Community-academic partnerships in HIV-related research: a systematic literature review of theory and practice.
ABSTRACT: Community involvement in HIV research has increased over recent years, enhancing community-academic partnerships. Several terms have been used to describe community participation in research. Clarification is needed to determine whether these terms are synonymous or actually describe different research processes. In addition, it remains unclear if the role that communities play in the actual research process follows the recommendations given in theoretical frameworks of community-academia research.The objective of this study is to review the existing terms and definitions regarding community-academic partnerships and assess how studies are implementing these in relation to conceptual definitions.A systematic literature review was conducted in PubMed. Two reviewers independently assessed each article, applying the following inclusion criteria: the article must be published in English before 2013; it must provide an explicit definition and/or defining methodology for a term describing research with a community component; and it has to refer to HIV or AIDS, reproductive health and/or STDs. When disagreements about the relevance of an article emerged, a third reviewer was involved until concordance was reached. Data were extracted by one reviewer and independently verified by a second. Qualitative data were analyzed using MaxQDA for content and thematic analyses while quantitative data were analyzed using descriptive statistics. Community feedback on data analysis and presentation of results was also incorporated.In total, 246 articles were retrieved, 159 of which fulfilled the inclusion criteria. The number of studies that included community participation in the field of HIV research increased between 1991 and 2012, and the terms used to describe these activities have changed, moving away from action research (AR) to participatory action research (PAR), community-based research (CBR) and community-based participatory research (CBPR), with the latter being the most commonly used term. While definitions of all terms had common characteristics (e.g. participation of community in research process), they varied with regard to the emphasis placed on these characteristics. The nature of community participation in reviewed studies differed considerably from that described in theoretical models.This study indicates the increase of participatory approaches in HIV research and underlines the need for clarification of terms and a framework providing orientation to community-academia partnerships.
Project description:Community engagement and rigorous science are necessary to address health issues. Increasingly, community health organizations are asked to partner in research. To strengthen such community organization-academic partnerships, increase research capacity in community organizations, and facilitate equitable partnered research, the Partners in Education Evaluation and Research (PEER) program was developed. The program implements an 18-month structured research curriculum for one mid-level employee of a health-focused community-based organization with an organizational mentor and a Case Western Reserve University faculty member as partners.The PEER program was developed and guided by a community-academic advisory committee and was designed to impact the research capacity of organizations through didactic modules and partnered research in the experiential phase. Active participation of community organizations and faculty during all phases of the program provided for bidirectional learning and understanding of the challenges of community-engaged health research. The pilot program evaluation used qualitative and quantitative data collection techniques, including experiences of the participants assessed through surveys, formal group and individual interviews, phone calls, and discussions. Statistical analysis of the change in fellows' pre-test and post-test survey scores were conducted using paired sample t tests. The small sample size is recognized by the authors as a limitation of the evaluation methods and would potentially be resolved by including more cohort data as the program progresses. Qualitative data were reviewed by two program staff using content and narrative analysis to identify themes, describe and assess group phenomena and determine program improvements.The objective of PEER is to create equitable partnerships between community organizations and academic partners to further research capacity in said organizations and develop mutually beneficial research partnerships between academia and community organizations.PEER demonstrates a commitment to successfully developing sustainable research capacity growth in community organizations, and improved partnered research with academic institutions.
Project description:INTRODUCTION:A participatory approach to co-creating new knowledge in health research has gained significant momentum in recent decades. This is founded on the described benefits of community-based participatory research (CBPR), such as increased relevance of research for those who must act on its findings. This has prompted researchers to better understand how CBPR functions to achieve these benefits through building sustainable research partnerships. Several studies have identified 'trust' as a key mechanism to achieve sustainable partnerships, which themselves constitute social networks. Although existing literature discuss trust and CBPR, or trust and social networks, preliminary searches reveal that none link all three concepts of trust, CBPR and social networks. Thus, we present our scoping review protocol to systematically review and synthesise the literature exploring how trust is conceptualised, operationalised and measured in CBPR and social networks. METHODS AND ANALYSIS:This protocol follows guidelines from Levac et al (Scoping studies: advancing themethodology. Implement Sci 2010;5:69), which follow the methodological framework of Arksey and O'Malley. This scoping review explores several electronic databases including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library, Google Scholar and PsychINFO. Grey literature such as theses/dissertations and reports will be included. A search strategy was identified and agreed on by the team in conjunction with a research librarian. Two independent reviewers will screen articles by title and abstract, then by full text based on pre-determined exclusion/inclusion criteria. A third reviewer will arbitrate discrepancies regarding inclusions/exclusions. We plan to incorporate a thematic analysis. ETHICS AND DISSEMINATION:Ethics is not required for this review specifically. It is a component of a larger study that received ethical approval from the University of Limerick research ethics committee (#2018_05_12_EHS). Translation of results to key domains is integrated through active collaboration of stakeholders from community, health services and academic sectors. Findings will be disseminated through academic conferences, and peer review publications targeting public and patient involvement in health research.
Project description:BACKGROUND:Conducting research in partnership with stakeholders (e.g. policy-makers, practitioners, organisations, patients) is a promising and popular approach to improving the implementation of research findings in policy and practice. This study aimed to identify the principles, strategies, outcomes and impacts reported in different types of reviews of research partnerships in order to obtain a better understanding of the scope of the research partnership literature. METHODS:This review of reviews is part of a Coordinated Multicenter Team approach to synthesise the research partnership literature with five conceptually linked literature reviews. The main research question was 'What principles, strategies, outcomes and impacts are reported in different types of research partnership approaches?'. We included articles describing a literature review of research partnerships using a systematic search strategy. We used an adapted version of the Revised Assessment of Multiple Systematic Reviews tool to assess quality. Nine electronic databases were searched from inception to April 2018. Principles, strategies, outcomes and impacts were extracted from the included reviews and analysed using direct content analysis. RESULTS:We included 86 reviews using terms describing several research partnership approaches (e.g. community-based participatory research, participatory research, integrated knowledge translation). After the analyses, we synthesised 17 overarching principles and 11 overarching strategies and grouped them into one of the following subcategories: relationship between partners; co-production of knowledge; meaningful stakeholder engagement; capacity-building, support and resources; communication process; and ethical issues related to the collaborative research activities. Similarly, we synthesised 20 overarching outcomes and impacts on researchers, stakeholders, the community or society, and the research process. CONCLUSIONS:This review of reviews is the first that presents overarching principles, strategies, outcomes and impacts of research partnerships. This review is unique in scope as we synthesised literature across multiple research areas, involving different stakeholder groups. Our findings can be used as a first step to guide the initiation and maintenance of research partnerships and to create a classification system of the key domains of research partnerships, which may improve reporting consistency in the research partnership literature. TRIAL REGISTRATION:This study is registered via Open Science Framework: https://doi.org/10.17605/OSF.IO/GVR7Y.
Project description:Environmental health research involving community participation has increased substantially since the National Institute of Environmental Health Sciences (NIEHS) environmental justice and community-based participatory research (CBPR) partnerships began in the mid-1990s. The goals of these partnerships are to inform and empower better decisions about exposures, foster trust, and generate scientific knowledge to reduce environmental health disparities in low-income, minority communities. Peer-reviewed publication and clinical health outcomes alone are inadequate criteria to judge the success of projects in meeting these goals; therefore, new strategies for evaluating success are needed.We reviewed the methods used to evaluate our project, "Linking Breast Cancer Advocacy and Environmental Justice," to help identify successful CBPR methods and to assist other teams in documenting effectiveness. Although our project precedes the development of the NIEHS Evaluation Metrics Manual, a schema to evaluate the success of projects funded through the Partnerships in Environmental Public Health (PEPH), our work reported here illustrates the record keeping and self-reflection anticipated in NIEHS's PEPH.Evaluation strategies should assess how CBPR partnerships meet the goals of all partners. Our partnership, which included two strong community-based organizations, produced a team that helped all partners gain organizational capacity. Environmental sampling in homes and reporting the results of that effort had community education and constituency-building benefits. Scientific results contributed to a court decision that required cumulative impact assessment for an oil refinery and to new policies for chemicals used in consumer products. All partners leveraged additional funding to extend their work.An appropriate evaluation strategy can demonstrate how CBPR projects can advance science, support community empowerment, increase environmental health literacy, and generate individual and policy action to protect health.
Project description:Environmental health literacy (EHL) has recently been defined as the continuum of environmental health knowledge and awareness, skills and self-efficacy, and community action. In this study, an interdisciplinary team of university scientists, partnering with local organizations, developed and facilitated EHL trainings with special focus on rainwater harvesting and water contamination, in four communities with known environmental health stressors in Arizona, USA. These participatory trainings incorporated participants' prior environmental health risk knowledge and personal experiences to co-create training content. Mixed methods evaluation was conducted via pre-post participant surveys in all four trainings (<i>n</i> = 53). Participants who did not demonstrate baseline environmental science knowledge pre-training demonstrated significant knowledge increase post-training, and participants who demonstrated low self-efficacy (SE) pre-training demonstrated a significant increase in SE post-training. Participants overall demonstrated a significant increase in specific environmental health skills described post-training. The interdisciplinary facilitator-scientist team also reported multiple benefits, including learning local knowledge that informed further research, and building trust relationships with community members for future collaboration. We propose contextual EHL education as a valuable strategy for increasing EHL in environmental health risk communities, and for building academia-community partnerships for environmental health research and action.
Project description:BACKGROUND:Community participation is a major principle of people centered health systems, with considerable research highlighting its intrinsic value and strategic importance. Existing reviews largely focus on the effectiveness of community participation with less attention to how community participation is supported in health systems intervention research. OBJECTIVE:To explore the extent, nature and quality of community participation in health systems intervention research in low- and middle-income countries. METHODOLOGY:We searched for peer-reviewed, English language literature published between January 2000 and May 2012 through four electronic databases. Search terms combined the concepts of community, capability/participation, health systems research and low- and middle-income countries. The initial search yielded 3,092 articles, of which 260 articles with more than nominal community participation were identified and included. We further excluded 104 articles due to lower levels of community participation across the research cycle and poor description of the process of community participation. Out of the remaining 160 articles with rich community participation, we further examined 64 articles focused on service delivery and governance within health systems research. RESULTS:Most articles were led by authors in high income countries and many did not consistently list critical aspects of study quality. Articles were most likely to describe community participation in health promotion interventions (78%, 202/260), even though they were less participatory than other health systems areas. Community involvement in governance and supply chain management was less common (12%, 30/260 and 9%, 24/260 respectively), but more participatory. Articles cut across all health conditions and varied by scale and duration, with those that were implemented at national scale or over more than five years being mainstreamed by government. Most articles detailed improvements in service availability, accessibility and acceptability, with fewer efforts focused on quality, and few designs able to measure impact on health outcomes. With regards to participation, most articles supported community's in implementing interventions (95%, n = 247/260), in contrast to involving communities in identifying and defining problems (18%, n = 46/260). Many articles did not discuss who in communities participated, with just over a half of the articles disaggregating any information by sex. Articles were largely under theorized, and only five mentioned power or control. Majority of the articles (57/64) described community participation processes as being collaborative with fewer describing either community mobilization or community empowerment. Intrinsic individual motivations, community-level trust, strong external linkages, and supportive institutional processes facilitated community participation, while lack of training, interest and information, along with weak financial sustainability were challenges. Supportive contextual factors included decentralization reforms and engagement with social movements. CONCLUSION:Despite positive examples, community participation in health systems interventions was variable, with few being truly community directed. Future research should more thoroughly engage with community participation theory, recognize the power relations inherent in community participation, and be more realistic as to how much communities can participate and cognizant of who decides that.
Project description:In the context of the 2016 Peace Agreement signed between the Colombian government and the FARC-EP (Fuerzas Armadas Revolucionarias de Colombia-Ejército del Pueblo), several challenges for society and academia have emerged: (1) overcoming the gap between the rural and urban settings, which has been one of the roots of the Colombian armed conflict, and (2) training psychologists and transforming traditional educational practices, which have not been designed to fulfill community needs in a post-conflict setting. One of the strategies from academia to overcome these difficulties is to create alliances with rural communities where students learn key competences to foster a horizontal approach while actively working with the community. In the region of Caquetá, Colombia, two Territorial Spaces for Training and Reincorporation (ETCR) were created in order to provide a space for former guerrilla members' reintegration to civil society. In the ETCR Héctor Ramírez, 27 students and two faculty participated in a service-learning project (2 weeks in December 2018 and two in June 2019) where they engaged in local daily practices and social projects based on the community's prioritized needs. The aim of this study was to analyze the learning process of undergraduate psychology students in this community psychology service-learning project in the context of peacebuilding in Colombia. This study is grounded in a Participatory Action Research (PAR) approach and data collected include reflective narratives and video diaries by students before and during the course, and two focus groups after the experience. Findings suggest that students who participated in the experience are in the process of developing cultural humility, through affective understandings and the consolidation of communities of practice that include the former guerrilla members and their knowledges. Preparing psychologists to lead peacebuilding and reconciliation processes is of importance to the field because the professional competencies gained in this context surpass the professional practice as they become part of the students' abilities as citizens. The social impact is twofold: the students learn to create partnerships where purposes are co-constructed and trust-based, while the community takes the lead of their processes creating alliances with an academia that recognizes their knowledge and practices.
Project description:We conducted a 2-phase systematic review of the literature to examine the nature and outcomes of health research using a community-based participatory research (CBPR) approach with AI communities to assess both the value and the impact of CBPR, identify gaps in knowledge, and guide recommendations for AI research agendas. Using PRISMA guidelines, we searched the peer-reviewed literature published from 1995 to 2016 and identified and reviewed 42 unique intervention studies. We identified and catalogued key study characteristics, and using the Reliability-Tested Guidelines for Assessing Participatory Research Projects, we quantified adherence to participatory research principles across its four domains. Finally, we examined any association between community participation score and health outcomes. The majority of studies (76.7%) used an observational study design with diabetes, cancer, substance abuse, and tobacco being the most common topics. Half of the articles reported an increase in knowledge as the primary outcome. Our findings suggest that a CBPR orientation yields improved community outcomes. However, we could not conclude that community participation was directly associated with an improvement in health outcomes.
Project description:The Community Research Fellows Training (CRFT) Program promotes the role of underserved populations in research by enhancing the capacity for community-based participatory research (CBPR). CRFT consists of 12 didactic training sessions and 3 experiential workshops intended to train community members in research methods and evidence-based public health. The training (a) promotes partnerships between community members and academic researchers, (b) enhances community knowledge of public health research, and (c) trains community members to become critical consumers of research. Fifty community members participated in training sessions taught by multidisciplinary faculty. Forty-five (90%) participants completed the program. Findings demonstrate that the training increased awareness of health disparities, research knowledge, and the capacity to use CBPR as a tool to address disparities.
Project description:Faith and public health partnerships offer promise to addressing health disparities, but examples that incorporate African-Americans and Latino congregations are lacking. Here we present results from developing a multi-ethnic, multi-denominational faith and public health partnership to address health disparities through community-based participatory research (CBPR), focusing on several key issues: (1) the multi-layered governance structure and activities to establish the partnership and identify initial health priority (obesity), (2) characteristics of the congregations recruited to partnership (n?=?66), and (3) the lessons learned from participating congregations' past work on obesity that informed the development of a multi-level, multi-component, church-based intervention. Having diverse staff with deep ties in the faith community, both among researchers and the primary community partner agency, was key to recruiting African-American and Latino churches. Involvement by local health department and community health clinic personnel provided technical expertise and support regarding health data and clinical resources. Selecting a health issue-obesity-that affected all subgroups (e.g., African-Americans and Latinos, women and men, children and adults) garnered high enthusiasm among partners, as did including some innovative aspects such as a text/e-mail messaging component and a community mapping exercise to identify issues for advocacy. Funding that allowed for an extensive community engagement and planning process was key to successfully implementing a CBPR approach. Building partnerships through which multiple CBPR initiatives can be done offers efficiencies and sustainability in terms of programmatic activities, though long-term infrastructure grants, institutional support, and non-research funding from local foundations and health systems are likely needed.