Moving from Principle to Practice: A Researcher's Guide to Co-Leading Engaged Research with Community Partners and Patients with Lived Experience to Reduce Maternal Mortality and Morbidity for Maternal Sepsis.

OBJECTIVES: Maternal mortality and morbidity disproportionately affect birthing people from racialized populations. Unfortunately, researchers can often compound these poor outcomes through a lack of authentic community engagement in research beyond the role of the research subject, leading to ineffective strategies for improving care and increasing equity. This article details the real-life strategies utilized to develop a community-engaged research project of a phased federally funded grant employing community engagement principles of co-leadership and co-creation. It also includes reflections from the researchers and advisory board on promising practices and lessons learned for equitably engaging patients and community partners in research. METHODS: This article details the application of principles of community-engaged research in a federally funded phased research project focused on understanding disparities in maternal sepsis to develop better clinical and community interventions. Specifically, it discusses early steps in the research partnership to create a sustainable partnership with a Community Leadership Board guided by the principles of transparency, respect, compensation, and increasing research justice. RESULTS: Based on the authors' experience, recommendations are provided for funders, researchers, and institutions to improve the quality and outcomes of communityengaged research. This work adds to community-based participatory and community-engaged research literature by providing concrete and practical steps for equitably engaging in research partnerships with a variety of collaborators. CONCLUSIONS: In conclusion, integrated patient and community co-leadership enhances research by providing insight, access to communities for education and dissemination of information, and identifying critical areas needing change. This report may help others address fundamental principles in this journey.

"Ignored and Invisible": Perspectives from Black Women, Clinicians, and Community-Based Organizations for Reducing Preterm Birth.

OBJECTIVES: The preterm birth rate for Black women in the U.S. is consistently higher than other racial groups. The crisis of preterm birth and adverse birth outcomes among Black people is a historical, systematic confluence of racism, stressors, and an unsupportive and hostile healthcare system. To inform the development of preterm birth risk reduction interventions, this study aimed to collect and synthesize the experiences of Black women who gave birth preterm along with clinicians and community-based organizations who serve them. METHODS: A qualitative study design was employed whereby nine focus groups and 17 key informant interviews that included Black women, clinicians, and representatives from community-based organizations were facilitated in Los Angeles County from March 2019 to March 2020. Participants were recruited through the organizations and the focus groups took place virtually and in person. The process of thematic analysis was employed to analyze the focus group and interview transcripts. RESULTS: Five overarching themes emerged from the data. Black women experience chronic and pregnancy-related stress, and have lasting trauma from adverse maternal health experiences. These issues are exacerbated by racism and cultural incongruence within healthcare and social services systems. Black women have relied on self-education and self-advocacy to endure the barriers related to racism, mistreatment, and their experiences with preterm birth. CONCLUSIONS FOR PRACTICE: Healthcare and social service providers must offer more holistic care that prioritizes, rather than ignores, the racial components of health, placing increased importance on implementing inclusive and culturally-appropriate patient education, attentiveness to patient needs, respectful care, and support for Black women.

Near-miss and maternal sepsis mortality: A qualitative study of survivors and support persons.

BACKGROUND: Prior studies have shown that maternal deaths due to sepsis occur due to delays in recognition, treatment, and escalation of care through medical chart reviews. This study was conducted to obtain the patient perspective for near-miss and maternal mortality cases due to sepsis. OBJECTIVE: To identify quality improvement opportunities for improving maternal sepsis through patient and support person experiences. STUDY DESIGN: Twenty semi-structured interviews and three follow-up focus groups with patients who experienced critical illness from maternal sepsis in the United States and their support persons (when available) were conducted from May 23, 2022, through October 14, 2022. In this qualitative study, data were analyzed using inductive thematic analysis. RESULTS: In this qualitative study of patients with maternal sepsis and their support persons, four main quality improvement themes were identified. The themes were the following: (1) participants reported a lack of awareness of pregnancy-related warning signs and symptoms of when to seek care, (2) many of the presenting symptoms participants experienced were not typical of expected warning signs of maternal sepsis, such as severe pain, overwhelming tiredness, and lack of fever (3) participant concerns were met with dismissal leading to delays in diagnosis, (4) participants experienced long-term sequelae but had difficulty receiving screening and referrals for treatment. CONCLUSIONS: The findings of this study suggest that standardized patient education about the warning signs of maternal sepsis and provider education about the presentation of maternal sepsis, improved listening to patients, and follow-up for sequalae of sepsis are needed.

Coping With Disasters and Pandemics Through Experience and Community: How African American Older Adults Navigate Disaster Planning, Response, and Recovery.

OBJECTIVE: Studies have reported that minorities are disproportionately impacted by the COVID-19 pandemic. Few studies have elucidated the lived experiences of African American older adults, and the resiliency displayed in combatting the COVID-19 pandemic and other disasters. METHODS: This study used 4 recorded focus groups with 26 African American older adults who have spent most of their lives living in Houston, Texas to assess safety, economic, and health concerns related to the pandemic and similarities or differences with other types of disasters that are specific to Houston/ the Gulf Region of Texas, such as Hurricane Harvey. RESULTS: Key themes emerged from the thematic analysis: 1) previous disasters provided important coping and preparation skills, although each occurrence was still a major stressor, 2) while telehealth was a significant benefit, regular health maintenance and chronic disease management were not completed during the COVID-19 pandemic, 3) information from the federal and state authorities were inconsistent and spurred fear and anxiety, 4) participants experienced few to no disruptions to their income but were heavily called on to support family members, and 5) participants experienced anxiety and isolation, but many used existing social connections to cope. CONCLUSIONS: These findings demonstrate how African American older adults navigate disaster response and recovery through experience and community. Providing unambiguous information to older adults could prove useful in preparing for future disaster events and coping with disasters.

Correlates of Social Isolation Among Community-Dwelling Older Adults During the COVID-19 Pandemic.

Background: The past year has severely curtailed social interactions among older adults given their high rates of COVID-19 morbidity and mortality. This study examined social, behavioral, and medical correlates of social isolation among community-dwelling older adults during the COVID-19 pandemic and stratified findings to explore unique differences in two typically neglected populations, African American and Hispanic older adults. Methods: Working with community-based organizations and senior living centers, the research team administered a survey to older adults 55 years of age and older (n = 575). The survey assessed COVID-19 prevention behaviors, medical conditions, and lived experiences, including feelings of social isolation, in the target population. Responses to a previously validated social isolation question informed a dichotomous social isolation dependent variable. Multivariable logistic regression was used to adjust for sociodemographic characteristics, medical conditions, unmet caregiving needs, and COVID-19 prevention behaviors. Results from the regression model were stratified by race/ethnicity to examine correlates of social isolation in African American and Hispanic older adults, separately. Results: Overall, female sex and a higher level of education were also positively associated with social isolation (OR = 2.46, p = 0.04; OR = 5.49, p = 0.02) while having insurance exhibited an inverse relationship (OR = 0.25, p = 0.03). Unmet caregiving needs were strongly associated with social isolation (OR = 6.41, p < 0.001) as was having any chronic conditions (OR = 2.99, p = 0.02). Diabetes was the single strongest chronic condition predictor of social isolation. Among minority older adults, a different pattern emerged. For Hispanic older adults, language, unmet caregiving needs, and social distancing were strongly associated with social isolation; while unmet caregiving needs, having 1+ chronic conditions and adhering to social distancing guidelines were significant predictors in African American older adults. Conclusion: These findings suggest that social isolation affects older adults in a myriad of ways and support the need for culturally sensitive initiatives to mitigate the effect of social isolation in these vulnerable populations.

Health Disparities and Climate Change: The Intersection of Three Disaster Events on Vulnerable Communities in Houston, Texas.

Although evidence suggests that successive climate disasters are on the rise, few studies have documented the disproportionate impacts on communities of color. Through the unique lens of successive disaster events (Hurricane Harvey and Winter Storm Uri) coupled with the COVID-19 pandemic, we assessed disaster exposure in minority communities in Harris County, Texas. A mixed methods approach employing qualitative and quantitative designs was used to examine the relationships between successive disasters (and the role of climate change), population geography, race, and health disparities-related outcomes. This study identified four communities in the greater Houston area with predominantly non-Hispanic African American residents. We used data chronicling the local community and environment to build base maps and conducted spatial analyses using Geographic Information System (GIS) mapping. We complemented these data with focus groups to assess participants' experiences in disaster planning and recovery, as well as community resilience. Thematic analysis was used to identify key patterns. Across all four communities, we observed significant Hurricane Harvey flooding and significantly greater exposure to 10 of the 11 COVID-19 risk factors examined, compared to the rest of the county. Spatial analyses reveal higher disease burden, greater social vulnerability, and significantly higher community-level risk factors for both pandemics and disaster events in the four communities, compared to all other communities in Harris County. Two themes emerged from thematic data analysis: (1) Prior disaster exposure prepared minority populations in Harris County to better handle subsequent disaster suggesting enhanced disaster resilience, and (2) social connectedness was key to disaster resiliency. Long-standing disparities make people of color at greater risk for social vulnerability. Addressing climate change offers the potential to alleviate these health disparities.

A dominant RAD51C pathogenic splicing variant predisposes to breast and ovarian cancer in the Newfoundland population due to founder effect.

BACKGROUND: RAD51C is important in DNA repair and individuals with pathogenic RAD51C variants have increased risk of hereditary breast and ovarian cancer syndrome (HBOC), an autosomal dominant genetic predisposition to early onset breast and/or ovarian cancer. METHODS: Five female HBOC probands sequenced negative for moderate- and high-risk genes but shared a recurrent variant of uncertain significance in RAD51C (NM_058216.3: c.571 + 4A > G). Participant recruitment was followed by haplotype and case/control analyses, RNA splicing analysis, gene and protein expression assays, and Sanger sequencing of tumors. RESULTS: The RAD51C c.571 + 4A > G variant segregates with HBOC, with heterozygotes sharing a 5.07 Mbp haplotype. RAD51C c.571 + 4A > G is increased ~52-fold in the Newfoundland population compared with the general Caucasian population and positive population controls share disease-associated alleles, providing evidence of a founder effect. Splicing analysis confirmed in silico predictions that RAD51C c.571 + 4A > G causes exon 3 skipping, creating an immediate premature termination codon. Gene and protein expression were significantly reduced in a RAD51C c.571 + 4G > A heterozygote compared with a wild-type relative. Sanger sequencing of tumors from two probands indicates loss-of-heterozygosity, suggesting loss of function. CONCLUSION: The RAD51C c.571 + 4A > G variant affects mRNA splicing and should be re-classified as pathogenic according to American College of Medical Genetics and Genomics guidelines.

Self-Care Practices and the Professional Self.

Consistently and actively engaging in self-care has been shown to improve the performance of mental health practitioners by reducing burnout, vicarious trauma, compassion fatigue, and other stress-related psychological problems. Not only is this important to the individual practitioner's well-being, but ethical standards also mandate the recognition and remediation of any physical, mental, or emotional self-impairment to maintain high standards of care for clients. Professionals in small communities, like the Deaf community, however, confront unique challenges in attending to their self-care. This article investigates these challenges-as well as the rewards-experienced by Deaf and hearing counselors working in mental health care with deaf clients.