Prenatal Care of Parents Who Continued Pregnancies With Down Syndrome, 2003-2022.

Parents 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.

Through the eyes of Spanish-speaking patients, caregivers, and community leaders: a qualitative study on the in-patient hospital experience.

Background: Spanish-speakers with non-English language preference and complex medical needs suffer disparities in quality of care, safety, and health outcomes. Communication challenges during prolonged hospitalizations for complex illnesses negatively influence how this group engages in their care and decision-making while hospitalized. Limited literature capturing the perspectives of Spanish-speaking patients in this context exists.

"Down Syndrome is Not a Curse": parent Perspectives on the Medicalization of Down Syndrome.

Background: Potential clinical interventions to mitigate or eliminate symptoms of Down syndrome (DS) continue to be an active area of pre-clinical and clinical research. However, views of members of the DS community have yet to be fully explored.

Methods: We conducted a survey with parents/caregivers of people with DS ( = 532) to explore interest in potential therapeutic approaches during fetal development or childhood that may improve neurocognition and modulate the DS phenotype.

Second Victim Experiences of Health Care Learners and the Influence of the Training Environment on Postevent Adaptation.

Objective: To investigate the experience of medical and graduate learners with second victim experience (SVE) after medical errors or adverse patient outcomes, including impact on training and identification of factors that shape their postevent recovery.

Patients And Methods: The validated Second Victim Experience and Support Tool-Revised (SVEST-R), Physician Well-Being Index, and supplemental open-ended questions were administered to multidisciplinary health care learners between April 8, 2022, and May 30, 2022, across a large academic health institution. Open-ended responses were qualitatively analyzed for iterative themes related to impact of SVE on the training experience.

"In our community, we normalize pain": discussions around menstruation and uterine fibroids with Black women and Latinas.

Background: Uterine fibroids are non-cancerous neoplasms that arise from the uterus affecting over 75% of women. However, there is a disparity with Black women having an increased prevalence of nearly 80%. Black women also experience increased symptom burden, including younger age at the time of diagnosis and increased number and volume of fibroids.

Psychological reactance, misinformation, and distrust: A mixed methods analysis of COVID-19 vaccine uptake.

Background: Assessing perceptions of the COVID-19 vaccines is essential for understanding vaccine hesitancy and for improving uptake during public health emergencies. In the complicated landscape of COVID-19 vaccine mandates and rampant misinformation, many individuals faced challenges during vaccination decision-making. The purpose of our mixed methods study is to elucidate factors affecting vaccine decision-making and to highlight the discourse surrounding the COVID-19 vaccines in diverse and underserved communities.

Patient experiences with prenatal cell-free DNA screening in a safety net setting.

Objectives: Thirty-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.

Methods: Black 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.

The "Strong Black Woman" Paradox: Insights from a Cohort of Black Breast and Ovarian Cancer Patients and Family Members.

Background: The strong Black woman (SBW) stereotype can be seen as a positive view of Black women and even a standard to uphold. SBW internalization is a coping mechanism for dealing with racism and sexism. However, multiple recent studies have indicated that Black women in the modern era experience the paradox of SBW internalization having negative generational health effects.

Nutrition and Emotional Health Education: The Use of Emotional Intelligence and a Plant-Based Diet to Reduce Cardiometabolic Risk.

Background: For individuals living with chronic conditions like diabetes mellitus and obesity, there is a need for sustainable behavioral strategies and physiologic tools. These tools support identifying and addressing barriers to healthy eating, reducing body mass index (BMI), and building increased physical resilience in real time.

Objective: To evaluate whether a 12-week learning management system designed to combine nutritional intervention with education and coaching on improving emotional intelligence (EI) could alter cardiometabolic outcomes.

Rapid Expansion of the Healing Emotional Lives of Peers Program During COVID-19: A Second Victim Peer Support Program for Healthcare Professionals.

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).

Healthcare and support experiences of adolescents and young adults diagnosed with 47,XXY, 47,XXX, and 48,XXYY.

Sex chromosome aneuploidies (SCAs) are among the most common chromosomal conditions. There is little scholarship on how adolescents and young adults (AYAs) affected by SCA engage with and adapt to their diagnosis. In order to understand how AYAs adapt to a SCA diagnosis, we conducted a secondary analysis of qualitative interviews with AYAs.

Age-Specific Barriers and Facilitators to Research Participation Amongst African Americans in Observational Studies of Memory and Aging.

Background: Black/African Americans experience a high burden of Alzheimer disease and related dementias yet are critically underrepresented in corresponding research. Understanding barriers and facilitators to research participation among younger and older African Americans is necessary to inform age-specific strategies to promote equity in studies of early- and late-onset neurodegenerative diseases.

Study Design: Survey respondents (n = 240) rated barriers and facilitators of research participation.

Patient perceptions of body mass index restrictions limiting fertility care for women with high body mass index.

Research Question: What is the patient experience of women with high body mass index (BMI) with BMI restrictions that limit fertility care?

Design: Qualitative study using in-depth, semi-structured interview methodology. Interview transcripts were analysed for iterative themes in accordance with principles of grounded theory.

Results: Forty women with a BMI of 35 kg/m or higher with scheduled or completed appointment at the Reproductive Endocrinology and Infertility (REI) clinic completed an interview.

Views of parents of children with Down syndrome on Alzheimer's disease vaccination.

Individuals with Down syndrome (DS) experience increased risk of Alzheimer's disease (AD). Recent studies suggest that a vaccine against AD may be forthcoming. Parental buy-in is critical to the success of any intervention in this population, as adults with DS often rely on familial support.

Cancer Screening Experiences of Black Breast and Ovarian Cancer Patients and Family Members.

Black women experience disproportionate rates of advanced breast cancer diagnoses and mortality. Mammography is a proven and effective tool in early breast cancer detection and impacts patient outcomes. We interviewed Black women with a personal or family history of breast and/or ovarian cancer to understand their screening experiences and views.

Never "totally prepared": Support groups on helping families prepare for a child with a genetic condition.

A rapid increase in the reach and breadth of prenatal genetic screening and testing has led to an expanding need for prenatal support of families receiving this genetic information. As part of a larger study investigating prenatal preparation for a child with a genetic condition, we interviewed representatives of patient advocacy groups (PAGs) who support parents post-diagnosis. Groups supporting families with Down syndrome were often local or regional, while other groups were often national or international in scope.

"There's not enough studies": Views of black breast and ovarian cancer patients on research participation.

Background: Black breast and ovarian cancer patients are underrepresented in clinical cancer trials disproportionate to the prevalence of these cancers in Black females. Historically, lower enrollment has been attributed to individualized factors, including medical mistrust, but more recently structural factors, including systemic racism, have received additional scrutiny. We interviewed Black women with a personal or family history of breast and ovarian cancer to understand their views and experiences related to research participation.