter incarcerated patients in both hospital and clinic settings and should receive education on how to support ethically and legally sound decision-making practices for this medically vulnerable population.

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 but evidence suggests that Black women receive genetic testing for HBOC at lower rates than their White counterparts. To understand Black women’s perspectives on HBOC genetic testing and potential factors influencing this decision, we conducted in-depth qualitative interviews with 107 Black women with a personal or family history of breast or ovarian cancer. Participants were recruited via the networks of patient support organizations and sororities as well as at a family medicine safety net clinic in Jacksonville, FL. Participants frequently expressed a lack of awareness about their family cancer history; many cancer patients stated that they only became aware of extensive family history upon their own diagnosis. Lack of family history sharing was attributed to a culture of silence around medical issues and a desire to protect family members from difficult information. However, most participants indicated a strong desire to understand their own risk of HBOC and were interested in genetic testing. Participants with a personal diagnosis were motivated to undergo HBOC genetic testing to reduce the risk for future generations. Clinical experiences with the offer of HBOC genetic testing were variable, with a few expressing that they had to make repeated inquiries from a provider to understand the relevance of the test to their own health. These findings suggest that investigation into alternative clinical modalities to collect family health history may be beneficial to identify Black women who meet NCCN Guidelines for HBOC testing. In contrast to the literature suggesting hesitancy for HBOC genetic testing, many participants perceived genetic results as having a positive impact for their medical decision-making and family's health. The development of patient materials and provider education on cultural and social factors that influence the uptake of HBOC genetic testing is also needed. Citation Format: Kirsten A. Riggan, Michele Halyard, Sarah E. James, Marion Kelly, Daphne Phillips, Megan A. Allyse. Perceptions and experiences of Black women on hereditary breast and ovarian cancer genetic testing [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A067.

Objectives In 2018, the Healing Emotional Lives of Peers (HELP) Program was implemented at Mayo Clinic Rochester to guide healthcare professionals (HCPs) after a second victim experience, such as adverse patient events or medical errors. The HELP program was expanded to all HCPs in response to the anticipated stressors of the COVID-19 pandemic. This article aims to describe the rapid expansion of the peer support program and evaluate the effectiveness of peer support provided to affected colleagues (ACs). Methods Quantitative data collected from workshop evaluations, activations, and associated metrics (TPS Self-Assessment, Encounter Form, and AC Self-Assessment) were summarized through standard descriptive statistics using SAS version 9.4 software. Open-ended responses were qualitatively analyzed for iterative themes about the HELP program and associated workshops. Results Between April 2020 and December 2021, 22 virtual workshops to train peer supporters were conducted with 827 attendees. Of these, 464 employees completed the workshop evaluation. A total of 94.2% rated the workshop as excellent or very good. Participants perceived the workshop to be highly effective and felt more prepared to support ACs. Between May 2020 and December 2021, 247 activations were submitted through the HELP Program’s intranet Web site and peer support was requested for 649 employees. Of the 268 TPS Self-Assessments, 226 (84.3%) felt that they provided helpful support to an AC. One hundred ACs evaluated support received, with 93% being “extremely” or “very satisfied.” Affected colleagues appreciated having a TPS provide judgment-free support. Conclusions The HELP Program promotes a culture of safety by helping HCPs process traumatic events. To effectively meet the needs of patients, healthcare organizations need to prioritize the well-being of their employees through interpersonal support.

There is growing recognition that clinical and nonclinical healthcare professionals may become “second victims” following adverse patient events, medical errors, or patient-related injuries. In addition to the trauma-associated symptoms experienced by second victims, unprocessed second victim experience (SVE) can lead to burnout and leaving the healthcare workforce. To better understand the risk factors and support needs of affected healthcare professionals after a SVE, we conducted in-depth qualitative interviews with twelve staff in obstetrics & gynecology and pediatrics at a large academic medical institution in the upper Midwest of the U.S. Several participants indicated that it was not the patient outcome itself that precipitated the SVE, but associated factors such as moral distress or communication challenges. Participants discussed the role of their work unit culture in post-SVE processing, expressing that units perceived as blame-seeking or where adverse events were not openly discussed, hindered their recovery. While desired support mechanisms were individualized, participants stressed the importance of immediate and proactive support, such as through a peer support program, and long-term support mechanisms for lingering symptoms. As attrition of the healthcare workforce continues to be a significant concern, it is essential that we understand and meet the post-SVE support needs of affected staff, to promote holistic care following adverse patient events.

Importance During the COVID-19 pandemic, many US states issued or revised pandemic preparedness plans guiding allocation of critical care resources during crises. State plans vary in the factors used to triage patients and have faced criticism from advocacy groups due to the potential for discrimination. Objective To analyze the role of comorbidities and long-term prognosis in state triage procedures. Design, Setting, and Participants This cross-sectional study used data gathered from parallel internet searches for state-endorsed pandemic preparedness plans for the 50 US states, District of Columbia, and Puerto Rico (hereafter referred to as states), which were conducted between November 25, 2021, and June 16, 2023. Plans available on June 16, 2023, that provided step-by-step instructions for triaging critically ill patients were categorized for use of comorbidities and prognostication. Main Outcomes and Measures Prevalence and contents of lists of comorbidities and their stated function in triage and instructions to predict duration of postdischarge survival. Results Overall, 32 state-promulgated pandemic preparedness plans included triage procedures specific enough to guide triage in clinical practice. Twenty of these (63%) included lists of comorbidities that excluded (11 of 20 [55%]) or deprioritized (8 of 20 [40%]) patients during triage; one state’s list was formulated to resolve ties between patients with equal triage scores. Most states with triage procedures (21 of 32 [66%]) considered predicted survival beyond hospital discharge. These states proposed different prognostic time horizons; 15 of 21 (71%) were numeric (ranging from 6 months to 5 years after hospital discharge), with the remaining 6 (29%) using descriptive terms, such as long-term. Conclusions and Relevance In this cross-sectional study of state-promulgated critical care triage policies, most plans restricted access to scarce critical care resources for patients with listed comorbidities and/or for patients with less-than-average expected postdischarge survival. This analysis raises concerns about access to care during a public health crisis for populations with high burdens of chronic illness, such as individuals with disabilities and minoritized racial and ethnic groups.

AbstractBackgroundIt has yet to be fully elucidated how differing populations of obstetric patients adapted to the disruptions in perinatal care and postpartum support from the COVID‐19 pandemic. We surveyed an enriched sample of socioeconomically advantaged patients to understand the influence of COVID‐19 on their perinatal care experience, well‐being, and coping.MethodsWe surveyed pregnant and postpartum patients (n = 6140) at a large academic medical center in the Midwest of the United States using the Coronavirus and Perinatal Experiences instrument in Spring 2021.ResultsThe survey was sent to 6141 pregnant and postpartum patients; 1180 (17.8%) respondents completed the survey, including 256 who were pregnant and 834 postpartum. Most pregnant patients experienced no changes in their prenatal care with 16.5% indicating somewhat worsened care. In the postpartum cohort, 37.5% stated their care had somewhat worsened. In describing influences on stress and mental health, 58.1% of postpartum respondents stated it was moderately, and 17.4% significantly, worse. The pandemic had a somewhat or moderately negative influence for 72.7% of respondents, with 11.0% stating these effects were extremely negative. Both cohorts characterized a range of coping strategies, most commonly, talking with friends and family (76.3%).Conclusion(s)Even among this sample of socioeconomically advantaged patients, respondents indicated that the pandemic disrupted many facets of their medical care and daily life, especially social activities and postpartum support. Our findings suggest that counseling on coping and adaptation strategies for stressors and increased health systems support be part of perinatal care during public health emergencies for all demographic groups.