Community-Based Participatory Research: A Review of the Literature With Strategies for Community Engagement

Abstract

Listen

Translate article

Madeleine U. Shalowitz, MD, MBA,* Anthony Isacco, PhD, Nora Barquin, PhD, MSW, Elizabeth Clark-Kauffman, MHS, Patti Delger, RD, Devon Nelson, BA, Anthony Quinn, BA, Kimberly A. Wagenaar, RN, MSC Healthy People 2000 and 2010, the federal public health strategic plans, proposed to eliminate health disparities in populations grouped by social factors that negatively affect the health of mothers, infants, and children.1 In particular, infants and children from low-income and racial and ethnic minority families have higher rates of obesity and preterm birth, infant mortality (including sudden infant death syndrome), and morbidity and mortality because of asthma, when compared with infants and children from white or middle-income families.2–7 Despite a substantial investment by the federal government nearly more than 20 years of research and demonstration, aggregate statistics on children’s health in these areas show negligible improvement, indeed some problems have worsened. In an effort to reconceptualize the approach to society’s most intractable health problems, communitybased participatory research (CBPR) has emerged as a promising new direction. The CBPR is innovative because it harnesses community wisdom in an equal partnership with academic methodological rigor throughout the research process.8 The Agency for Healthcare Research and Quality, in its comprehensive evidence report of CBPR, offered one well-stated definition of CBPR as “a collaborative research approach that is designed to ensure and establish structures for participation by communities affected by the issues being studied, representatives of organizations, and researchers in all aspects of the research process to improve health and well-being through taking action, including social change.”8 The purpose of this article is to review the CBPR literature and to provide a case example of the initial strategies that we used to engage community members in an academic-community partnership using CBPR as our guiding framework. HISTORY AND LITERATURE REVIEW Historical Roots of Community-Based Participatory Research The historical roots of community-based participatory research (CBPR) can be traced by Kurt Lewin, who was a social scientist in the 1940s and who developed CBPR to use research for social action and change.9 The CBPR was also heavily influenced by the writings of Paulo Freire and has been used in Latin American, Asia, Africa, Brazil, Tanzania, and India before gaining ground in the United States.10 Other common terms for the CBPR are community-based action research or community participatory action research. The CBPR diverged from the predominant research approaches by involving people affected by a problem in developing solutions through collaborative research, planned action, along with process and outcome evaluation.11 In essence, the CBPR is not a strict methodology but an orientation to research that guides decision making and allows for the use of qualitative and quantitative methods. The CBPR framework has become more widely used in the United States and considered an ethical approach to research within the historical context of research injustices against disadvantaged communities, which have contributed to community distrust of research and hesitation to partner with researchers.12 The Tuskegee syphilis experiment represents one shocking example13 (African-American men were followed up in a study of the natural history of syphilis beginning in the 1930s. Until 1972, they remained untreated and unaware that treatment was available—even though penicillin became available in the late 1940s and the study team knew about the effective treatment). In contrast, CBPR scholars agreed that an equal partnership between researchers and communities would facilitate trust, help ensure ethical conduct, and increase the likelihood for a successful project. The CBPR is consistent with scholarship from multiculturalist theory, anthropology, feminist theory, and other fields of the study, which have introduced relational process-oriented paradigms as alternatives or complements to traditional research approaches. Traditional research approaches have emphasized knowledge creation through the collection of observable, quantifiable data that test a priori hypotheses while maintaining a distant objective relationship with the research particiFrom the Department of Pediatrics, University of Chicago, Pritzker School of Medicine, Chicago, IL; *Northwestern University, Feinberg School of Medicine, Chicago, IL.