Elizabeth Clark-Kauffman

Community-based participatory research: a review of the literature with strategies for community engagement.

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.

Context Matters: A Community-Based Study of Maternal Mental Health, Life Stressors, Social Support, and Children's Asthma

OBJECTIVE. Recent national survey data indicate an overall asthma prevalence of 12.2% for children who are younger than 18 years. Previous research in clinical samples of children with asthma suggests that their mothers are at greater risk for symptoms of depression. We describe the relationship between maternal symptoms of depression and having a child with asthma in a community-based sample. METHODS. After a school-based ascertainment of asthma and asthma symptoms in 15 low-income, racially/ethnically diverse public elementary schools, 1149 eligible mothers agreed to participate in a longitudinal study. Mothers either had a child with previously diagnosed asthma or a child with symptoms consistent with possible asthma or were in the randomly selected comparison group in which no child in the household had asthma. During the first interview, mothers responded to questions about their own life stressors, supports and mental health, and their childrens health. RESULTS. In bivariate analyses of a community-based sample of children who share low-income neighborhoods, mothers of children with diagnosed or with possible undiagnosed asthma had more symptoms of depression than did mothers of children who have no asthma. Mothers of children with diagnosed or with possible undiagnosed asthma also experienced more life stressors than did mothers of children without asthma. Using nested linear regression, we estimated a model of maternal symptoms of depression. Most of the variation in Center for Epidemiologic Studies–Depression score was accounted for by life stressors and social support. There were no independent effects of either asthma status or asthma status–specific child health status on maternal symptoms of depression. CONCLUSION. Children who are under care for chronic conditions such as asthma live and manage their illness outside the clinical setting. Their social context matters, and maternal mental health is related to their childrens physical health. Although having a child with asthma may be “just” another stressor in the mothers social context, complex treatment plans must be followed despite the many other pressures of neighborhood and family lives.

Shedding Light on the Mechanisms Underlying Health Disparities Through Community Participatory Methods: The Stress Pathway

Health disparities are large and persistent gaps in the rates of disease and death between racial/ethnic and socioeconomic status subgroups in the population. Stress is a major pathway hypothesized to explain such disparities. The Eunice Kennedy Shriver National Institute of Child Health and Human Development formed a community/research collaborative—the Community Child Health Network—to investigate disparities in maternal and child health in five high-risk communities. Using community participation methods, we enrolled a large cohort of African American/Black, Latino/Hispanic, and non-Hispanic/White mothers and fathers of newborns at the time of birth and followed them over 2 years. A majority had household incomes near or below the federal poverty level. Home interviews yielded detailed information regarding multiple types of stress such as major life events and many forms of chronic stress including racism. Several forms of stress varied markedly by racial/ethnic group and income, with decreasing stress as income increased among Caucasians but not among African Americans; other forms of stress varied by race/ethnicity or poverty alone. We conclude that greater sophistication in studying the many forms of stress and community partnership is necessary to uncover the mechanisms underlying health disparities in poor and ethnic-minority families and to implement community health interventions.

Spiritual and Religious Resources in African American Women Protection From Depressive Symptoms After Childbirth

Many women experience depressive symptoms after childbirth, and rates among African Americans are as high as 40%. Spirituality and religiosity are valued in African American communities, but their relevance to new mothers has not been empirically tested. We examined effects of religiosity and spirituality on trajectories of depressive symptoms during the year after childbirth. Data were collected by the Eunice Kennedy Shriver National Institute of Child Health and Human Development Community Child Health Network, which focuses on maternal-child health disparities. The sample consisted of 702 low-socioeconomic-status African American predominantly Christian women. Participants were interviewed in their homes throughout the year after a birth. Spirituality and religiosity each independently predicted changes in depressive symptoms, and low levels predicted increases over time. Effects of religiosity were mediated by a woman’s spirituality. Religiosity and spirituality functioned as significant, interrelated protective factors in this study, which provides novel insight about lower-income African American women after childbirth.

The Community Child Health Network Life Stress Interview: a brief chronic stress measure for community health research

ABSTRACT Background and Objectives: Chronic stress is implicated in many theories as a contributor to a wide range of physical and mental health problems. The current study describes the development of a chronic stress measure that was based on the UCLA Life Stress Interview (LSI) and adapted in collaboration with community partners for use in a large community health study of low-income, ethnically diverse parents of infants in the USA (Community Child Health Network [CCHN]). We describe the instrument, its purpose and adaptations, implementation, and results of a reliability study in a subsample of the larger study cohort. Design and Methods: Interviews with 272 mothers were included in the present study. Chronic stress was assessed using the CCHN LSI, an instrument designed for administration by trained community interviewers to assess four domains of chronic stress, each rated by interviewers. Results: Significant correlations ranging from small to moderate in size between chronic stress scores on this measure, other measures of stress, biomarkers of allostatic load, and mental health provide initial evidence of construct and concurrent validity. Reliability data for interviewer ratings are also provided. Conclusions: This relatively brief interview (15 minutes) is available for use and may be a valuable tool for researchers seeking to measure chronic stress reliably and validly in future studies with time constraints.

Erratum to Shedding light on the mechanisms underlying health disparities through community participatory methods: The stress pathway (Perspectives on Psychological Science, (2013), 8, (613-633))

research-article2013 PPSXXX10.1177/1745691613506016Dunkel Schetter et al.Multidimensional Stress Assessment Shedding Light on the Mechanisms Underlying Health Disparities Through Community Participatory Methods: The Stress Pathway Perspectives on Psychological Science