Community-Engaged Research with Vietnamese Americans to Pilot-Test a Dementia Caregiver Intervention.
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ABSTRACT:
SUBMITTER: Meyer OL
PROVIDER: S-EPMC7584753 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:There is a dearth of research on cognitive aging and dementia in Asian Americans, particularly Vietnamese Americans, who are the fourth largest Asian subgroup in the United States. The National Institutes of Health is mandated to make certain that racially and ethnically diverse populations are included in clinical research. Despite the widespread recognition to ensure that research findings can be generalizable to all groups, there are no estimates of the prevalence or incidence of mild cognitive impairment and Alzheimer's disease and related dementias (ADRD) in Vietnamese Americans, nor do we understand ADRD risk and protective factors in this group. In this article, we posit that studying Vietnamese Americans contributes to a better understanding of ADRD in general and offers unique opportunities for elucidating life course and sociocultural factors that contribute to cognitive aging disparities. That is, the unique context of Vietnamese Americans may provide understanding in terms of within-group heterogeneity and key factors in ADRD and cognitive aging. Here, we provide a brief history of Vietnamese American immigration and describe the large but often ignored heterogeneity of Asian Americans in the United States, elucidate how early life adversity and stress might influence late-life cognitive aging, and provide a basis for the role of sociocultural and health factors in the study of Vietnamese cognitive aging disparities. Research with older Vietnamese Americans provides a unique and timely opportunity to more fully delineate the factors that contribute to ADRD disparities for all populations.
| S-EPMC10209515 | biostudies-literature
Project description:Community-engaged research is understood as existing on a continuum from less to more community engagement, defined by participation and decision-making authority. It has been widely assumed that more is better than less engagement. However, we argue that what makes for good community engagement is not simply the extent but the fit or alignment between the intended approach and the various contexts shaping the research projects. This article draws on case studies from three Community Engagement Cores (CECs) of NIEHS-funded Environmental Health Science Core Centers (Harvard University, UC Davis and University of Arizona,) to illustrate the ways in which community engagement approaches have been fit to different contexts and the successes and challenges experienced in each case. We analyze the processes through which the CECs work with researchers and community leaders to develop place-based community engagement approaches and find that different strategies are called for to fit distinct contexts. We find that alignment of the scale and scope of the environmental health issue and related research project, the capacities and resources of the researchers and community leaders, and the influences of the sociopolitical environment are critical for understanding and designing effective and equitable engagement approaches. These cases demonstrate that the types and degrees of alignment in community-engaged research projects are dynamic and evolve over time. Based on this analysis, we recommend that CBPR scholars and practitioners select a range of project planning and management techniques for designing and implementing their collaborative research approaches and both expect and allow for the dynamic and changing nature of alignment.
| S-EPMC7068394 | biostudies-literature
Project description:Health research has relied on ethical principles, such as those of the Belmont Report, to protect the rights and well-being of research participants. Community-based participatory research (CBPR), however, must also consider the rights and well-being of communities. This requires additional ethical considerations that have been extensively discussed but not synthesized in the CBPR literature. We conducted a comprehensive thematic literature review and summarized empirically grounded discussions of ethics in CBPR, with a focus on the value of the Belmont principles in CBPR, additional essential components of ethical CBPR, the ethical challenges CBPR practitioners face, and strategies to ensure that CBPR meets ethical standards. Our study provides a foundation for developing a working definition and a conceptual model of ethical CBPR.
| S-EPMC3828990 | biostudies-literature
Project description:The degree to which artificial intelligence healthcare research is informed by data and stakeholders from community settings has not been previously described. As communities are the principal location of healthcare delivery, engaging them could represent an important opportunity to improve scientific quality. This scoping review systematically maps what is known and unknown about community-engaged artificial intelligence research and identifies opportunities to optimize the generalizability of these applications through involvement of community stakeholders and data throughout model development, validation, and implementation. Embase, PubMed, and MEDLINE databases were searched for articles describing artificial intelligence or machine learning healthcare applications with community involvement in model development, validation, or implementation. Model architecture and performance, the nature of community engagement, and barriers or facilitators to community engagement were reported according to PRISMA extension for Scoping Reviews guidelines. Of approximately 10,880 articles describing artificial intelligence healthcare applications, 21 (0.2%) described community involvement. All articles derived data from community settings, most commonly by leveraging existing datasets and sources that included community subjects, and often bolstered by internet-based data acquisition and subject recruitment. Only one article described inclusion of community stakeholders in designing an application-a natural language processing model that detected cases of likely child abuse with 90% accuracy using harmonized electronic health record notes from both hospital and community practice settings. The primary barrier to including community-derived data was small sample sizes, which may have affected 11 of the 21 studies (53%), introducing substantial risk for overfitting that threatens generalizability. Community engagement in artificial intelligence healthcare application development, validation, or implementation is rare. As healthcare delivery occurs primarily in community settings, investigators should consider engaging community stakeholders in user-centered design, usability, and clinical implementation studies to optimize generalizability.
| S-EPMC11343451 | biostudies-literature
Project description:Background We evaluated a community-engaged stroke preparedness intervention that aimed to increase early hospital arrival and emergency medical services (EMS) utilization among patients with stroke in the South Side of Chicago, Illinois. Methods and Results We compared change in early hospital arrival (<3 hours from symptom onset) and EMS utilization before and after our intervention among patients with confirmed ischemic stroke at an intervention hospital on the South Side of Chicago with concurrent data from 6 hospitals in nonintervention communities on the North Side of Chicago and 17 hospitals in St Louis, Missouri. We assessed EMS utilization for suspected stroke secondarily, using geospatial information systems analysis of Chicago ambulance transports before and after our intervention. Among 21 497 patients with confirmed ischemic stroke across all sites, early arrival rates at the intervention hospital increased by 0.5% per month (95% CI, -0.2% to 1.2%) after intervention compared with the preintervention period but were not different from North Side Chicago hospitals (difference of -0.3% per month [95% CI, -0.12% to 0.06%]) or St Louis hospitals (difference of 0.7% per month [95% CI, -0.1% to 1.4%]). EMS utilization at the intervention hospital decreased by 0.8% per month (95% CI, -1.7% to 0.2%) but was not different from North Side Chicago hospitals (difference of 0.004% per month [95% CI, -1.1% to 1.1%]) or St Louis hospitals (difference of -0.7% per month [95% CI, -1.7% to 0.3%]). EMS utilization for suspected stroke increased in the areas surrounding the intervention hospital (odds ratio [OR], 1.4; 95% CI, 1.2-1.6) and in the South Side (OR, 1.2; 95% CI, 1.1-1.3), but not in the North Side (OR, 1.0; 95% CI, 0.9-1.1). Conclusions Following a community stroke preparedness intervention, early hospital arrival and EMS utilization for confirmed ischemic stroke did not increase. However, ambulance transports for suspected stroke increased in the intervention community compared with other regions. Registration URL: https://www.clinicaltrials.gov; Unique identifier: NCT02301299.
| S-EPMC7726971 | biostudies-literature
Project description:BackgroundHuman research ethics training should provide relevant, meaningful information and build skills. Compliance should not be the only goal; training should also enhance knowledge, skills, and capacity. However, most currently available human research ethics training programs are geared toward learners who already have some research experience and working knowledge of research methods (e.g., graduate students, junior researchers); many community partners, however, have little or no prior exposure to research. More important, standard training programs do not adequately address the unique context of community-engaged research (CEnR).ObjectivesThis article describes the development process, final curricular materials, and suggestions for successful implementation of CIRTification, a human research ethics training program designed specifically for community research partners who will be working on the "frontlines" of research.MethodsDevelopment of CIRTification involved an extensive literature review, consultation with stakeholders including community partners, academic researchers, and human research protection program personnel.ConclusionsThe curriculum, as well as information and materials to help potential users promote acceptance of the curriculum by their local institutional review boards (IRBs), are freely available online at www.go.uic.edu/CIRT. Ideally, community research partners who complete CIRTification will not only learn about the importance of protecting research participants but also be empowered to substantially contribute to the ethical practices of their respective research collaborations.
| S-EPMC4711932 | biostudies-literature
Project description:BackgroundCardiovascular disease (CVD) risk increases substantially during perimenopause. Latinas have a significantly worse CVD risk factor profile than non-Hispanic White women, potentially due to multiple sociocultural and environmental factors. To date, interdisciplinary interventions have not focused on improving nutrition, physical activity, stress management, and biologic CVD risk in perimenopausal Latinas. The purpose of this study is to examine the feasibility and initial efficacy of a multi-component intervention to reduce CVD risk in perimenopausal Latinas.MethodsThis is a two-group, repeated measures experimental study. Eighty perimenopausal Latinas (age 40-55 years) from two community groups will be randomized: one group will complete the intervention; the other will be a wait-list control. The intervention consists of 12-weekly sessions (education, physical activity, stress management, coping skills training), followed by 3 months of continued support, and 6 months of skill maintenance on their own. The primary outcomes include arterial stiffness, blood pressure, lipids, and blood glucose. Secondary outcomes are health behaviors (nutrition, physical activity, sleep, coping strategies), self-efficacy, and other biological factors related to CVD risk (adiposity, C-reactive protein, hair cortisol, vasomotor symptoms). We will assess changes in outcomes from Time 1 (baseline) to Time 2 (6 months) and Time 3 (12 months) using general linear mixed models to test the hypotheses. We will also evaluate the feasibility of the intervention by assessing enrollment and retention rates, barriers, and facilitators to enrollment, intervention fidelity, the suitability of study procedures, and participant satisfaction with the intervention and study protocol. We hypothesize the intervention group will decrease biologic CVD risk and improve health behaviors and self-efficacy significantly more than the wait-list control.DiscussionResults from this study will contribute to knowledge on the feasibility of behavioral interventions, including stress management and coping skills training, which could reduce CVD burden among perimenopausal Latinas. Because Hispanic/Latinos are the largest ethnic minority in the United States (US), progress regarding CVD risk among perimenopausal Latinas may lead to significant improvement in the overall CVD burden in the US.Trial registrationProspectively registered, NCT04313751 (03/19/2020), Protocol version 1.0.
| S-EPMC7786946 | biostudies-literature
Project description:In our study, aimed at examining the effectiveness and impact of the Hong Kong Benchmarks (Community) Pilot Program, a career and life development (CLD) intervention program targeting non-engaged youth (NEY) in Hong Kong, we employed a pretest-posttest quasi-experimental design to compare changes in career-related competencies between a pilot group (N = 289) and a comparison group (N = 160). We also conducted five focus group interviews with the leaders of nongovernmental organizations, social workers, NEY, parents, and employers to explore the program's impacts on the CLD service provisions. Our quantitative results indicate that the piloting group showed greater improvement in two career-related competencies-youth career development competency and career and life development hope-than the comparison group. Meanwhile, our qualitative results suggest both the benefits and difficulties experienced by stakeholders in the program. The findings thus provide preliminary evidence of the Hong Kong Benchmarks (Community) Pilot Program's positive impacts on NEY and other important stakeholders. The implications of expanding the existing program and theorizing the community-based benchmark approach are also discussed.
| S-EPMC10115995 | biostudies-literature
Project description:To examine the effects of a telephone-delivered intervention, Family Intervention: Telephone Tracking-Caregiver (FITT-C), on community support and healthcare use by dementia caregivers.Randomized, controlled trial.Academic medical center.Dyads (n = 250) of distressed informal dementia caregivers and care recipients.Caregivers were randomly assigned to receive the FITT-C (n = 133) or telephone support (TS; n = 117). Both groups received 16 telephone contacts from a master's-level therapist over 6 months. The FITT-C intervention provided psychoeducation, problem solving, and other directive approaches based on assessment of critical areas (e.g., mood, behavior, family functioning, social support). TS provided supportive therapeutic strategies.Outcome variables were caregiver report of community support service use, number of visits to the emergency department (ED) for caregivers and care recipients, and hospital stays for caregivers during the interventions.Intervention groups did not differ in demographic characteristics, use of support services, or use of healthcare resources at baseline. Caregivers who received the FITT-C used community support services at end of treatment significantly more than those receiving TS (P = .02). FITT-C caregivers had a significantly lower rate of ED visits (rate difference 9.5%, P = .048) and hospital stays (rate difference 11.4%, P = .01) over the 6-month course of the intervention than TS caregivers. Care recipient use of community or medical resources did not differ according to group.An entirely telephone-delivered intervention was effective in increasing caregiver engagement in community resources and reducing caregiver use of hospital-based healthcare resources. Results highlight the potential effect of FITT-C on healthcare use.
| S-EPMC5510656 | biostudies-literature
Project description:BackgroundThere are many systematic reviews and meta-analyses (SRs) of interventions for family caregivers of persons with Alzheimer's disease or a related dementia. A challenge when synthesizing the efficacy of dementia caregiver interventions is the potential discrepancy in how they are categorized. The objective of this study was to systematically examine inconsistencies in how dementia caregiver interventions are classified.MethodsWe searched Ovid Medline®, Ovid PsycINFO®, Ovid Embase®, and the Cochrane Library to identify previous SRs published and indexed in bibliographic databases through January 2015. Following a graphical network analysis, open-coding of classification definitions was conducted. A descriptive analysis was then completed to examine classification consistency of individual interventions across SR grouping labels.ResultsTwenty-three SRs were identified. A graphical network analysis revealed a significant amount of overlap in individual studies included across SRs, but stark differences in how reviews labeled or categorized them. The qualitative content analysis identified seven themes; one of these, content of the intervention, was used to compare classification consistency. When subjecting the classification of interventions to descriptive empirical analysis, extensive inconsistency was apparent.ConclusionsThe substantial inconsistency in how dementia caregiver interventions are classified across SRs has hindered the science and practice of dementia caregiver interventions. Specifically, accurate reporting of intervention components and SRs would allow for more precise assessments of efficacy as well as a fuller determination of how caregiver interventions can best yield benefits for caregivers and persons with dementia.
| S-EPMC5767314 | biostudies-literature