Publications

Abstract

The Centers for Disease Control and Prevention Minority HIV Research Initiative (MARI) funded 8 investigators in 2016 to develop HIV prevention and treatment interventions in highly affected communities. We describe MARI studies who used community-based participatory research methods to inform the development of interventions in Black/African American and Hispanic/Latinx communities focused on sexual minority men (SMM) or heterosexual populations. Each study implemented best practice strategies for engaging with communities, informing recruitment strategies, navigating through the impacts of COVID-19, and disseminating findings. Best practice strategies common to all MARI studies included establishing community advisory boards, engaging community members in all stages of HIV research, and integrating technology to sustain interventions during the COVID-19 pandemic. Implementing community-informed approaches is crucial to intervention uptake and long-term sustainability in communities of color. MARI investigators’ research studies provide a framework for developing effective programs tailored to reducing HIV-related racial/ethnic disparities.

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Introduction:The purpose of this study was to determine the effectiveness of a web-based, vaccine resource-directed, interactive communication intervention for vaccine-hesitant prenatal women and mothers of newborns/infants to make informed decisions based on scientific evidence about vaccinating themselves and their newborns/infants, respectively.Methods:A prospective quasi-experimental design was used to determine the effectiveness of the intervention for vaccine-hesitant prenatal women (stage 1) and for mothers of newborns (stage 2). A survey was administered to prenatal women to determine attitudes about vaccines for themselves during pregnancy. A survey on parental attitudes about vaccination for their children was administered to mothers of newborns. The surveys were administered to determine levels of vaccine acceptance. Vaccine acceptors and vaccine-hesitant individuals were included in the study as control and intervention group participants, respectively; vaccine refusers were eliminated from the study.Results:Among prenatal vaccine-hesitant women, 82% had full prenatal vaccination coverage after receiving the intervention (χ2= 7.2, P =.02). The majority of mothers of newborns/infants (74%) fully immunized their infants.Discussion:The interventions for prenatal vaccine-hesitant women were effective in changing their status from hesitant to acceptors. The mothers of newborns/infants who were initially hesitant had vaccination rates that exceeded the comparison group comprised of vaccine acceptors.

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Background: Cervical cancer oncogenesis starts with human papillomavirus (HPV) cell entry after binding to host cell surface receptors; however, the mechanism is not fully known. We examined polymorphisms in receptor genes hypothesized to be necessary for HPV cell entry and assessed their associations with clinical progression to precancer. Methods: African American women (N =1,728) from the MACS/WIHS Combined Cohort Study were included. Two case-control study designs were used-cases with histologybased precancer (CIN3 ) and controls without; and cases with cytology-based precancer [high-grade squamous intraepithelial lesions (HSIL)] and controls without. SNPs in candidate genes (SDC1, SDC2, SDC3, SDC4, GPC1, GPC2, GPC3, GPC4, GPC5, GPC6, and ITGA6) were genotyped using an Illumina Omni2.5-quad beadchip. Logistic regression was used to assess the associations in all participants and by HPV genotypes, after adjusting for age, human immunodeficiency virus serostatus, CD4 T cells, and three principal components for ancestry. Results: Minor alleles in SNPs rs77122854 (SDC3), rs73971695, rs79336862 (ITGA6), rs57528020, rs201337456, rs11987725 (SDC2), rs115880588, rs115738853, and rs9301825 (GPC5) were associated with increased odds of both CIN3 and HSIL, whereas, rs35927186 (GPC5) was found to decrease the odds for both outcomes (P value ≤ 0.01). Among those infected with Alpha-9 HPV types, rs722377 (SDC3), rs16860468, rs2356798 (ITGA6), rs11987725 (SDC2), and rs3848051 (GPC5) were associated with increased odds of both precancer outcomes. Conclusions: Polymorphisms in genes that encode binding receptors for HPV cell entry may play a role in cervical precancer progression.

Abstract

In the current study, we conducted one-on-one interviews with primary care providers (PCPs) and family care partners (FCPs) and held focus groups with interdis-ciplinary adult day service center (ADSC) staff to understand the perspectives of care providers across community settings regarding early warning signs of acute illnesses in persons living with dementia (PLWD). We used content analysis to analyze qualitative data. Warning signs of acute illnesses in PLWD fell into one of five categories, including new onset changes in (a) physical functions, (b) moods or be-haviors (psychological), (c) social interactions, (d) speech, or (e) appearance. FCPs (n = 11) focused on physical changes, whereas ADSC staff (n = 33) emphasized changes in speech and social interactions in addition to the other categories. Al-though ADSC staff and PCPs (n = 22) focused on changes in functions and moods, each group described these changes differently. ADSC staff possess rich information that can be used to identify acute changes in PLWD and describe a broader range of warning signs compared to PCPs and FCPs. FCPs may benefit from further training in distinguishing between normal disease progression and acute illness. Future research should focus on the implementation of standardized tools across community-based care providers to simplify the identification and reporting of early warning signs in PLWD.

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Background: Maternal mortality in the United States is a public health crisis and national emergency. Missed or delayed recognition of preventable life-threatening symptoms and untimely treatment of preventable high-risk medical conditions have been cited as key contributors to the nation’s worsening mortality rates. Effective strategies are urgently needed to address this maternal health crisis, particularly for Black birthing populations. Morbidity and Mortality Assessment: Lifting Outcomes Via Education (MAMA LOVE) is a web-based platform that focuses on the identification of maternal morbidity and mortality risk factors. Objective: The purpose of this paper is to present the conceptualization, development, heuristics, and utility evaluation of the web-based maternal mortality risk assessment and educational tool MAMA LOVE. Methods: A user-centered design approach was used to gain feedback from clinical experts and potential end users to ensure that the tool would be effective among groups most at risk for maternal morbidity and mortality. A heuristic evaluation was conducted to evaluate usability and need within the current market. Algorithms describing key clinical, mental health, and social conditions were designed using digital canvas software (Miro) and incorporated into the final wireframes of the revised prototype. The completed version of MAMA LOVE was designed in Figma and built with the SurveyJS platform. Results: The creation of the MAMA LOVE tool followed three distinct phases: (1) the content development and creation of an initial prototype; (2) the feedback gathering and usability assessment of the prototype; and (3) the design, development, and testing of the final tool. The tool determines the corresponding course of action using the algorithm developed by the authors. A total of 38 issues were found in the heuristic evaluation of the web tool’s initial prototype. Conclusions: Maternal morbidity and mortality is a public health crisis needing immediate effective interventions. In the current market, there are few digital resources available that focus specifically on the identification of dangerous symptoms and risk factors. MAMA LOVE is a tool that can address that need by increasing knowledge and providing resources and information that can be shared with health care professionals.

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An increasing body of evidence highlights the importance of an individual’s place of residence on their health and functional outcomes. This study is based on Outcome and Assessment Information Set data to assess the differences in emergency department visits among Medicare home health care patients by patients' residence location (rural/urban status and neighborhood socioeconomic status). Compared to urban patients, a disproportionately higher proportion of rural patients lived in more or most disadvantaged neighborhoods (83.9% vs. 41.3%). Using linear probability regression models, patients in rural areas (coefficient =.02, p <.001) and disadvantaged neighborhoods (less disadvantaged: coefficient =.02, p <.001; more disadvantaged: coefficient =.034, p <.001; most disadvantaged: coefficient =.042, p <.001) were more likely to experience emergency department visits. Policymakers should consider utilizing area-based target interventions to mitigate gaps in home health care. Also, given that the majority of rural patients reside in disadvantaged neighborhoods, neighborhood characteristics should be considered in addressing rural–urban disparities and improving home health care.

Abstract

China’s gender imbalance has led to severe bachelorhood for decades. The purpose of this study was to examine the association between potential availability of family support and worry about old-age support for themselves and their parents from the perspective of rural bachelors. Data was drawn from a cross-sectional survey “Mobility, Sexuality, and Quality of Life of Never Married Men in Rural China”, which was conducted in 9 provinces in 2017. The sample included 359 men who were at least 28 years old, have rural household registration (hukou, in Chinese), and never married. Logistic regressions were used to examine the association between potential availability of family support, measured by living parents and siblings, and worry about old-age support. Results showed that rural bachelors who had a sister(s) were less likely to worry about both their own and their parents’ old-age support than those without sister(s) (OR = 0.496, p < 0.01; OR = 0.494, p < 0.01). Bachelors with a non-bachelor brother(s) were less likely to worry about their parents’ old-age support than those without brother(s) (OR = 0.436, p < 0.01). Our findings highlight the importance of potential availability of family support in determining worries about old-age support for bachelors and their parents. Considering the low level of social security in rural China and the rapid increase in the number of aging bachelors, policies that compensate for the lack of family support should be implemented to relieve vulnerable bachelors’ worries.

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Objective: To investigate mental health needs and barriers to seeking mental health support in Medicaid-funded Assisted Living Facility (M-ALF). Design: A multimethod, qualitative-dominant descriptive design using questionnaires and semistructured interviews. Setting and Participants: The study occurred at a M-ALF in the Bronx, New York. A researcher in residence recruited 13 residents (11 Black or African American, 2 Asian) using purposive sampling. Methods: Demographic data and mental health indicators (depression, anxiety, stress, hopelessness) were measured with questionnaires (Center for Epidemiological Studies Depression Scale, Edmonton Symptom Assessment System, Perceived Stress Scale, Beck Hopelessness Survey) and analyzed with descriptive statistics. Interviews were conducted between June and November 2021, transcribed, and analyzed using conventional content analysis. Results: Thirteen residents (mean age: 73.4 years, mean length of stay: 3.5 years; range: 1.0-7.5) completed data collection. Quantitatively indicators of unmet mental health were common. Qualitatively, residents reported barriers to mental health access to address depression, anxiety, and substance use. This was accompanied by concerns surrounding loss of autonomy, mistrust for M-ALF organizational support, isolation and uncertainty about how to receive mental health support. Perspectives were shaped by past experiences with institutional living, serious illness, and being unhoused. Themes and subthemes were (1) mental health need (unmet mental health need, depression, and anxiety and seeking support through non–mental health resources) and (2) barriers to mental health support (dissatisfaction with M-ALF care, perceived threats to autonomy, desire for autonomy that leads to diminished care seeking). Conclusion and Implications: Residents of M-ALF have mental health needs for which care is stymied by loss of autonomy, lack of resources, and the M-ALF environment. Residents use unconventional resources to address needs that may be neither efficient nor effective. Novel mental health interventions and processes are needed to improve mental health access and should prioritize residents’ desire for autonomy and the unique circumstances of living in M-ALF.

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In order to reduce care partner strain and support aging in place for people living with Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD), adult day centers (ADCs) must manage behavioral and psychological symptoms of dementia (BPSD). The purpose of this paper is to identify person-centered care strategies used by center staff to manage BPSD. Six focus groups with center staff (n = 31) were conducted. Data were analyzed using directed content analysis guided by Kitwood’s conceptual approach to cultivating personhood in dementia care. Themes were identified and organized within Kitwood’s framework. The results demonstrate that staff incorporate evidence-based person-centered approaches to AD/ADRD care that align with Kitwood’s principles of comfort, attachment, inclusion, and identity. Staff individualize their approach to people with AD/ADRD within a group setting. They monitor, engage, socially stimulate, and, when needed, de-stimulate them. Centers are flexible social environments with underrecognized expertise managing BPSD using person-centered approaches.

Abstract

Acculturation and immigration-related factors may impact preventive, routine cardiovascular risk (CV) screening among African immigrants. We examined the associations between length of stay, percent of life spent in the U.S. (proxy for acculturation), and CV screening. Outcomes were recent screening for hypertension, diabetes, and dyslipidemia. Multivariable logistic regression analyses were used to examine these relationships. Among 437 African immigrants, 60% were males, mean age was 47 years, 61% had lived in the U.S. for ≥10 years, mean length of stay was 15 years, and 81% were employed. Only 67% were insured. In the 12 months prior, 85% had screened for hypertension, 45% for diabetes, and 63% for dyslipidemia. African immigrants with a ≥10-year length of U.S. stay had 2.20 (95%Confidence Intervals: 1.31-3.67), and those with >25% years of life spent in the U.S. had 3.62 (95%CI: 1.96-6.68) higher odds of dyslipidemia screening compared to those with a <10-year length of stay and ≤25% years of life spent in the U.S., respectively. Overall, screening for CV risk higher in African immigrants who have lived longer (≥10 years) in the U.S. Recent African immigrants may experience challenges in accessing healthcare. Health policies targeting recent and uninsured African immigrants may improve access to CV screening services.

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Objectives: To investigate the relationship between acculturation and subsequent oral health problems in older Chinese Americans and to further test the moderating role of neighborhood disorder in such a relationship. Methods: The working sample included 2,706 foreign-born community-dwelling older Chinese Americans aged 60 years or older who participated in the Population Study of Chinese Elderly in Chicago at baseline between 2011 and 2013 and the 2-year follow-up between 2013 and 2015. Stepwise Poisson regressions with lagged dependent variable were conducted. Results: Behavioral acculturation was protective against subsequent oral health problems, and the protective role was stronger among individuals reporting lower levels of neighborhood disorder. Residence in Chinatown was associated with an increase in the risk of subsequent oral health problems. Discussion: To reduce oral health symptoms and related burdens, it is important to consider, in practice and policy, the role of acculturation and the neighborhood on subsequent oral health outcomes.

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Asian American immigrant (AAI) women may have suboptimal 24-h activity patterns due to traditional gender role and caregiving responsibilities. However, little is known about their objectively-measured activity. We measured AAI women’s 24-h activity patterns using accelerometry and examined cultural correlates of time in sedentary behavior (SB), light intensity physical activity (LIPA), moderate-to-vigorous physical activity (MVPA) and sleep. Seventy-five AAI women completed surveys on acculturation (years of U.S. residency and English proficiency), discrimination, and sleep quality, and 7 days of wrist- and hip-accelerometer monitoring. Linear regression was conducted controlling for age, BMI, and education. We also compared activity patterns across Asian subgroups (East, Southeast, South Asians). On average, AAI women had 33 min of MVPA, 6.1 h of LIPA, 10 h of SB, and 5.3 h of sleep per day. South Asian women had the longest SB and the shortest sleep and MVPA hours. English proficiency was negatively related to MVPA (p = 0.03) and LIPA (p < 0.01). Years of U.S. residency was positively related to SB (p = 0.07). Discrimination was related to shorter (p = 0.03) and poorer quality sleep (p = 0.06). Culturally-tailored programs targeting SB and sleep and integrating coping strategies against discrimination could help optimize AAI women’s 24-h activity patterns.

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Background: In Israel, there is a need to improve quality of life and health outcomes among patients and families facing cancer. Increasing awareness of, literacy about, and availability of palliative care may further this goal. Aims:This study aimed to adapt a palliative care-focused cancer self- and family management intervention developed in the US for use in Israel. Methods: The Managing Cancer Care (MCC) psycho-educational intervention is comprised of Managing Cancer Care: A Personal Guide (MCC-PT©) for patients and Managing Cancer Care: A Caregiver's Guide (MCC-CG©) for family caregivers. Following translation into Hebrew, an expert panel of Israeli nurses edited the MCC tool for cultural relevance. The authors then conducted qualitative interviews with patients with breast cancer and their family caregivers to obtain feedback. Data were analysed using qualitative content analysis. Findings: Following recommendations from Israeli experts in oncology and/or palliative care (n=3), the authors revised intervention content specific to the US healthcare system and culture. Patients' (n=13) and family caregivers' (n=10) reported MCC as attractive (70%, 80%), topically relevant (80%, 70%), and culturally appropriate, but felt that palliative care resources should be more Israel-specific. Conclusion:The MCC tool is acceptable to potential users, warranting further pilot-testing.

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Background: Smoking rates remain high in Vietnam, particularly among people living with HIV/AIDS (PLWH), but tobacco cessation services are not available in outpatient HIV clinics (OPCs). The research team is conducting a type II hybrid randomized controlled trial (RCT) comparing the cost-effectiveness of three tobacco cessation interventions among PLWH receiving care in HIV clinics in Vietnam. The study is simultaneously evaluating the implementation processes and outcomes of strategies aimed at increasing the implementation of tobacco dependence treatment (TDT) in the context of HIV care. This paper describes the systematic, theory-driven process of adapting intervention components and implementation strategies with demonstrated effectiveness in high-income countries, and more recently in Vietnam, to a new population (i.e., PLWH) and new clinical setting, prior to launching the trial. Methods: Data collection and analyses were guided by two implementation science frameworks and the socio-ecological model. Qualitative interviews were conducted with 13 health care providers and 24 patients in three OPCs. Workflow analyses were conducted in each OPC. Qualitative data were analyzed using rapid qualitative analysis procedures. Based on findings, components of the intervention and implementation strategies were adapted, followed by a 3-month pilot study in one OPC with 16 patients randomized to one of two intervention arms. Results: The primary adaptations included modifying the TDT intervention counseling content to address barriers to quitting among PLWH and Vietnamese sociocultural norms that support smoking cessation. Implementation strategies (i.e., training and system changes) were adapted to respond to provider- and clinic-level determinants of implementation effectiveness (e.g., knowledge gaps, OPC resource constraints, staffing structure, compatibility). Conclusions: Adaptations were facilitated through a mixed method, stakeholder (patient and health care provider, district health leader)-engaged evaluation of context-specific influences on intervention and implementation effectiveness. This data-driven approach to refining and adapting components aimed to optimize intervention effectiveness and implementation in the context of HIV care. Balancing pragmatism with rigor through the use of rapid analysis procedures and multiple methods increased the feasibility of the adaptation process. Trial registration: ClinicalTrials.gov NCT05162911 . Registered on December 16, 2021.

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Background: Hospitalization can be hazardous for older people, but most hospitals in Europe are not prepared to meet the unique needs of older adult inpatients. Adaptations of the physical environment, care processes, and staff knowledge and skills in geriatric care are essential to improve the quality of care for older people. An assessment of baseline organizational approaches to older adult care is an important first step toward recognizing the challenges organizations face when delivering acute care services to older adults and attempting to improve them. The Geriatric Institutional Assessment Profile could be a promising tool for this endeavor. Objectives: To describe a systematic process implemented across seven countries and languages that sought to develop valid and culturally-appropriate translations of the Geriatric Institutional Assessment Profile. Design: Cross-cultural instrument translation and content validation study. Setting and participants: Expert review panels comprised of 68 practicing nurses from seven European or EU associated countries (Austria (German), Belgium (Dutch), Denmark (Danish), Israel (Hebrew), Poland (Polish), Switzerland (German, French), and Turkey (Turkish)) evaluated cross-cultural relevance, including translation, of the Geriatric Institutional Assessment Profile. Method: A systematic approach to translating and validating a cross-cultural survey instrument, including back-to-back translation, adaptation, and evaluation of content validity using content validity indexing (CVI) techniques for each country and language, assessing translation and relevance content validity separately. The item, subscale and domain content validity index scores were calculated and adjusted for chance agreement among raters for all parts of the Geriatric Institutional Assessment Profile: the four subscales of geriatric care environment, the general knowledge about older adults subscale, and the clinical geriatric knowledge subscale. Consensus discussions among the raters then finalized translations. Results: CVI scores for relevance and translation were all in the “good” to “excellent” range. The geriatric care environment scale's CVI scores were 0.84 to 0.94 for relevance and 0.82 to 0.98 for translation. The clinical geriatric knowledge subscale's CVI scores were 0.83 to 0.97 for relevance and 0.94 to 0.98 for translation. The general knowledge about older adults subscale received high translation agreement (0.93 to 0.99) but slightly lower scores for relevance, ranging from 0.46 to 0.94. Conclusion: Study results provided preliminary evidence of the applicability and validity of a multi-factor measure of age-friendly care in diverse health care systems, in German, Dutch, Danish, Hebrew, Polish, French, and Turkish languages.

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Background Improving the recruitment and retention of underrepresented groups in all research areas is essential for health equity. However, achieving and retaining diverse samples is challenging. Barriers to recruitment and retention of diverse participants include socioeconomic and cultural factors and practical challenges (e.g., time and travel commitments). Objectives The purpose of this article is to describe the successful recruitment and retention strategies used by two related studies within a P20 center funded by the National Institute of Nursing Research focused on precision health research in diverse populations with multiple chronic conditions, including metabolic syndrome. Methods To address the complexity, biodiversity, and effect of metabolic syndrome and multiple chronic conditions, we developed culturally appropriate, multipronged recruitment and retention strategies for a pilot intervention study and a longitudinal observational pilot study within our P20 center. The following are the underlying principles that guided the recruitment and retention strategies: (a) flexibility, (b) active listening and bidirectional conversations, and (c) innovative problem solving. Results The intervention study (Pilot 1) enrolled 49 participants. The longitudinal observational study (Pilot 2) enrolled 45 participants. Women and racial/ethnic minorities were significantly represented in both. In Pilot 1, most of the participants completed the intervention and all phases of data collection. In Pilot 2, most participants completed all phases of data collection and chose to provide biorepository specimens. Discussion We developed a recruitment and retention plan building on standard strategies for a general medical population. Our real-world experiences informed the adaption of these strategies to facilitate the participation of individuals who often do not participate in research - specifically, women and racial/ethnic populations. Our experience across two pilot studies suggests that recruiting diverse populations should build flexibility in the research plan at the outset.

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BACKGROUND: Knowledge gaps and stigmatized perceptions regarding electroconvulsive therapy (ECT) among patients and health providers contribute to the underutilization of an important therapeutic modality. The proactive education of future advanced practice registered nurses (APRNs) provides an opportunity to optimize the use of this evidence-based clinical practice. AIMS: As part of a general course in psychiatry during the first year of nursing school, we dedicated 1 hour to treatment-refractory depression, including ECT, and a second hour to a summary discussion of mood disorders. We evaluated the efficacy of this didactic offering, which was co-taught by a psychiatrist and a psychiatric APRN. METHOD: At baseline, consenting students (n = 94) provided three words they associated with ECT and then completed three validated instruments: (a) Questionnaire on Attitudes and Knowledge of ECT, (b) Opening Minds Stigma Scale for Health Care Providers, and (c) Self-Stigma of Seeking Help. Among the 67 students who repeated the assessment at endpoint, 39 attended the ECT didactic (Intervention group, 58%) and 28 did not (Control, 42%). RESULTS: After completion of the 3-month course, students showed improvement across all measures (p <.001). The only outcomes that improved differentially between the Intervention and Control groups were the Questionnaire on Attitudes and Knowledge of ECT Attitudes and Knowledge scales (p =.01). Word choice valence associated with ECT shifted favorably by endpoint (p <.001). CONCLUSIONS: An educational intervention co-led by a psychiatric-mental health APRN had a significant impact on nursing students’ knowledge and perceptions of ECT. This approach can be readily implemented at other institutions. Future refinements will include the videotaped depiction of a simulated patient undergoing the consent, treatment, and recovery phases of ECT.

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Morbidity and mortality from COVID-19 have unduly affected older adults from racial and ethnic minority groups. In this article, we highlight the experiences and vulnerabilities of diverse older adults with complex health and social needs when their access to vital, but overlooked, community-based adult day service centers (ADSCs) was abruptly cut off during a pandemic. Pandemic-related ADSC closures left vulnerable older adults and their care partners without essential daily support and services, such as health monitoring and socialization. However, the magnitude of the impact of ADSC closures on well-being, particularly among members of racial/ethnic minority groups, has yet to be measured with any form of "big data" because large-scale, nationally representative data sets consisting of participant-level information and outcomes associated with ADSC participation do not yet exist. Unmet needs of older adults resulting from pandemic-related ADSC closures are underrecognized because of a lack of systematic data collection, undermining efforts to achieve health equity. We call on ADSCs to link rigorous collection of racial and ethnic data to quality measures of access to equitable "age-friendly" care as a means of better supporting diverse community-dwelling older adults beyond the COVID-19 pandemic.