Community-Engaged Research with Vietnamese Americans to Pilot-Test a Dementia Caregiver Intervention.
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SUBMITTER: Meyer OL
PROVIDER: S-EPMC7584753 | biostudies-literature |
REPOSITORIES: biostudies-literature
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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: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.clini?caltr?ials.gov; Unique identifier: NCT02301299.
| S-EPMC7726971 | biostudies-literature
Project description:Human 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).This 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.Development of CIRTification involved an extensive literature review, consultation with stakeholders including community partners, academic researchers, and human research protection program personnel.The 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: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
Project description:The transfer of new discoveries into both clinical practice and the wider community calls for reliance on interdisciplinary translational teams that include researchers with different areas of expertise, representatives of health care systems and community organizations, and patients. Engaging new stakeholders in research, however, calls for a reconsideration or expansion of the meaning of ethics in translational research. We explored expert opinion on the applicability of ethical principles commonly practiced in community-engaged research (CEnR) to translational research. To do so, we conducted 2 online, modified-Delphi panels with 63 expert stakeholders who iteratively rated and discussed 9 ethical principles commonly used in CEnR in terms of their importance and feasibility for use in translational research. The RAND/UCLA appropriateness method was used to analyze the data and determine agreement and disagreement among participating experts. Both panels agreed that ethical translational research should be "grounded in trust." Although the academic panel endorsed "culturally appropriate" and "forthcoming with community about study risks and benefits," the mixed academic-community panel endorsed "scientifically valid" and "ready to involve community in interpretation and dissemination" as important and feasible principles of ethical translational research. These findings suggest that in addition to protecting human subjects, contemporary translational science models need to account for the interests of, and owe ethical obligations to, members of the investigative team and the community at large.
| S-EPMC4833614 | biostudies-literature
Project description:Policy Points Community-engaged research (CEnR) engenders meaningful academic-community partnerships to improve research quality and health outcomes. CEnR has increasingly been adopted by health care systems, funders, and communities looking for solutions to intractable problems. It has been difficult to systematically measure CEnR's impact, as most evaluations focus on project-specific outcomes. Similarly, partners have struggled with identifying appropriate measures to assess outcomes of interest. To make a case for CEnR's value, we must demonstrate the impacts of CEnR over time. We compiled recent measures and developed an interactive data visualization to facilitate more consistent measurement of CEnR's theoretical domains.ContextCommunity-engaged research (CEnR) aims to engender meaningful academic-community partnerships to increase research quality and impact, improve individual and community health, and build capacity for uptake of evidence-based practices. Given the urgency to solve society's pressing public health problems and increasing competition for funding, it is important to demonstrate CEnR's value. Most evaluations focus on project-specific outcomes, making it difficult to demonstrate CEnR's broader impact. Moreover, it is challenging for partnerships to identify assessments of interest beyond process measures. We conducted a mapping review to help partnerships find and select measures to evaluate CEnR projects and to characterize areas where further development of measures is needed.MethodsWe searched electronic bibliographic databases using relevant search terms from 2009 to 2018 and scanned CEnR projects to identify unpublished measures. Through review and reduction, we found 69 measures of CEnR's context, process, or outcomes that are potentially generalizable beyond a specific health condition or population. We abstracted data from descriptions of each measure to catalog purpose, aim (context, process, or outcome), and specific domains being measured.FindingsWe identified 28 measures of the conditions under which CEnR is conducted and factors to support effective academic-community collaboration (context); 43 measures evaluating constructs such as group dynamics and trust (process); and 43 measures of impacts such as benefits and challenges of CEnR participation and system and capacity changes (outcomes).ConclusionsWe found substantial variation in how academic-community partnerships conceptualize and define even similar domains. Achieving more consistency in how partnerships evaluate key constructs could reduce measurement confusion apparent in the literature. A hybrid approach whereby partnerships discuss common metrics and develop locally important measures can address CEnR's multiple goals. Our accessible data visualization serves as a convenient resource to support partnerships' evaluation goals and may help to build the evidence base for CEnR through the use of common measures across studies.
| S-EPMC7296434 | biostudies-literature
Project description:The objective of this manuscript is to describe a method of integrating baccalaureate nursing student service-learning experiences within a randomized controlled trial conducted in a community setting to facilitate student learning and expose students to the nursing scientist role. Placing students in a research service-learning experience involved several steps beginning with finding a nursing program for potential collaboration where this service-learning opportunity would be a natural fit with course content and formalizing the collaboration between the two institutions. Upon receipt of research grant funding, researchers and course faculty worked to navigate logistics and place students within the service-learning experience. After research training, 35 students assisted with intervention delivery and completed course assignments to document their learning. The collaboration described between a community-engaged research team from a research-intensive university and course faculty from a distant institution could be replicated with all types of nursing research.
| S-EPMC7736640 | biostudies-literature