Madeleine U. Shalowitz

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.

Racial and ethnic disparities in diagnosed and possible undiagnosed asthma among public-school children in Chicago

OBJECTIVES We examined racial and ethnic disparities in the total potential burden of asthma in low-income, racially/ethnically heterogeneous Chicago schools. METHODS We used the Brief Pediatric Asthma Screen Plus (BPAS+) and the Spanish BPAS+, validated, caregiver-completed respiratory questionnaires, to identify asthma and possible asthma among students in 14 racially/ethnically diverse public elementary schools. RESULTS Among 11490 children, we demonstrated a high lifetime prevalence (12.2%) as well as racial and ethnic disparities in diagnosed asthma, but no disparities in prevalences of possible undiagnosed asthma. Possible asthma cases boost the total potential burden of asthma to more than 1 in 3 non-Hispanic Black and Puerto Rican children. CONCLUSIONS There are significant racial and ethnic disparities in diagnosed asthma among inner-city schoolchildren in Chicago. However, possible undiagnosed asthma appears to have similar prevalences across racial/ethnic groups and contributes to a high total potential asthma burden in each group studied. A better understanding of underdiagnosis is needed to address gaps in asthma care and intervention for low-income communities.

Postpartum weight retention risk factors and relationship to obesity at 1 year.

OBJECTIVE: To explore risk factors for postpartum weight retention at 1 year after delivery in predominantly low-income women. METHODS: Data were collected from 774 women with complete height and weight information from participants in the Eunice Kennedy Shriver National Institute of Child Health and Human Development Community Child Health Network, a national five-site, prospective cohort study. Participants were enrolled primarily in the hospitals immediately after delivery. Maternal interviews conducted at 1, 6, and 12 months postpartum identified risk factors for weight retention and included direct measurement of height and weight at 6 and 12 months. Logistic regression assessed the independent contribution of postpartum weight retention on obesity. RESULTS: Women had a mean prepregnancy weight of 161.5 lbs (body mass index [BMI] 27.7). Women gained a mean of 32 lbs while pregnant and had a 1-year mean postpartum weight of 172.6 lbs (BMI 29.4). Approximately 75% of women were heavier 1 year postpartum than they were prepregnancy, including 47.4% retaining more than 10 lbs and 24.2% more than 20 lbs. Women retaining at least 20 lbs were more often African American, younger, poor, less educated, or on pubic insurance. Race and socioeconomic disparities were associated with high prepregnancy BMI and excessive weight gain during pregnancy, associations that were attenuated by breastfeeding at 6 months and moderate exercise. Of the 39.8 with normal prepregnancy BMI, one third became overweight or obese 1 year postpartum. CONCLUSION: Postpartum weight retention is a significant contributor to the risk for obesity 1 year postpartum, including for women of normal weight prepregnancy. Postpartum, potentially modifiable behaviors may lower the risk. LEVEL OF EVIDENCE: III

A community-based study of tobacco smoke exposure among inner-city children with asthma in Chicago

BACKGROUND Little is known about the level of tobacco exposure and the factors that influence exposure in children with persistent asthma. OBJECTIVE We sought to measure tobacco smoke exposure and determine factors associated with exposure in a large urban sample of asthmatic children. METHODS This cross-sectional study is based on a community-based cohort of 482 children (8-14 years old) with persistent asthma. Caregiver and household tobacco use were reported by the caregiver. Child tobacco smoke exposure was assessed by using salivary cotinine level. Multivariate linear regression of log-transformed salivary cotinine levels were used to characterize the relationship between smoke exposure and caregiver, household, and demographic characteristics. We used a multivariate logistic model to characterize associations with caregiver smoking. RESULTS Overall, 68.5% of children had tobacco smoke exposure. Compared with nonexposed children, those exposed to smoking by a caregiver or another household member had cotinine levels that were 1.68 (95% CI, 1.45-1.94) or 1.40 (95% CI, 1.22-1.62) times higher, respectively. Compared with Hispanic children, African American and white/other children had 1.55 (95% CI, 1.16-2.06) and 1.59 (95% CI, 1.18-2.14) times higher cotinine levels, respectively. Child exposure was also associated with caregiver depression symptoms (odds ratio, 1.01; 95% CI, 1.01-1.02), and higher household income was protective (odds ratio, 0.73; 95% CI, 0.56-0.95). Independent predictors of caregiver smoking included a protective effect of higher education (odds ratio, 0.35; 95% CI, 0.15-0.83) and a positive association with potential problematic drug/alcohol use (odds ratio, 2.30; 95% CI, 1.39-3.83). CONCLUSIONS Tobacco smoke exposure was high in this urban sample of asthmatic children. Caregiver smoking was strongly associated with child exposure and also was associated with lower socioeconomic status, non-Hispanic ethnicity, and depression symptoms.

The Preconception Stress and Resiliency Pathways Model: A Multi-Level Framework on Maternal, Paternal, and Child Health Disparities Derived by Community-Based Participatory Research

Abstract Emerging evidence supports the theoretical and clinical importance of the preconception period in influencing pregnancy outcomes and child health. Collectively, this evidence affirms the need for a novel, integrative theoretical framework to design future investigations, integrate new findings, and identify promising, evidence-informed interventions to improve intergenerational health and reduce disparities. This article presents a transdisciplinary framework developed by the NIH Community Child Health Network (CCHN) through community-based participatory research processes. CCHN developed a Preconception Stress and Resiliency Pathways (PSRP) model by building local and multi-site community-academic participatory partnerships that established guidelines for research planning and decision-making; reviewed relevant findings diverse disciplinary and community perspectives; and identified the major themes of stress and resilience within the context of families and communities. The PSRP model focuses on inter-relating the multiple, complex, and dynamic biosocial influences theoretically linked to family health disparities. The PSRP model borrowed from and then added original constructs relating to developmental origins of lifelong health, epigenetics, and neighborhood and community influences on pregnancy outcome and family functioning (cf. MCHJ 2014). Novel elements include centrality of the preconception/inter-conception period, role of fathers and the parental relationship, maternal allostatic load (a composite biomarker index of cumulative wear-and-tear of stress), resilience resources of parents, and local neighborhood and community level influences (e.g., employment, housing, education, health care, and stability of basic necessities). CCHN’s integrative framework embraces new ways of thinking about how to improve outcomes for future generations, by starting before conception, by including all family members, and by engaging the community vigorously at multiple levels to promote resiliency, reduce chronic and acute stressors, and expand individualized health care that integrates promotive and prevention strategies. If widely adopted, the PSRP model may help realize the goal of sustaining engagement of communities, health and social services providers, and scientists to overcome the siloes, inefficiencies, and lack of innovation in efforts to reduce family health disparities. Model limitations include tremendous breadth and difficulty measuring all elements with precision and sensitivity.

Reliability and Validity of the Spanish Version of the Crisis in Family Systems–Revised:

Increasing the representation of Spanish-speaking study participants requires development and dissemination of reliable and valid translated scales. In the current study the construct validity was assessed of the Spanish version of the Crisis in Family Systems-Revised, a measure of contemporary life stressors, with a convenience sample of 377 parents interviewed in a study of childhood asthma, although over half of the respondents did not have children with asthma. Most respondents were foreign-born women between 20 to 60 years old (M = 35, SD = 7). 52% had not completed high school or its equivalent, and 55% reported a household income of

Promoting Education, Mentorship, and Support for Pediatric Research

15,000 or less. For a subsample of 25 respondents test-retest reliability was .86 over 2 wk. Reporting more life stressors was associated with greater depressive symptomatology, poorer physical and mental health function, and lower household income. These relationships support the construct validity of the test in Spanish. This study provided strong evidence that this version is a valid and reliable measure of life stressors for a Spanish-speaking population living in the United States.

The burden of asthma in the Chicago community fifteen years after the availability of national asthma guidelines: The design and initial results from the CHIRAH study☆

Pediatricians play a key role in advancing child health research to best attain and improve the physical, mental, and social health and well-being of all infants, children, adolescents, and young adults. Child health presents unique issues that require investigators who specialize in pediatric research. In addition, the scope of the pediatric research enterprise is transdisciplinary and includes the full spectrum of basic science, translational, community-based, health services, and child health policy research. Although most pediatricians do not directly engage in research, knowledge of research methodologies and approaches promotes critical evaluation of scientific literature, the practice of evidence-based medicine, and advocacy for evidence-based child health policy. This statement includes specific recommendations to promote further research education and support at all levels of pediatric training, from premedical to continuing medical education, as well as recommendations to increase support and mentorship for research activities. Pediatric research is crucial to the American Academy of Pediatrics’ goal of improving the health of all children. The American Academy of Pediatrics continues to promote and encourage efforts to facilitate the creation of new knowledge and ways to reduce barriers experienced by trainees, practitioners, and academic faculty pursuing research.

Validation of the Crisis in Family Systems–Revised, a Contemporary Measure of Life Stressors

Since the early 1990s, asthma burden has been recognized as a national public health concern in the United States [1]. The asthma burden has disproportionately affected persons of certain racial/ethnic backgrounds, principally African Americans [2] and those persons living in urban environments [3,4]. Concern about the growing problem of asthma has led to a number of national, state, and local efforts towards improving asthma outcomes and control [5,6,7,8]. No national effort toward asthma control has been more celebrated than the implementation of the National Heart, Lung and Blood Institutes National Asthma Education and Prevention Program (NAEPP). Initiated in 1989, to a large extent in response to the publics concern about the increased asthma prevalence and burden, the NAEPP set its first programmatic effort to the establishment of guidelines to improve asthma care [9]. Since the initial release of these guidelines in 1991, hundreds of thousands of copies have been distributed [10] and there have been countless efforts directed toward moving these guidelines into practice including continuing medical education (CME) programs, disease management programs, clinical performance measures, and research efforts. The NAEPP continues efforts in the establishment of national guidelines through a series of updates to the original guidelines, including the recent release of a major update in November 2007 [11,12]. While there continues to be numerous reports of progress of local implementation and health plan efforts, these reports have focused on changes in asthma processes of care or on outcomes limited primarily to health care utilization among selected, mostly health plan or practice-based samples. To date, there is a rather modest literature on community-wide population-based status of asthma burden and quality of care. The Chicago Initiative to Raise Asthma Health Equity (CHIRAH) is one of the NHLBI Centers of Excellence in Reducing Asthma Disparities. The core activity of the CHIRAH has been to conduct a community-based cohort study designed to characterize those factors that are contributing to racial/ethnic disparities with the purpose of identifying mutable factors that may provide the basis for new intervention strategies to eliminate these disparities. The CHIRAH project therefore provides a unique opportunity to report on a population-based understanding of the burden of asthma in a large urban environment known to have one of the highest asthma mortality rates in the US [13]. The purpose of this report is to examine the overall burden of asthma morbidity and treatment as seen from the perspective of this community-based study.