Chapter 1

Community-Engaged Research to Improve Health and Well-Being for Young Children

Farrah Jacquez

University of Cincinnati

Lina Svedin

University of Utah

Interdisciplinary Community-Engaged Research for Health is a series that aims to bridge the gaps between science and practice and between different disciplines to facilitate collaborative research toward improved health and health equity. In each volume, authors will describe the specific tools they have used (both successfully and unsuccessfully) to work together and the impact of those efforts on health outcomes. Taken together, the Interdisciplinary Community-Engaged Research for Health series will provide a road map for inclusive interdisciplinary collaborations toward specific goals. Volume 1 describes research collaborations focused broadly

on improved outcomes but more specifically on increased equity in early childhood health.

The authors included in this volume are researchers and community members who were part of the first cohort of the Robert Wood Johnson Foundation’s Interdisciplinary Research Leaders (IRL) program. The IRL program funds three-person teams, composed of two researchers and one community member, using the power of applied research to engage the community to define and explore a question, and then applies findings in real time to create measurable changes. The following chapters describe the process IRL teams used to work together to improve the health of young children.

To increase the potential for research to lead to real-world action and

systems-level change, the IRL program requires collaboration between academic and community partners. Similarly this volume has purposely been designed to reach a wide audience of academics, community leaders, practitioners, and students who are interested in collaborating to do applied research. Although the editors of this volume are both researchers, each chapter describes collaborations between diverse teams of researchers and community members working for early childhood health promotion across the United States. As researchers, we have chosen this path because we care deeply about the health and well-being of the communities we work with and the outcomes at stake. We have met people from all over the country who share these passions and have stories to tell from their own journeys. Whether you are a community organizer or an agency leader, a student or faculty member, a researcher or a policy analyst, an elected official or a system-change agent, this book is for you. To help you follow the threads that weave the subsequent chapters together, this introductory chapter presents the rationale for this volume and some of the main ideas and concepts that support the research presented in the subsequent chapters. We aim to inspire and encourage excellence in research that respects the inherent knowledge and wisdom of communities and is conducted with community benefit as the ultimate goal. We share our teams’ research processes and experiences of conducting community-engaged research in hopes that you will someday, in the not too distant future, feel empowered and equipped to do the same.

Setting Our Sights to Change the Course

We are not alone in our passion for community-engaged health research. Persistent health inequities resulting from structural inequality have motivated many researchers and research-funding institutions to seek new ways to move the needle toward social equity across a number of sectors. Traditionally, health promotion and intervention efforts tend to be institution-based, “expert”-driven, and silo-specific. To achieve health equity, diverse stakeholders with different types of knowledge and expertise need to work together to solve real-world problems. Scientists and faculty members from different disciplines and research orientations

need to integrate their skills for translational outcomes. Researchers need to work collaboratively with community partners, not just “grasstops,” such as directors of agencies and presidents of organizations, but also community members who are feeling the real-world effects of health inequities. Without the expertise of those who are experiencing structural inequality, any efforts to overcome health inequities will have limited potential for change.

Collaborating across disciplines and through scientist/practitioner lines sounds ideal, but in reality the challenges can derail even the most well-intentioned efforts. The vocabulary used by community residents, nonprofit agencies, and researchers from different disciplines can all vary dramatically from one another. The goals and value systems held by different stakeholders can lead to entirely different perspectives on problems and their possible solutions. In order to work together toward health equity, there is a need not only to recognize the importance of collaboration but also to have the tools and vision to understand how to carry it out.

Scholars from various disciplines wanting to pursue community-engaged

research currently have few high-quality sources to turn to for methodological advice and best practices. Considerable and important work resulting from community-academic partnerships is currently being published, expanding our understanding of the potential impact of community-engaged research. The methodological coverage of the process of this work, however, is scant at best. Journal articles publishing results from studies claiming to be community-engaged research frequently make summary statements such as “we engaged the community all throughout this process.” Not only does this leave much to the imagination in terms of being able to verify how and to what extent “the community” was involved, it insinuates that community-engaged research looks just like traditional research but with extra people. We hope that by illuminating the process we will arm future researchers with the tools needed to plan, conduct, and advocate for this work. For example, most of the chapters in this volume emphasize the need to be flexible through significant changes in personnel, political landscape, and/or policies. Similarly, authors describe the amount of time it took to get through the process as being longer than anticipated. These perspectives can prepare future researchers to invest more time and energy into the maintenance of collaborative relationships and build flexibility in research plans.

By providing a structured discussion of the nuts-and-bolts processes needed to conduct funded, team-based, community-engaged research in the United States, this volume shares perspectives that increase our ability to refine and make community-engaged research more effective and transparent. While the chapters reflect on unique research questions and projects, each chapter describes what the community partnership looked like, how it was created, and how it influenced and shaped the research questions. Furthermore, we highlight the process of investigation, what worked well, and where the teams of researchers encountered successes and challenges. The chapters present research questions and objectives

that address a larger effort to promote the health of young children in the United States, and in doing so shed light on the scalable, replicable processes and methods of community-engaged research.

The authors represented in the volume were selected to do this community-engaged research on a competitive grant application basis and represent a unique team-based research approach. Research partners represent top teaching and research institutions in the United States, and community partners represent nonprofit organizations, state and local agencies, state and regional community organizations, and for-profit community service organizations. The breadth of experience and expertise that the volume communicates is unique and can serve as the foundation for a much-needed methodological development conversation as well as insight into excellence in research that truly utilizes the strengths of both researcher and practitioner in team-based science.

Community-Engaged Research: Definitions and Prevalence

As a scholar-practitioner community, we consider community-engaged research valuable and feasible, and, in terms of health, it may be our best chance at promoting and supporting lasting societal change. However, interdisciplinary community-engaged research (ICER) comes with many challenges. While some of these barriers and challenges have prevented scholars from engaging in ICER, we set out to showcase how teams of researchers and community members have worked to overcome them. We encourage others to conduct this type of research and to promote high-quality, strengths-based research that respects community culture.

Our definition of community-engaged research refers to collaborations between researchers and community members for the “mutually beneficial exchange of knowledge and resources in a context of partnership and reciprocity” (Driscoll 2008). The primary goals of community-engaged research are action, impact, and community benefit; a secondary goal is the dissemination of the research results to the academic community to contribute knowledge toward future research, interventions, and policy development. Although community-engaged research exists across almost all disciplines, the words used to describe it vary widely. Educators and social scientists are more likely to describe community-engaged work as action research or participatory action research. Within higher education, scholars often use the terms civic engagement or community-engaged scholarship. Health systems researchers tend to discuss consumer engagement. Public health and academic medicine most often use the term community-based participatory research (CBPR) to describe research conducted in partnership with community members to improve healthcare and health outcomes.

The common theme among all disciplines is matching the knowledge and methodology expertise of researchers with the local expertise and lived experiences of community members to collaborate for change. Scholars have described community-academic partnerships on a continuum ranging from cooperation to coordination to collaboration to partnership, with each step indicating more equity in decision-making (Winer and Ray 2000). Community and academic partners should decide together where on the continuum they want their work to be, based on their research question and their specific goals. Although any point on the continuum falls under the umbrella of community-engaged research, there is increasing recognition of the benefits of shared leadership between community and academic partners. The National Institutes of Health have described the amplified impact, flow, and communication that comes with enhancing collaboration on all steps of the research process (CTSA 2011). Specifically, they posit that shared leadership increases the potential for broader benefits in health outcomes, larger community impact, and stronger bidirectional trust built as a foundation for future collaboration.

Although community-engaged research is prevalent across disciplines  targeting diverse outcomes, work in the health arena, in particular, has grown exponentially in the last decade. Recent recommendations from international organizations emphasize the necessary role of community participation in improving population health and reaching health equity (WHO Regional Office 2012; WHO 2016). Research-funding mechanisms appear to be following their lead and requiring community-engaged research in grant proposals. The National Institutes of Health’s Clinical and Translational Science Award (CTSA) program supports a national network of medical research institutions that work together to improve the translational research process to get more treatments to more patients more quickly. In 2017 fifty-seven medical institutions across the United States collectively received half a billion dollars in CTSA funding. CTSA funding has historically required that institutions include a community-engagement component in their program’s activities, resulting in a major incentive for researchers to do community-engaged research and a major need for effective community collaborations. The Patient-Centered Outcomes Research Institute (PCORI) is a nonprofit, nongovernmental organization that was authorized by Congress in 2010 to “improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policymakers make better-informed health decisions” (PCORI 2018). Since 2017 PCORI has funded $1.6 billion in research aimed directly at responding to patients’ circumstances and preferences by meaningfully involving patients in the research process.

Increased funding has led to considerable growth in the amount of community-engaged research happening across the United States and internationally, which has led to an increased need for academic outlets disseminating this type of work. Over the past ten years several journals have been developed with the specific mission to disseminate community-engaged work. Perhaps most prominently, the Community-Campus Partnerships for Health has been publishing Progress in Community Health Partnerships, often described as the journal of CBPR, since 2007. Established in 2008, Clinical and Translational Science is a medical journal highlighting original research, bridging laboratory discoveries with the diagnosis and treatment of human disease. Two newer journals provide specific opportunities for authors to describe the process of working with communities in research: Gateways: International Journal of Community Research and Engagement and Collaborations: A Journal of Community-Based Research and Practice. The number of articles featuring community-engaged research has also increased exponentially within traditional, well-established journals. Several prominent journals that regularly feature community-engaged work are Social Science and Medicine, Health Promotion Practice, the Journal of Healthcare for the Poor and Underserved, the American Journal of Public Health, Ethnicity and Disease, the Journal of Cancer Education, and the Journal of Urban Health.

Why Community-Engaged Research?

The environmental scientists Carolina Balzacs and Rachel Morello-Frosch have described the ways that community-based participatory research (or research that includes shared leadership between community and academic partners) can improve the relevance, rigor, and reach of scientific research (Balzacs and Morello-Frosch 2013). First, shared decision-making between community members and scientists ensures that research is asking the right questions, thereby making research more relevant in the real world. Individuals who are experiencing poor health or are historically on the receiving end of health inequities can provide the perspective of relevance to lived experiences, while scientists can provide perspective of the relevance in relation to existing scientific research.

Second, collaborating with community members improves the rigor of scientific research by promoting the validity of study design, improving data collection, and ensuring that data interpretation is in line with real-world experience. Measurement validity will be higher when individuals who are similar to participants help choose tools. Participant recruitment can improve dramatically when community members are doing the asking, particularly in marginalized populations, where mistrust of scientists runs high. Understanding the meaning and implications of results always reflect the bias of the scientist conducting the research; including community members in the interpretation process ensures that

the interpretation is understood in the context of lived experiences.

Third, shared leadership ensures a wide reach of dissemination, increasing not only the contribution to the scientific literature but also the potential for change in regulatory and policy arenas. Taken together, the rigor-relevance-reach framework helps to conceptualize how community-engaged research can provide better research evidence to promote a culture of health and to move the needle toward eliminating health inequities.

In response to the recent boom in community-engaged research in health fields, scholars have attempted to provide definitive evidence that collaborating with community partners can improve health outcomes. Despite considerable interest and requests from a wide spectrum of health-related sectors, comprehensive meta-analyses of community-engaged research processes and outcomes have proven to be difficult. Most challenging—the disparate vocabulary researchers use to describe research along the community-engagement continuum

makes synthesizing the literature extremely challenging (Rifkin 2014; Sarrami-Foroushani et al. 2014). Several suggestions for conceptualizing community-engagement to improve comparability have emerged in the last decade, including subcategorizations of community participation (South et al. 2017), organization by key concepts of community participation (Sarrami-Foroushani et al. 2014), and the use of “community-academic partnerships” as the “single conceptual definition to unite multiple research disciplines and strengthen the field” (Drahota et al. 2016, 163). Community participation is better thought of as a process rather than a research method because any participation is going to be context-specific and therefore difficult to generalize across studies (Rifkin 2014).

Despite the challenges, several reviews of the literature have established associations between community-engaged research and improved health outcomes, particularly among marginalized populations. One systematic review and meta-analysis of 319 community-engaged public health research studies found that community-engaged interventions are effective in improving health behaviors, health outcomes, self-efficacy, and social support (O’Mara-Eves et al. 2013). The authors analyzed the data for systematic methodological biases and found that the benefits to health outcomes appear to be robust. Another systematic review of the role of community-engaged research in health promotion among disadvantaged populations found that 88 percent of reviewed interventions improved health outcomes and 60 percent reduced health inequities (Cyril et al. 2015). In their review of sixty-four studies of community participation in health systems research, George et al. (2015) found that most of the existing literature detailed improvements in service availability, accessibility, and acceptability when partnering with communities. In a study of two hundred CBPR projects, researchers found that not only community involvement in research but also the quality of community-academic partnerships were associated with immediate and distal health outcomes (Oetzel et al. 2018).

Community-Engaged Research and Improving Health in the United States

The research presented in this volume is built on the notion that research can and should inform policy change and that policy change in and of itself is important for improving health—but that it is not enough. Our community partners and years of conducting research that has not had enough impact, and on-the-ground benefit, have convinced us that research needs to be less top-down, better informed by listening to the people it studies, and responsive to how the community views and prioritizes those needs. We see the need to include and engage researchers and community members as equal partners, with a stake in the questions asked and the outcomes studied, in order to create significant change. By

conducting research that engages the communities we study in a meaningful way, we can help create and sustain community change to support health, and by engaging in this community-engaged research, we see a potential for deep and lasting societal change with regard to health.

In an effort to create and support cultures of health in US communities, the teams featured in this volume focus on early childhood and health. Developments and challenges in this area have the potential to impact the health of individuals in the short term and long term. The challenges that the research teams look into—early childhood and health—are felt across the United States. In this sense, the research conducted and presented in this volume has a bearing on conditions and communities far beyond the specific settings in which the research teams are working.

Many of the conditions individuals experience when they are young children continue to influence their health and well-being much later in their lives. For example, research evidence has demonstrated that children enrolled in high-quality preschools are more likely to attend college and have full-time employment as adults (Reynolds et al. 2007). Children who are obese before age five are more likely to be obese later in adolescence (Nader et al. 2006) and into adulthood (Simmons et al. 2016). Adverse Childhood Experiences (ACEs) experienced before age five are associated with negative mental health outcomes into adulthood (Herzog and Schmahl 2018). With the long-term goal of building a culture of health, the Robert Wood Johnson Foundation’s Interdisciplinary Research Leaders (IRL) program made early childhood health a target area for their first cohort of the program. In bringing together community members working to promote the health and well-being of young children and researchers well-versed in evaluation and knowledge creation, the IRL program sought to fuel research that would not only add foundational evidence for early childhood intervention efforts but also grow a cohort of leaders prepared to cut across professional silos and take on the inherent challenges of early childhood health head on. Although community-academic partnerships around early childhood are

not unheard of (e.g., Tribal Early Childhood Research Center; Whitesell et al. 2015; CBPR in Early HeadStart; McAllister et al. 2003), collaborations that bridge the gap between “ivory tower” early childhood education research and community institutions serving young children are not the norm. By working together on collaborative, community-informed research, the IRL teams aim to shift policies and systems that will affect child health. For example, authors describe projects focused on the birth experiences of women at high risk for negative birth outcomes, interventions focused on parenting infants and preschool education, and research that will change systems of Women, Infants, and Children (WIC) education delivery and child welfare/healthcare communication.

The Structure of the Volume

The chapters in this volume discuss how community-engaged research on very profound and challenging topics within early childhood health is currently being conducted throughout the United States. The scope of academics and community partners engaging in this work is incredibly diverse. Academic partners authoring chapters in this volume represent public health, psychology, policy, economics, medicine, nutrition, and geography researchers. Community partners include not only grassroots partners, such as community organizers and community residents, but also representatives from communities of policy and practice, such as medical practitioners, nonprofit leaders, and policymakers. The chapters illustrate how teams of community partners and researchers can, and have, bonded to overcome the challenges of doing community-engaged research well, because they care deeply about the promoting the health of young children in their communities and they feel that evidence-based research for change is key. The authors share why they are pursuing this research and how joining the effort to build a culture of health through interdisciplinary and community-engaged research has impacted them and their work.

Despite covering diverse geographic areas, research projects, and experiences, the chapters in this volume are structured in a similar way. They outline what the research team wanted to work on as they set out to conduct community-engaged research, how they went about doing it, the stumbling blocks and supports they found as they engaged in the research process, and the results of their efforts. The first team research chapter, “Enhancing the Arkansas Birthing Project through Technology,” orients our empirical focus to very early childhood interventions to promote health and the development of the Arkansas Birthing Project. The research team supported a volunteer peer-mentoring program for

women of color during pregnancy and the first year of each baby’s life. Ensuring social and community support for these women, as well as standardized education with the use of technology, were parts of the team’s joint effort. Chapter 3, “A Place-Based Approach to Early Childhood Wellness in Cincinnati: Communities Acting for Kids Empowerment (CAKE),” centers neighborhood organizing in Cincinnati, Ohio, following a resident-driven tax aimed at providing universal preschool. The team—consisting of a health geographer, a clinical psychologist, and a community organizer—used community organizing in the Carthage and Roselawn neighborhoods to build resident leadership and power. Using participatory research methods, the team organized community meetings to identify community priorities for early childhood wellness. Chapter 4, “Finding Our Way as a Cross-Systems Team: Lessons Learned from an Interdisciplinary Research Team,” outlines the work of an Indiana–based research team, consisting of a psychology professor, an education researcher, and a community organizer. Together they worked to promote social and emotional health and developmental well-being in early childhood. Specifically, they were interested in addressing the

health impacts of mass incarceration on children in the state. The team reflected on their experience of bringing together both academics and community-based institutions around the issue of access to high-quality pre-k education for children whose caregivers experienced incarceration.

Recognizing the importance of structural racism in unequal health outcomes, chapter 5, “Improving Racial Equity in Birth Outcomes: A Community-Based, Culturally Centered Approach,” features the work by two public health professors and the owner of a for-profit birthing center in Minneapolis. The authors described the core content, experiences, and outcomes of pregnancy and childbirth care provided to clients by a culturally competent, African American–owned birth center: Roots Community Birth Center. The team outlined how their work reveals a new model of care that allows for the healing of both personal and historical trauma. Chapter 6, “Creating Transformational Nonprofit/University Partnerships in Public Health: Lessons Derived from Collaboration between Room to Grow and Columbia University,” features the Columbia Study of Mothers and Babies, an exploratory randomized controlled trial of the Room to Grow program model. Room to Grow is a therapeutic, strengths-based program, where the provision of items is designed to improve personalized parenting goals aligned with the program’s three-year curriculum. Chapter 7, “Building Strong Partnerships with the Puerto Rico WIC Program for Promoting Healthy Lifestyles in Early Childhood and a Long-Lasting Culture of Health,” discusses the planned transformation of the Puerto Rico WIC program, aimed at promoting healthy lifestyles in early childhood and a long-lasting culture

of health for Puerto Rican families. The study of this federal program’s adaptation in Puerto Rico took a sharp turn in September 2017 when the island suffered catastrophic damage and loss of life after Hurricanes Irma and Maria. The team shifted their work to assess how WIC service continuity and needs assessments were secured in the wake of a major disaster on an island where most of the food is imported.

The final empirical chapter, “In Search of Child Welfare and Child Health Collaboration,” presents the team research of a child abuse pediatrician, a public policy professor, and the deputy director of Utah’s child welfare agency. The team looked into policies and practices that support collaboration between child welfare and child health professionals in cases where infants may be abused and neglected. Taking lessons from professionals working in highly collaborative states, the team assessed the implementation of collaborative policies and practices in Utah with an aim to improve interprofessional collaboration and health outcomes for infants. Chapter 9, “Interdisciplinary Community-Engaged Research (ICER) for Health: Growing in Understanding and Effectiveness,” brings together the experiences and insights shared by authors, drawing out commonalities and distinct lessons learned with regard to these teams’ community-engaged research for better health. Chapter 9 also examines the crosscutting benefits and challenges of community- engaged research on issues related to early childhood health as exemplified by these teams’ efforts.

Paving the Way: Road Maps for Interdisciplinary Community-Engaged Research

This book should be of interest to scholars and practitioners working across diverse disciplines and in a multitude of community settings. Anyone interested in going into public health, community health, and early childhood health—particularly for at-risk children—will find this volume to be very valuable. It provides examples of cutting-edge research being done in these areas of interest and practice. Practitioners who are considering doing an assessment of a current program, designing a new service or intervention, or figuring out what works, can turn to this

volume as a road map for building collaboration with researchers.

Researchers need community engagement to do research; disseminate knowledge about research findings; and implement evidence-based interventions, programs, and policies. We know from decades of experience that the traditional top-down approach to studying groups, populations, and communities does very little to change actual practices in real-world settings. In order to understand how to work together most effectively, however, scholars, practitioners, and community organizations could use a road map. Researchers and community partners need to collaborate to understand how to ask scientifically rigorous questions that are informed by community experiences and how to develop evidence-based interventions and programs that fit the community context. The community needs to be involved from the beginning in order to build community buy-in into the research that is conducted “on them” if we are going to effectively address social determinants of health and find local solutions to global challenges. Our hope is that scholars who are interested in effective community engagement and partnering in research will find in this volume examples of good practice that will get them going on this imperative but challenging work.

Students learning research methods aimed at answering pressing questions about social problems should also read this volume. For these students this volume serves as an applied methods text, exemplifying and hopefully generating fruitful discussions about the strengths and weaknesses of participatory methods and the messiness of community engagement in what is often assumed to be an objective and clinical research process. It can also serve as a good text on action research and an example of applied quantitative methods. For doctoral students getting ready to do fieldwork or design their own community-engaged research dissertation, this volume should serve as an excellent specialized methods primer and field preparation guide. Finally, for individual researchers or research teams looking to apply for grants for team-based research and/or community-based research, this volume presents excellent examples and research guidance.

Most of all, as editors of this book, we hope this volume will inspire you as an engaged community member, as a researcher, organizer, or possible community partner to pursue community-engaged research and continue to move important work on health, equity, justice, and community forward.

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Drahota, A., R. D. Meza, B. Brikho, M. Naaf, J. A. Estabillo, E. D. Gomez, S. F. Vejnoska, S. Dufek, A. C. Stahmer, and G. A. Aarons. 2016. “Community- Academic Partnerships: A Systematic Review of the State of the Literature and Recommendations for Future Research.” Milbank Quarterly 94 (1): 163–214.

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