Developing a community-engaged wheelchair exercise program for persons with MS: community advisory board formation and feedback

Author(s):  
Stephanie L. Silveira ◽  
Katherine Froehlich-Grobe ◽  
Robert W. Motl
2019 ◽  
Vol 27 (3) ◽  
pp. 56-64
Author(s):  
Jacob R. Milnor ◽  
Clarice Silva Santana ◽  
Alexander J. Martos ◽  
Jose Henrique Pilotto ◽  
Claudia Teresa Viera de Souza

Introduction: Brazil’s HIV burden has greatly increased over the past decade, especially for socially marginalized and vulnerable groups such as adolescents, women, and men who have sex with men. The reasoning for worsening HIV outcomes is complex, but ongoing economic and political crises have placed extreme operational and financial burdens on both the public health system and HIV-related civil society, affecting both treatment and prevention efforts and delivery. Context: Community-based HIV-related health-promotion activities have continued in Nova Iguaçu, Rio de Janeiro, despite these setbacks. These efforts have been led by a semi-independent community advisory board and engagement group based at the Hospital Geral de Nova Iguaçu with support from researchers based at the Oswaldo Cruz Foundation. Methods: The research team supported, documented, and participated in various activities led by the community advisory board and engagement group from 2017–2018 including meetings, community workshops/lectures, production of health promotion materials, and the dissemination of research findings. Results: The research team utilized the concepts of vernacular knowledge and critical pedagogy to describe and document the ongoing, bottom-up approach, community-led efforts of the community advisory board and engagement group. In particular, we describe the process of stakeholder engagement, popularization of research results, and resource sharing spearheaded by the community advisory board in Nova Iguaçu. Conclusion: The community advisory board demonstrates how community-led efforts are essential to HIV and AIDS response efforts in light of worsening HIV burdens and global shifts towards biomedicalization. Their HIV-related activities rely on existing community networks and resources with secondary support from a research team. This illustrates a key intervention point between traditional research and an empowering community mobilization that can inform similar efforts in other low-resource settings.


2017 ◽  
Vol 1 (S1) ◽  
pp. 54-54
Author(s):  
Jorge Delva ◽  
Adam Paberzs ◽  
Patricia Piechowski ◽  
Karen Calhoun ◽  
Diane Carr ◽  
...  

OBJECTIVES/SPECIFIC AIMS: To describe how Michigan Institute for Clinical & Health Research (MICHR) has engaged communities in its leadership and governance structure. This presentation will describe these practices, how they are being evaluated, and future plans for institute-wide engagement of communities in translational research. METHODS/STUDY POPULATION: Engaged partners from various communities across Michigan in various ways within MICHR’s Community Engagement Program. RESULTS/ANTICIPATED RESULTS: MICHR has utilized participatory practices in the development of the CAB to strengthen existing relationships and build new ones with potential partners. DISCUSSION/SIGNIFICANCE OF IMPACT: MICHR-wide Community Advisory Board (CAB) will ensure community voices are heard and utilized in leadership and strategic decisions for CTSA activities.


2021 ◽  
Vol 2 (1) ◽  
Author(s):  
Aaron J. Kruse-Diehr ◽  
Jill M. Oliveri ◽  
Robin C. Vanderpool ◽  
Mira L. Katz ◽  
Paul L. Reiter ◽  
...  

Abstract Background Colorectal cancer (CRC) screening rates are lower in Appalachian regions of the United States than in non-Appalachian regions. Given the availability of various screening modalities, there is critical need for culturally relevant interventions addressing multiple socioecological levels to reduce the regional CRC burden. In this report, we describe the development and baseline findings from year 1 of “Accelerating Colorectal Cancer Screening through Implementation Science (ACCSIS) in Appalachia,” a 5-year, National Cancer Institute Cancer MoonshotSM-funded multilevel intervention (MLI) project to increase screening in Appalachian Kentucky and Ohio primary care clinics. Methods Project development was theory-driven and included the establishment of both an external Scientific Advisory Board and a Community Advisory Board to provide guidance in conducting formative activities in two Appalachian counties: one in Kentucky and one in Ohio. Activities included identifying and describing the study communities and primary care clinics, selecting appropriate evidence-based interventions (EBIs), and conducting a pilot test of MLI strategies addressing patient, provider, clinic, and community needs. Results Key informant interviews identified multiple barriers to CRC screening, including fear of screening, test results, and financial concerns (patient level); lack of time and competing priorities (provider level); lack of reminder or tracking systems and staff burden (clinic level); and cultural issues, societal norms, and transportation (community level). With this information, investigators then offered clinics a menu of EBIs and strategies to address barriers at each level. Clinics selected individually tailored MLIs, including improvement of patient education materials, provision of provider education (resulting in increased knowledge, p = .003), enhancement of electronic health record (EHR) systems and development of clinic screening protocols, and implementation of community CRC awareness events, all of which promoted stool-based screening (i.e., FIT or FIT-DNA). Variability among clinics, including differences in EHR systems, was the most salient barrier to EBI implementation, particularly in terms of tracking follow-up of positive screening results, whereas the development of clinic-wide screening protocols was found to promote fidelity to EBI components. Conclusions Lessons learned from year 1 included increased recognition of variability among the clinics and how they function, appreciation for clinic staff and provider workload, and development of strategies to utilize EHR systems. These findings necessitated a modification of study design for subsequent years. Trial registration Trial NCT04427527 is registered at https://clinicaltrials.gov and was registered on June 11, 2020.


2010 ◽  
Vol 18 (1) ◽  
pp. 58-75 ◽  
Author(s):  
Anthony J. Silvestre ◽  
Sandra J. Quinn ◽  
Charles R. Rinaldo

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 211-211
Author(s):  
G Adriana Perez

Abstract Latino participation in ADRD research is essential to advance cognitive health equity. We present results of an adapted framework to increase recruitment and retention of older Latinos with ADRD and caregivers (CGs) in a timed-activity intervention. Framework factors include 3 structures with strategies informed by a Latino Community Advisory Board. For Characteristics of Study Processes, we included linguistically equivalent data collection procedures/measures, scheduled at times most convenient for participants/CGs. Participants were called weekly for questions/guidance with procedures. Intervention sessions built-in additional time to embed Latino cultural values: familismo, personalismo, confianza and respeto. Study Team Infrastructure, included bilingual/bicultural members/students; and trusted community partners to assist with participant referrals. For Preferences and Beliefs Toward Research, we conducted a series of focus groups to understand beliefs about “memory health” and perceptions of ADRD risks. Strategies yielded effective results. We reached our recruitment goal; started a wait-list of interested participants; had zero (n=0) attrition.


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