Community Engagement Strategies Research Articles

Leveraging African American family connectors for Alzheimer's disease genomic studies.

The underrepresentation of African Americans (AAs) in Alzheimer's disease (AD) research may limit potential benefits from translational applications. This article describes an approach to recruit AA families into an AD genomic study and characteristics of seeds (family connectors) used to overcome recruitment barriers of AA families into AD research. A four-step outreach and snowball sampling approach relying on family connectors was used to recruit AA families. Descriptive statistics of a profile survey were gathered to understand the demographic and health characteristics of family connectors. Twenty-five AA families (117 participants) were enrolled in the study via family connectors. Most family connectors self-identified as female (88%), were 60 years of age or older (76%), and attained post-secondary education (77%). Community-engaged strategies were essential to recruit AA families. Relationships between study coordinators and family connectors build trust early in the research process among AA families. Community events were most effective for recruiting African American families. Family connectors were primarily female, in good health, and highly educated. Systematic efforts by researchers are necessary to "sell" a study to participants.

Creating the Current and Riding the Wave: Persistence and Change in Community-Engaged Health Sciences Research

Recent decades have seen considerable increases in funding and support for community-engaged research (CER) in the health sciences, including the introduction of community engagement requirements into federally funded research infrastructure programs. This paper asks why, despite these supports and incentives, even the best-intentioned researchers and research organizations may struggle to design, implement, and sustain successful community engagement strategies. This question is examined using an exploratory case study of an environmental health sciences research center whose strategies were influenced in part by a requirement by the funder to incorporate community engagement into its research activities. This study utilizes multiple sources of qualitative data collected between the research center’s second and fifth years of operation, including participant observation, interviews, and focus groups. The analysis employs an organizational perspective, yielding insights into the factors hindering and facilitating the development of practices that integrate community perspectives and control into academic structures. The findings point to an ongoing dialectic between support for innovative community engagement practices and persistence of conventional academic structures. We highlight the interconnected effects of environmental influences, organizational structures, and individual agency on the development of innovative community engagement practices. The implications for future research and practice are discussed.

Community engagement processes in low- and middle-income countries health research settings: a systematic review of the literature

BackgroundCommunity Engagement is an important ethical imperative in research. Although substantial research emphasizes its real value and strategic importance, much of the available literature focuses primarily on the success of community participation, with little emphasis given to specific community engagement processes, mechanisms and strategies in relation to intended outcomes in research environments. The systematic literature review’s objective was to explore the nature of community engagement processes, strategies and approaches in health research settings in low- and middle-income countries.MethodsThe systematic literature review design was informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched for peer-reviewed, English-language literature published between January 2011 and December 2021 through three databases on the internet (PubMed, Web of Science and Google Scholar). The terms "community engagement," "community involvement," "participation," "research settings," and "low- and middle-income countries" were merged in the search.ResultsThe majority of publications [8/10] were led by authors from low- and middle-income countries, with many of them, [9/10] failing to continuously include important aspects of study quality. Even though consultation and information sessions were less participatory, articles were most likely to describe community engagement in these types of events. The articles covered a wide range of health issues, but the majority were concerned with infectious diseases such as malaria, human immunodeficiency virus, and tuberculosis, followed by studies on the environment and broader health factors. Articles were largely under-theorized.ConclusionsDespite the lack of theoretical underpinnings for various community engagement processes, strategies and approaches, community engagement in research settings was variable. Future studies should go deeper into community engagement theory, acknowledge the power dynamics underpin community engagement, and be more practical about the extent to which communities may participate.

The boundary problem: Defining and delineating the community in field trials with gene drive organisms.

Despite widespread and worldwide efforts to eradicate vector-borne diseases such as malaria, these diseases continue to have an enormous negative impact on public health. For this reason, scientists are working on novel control strategies, such as gene drive technologies (GDTs). As GDT research advances, researchers are contemplating the potential next step of conducting field trials. An important point of discussion regarding these field trials relates to who should be informed, consulted, and involved in decision-making about their design and launch. It is generally argued that community members have a particularly strong claim to be engaged, and yet, disagreement and lack of clarity exist about how this "community" should be defined and delineated. In this paper, we shed light on this "boundary problem": the problem of determining how boundaries of inclusion and exclusion in (GDT) community engagement should be drawn. As our analysis demonstrates, the process of defining and delineating a community is itself normative. First, we explicate why it is important to define and delineate the community. Second, we demonstrate that different definitions of community are used and intermingled in the debate on GDTs, and argue in favor of distinguishing geographical, affected, cultural, and political communities. Finally, we propose initial guidance for deciding who should (not) be engaged in decision-making about GDT field trials, by arguing that the definition and delineation of the community should depend on the rationale for engagement and that the characteristics of the community itself can guide the effective design of community engagement strategies.

Linking Public Health Monitoring to Dialogue-based Decision-making During the COVID-19 Pandemic: Experiences from a Participatory Pilot in the Netherlands

Introduction:In the Netherlands, a nationally coordinated research program has been initiated to monitor the immediate and long-term public health impact of the COVID-19 pandemic. This contribution describes the design and early results of a continuous dialectic process to involve national and local public health authorities and professionals in monitor-driven decision-making to anticipate the health impact of viral infections and mitigation measures.Method:An ongoing series of dialogue sessions was organized upon the release of quarterly and annual results of the monitoring program. Apart from supporting public health decision-making, the stepwise dialectic process aimed to ensure multi-sectoral learning and co-creation and nurture a sense of ownership among stakeholders from policy, practice and science. National and regional public health authorities served as hub coordinators and participated in determining and approaching relevant stakeholders. Whenever considered relevant, new stakeholders were invited to participate.Results:In the first year, three dialogue sessions were organized, with an emphasis on youth and young adults. Representatives from ministries, municipalities, health organizations, experiential experts and knowledge institutes attended the sessions. Based on the exchange, policy recommendations were formulated and shared among participants. The themes prioritized included mental health issues, overburdened healthcare services, involvement of vulnerable groups in policy development and understanding the complex myriad of risk factors. Moreover, several factors were identified that might facilitate or hinder the implementation and uptake of monitoring findings.Conclusion:The dissemination and discussion of monitoring data proved to be of added value in developing evidence-informed solutions and areas of attention for future monitoring, including the need to track progress of local and national implementation of recommendations. More broadly, the methodology piloted during the program requires further testing as a community engagement strategy and might be meaningful in other crises or problem contexts as well.

Equitable Urban Planning: Harnessing the Power of Comprehensive Plans.

Describe the role of comprehensive plans in promoting health equity in urban communities. Specifically, the review aims to identify recent findings related to using comprehensive plans to shape social determinants of health and to discuss the challenges that comprehensive plans face in promoting health equity. The review also presents recommendations for how urban planners, public health practitioners, and policymakers can work together to promote health equity through comprehensive planning efforts. The evidence highlights the importance of comprehensive plans in promoting health equity in communities. These plans can shape the social determinants of health, such as housing, transportation, and green space, which significantly impact health outcomes. However, comprehensive plans face challenges related to the lack of data and understanding of the social determinants of health and the need for collaboration between multiple sectors and community groups. To effectively promote health equity through comprehensive plans, a standardized framework that incorporates health equity considerations is needed. This framework should include common goals and objectives, guidance on assessing potential impacts, performance metrics, and community engagement strategies. Urban planners and local authorities play a critical role in developing clear guidelines for integrating health equity considerations into planning efforts. Harmonizing comprehensive plan requirements across the USA are also essential to ensure equitable access to opportunities for health and well-being.

Participatory action research to co-design a culturally appropriate COVID-19 risk communication and community engagement strategy in rural Pakistan.

Community engagement has shown to be fundamental component of the response to previous disease outbreaks. This study aimed co-design and implement a culturally appropriate COVID-19 risk communication and community engagement strategy with a resource-poor rural community in Northwest Pakistan. Participatory Action Research (PAR) was conducted from January 2021 to March 2022. Five PAR meetings took place with community members (n = 30) to: (1) explore how the COVID-19 pandemic impacted on the community; (2) identify challenges to limit the spread of the virus; (3) identify and implement solutions to these challenges; and (4) highlight the enablers, challenges and knowledge of the cultural context needed to optimize safety during emergencies. Focus group discussions (N = 6) with community members not involved in the PAR meetings (N = 50) and children of the community (N = 26) were conducted following the PAR meetings. Thematic analysis of the PAR and focus group data was conducted. Delivery of messages on how to keep families safe, provision of personal protective equipment and improved water systems were part of the strategies taken by the community to create awareness and reduce the spread of COVID-19. Nine themes were identified: Attitudes to the pandemic: From skepticism to acceptance, Changing attitudes about vaccination: rumors and trust, COVID-19 and Faith, Social impact of the pandemic, Access to water, Resource mobilization: personal protective equipment, Spaces where collaborative effort can bring to solutions, Agents of change, and Empowerment of women. The participatory approach of this research allowed understanding of the challenges faced by the community to engage in behavior change strategies to reduce the spread of COVID-19 and enabled the community to find sustainable solutions. Engagement with the community empowered men and women to be agents of change and promoted necessary precautionary actions to reduce the risk of infection within their community. Participatory approach highlighted the importance of engaging with and integrating to local culture and values to overcome challenges such as gender imbalance and distrust. Findings of this study are relevant to others working in diverse cultural settings in similar crises events regardless of particular cultural variations.

Stakeholder perceptions on scaling-up community-led interventions for prevention and control of non-communicable diseases in Bangladesh: a qualitative study

BackgroundEngaging communities is an important component of multisectoral action to address the growing burden of non-communicable diseases (NCDs) in low- and middle-income countries. We conducted research with non-communicable disease stakeholders in Bangladesh to understand how a community-led intervention which was shown to reduce the incidence of type 2 diabetes in rural Bangladesh could be scaled-up.MethodsWe purposively sampled any actor who could have an interest in the intervention, or that could affect or be affected by the intervention. We interviewed central level stakeholders from donor agencies, national health policy levels, public, non-governmental, and research sectors to identify scale-up mechanisms. We interviewed community health workers, policy makers, and non-governmental stakeholders, to explore the feasibility and acceptability of implementing the suggested mechanisms. We discussed scale-up options in focus groups with community members who had attended a community-led intervention. We iteratively developed our data collection tools based on our analysis and re-interviewed some participants. We analysed the data deductively using a stakeholder analysis framework, and inductively from codes identified in the data.ResultsDespite interest in addressing NCDs, there was a lack of a clear community engagement strategy at the government level, and most interventions have been implemented by non-governmental organisations. Many felt the Ministry of Health and Family Welfare should lead on community engagement, and NCD screening and referral has been added to the responsibilities of community health workers and health volunteers. Yet there remains a focus on reproductive health and NCD diagnosis and referral instead of prevention at the community level. There is potential to engage health volunteers in community-led interventions, but their present focus on engaging women for reproductive health does not fit with community needs for NCD prevention.ConclusionsResearch highlighted the need for a preventative community engagement strategy to address NCDs, and the potential to utilise existing cadres to scale-up community-led interventions. It will be important to work with key stakeholders to address gender issues and ensure flexibility and responsiveness to community concerns. We indicate areas for further implementation research to develop scaled-up models of community-led interventions to address NCDs.

“We flew under the radar:” examining the influence of stigma on community engagement strategies among harm reduction practitioners in Central Appalachia

BackgroundThe rise in opioid overdoses has disproportionately affected the Central Appalachian region of the United States. Stigma towards people who use drugs (PWUD) has limited access to life-saving harm reduction services in the region. Previous research has emphasized the need to engage communities to reduce stigma, yet these efforts can lead to backlash. The purpose of this study was to explore how stigma affects harm reduction practitioners’ approaches to community engagement. MethodsWe analyzed qualitative interviews with harm reduction practitioners (n ​= ​35) in Central Appalachia. We used deductive and inductive coding, as well as narrative summaries, to identify harm reduction practitioners’ descriptions of stigma and their resulting approaches to community engagement. We identified three in vivo codes that encapsulated the main community engagement strategies, “flying under the radar,” “spreading the word,” and “damage control,” and assessed how each strategy influenced program operations. ResultsMost participants (n ​= ​18) “spread the word,” or conducted community engagement activities to combat social stigma about harm reduction services. While many were able to gain approval in the community, some experienced pushback from certain stakeholders. Eleven participants “flew under the radar,” or decided not to engage stakeholders about their program, after perceiving that social and enacted stigma were too great to overcome. While they did not experience backlash, they could not access some funding sources or partner with state-sanctioned organizations. Finally, a few participants (n ​= ​6) did not proactively choose an engagement approach and instead had to conduct “damage control” to assuage community concerns about their services. ConclusionTo determine the most appropriate engagement strategy, harm reduction practitioners may benefit from evaluating the levels of stigma within their community. Federal, state, and local funding and policy interventions are needed to augment stigma reduction efforts within Central Appalachia.

Abstract PL03-05: Early Engagement Equals Early Detection

Abstract PL03-05: Early Engagement Equals Early Detection

The (mis)uses of community: a critical analysis of public health communication for COVID-19 vaccination in the United States

Abstract Community engagement is heralded as a panacea for the inherent political challenges of public health governance. For COVID-19 vaccination planning in the United States, appeals for community engagement emerged in response to the disproportionate mortality and morbidity burdens on marginalized groups and as a bulwark against a political climate of vaccine hesitancy, scientific disinformation, and mistrust of public health. In this article, we use a culture-centered analytical framework to critique the discursive construct of “community” within public health documents that discuss community engagement strategies for COVID-19 vaccination. Through a critical-abductive analysis of more than 400 state public health department documents, we recognized the diverse axes on which appeals to the community are framed. Our findings show that the construct of “community” refers to both a material/tangible space marked by discursive struggle and one containing a moral economy of responsibility. We discuss the challenges and opportunities of conceptualizing community in these ways.

Exploring the associations between the perception of water scarcity and support for alternative potable water sources.

This study examines the association between the perception of water scarcity and support for alternative water sources in general, and specifically desalination and recycled water. It also examines the mediating role that perception of climate change has on the aforementioned association. A 46-item survey (n = 588) was conducted in the Geelong region of Australia. Logistic regression was used to determine the independent association between perceived water scarcity and socio-demographic factors, with support for alternative water sources, desalination and recycled water. 82% of respondents supported undefined 'alternative water sources'. However, support for specific alternatives was lower (desalination: 65%; recycled water: 40.3%). Perception of water scarcity was significantly associated with increased odds of support for alternative water sources (OR 1.94, 95% CI: 1.25-3.00) and support for recycled water (OR 2.32, 95% CI: 1.68-3.31). There was no significant relationship between perception of water scarcity and support for desalination (OR 0.959 95% CI: 0.677-1.358). Climate change was found to mediate perceived water scarcity and support for alternative sources (OR 1.360, 95% CI: 0.841-2.198). The mediation of the relationship between perceived water scarcity and support for recycled water by climate change was not strong. These results facilitate enhanced community engagement strategies.

Community engagement in maternal and perinatal death surveillance and response (MPDSR): Realist review protocol.

Background: While there has been a decline in maternal and perinatal mortality, deaths remain high in sub-Saharan Africa and Asia. With the sustainable development goals (SDGs) targets to reduce maternal and perinatal mortality, more needs to be done to accelerate progress and improve survival. Maternal and perinatal death surveillance and response (MPDSR) is a strategy to identify the clinical and social circumstances that contribute to maternal and perinatal deaths. Through MPDSR, an active surveillance and response cycle is established by bringing together different stakeholders to review and address these social and clinical factors. Community engagement in MPDSR provides a strong basis for collective action to address social factors and quality of care issues that contribute to maternal and perinatal deaths. Studies have shown that community members can support identification and reporting of maternal and/or perinatal deaths. Skilled care at birth has been increasing globally, but there are still gaps in quality of care. Through MPDSR, community members can collaborate with health workers to improve quality of care. But we do not know how community engagement in MPDSR works in practice; for whom it works and what aspects work (or do not work) and why. This realist review answers the question: which strategies of community engagement in MPDSR produce which outcomes in which contexts? Methods : For this realist review, we will identify published and grey literature by searching relevant databases for articles. We will include papers published from 2004 in all languages and from all countries. We have set up an advisory group drawn from academia, international organizations, and practitioners of both MPDSR and community engagement to guide the process. Conclusion: This protocol and the subsequent realist review will use theoretical approaches from the community engagement literature to generate theory on community engagement in MPDSR. Prospero registration number: CRD42022345216.

Community Mobilization and Community Incentivization (CoMIC) Strategy for Child Health in a Rural Setting of Pakistan: Study Protocol for a Randomized Controlled Trial.

Despite the decline in under-five mortality by over 60% in the last three decades, majority of child mortality is still attributable to communicable and infectious diseases that are not only preventable, but they are also treatable. We evaluated the potential impact of a participatory community engagement and innovative community incentivization (C3I) strategy for improving the coverage of child health interventions in a rural setting in Pakistan. We first undertook formative research to assess community knowledge and the likelihood of collective community strategy and conditional incentives for improving existing preventive and care-seeking practices for childhood diarrhea and pneumonia. We developed options for community incentivization and improving group practices, taking local norms and customs into account in the design of the community mobilization strategies and messages. These interventions were then formally evaluated prospectively in a three-arm cluster randomized controlled trial. Clusters were randomly assigned by a computer algorithm using restricted randomization by an external statistician (1:1:1) into three groups: community mobilization and incentivization (CMI); community mobilization only using an enhanced communication package (CM); and control group. The C3I was an innovative strategy as it involved serial incremental targets of collective improvement in community behavior related to improvement in the coverage of a composite indicator of fully immunized children (FIC), oral rehydration salt (ORS), and the sanitation index (SI). The evaluation was done by an independent data collection and analysis team at baseline and end line (after 24 months).

'If I am on ART, my new-born baby should be put on treatment immediately': Exploring the acceptability, and appropriateness of Cepheid Xpert HIV-1 Qual assay for early infant diagnosis of HIV in Malawi.

Early infant diagnosis of HIV (EID-HIV) is key to reducing paediatric HIV mortality. Traditional approaches for diagnosing HIV in exposed infants are usually unable to optimally contribute to EID. Point-of-care testing such as Cepheid Xpert HIV-1 Qual assay-1 (XPertHIV) are available and could improve EID-HIV in resource constrained and high HIV burden contexts. We investigated the acceptability and perceived appropriateness of XpertHIV for EID-HIV in Mulanje Hospital, Malawi. Qualitative cross-sectional study using semi-structured interviews (SSI) among caregivers and health care workers at Mulanje District Hospital. The qualitative study was nested within a larger diagnostic study that evaluated the performance of XpertHIV using whole-blood-sample in a resource limited and high burden setting. A total of 65 SSIs were conducted among caregivers (n = 60) and health care providers (n = 5). Data were coded using deductive and inductive approaches while thematic approach was used to analyse data. Point-of-care XPertHIV was perceived to be acceptable among caregivers and health care providers. Caregivers' motivations for accepting XPertHIV HIV-testing for their infants included perceived risk of HIV emanating from child's exposure and validation of caregiver's own HIV sero-status. Although concerns about pain of testing and blood sample volumes taken from an infant remained amplified, overall, both caregivers and health care providers felt XpertHIV was appropriate because of its quick result turn-around-time which decreased anxiety and stress, the prospect of early treatment initiation and reduction in hospital visits and related costs. Implementation of XpertHIV has a great potential to improve EID-HIV in Malawi because of its quick turn-around-time and associated benefits including overcoming access-related barriers. Scaled implementation of this diagnostic technology require a robust community engagement strategy for managing caregivers and community myths and misconceptions towards the amount of blood sample collected from infants.

Fostering social justice leaders through the social action, leadership and transformation (SALT) model

Fostering social justice leaders through the social action, leadership and transformation (SALT) model

The perceived experience of students becoming positive change agents: A case of the Honors Living-Learning community program at Rutgers University - Newark

Studies have found that in higher education institutions in the United States of America, a variety of resources, student engagement, institutional practices, and other stakeholders contribute to students’ perceptions of becoming positive change agents. This project explores how the Honors Living-Learning Community (HLLC) program at Rutgers University-Newark (RUN), New Jersey capitalizes on resources, leadership, curriculum, and other strategies to promote students' perception to become positive change agents. Secondary research from a survey completed by the HLLC graduates was utilized for this project. As a descriptive study, survey responses were coded and evaluated to determine the HLLC’s impact on students’ perception on becoming positive change agents. The study found that the HLLC program at RUN successfully promotes students' perception to become positive change agents. The HLLC program achieves this through its curricular structure, which integrates academic rigor with community engagement, and a strong emphasis on leadership development. The HLLC’s success in developing positive change agents has practical implications for institutions of higher education. Other universities could consider replicating the HLLC 's unique curricular structure and community engagement strategies to promote leadership development and cultivate positive change agents among their graduates.

Community Dynamics and Engagement Strategies in Establishing Demographic Development and Environmental Surveillance Systems: A Multi-Site Report from India.

Six diverse Demographic Development and Environmental Surveillance System (DDESS) sites were established in urban slum, urban resettlement, peri-urban, rural, and tribal areas located in Northern, North-East, Eastern, and Southern regions of India from June 2020 to March 2022. Understanding the community dynamics and engaging people in the community is critically important in the process of establishing DDESS. We ascertained the barriers, challenges, and facilitators during the establishment of multiple DDESS sites across India. This was a cross-sectional descriptive mixed-methods study. Multiple barriers and challenges encountered were reported in the process of community engagement (CE), such as geographical inaccessibility, language barriers, adverse weather, non-responsiveness due to perceived lack of individual benefit or financial gain, fear of contracting COVID-19, COVID-19 vaccine hesitancy, etc. Facilitators in the CE process were pre-existing links with the community, constitution of community advisory boards, community need assessment, concomitant delivery of outreach health services, and skill-building facilities. Most community barriers in the development of DDESS sites in resource-limited settings can be overcome through a multipronged approach, including effective community engagement by focusing on demonstrating trust at the local level, enlisting community mobilization and support, utilizing pre-existing community linkages, initiating community diagnosis, and meeting perceived community health needs.

The development and implementation of a community engagement strategy to improve maternal health in southern Mozambique.

Delays to seek medical help can contribute to maternal deaths particularly in community settings at home or on the road to a health facility. Community engagement (CE) can improve care-seeking behaviours and complements community-based interventions strengthening maternal health. The purpose of this paper is to describe the process undertaken to develop and implement a large-scale community engagement strategy in rural southern Mozambique. The CE strategy was developed within the context of the "Community-Level Interventions for Pre-eclampsia" (NCT01911494) conducted between 2015-2017 in southern Mozambique. Key CE messages included pregnancy complications and their warning signs, including pre-eclampsia and eclampsia, as well as emergency readiness, birth preparedness, decision-making mechanisms, transport options and information about the trial. CE meeting logs were used to record quantitative and qualitative information on demographic data and feedback. Quantitative data was analyzed using RStudio (RStudio Inc, Boston, United States) and community feedback was qualitatively analyzed on NVivo12 (QSR International, Melbourne, Australia). CE activities reached 19,169 participants during 4,239 meetings. CE activities were reported to be well received by community members though there was a relatively lower participation of men (3565 /18.6%). The use of recognized local leaders and personnel, such as community leaders, nurses and community health workers, allowed for greater acceptance of CE activities and maximized coverage of health messages in the community setting. Our CE strategy was effective in integrating maternal health promoting activities in routine care of community health workers and nurses in the area. Understanding district differences, engaging husbands, partners, mothers-in-law and community-level decision-makers to build local support for maternal health and flexibility to tailor messages to local needs were important in developing sustainable forms of CE. Better strategies are needed to effectively engage men in maternal health promotion who were less available due to working outside of the home or neighbourhoods.

An Engaged Community of Faith to Decrease HIV Stigma in the U.S. South.

Community members from a city in the U.S. Deep South identified root causes of HIV racial disparities, including stigma. This meeting report describes how we developed and implemented a conference series to address HIV stigma. We used community feedback and bidirectional learning to host two meetings in observance of National HIV Testing Day (June 2021) and National Southern HIV/AIDS Awareness Day (August 2021). We established a 10-member organizing committee workgroup that met monthly to plan the Faith Summit in honor of National Black HIV Awareness Day (February 2022). Lessons learned include (a) the effectiveness of different community engagement strategies, including participatory evaluative approaches, and (b) strategies to maintain engagement and increase participation, such as reliance on personal and professional networks and prompting the community about forthcoming interventions. Sustaining a conference series to end HIV stigma requires commitment and inclusive participation. This collaborative project offers additional evidence that faith communities can be a part of the solution to ending the HIV epidemic and related health disparities.