Progress in Community Health Partnerships-Research Education and Action最新文献

Background: South Asian Canadians are not proportionally represented as participants in health research studies and can be attributed to participant-related and researcher-related factors.

Objectives: The South Asian Health Research Collaborative aimed to determine the top 10 health research priorities for the South Asian community by building engagement in health research.

Methods: South Asian Health Research Collaborative convened researchers, health-care providers, decision makers, and members of the South Asian community to build engagement in health research and identify the health research priorities of the South Asian community.

Results: The top three research questions related to reducing barriers to mental health services, improving access to diabetes-related dietary information, and exploring the use of complementary and alternative medicine alongside Western medicine.

Conclusions: The identified priorities serve as a foundation for a collaborative research agenda between researchers and the South Asian community, emphasizing the importance of meaningful partnerships to address barriers to participation in health research studies.

The shutdowns associated with the COVID-19 pandemic had immediate effects on nonprofit organizations, disrupting their abilities to provide resources to the vulnerable populations they serve, and leaving many residents without supports they needed. In Cleveland, Ohio, a community-based research network developed a series of publicly available podcast interview spotlights with local nonprofits during the shutdown to describe how they had shifted to continue to meet their communities' needs. The organizations shared experiences of adaptation and innovation, collaborative efforts, and community engagement strategies tailored to community members' emotional responses to the pandemic and needs. The organizations' abilities to stay resilient at a difficult time highlight the importance of staying connected to the populations served and could inform nonprofits' strategies and perspectives in navigating unprecedented challenges. The experiences documented in this research may be a useful resource for nonprofit leaders, policymakers, and researchers seeking effective strategies to enhance organizational resilience when serving the community in times of crisis.

Background: Black people with intellectual and developmental disabilities (IDD) are disproportionately impacted by health disparities and endure distinctive systemic challenges as a result of their intersecting identities.

Objectives: This manuscript describes a collaborative project between university researchers, people with IDD and their care partners, and providers to understand contextual and individual characteristics that influence equitable health services access and use.

Methods: The project follows a critical participatory action research approach to address issues of power and equity at the intersections of race, gender, and disability. Data collection strategies included individual semi-structured interviews and focus groups, as well as interactive activities to facilitate deeper discussion.

Lessons learned: We describe strategies to manage challenges of delayed recruitment, power sharing, equitable and inclusive engagement, and dissemination.

Conclusions: Lessons learned underscore the diverse experiential expertise of Black people with IDD, their care partners, and providers in the co-creation of knowledge, the importance of opportunities for partners from different stakeholder groups to cultivate relationships as part of the research process, co-reflexivity as instrumental to assessing and reassessing engagement processes in real time, and implementation of inclusive strategies for participation in dissemination activities.

Accessible, high-quality human research protections (HRP) training is essential to the ethical conduct of research. Here we describe the development and implementation of CIRTification Online, a comprehensive, freely available, and now completely online HRP training program designed specifically for community researchers. We characterize the over 5,800 individuals and 58 institutions that have used CIRTification Online during its first five years of availability. CIRTification users are diverse in terms of institutional affiliations, age, race and ethnicity, and research experience and roles. Formal adoption by academic research institutions has supported consistent increases in usage. Individuals affiliated with community-based organizations as well as large and small academic research institutions around the country (and some abroad) also use CIRTification. The steady increase in uptake by individuals as well as formal adoption by institutions suggests that CIRTification meets the HRP training needs of many community researchers.

Community-based participatory research emphasizes building collaborative, equitable partnerships between researchers and community experts. Community advisory boards (CABs) are integral to community-based participatory research. The University of California, Los Angles-Charles R. Drew University of Medicine and Science Center for AIDS Research (UCLA-CDU CFAR)'s standing CAB consists of community experts, most with lived experience, across Los Angeles County, California. The UCLA-CDU CFAR CAB provides input on CFAR members' individual research projects, in contrast to study-specific CABs, which are dedicated to specific research projects. The CAB developed best practices for researchers on how to present to standing CABs, including general communication strategies and guidance for pre- and post-presentation activities (e.g., slide preparation, post-meeting follow-up). The strategies were developed and refined over numerous research presentations, for adaptation by other community-academic teams. Use of these strategies can lead to more productive partnerships with CABs and facilitate meaningful community feedback on research from initiation to completion.

Background: Best practices for community-engaged research (CEnR) partnerships to promote health equity can mitigate barriers to health care, especially during public health crises. They also establish value congruence specific to the promotion of health equity for underserved communities.

Objectives: Our goal was to co-develop best practices for CEnR partnerships promoting health equity.

Methods: A purposeful sample of 9 researchers and 13 community members with experience in CEnR participated in the study. A first version of the best practices document was developed based on feedback from community members during pre-engagement activities that sought to co-design a sustainable model for trustworthy CEnR partnerships. The best practices document was further developed from compilation and categorization of comments from study participants in virtual meetings.

Results: The best practices document included general guiding principles for CEnR partnerships promoting health equity and specific guidelines for partnerships relevant to COVID-19 testing. Foundational practices for all CEnR partnerships include the development of shared goals, accountability, and transparency. Guidelines specific to the social, ethical, and behavioral implications (SEBI) of COVID-19 testing include identifying community resources and challenges, identifying and communicating the value and risks associated with COVID-19 and COVID-19 testing, and minimizing risks and hardships relevant to COVID-19 testing.

Conclusions: Best practices for CEnR partnerships promoting health equity should be tailored to the specific CEnR partnership. Future research could explore how community members and researchers implement CEnR partnership best practices to promote health equity for underserved communities.

Background: A history of exclusion and barriers to research participation exists for autistic individuals. Barriers to full community engagement have left under-engaged members of the autism community feeling isolated, frustrated, distrustful, and less informed about opportunities for research participation.

Objectives: This study aimed to identify gaps in community-engaged research (CEnR) approaches in autism research by examining autism stakeholders' (autistic adults, autism caregivers/parents, and service providers) perspectives about the risks, benefits and gaps in CEnR and suggestions on addressing the gaps related to autism research priorities.

Methods: Via qualitative narrative inquiry (n = 53), using a 16-item semi-structured instrument, we collected data from autism stakeholders representing different lived experiences and perspectives among autism communities. We primarily recruited via major autism advocacy and research organizations. Transcripts from a focus group (n = 6) and individual interviews (n = 47) were thematically coded.

Results: Participants expressed a lack of diverse representation in autism CEnR and in autism research subject populations. They suggested that an approach to community engagement that includes those often excluded from the process, and creates shared ownership in the decision-making process and a trusted platform for the autism community across demographic and diagnostic characteristics is important for understanding how to translate that information into effective and inclusive approaches.

Conclusions: Autism stakeholders value research inclusivity, are interested in research participation, have the ability to make their own participation decisions with and without support from others (dependent on their preferences), and believe that research about adults with autism is important and beneficial towards addressing complex problems related to access to care.

Background: New public policies support the growth of the community health worker (CHW) and peer support specialist/peer recovery coach (peer) workforces in health and behavioral health settings. In their roles as a bridge to medical teams, they often face complex interpersonal situations.

Objectives: The current project used community-engaged methodologies to develop and evaluate a series of e-learning modules designed to teach behavioral health-related skills to CHWs and peers. The modules focused on motivational interviewing (MI) and behavioral activation (BA) approaches.

Methods: The project team consisted of university faculty and a community advisory board (CAB) of frontline CHWs and peers as well as representatives from local community organizations and the state Department of Health and Human Services. The community advisory board and faculty worked collaboratively to design, implement, and evaluate the modules. Participants completed pre- and immediate post-learning surveys (n = 87) and 3-month follow-up surveys (n = 23). We found that 75% were extremely satisfied and 23% were somewhat satisfied. Planned frequency of using the skills increased by 18% (MI) and 25% (behavioral activation). There was a 27% improvement in feeling prepared to use MI and a 16% improvement in feeling prepared to set goals and implement action plans. At 3 months, 100% of respondents reported having applied something they learned to their work. After project completion, the university transferred ownership of the modules to a community organization for sustainability.

Conclusions: Beyond degree program learners, universities can provide education to the community through innovative partnerships. E-learning modules are one satisfactory option for providing sustainable education to the community.

Background: Many Burmese refugees to the United States experience multimorbidity primarily from displacement. Immigrant and refugee community leaders have identified communication with service providers and minimal community support as challenges.

Objectives: To center the experiences and perceptions of Burmese refugees regarding health and well-being.

Methods: In this qualitative descriptive community-based participatory research study, 18 Burmese participants across 9 families engaged with researchers to generate and analyze data through the participatory group level assessment method.

Results: We identified four main themes and corresponding community needs: Navigate cultural differences: need to balance Burmese cultural lifeways and U.S. society; complex journey of information access: need for qualified interpreters and cultural brokers; family health care and social support: need for collective relationship-based decision-making; and system and institutional barriers: need to eliminate discontinuity in holistic health care and towards basic health needs.

Conclusions: Providers must recognize the specific health needs and develop culturally protective practices.